Fight 4 Owen

What a beautiful little boy!

2010-01-05T11:25:00.000-08:00

I just wanted to post some of my favorite pictures of Owen from the last year. I look at Owen's pictures all the time and we have many around the house. I feel like we truly captured his bright spirit and gorgeous smile in so many of them. It is so difficult to not have him with us every day. I think it has been especially hard on me because for the past year I stopped working and pretty much devoted everything to taking care of Owen and give him all the attention he needed.

Some days I feel so lost without the routine and schedule that Owen and I had. Even though it was the hardest thing I have ever had to do, I truly miss taking care of Owen. I had such a purpose and Owen appreciated everything. He truly could not do much for himself at all and I loved being able to be home and dedicate my day to making him happy and as healthy as possible. Without the O-man here now I feel like I have lost a part of myself.

I think it is harder now that it has been almost 2 months. The whirlwind of Owen getting sick, then passing away, the wake...funeral, all the cards and phone calls and flowers...it just kept us busy for a while...then it was the holidays and all the things that go along with it. Now it just seems to be back to reality and it it so hard everyday to not have our wonderful little boy with us.

The thing that I think about all the time is this more than anything: We had the most gorgeous, smart, funny and charming little man. More than being sad or angry or upset- the one thing that I feel the most in my heart is how much I truly and utterly miss Owen. I miss his smile, I miss his kisses, I miss his laughter, I miss his glowing eyes, I miss his silly faces, I miss his smell, I miss his soft skin and fuzzy hair, I miss him holding my fingers and not letting them go, I miss the way he looked at Adyn, I miss our walks, I miss singing and dancing together, I miss absolutely every single thing about him. I would give anything to have just one more moment with him.

Even though my heart aches without him, every time I look at one of his pictures I smile. Even when I am sobbing, I am still smiling at what an amazing little boy we had and how lucky Andy, Adyn and I were to have him in our lives.

Happy 2nd Birthday Owen!!

2009-12-27T04:53:00.000-08:00

Dear Owen,

Mommy has been wanting to write you a letter for a while. I talk to you every single day but I don't usually write anything down.

First of all let me wish you the most wonderful, happy, joyous, fun birthday that you can have. I know you are celebrating with all your friends in Heaven ( especially Addie!) It makes Mommy so sad that we could not be together today. I know that you wouldn't have been able to eat cake or ice cream but I wish we could have let you try to blow out the candles and let you hear everyone sing you Happy Birthday.

Since we can not have you here we are going to celebrate your birthday in a new way. We are all going to Grammie's house this morning. We bought a ton of beautiful, bright balloons for you. We are each going to write you a little message and attach them to the balloons and send them up to Heaven. We bought all the colors of the rainbow and also some special Mickey ones since he was your very favorite. I bought a "2" candle and since we are having coffee and donuts we will stick it in a chocolate one and sing to you. I will make sure everyone sings really loud so that you can hear it up there!!

Of course Mommy is sitting here crying as I write this to you. I just want you to know that I miss you so much- it breaks my heart that we had to let you go. I know you are in a better place and free from hurting and machines but I would give anything to just hold you in my arms and see your beautiful smile one more time.

The thing that I miss most about you was our special Mommy and Owen time in the morning. Every time I close my eyes the first thing that pops in to my head about you was your shining, smiling face every morning when I went to get you out of your crib. You were usually already awake. You would hear me coming and turn your head the best that you could to look at me entering your room. Every single day you would just look up at me with the most beautiful face. I will never forget that for as long as I live. We would unhook all the machines that you needed through the night. As we did that we would sing our two good morning songs and you laughed through them both. Next I would pick you up and dance you to the rocking chair. We would sit and rock for a bit and sing "The wheels on the bus" your favorite song. Then it was down the stairs and we did our counting the whole way down ( 15 steps) if I forgot to count you would let me know and I would have to go up and start from the beginning. This special quiet time that we shared each morning is one of my most treasured times with you. I think about it all the time. I hope you remember it as fondly as I do! ( I know you do because the laugh and smile on your face during it all is so vivid in my memory!)

More than anything Owen I want you to know how amazingly proud we are of you. I am so thankful and blessed that I got to be your mommy!! I love you with all my heart and miss you more and more everyday. Please enjoy your birthday and know that we will be celebrating your short but very meaningful life today. Watch out for the balloons around 11am!! We will be sending our love and messages up to you today! Mommy loves you so much! xoxo

Love, Mommy

So sad tonight

2009-11-26T17:00:00.000-08:00

We went to my mother's for Thanksgiving earlier today. The food was amazing and we had a really nice time with our family. My crazy brother in law kept us all in stitches all day long!

We came home and Andy and Adyn were online doing his Webkinz shark (that he named Lenny) that his friend Nick bought him when Owen passed away. I sat on the couch and closed my eyes and just started to bawl. I miss Owen so unbelievably much. It literally makes my insides hurt to think that he isn't here with us anymore. I curled up on the couch and just let loose. I tried to remember everything about him...his smell, our daily routine, his smile, all the things that he liked, exactly what his body looked like, from his little fingers to his very crooked toes. I just tried to remember every single memory that I have of him.

I started thinking about the day that Owen's passed away and everything that has happened since then to this very moment. It feels like a blur and sometimes I have to remind myself that this isn't just a nightmare and it really did all happen.

I just feel like I have a part of my heart that is missing. I feel so thankful to have Andy and Adyn but I just am so sad without the O man. I feel like it is so unfair for everything he had to face and now it is so unfair that he was taken from us before he ever turned 2. We adored him and loved him with such intensity that is just feels like a slap in the face that we lost him. How could this happen when we loved him so very much??!!

I know that it doesn't matter how much we loved him- Owen had a horrible disease that has no cure. It was not our faults and we did absolutely everything in our power for him. SMA takes children from their families every day. It is horrifying to me when I imagine all the other families that are dealing with this disease and losing their children far too young.

I guess I have rambled on quite a bit with this post. It is just how I am feeling...sad, mad, lonely, empty, bittersweet, thankful for what I do have. thankful for our friends and family, tired from thinking too much, nostalgic for all my happy memories of Owen, angry etc. etc. You get the drift. I am just a bundle of feelings and emotions. I am trying to keep very busy so that I have something to keep me going. Glad the holidays are here to give me things to do...but so, so sad that our sweet baby can't be here to share the love and laughter of the season. Owen only got to be here for one Thanksgiving during his too short life...it isn't fair...it just isn't fair.

Owen's Eulogy

2009-11-21T18:08:00.000-08:00

Abraham Lincoln once said: And in the end, it is not the years in your life that count. It is the life in your years.

The past year has been filled with moments where time seems to stand still but also has passed in what feels like just a blink of the eye. Through it all Owen was always the one guiding our way. When Owen was diagnosed last December, we were faced with so much heartbreaking information about Spinal Muscular Atrophy. We also had some extremely hard decisions to make concerning how much intervention we would have and how much we were willing to put Owen through.

There are some of the things that we cannot forget fast enough:

Our countless trips to Children’s hospital, the endless machines that filled our house and made Owen’s room look like a hospital. The loud sounds from his machines that caused him to panic every time we turned them on. The constant worry and fear that filled every day.

That being said there are so many more things that we will never ever forget:

How excited Andy and I were to find out we were having another son. Owen’s extra long eyelashes, the way his belly bounced up and down when he was excited, how amazing he always smelled after his bath. How much he loved getting massaged, the way he liked to bite our noses when we tried to kiss him, The fact that he smiled during every single doctor’s appointment that we dragged him to. The way he would throw his head back to feel the breeze on his face, how much he enjoyed his walks through the neighborhood. Hearing the sweet sound of him giggling, watching our two boys together, his crooked toes, and finally the amount of love that we squeezed into every moment we shared with our sweet little boy.

Andy and I are forever grateful that every single day of Owen’s short life was filled with laughter, love and happiness

Owen was the most brave and courageous little boy. His short life impacted so many people. He brought old friends back into our lives and also let us meet many new ones. He caused people to appreciate what they have and to be grateful for their blessings. He reinforced to us the idea of unconditional love. He captivated everyone he met with his sparkling eyes and beautiful smile. He strengthened our already close family and allowed Andy and I to become a true team.

We are so proud of Owen. We are thankful that God listened to our prayers and took Owen before he struggled too much. We find solace in the fact that we listened to our baby and were selfless enough to let him go even though it was the hardest thing we have ever faced. We are grateful for every moment that we spent together. Owen saw and felt more love in his 23 months than many people have in their whole existence. And most importantly we are incredibly thankful that God trusted us with Owen’s care and allowed us the great privilege to be able to call him our son.

Angel Owen

2009-11-14T18:20:00.000-08:00

Our sweet, beautiful little boy took his last breath tonight at home in our arms. He was so brave and we are unbelievably proud of Owen. We knew this would happen but it was so much harder than we ever anticipated. When we make arrangements we will post them here.

Something to make you smile

2009-11-11T04:34:00.000-08:00

Just a quick note. We didn't have a ton of pictures from Halloween so these are the best I can find right now. Tings have been sort of tough lately and I thought that these would lighten it up a bit. Plus O looked so adorable as a fireman. The top picture is the boys in their PJ's. We are at my in- laws house.

Owen has been having many more episodes that require rounds of suctioning, chest PT and coughing. It is getting a bit scary because the need for this has increased greatly in just a few weeks. Andy and Adyn have been sick for a few days and have been banished to the upstairs while the nurses and I handle things downstairs. I woke up this morning and I think I have caught whatever they have floating around. I am nervous that Owen will get sick and who knows how that will turn out. I am trying to Lysol everything and keeps things as sanitary as we can. Lets say a prayer that Owen makes it out healthy after being around germs.

Pneumonia

2009-11-08T20:50:00.000-08:00

We had a regular home visit scheduled for Friday with Owen's pulmonologist and RT. They would be in the area and wanted to stop in and check on Owen. It honestly was a blessing in disguise because had they not been coming we would have ended up taking Owen to the hospital.

Owen had a fussy night on Thursday and we must have gotten up at least 20 times to roll him over and readjust him. He was super fussy and generally unsettled. He had a few coughing spells but seemed to clear them without a ton of intervention. Around 5 am he really began fussing and crying and having much more coughing spells. I brought him downstairs and tried to get his comfortable and calmer. I did quite a few rounds of nasal suctioning but couldn't really clear what was going on. I was pretty much just counting down until 9 when our nurse Kris was scheduled to get here.

She walked in the door expecting a smiling Owen and was met with an extremely unhappy little boy who was in a lot of discomfort. Dr. Graham and Lauren arrived about 30 minutes later. I felt very relieved that they were here to witness what was happening.

They came in and examined Owen. Right away they were asking us if we had a prescription for morphine in the house. We didn't. They though that Owen needed something to calm him a bit and help him not struggle so much to breathe. I ended up taking Dr. Graham to CVS so we could get an emergency script of morphine. It took a long time and I was extremely unhappy with the pharmacist from CVS. That is another whole story but I will say she is lucky I had a lot on my mind because I was extremely ticked to say the least.

We returned and after several rounds of chest PT, coughing him with the Cough Assist and suctioning Owen was more stable and had actually fallen asleep. I can't blame him- it had been an exhausting morning.

So we sat down and talked. They thought Owen had pneumonia from his chest sounds. He has very labored breathing and was actually sort of thrusting his body around to try and open up his airways. We had been worried but after talking to Rob and Lauren it seemed much worse than we thought originally.

Rob had actually called the PACT team from Boston which is a team of Dr.s, social workers etc. that deal with families with terminal illnesses. He wanted to set up hospice nursing for Owen. They were also discussing end of life care with us...would we intubate Owen?...how far were we willing to intervene...would we want to be at home or in the hospital for Owen to pass? It was really scary and even though we have discussed these things before it was so much more real when it could actually be happening.

Rob and Lauren later told us that they thought we might be dealing with palliative end of life care with Owen. They weren't sure if he would make it through the weekend. Many SMA kids die with complications from pneumonia. Since this was his first bout with it...we just didn't know how badly it would affect him.

I am happy to say that Owen is doing much better and it seems that he was strong enough to fight it this time. He has had a few episodes this weekend that required us to do sessions of chest PT, coughing and suctioning. He is definitely stronger than he was and we are pleased with his improvements.

It was extremely scary for us and felt like we just had no idea what to anticipate. Rob and Lauren are so familiar with SMA, we knew when they thought it was really serious that it was worse than we originally thought. We now have morphine for him and plan to use it if he is ever at that level again. We are hoping that O remains strong enough to fight this off and to stay healthy. We know that it can happen again at any time and at some point he will not have the strength to do it again. We are so proud of our sweet brave little boy. He is a fighter and we will keep you updated with any news.

Thanks to all our family and fiends who have called or offered support of help to us. A special thanks to the NB detectives who brought us a care package with Riccardi's food so we wouldn't have to worry about eating! You are all amazing for thinking and taking care of us while our attention has been of Owen.

Lots of News

2009-11-08T20:42:00.000-08:00

It has been a few weeks since I have posted. Things were quite busy and at times chaotic. First off let me tell you that we purchased a wheelchair van for the O man. We had been in contact with a few adaptive vehicle companies and Ride A Way in Attleboro ended up with an amazing van for us. It is a 2005 Chrysler Towne and Country. It is Silver and amazingly had only 800 miles on it. A elderly woman had bought it brand new to drive and never got much of a chance to use it. It is like a brand new vehicle. We love it and are so thankful to everyone that helped us get this for Owen. All the donations and generosity of our friends and family made this possible and for that we are forever grateful.

On a more serious note...Owen for the past few weeks has had increasing trouble with clearing secretions. He has required suctioning at least once a day. We have had to pull over on the side of the road and I also had to leave Target and suction Owen in the van. He just starts coughing so much and can not clear his airways without the help of the suction. We use a catheter and stick it down his nostril into the back of his throat and suction out all the junk that is blocking him up. Owen hates it...the machine is very loud....overall it is one of the most unpleasant hings you could imagine having to do. I can only imagine how awful it is for Owen, but, it seems that this is now a necessary part of our everyday life.

My wish

2009-10-20T06:29:00.001-07:00

I stumbled across this song somewhere while browsing some mommy blogs that I read of other special needs families. I like Rascall Flatts but I had never heard this song. I have been a bit down lately for one reason or another- once I head this song I was sitting at the computer with tears streaming down my face. Adyn and Owen are the most amazing gifts I have ever received and although some days it just seems so hard...I am truly incredibly thankful and blessed to be their mommy! This is everything I wish for my beautiful little boys!
http://www.youtube.com/watch?v=xz32I_GbpeU&feature=related

I don't know why I am having a tough time...Owen is fairly stable...we haven't had any big changes or surprises lately. Maybe that is why it is hard- we are settling into an everyday routine and our life is just so different than we could have ever imagined. When things are crazy and Owen is having a problem we are so focused on helping him that sometimes you are so fixated on the goal that you don't have time or energy to thing about anything else. When things are more calm, that is when it sets in how far we have come and just how long of a road we have before us. It seems so overwhelming some days. I try to take it one day at a time but that is not always possible.

There are so many worries: will Owen get really sick this winter...what can we do to prevent that...what kind of wheelchair van should we get...can we get any assistance with the purchase...how are we going to modify our home when Owen gets his power chair in a few months...will we have to move...where can I find a money tree ( haha ) ...is Adyn adjusting to all this craziness okay...how can we give Owen as normal a life as possible...will we lose Owen...when...how will we handle it...should we ever try for another healthy child even though are hands are full now...what will our family be like in a few years...how can we stay mentally strong for our children through all of this??? The list goes on and on and on and on. Some days it is just too much. I have to forget about it and try to focus on something, anything else just to give my brain a breather. I guess you just take one day at a time and go from there. Hopefully the rest will fall into place......

Owen Update

2009-10-18T06:26:00.000-07:00

Owen appears to have just had something viral. He is feeling better and no longer has a temperature. He is also in better spirits than he has been the past few days. Our main issue again is vomiting and gagging. He had a few weeks straight that we had nothing happening but since he began not feeling well his GI issues have flared up yet again.

It seems that his delicate system is just so sensitive and any time his body is fighting something it really upsets things. He threw up three times last night and had been gagging and vomiting daily before that. He was doing so well and we are hoping that once he gets back to his normal, that his GI issues will settle down again!

We have a visit to Boston next Monday to see his GI doctor. Owen will also be fitted for a new body jacket since his other one is getting much too small for him. We also will be picking up his Patriots AFO's.( leg braces)

We are heading this afternoon to a Halloween Birthday party for one of our good friends daughter Olivia. Adyn is super excited and will be dressed up as Mr. Incredible. It is an adorable costume and he is pumped! We will be leaving Owen with Andy's mom. We were going to take him but we think it will be best for him to be able to relax in some peace and quiet! I have a feeling that a 4 year old's birthday part might get a little wild!!

Not feeling well again...

2009-10-16T02:40:00.000-07:00

Well it is 5:30 am and I am wide awake. Andy and I have been taking turns the past two nights with staying up with a very unhappy child. Owen is sick again.

Haven't been to the doctor's yet- still waiting to see if it gets worse. Owen has had a fever on and off...generally crabby and uncomfortable...the gagging has returned ( so sad about that- but illness appears to really affect Owen's belly and sensitive digestive system)...stuffy and coughing on and off. My guess is just some kind of cold. We are just giving Motrin and Tylenol on schedule and trying to keep him comfortable.

He was really congested yesterday afternoon and Kathy Lee ( one of Owen's great nurses) and I decided to cough and suction him. He did not like it but after that treatment and some chest PT to break up the junk he seemed much clearer. We actually suctioned deep suctioned Owen for the first time. That consists of sticking the tube through his nostril and into the back of his throat. Usually we only stick the tube down his throat but Owen usually resists and tries to bite it. Through the nose you have a straight path with no resistance. It was actually very easy and I thought we definitely got more quicker this way. He hated it of course but it is important to help his clear secretions and mucus that he can't on his own.

So that is the new update. We have two nurses scheduled for today and I am thankful for that. It really helps to have another set of eyes checking O out and keeping track of things. We are so amazingly grateful for how awesome our three nurses are. We love them all and couldn't be more pleased!

I will write again if there are any changes with the O-man! Let's keep our fingers crossed that it goes away soon- so I can have my smiling happy little boy back!!

Check it out!

2009-10-07T05:44:00.000-07:00

Please check out the Standard Times article that was in today's newspaper. It is about Steve Taylor's 50 mile run to raise awareness about SMA. He is a good friend and also a co-worker of Andy's. We are so thankful for his determination and drive to run for Owen. What an amazing accomplishment!

http://www.southcoasttoday.com/apps/pbcs.dll/article?AID=/20091007/NEWS/910070329

A little sad

2009-10-01T05:27:00.000-07:00

Every year we try to take the boys for pictures around Easter time. This picture was taken when Owen was just about 4 months old. We have it framed with lots of other pics of the kids in our living room. Every time I walk by or dust I always get a bit upset when I see this picture.

This picture represents the limit of Owen's physical strength. The position he is in know was as advanced as he ever got. If we tried to put him in the position now his head would be completely on the blanket. He hasn't been able to lift his head like that in over a year.

