Declan Sitting!!

Jan 8,2013

Ok I know I am really really far behind, and I have been working on a post since thanksgiving but there never seems to be enough time... ever...

I am going to post this out of order, but tonight I am just so happy for my baby boy!

My parents came over to visit and my mother just happened to be playing with Dec on the table and had him sit up, and guess what.... He sat up, ON HIS OWN!!!  He is 10 almost 11 months hasn't sat up this whole time for this amount of time.  I rushed to grab my phone so I could record it.  It was awesome to see.  I know with all the work we have been doing with PT and everything at home, I knew with hard hard work we could get him to this point but to actually see it was beyond words, my heart just sings with joy for my little champ.  I don't know if this is a fluke but I don't care right now, I'm just so happy to see it.  Beat that neuromuscular disorder that we still don't have a name for ;P 

I apologize in advance about how excited I am on the video, I get a little high pitched.

Enjoy!!!

Love you Declan, you give me hope and make me believe in miracles!  

xoxoxoxoxo

RSV-Synagis shot

Just found out how much our co-pay is with the RSV shot (synagis)... OUCH!  Talk about pharmaceuticals getting rich!  

For those of you that don't know what Synagis is, it is used in the prevention of respiratory syncytial virus (RSV) infections.  It is recommended for infants that are at high-risk because of prematurity or other medical problems such as congenital heart disease, or SMA. 

All the doctors were "yes, if you get approved, get. this. shot".  What they don't tell you is how much it is going to cost.  I mean we aren't in the dog house poor or anything, but we are trying to save for a new home that will fit the needs of a special needs boy.  So it was coming down to a shot (where he still may get RSV) or a home (where said boy will live and flourish...) After talking with my son's nurse and explaining I can do one or the other but not both, and that I was leaning towards not doing the shot she found some funding for me.  So we are ok till at least January, then hopefully the nurse can help us find more funding. 

So do you want to know what much this magic shot cost before insurance? This is based on Declan's weight of 15lbs.

$3000 per shot, and Declan needs 5.  Our insurance will cover 80%.  That's $600 a month we need to cover.  Talk about highway robbery, and at Christmas too!  Luckily the funding the nurse helped us get drops that copay down to $50, till mid January. So if we can get funding for February and March we should be good till next year.. and I don't even want to think of next year yet.

Our shot is ordered and we are planning on getting it next week.

If you want to know more about this shot you can google it or go HERE the dark side of Synagis if you want to be talked out of it...

*Just a note to friends and family we are out on the gift giving this year, but we wish you well.*

I hope this shot is worth it.  We wish you the best and if you are following the path of the SMA journey we wish you luck.  May we find a cure soon!

Declan went to the voting booth with us.  His first vote!

Bullies

Nov. 9, 2012

Today, I wanted to talk about bullies.  My friends and family will be familiar with the situation my son has recently faced due to several topics on facebook.

Back on Oct 29th, I got a call from my oldest son "D" at school.  He was laying in the nurses office, because two boys in his grade had assaulted him.  I asked which boys and where they were.  As it turns out, it was the same two boys that had hit "D" earlier this year for no reason until a duty officer from recess stopped it.  The boys were currently in talking with the principal.  So I called my hubby and we met at the school as fast as we could. 

This is the story we received:

  He was walking out from lunch and didn't notice the two bullies walking by him. They started pushing him into a dirt pile when his hand flew up and knocked a sandwich out of one of the other boys hands.  Things escalated from there, and D took off running and tripped by the playground.  When he got up, the two other boys knocked him down again and then one sat on him, while the other kicked him on the ground. They eventually stopped and went inside and later the duty found D hunched on a bench...

Now, suffice it to say, the hubby and I weren't very happy (still aren't).  Bullying has been an ongoing problem since D has gone to this school.  It makes me happy that we are planning to move soon and I am hoping that the next school will have better anti-bullying policies than the current one.

We ended up talking with a sub VP and eventually the principal.  They stated since the boys are minors they couldn't discuss what was being done to the two bullies but we are sure to hear about it through the grapevine from our kids...  They couldn't give us any reassurance on our son's safety.  Now does that seem right?  The sub vp suggested that D just stay away from the boys and stay with the duty officer during recess.   I'm sorry, but why does my son have to be punished and not be able to play free at recess while these two little (insert inappropriate word here) can go play with their friends?  That doesn't seem right in my book.  Why not make these boys stay in from recess or make them stand by the duty and watch their friends play.  Something is wrong here with the system and this school just doesn't see it.  Again SO glad we will be moving.  You can't show a person that is blind to the world unless they are willing to look. 

We took D to the docs because he was complaining that it hurt to breathe and his lower rib looked a little bruised and swollen.  After a doctor's visit and a xray he was bruised but no breaks.   Just what we need another doctor's bill in this family right?  I mean come on! 

