Tuesday, November 25, 2014

Scoliosis and Schizencephaly

It has been two weeks on Wednesday since Noah's spinal fusion and I will admit fear was a huge issue with this one.
Never did I imagine seeing my little boy look so banged up. His eyes were bloodshot, black and blue with a very swollen face.
The night before I was prepped with the fact Noah very well may not make it through or quite possibly require a trach for the rest of his life.. Scary and sobering all at the same time.
After xrays the day before we learned Noah's scoliosis had reached 94-97 degrees which is 40 degrees more than just a year ago which convinces me that scoliosis is indeed a huge part of schizencephaly. We waited until Noah was old enough to avoid multiple surgeries through the rest of his life....one and done! But holy cow scoliosis is hell. The constant fighting it, struggling to make our own braces, 6 years or positioning and holding off to avoid going back under the knife. It would appear that all that hard work made a difference and Noah will never need another surgery after this.

This helps further research and awareness even more since we can now confirm through the multiple families that have faced this issue alongside Schizencephaly that it is appropriate to say this is another underlying factor that is quite likely and hopefully with the awareness, preventable
  This was one of those surgeries that no matter how hard we prepped we could not possibly tell if Noah was comprehending.
Looking into his big blue eyes I shed many tears but much to my surprise he seemed OK with the hospital check in.
  Somehow I would like to believe he was in so much pain he had decided that the past has proven he knows he can trust me and his brother with these medical decisions.
  Surgery was November 12th exactly 1 year to the hour as his hip surgery last year (worst recovery ever). As we sat together the night before I just held him knowing I would never hold him that way again after the rodding. It was OK. I knew this one was a necessity for his growth.
He would look up at me and grab my hand like he was acknowledging my struggle with this and he would squeeze tight as if to comfort me, which made me feel assured he understood more than I thought.
Surgery day they rolled him into holding at 8 am and my stomach was full of knots. I kept wisping his hair in my hands and hoping the red face and difficulty breathing would soon be lessened after this all.
Around 3 pm they came in to say Noah was out and breathing on his own. I always say some of these moments are the most profound so far but this time I truly meant it. I could not believe his little body that had gone through over 23 surgeries to date had once again proven the drs wrong. But then again, this is my son we are talking about .
When I walked into PICU my jaw dropped at how awful he looked. I broke down in tears watching the breathing tube attached to him and the line coming out of his neck. I kept saying "why does he look so bad?" And the staff assured me this was normal and he was already breathing 85% on his own..
The next few days Noah's smile returned and many things were noted with him including no more red face. As described to me and big brother Noah's neck was at high risk for suffocation. His neck was so twisted he was much worse than the Dr ever suspected. Although they did not know if the neck would correct they were pleased that it in fact had straightened and he was no longer red or struggling for air .
He was also breathing through his nose for the first time in three years. His whole quality of life was changing and to me it is nothing short of a miracle .
I have to applaud the surgical team at Miami children's for their amazing work and for helping Noah have the quality of life he deserves. If it were not for their belief in being able to fix him (something local drs said was too dangerous) I don't think he had much longer of this life with his oxygen being compromised daily.
  The life of a special needs single mama never is easy. We smile through tears and walk through many storms holding our head high and leaving so much normalcy behind but it is always worth it..

  I do have to say his strength builds mine up. Although I sacrifice many things like hanging out with friends, drinking more than one drink in case anything should happen and we won't go into the dating world because that is just a nightmare, it is always worth it.. The way I see it is that these sacrifices mean so much more than an hour of this or than an inconsistent relationship that is not a given. Noah's love and hope is what keeps us all going. His will teaches me that the kind of love he is filled with is the purest of any I've ever known and I doubt I could ever find anything quite as amazing as what I feel looking at him.
  So here we are now today looking back at the anxiety and stress leading up to this major surgery and we are good. He is good, he is smiling and playing again. He is aware things have changed anatomically but he gets it, he is breathing better and looks like a new child. One that is not in pain and struggling for air. And I am so proud of him for proving to me once again what a strong and brave warrior he is.
  So although the small things that were during and after this surgery were bumpy and kind of crappy they aren't worth worrying about.. The only thing that will continue to matter in our world is that we always do what is best and right for our children. Because ultimately nothing else really matters but family.