It is so strange to me that this is one of the only pictures we have of Owen like that. It seems like it is almost a different child- the picture represents time when we had two healthy, happy little boys with so much potential. This was before the worrying and the nurses and doctors. It was before our life changed forever. At this time we still pictured our boys running and chasing after each other...jumping and wrestling together...climbing trees and skipping through puddles. I almost can't remember that when we were just so unaware that anything could be wrong with Owen.

Now our sweet boy is so limited physically. It breaks my heart daily to see him struggle so much. He has trouble with the most basic tasks. Even holding a crayon is a major thing. He doesn't have the strength to hold it and color. He loves coloring so much and it is just devastating to watch your smart and motivated child not be able to even apply enough pressure to make a mark in a coloring book.

Owen barely rolls...he has trouble moving and holding his head...he will never sit up independently...he can't lift his head or even turn his head if he is on his belly...he is just so limited physically and there is absolutely nothing we can do. The therapists do an amazing job with stretching him and working on his strength but you can only do so much. They are not magicians.

Owen's nurses have been taking him for walks daily, which he absolutely loves. The feel of the wind and air on his face makes him smile every time! I was leaving the other day to run some errands and I drove by Owen and Kathy Lee who is one of his nurses. I stopped to beep and wave at Owen...when I drove away I looked in my rear view mirror and I started to cry( which I don't do very often at all anymore) . Owen looked so handicapped to me. If I had driven by and not known them I would have felt so badly for him. He was all strapped in his chair and had his feeding pump attached and hooked up. It literally hurt my heart. I am with him so much that I guess I just forget sometimes how disabled he is, but driving away with his image in my mirror just made me reflect and remember how different our baby is.

It is a strange feeling and hard to express. We are totally accepting of SMA and what it has done to our family and to Owen. We know what to expect and have met many other children older than O. We know what is coming and we know what to anticipate. We are not angry and depressed about this...it is what it is and nothing we can do can change Owen's disease. But, every once in a while you get a flash of how horrible and devastating SMA is.

Hope this isn't too depressing...I am just trying to be honest and paint a truthful picture of what it is like. Most days are fine and you are just so busy to even think about things too much. Once in a while though something will happen and it feels like all you can think about is how unfair and horrible this disease is. Knowing it is slowly robbing your amazing child of so many things is a gut wrenching feeling.

On a better note- Owen is feeling much better from his virus and is doing much better on the continuous feeds. He is hooked up to the tube about 22 hours a day and his vomiting and reflux have declined drastically. He is sleeping more soundly and is overall much more comfortable! Hooray!

Quick Update

2009-09-22T12:41:00.000-07:00

We had decided that Adyn deserved a little treat for how amazing he has been with all our obligations to Owen. We left Saturday for 2 nights with the boys to NH. We planned on going to Storyland and Clark's Trading Post. We did get to see those two places and Adyn had an amazing time!

Owen on the other hand didn't have so much fun. We were up Saturday all night with a screaming, uncomfortable little boy. Owen vomited through Storyland and then proceeded to whine the rest of the trip. We decided to leave early and drove home late Sunday night.

He continued vomiting almost every feed and every time we gave him his meds. He showed no real signs of illness other than the irritability.

Owen was very crabby through the night and vomited again. He woke up this morning extremely unhappy and started with a fever. Owen's nurse Kris and I took him to the doctor's office. Dr. Simmons wasn't in so we got in with our favorite practitioner Lasselette. She is awesome- I was so glad that she was in- I trust her judgement and feel very comfortable with her!

Owen has some sort of virus. He tested negative for Strep and the Swine Flu test will be back later this evening. We plan on a few days of Owen not feeling well and being sick. His GI doctor and I decided that he should go on 24 hour continuous feeds for at least the next week- possibly longer, to give his digestive system a break and hopefully stop all the vomiting and gagging. Definitely not something I am thrilled about but it is in Owen's best interest.

I will update with any additional news.

UPDATE: Swine flu test is negative!! It appears to just be a virus. More updates tomorrow!

Mic-Key button

2009-09-21T04:41:00.000-07:00

We were up bright and early on Wednesday. We left the house at 5:30 to head up to Boston. We still hit traffic and were 20 minutes late. ( I called and they said don't rush) I hate being late...it drives me crazy! Boston traffic is seriously so hard to figure out.

So we got to Children's and got set up in the Gastro procedure unit. We had such a sweet nurse...she really explained everything so well. The only strange part was that behind the curtain next to us was a little girl who was screaming repeatedly at the top of her lungs..." I'm going to die." It was very alarming. Her parents weren't doing a very good job of calming her down. The even stranger part was that her whole procedure took like 5 minutes and then she was done! Poor thing I guess she was just scared.

The doctor and nurses wheeled the O man into the surgical room and were back within 15 minutes. Owen was not happy! They told us that they had to really yank the old tube out because his body didn't want to give it up. They warned us that he would be pretty sore. The cool thing was that after just a few minutes of explanation to us we were on our way and Owen's feeding was hooked up and running smoothly.

We headed to the CVS in the hospital and picked up Tylenol because I had only brought Motrin and they didn't want him to have that. I gave him a dose and then he slept the whole way home. He was sore for a few days and the area was tender but other than that it has been amazingly simple.

The button is much more discreet and fits better with his clothing. We are very happy with it and I will try to post a pic later today.

What a visit

2009-09-18T11:42:00.000-07:00

On Monday Owen and I welcomed some very special guests to our home. For those of you that read this blog regularly you may remember sweet Addie. ( for those of you who are knew click on the link below)
http://fight4owen.blogspot.com/2009/06/some-of-you-may-remember-story-of-owens.html

Addie's mom Kim and Addie's brother Ryan came to visit us. Kim and I email each other quite often and she has truly been such an amazing source of information and support for me. She really knows how I feel and I don't have to explain everything...she just gets it and she gets me. It is a fabulous feeling because so many others just don't.

We had never had the opportunity to meet face to face before Monday. I wasn't nervous at all. We have discussed so many intense and difficult subjects in the past that I felt totally comfortable having her over.

Can I just say that I knew Kim was awesome even before I met her...but after actually sitting and talking( for almost 4 hours by the way!) I was amazed at what a strong, driven, dedicated mother she is. I honestly don't know how she has made it through everything and is still in one piece. Her sweet Addie girl was extremely, extremely sick. She was diagnosed at 6 weeks old with Type 1 SMA and fought so hard through her much too short life. Addie passed away in December at 20 months old.

Kim is always so honest and open with me and I can't thank her enough for sharing many intimate and private stories and details. I could go on and on but I am just so thankful that she is in our life and I look forward to remaining friends for a very long time.

We only cried twice which was great. I was expecting waterworks the whole time. The funny thing is that when you live this every day I think that a part of you becomes desensitized to it because we talked about so many really serious topics as though we were discussing the weather or the latest celebrity gossip. Death, sickness, extremely hard medical choices that we have to make, DNR's, emergency situations. doctors...the list goes on and on. I found it comforting that we both absolutely love certain doctors and also had the same complaints and gripes about other doctors. Andy and I share with Kim and Greg so many of the same views on how we want to deal with this disease and how far we are willing or not willing to go. It validated many of our decisions and made me even more confident that we are doing the right things and that we will continue to make the right choices in the future.

Thank you for driving all the way here to visit. It was amazing and I look forward to getting together again soon. Kim went out and bought three of Addie's favorite books to give to Owen. It was incredibly thoughtful and very meaningful to me. I will treasure them always!

No News is Good News !!

2009-09-11T16:47:00.000-07:00

It has been quite a while since I have posted on Owen's Blog, and the reasons for that are numerous... First, Heather does such an amazing job writing that it really does not make sense for me to follow up with the minor stories, secondly ( and this is great... ) we have been really busy enjoying our summer, as evident by Heather's last posting of pics. Lastly and most importantly Owen's health has not had any significant declines over the summer, and we have truly come to realize that in the world of SMA "No News is Good News".

This is not to say that he has not had one hell of a difficult time this summer, with his feeding issues and his inability to digest a meal without vomiting, but for the most part his breathing and respiratory issues were OK for the summer. We will have to keep our fingers crossed for the winter.

We recently returned from our SMA clinic with no new news regarding Owen's condition, and that is good... his doctors want him to use his BiPap machine a little more ofter due to his chest walls sinking in a bit since his last visit, and he was fitted for leg braces which will assist him in standing in his stander. We even got to pick out our own design for his braces ( we went with the New England Patriots !! )

Owen is scheduled for another procedure next week where they will be swapping his feeding tube for what they call a MicKey Button. It will serve the same purposes as his tube but will be flush to the skin and a bit more discreet than a twelve inch length of tube. It is only an office visit, but we have been warned that it is very painful. I am sure he will do OK because he is a little trooper.

I really did not intend on being long winded, but my main intention for logging on and posting something was ..... As I have posted before : Our friend Steve Taylor will be running in the North Face Endurance Challenge on September 19th in Washington DC. This is a 50 Mile race !!! Steve is currently accepting pledges for this race in order to benefit the Fight 4 Owen Fund and SMA ! You can pledge a one time simple donation or pledge per mile. We are very grateful for Steve choosing to raise awareness for SMA and help Owen by raising money. We are asking that those who have not yet pledges anything to please do so. Steve is leaving Thursday for the big race. Please Contact us or Steve directly if you wish and make a pledge, I know that Owen would appreciate it and it would be even more motivation for Steve to make the Fifty Miles...

Feel free to contact Heather or I in order to pledge or make a donation via phone, email or any other means !!!

GOOD LUCK STEVE !!!!

Owen and the entire Simmons family will be with you the entire way !!! (although I will be the one keeled over throwing up on the side of the trail after mile three !!!)

Summer Fun

2009-08-31T12:03:00.001-07:00

New Medications

2009-08-31T11:49:00.000-07:00

The past two months have been very tough on Owen's digestive system. He has the impacted poop at the end of June and things haven't been great since then. We finally got his constipation under control with two medications and a daily dose of prune juice. Owen was vomiting daily due to the severe constipation. Even after we cleared up the pooping troubles...he has remained vomiting almost once a day. Some days more and occasionally we skip a day.

He has had a major increase in gagging, chocking and spitting up. It is a big change for Owen and we have been trying to figure out just the right combination to alleviate his discomfort. We began with a switch in his formula from Pediasure to Peptamen Jr. Peptamen is a partially digested formula which we thought would leave Owen's system more quickly; which would ideally stop the vomiting. That did not work and since the switch we have noticed no change.

The next step is to add two medications. One will be for reflux and acid. The other will be to empty out his stomach faster. We hope that these additions to our daily routine will help Owen. We never imagined O would be having all this trouble with his feeding and eating. It just wasn't something that we thought would become such a problem. SMA affects so many different parts of the body and you just can never tell what it is going to do next. It is frustrating because there are so many things to worry about and it feels so chaotic when for a period of time. You are totally focused on one thing and then before you know it you move on to something completely different.

Hoping this will get straightened out and Owen will be more comfortable and stop vomiting. We have a visit with the SMA clinic on Thursday. Owen will be seeing all his doctors and his nutritionist to go over our care plan and tweak anything that might need adjusting. He will also be participating in his second session for the clinical research he is enrolled in.

Dr's Home Visit

2009-08-22T18:32:00.000-07:00

On Thursday we had a home visit with Owen's pulmonologist Dr. Graham and his respiratory therapist Lauren. They are an amazing team. They have provided Andy and I with support and also have shared their vast amount of knowledge with us. We have learned so much from them in the past 8 months. They are always on hand to answer our emails or phone calls. The best part of working with such a great duo is that every choice or difficult decision we had to make concerning Owen's care has been unanimous among us all. We have never had to fight for anything ever. It is a blessing for us that Owen has such wonderful, smart people helping us on this journey.

Rob and Lauren told us they would be in the area on Thursday and scheduled a time to come to our home. This is the second home visit they have done and it is really such an awesome thing. They come to our house and examine Owen in his comfort zone. We get to all sit down on the couch and discuss all the important areas of Owen's care. It is relaxed and laid back and really great. It is such a good feeling to not have to drive to Boston and also to not be in a sterile exam room while discussing very difficult topics.

We had lots to talk about. I began with giving them a run down on all the events since we had last seen them. Since many of his issues have been GI related we did talk about them and brainstorm about what our next steps should be. Rob ( Dr. Graham) also commented on the increased caving in of Owen's upper chest wall. If Owen has his shirt off his upper chest sinks in and below his rib cage his belly balloons out. This is caused by Owen's lungs not opening and expanding like they should and also from his increased diaphragm breathing. He wants us to try and get Owen wearing the Bipap all through the night, every night.

This will be a major change for Owen. As many of you know we had an overnight stay in June to get Owen's Bipap and to learn all the details of how to use it. Since coming home with all our new equipment Owen's o2 levels had been pretty steady and since we ended his oral feeds his respiratory condition had improved. That being said his o2 levels have started staying lower at night the past few weeks and we know this is something that needs to be done. It is such a major chance for Owen and also for us to accept. The equipment is cumbersome and uncomfortable for Owen. It is something that we are dreading and after all our attempts when we first returned home with it, we know it is not going to be an easy transition.

That being said...we know it is Owen's best interest to start wearing it nightly. It will expand his lungs and hopefully help keep his from getting sick. With the fall and winter coming we are expecting and aware that Owen will probably catch some form of cold, flu etc. We pray that if we does come down with something it will be minor and hopefully something Owen can fight through without too much difficulty. The reality of the situation is that a simple cold or flu can be deadly to a child with SMA and we are all anxiousabout the upcoming sick season. Anything we can do to help keep Owen healthy is a top priority. So back to the Bipap we go. I am sure many updates will follow with all the details...wish us luck!

Other than discussing all the ways we can try to keep Owen healthy and the new routine with Bipap, the visit went very smoothly. We and Owen adore Rob and Lauren and are so thankful to have such intelligent and compassionate professionals working with us. We will see them the first week of September when we go to Boston for the SMA clinic. Also Rob wants us to get Owen trying out the power wheelchairs at that visit. He will be flying around on wheels before we know it! The goal is to order his chair around the time he turns 2.

Busy Week!

2009-08-17T17:34:00.000-07:00

We have quite a jam packed week in the Simmons household!

This morning we had a nursing visit...and a visit from his PT Sue and the rep from the equipment company. They adjusted Owen's stander and it finally fits him perfectly! He looks great in it and we are hoping to have him in it twice a day for 30 minutes each time.

We then had a visit from Owen's other therapist Kathy in the afternoon! He played with shaving cream and had so much fun! Plus it made the house smell yummy!

They this evening Andy and I snuck out for two hours and had a date night at the Pasta House ( we had a gift certificate!!...nothing better than a free dinner!) It was really good and we enjoyed getting a little time to talk. It is important for us to make time for each other even though things are always so crazy around here. I am reminded just how lucky I am to have such a supportive and funny husband! ( And might I add just as cute as the day I met him 6 years ago!)

The rest of the week is shaping up to be pretty packed. We have nursing visits, therapy, a visit from Owen's pulmonologist and respiratory therapist and also someone coming over tomorrow to discuss some grants for wheelchair vans.

We have lots to do but it is all for a good cause! It takes a lot of people and energy to keep Owen healthy and get him everything he needs. Thanks to everyone who helps us keep everything running smoothly! We could never manage everything on our own. We have a huge support system and team of talented professionals who help Owen. We are very thankful for the amazing people who have become a part of our family!

Thinking

2009-08-13T16:56:00.000-07:00

Since Owen hasn't had anything too major going on lately (knock on wood!!) I feel like I have had more time to process things. My mind isn't quite so panicky and I haven't really been in fix it mode like the past few months.

I have been trying to identify how I am truly feeling about Owen's disease and how it has affected our lives. I still can't quite come up with a word to describe it. I guess it is a mixture of part sad, part angry and part apprehensive of the unknown. At the same time I am totally accepting of what we are dealing with.

I am sad that our beautiful little boy has so many challenges every single day of his life. I am mad that it is so hard for him to do even the simplest of tasks. I mourn that he will never experience so many amazing things that life has to offer. I am angry with people that stare at him in his chair like he is less than them. I get pissed off when I see shitty parents with healthy kids. I get frustrated that I have to plan every minute of our life around meds, feedings, and nursing schedules. I worry about the fall and winter and how it will affect Owen if he gets sick with a cold or flu. I fear how much harder things will get as Owen grows and gets heavier and harder to hold...pick up...move etc. It annoys me when people complain about petty things. I think every single day about how my boys will never wrestle...or play football together...or run around in a pile of leaves...or make a snow fort...or jump in puddles...or climb trees. I cry over the fact that very soon Owen will know exactly how different he is.

At the same time I am-

So amazingly proud of how tough Owen is. I am inspired by his good nature and enchanted by his big smile and loving eyes. I am determined to do everything I can to make his life better. I am challenged to find new ways of looking at things and new ways to help Owen experience the wonderful parts of life. I am so thankful that we have two really great boys and know that even though their relationship might not be textbook they will teach each other lessons that will forever shape their character. I am hopeful that people who meet Owen might gain some insight on people with disabilities and be more tolerant in the future. I am tremendously thankful that we have found three nurses who adore our little boy and have helped me more than I ever imagined. I am so glad that Owen was born to Andy and I because I know that we are great parents and he will have a rich and happy life however long it may be.

I am truly at peace with Owen's SMA and how it has drastically changed our lives forever. Some days are better than others and I know that no matter how prepared we are their will be surprises and challenges in the future. It feels like we have been living this life forever and sometimes it is hard to think it has only been 8 months.

Bad Blogger

2009-08-11T14:10:00.000-07:00

Sorry to all our blog followers: I have been slacking lately!

I don't really have a good reason other than I just didn't feel like it. I have been so tired lately and by the time I can actually sit down to write a post...I just don't have the energy to even think about it. I apologize and will try to get on here more often.

To update you since my last post, We spent two weekends ago in the ER with Mr. Owen. Turns out he had a double ear infection which was exactly as I suspected. He had all the telltale signs...fever, very crabby. So at 3 am I called my mother in law who came over to stay with Adyn since Andy had gotten called out for work. I headed over to St. Lukes and 3 hours later left with a prescription. I had went to the ER because Owen had been vomiting quite a bit and I wanted to confirm it was his ears and not something else.

We went to Owen's GI doctor two weeks ago and they told us that Owen had gained too much weight. She cut back his feeds and thought that would help with all the vomiting he has had. ( At least once a day for the past month and a half!)

Turns out that didn't seem to do the trick so we are waiting for all the paperwork to go through with the insurance but we are switching him to a new formula. Peptamin Jr. which is a partially digesting formula that will hopefully be more gentle on his system. At this point I am discouraged that he has been vomiting so much and hope the change with help.

We went to Dr. Simmons his pediatrician yesterday and Owen's ears looked clear. He has lost a pound in the past two weeks which is quite a bit. Also we talked about Owen's increased gagging and coughing. She is going to put in a call to the GI doc and inquire about some reflux medication. I really think that will make O more comfortable and am hoping he can start that soon.

So that is the basic update. Andy has been working like crazy the past few weeks so I have been very busy at home with the boys. I have some really cute pics of Owen's first time trying out the pool. When I have a few free minutes I will get them on here. Also a big thank you to Jimmy Estrella and Scott Alves for organizing the softball tournament for the two Owen's. It was a great success and we are thankful to have such supportive friends.