We talked with D and made sure he was ok to go back to school the next day.  We told him if he sees those boys at school to call us immediately, and we would pursue it further and possibly bring criminal charges against the boys. 

Well D had two good days without any bullies.  The boys were back in school by the third day.  A 2 day suspension was the boys punishment, after talking with the district a 3 day suspension is considered "extreme" and in 95% cases any suspension at all works well. 

Lesson here is being a bully and beating a boy up gets you 2 days suspension... yet no suspension from recesses.  One bully then tells the victim they beat up "thanks for getting us suspended now I can't play with my friend" and the other bully tries to antagonize the victim with words.

Looks like these boys fit in the 5% category...

To hit the dead horse more... the sub vp called the next day to see how the doctor's appointment went.  He said "well at least it isn't anything serious..."   I went dead silent on the phone, I couldn't believe him.  This is why this country has bullies, they don't think it is serious!  It happens all the time, but what does anyone do to stop it?!   I use to really like this school, but now I wouldn't recommend it to anyone. 

My son is smart, funny, and nice.  Even though he would be classified as a nerd or geek, look at the world.. who is running it?  The geeks and nerds, and where are the bullies in the world?  Jail, or local crappy job.  I just hope D can stand up and rise above the idiocy of his peers and the school staff.  And I hope he knows we will stand with him till he can stand on his own.  Pick on me all you want, pick on my kids and you are going to lose a body part.

D wearing Starwars shirt and reading Ender's Game what a geek!

D being a good sport and trying on a suit.

Declan update

Oct 26, 2012
Declan update:
Got a call from the Genetic counselor. We had a deletion test done on Declan for SMA, and it came back Negative! This is what she said:
This rules out SMA caused by problems with the SMN1 gene the most common cause of SMA. Since Declan has symptoms of SMA this test does not mean he doesn’t have a kind of SMA, just not the most common type. This does mean that medications tar

geted to SMN1 would most likely not benefit Declan, but continuing with the same respiratory, dietary and orthopedic management will still benefit him. I know that this result puts you back into the unknown as far as a diagnosis, and while on the surface it seems that a negative test result would be a good thing, sometimes not having an answer is much harder. We are looking into a couple of different new genes on a research basis for Declan as well as continuing to look at the SMARD gene.

So we are back at square one with no answers.. which is good? So on we go into the unknown. Declan is just too rare, but we love him anyway. :)

jail bird baby.

The Inner Workings

     If you want to test your relationship I have heard that building a home will do that for you.  Psh Never-mind having a son with special needs, you can get through that but the process of building and the choosing and the fighting, can and has split couples up.  We aren't even building yet, and we are already fighting about location and which company to choose, etc.  It is actually quite difficult to build a home for a child that will most likely be in a wheelchair.  There are a lot of choices, and things you can change on a floorplan.. for a price... knocking down a wall here, making the hallways wider, the bathrooms bigger, hard floors instead of carpet, and don't forget we will need a bigger garage.  We have almost narrowed it down to what builder we want, but I would really like to stay in our city we are in now, but that too also comes with a price.
    If you have a child in the same situation let me know what you have done to improve your home. Thanks!

We live in multi-level home, we have 3 staircases inside the home.  Staying in this home is not an option for us for matter how many lifts we got.  So the homes we have been looking at are ramblers.  Here is the kicker, we have to finish the basement for D&K.  I would love to have a room for Declan's therapy too.  I want this to be our last home, so it needs everything!  So now all we have to do is win the lottery to get everything we want!

If you want to look at the floorplan we are leaning towards click the link below. 
House

The two bedroom in the front and the main bath we would combine and make into a mini suite for Declan, and his therapy.  Widen the hallways and doorways, and put a ramp in the garage. The basement we would have a kitchenette and that would pretty much be D&K's domain.  It is a really pretty home, and I just hope we can do it.  It would be really nice not to have to deal with stairs.

Again if you have gone through this process let us know what we are missing.  We are learning as we go.  I am trying to make it as nice as possible for ME... I mean our family...

Also if you know of any grants to help with us getting into this new home, let me know ASAP.  I found tons to help improve our home, but none for helping getting a new one.
Thanks!!
Hug your loved ones, and wish and hope for a cure soon!

P.S.  Declan is doing great and is loving his mom.  I mean not even the grandmas can hold him... it doesn't free up a lot of time for me unfortunately but that's ok.  It takes me longer to do things, but Declan is just so damn cute I can't stop holding him.
Thanks!!!

