Declan's 1st Birthday!!

Declan is ONE!!

Can you believe it?  We made it, one year.  You can ask anyone I was so excited for this day to come.  I was gearing up for it weeks before.  I wanted to have a big party but since we are still waiting for spring to come, I kept it small.

We had a potluck and I had four different kinds of really good soup.  Thanks for our families for making those.  They were really good.

Present time was about what you expected he liked the bows and tissue paper more than the presents.

But we sure appreciate everyone who came and he is loving all his gifts.  Thanks!

But what we can't forget the cake time!

 Declan is ready!

We all sang to him and he was smiling back at all of us, so I know he liked that part.

Declan didn't know what to do with the cake, he was just kind of poking at it so I helped him out.

But he got the hang of it, and was slopping it up in no time.

Happy 1st Birthday Declan!!!

After all said and done, it was too much for the babe and he finally crashed.

I added a few more picture below.

The Journey so Far

We had a Christmas party to go to and since there were going to be a lot of people there we decided not to take Declan but we wanted everyone to see how far he has come, so hubby and I made a video.  It was my first, and there are some glitches in it but I hope I can get hubby to fix those for me soon.   I think it turned out rather well.

Thanks all for checking in on our little family.

if the video doesn't work go here:

Declan Video

The Holidays

Dad and Dec, of course dad is hiding.

     You know when time seems to speed by when it comes close to the holidays, well our house is no different.  Trying to get the house ready to sell, taking care of a special needs baby, two school age kids, the hubby, and add the holidays, yeah don't judge you wouldn't have any time either. ;p

 


                                        Halloween

Well you could say our Halloween was a little eventful but we got through it, and the kids loved going door to door.  It was starting to get cold, so we started to lock down on when we took Declan out.  But he did wear a Halloween sleeper and stayed inside with Dad while I took D & K around the neighborhood. I was the neighborhood witch, D was a zombie hunter, and K was a vampire.  Halloween is definitely my Favorite holiday.

mom and Dec.  I love this babe

 The house was lit up with lights, spiders and webs, all sorts of things.  The kids kept saying Thanks for a great Halloween mom.  So I'm happy.

D, K & Declan on Thanksgiving

Thanksgiving

Don't worry it was quiet.  We stayed home, and had a big dinner with some family.  All the trimmings, and not to mention all the pies... I say thank you, but my body was saying 

"What are you doing to me!"  

Oh well, that is what Holidays are for right?

My kids are getting so big, and they are changing daily.  Little D especially, he is growing up to fast and I am enjoying every minute of it.  We have been able to keep him healthy and he is showing us a world of miracles and of hope and dream.  Love it!

Christmas

All the stocking were hung with care, the tree was lit with bright lights and family ornaments, and Declan could care less.  He didn't care one iota for this big tall bright tree, or anything under it. All he wanted was mom, and then some more of mom.  This separation anxiety is getting really bad.  We are still locked up for winter rarely going out, we have cut out most family parties.  We did go to one party, my mother watched Declan so we could go, and since we wanted to show off our baby boy, hubby and I made a video of our journey so far, I will post that video on another post so keep your eyes open for that one.  Even though we did a small Christmas I believe the kids had fun, and enjoyed all they received.  Declan liked ripping the paper more than the toys, but he has a short attention span and pretty much loves anything you put in front of him.  Oh I forgot, anything except his food, then he just spits it at you.  Trust me my face has been the receiver of food at late.   We all stayed up for the New Year, yes even Declan, banged pots and pans and drank apple cider at midnight.  We are wishing for a better year with health, no more surprises (the bad kind), and getting into a new home.  

We wish everyone well, and hope for a cure soon!

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.