2009 Softball Tournament

2009-07-20T13:06:00.000-07:00

Thanks to our good friends Jimmy Estrella and Scott Alves as well as Jimmy Kummer, We are pleased to announce !!!

The New Bedford Police and Fire Unions are Hosting

2009 Softball Tournament

August 8th and 9th

Ashley Park & Jones Beach

Softball Tournament to benefit Owen Simmons & Owen Costa

Two Divisions (Competitive and Recreational )

Guaranteed three games . Entry Fee for the two day Tourney is $200.00

If your on our site, then you are probably familiar with Owen's battle, but here is a little information on Owen Costa.

Owen Costa was born on March 29, 2005 and like Owen Simmons, appeared to be a happy and healthy little boy. On July 3rd 2008 Owen Costa was diagnosed with Duchene's Muscular Dystrophy. Duchene's Muscular Dystrophy is a genetic disorder that gradually weakens the muscles throughout the body. A child with Muscular Dystrophy loses the ability to walk, sit up right, breath easily and move their arms and hands. More information on this horrible disease can be found at www.mda.org

There is only one thing better than helping Owen and that would be helping TWO Owens at the same time ! Please come out and have a great time and pass the word about this event.

To register please contact Jum Estrella at 508-326-6105, Jim Kummer at 774-263-8686 or Scott Alves at 508-617-1381. registration is due by August 3rd.

Thanks ! Andy

7 months ago

2009-07-18T07:01:00.001-07:00

7 months ago today Owen was officially diagnosed with SMA. It feels like much longer than that though. I can barely remember our life without the machines, therapy, doctors appointments and constant worry.

I haven't posted in a few weeks because I just needed to take a breather. June was a tough month for Owen and for us as well. We stopped his oral feeds and went strictly to g-tube feedings. We got Owen's Bipap machine. We had the horrible week of Poop Watch 2009. It was just draining and stressful. After we got Owen to pass that large mass of poop that was causing all his vomiting and discomfort, he seemed to be pretty happy. I just wanted to enjoy our family and spend as much time together while Owen wasn't struggling with anything major ( other than all his every day struggles that now seems so normal to us). We have gone for a ton of walks- which Owen just loves...we have watched movies together in our beanbag chairs...we have blown bubbles...and played in the sandbox...we have read from our large collection of books. Basically we have just enjoyed our time together.

It felt so nice to be able to not be on the phone or emailing his doctors...or googling things and trying to figure out what to do next. Owen since getting diagnosed in December, has declined much more rapidly that we anticipated. We knew it was progressive and we had read all the horror stories of children with SMA but I just don't think we thought it would affect Owen like it has. He is much weaker physically than we first thought, his feeding troubles came on much faster than we ever imagined, we have many more machines than we thought we would at this point. That being said he is happy and has stayed relatively healthy respiratory wise which is our major worry...we know that his respiratory health will be what determines how long our sweet, beautiful little boy will be with us.

Owen after having a few good weeks has started vomiting again. We are not sure what it could be this time and will be heading up to see his GI doctor in Boston. His constipation seems much better due to the new meds he is on. We aren't sure if he is digesting his feeds more slowly and that is causing some back up or if it is a reflux issue. We shall see.

UPDATE

2009-06-29T17:25:00.000-07:00

You know that people read your blog when we attended my best friends wedding on Saturday and at least 20 people approached me in the Salve Regina Chapel and at the reception and asked if Owen had pooped. Not..." Hey, How are you?...or "Oh, you look great"...or " Nice to see you". People were rushing up to ask if Owen had pooped. It was pretty funny.

For everyone that I didn't get to see at the wedding. Yes, Owen FINALLY pooped. On Sunday he had another enema and that seemed to be the magic thing ( even though he had already had two previously). He has not vomited and has resumed his normal eating schedule after a few days of half strength feedings. He is much more himself and definitely more comfortable. I have never been so thrilled to smell a huge stinky diaper!! And trust me it was many more than one stinky diaper!

Thanks to everyone who has been following Poop Watch 2009. It was a long few days and was stressful for all involved! Happy to say that our sweet little guy is smiling and laughing again! Miracles do happen! Thanks to all for Praying for Poop!!!!

Also, I quick congratulations to Jessica and Seb. The wedding was beautiful and we had a great time. ( I was a bit tipsy...I was drinking red wine and it was just so delicious! Hey I guess I needed to relax a bit...hmm maybe I relaxed a bit too much!) The food was delicious! I was so thrilled to actually sit down and eat a full, hot meal- and it was lobster and filet- my faves!! Andy and I wish them a lifetime of health, happiness and laughter! Also the sound of pitter-patter ...get on the honeymoon baby Mr. and Mrs. Golino!! I want to be an Auntie!!!!

Poop Watch 2009

2009-06-25T12:41:00.000-07:00

disclaimer: the following entry is all about poop...if you are eating check back later!

We are still waiting to see some poop at the Simmons household. Owen has had two enemas, tons of prune juice and Colase. Still nothing. Dr. Graham just called to check in and is ordering Cenecot. ( I could have that spelt totally wrong!) It is supposed to irritate his bowel and hopefully get things rolling. If not we are going to have to head to Boston for them to try and help O. He is extremely, extremely fussy and irritable. This is totally not my little sweetie and I feel so badly that he is uncomfortable. I wish I could make him feel better and we are trying everything. Hoping we can manage this from home and not have to go to Children's. Rob ( Dr. Graham) said that when it finally starts it is going to continue for a while. I guess when I pick up the prescription I should get another pack of Pampers for back ups! I am hoping that my night is filled with lots of dirty diapers!! Say a prayer that Owen will poop and lots of it!! Stay tuned for more updates from Poop Watch 2009.

Very Bad Week

2009-06-24T19:05:00.000-07:00

This past week has been tough on all of us. Owen started vomiting last Monday. He has a few days where he was fine and then since Friday has vomited 6 days in a row. He does not appear to have a stomach virus. Nothing new to his feeding schedule...we are venting his g-tube just as we should and have been watching him like a hawk for any changes. There appears to be no pattern to the vomiting and it has been once a day each day...at different times- morning, noon and night. During feedings, after feedings...absolutely no pattern. It has been nerve wracking for us because we already were doing all the things we were supposed to and it is not helping.

Today was the worst day so far. Owen woke up this morning after a decent night and just cried all morning. He was so weak and could not even keep his eyes open. He slept the whole morning without even moving. It was very scary.

I took him to see Dr. Simmons and thought he might have another ear infection. Turns out the ears were fine and he tested negative to a battery of tests. She felt a large, hard mass in his belly that she had felt a few weeks ago. She thought it was impacted stool and wanted us to get an X-Ray. She consulted with one of his doctor's in Boston and came up with a game plan. We went for the X-ray and it came back that is was a severe case of constipation.

We came home and gave Owen and enema. That did nothing whatsoever. Owen had been on strictly Pedialyte for the past 24 hours. This is what we believe caused Owen's lethargic behavior due to him not getting his usual calories. We got the OK to start him back on the Pediasure which is his only source of nutrition.

Owen had his 4pm feeding and his 7:30 pm feeding. He was extremely fussy and I just could not console him. He felt warm and had a slight temp of 100.00. I picked Owen up to try and rock him and he proceeded to vomit everywhere. Poor kid was retching so badly I cried the whole time. He was just so miserable...I was covered, he was covered...it was quite the scene. I got him washed up and comfortable and he seemed to feel a bit better after getting all of that out. We are thinking that he might have some kind of blockage that is causing all this vomiting. We will be calling Boston first thing in the AM to try and get him some relief ASAP. We are giving Owen only Pedialyte through the night for his 8 hour feed and hope that we can figure out what the problem is and get him to eat very soon. Owen can not afford to lose any weight and the vomiting is taking a lot out of him. It is scary and frustrating and we hate to not be able to help our sweet little boy.

Happy Father's Day!

2009-06-21T18:45:00.000-07:00

Our boys are so unbelievably lucky to have such an amazing father. Andy truly is one of a kind. He has far exceeded my expectations. My own real father was less than ideal and Andy could not be more different...for that I thank him from the very bottom of my heart.

Andy is one of the hardest working people I have ever met. He has juggled a very demanding job, long hours, going back to school to finish his Bachelor's degree ( two more weeks!! woo hoo!!!) in addition to all the demands that Owen's disease has brought to our lives. He worked tirelessly to pick up the slack financially because my presence is really needed with Owen. He never complains . I am just so thankful that I married such a dedicated, smart, and hilarious man...not to mention that he is pretty easy on the eyes!

Our boys are so in love with him and light up whenever he is around. They are so fortunate to have Andy as a role model and I know that his strong presence in their lives will help them to grow into fine young men. He has been to every single one of Owen's doctor's appointments and has been involved in every aspect of Owen's treatment. He has taken Adyn for many special outings and adventures to make sure that he feels special as well. Our family is so blessed to have him...love you so much Andy!

Also Andy and I are very lucky to have two amazing men in our lives-

Dick is Andy's father. He is Grampa to Adyn and PaPa to Owen. Dick certainly has softened in the past few years. When I first starting dating Andy, Dick he was a wisecracking guy that wasn't very emotional. He started getting there with Adyn and Owen has pushed him over the edge! He loves our boys very much and would do anything for our family. He comes by and check on he almost daily...sometimes he even bring me lunch!! Adyn loves going to car shows with him and Owen absolutely beams when he is around. We are so thankful that we are so close and are very blessed to have him in our lives. We have shared many happy memories together!

Richard is my mother's husband. I hate calling him my stepfather because it doesn't justify how great he is. He has impacted my life more than many people's biological fathers have. He treats me like one of his own children and for that I am very thankful. Not to mention that his two children and their spouses have become family to us as well. Richard has always been there for me...even though I am not his blood child he has shown me the love of a real father. Our boys adore him and love playing with him. He is very patient and Adyn loves listening to all his stories! I love him very much and am so grateful for our strong connection. Also I can't imagine my mother happier than she is now..thanks to Rich!

As you can see I wanted to acknowledge the wonderful men in our lives and thank them for everything. Andy, Dick and Richard- you are three exceptional fathers- and I love you all very much!

updates

2009-06-20T14:49:00.000-07:00

The last few weeks have been tough on us for sure. We have had to totally take Owen off of his oral feeds and have worked on introducing the Bipap to our routine. Many big changes in a short amount of time.

Owen is waking very often at night and the lack of sleep is starting to take a toll on us. Owen is hooked up at night to his feeding tube that runs 8 continuous hours as well as his oximeter which measures his oxygen levels and heart rate. We are also starting to try and put Owen on his Bipap at night but he has been resisting it so we are using it for periods of time during the day to try and get him more comfortable with it. Owen also is a light sleeper and wakes to be repositioned continuously through the night. Between his crying because he is uncomfortable and his alarms going off to let us know about a decrease or increase on the oximeter it is a very restless night for all of us. We are going to order Owen a sheepskin topper for his crib in hopes that it will provide Owen with more padding which will be more comfortable on his little body.

Owen's new trouble has been with vomiting. He has vomited three times this week for no apparent reason. He isn't sick...no fever...no coughing or choking. It is a bit strange to us and we are trying to figure out exactly what is going on. He hasn't changed his feeding schedule and we have not increased the amount of food he is getting. We are pretty conservative with what we are giving him and also giving it to him over a longer period of time to ensure that he doesn't run into problems. We really are a bit confused by this new development and have reached out to his team to try and come up with a solution. We shall see...Owen never fails to surprise us!

2009-06-13T06:47:00.000-07:00

Some of you may remember the story of Owen's chair. Two children with SMA had the chair before Owen. Ethan and Addie both had type 1 and both have passed away. We have been in contact with both families but have recently become much closer with Addie's parents. Kim and Greg have been absolutely amazing to us in the past few months and have provided us with advice and support. We have many of the same goals for Owen that they had for Addie. Thank you so much...words can't explain how much we admire you and respect your opinions.

When I look at Addie's pictures I see the same sparkle in her eye that Owen has and I feel very connected to her. I wanted to share my favorite picture of Addie ( i hope you don't mind Kim!) This was taken by the very talented Michelle Carr who also took all of our amazing family pictures a few months ago.

Also the following is taken from Addie's website and I wanted to post it. Even though Andy and I are still searching for where we fit in the religious community it have me such a sense of peace and comfort. Sweet little Addie girl truly was a brave little soul. She went through more in her short time here than any child should have to go through. In spite of her hardships she was a vibrant, funny little girl and I am so thankful to have met her parents.

The Brave Little Soul By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

BiPap

2009-06-11T05:20:00.000-07:00

Sorry I am a bit delayed in writing about our hospital stay. I have just been tired and didn't really have the energy to sit and think about what to write. So Sunday night we stayed at Children's and did Owen's BiPap trial. Things were a bit rough at the beginning and Owen really resisted having the mask and all the equipment on his face. He screamed for a while. We decided to give him a break and let him relax. It was heartbreaking to see how upset he was.

After Owen finally fell asleep ( around 12:30am) we tried it again and it went better this time. He fussed for a bit but then settled to sleep. He woke up every hour and we needed to reposition him ( which we have to do every night) and we adjusted the mask a bit and then he fell back asleep. We left it on for about 5 and a half hours total before taking it off totally. It was a lot to learn but like everything else after a few tries I am sure it will become second nature.

Since returning home we have tried the BiPap on Owen for short periods of time to get him used to the mask and not so scared. I have been putting it on him and reading book after book to keep him occupied and not thinking about the huge mask on his face. I will try to post a picture of Owen on the BiPap later today. He seems to be adjusting to it and I am sure it will just take some time.

Our hope is that he will wear it at night and that we will not have to have him on it during the day when he is awake. Of course that will be decided by Owen and how he does. As Owen's disease progressing we will have to reevaluate our goals and do what is best for Owen. That is always the number one goal. To have Owen be as happy as possible and as comfortable as possible. We know he needs a lot of medical intervention but we are trying to let Owen tell us when it becomes too much. We introduce machines and as of now they have helped Owen tremendously...when the time comes and the machines prove to be interfering with his quality of life then as I said we will have to rethink things. It certainly is not easy ...but in spite of all the hardships and things he has to endure Owen continues to smile and be a happy child. We are amazed at our brave little boy and so inspired him.

Our weekend plans

2009-06-05T14:34:00.000-07:00

Late in the afternoon Sunday we will be heading up to Children's for an overnight stay. Owen will be introduced to the Bi-Pap and will spend a night on it. Andy and I will learn all about the machine so we can take care of things when we return home. The good part is we are staying in the MICU which was where we were when Owen had his G-tube put in. It is a nice quiet floor and PRIVATE rooms!! Definitely good news! Also they had an amazing staff last time we were there and we hope it will be the same this time around. As I ( and I am sure Andy) recall the nurses and doctors were all terribly good looking...it was like being on the Grey's Anatomy set!

We know that Owen probably will not be too thrilled with the addition of the Bi-Pap but we think we are making the right decision for him. He has had a rough few weeks and just hasn't seemed himself. He is crabby and more irritable than usual and we hope that he will get much better quality air when he is sleeping which will in turn hopefully allow Owen to be happier and have more strength through the daytime.We will update you when we get back.

A few updates

2009-06-04T15:00:00.001-07:00

Quite a bit has been going on in the Simmons household the past week. Owen has been strictly tube fed and it definitely has improved his coughing and choking. We were not even too upset about the loss of oral feeds because he just appeared so much more comfortable.

We have the oximeter and Owen has been wearing it through the night and partially during the day. His O2 numbers at night have been on the low side hovering around 93-95 and dipping lower at times. He usually needs repositioning to bring them up. His day numbers have been pretty consistently good. His heart rate has had us a bit confused. He usually is somewhere between 108-125. The past few days and nights is has shot up to and stayed for a long period of time at 150-175 without a specific reason. He does not appear in pain, has no fever and is not crying. It is strange to us and the nurses. Owen's doctors think it could be that his Carbon Dioxide numbers are high, or due to his decreased lung capacity, or possible constipation or pain. We are keeping a close eye on it and looking for any pattern that might show us what the cause is.

We have a stay scheduled for either Saturday or Sunday night at Children's Hospital. Owen will be put on the Bi- Pap for the first time. This was not a decision that Andy and I made lightly. We know that this is yet another way we have to respond to Owen's declining health. He will wear it only at night for the time being and we in a perfect world would like to limit him to night and naps wearing the mask. We know that if he is sick or gets very weak we might have to loosen our goals a bit.

this is a description of the Bi-Pap take from one of the SMA sites:

BiPAP (Bilevel Positive Airway Pressure) uses a nasal mask with a cap, which fits over the head to hold it in place over the nose. BiPAP provides a higher volume of air into the lungs during inhalation and inflates the lung greater than what the person can do on their own. During exhalation, the BiPAP pressure drops so that air can passively leave the lungs. The BiPAP machine can sense when the person is taking a breath and give the breath in synchrony with the individual. A respiratory rate is also set so that the BiPAP gives a minimum number of breaths per minute. The person can breathe above that rate and the BiPAP will deliver more breaths.

Andy and I have thought long and hard about what kind of life we want for Owen. This does not include any sort of invasive treatments and we as of right now are not willing to trach Owen in the future. The Bi-Pap is the last form of assistance that we want to try Owen on. He will not like it but hopefully will adapt to it after some time. We do not want to have it on him in his awake hours and will try to keep that from happening. As I said before, we do not know how rapidly Owen's health will decline and we are certainly open to reevaluating our ideas but we feel like we want Owen to lead and tell us when enough is enough as far as the medical interventions go. The Bi-Pap is a slippery slope because we don't know how dependant Owen will get on it and what he will be like when taken off in the mornings. Guess it is something we will have to wait and see. Like everything that has come before we will learn it, adapt to it and hopefully get on with enjoying our time together.

Also since I haven't really discussed it too much thus far, our nursing help has been outstanding. So far we have two and will be meeting a new one next week. They are only here a few hours a few days a week, but so far their presence has been extremely positive. You all know how hesitant I was and maybe we have been spoiled but we truly have smart, professional, compassionate woman who adore our little boy. We are thrilled with their addition to our family and look forward to the guidance they give us. Also it has allowed me to spend a lot more special one on one time with my big guy Adyn. We play outside together, garden, read...it is just great for both of us.

One final bit of news which is great news is Owen had a weight check today with Dr. Simmons and he is a whopping 18 lbs 11 ounces. I was shocked! The tube feeds are doing something right because that is finally a substantial gain. After months and months of working on beefing him up we made a small step in the right direction. He is still not on the charts but definitely moving closer.

Wheelchair van shopping

2009-05-31T12:06:00.001-07:00

Andy and I took Owen to check out some vans yesterday. We found one that we really loved an 06 Toyota Sienna with all the bells and whistles. It only had 19,000 miles and was in excellent shape. I guess we didn't do enough research because we were shocked to learn it was $40,000. Definitely more than we wanted to spend!! They showed us an 09 that just sold for $69,000 ( for a caravan!!) Seriously?? For 70 grand I would hope to be driving something a lot nicer than a Toyota minivan!!

So we are still looking around and trying to find something more reasonable. We don't need it right this second but it would make our life much easier. It would allow me to take him places much more easily. We will continue our search...