And our little family is amazingly strong and stable.
My love and thanks to many people that were by my side and made this so much easier.
Nicole Molino for coming up to the hospital the day of surgery and making me smile through the worry..
Denise who helped me understand her surgery and what to expect
Stephanie Byrd for coming up to visit and getting me a discount at the Walmart (:
Miss Stephanie Ziemann for listening to me bitch and talking g me through everything when I was about to walk out the hospital (trach talk)
  Raymond for texting every day to check in on me and in on Noah

 Noel for multiple reasons.

Father Andy for being amazing 

 All the prayers, calls, cards, and posts the day of surgery. They were all noted and very appreciated. Thank you!

Regina and Mark for helping Noah get his seizures controlled until we can get the heck out of Florida.
And of course Dr harry shufflebarger who has the hands of an angel and decided to help Noah when no one else thought he was worth it..
All of you are my ✊ rock and I will never forget your help

Noah- 23
Schizencephaly- 0

Sunday, September 21, 2014

A place in the sun 7 stages of accepting the unexpected in special needs.

I felt it was therapy to write this book and share with other how I have dealt with my mourning through the last 14 years in being a special needs mom
 I hope others can understand that special needs diagnosis's can be like mourning a death but our stories remain open.
 Please get a copy and share with others dealing with depression and guilt associated with any uniquely gifted child.


https://www.createspace.com/4979806

Thursday, September 18, 2014

Schizencephaly Super hero of the month

We are RARE is excited about our new Super hero highlight on our website.
 We welcome families to sign up their children and allow us to share stories and pictures for a month as our special family .
 Your family member will also get a custom made super hero mask as they are joining an elite force of warriors
Please sign up here.\
http://www.wearerare.org/rare-super-hero/

Monday, September 8, 2014

Sunset in the keys with noah

What a wonderful vacation swimming with the dolphins with Noah's schiz buddy Andrew

Weight gain on a blended diet

Noah is doing amazingly well on whole foods with no more formula.
No more reflux and he's gone from 44 to 72 pounds

Thursday, July 31, 2014

Blended diet's and why they work

So it has been over two years since Noah began his blended diet journey.
He started out at 44 lbs in 2012. The decision was scary and took a large bit of my pride knowing that this was the only solution that could possible keep him alive.
Of course the surgery was easy enough. But I wanted to continue Noah's feed via mouth as well since it was important for me to keep Noah eating like he had and just adding healthier foods via the tube and liquids to keep him hydrated.
The sent us home with his first formula called omni lite. That one was fine at first but Noah started with some vomiting after a few weeks so I asked the GI to find another one that would suit his sensitive tummy.
Next was vital 1.5 oh boy did this one cause havok on his body... Within a few days this horrendous smell was coming from him. I smelled like straight up ammonia. That smell was so intense it was enough to gag me.
The GI sent us to get tests to find out if his pancreas flwas failing when I kept insisting it was the formula not him.
Guess what? Tests came back normal.
I refused any more formula after that test knowing I had to find something better to keep him healthy. I started with doing bone broth. That helped clean his gut out and got us back at base line.
After that I got an industrial type blnder from blendtec and decided to start blending all Noah's foods myself.
To my surprise Noah had gone from 44lbs to 53 in two months using this method.
The next GI visit had us so frustrated because once again they wanted to add yet another crap formula to increase his weight even more (even though my method was clearly working)
I agreed to try pediatric compleat this time since it was based off of a whole food diet concept
This one was the worse. Within a day my 6 year seizure free child began seizing uncontrollably and the ammonia smell was back.
Out went that formula! The GI still insisted on trying more when I finally told them it was my way or he will find a new GI.
These drs simply do not understand the need for special needs children to have healthy and nutritional foods and insist of throwing chemically made formulas down his throat. The man made sugars and GMO in these formulas are not even substantial for an animal let alone a special needs child dealing with complex syndromes.
Since our formula days are now far behind Noah is no longer seizing and having reactions. His weight is almost 70lbs all from real foods and no artificial man made ingredients.
He eats better than anyone in my family and as a result has not needed miralax or anything to help him go to the bathroom.
His quality of life has improved tremendously and he is no longer producing ammonia smells.
  There is no simple coincidence that these formulas and my sons health were declining. The fact remains the whole food diet is rich in natural vitamins and healthy foods.
Although his consumption is over 4000 calories a day he is gaining nicely and his osteoporosis has improved! And no Kore seizures
First picture is Noah at 44 lbs and second is Noah today a little over 70 lbs.
The proof is in the pictures.

Tuesday, July 8, 2014

Pep talks with my little warrior

Scoliosis surgery is looking like a MUST
Me and Noah have been staying positive and talking all about it.