Dreams and Wishes

It's funny how fast dreams can change or even wishes.  We got pregnant with our last child, I wanted a great pregnancy, I got that, no sickness what so ever, but Declan didn't kick the whole 9 months.  Declan was born and he is gorgeous, but the doctor noticed something was  wrong.  Then you know the rest.  So we went from dreaming of our baby rolling, sitting, walking, growing up to a healthy strong man with a wonderful life, to just having our baby live, a worthy life, not a life full of pain and sadness.  I think if I saw my baby sit up by his self I would burst into tears. Yes dreams change quick, but every time I look at our baby boy I can't help but to dream big.  My dream and wishes are for our children to grow up, become independent, go to college, have a family of their own, live a long healthy life.  So I am going to try to keep on doing that. 

We are still feeding him every two hours, he is only taking 90ml which is 3oz and we are bumping it up to 100ml now.  He likes his veggies, and won't eat fruit or the meat baby food.  We are talking with a dietitian now to help us with his feeding, we (parents) are still holding out on feeding tube.  I want his life to be as normal as I can for as long as I can. 

We will be starting on a cough assist machine soon though.  A cough assist machine is a way to clear the lungs.  SMA babies have a weak or no cough so the machine helps push in one breath and brings that one breath out.  It's like one big cough, this will help if Declan gets a cold.  Just another thing we didn't dream of.. machines all over the house... well these kind of machines. 

I am having a hard time thinking of where I should draw the line with machines and overall life support for Declan. I don't want him to have a hard life and a life with machines, but every time I look at him how can I not be selfish and keep him here as long as possible.  I think that is something we will have to think about later, if the tables turn but right now he is doing good, and is happy still breathing on his own. 

I know the doctors want us to plan for if things go worse, but I have not learned nor do I want to learn how to plan a funeral for my baby while he is still here and breathing.  I have looked but I can't dwell on it cause I just end up crying for the rest of the day.  I did want to add a video of beautiful song that I think would fit us "IF" the horrible happened. Grab tissues!!!    Coleen McMahon - Beautiful Boy

I hate the song yet love it, is that possible?  Told you to grab a tissue.  Like I said I hate to even have to look into things like this, and I don't wish it on anyone.  So give your babies kisses and hugs and hold on tight.  Ok lets move on to something else cause this blog is starting to get depressing!!

Here let me add some cute pictures of one of the cutest babies ever!!

PT time!

Happy Bumbo time

What's up duck?

Our First Cold

Sorry it has been so long since my last post. Things go from slow to really busy here all the time. So here is an update from our family.

Declan being sick

      So most of the readers here are probably wondering why I am writing about a cold.  I mean, for a normal healthy child/person a cold is nothing, it's just a pain in the butt sickness that comes every year and a few tissue boxes later you are back to normal.  However, imagine getting a cold when you already have a hard time breathing, and you are too weak to fight the cold off.  This world loses a lot of SMA babies to pneumonia that all started with a cold.  We tried so hard to keep Declan healthy as long as possible.  Then, School started and with that of course, the colds came home too.  It hit everyone in the family.  Declan made it just under 7 months before he got sick. I think we did rather well, or we were just lucky. 

Out of all of us Declan recovered the quickest, which is great to my little ears.  We were worried about how a cold would effect him. It took about a week and a half for him to get back to his feeding schedule.  He still has a cough which I had the doctor look at just to rule out pneumonia.  We are still keeping a close eye on him, but it looks like he is in the clear. 

     The doctor feels that with the cold, and RSV season coming, it would be a good idea for my hubby and I to get trained with a cough assist machine.  This is how they explained it to me.  It pushes one big breath in and then pulls that big breath out.  I know how to break up the yucky stuff which we do from time to time, but now it looks like we will get a machine to help us out.  I can imagine what this is going to do and I hope I don't lose my lunch in the process.  The things we mothers do for our children! 

     I honestly can't imagine this world without Declan so if I have to do some dirty jobs to keep him here then I will.  He gives us so much joy, and he is the cutest baby (maybe I'm bias...) His expressions are great and I don't know if it is because I am older or what but I have a lot of patience ..... well when it comes to Declan....  I am sure my hubby feels the same, and D&K just love him.  Declan's face just lights up when they come home from school.

Declan with Mommy.

Declan at his 2nd sleep study

    We also had our second sleep study done with Declan.  He didn't like getting hooked up to all those wires again but he did well.  We received the report and he is doing really well, better than last time, and the doctor believes he doesn't need a BiPap.  

 


  We have a scheduled doctors appointment with Declan's neuro docs and I am hoping they have an update on where we stand with diagnoses or give us something we can work with.  We continue with physical therapy and occupational therapy and it is helping.  Declan's head is becoming stronger and his trunk (chest and tummy) are becoming stronger too.  We still have a lot of work a head of us but we are seeing results.

      Keep sending good thoughts our way and many well wishes.  We hope we can make it through this winter without getting sick again.  Thanks to all who read our blog and I hope anyone needing information about this disease can find help and I hope I provided you with enough info to get started.  May we find a cure soon!