Also Owen's bath seat arrived via UPS and it is really nice! Heavier and a bit bigger than I pictured but just great. Owen took his first big boy bath this morning! He cried the whole time!! I think it might take some getting used too! It makes things much easier on us so that is a plus! Also it keeps his safe which is the main concern! I will try to get some pics of it on here soon.

Swallow Study Results

2009-05-28T06:26:00.000-07:00

We packed up and went to Children's yesterday for Owen's swallow study. It was actually a pretty quick test and we got the results right away. They began with putting Owen in a special chair and getting him positioned correctly. We brought some food from home and began with a bottle of Pediasure. They put barium in with the drink and Owen was absolutely not having it. He did not want to drink it at all so we moved on to the baby food.

It was pretty cool and we got to watch the monitors and see the food go into his mouth and right down into his belly. The pudding and baby food went down the right tube and into his belly like it is supposed to. Owen took just a few sips of the bottle and immediately the tech stopped the test because we could see that it was not going down the right tube but into his lungs.

So the verdict is absolutely no liquids by mouth and he can have a few bites of yogurt or pudding. The test did show some pooling of the food in his throat and that is the problem Owen was having last week. So he will still be mainly fed through his tube but we can give him a few bites for pleasure of the thicker consistency foods. As long as we don't give him enough to cause the pooling problem then he should be OK. Andy and I are very hesitant to give Owen too much by mouth because he has been so much better the past week and we don't really want to upset things too much and cause all the problems he had been having. So we will go slowly and see how things go. We will go back in 4 months to reevaluate and do another swallow study.

Also we are getting a shipment today of a few new things for Owen. We will be getting an oximeter to measure Owen's O2 levels and also supplemental oxygen for emergencies. Not something I ever imagined would be in our babies room but it will be good to have. Also they will be delivering a few cases of the Pediasure for Owen's tube feedings....I only had to call 5 times to make sure it got delivered. I was not happy and totally annoyed. We will see if it comes today- I do not want to have to call again! What a waste of my time- I definitely have more important things to do than call for three days and get transferred and put on hold and wait and have no one know what is going on. Ughhh.

On a better note, when we went to Children's yesterday we got to finally meet little Thomas Jupin!! What a sweet and adorable little boy. He is recovering from some major heart surgery and is doing awesome!! His mom Beth and I have been emailing back and forth and we finally got to meet face to face. She and her husband Tommy are great and we hope to remain friends in the future!

The new routine

2009-05-23T06:33:00.000-07:00

Owen has been NPO ( nothing by mouth) for almost two days now. He is doing better than I expected and isn't as cranky as I had though. We have been trying not to eat in from of him because he doesn't understand why he can't eat. His cough and choking seems to be better but we won't really know until Wednesday with his swallow study. The new routine is as follows:

9:00 am, 12:30pm, 4:00pm, 7:30 pm

Owen is hooked up to the feeding pump for one hour

10pm-6am

Owen is hooked up at night to the feeding pump for a continuous night feed

So technically Owen is hooked up to the feeding pump for 12 hours a day. He doesn't mind because he is watching his movies or shows and we sit and try to play and entertain him. He has been sitting in his new beanbag chair and seems pretty happy in it.

I don't know if this will end up being a long term situation but whatever is best for Owen's health is the main goal. At the same time being hooked up to a feeding pump for half of his day is not something that we think is in the best interest of his quality of life. From the start that has been our main objective. To give Owen the best quality of life that he can have for as long as he is here. We never imagined how quickly things would happen and looking back I don't know that we were truly prepared for all the things that now seem so normal to us. I guess we are just trying to be flexible and deal with things as they happen. In the end our main goal will always be to keep Owen healthy, happy and not is pain. We might have to do things differently than many other families but that will always be the objective. We know that things will continue to progress and that Owen will probably need more intervention. We will make those decisions as they come and try to be as educated and aware of things so that we are making what we feel is the best choices for our baby.

Rough Day in the Simmons Family...

2009-05-21T17:49:00.000-07:00

Owen has been coughing increasingly more in the past two weeks and has had more choking episodes as well. We have been using the Cough Machine much more and have also added deep suctioning to his routine. We use the catheters and stick them either through him nose down to his throat or just down his throat. This is to help remove some of the secretions that Owen is having trouble managing.

I have been concerned about his choking and coughing so we scheduled a swallow test on next Wednesday at Children's. Yesterday I emailed his respiratory therapist Lauren about the coughing. She called me this morning and was with his pulmonologist Dr. Graham. They have decided to have Owen not eat anything by mouth until the swallow test and to strictly be tube fed. They think that the food and liquid is pooling in his throat. They also think that Owen is having a lot of trouble with coordinating his chewing, swallowing and also holding his body in a position to eat. He is using up a lot of his energy and doesn't seem to be handling it very well. The concern is that the leftover food and liquid in his throat that is causing the choking and coughing will end up in his lungs. That would in turn cause pneumonia which is a nightmare for an SMA child to overcome.

When we decided on a g-tube for Owen a few months back we both agreed on it because he could still eat by mouth. To both of us losing the ability to eat by mouth is a horrible thing. Owen loves food and I am devastated by the thought of him not being able to eat anymore. I know that the benefit of keeping him healthy outweighs the bad parts, but it is so sad to both of us. All I keep picturing is his birthday party and not even being able to have cake and ice cream...what a shitty thing. Seriously what are we going to all have dinner together and Owen will just watch?! This is just so crappy.

The impression I got from his Dr. is that this may be the beginning of a decline in Owen's health. I think that after the swallow study we will have to end up just tube feeding him. He is also ordering a oximeter which will measure his O2 levels through the night. I will be glad to have that because an alarm will sound should his stats did too low.

In the past 6 months Owen has definitely declined much more rapidly than we first thought. We first pictured Owen in a wheelchair but otherwise pretty healthy. 6 months later he has had a feeding tube, uses his Cough Assist machine, is needing to be deep suctioned and suctioned several times a day, he is physically much weaker than we thought and now might not be able to even eat anymore. This disease just affects every part of his body. We can't get a hold on anything and we have to focus on so many issues: feeding, respiratory, equipment, mobility...it is just draining and tough to focus. We feel pulled in so many different directions sometimes. Also it is frustrating to not know how fast the disease will progress and what it will affect most. We are trying to stay positive but some days it seems like such a horrible life to live. Even though it doesn't compromise his mental function, SMA is slowly robbing our little boy of the enjoyments of his life. He is a smart, funny little boy stuck in a broken body. We want Owen to have a good quality of life no matter how long it is and every time we turn around it seems like we are thrown another curve ball.

Fun Family Day

2009-05-19T06:42:00.000-07:00

We actually all had the day off together with no nurses, therapy, school, etc. This hardly ever happens so we took advantage of it. Owen still isn't feeling great and is coughing a lot more than usual. It is not in his lungs so we are thinking it is either allergies or is the beginning of him having more trouble handling his secretions. It has been a week and we have had to cough him and suction him much more frequently than we have ever had to in the past. We were determined to get in a fun family day so we packed up Owen's suction machine and headed for the Cape.

We went to the Zooquarium in Yarmouth and had a lot of fun! There is a little pool that you can touch all the animals- starfish, hermit crabs etc. Adyn loved it! Owen's favorite thing as usual is the swimming turtles! He always lights up when we see them! They also have a zoo part that has pony rides and animals that you can feed and touch. It was a bit tough getting Owen's chair around as it is kind of like a farm setting. I kept saying that it felt like we were off-roading! Bumpy ride for Owen...but we had a great time.

Next we went down the street to the Pirate's Cove mini golf. We had lots of fun and played 18 holes! Adyn had a ball and was so excited for all the fun stuff we were doing together. Then we headed out and stopped at a cute little shack and had hot dogs and ice cream! The perfect end to a great day. It was so nice to spend time all together and Owen slept the whole way there and then both the kids slept the whole way home! How perfect. It also allowed Andy and I to talk a bit on the way home which was nice. We are always so busy and rushing around and it felt great to relax a bit and enjoy our time together. We are beyond blessed to have such amazing kids and I also feel very lucky to have a husband who is such an wonderful father to our boys.

Fight 4 Owen Pics

2009-05-14T12:49:00.000-07:00

Trying to figure out how to do a slide show...as I have said before I am far from technical...here are a few of the good ones...when I figure out how to do something fancier with all the pics I will post it!

First Nursing Visit

2009-05-14T11:50:00.000-07:00

Wednesday our first nurse came to the house. She was very nice and I think that we will get along just fine. She has a lot of experience and has worked with a SMA child before. She will be with Owen twice a week for a few hours at a time. This will allow me to get my groceries and also have some special one on one time with Mr. Adyn. I am looking forward to getting some more alone time with Adyn. We try very hard now to make sure that happens but this will let us have some fun big boy time together!

Our other nurse will be coming on Monday and I will update you when she comes. This is still a nerve wracking thing for me and I am still a bit conflicted. I know it will be good for Owen to have nursing in place should he get sicker, and also I know it will be a nice break for me. That being said, I am hesitant to let anyone handle Owen and am very nervous about having someone in the house. I know it will take time for me to establish a relationship and begin to trust the nurses. Wish us luck because I still need a bit of convincing. I hope in time I will accept that this is a positive thing for our family.

One last note, Owen went to the pediatrician on Tuesday and is now on an antibiotic. He was coughing much more than usual and hasn't been feeling himself. I am hoping this clears up and doesn't turn into anything major. He is a trooper and I hate to see him not feeling well. We have increase his cough machine quite a bit in the past few days and that with the suctioning seems to be helping.

Thoughts of a Mom

2009-05-12T06:11:00.000-07:00

Thoughts of a Mom:

Many of you I have never even met face to face, but I've searched you out every day.I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you.You are well worn.You are stronger than you ever wanted to be.Your words ring experience, experience you culled with your very heart and soul.You are compassionate beyond the expectations of this world.You are my "sisters."Yes, you and I, my friend, are sisters in a sorority.A very elite sorority.We are special.Just like any other sorority, we were chosen to be members.

Some of us were invited to join immediately, some not for months or even years.Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds.We were initiated with somber telephone calls, consultations,evaluations, blood tests, x-rays, MRI films and heart surgeries.

All of us have one thing in common.One day things were fine.We were pregnant or we had just given birth or we were nursing our newborn or we were playing with our toddler.Yes, one minute everything was fine.Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.Something wasn't quite right.Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs.Some of our children undergo chemotherapy.Some need respirators and ventilators.Some are unable to talk, some are unable to walk.Some eat through feeding tubes.Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's.We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable.

We have educated ourselves with whatever materials we could find.

We know "the" specialists in the field.We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the"treatments.We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.

Without formal education, we could become board certified in neurology,endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive and to flourish.

We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.

We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects.

We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us online. We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.We have learned that many of our closest friends can't understand what it's like to be in our sorority and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother."We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays.

We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween and we have found ways to help our deaf children form the words, "trick or treat."

We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas.We have painted a canvas of lights and a blazing Yule log with our words for our blind children.We have pureed turkey on Thanksgiving.We have bought white chocolate bunnies for Easter.And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy.We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always.We never stop believing.Our love for our special children and our belief in all that they will achieve in life knows no bounds.

We dream of them scoring touchdowns and extra points and home runs.We visualize them running sprints and marathons.We dream of them planting vegetable seeds, riding horses and chopping down trees.We hear their angelic voices singing Christmas carols.We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall.We are amazed at the grace of their pirouettes.We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.By Maureen K. Higgins

FIGHT 4 OWEN FUNDRAISER!!!

2009-05-08T16:28:00.000-07:00

The Fight 4 Owen fundraiser was a huge success! We had an estimated 800-900 people join us last night to support our family. It was extremely overwhelming and amazing! I actually was really nervous when we arrived because there were just so many people everywhere, but once I finally got myself a drink I was okay. It was such a surreal feeling to have so many people come out to help our little boy!

First I have to thank a few people that made this event a success. This list could go on for days but I will try to keep it to the major players.

DAVE AND HANK - we never could have done it without you! You both have your own families and commitments but you put everything aside and gave us your all. We are so thankful to have such great friends( even though we think of you as family!) Thanks again and I actually am a little sad that I won't have a reason to call you both 300 times a day. I am sure you will both miss hearing my voice on the other end of the phone right??!!( not a chance huh?)

Jimmy, Mike T, Gary, JR, Shane- thanks for helping sell tickets and collect auction items. Also thanks for all the help setting up!

Jeff Silva- You were the best emcee and we were so glad that you let your sense of humor shine! Great job!

James Gagne and Neil McCarthy- Thank to you for entertaining our guests with your amazing talent!

My Raffle Girls and all the Wives- thanks to you all for not leaving your posts all night! You were all so great and we appreciate you pushing the tickets! The raffle was a huge success thanks to you all! xoxo

BIG BIG THANKS to Cafe Funchal and the Da Silva family!! They were so unbelievable awesome and the food was great! They went above and beyond for us and we are so appreciative! Great job guys!

Middle House- You were so professional and I can't believe that you pulled off all the sound and audiovisual stuff in just s few short days! It is a testament to your professionalism and we will be sure to spread the word about what a great company you were to work with! Thank you!

Finally thanks to everyone who came and supported us, donated auction items, volunteered and sold tickets. We were overwhelmed by the outpouring of support and love for our family and for Owen. Owen is an amazing boy and has touched so many lives in his short time here. We are blessed to have such a great child and we were so glad that many of you got to meet or see him! ( and thanks for not touching him! we appreciate you respecting our wishes to try and keep him healthy!)

It was a great night and we will definitely be able to purchase his wheelchair van in the next few months! We might even be able to add a DVD player in there for the kids!! Also we will be donated a portion of the tickets to Families of SMA and Boston Children's Hospital Neurological Foundation. Thank you, thank you, thank you! We are truly grateful that we now will have the opportunity to get Owen some equipment that we might not have been able to otherwise. We will let you know about the van! I have a feeling Andy and I won't be able to agree on anything! We couldn't even agree on the color of his new chair never mind all the features and details of such a big purchase!!

Okay People...

2009-05-04T12:08:00.000-07:00

Alright I know I have posted something like this before...but here goes. I have installed a live traffic feed in hopes of figuring out who is checking in on Owen. It is interesting to see all the different places that people are from. My last post did not get a ton of responses and I was a bit disappointed. Do it for us...we are curious as to who is checking up on Owen and want to know who you are. Drop us a line in the comment box or post a message on the guestbook. It means a lot to us and we like to know who we are writing all these posts for. Come on don't be bashful! Even if we haven't met let us know how you heard about our amazing little boy!

Check this out!

2009-05-03T05:25:00.000-07:00

I just wanted to post a quick link to a story that was in Saturday's Standard Times. I had written a letter to the newspaper two months ago about the Dartmouth Middle School kids that raised money for Owen. They ended up printing an article yesterday along with a picture of all the awesome kids. The link is:
http://www.southcoasttoday.com/apps/pbcs.dll/article?AID=/20090430/EDU02/90430012/-1/EDU

Check it out and learn about an absolutely amazing group of kids who have been impacted by Owen's struggle with SMA. We are so proud of them and are glad that they received some recognition!

Nursing

2009-05-01T11:47:00.000-07:00

So today was quite a day. We had a visit from a case manager to determine if Owen will qualify for any private duty nursing. She stayed for a few hours and asked me every question imaginable: about every single thing he does, how ofter he poops, how much, what does he eat, when etc. etc. It went on and on.

I was very nervous about this whole nursing thing and have been for the past few months. Our therapists have mentioned to us about nursing and have tried to encourage us to get it all set up for Owen. I resisted very much at first and felt like it would be a failure on my part that I couldn't handle things. They have tried to show me that it will be good for me and allow me to spend more one on one time with Adyn. Also to do errands or groceries that are very difficult to do with Owen now that he is in his Kid Kart.

I was extremely nervous about letting someone new into our home and giving them access to Owen. He is basically only ever with me and Andy- or our mom's if our schedules overlap. Andy and I are the only ones to do his tube feedings and all his other machines. I feel like we know him the best and am nervous about a nurse not knowing all the things he likes and all the special things that we have learned about him.

The case manager after all her questions told me that she hoped I wasn't disappointed...and proceeded to tell me that Owen was only approved for 18 hours a week. I couldn't have been more excited! That seemed like a ton of hours to me but she said it was almost the minimum.

For me the main positive thing will be to spend a little more alone time with Adyn which has been tough to do...and also to not have to bring Owen into school to get Adyn. Right now it isn't to bad because I carry him in but starting in September he will have to be in his chair and that would force me to park, get his chair out, wheel him in, either get someone with an elevator key or have to park halfway across the parking lot and walk him in the high school in with all the students that are passing to their next class. It would have been a huge pain and I would have had to do it 5 days a week and in all kinds of weather. So that is a huge relief.

The next step is to find some pediatric private duty nurses and get them in the house and see how it goes. I will have to train them on all of Owen's machines and what his routines are. Our therapists have had experience with many of the local nurses so that is a help to us for their recommendations. I am hoping to find a few that just love Owen as much as we do and fit into our dynamic. Wish us luck. Also the first few weeks with the nurses I don't think I will leave the house. Maybe do some laundry and clean but not leave. I will be much more comfortable with that. This is a difficult thing for me to accept and I know it will take me time to adjust. More info in the future.

What a nice night!

2009-04-28T04:26:00.000-07:00

So someone has a birthday coming up on Wednesday...that would be me. I am going to be turning 27. I hadn't really even thought about it because my mind has been elsewhere the past few days. Birthdays don't really seem like that big of a deal anymore and I have no problem with getting older( even though I am still pretty young).

So yesterday turned out to be a great day from start to finish! I met two of my good friends from work for breakfast at the Courtyard. It was super yummy and Owen was pretty well behaved! (last time we went there he was very crabby with a belly ache). I got two nice cards and some winning scratch tickets( 10 bucks) and a beautiful new addition to my Willow Tree Angel collection. I just love it and was very surprised.

Then I came home with the boys and relaxed with them for a bit. Andy came home with a bag from Periwinkle's and I had no idea what was in it. He did a great job and got me a Pandora bracelet with two of the little boy charms! How sweet of him I just love it and I love him very much!

We met my Mom and Richard, and my sister Jessica and her husband Mike. My awesome little sister got me a Vera Bradley bag and another charm for my bracelet! Talk about spoiled! And my bracelet was getting fuller by the minute. My mother got me even more charms- I was so excited to see that she got me the angel charm and the letters A and O for my sweet boys. She also got me two more angels for my collection! All the angels that I got were very special and meaningful because the all had a mother and son or the two boys together. I love them and they make me smile every time I look at them.

As if that weren't enough we went for an amazing dinner at the Pasta House. It was delicious and we had a really nice server. We had a few bottles of wine and a ton of laughs- whenever Mike comes there is always a lot of laughter. Get a few drinks in him and it is free entertainment all night long. Let me know if you want to book him for your next party! Ha Ha!

So after what was a long week for me it was especially nice to have a stress free and really great day yesterday! I have been a bit down lately and it felt nice to laugh and smile. I was very spoiled by my family and am so thankful for their picking out such thoughtful presents that mean a lot to me.

