Tuesday, November 20, 2012

"Bee's" Journey continued

My little Bee who was so very sick was sent to an ENT (Ear, Nose, & Throat Doctor) and he was confirmed to be profoundly deaf.  I cried and cried.  Not because I am not familiar with the fact that deaf people can be amazingly successful.  Not because I would not be able to communicate with him and understand his hopes and dreams.  I cried because I knew that his life would always be a fight.  I knew that having a lasting "disability" would mean a lifetime of working 10 times harder than everyone else and always having to prove himself.  I knew that a good education would be a fight.  I knew getting other family members to learn my child's language may cause a permanent wedge in relationships with loved ones. And after years and years of what I THOUGHT I knew, I realized I knew nothing when it was applicable to my little "Bee".  Everything I thought I knew about the right educational path, medical approaches, I questioned.

His expressions say so much.

The ENT said he needed emergency surgery and scheduled him for next day surgery to get tubes.  He was so sick that his whole body was turning septic and he had chronic yeast infections in his groin and occasionally had thrush.  I asked him to also complete a blood panel to test for food allergies.  I was expecting dairy and eggs.

Surgery was completed.  He was still profoundly deaf.  I remember tucking him in that night.  I had sung to him every night of his life and at that night I thought doing so was silly.  There was no point in singing and I thought that we would need to create a new tradition.  He tapped on my chest and started to make a vibrating noise.  I tried desperately to keep myself together as I finished singing him his three lullabys and said a prayer I knew he could not hear.  I added a little sign language to our new routine.  And then I left the room and cried.  There was something so bittersweet about that moment, that still brings tears to my eyes today.

It took almost a full 8 months for Bee to get a passed hearing test, but he had failed 4 prior.  So the results were not trusted and we were told to come back again due to so many inconsistencies.  He was still not picking up a lot of language however, so we did an ABR test to confirm.  It was confirmed after 12 months that he was indeed a hearing child... with significant language issues.  The language issues were thought to be "preemie baby" and "prolonged deafness from chronic ear infections". 

We also got the results of our blood work regarding food allergies.  I pretty much knew milk and eggs were allergies and thought soy was plausible.  I am so thankful that I was sitting down when they called.  The doctor asked if I had pen and paper ready.  I said sure go ahead thinking I was prepared for the list to come. 

Anaphylatic (meaning if my child ingests this or gets it in his mouth these foods and he could potentially stop breathing and die):
      tree nuts,

Severely allergic (meaning projectile or severe vomiting, diarrhea, bloody stools, hives, stomach aches, nausea) to:

Moderately/Mildly allergic (will cause our child to vomit and break out in rash) to:
     and tomatoes. 

I hung up the phone and cried.  I had no idea what to feed my baby.  Everything in my home suddenly became poison. 

Since that time we have learned that "Bee" also has celiac disease and "leaky gut" syndrome.  He also is no longer allergic to coconut, soy, or corn.  We are soon going to be doing a peanut challenge (more on that later!) He still is plagued with a gluten rash periodically.

Gluten rash AKA Dermatitis Herpetiformis

Bee is still learning language.  He babbles a lot.  He says many words, a few 3 word sentences, and a few little phrases.   They are all magic to my ears.  He goes to speech therapy for language and speech development, hypotonia (low muscle tone), constant drooling, and swallowing issues. He goes to OT for hypotonia related issues and motor planning.


So, I still long to hear my son's hopes and dreams.  I still cannot wait to have in depth conversations with him. And it seems everything in life for him is a fight.  He fights to achieve and I fight to remove obstacles in his way. I fight to get his needs met. I fight to have a safe environment for him. But, I know that as much as I fight with the world everyday, "B" fights harder to achieve all he can.  I sometimes get frustrated, discouraged, and even angry.  Bee does it all with a grin on his face and a light in his eyes.  He communicates so much with one glance, one coy little shrug of his shoulders, and a mischievous grin.  I thank God that everyday, everyday there is progress. A new word, more muscle strength, a newly learned concept, and his "fight".

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