Even though my birthday is not until tomorrow I am reflecting on how truly blessed I am. I have such a great family and we are all extremely close. I have a husband who is such an amazing man and I am thankful for him each and every day. I also have the two most beautiful, smart, vibrant little boys anyone could ask for. Even though we have our struggles I wouldn't want it any other way. I feel so lucky to have so much love around me and am appreciative of all the wonderful memories we are making together. Thank you all for a great day and for reminding me just how lucky I am.

Sad

2009-04-22T12:08:00.000-07:00

I am spending the afternoon doing some stuff for the Fight 4 Owen fundraiser on the computer. I had to type some of the auction descriptions out and was also browsing some different sites. I was checking out a few of the SMA blogs that I read and was also checking out the petition to cure SMA as I do every couple of days. There were a ton of posts about a little girl Georgia that recently passed away from SMA. I googled her and found her parents blog: www.georgialucaswpg.blogspot.com . I was reading it and just started hysterically crying. I see so many families that lose their precious babies far too young from this horrible disease. It is devastating in a way that you can not comprehend to know that your child has a disease that has no cure and will affect every muscle of his body. It will rob your sweet child of so many wonderful things.

Adyn and I played soccer in the driveway today and Owen was watching and laughing away! I look at him and feel so badly that he will never experience playing or running around after Adyn. We have two brothers that love each other so much and will never get to wrestle each other or play tag. It is heartbreaking...absolutely painful and so hard sometimes. Owen is the most amazing, happy child and I just feel like it is so unfair that he has to live like this. Pushed around...can't even sit by himself...can't feed himself...has to be hooked up all night to be fed...can't roll himself over in bed when he is uncomfortable...needs machines for everything...the poor kid's room is starting to look like a hospital...I am just having a tough day thinking about things. Usually I try so hard to be positive and think of all the things that he can do but sometimes you can't help but acknowledge that he is different and he will never have a regular childhood that so many take for granted. I am sorry if this is coming off as a bit chaotic but I am just trying to get it all down. SMA sucks!

New equipment

2009-04-20T17:42:00.000-07:00

Boy did we do some shopping today! We were visited by Mala from National Seating and Mobility. She brought some awesome equipment for us to check out and see if Owen liked anything. Well we loved everything!!

We got Owen in the stander for the first time. This was actually the first time Andy and I have watched our little boy stand up. I can't express to you how great it was to see his looking like a big boy and being upright. We take for granted how big of a deal this is! It took some work and getting him strapped in and adjusted wasn't super easy. Once he was all set and safely in it we put it in an upright position and added the tray. Owen resisted at first but once he was in it for a few minutes he seemed fine. We put his show on and got him a big coloring book and crayons and he was good to go. It was very special for us to see our little guy up and looking like a regular kid. Sometimes the little things bring the most joy!

Owen was also fitted for another chair that he will be getting and it too is really great! Owen will be the proud owner of a Kimba chair in roughly 3 months. It takes that long to go through the two insurance companies and then to be ordered and delivered. The stander will also take that long. There was some discussion as to what color we should get the chair in...I was outnumbered by my husband and Owen's PT Sue. Green it is! I was hoping for the orange but we decided that it might be a little loud! I am usually a more neutral kid of gal but the bright orange was super cute, at least the green won't draw as much attention. I guess a bright orange wheelchair/ stroller might get even more stares than we already do. No need to be a spectacle right!

We are really excited about getting Owen's new equipment and can not tell you how much this equipment improves Owen's quality of life. He truly needs something to help him do even the most basic of things. The products that we are getting are necessary and important for Owen's health and well-being. We are thankful to have great therapists that are so knowledgeable about what will help Owen and also that are willing to help us get them fitting him just right. Sue i am counting on you...so be prepared for some more adjustments when this round of stuff comes in!!

Fight 4 Owen Fundraiser

2009-04-15T19:08:00.001-07:00

The Fight 4 Owen Fundraiser at Cafe Funchal on May 7th is rapidly approaching. We have sold close to 700 tickets for the event, and the remaining tickets for the Mazda 3 raffle are also selling. I encourage anyone who wishes to attend or just buy a raffle ticket for the Mazda 3 to do so soon. We are looking forward to seeing all of our friends and family at this event and do not want anyone to not be able to get tickets.

The organization of the fundraiser and raffle is also moving along somewhat smoothly, however we could always use volunteers to help us set up the hall and raffle prizes on the day of the event, SO feel free to contact us if you would like to contribute in that way as well.

We have collected some GREAT raffle prizes (many of which I am sad to say that I can't win)=( !
This is just a quick sample of some of the prizes you may be able to win in addition to the Ipod Touch door prize and the Mazda 3.

2 Red Sox Tickets (great seats)
An Authentic Patriots jersey signed by Doug Flutie
Red Sox/Budweiser Large neon bar sign
Surf and Turf (4 lobsters &4 sirloins) from Mike's Restaurant
Florida Time Share Vacation
100$ gift certificate for local seafood
liquor and scratch ticket baskets
beautiful handmade jewlery from the Thirsty Crow
many local salon and spa gift certificates
Jospeh Abboud Blazer ( worth $500.00)
.... as well as numerous Gift certificates from area businesses and restaurants. We are also in the process of collecting some more New England Pro Sports items from the organizations. So.. stop by and try to win some great raffle prizes and at the same time know that you are helping make a difference in the fight against SMA !

Andy

Long day...

2009-04-13T18:08:00.001-07:00

Today we had not one, not two. but three appointments in a row at Children's. I was a little nervous that it wouldn't run smoothly but I was shocked at how stress free the day went. ( Hooray!) First up was a clinical research appointment. Owen is participating in a study that consists of 30 SMA kids and 30 "normal" kids. They put little electrodes all over one side of his body and send a small electrical current through his muscle and measure everything. The current doesn't hurt at all and the whole procedure took less than an hour. We were all chatting and Owen was in a good mood so it went well for everyone involved. Owen will continue with this study for the next 2 and a half years. We will go every couple of months and continue to have this same procedure done along with a questionnaire and measuring his weight , height and all that jazz.

Next up was an appointment with his GI doctor, Dr. Fishman. She is the doctor who performed Owen's g-tube surgery last month. She is very nice and we like her a lot. So she checked him out and we discussed how the tube was going. We are totally comfortable with it and are truly glad that we got the surgery for Owen. Some parents have a tough time with their child having to get a feeding tube, but for us it was a no-brainer. Owen needed to gain weight and was having lots of trouble getting enough food down to do that. This was something he needed and will continue to need even more in the future if eating becomes even more difficult than it has been so far.

The good news is that Owen has gained 1 pound 4 ounces since his surgery March 4th. That is a great sign and shows that things are going as planned. We are very pleased. He still isn't even on the charts for height and weight but he is proportional and gaining so that is all we can ask for. The bad news is that Owen is still having major problems with constipation. He takes Colace twice a day and glycerin suppositories when needed. It isn't helping him at all so that was a big concern for us today. Dr. Fishman is upping his dose to 3 ml instead of 1ml- twice a day. We will see if that helps with the # 2! We are hoping so because the poor kid is in a lot of discomfort a lot of the time and his muscles are just not strong enough to get everything out in a timely fashion. Sorry for all the poop talk but it is what it is...it's a part of Owen's health problems so I am telling it like I see it. Owen is going to kill me when he can read and sees that I am posting about his pooping for the whole world to see!

Also Owen's tube site appears to have some extra tissue that grew around where the tube was placed. She said it is common and not infected- actually it looks great. Made me feel like we are doing a good job of cleaning the site and doing what we are supposed to. After we clean it we apply Bacitracin and then a dose of zinc powder that keeps the ointment where it is supposed to be. Anyways there is some extra tissue that has grown near the tube site and while it isn't anything major it looks a little yucky. She prescribed some steroid cream that should shrink it a bit. It doesn't hurt so we figured it was worth a shot.

Last appointment was with the SMA nutritionist. She was happy with his weight gain and it seems to be on schedule with what they were hoping for. We are aware of all the things that we need to do eating wise so it was a fairly short visit. Owen has so much trouble with texture that we puree everything that we can and offer as many different things that we can make mushy for him. It is tough to get enough healthy stuff into him but we do the best we can. If we can puree it- we give it to him. The tough part is that he hates baby food and wants more mature flavors, but the baby food is the right consistency. I try to punch his food up with bigger flavors and spices and that seems to be a big hit. He loves his puddings and ice cream and yogurt...but he can't live in that so we have to get pretty creative. So far they seem happy with what we are doing, and that is fine with us. We will continue to give Owen as much as he will tolerate by mouth and continue with the same overnight feeding schedule that we have been on for the last month. If it ain't broke don't fix it right?!

Just A Reminder !!!!

2009-04-09T15:24:00.000-07:00

With everything going on in or busy lives we hope that people give us some forgiveness and understanding when we may be a little late on meeting deadlines and getting things done. The reason I say this is because I have been meaning to post this for a few weeks now.....

A friend and co worker, who many of you may already know (Steve Taylor) is planning on doing something that not too many people would ever attempt. On September 19th Steve will be running in the North Face Endurance Challenge. This is a FIFTY !!! mile road race which will be taking place in Washington DC. Steve has asked to use Fight4Owen as a sponsor and run the race for Owen in an attempt to spread awareness of SMA and raise some money. Thanks Steve !!!

Steve is going to have a table set up at our fundraiser with information on the race and looking for people to pledge miles, or find some other sicko to run this thing (....Dave Reis is the only name that comes to mind !)

We are extremely grateful that Steve would want to do this for us... we are asking that people check out the North Face Endurance Challenge Website at www2.thenorthface.com/endurancechallenge , and also stop by and see Steve at the fundraiser and pledge some miles for Steve and Owen.

Also if Steve pulls this off he is going to try and run the Western States 100 mile race for Owen and SMA !!!

Also - We will be at O'Hara Mazda in Fairhaven with FUN 107 from noon-3pm. Fun 107 will be broadcasting live and promoting our fundraiser as well as the O'Hara Mazda Mazda 3 lease that will be raffled off at the fundraiser. Come by and get your tickets for the Mazda 3, we only had 500 of these tickets and they have been going quick !!!! Hope to see everyone there !!

Andy

Curious

2009-04-09T08:41:00.000-07:00

So I am a bit curious. I am wondering who all the people are who read Owen's blog. I first started this to give updates on Owen's ever changing life and medical updates. It has become a place for me to vent and to let out my frustrations and worries about our little guy. SMA has truly changed our entire life and this has been a good way to document and explain to people that have never heard of it what we deal with everyday.

That being said, we have a counter on the blog and are astonished by the number of people who look at the blog. It makes me a bit self conscious...who is reading this?... do they know us?... how did they find out about Owen?...what do they think of us? It has been a little hard for me to be so public about my feeling and to let everyone into our lives, but, at the same time is is liberating and comforting to hear all the support that we have. I like that you can come here for the truth instead of hearing about Owen through the grapevine and possibly get some wrong info about him or his disease.

So I guess my point is...you know all about us...maybe it is time that we find out a little bit about you. If you read our blog often why don't you leave a message or sign the guestbook( if you already haven't). We enjoy seeing who is checking about Owen. Thanks for the continued support! We are blessed with amazing family and friends who have helped and cheered us on through this whole ordeal!

Busy Day

2009-04-06T16:14:00.000-07:00

My we had quite a busy day today! We started off at the Little Whaler's preschool at NBHS, which is where Adyn goes to school. It was his parent-teacher conference today. We got a glowing review from his teacher Mrs. Murphy. He is doing great and learning so much! We know that he is a great kid but it was nice to hear it from someone else. We are extremely proud of Adyn, he is such a awesome kid and we know that Owen's troubles have not been easy from him. We are very lucky to have such and adorable and hilarious child! He definitely has dad's sense of humor- ( since Andy would say that I don't have one!)

After our trip to L.W. I dropped the Andy and Adyn off and headed off to Owen's pediatrician. Dr. Simmons ( no relation) is so great and I can not say enough nice things about her. She advocated very strongly for Owen in the beginning when we were searching for a diagnosis. Even though most of Owen's medical care is now in Boston we are so thankful to have such a caring and competent doctor 5 minutes away.

Owen did not gain any weight in the past few weeks and still is a whopping ( total sarcasm) 16 pounds 2 ounces. We are going next week to his GI doc and we think that they may increase his feeds to get some more weigh on him. Owen's lungs and ears looked great which I was worried about. So the coughing and trouble with secretions is just related to the SMA not that he is sick. We will continue our routine with the Cough machine and hope that is enough to clear his secretions. Owen got a prescription for his hand splints- he totally needs these as he doesn't hold his hands in a proper position. His wrist and hand muscles aren't quite strong enough to hold them correctly so the splints will assist with that. Having good hand position will help him in the future with writing, driving a power chair and typing. Those should be here soon.

Speaking of Owen's equipment, we finally after 3 months of endless paperwork and waiting have gotten our secondary insurance. With that in place we can now put the orders in for his bath seat and stander!!! Yeah! We are totally excited to be ordering the bath chair we are in desperate need of it! It usually takes 6-8 weeks to come in so I hope to see it arriving soon! So that was our busy day...boy am I tired! Bath time and bed for everyone!

A little scare

2009-04-05T04:46:00.000-07:00

We had a little scare with Owen last night. Nothing major but still worried the heck out of me. I had just walked in the door from work and hadn't even changed yet. Andy heard Owen crying which isn't a huge deal because Owen wakes up frequently through the night for us to flip or reposition him since he can't get there himself with out our help. He went upstairs and Owen was choking and really having a tough time clearing his throat. I went up and I just had such a pit in my stomach. So we just put him down and did a Cough Machine treatment and suctioned him. It seemed to do the trick with clearing his secretions. He has had increased coughing the past two days but otherwise seems okay. No fever and I don't suspect another ear infection. We have a doctor's appointment with his awesome pediatrician Dr. Simmons ( no relation) tomorrow. So she can do a full check-up. So he either is getting a cold or this is going to become more frequent and is a result of the SMA's effect on his breathing.

While this is common is children with SMA it still shook me. I was holding him and rocked him to sleep and just did not want to put him down. I stared at his beautiful face and couldn't take my eyes of of him. I love him so much that it hurts, and the thought of losing him or him not being with us forever is just the worst feeling a mother can have. To think that this is going to be happening more and worrying about when it will get worse, and how worse will it get is the black cloud that follows us constantly. We try to stay positive and seem to be able to do that most of the time, but once in a while something happens and knocks you right off you block. Owen is the most vibrant, sweet child and it just is so painful to imagine life without him. In any case, he seems to be better but is still congested. We will be keeping a close eye on him and will update you if there is a change.

What an awesome gift...

2009-04-03T10:54:00.000-07:00

Our family has received such am amazing gift and we are so, so thankful. Michelle Carr is a local photographer who we had heard of a few months ago from another SMA family. Her friend lost her daughter River to SMA a few years ago. Since the loss of River, Michelle has donated her unbelievable talent to families of children with SMA. She contacted us a few weeks ago and offered to take some family shots. We were flattered and really thankful for the generosity she showed our family.

We went to our shoot last Sunday and I wasn't sure how it was going to go. Michelle has a beautiful studio in downtown NB. It is the coolest place, funky and lively. Loved it! We were all dressed up and I was trying to keep everyone clean and not wrinkled! It wasn't easy! We began with Owen and Michelle had creative ways of positioning him since he isn't able to sit on his own, and can be pretty floppy if not supported properly. She did a great job getting him all set for the pics. We tried to do some brother shots but Adyn was more interested in the big jar of orange jelly beans that Michelle had! Adyn had the following reasons why he just couldn't take pictures:
- He was just too tired.
-His legs were sore from growing.
-He had a frog in his throat.
-He thought he had a little cough ( complete with a phony cough sound)
Michelle was very creative and we tricked him for a few shots.

All in all we had a great time together and laughed a lot. I talked to Michelle a bit after our session about other SMA babies she has taken and it was really sad to hear of how many are no longer with their families. Michelle is giving these SMA families the greatest gift of preserving their children's memories and happy moments forever. Owen lit up in his pictures and showed his amazing personality and adorable smile. We are truly thankful to Michelle for capturing our baby and his beautiful spirit in print for us to treasure forever!

To see a slide show of our pics go to www.michellecarrphotography.com/simmons

Please think of her the next time you are considering family or children pictures. She was a delight to work with and I can't wait until we hire her in the very near future to catch our kiddos again!

Please do this for Owen...

2009-04-01T18:11:00.000-07:00

So I received an email today from someone that I already knew about. Victoria Strong is the mother of the beautiful and sweet Gwendolyn. Gwendolyn is a few months older than Owen and has Type 1 SMA. I had heard of Gwendolyn when we first suspected that Owen had SMA. There were links to her web page on some of the SMA resources we had been pouring through. I didn't read all her info but I remembered the name because it is a little different and it just sort of stuck with me.

As I said I received an email from Victoria saying that she had found me through Facebook. She read Owens site and gave me some words of encouragement. I decided to check out her site and learn more about her and Gwendolyn. Well I became pretty much obsessed with their story and blog. I continued to read almost every post and plan to finish it soon. I am amazed at their strength and determination to provide their daughter with an amazing life no matter how short it may be. They are a beautiful family and I just got sucked into their story. She updates the blog regularly and it gave a good insight into a Type 1 families struggles. Check out her site if you are interested in learning more: www.gwendolynstrong.com

The reason for this post was to urge you to sign the Petition to Cure SMA. It takes literally 30 seconds to fill out the petition and will help get the legislature to support finding a cure. The bill is sponsored by Gwendolyn's parents. Please go to www.petitiontocuresma.com. Please do it for Owen and Gwendolyn. If no more families have to deal with the devastating pain of having a child diagnosed with SMA then the 30 seconds it takes you to sign the petition will certainly be worth it! Thank you so much! Now go sign it!

What's new in the Simmons Family ?

2009-03-31T07:37:00.000-07:00

I know that we have been posting a little less on Owen's health recently and this is a good thing, we have come to realize that no news is good news in the life of SMA. This is not to say that Owen is still not fighting a daily battle with this disease.

Currently Owen's respiratory health is good and is feeding schedule seems to be working fine with the feeding Tube (hopefully we will find out if he will be breaking the 17lb mark soon!)... and most importantly Owen is happy and laughing all of the time like his normal self.

We have noticed a decline in his physical strength lately and his ability to hold is head up has worsened which is a common symptom in a disease like this which is degenerative. Owen will also be getting splints for his hands which will assist him in keeping his hand open as a preventative measure so that he does not have difficulty using his hands in the future.

In two weeks, Owen will be participating a in a clinical trial study at Children's Hospital for research to help in finding a cure for SMA. We will also be seeing his gastro Doctor for his feeding tube follow up and his nutritionist to see if his diet needs altering.

In any event, the less postings on Owen's health means that he is at least maintaining his current health and has not had any significant declines or hospitalizations.

Finally, I would like to thank everyone for purchasing fundraising tickets and raffle tickets for the Mazda 3, we are looking forward to making this a great event and look forward to seeing everyone there. Tickets are going quickly and we only have a limited number of tickets for the event and the Mazda available so if you would like to attend please contact us. Thank You !

Andy

Holland

2009-03-27T05:02:00.000-07:00

So this is one of the first things that someone showed me after Owen was diagnosed. It is sort of popular with parents of special needs. I just like it and thought I would share it with you. It is on Owen's website but I am not sure if you all have read it there. Enjoy.

WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Fight 4 Owen Tickets

2009-03-22T07:44:00.000-07:00

Hi everyone,

Just a quick note to let you all know that the Fight 4 Owen tickets are in. They came out great - thank you to Matt Brightman who did a great job in designing them. Check him out at http://www.dripdesigns.interfirm.com/.

Tickets are $ 25.00 and include music by Neil McCarthy and Shipyard Wreck. ( two awesome bands!! check them out if you don't know about them already!) There will be a appetizer buffet and a really amazing auction of tons of different prizes. Including: gift certificates to local restaurants, bars and hair salons, a free timeshare for a week in Florida, liquor and scratch ticket baskets, local seafood gift certificates, big screen plasma TV and that is only a few. When we square away all the prizes we will publish a detailed list for everyone to see.

To purchase tickets you can either contact Hank Turgeon (508) 509-7284

Dave Figueiredo (508) 889-2324

Heather and Andy (508)999-2747 or you can mail a check and how many tickets you would like to us at :

20 Brigham St. New Bedford Ma 02740. Please make out the checks to The Fight 4 Owen Fund. We will mail them out to you as soon as we receive your order and payment. If you have any questions please feel free to email us at fight4owen@gmail.com.

One last thing, if anyone would like to donate an auction item or knows someone who would like to donate something, please email us. We have a tax ID number available and a contribution form for tax time. Any item is welcome and we would really appreciate it! Thanks for all the support and we truly hope you will join us on May 7th to Fight 4 Owen!!

Fun 107 / O'Hara Mazda

2009-03-20T21:00:00.000-07:00

We are excited to inform you about a new addition to the Fight 4 Owen fundraiser. We will be selling tickets for a chance to win a three year lease for a 2010 Mazda3. ( all the special terms will appear at the end of this blog entry) The winning ticket will be drawn at Owen's fundraiser at Cafe Funchal on May 7th.

Fun 107 will be broadcasting live from O'Hara Mazda on April 4th from 12-2 to promote this raffle!! There will be complimentary hot dogs available to all who stop by. O'Hara Mazda has been very generous to our cause by advertising this raffle and helping us promote Owen's Fund. We are thankful for their support! Tickets will be available at O'Hara Mazda and are $25.00 per ticket. Imagine winning a three year lease on a brand new car for only $25.00! Awesome huh?? There will only be 500 tickets printed for this special raffle and once they are sold you will have lost your chance! Interest in this raffle has been very strong so we are anticipating the tickets to sell rather quickly. So please stop by for your chance to donate to a great cause and also the opportunity to score a hot set of wheels! I only wish we could win it...which we can't . ( I don't think we could fit Owen's new chair in it anyways !)

Terms and Conditions:

Fight4Owen Fundraiser2010 Mazda 3Sponsored by O’Hara Mazda You can win a 3 year lease on a Mazda 3 with 12,000 miles per year. Raffle winner to be drawn during the fight4owen fundraiser on May 7th at Café Funchal, Church St., New Bedford, Ma.Tickets $25.00. Only 500 tickets will be sold if less than 400 tickets are sold then winner gets 75% of monies collected and 25% goes to the fight4owen fund.Winning party must be at least 18 years old, is responsible for excise tax, insurance, maintenance and any other lease stipulations by Mazda. The fight4owen Fundraising committee is not responsible for credit checks and or credit denials. If winning party is denied credit then a cash value of 75% will go to the winner and 25% to the fight4owen fund.The fight4owen fundraising committee (comprised of 5 members) and their spouses are not eligible for this drawing.Terms and conditions apply, Any Questions contact Shane Taber at O'Hara Mazda. (508)999-0100 or at staber@Oharamazda.com

3 months ago...

2009-03-18T17:38:00.000-07:00

Exactly three months ago today we received the news that Owen indeed had SMA. We had suspected it for months but the hear the actual words were heartbreaking for us. I did feel a bit better that we had and actual diagnosis and didn't have to do any further tests, but it was still devastating.

Our life has changed dramatically in just 3 months. It seems like so long ago actually. We have traveled to Boston Children's Hospital 9 times for appointments and tomorrow will be 10 times. Owen has had his feeding tube surgery. We have gotten two braces, a Cough Machine, a suction machine, a feeding pump and all the tubes, catheters, syringes, formula, bags and other accessories. Our house is starting to look like a medical supply store!

Some days I can't believe this is our life. I have been extremely strong during this ordeal. I surprised myself quite a bit because I tend to be emotional. I actually can count on one hand the times I have cried about Owen. I worry a lot but I think maybe I am too caught up in all the stuff we are doing to really break down. I actually kept saying that I was waiting for a meltdown to happen and I was worried I was going to freak out when I least expected it.

I mentioned before that we met Ethan's mom and dad at SMA day. Owen's chair was their son's. We also received and email from Addison's parents. Addie had Owen's chair after Ethan. Both children have passed away from SMA and we had learned all about them from their amazing parents. I wasn't prepared for how much learning about those two beautiful children would affect me. I totally wasn't expecting it, but after I read Addie's story and saw her cute pictures...I freaked out.

Andy was still at work and thank god the kids were asleep because I just totally broke down. I kept staring at the pics of Addie and thinking that both children who had once loved Owen's chair are no longer with their families. I was so shocked at how much it bothered me and I just could not control myself. I feel so much for their families and they are such awesome parents that loved their babies so much. The though of them losing their children so young to SMA is just crazy to me. I just sat at the computer and could not stop crying. I know that Ethan and Addie had a more severe case of SMA than Owen seems to have but I can't even fathom life without him. Not knowing how sick Owen will get or when he will start to get really sick is extremely tough for us. We I look at our beautiful, smart, funny baby boy and the thought of living without him or him going through pain or suffering from this disease is almost too much to handle.

I want both families ( who I know read the blog) to know that even though we never got to meet your babies they have made a huge impact on our life. We are reminded to take each day and live it to the fullest with Owen and Adyn. We know that the future is uncertain and we have to treasure the time we do have together. We are in awe of your strength and grace.. Thank you for our chair and thank you for telling us about your children...we will never forget Ethan and Addie.

The story of Owen's new chair

2009-03-16T05:09:00.000-07:00

During our trip to Boston SMA day, Andy was attending a workshop on SMA research. Owen was a bit crabby so I took him to the cafeteria to give him a break. While we were sitting down a sweet woman approached me. She had an adorable little girl with her named Chloe. We introduced ourselves and chatted a bit. She then told me that she thought Owen's chair might have been her son Ethan's. It was!!! I had found his name in some of the paperwork that came with the seat- but I knew nothing of her son other that his name. She teared up a bit and told me that she was so happy to see such a adorable, happy baby enjoying her son's chair. I thanked her and told her how appreciative we were to get a chair that has helped our little guy so much!

We later got to meet Ethan's dad and he was just as sweet. Jane and Anil have two older children ( including an Aidan!) and also Chloe who was the baby she was with when we first met. ( I believe that Isabelle is the other child but I can't quite remember...sorry!) Ethan was their third child and was diagnosed with Type 1 at around 7 months old. He passed away peacefully at home at the age of 15 months old. We learned all about Ethan from his wonderful parents. They were so inspirational and very honest about their struggle with SMA. I was so thankful to hear about Ethan's story and I feel very honored to have his chair.

We received and email from them later on in the evening. They told us how nice it was to see Owen enjoying Ethan's chair. We will also get to see their family again in Higham for the SMA walk. Thank you so much for giving us such an amazing chair that has improved Owen's life dramatically. We are forever grateful!

We then received another email last night from another SMA family. Turns out that Ehtan's chair had one other owner before Owen got it. Kim and Greg had a daughter Addie who also had this chair for a while. They read our blog and were also happy to see Owen enjoying his seat. Their daughter Addie loved to take walks in the chair! I don't know to much about Addie's story other than she was a Type 1 child also. It was great to hear from her parents and very special for us to have had contact with the parents of two very strong children that have fought the same disease that Owen struggles with everyday.

When Owen was first diagnosed, we had never even heard of SMA. Now it seems that every day we meet or hear from another family that is going through the same ordeal that we are. We are struggling with the same issues: how will this affect our family and other children, how will we get the equipment that we need, what equipment do we need, what doctor's do we go to, how are we going to get the equipment around once we get it, what do we have to do to our home to make it accessible to our children, how sick will our children get, will we lose our child? These are the questions we deal with every day, and it has made us stronger to know that others are going through the same thing. We draw strength and hope from all the families that we have met that we can handle this and that we are not alone. Thanks to all the families that we have met or that have contacted us. We hope to remain in contact with all of you and we look forward to learning all we can from you.

Boston SMA Day

2009-03-15T17:58:00.000-07:00

Saturday morning we headed out nice and early and went to Boston SMA Day. We weren't sure what to expect as this was obviously our first time attending. It turned out to be a really great day and we were glad that we made it. It was a whole day conference that included us getting to meet a ton a awesome families and children, and also to attend different workshops on a variety of topics related to living with SMA.

First let me explain a bit about some of the families we met. We got to finally meet two of the families that have been so great and emailing us regularly face to face. They both contacted us through our blog and in turn we have corresponded back and forth learning about each other. The Norton family and the White family were the two that we were looking forward to meeting. They didn't disappoint and were amazing families! The Norton family has a 6 year old son Owen who has type 2. The White family has a 2 1/2 year old son Brenden who also is type 2. The boys were both so cute and real pros at driving their power wheelchairs! They truly are totally normal, smart, regular kids that just happen to need wheelchairs.

It was inspiring for us to see the children. It gave us hope for Owen that he will be able to have a happy, fulfilling life. It also made us see many of the challenges that lie ahead for our family. Both of the families that we met have handled the SMA really well and are amazing parents. We hope to do as good a job as they have done. We plan to keep in touch with both families and know that we have a lot left to learn. Both families have offered to have us over and see the modifications they have made to their homes and help us with any questions we may have. We look forward to getting closer with our new friends from the SMA community. We will also see them again in May at the SMA walk in Hingham.

The conference was great and we attended a few different workshops. They included topics such as: home modifications, equipment, grief management and making difficult decisions, SMA research, and also an equipment showcase. It was a great day and we hope to attend again next year!

Thank you Sue

2009-03-12T17:49:00.000-07:00

Sue is Owen 's physical therapist from the Kennedy-Donovan Center. She comes every week on Thursday mornings and works with Owen. He loves her even though she usually tires him out by the end of the session. I owe her a big thank you today for all her hard work. She came over to do Owen's therapy and somehow we ended up working on adjusting his new Kid Kart for over and hour and a half. It was the biggest pain in the rear and I am thankful that she knew what to do because it was complicated to say the least. The woman can handle an Allen key like a pro! So thanks a bunch Sue- to bad you don't get paid more for the really hard stuff! And by the way I really do love the smell of that new Downy you have been using!

Other MA families with SMA

2009-03-12T16:57:00.000-07:00

I just wanted to let you know how excited we are to have been contacted by a number of families with kids that have SMA. We have been contacted by 3 families in Massachusetts, one with a daughter with Type 3 SMA, and two other families that both have sons with Type 2 SMA. They all found out about our story through our blog and contacted us. We have been corresponding back and forth through email with questions and getting to know each other. We have received pictures of the two little boys and I can not tell you how adorable they both are. Brenden is 2 1/2 and Owen is 6 years old.

I am so unbelievable thankful to have met these amazing families( well we haven't met in real life yet, but I already feel like I know them so well!) They have provided me with many answers to the millions of questions that I have about wheelchairs, eating, respiratory issues, vans, equipment, doctors etc. It is one thing to read about SMA and another thing to hear how it affects real kids everyday, and how their parents and siblings deal with it.

Their information has made me hopeful because they seem to be handling things well and their kids are just awesome and thriving. On the other hand, it has made me sort of really aware of just how different our lives are from families with healthy kids. To hear how their other kids handle the sibling with SMA, and how they cope with insurance trouble and fighting and appealing for items, and how they have had to research every piece of equipment that they need to get, and buying a wheelchair van, and getting ramps for their houses, and how they work and try to keep a marriage strong while dealing with the SMA hanging over your head all the time. It seems like quite a burden to bear, and I am a bit fearful of having to go through all these things myself. As far as I can tell, the families we have been getting to know seem to find a way to get through it, and I am very inspired by all they have accomplished and how great their kids have turned out. I hope that we can learn a lot from them. Thank you so much to the Farrell, Norton, and White Families for being a huge help to our newly diagnosed family. We look forward to meeting you on Saturday at Boston SMA day, and we hope to continue our friendship after that.

P.S. Mary, thanks for the phone call today! I loved chatting with you ( for over an hour and a half!!) You were so great and I really enjoyed hearing from you ! I hope that our boys might be able to be friends in the future. It seems like Colin and Adyn would have a ball together- maybe with Colin's waterguns!!

Big Thanks

2009-03-10T18:00:00.000-07:00

Andy and I are just extremely overwhelmed with all the support and generous donations we have received lately. It feels like each time we pick up the phone someone is calling to let us know that they have a check or have sold t shirts or have collected something for Owen. It is so meaningful to our family to have such amazing extended family and friends who feel like they want to help our baby.

We would like to specifically acknowledge a few groups who have made very generous donations to the Fight4Owen Fund. The Massachusetts State Police D-Troop gave us almost $600.00. That collection was put together under our good friend and Andy's best man Trooper Mike Turgeon. Who by the way, gave one of THE greatest best man speeches ever. We still get people that bring up how funny he was! I wish I had a video of it to post. I crack up just thinking about it!

Also we would love to mention the Dartmouth Police Athletic Association and Chief Mark Pacheco who donated almost $700.00 to Owen's fund. The law enforcement community has truly come together to support us and we are forever thankful for every one's generosity. I wish I could express exactly how much this means to us during this difficult time, but the words escape me and I am not sure how to truly explain our appreciation. ( Maybe I should have majored in English, but I never thought I would be writing something that so many people would read on a consistant basis!)

Also we need to thank again, Sgt. Troy Spirlet and Det. Claudia Samson who have managed to sell more t-shirts. I can't imagine there is anyone within 30 miles that they haven't hit up for a t-shirt! We are so thankful to them for their tireless efforts to help us, and we are also grateful to the tons of people who have bought the t-shirts.

I know I have mentioned before what the Fight4Owen Fund will be used for but I think it bears repeating due to the volume of donations that have been coming in. We will use the fund for any equipment, therapies, medications, hospital bills or nursing visits not covered by our two health insurance policies. We also know that in the future we will definitely need to purchase some sort of wheelchair accessible vehicle. Also, in the next few years when Owen is in a power wheelchair full time, we will either have to seriously modify our existing house, or buy a new one level house with a ramp or lift for his chair. Also we would like to make a donation in Owen's name to FSMA or families of SMA, which has been an amazing resource to us during our learning about and managing his disease. SMA has no cure and a donation to FSMA will fund helping other families and hopefully find a cure so that no more children will receive the devastating news that we received just under 3 months ago.

We would love to acknowledge every single person that has even donated $1.00 to Owen but as you can see from my other postings, taking care of Owen and Adyn, and handling all of Owen's special needs is practically a full time job. We don't want to get into the habit of thanking each person individually and if Owen gets worse, not be able to keep up with thanking each specific person. Please know that we appreciate every penny that has been given to our family, and we promise to use it in the most effective ways we can to better Owen's life. We are thankful and blessed!

One last quick note, I just wanted to offer a quick word of encouragement to my awesome husband. For those of you that don't know, he is a busy man! He has a lot of work responsibilities, is on call every other week, helps out with every single thing related to Owen's care AND is back in college taking a few classes every semester to try and finish his Bachelor's degree. I know that you have a lot on your plate but you always manage to get it all done and still be here for your family! I am so proud to be married to such an amazing, dedicated man and I can't imagine sharing this roller coaster ride with anyone but you. I know I am not the easiest person to be married to but for some reason you love me unconditionally and I am so blessed to have you as my partner! xo

B4SMA

2009-03-07T11:02:00.000-08:00

We received an awesome gift when we returned from the hospital. MJ Purk is a 21 year old with Type 1 SMA. She is a strong Type 1. She and her caregiver Brenda started Blankets 4 SMA a few years ago. They send handmade blankets and quilts to children with SMA. They sent Owen his very own blanket with a beanie baby also. It is absolutely adorable and Owen already loves it!! It was so nice to receive this from someone in the SMA community. It is a wonderful organization and we are so thankful for their generosity. Check out his fleece blanket with adorable pictures of police and fire heroes!

Owen's new equipment

2009-03-07T10:54:00.000-08:00

During our stay at Children's, Owen's RT Lauren had some great news for us. Their was a family from MA that no longer needed their Kid Kart. They donated it and were hoping to find a family that could use it. It is in amazing condition and is navy blue!! That was exciting because all I could think of was that it was going to be hot pink flowers or something. We can use it until ours gets approved by insurance and comes in. ( that could be 3-4 months from now) It is worth at least a few thousand dollars. What an amazing gift to our family.

Owen loves it so far. We can't believe what a help this will be to Owen's quality of life. It needs a few adjustments but is otherwise perfect for him. We had the help of our good friends Hank Turgeon and Jimmy Estrella to get it home. They were in Boston for work and called to see if we needed anything. They generously drove over and took it home for us. That was a huge help because it is big and heavy! Thanks so much guys!

WARNING : some graphic pics

2009-03-07T10:40:00.000-08:00

So as you all know, Owen got his surgery for his feeding tube on Wednesday. Everything went well and Owen did better than expected. He was a trooper! He is still a little sore at the site but otherwise recovering well. We fed Owen last night for the first time on our own and we had no problems whatsoever. Owen is fed from 10pm - 6am every night through the tube. He will continue to eat what he can by mouth during the day.

Owen will have this long tube for a few weeks. Then it will be shortened a bit at his next visit. After 6 months when the site has fully healed they will replace the PEG tube with a Mic-Key button which is much more discreet. The nice thing about the tube is that whenever he needs medication we can give it to him right through the tube and not have to fight with him to take it.

We know that Owen needs this tube because he really has to gain some weight. He has such trouble eating enough and has a tough time eating textures that this will hopefully improve his nutrition and strength. We seem to have the hang of it, it really isn't that difficult to use. I am sure after a few weeks we will be pros!

Owen's Hospital Stay

2009-03-07T10:34:00.000-08:00

Owen had an excellent experience at Children's Hospital. The nurses were awesome!! We absolutely loved them all. They were all gorgeous and young...it was like being on Grey's Anatomy! ( I don't think Andy minded either!!) We were on the 11th floor in the MICU. It is a small unit and we had either a nurse to ourselves or shared the nurse with the person next door. It was great because they could pay lots of attention to Owen. All the nurses loved Owen and were always peeking in on him. Here are a few pictures Of Owen during his stay. Sorry they are a touch grainy. They are from Andy's phone.

Owen's Surgery

2009-03-04T14:58:00.000-08:00

Andy and I are happy to report that Owen did very well getting his g-tube. He is recovering in the ICU and doing great. The surgery went off without any complications, and he was able to have the breathing tube removed. Owen is breathing on his own and has been pretty strong respiratory wise.

He definitely is in some pain but has received pain medication regularly. He is extremely hungry and will not be able to have anything for the next 24 hours. They want to give his stomach a break and form a nice seal around the tube site. His heart rate was a little high before but they think he was dehydrated and increased his iv fluids. We have a nice room in the ICU and have had great care thus far. More updates on his condition tomorrow...thank you all for the well wishes and prayers!

Pre-Op

2009-03-03T17:50:00.000-08:00

I will try to be brief because it has been a looonng day and we have an even longer one tomorrow. We went up to Children's bright and early this morning. There was a ton of traffic so we were 15 minutes late...nothing bothers me more than being late...needless to say I was already stressed and it wasn't even 9am. We got to the pre-op clinic and were seen by a nurse who checked Owen's vitals and got a detailed family history on things that might affects Owen's anesthesia.

We were then seen by a anesthesiologist( not Owen's for the surgery). He discussed with us all the surgery info and details about how they will put Owen out. One of us will be able to hold him while he is getting the gas and drugs. That should be interesting. We discussed all our questions that we had and pain management info. They told us that we would have to be there at 7am. Owen can't have anything including milk after 12, and juice until 2 hours before the surgery.

They ended up changing his surgery time to 12:30. We will have to be in Boston by 11am. So now I am a little worried that Owen is going to be a terror because he will be hungry. I guess we will see what tomorrow brings. They changed his surgery because they decided that they wanted him to recover in the ICU instead of a regular recovery floor. The beds were full in the ICU until the afternoon, causing the time change.

They are definitely using a breathing tube during surgery. They will also be scoping his esophagus and stomach to check things out and then put in the tube. I am a little nervous about how Owen's breathing will be after they take out the tube, but again we will have to just see how he does.

I need to go finish packing for our stay and I will definitely update the blog sometime tomorrow with more details. Please keep us in your thoughts and prayers. Owen is one brave little boy and we have faith that he will be strong and handle this OK. We love him so unbelievably much, and pray he will be fine. Check back tomorrow!

Our Wonderful Families

2009-03-02T07:55:00.000-08:00

Anyone who has been following Owen's story knows we are in for a long week. Owen's surgery is Wednesday morning. We are going up Tuesday for a 2 1/2 hour pre-op and then I will be staying until Saturday with Owen. Andy will be back and forth for the week.

We just wanted to say a quick thank you to our amazing families who are helping us so much this week. Both our parents are taking time off of work to have Adyn sleep over and keep him busy while we are gone. And my sister Jessica and her awesome husband Uncle Mike are taking on the huge responsibility of taking our crazy dog to their house. They already have two Jack Russells named Duke and Daisy. Best of luck guys!! You certainly will need it!!

Our families adore our children so much and have been unbelievably supportive throughout this whole ordeal. Andy and I have always been very close to our families, but we are closer now than I could have ever imagined. Difficult circumstances either bring people together, or push them apart. Owen's struggles have definitely pulled us even closer than before. We are truly blessed with such generous and selfless families. We know this is going to be a crazy week and we appreciate all your help!

Surgery and Fundraiser Update

2009-02-28T10:56:00.000-08:00

A some of you are aware, Owen is scheduled for his feeding tube surgery this week at Children's Hospital in Boston. We will be at the Hospital for his Pre-Op on Tuesday and Wednesday he will have the actual procedure. They anticipate a several day recovery and then at least a full day of monitoring his feeding through the tube. We will be in Boston for the entire week but Heather will be posting from the hospital and we will update everyone who wants to keep tabs on his progress.

Owen's pulmonologist seems to think that he should handle it well because his lungs seem really clear at this point and his oxygen levels were at 100%. Please keep Owen in your thoughts this week.

On a lighter note, we have scheduled the fundraiser for Thursday May 7th at Cafe Funchal in New Bedford, we hope to have tickets available soon. We already have a band and several people who have donated their time and some raffle prizes to make this a success. We are still looking for people to help volunteer and donate raffle prizes. If anyone is willing to donate their time or able to solicit a raffle prize it would be appreciated, and you can contact us with an e-mail.

Twenty percent of our ticket sales are going to be donated to FSMA ( Families of Spinal Muscular Atrophy ) so donations would not only help Owen in obtaining some of his medical equipment and care but would also go towards research and education in the hopes of finding a cure for SMA in the future. We are open to any ideas that you would feel would make the fundraiser a success.

Thanks to Hank and Mike Turgeon, James Estrella, Gary Sarmento, Shane Taber, Troy Spirlet and the Cafe Funchal Family for making this fundraiser a possibility !!

As promised

2009-02-24T11:53:00.000-08:00

(This is a picture of Owen when we are using the cough assist machine. I tried to move it with the picture of the actual machine, but since I am not the most technical you are lucky I could even upload the pics never mind move them around. Sorry, the other pic is at the bottom of the post. Thanks for your understanding!)

Well first of all I would like to say happy 1st birthday to our boxer Diesel. Anyone that knows me knows that I am not a huge animal fan...i like them but I never really had a desire to live with one. And after Andy brought a bunny home a few Easter's ago I was always nervous what he might show up with next! Even though Diesel does drive me crazy sometimes with his endless amount of energy, I really have fallen in love with him. I can't imagine our family without him. So happy birthday big guy!

This is a picture of Owen in his new brace. It helps provide support to his core muscles and give him extra strength. It allows him to have more energy to hold up his head without having to hold up his whole body at once. We think it might need to be trimmed still a bit around his legs but we can take care of that next week. He will need a whole on the left side put in for his feeding tube. Also we might have to put room for his stomach to expand when he breathes. Equipment sometimes does this. It helps his physical strength but is so tight on his belly that it could constrict his breathing. Isn't he the cutest?

This is just a picture of his brace. It is so little! He is still such a peanut, only 16 pounds. After his tube we hope he will put on some weight!

This is a picture of his suction machine. It has different attachments for the end piece. Right now we use a wand type of ending that we insert into his mouth to suction out all the junk that the cough machine brings up. It is loud and Owen hates it. He tries to keep his mouth shut so we can't get in. It is good for him so we have to make it work. It has a travel bag so if Owen gets worse and we have to go somewhere we can take it with us to remove any mucous.

This is the dreaded cough assist machine. I have explained it in previous posts, but it pushes air into his lungs and then sucks it out to produce a cough and loosen secretions in his lungs. The SMA makes him to weak to cough productively on his own.

Just So Sad

2009-02-24T10:51:00.000-08:00

I am on a forum for mothers. There are many different boards and their is also a special needs one that I frequent the most. Not long ago, in January, one of the mothers on the multiples board found out that her beautiful twin baby girls had Type 1 SMA. They were only about 5 months old when diagnosed. It is with a heavy heart that I tell you that both of the girls have gone to heaven. Sydney and Carynne passed within a day of each other. I can not even imagine what their parents Brook and Jake are dealing with. Please keep their family and the girls in your prayers. This is a reminder to our family that no matter how difficult things get for us and Owen that their is always someone dealing with more than we are. Hug your own babies and family tight and remember to tell them you love them.

P.S.

2009-02-23T07:08:00.000-08:00

One quick note, I got so caught up in the last post I forgot one important thing. Owen is feeling much,much better. He has recovered from the ear infection just fine, and his coughing has improved for the moment. He is back to his happy, goofy, self!

Updates

2009-02-23T05:18:00.000-08:00

So it has been a little busy around the Simmons household the past few days! Owen began Friday morning with his PT Sue visiting. We tried his brace on him and even though it might need a little trimming he did really well in it. ( i know I have said this before, but I will try to post some pics of all the stuff I am talking about later on! ) The brace gives him some support in his trunk area so he can have more of his strength to hold his head up. It doesn't allow him to sit on his own, we still have to hold him when he is wearing it but it does give great support for him.

Sue was finishing up and we saw Dr. Graham and Lauren pull up. They are his pulmonologist and the respiratory therapist from Children's. They made a house call to see Owen in his environment and to see all his new equipment set up where we actually have to use it. It was so nice to avoid another trip to Boston! So, they came in and we talked for a while, then we headed upstairs to check out the equipment. We showed them our routine with the Cough Machine and the suction. They were impressed with how well we seem to have it down and think we are doing a great job! Yeah for Mom and Dad!

We also discussed a lot about Owen and his diagnosis. SMA has three types. We always assumed that Owen was type 2 due to the timing of his diagnosis. ( for more info explaining the types check out fight4owen.com under sma info) We talked with the doctor and had some questions about this. They had mentioned to us that Owen was very early for type 2 to be getting the g-tube and all the res. equipment that he is needing. Also Owen is nowhere near being an independent sitter and type 2 kids usually can sit on their own. But, Owen is definitely not as severe as most type 1 kids. So they explained to us that they would label him either a weak type 2 or a strong type 1. We both think that he fits the weak 2 the best. Type 1 is such a horrible diagnosis and we just don't see him being that severe, also he would have had more trouble really early on in life than he did.

Not that it really changes anything for Owen being labelled weak 2. It was a little hard for us to hear even though we had suspected that he really was somewhere in between type 1 and 2. Type 1 has a very early life expectancy and type 2 has a much longer expectancy. So this brought up a lot of questions for us that the doctor's really can not answer. They do not have the magic ball to give us all the answers. So we just have to wait and see how healthy Owen can stay and just deal with any problems he may run into as we go. We discussed how far we would be willing to take things for Owen. And while we can certainly change our minds at any point, we want Owen to have a good quality of life. And to Andy and I, that does not include living in a hospital bed hooked up to tons of machines without an ability to recover, but, that is not anything that we have to deal with right this second. We are focusing on his health right now and getting through his surgery next week.

Dr. Graham is really such a great guy. I told him, tearfully, that I am so thankful that we haven't had to fight for getting Owen the care that we think he needs. They have been on board with everything and we have truly agreed on every medical decision thus far. That is such an amazing feeling for us to really feel like Owen is in wonderful hands. Dr. Graham has already talked to the anesthesiologist that is doing Owen's surgery. He thinks he is one of the best for Owen. They have already discussed the possibility of using a breathing tube and would like to avoid it is they can. Also they discussed pain medication that he might need. The pain pills can depress some one's respiratory system so that is a concern for Owen, but also if he is in pain that will make him not breathe fully which is just as bad. So they will keep a close eye on his and try to give him enough so that he isn't in pain, but not enough to upset anything. They told us he will be under for only about an hour. It is a fairly quick surgery and that main concern will be his breathing. The actual surgery is pretty routine and doesn't seem to be a big deal. We will know more next Tuesday when we go to his pre-op appointment.

Thanks if you have made it this far!! It is a lot to get down but I know that many are interested in his progress. Overall it was a productive visit and we were thankful for it. While we were concerned with Owen's weak 2 diagnosis, there really isn't anything we can to about it. There is NO cure for SMA right now and doesn't appear to be one on the horizon. We can only help Owen to stay healthy and help be proactive in trying to avoid trouble in the future. We will do everything we can to give Owen a happy and healthy life.

He is truly an amazing child who fills our life with laughter and so much joy. It has been very hard for us to watch such a vibrant little boy have to deal with one thing after another. He is so smart and we know that very soon he will realize just how different he is from other children. Andy was wrestling with Adyn last night on our bed, and it hit me that we will never be able to do that with Owen. When we found out we were having another boy, I kept thinking about how they would grow up together and play football in the yard and be crazy brothers! Sometimes we are so caught up in his health care that we forget how different life will truly be for him, and all of us too. Adyn will never run around chasing his brother and all the things that brothers do. It is truly a change in perspective for us, for what we imagined our family to be. Our normal now is drastically different than a year ago. This disease is really changing our whole families life and we will have to think of it for every single decision we make in the future. It will dictate how we live for the rest of Owen's life. Where we go, what we can and cannot do, even where we can live. We have been given this challenge and we are determined to handle it. We appreciate all your support thus far. Keep praying for our family.

Another Day at Children's Hospital

2009-02-19T20:23:00.000-08:00

I know I have previously posted that Heather will be handling all of the postings, but today has been a long day and she deserved a break. So we made another trek to Children's Hospital in Boston today. The purpose of this trip was to have Owen fitted for his upper body support brace. Last week Owen spent approximately twenty minutes getting measured all over his upper body in preparation for his newest brace. This brace is designed to provide core and upper body support for Owen who is unable to hold his upper body in an upright position without assistance. The brace does not allow him to sit or hold his body in an upright position unassisted, he still needs our help for that. What it does do is force his torso into a natural position to help align his spine and try and limit spinal issues such as scoliosis which are so prevalent in children with SMA. At first Owen was a little irritated by the brace which goes from his hips to his upper chest, but after some trimming and a few more test fits he seemed to at least tolerate it. Owen has been a little warrior so far and has pretty much had a smile on his face during all of his tests, x-rays, fittings and examinations.

Tomorrow will be an important day for us as Owen's Pulmonologist and assistant will be travelling from Children's Hospital for a home visit. I am not sure if this is common practice at Children's hospital, but it was refreshing to hear and we were excited that were were not making an additional trip into Boston. This visit will be to give us some further guidance into the usage of the Cough Assist and suction machines and also provide some insight to what we can expect with Owen's respiratory health in the future. The Dr's are a little concerned about the early onset of some respiratory issues and the onset of how early he needed a feeding tube, which may place Owen more in the middle of the Type I and Type II diagnosis which would make a huge difference in Owen's prolonged health and the care that we will have to provide him. Hopefully tomorrow we will have some answers, however we know that only time will tell.

On a lighter note we are extremely excited to say that as a result of the New Bedford Police department T-Shirt fundraiser and a generous donation from members of the Bristol County District Attorney's Office we were able to expand the Fight 4 Owen Fund to over $3000.00. Our family would like to again thank everyone who made a donation and purchased a T-Shirt. I would like to take a moment to especially thank Trooper Anne Marie Robertson for spreading the word and collecting donations and Lt. Steven O'Reilly for soliciting donations on behalf of Owen.... and a very special thanks to Sgt. Troy Spirlet and Det. Claudia Sampson, you guys really have no idea how much you have done for Owen and our family. We are forever grateful !!

I would also like to add that the website and blog have received over 1200 visitors and over 3000 views. This would not have been possible without the help from people such as yourself. Please continue to spread the word about our site and SMA !!

The New Addition to our family.....

2009-02-15T05:10:00.000-08:00

We would like to introduce you to the new addition to our family.....the Dreaded Cough Assist Machine. We are not so thrilled about this addition! So they came on Friday with 5 huge boxes of equipment for us. We got the machine, the suction machine and all the corresponding tubes, parts, and catheters to suction Owen. We were overwhelmed to say the least. After he explained everything it actually is pretty easy, it is just going to take some getting used to for us. Owen absolutely HATES it all. The poor kid. He knows what is happening and just cries and cries when he sees us getting everything ready

I have explained what the machine does in previous posts so I won't explain it all again. To use it on Owen, we will place a mask over his nose and mouth and create a seal. We turn on the machine and we do 4 sets of 4 breathes. Each breath is an inhale and exhale. By the time the 4 breathes are over Owen is freaking out. And we still have 3 more sets to go. It definitely is not a pleasant thing at all. We feel like we are torturing him , but we know it is necessary.

After each set of breathes depending on how much it brought up we use a suction machine that has different tips to get all the junk out. We can either suction in his mouth and throat or through his nose with a catheter. So far we haven't done the nose yet. They will show us this Friday when his doctor comes to the house. We really are nervous about sticking it down his nose but if it has to be done we will figure it out. So the suction machine Owen hates as you can imagine. But it really has been a great piece of equipment. The two machines together are amazing and they seem to be helping him handle getting the secretions out so he is more comfortable. I will try to post pics later today when Andy gets home from work. That way you can get a better understanding of what I am talking about.

We are still waiting to hear about our supplemental insurance and it could take another 90 days. These things are such a pain. I have filled out a million forms and called a few times. We can't get his equipment till we get the other insurance because the second insurance will help cover so much more than just the first. So we are just waiting. This stuff takes time, and while it is frustrating for us we know that their are many other families going through the same stuff we are. Also it is frustrating because we feel like Owen has it more difficult since his parents are married and both work. Owen medically qualifies for SSI but since we are married and work, we are over the income limit so he is disqualified. Can you imagine?? If he isn't the ideal candidate for disability I don't know who is. It is almost $700 a month that he won't be able to get. That money could be helping us pay for double health insurance and all the other costs of traveling back and forth to the doctors, and co -pays, and equipment costs, and future wheelchair vehicles etc. So it is certainly difficult to see Owen at a disadvantage with the system. And when you see other families with all different kids from all different dads that aren't around, and they collect SSI for all of their kids it is frustrating. If we weren't married and we didn't work Owen would get everything under the sun for free. That is the saddest part. Not trying to sound bitter, just annoyed with the whole system. I guess that is the way things are so we just need to accept them. I will post the pics this afternoon. Thanks for listening to my rant...just trying to get things off my chest. Sometimes it just feels like we have been thrown one awful thing after the other...over and over and over. Thanks for being supportive, we appreciate it.

AMAZING!!

2009-02-13T10:33:00.000-08:00

I just returned with Owen from a visit to Dartmouth Middle School. Two of the 7th grade classes read our blog and decided that they wanted to help Owen. Lisa Turgeon, whose husband Mike was Andy's best man called me this afternoon. She had sent out a memo to her colleagues at DMS letting them know about Owen. Mrs. Terciera and Mrs. O'Malley- Tavares are 7th grade teachers at the school. Their students heard about Owen through the website and decided that they could help us.

The kids were awesome and made posters with Owen's pictures and Fight 4 Owen on them. They worked very hard and collected money. They brought in lunch money, allowance money and also asked their parents. They collected almost two hundred dollars!!!! Imagine how surprised I was when they handed me a beautiful card and all that money for the Fight 4 Owen Fund. They are such wonderful kids. They listened to me and watched Owen when I explained about SMA and all the hardships Owen is going through. They were quiet and so interested in what I had to say. I can not express how thankful we are for their generosity and selflessness. To see so many children their age worrying and caring for someone that they have never met took my breathe away! We are so thankful to the kids and to their amazing teachers who are obviously doing a great job. Thank you from the bottom of our hearts. Blessings often come from unexpected places and we are forever grateful to you for this kind donation! To all the kids from Mrs. Terciera and Mrs. O'Malley- Tavares classes, you should be so so proud of yourselves! We certainly are!!!

New equipment

2009-02-12T17:09:00.000-08:00

Tomorrow they will be delivering Owen's next piece of equipment. He will be getting the Cough Assist machine. A Respiratory therapist is going to drop it off and teach us how exactly to use it. We tried a few times last week when we were in Boston but this will be the first time that we have to do it on our own. Definitely nerve wracking! They will also be delivering all his suction equipment that we will have to use to clear secretions from his mouth and nose. Owen has a lot of trouble getting that sort of thing out and will need our help. He is just not strong enough to clear it himself like a regular person. We are hoping that this equipment will make Owen more comfortable and also help us avoid anything major in the future. More updates on the machine and how it is going tomorrow.

Also, Owen's RT and pulmonologist from Boston will be driving here next Friday to do a home visit. They will be coming to really help us understand all this equipment and exactly what the future hold for Owen and any assistance we might need to make decisions in the future. A lot of how well Owen will be able to handle the SMA will be determined by his respiratory strength. He has been doing relatively well, but things have been a little tougher for him lately. The two ear infections haven't helped either. We are just holding our breathe and hoping that the machine might help him out a bit. We know that his physical problems will always be present and difficult but as long as he is fairly healthy breathing wise he will be able to have a much more normal life. It is truly a waiting game, and we are just praying that he can stay strong. Please keep our baby in your prayers.

Another ear infection

2009-02-11T10:06:00.000-08:00

Owen was up most of the night with a fever and just miserable. He had a horrible cough and I of course was freaking out and thinking the worst. It is very difficult because what might be just a little cold for a regular kid can be a disaster for a child with SMA. We went to Owen's pediatrician Dr. Simmons. ( no relation) I can not say enough about her. Both of our boys adore her and she has been amazing advocating for Owen through this whole ordeal.

Owen had a fever and looks like his left ear is infected again...second time in the past few weeks. So she put him on a stronger antibiotic and we will try to clear this thing up. The good new is that even though he sounded like crap his lungs were clear. That is a good sign. Once we get the cough machine in the next few weeks that should help loosen up all the junk in his chest. Hope to see an improvement with Owen once that therapy begins.

A few things...

2009-02-09T18:59:00.000-08:00

Owen had his first occupational therapy appointment on Saturday. This was our first time meeting Sarah. We hit it off right away and Owen had no trouble adjusting to a new person. She is a sweetie and I look forward to working with her. Her priorities right now are to help Owen with his eating issues. Owen right now can not really tolerate any food with texture to it. He kind of gags if you give him anything lumpy. Also he doesn't really chew much. This has been very difficult for us as far as what to feed him. It was fine when he would eat pureed baby food, but he refuses to eat that now because he has more mature taste buds and wants real people food. So he eats puddings, yogurt, ice cream, and pureed fruit and veggies that are flavorful. We also add butter and heavy cream to almost everything. He need all the extra calories to bulk him up. Pretty much take every rule you have heard of for being on a diet and do the exact opposite. Add fat to everything!! We even add heavy cream to his bottle of milk. He loves it!!

Sarah thinks his mouth, face, and tongue muscles are extremely sensitive like the rest of his body. So when the chunky food goes in he immediately rejects it. We spent most of his visit trying different techniques to feed him and I have to say I was really surprised at how well a few subtle changes made quite a difference. Just a few different ways to offer food really made him move his mouth and tongue more efficiently. It was pretty cool.

Owen's surgery for his g-tube is set for Wednesday March 4th. We will go up on the 3rd for Owen's pre-op and then have to return the next day for the procedure. They have booked Owen for 3 nights and I will be able to stay with him all three nights. The surgery itself as the doctors have explained it is fairly simple. The risks for Owen are from the anesthesia and how his lungs will handle the stress of being under. We have faith in the amazing doctors at Children's that our baby will be just fine. It will take some time getting used to feeding his through the tube , but most people we have spoken to are so happy that they did it. It seems to make things less stressful for both the child and the parents. Owen will eat whatever he feels up to and then we can supplement the rest through the tube. Since Owen is so small it really was a necessary step for us to ensure that he is as healthy and strong as possible!

One last thing, I just wanted to let everyone know how appreciative we are of all the offers of help we have received. It is amazing the support we have gotten from such unexpected place. Old friends, friends of friends, co-workers and plain old strangers have contacted us and wished us well. It is amazing to know that so many are on our side. It certainly makes things a little bit better. This has been the hardest time in our families life and it is tough knowing that their in no end in sight. Owen will have this disease forever unless they find a cure. We know that our road will be long and filled with many ups and downs, but we are confident that we will make it through a closer and stronger family. Both of our children are exceptional boys and we have been truly blessed. Owen has two parents who will fight for him every step of the way to give him the most fulfilling, healthy and happy life possible. We never imagined that we would have to experience a nightmare like SMA, but we are determined to succeed. Without sounding like a broken record, there are no words to express our thanks to you all...and we will keep on fighting for our baby.

Yet another Doctors Appointment

2009-02-05T17:53:00.000-08:00

First of all I would just like to say that I was extremely shocked to see the last post that Andy surprised me with. Anyone that know my husband knows that he is far from emotional and it was surprising for me to read what he wrote. I on the other hand am much more emotional.(opposites attract I guess) Andy knows that I adore him and could never have made it through this without him. He is more help that I ever imagined, and even with his crazy work commitments still finds time to go to all of Owen's appointments and be by my side through all the additional things needed for Owen's care. We make a good team and I am glad to have him as my partner.

Enough of the mushy stuff...it isn't even Valentine's Day yet!! So we had a long day today. Almost three hours of doctor's appointments and then the ride there and back. Owen went to the SMA clinic at Children's. It is so amazing. We are so blessed to have such a great team of doctors. The team approach of the SMA clinic makes things so much easier on us and Owen. In the three hours there we met with his nutritionist, his pulmonary doctor and respiratory therapist, his neurologist and orthopedic doctor and his physical therapist all in the same room one after the other. Crazy huh? Even crazier was the fact that Owen was awesome through the whole thing. Smiled the whole time and was making everyone laugh. He is the best kid.

So a few new updates on Owen's condition. His pulmonary doctor thinks it is time for us to get the Cough Assist machine. We knew this was in the future and we thought we were prepared for it but the whole thing makes me nervous. I am sure with a little practice I will be a pro. The Cough Assist machine consists of a mask over Owen's nose and mouth. It is attached to a long hose that connects to the machine. The machine will basically do what a cough does for a normal person. This works by blowing forceful air into his lungs and then sucking it right back out. In turn it will loosen any secretions he may have so that they don't settle into his lungs. It is not pleasant and Owen wasn't to thrilled to say the least. We will do it in the morning and at night for now. If he gets sick we will have to use it much more. It is a little scary because it has all sorts of different knobs and pressures you have to adjust correctly. Also, Andy and I will be responsible for doing this to him daily. When the machine comes in in a few weeks the doctor and RT will make sure we are totally comfortable with everything. Wish us luck!

The second thing we decided on is for Owen to get a brace for his trunk that will help him sit up. Owen can not sit up on his own at all and this makes things difficult for him. He has very weak core muscles and the brace will give him support and stability. Can't wait, I think this will help Owen improve greatly. He was measured all over, up and down, and around. The brace should be here in two weeks. Back to Boston we will go.

They discussed to us some options if we wanted to have another child. We both shook our heads NO at the same time! We have our hands full and would never want to take the chance of having another child with SMA, since it is a genetic disorder and there is a 25% chance with each pregnancy. Some people do want other children and there are options of IVF with testing available but we are both definitely not interested. We are thankful for the blessings we have.

So those are the updates. Thanks to everyone who is following his story. We appreciate all the support. We will let you know if anything new comes up!

Fight 4 Owen Fund

2009-02-04T19:48:00.000-08:00

Heather has been doing all of the postings and has handled the website development thus far, and based on the amazing job she has done with it so far she is going to remain firmly in that position. This blog and website would not have been possible without her dedication, commitment and the love she has for our family. I owe a lot more to her than the thanks for handling this and for that I am very grateful. I love you very much Heather !

I just wanted to post that of this writing the New Bedford Police T-Shirt Fund has raised over $1000. (...thanks again Troy and Claudia !! I love you guys too, just in a less intimate way than my wife...)

With this money we have started the FIGHT 4 OWEN FUND at the New Bedford Credit Union. This Fund will allow us to document and record all of the donations made for Owen. The fund will be used to pay for Owens equipment, a portion of his supplemental insurance as well as other daily items such as the $12.00 parking fee at Children's Hospital which we incur at a rate of about four times per month.

This fund will also allow anyone who wishes to donate, the ability to go to the New Bedford Credit Union and deposit money directly into the fund as a charitable donation. This was a response to the numerous requests we received from people who wanted to make small donations or wanted to do something other than purchase a T-shirt.

I am also in the process of attaching a PayPal account to the website so that others will have access to purchase T-Shirts directly on line..... keep checking the website and blog as this feature should be added shortly.

Although Owen is not able to express his gratitude for everything that is being done on his behalf I can say that Heather, Adyn and I cannot express our gratitude enough !!! Not only for what has been done but for the things that people have continued to say that want to do in the future. I can say that Heather and I were blessed with Owen...... but Owen was truly blessed to have everyone that checks this blog and website ....

Andy

A New Therapy

2009-02-03T05:22:00.000-08:00

Owen's other therapist came for her weekly visit yesterday. Kathy is also from the KDC, Owen really likes her ( and so do I!!) She is amazing with Owen and she also has been such a support for me and helps me figure out all the insurance and paperwork garbage that is never ending. So I had mentioned to her last week that I wanted to get Owen in to some type of water therapy. I have read that SMA kids really enjoy it and it gives their limbs a easier chance to move. So of course Kathy didn't disappoint. She showed up with info about the New England Aqua Stars. It is a a aquatic therapy in Dartmouth. I am so excited for this. We have to obtain a prescription when we go to Boston on Thursday. They get approved and then we are good to go!

On another note, Owen is starting occupational therapy on Saturday morning with Sarah. She is also from the KDC, and I have never met her but have heard great things about her from Kathy and Sue. She will work with Owen on some eating issues that he has and also fine motor skills that he will definitely need in the future. She will also be able to help us with adaptive switch toys for Owen. I will update the blog with how it went on Saturday.

And one final thing, we received a package from Children's Hospital in Boston, where all of Owen's specialists are. They have started a SMA clinic and that is where we will be going on Thursday. It is a great team approach where at the appointment, several of his doctors and therapists are all there at the same time. That way we can sort of multi task and not have to be going up there anymore than we already do. ( which is A LOT! )

They sent us an invite to The Boston SMA Day which is a conference about SMA research, financial, health and family issues. It is at Harvard Medical and we can't wait to go with Owen. Hopefully we will meet some other families dealing with this and see how they handle it. Also to get a better picture of some older children with Type 2 and exactly how limited they are physically and how the disease has affected them.

HOORAY!!

2009-02-01T15:51:00.000-08:00

I am pleased to announce the Owen's website is finally up and running. The website is http://www.fight4owen.com/ . We are so excited that it is done. We owe a Huge thank you to Greg Demers. Greg is a good friend of Andy's. He is an amazing guy and has worked sooo hard on making the website exactly what we wanted. He just got married a few months ago and we appreciate the time he took away from his awesome kids and lovely new wife. XOXO

The website has a lot more info than the blog and also more pictures. Our goal was to educate about SMA, and to give all our friends and family a better understanding of what Owen and our family are facing. We hope you enjoy it! Please feel free to send links to either the site or this blog to whoever you think might be interested. We appreciate all of your support.

On a lighter note...

2009-01-31T11:44:00.001-08:00

I have been posting a lot of heavy kind of stuff lately. I thought you might like to see a bit of our other son Adyn. Here are some pictures from his recent roller skating adventure. My sister Jessica bought him Spiderman skates with knee and elbow pads. He LOVES them of course and wants to wear them all the time and since the weather has been stinky that means in the house. It is always one of his Auntie's who thinks that these kinds of presents are a great idea! Maybe we can leave them at your house Jess! Enjoy!

A BIG Thank You!!!

2009-01-30T10:36:00.000-08:00

Andy and I would like to take this opportunity to give a big thank you to the entire New Bedford Police Department. Especially, to Det. Claudia Samson and Sgt. Troy Spirlet. Immediately after finding out Owen's diagnosis of Spinal Muscular Atrophy, they got to work on a t-shirt fundraiser. They printed t-shirts with the NBPD athletics logo, and added Owen's initials to the bottom. O.R.S. ( Owen Reid Simmons) They sold these shirts throughout the department and have had to reorder twice to fill the large demand for them. To date they have given us over $1000.00 for the Fight 4 Owen Fund. This has been so helpful to our family in getting Owen some of the equipment that he needs. We are so grateful to everyone for their participation. We are truly blessed by your generosity.

Since so many people have been inquiring about how to help Owen, we are planning a fundraiser in the future. We would like to do it in the early spring and we will be posting when further details are available.

PT today

2009-01-29T12:07:00.000-08:00

Owen had his second physical therapy session of the week today. His PT Sue from the Kennedy-Donovan Center is amazing. Owen absolutely loves her and she has been so great with helping me navigate through the endless process of insurance companies and everything that we need to do to get Owen what he needs.

We are in the process of applying for a secondary insurance in addition to the existing family plan that we have. The supplemental insurance is necessary for Owen due to the countless equipment items that he will need to get. Our first plan wouldn't even begin to cover how much he will need. Since SMA affects so many different parts of his body, he will require lots of different types of equipment.

Once the insurance is approved the next step is for us to start the process of getting him the supplies he needs. The first priority for us is to get him a bath assistance seat. Owen can not sit up on his own and has very poor muscle strength. We have been getting by with using Owen's infant tub to bathe him, but he has outgrown it and certainly needs something more age appropriate. Think of yourself, how would you take a bath if you couldn't hold your body upright? If we laid him down in even a few inches of water he wouldn't be able to hold his head out of the water. So we will be ordering Owen something similar to this:

http://www.adaptivemall.com/mabasesi0.html

The bath seat pretty much looks like a beach chair. It will provide Owen with the support he needs, and straps to keep his safe. It will be adjustable so we can figure out what works best for him. We can't wait to get this!

The second piece of equipment on our list is sometimes called a Kid Kart. Essentially it will be like Owen's first wheelchair. It is a stroller type device that will be similar to this:

http://www.adaptivemall.com/pahitistmlis.html

We are so anxious for Owen to get this because it will truly make his and our life much easier. Right now Owen can still just about fit into his infant seat, he watches his movies in there, occasionally naps in there and also will eat in there the majority of the time. Other than that he is either on the floor or propped up on the Boppy with a pillow underneath. He has trouble holding himself up in his highchair for very long so we don't even use it that much. This presents a problem for us because Owen really need something to support him so he can sit upright and play. The Kid Kart will provide Owen with that. He will be able to sit in it safely and comfortably and we can adjust it from all the way down to the floor so he can play with Adyn and the family. Or we can raise it all the way to a table. It will have an indoor and outdoor base. This will allow Owen to have some independence where we can take him out places while still giving him the necessary support that he truly needs. Can't wait!

After we get those two pieces the next item on the agenda will be a stander. I think that Owen will Love this! Since he can not bear any weight on his legs he is never in an upright standing position. The goal of the stander will be to get him upright and bearing weight with assistance and support for his body and legs. It will look something similar to this:

http://www.adaptivemall.com/girpronstan.html

This piece of equipment will aid greatly in his circulation and also digestion by allowing his body to be in a position most of us take for granted. It will also help with aligning his spine in the proper way.

As you can see Owen will need much assistance to do everyday things. The examples above are truly just the tip of the iceberg! That doesn't include a power wheelchair in a few years. A Cough Assist machine, suction equipment and Bi-Pap machine that will be needed if his respiratory health declines. Also, wheelchair access to our home and vehicles. These are things that we never imagined we would even have to think of but are now becoming very routine to us. We will update you whenever Owen gets some new equipment.

Update

2009-01-27T18:46:00.000-08:00

So we went to Boston on Monday to meet with Owen's nutritionist and GI doctor. He had gained a few ounces and is now 16 pounds 3 ounces. He is still so small for his age and they were getting concerned about many of his difficulties with eating. They recommended that we get Owen booked for surgery to get a g- tube. The g-tube will be a feeding tube that is in the left side of his tummy and will allow us to feed Owen directly to his stomach. We knew that it would be something we would have to deal with but neither of us were quite expecting it so soon.

Owen has many difficulties eating and the doctor felt that he has to use up so much of his energy to eat and drink all the calories that he needs to stay healthy and grow. So we all agreed that his energy would be better spent on trying to stay as strong physically as possible. Owen will still be able to eat by mouth and if he doesn't get enough at a feeding we can supplement through the g-tube. After 6 months they will switch out the g- tube with a smaller mic-key button.

We definitely feel that this will be a big help to Owen's health. We are very nervous for him to have to go through the surgery and be under anesthesia but, in the long run think this is the best decision for our baby. Owen will probably get the surgery in about 2 months so now we have time to do as much research as possible and get prepared for the surgery.

Owen's Story

2009-01-27T07:02:00.000-08:00

Owen was born on 12- 27-07. He was 8 pounds 8 ounces and was the happiest baby. We were so excited to have another healthy boy to join big brother Adyn who just turned 4. He was a very content and easy going baby. We had no trouble adjusting to a second baby at all. He just fit into the family right away!

Owen was always healthy and seemed to be thriving. Then we began to notice around 4 months or so that he wasn't hitting the physical milestones that Adyn had. Owen couldn't roll over or hold his head up very well when on his tummy. As time went on he also wasn't sitting up and overall just seemed very weak.

We mentioned this to his pediatrician and we were referred to a neurologist. We went to this first neurologist and after examining Owen he gave him a clean bill of health. We were shocked and left there feeling very confused. We called Early Intervention and started Owen with physical therapy, and continued trying to get some answers about what was wrong with our baby.

We were trying to get into a neuromuscular clinic out of Children's Hospital Boston, but initially had some trouble getting accepted. This changed when Owen began having a few episodes of muscle spasms. They wanted to see us right away and we made an appointment for a few weeks later.

Stephanie, a friend of mine who is a R.N. mentioned to me to find some info on Spinal Muscular Atrophy. We had never heard of this disease before. Once we read all the symptoms we truly thought that Owen might have it. This was very hard for us because we never imagined that Owen could possibly have such a devastating disease.

We went to Childrens and the wonderful doctors there checked Owen and did some tests on him. They agreed and thought that with Owen's symptoms he fit the profile of SMA. He had weak muscle tone, weak torso and trunk, a quivering tongue, and lacked deep tendon reflexes. They noticed he was having some hip trouble and sent us home with a brace for bed. They sent out our blood work and said we would know in 2 weeks.

On December 18 the nurse called and gave us the news that Owen indeed had SMA. We were not surprised but were devastated to hear the diagnosis. This is a horrible disease and knowing that Owen would deal with this the rest of his life was a hard blow to take. Especially a week before his first Christmas.

Since Owen has been diagnosed he continues to recieve PT twice a week and also continues to meet with a nutritionist, his neurologist, his orthopedic doctor, his GI doctor and his pulmonologist. He will begin OT shortly to help with his eating issues. Owen's disease will affect all the muscles in his body including those used to eat, breathe, and all voluntary muscles used to sit, stand, etc. He will more than likely never stand on his own without assistance and will have to use a wheelchair to get around. As of right now Owen's respiratory strength is really great and continues to be better than most kids with Type II SMA. We hope that this will continue in the future.

This disease is something our family and Owen will deal with for the rest of his life. It is a genetic disease that we had absolutely no history of in either of our families. This disease DOES NOT affect his brain or mental function. He is pretty much a normal child in a failing body. He is the sweetest, happiest kid and extremely bright. Our hope is that we can provide Owen with the most normal life possible. We will strive to give him the easiest life possible with this disease. Please treat him like a normal child and do not feel sorry for us. Owen is a blessing to our family and we are so thankful to be his parents. Our goal is to give him a fulfilling life with many happy memories. Thank you so much for your support and we appreciate every one's generosity and offers to help. We will continue to update this blog regularly with Owens progress. Lastly please keep our family and Owen in your prayers!