Tuesday, May 13, 2008

Journey through Journal

This past couple of years have been a roller coaster ride. April 17, 2007 our son, Brayden, joined our family. From that moment on, I am continually reminded that our life is the Lord's and He is in control. This blog is a place for me to put my thoughts and journey into writing. I have never been one to journal but this past year has filled me with so many random thoughts and emotions that I need put to writing to help make sense of it all. This is my journey being a mother to Brayden, a handicap child.

Some background on our precious Brayden
In the fall of 2006 we found out that we were expecting our third child. The pregnancy went pretty well, despite extreme morning sickness. The sonogram looked great and we found out that we were having our third boy!
On April 17, our third son, Brayden, joined our family. The day after he was born, concerns about the size of his head were expressed. His head was extremely small; it did not make it on the growth chart. Tests were done for exploration. He appeared to being doing well, we thought all of the tests were precautionary and everything was fine. Brayden had a head ultrasound and it revealed that he was missing part of his brain and had additional abnormalities. The ultrasound could not provide a clear picture and we were instructed to schedule a MRI to review his brain in further detail after he was three months of age. Thankfully Brayden was nursing well and he was able to come home with us.The next few months were filled with tests and specialists. All of his major organs needed to be checked to rule out additional complications. We saw just about all of his insides, all of which were functioning and doing well. The big test was the brain MRI. The MRI revealed that Brayden’s brain was missing parts and the rest was abnormal. Today we are still learning what all of this will mean for his life.

Brayden struggles with seizures and we try to regulate them with medication. He is severely visually impaired. Brayden has a G-J tube and is feed by j-tube (into his intestines) for about 20 hours a day. He struggles with chronic vomiting and we have been in and out of the hospital for it...alot. But at home we pump his stomach, by a big suction machine, several times a day for about 30 minutes. Developmentally he is close to a newborn. He cannot hold his head for more than a few seconds. He needs constant full support.

Brayden sees a list of doctors and specialists on a regular basis: neurologist, ophthalmologist, occupational therapist, physical therapist, feeding therapist, vision therapist.

One of the big questions is his condition, handicap, label, etc…Well, it all depends on which doctor we are seeing and what part of his body that particular doctor is looking at. Brayden has a lot of things going on and here is what we have figured out so far (don’t worry if you have no idea what the terms mean, you can google). We have learned that the doctors, therapists, and insurance use these fancy labels to get Brayden services, treatment or therapy but not one single term describes Brayden.
· To the neurologist: ACC, seizure disorder, cerebral dysgensis, microcephaly, pontocerebellar hypoplasia
· To the occupational and physical therapists: cerebral palsy, developmental delays, mixed muscle tone
· To the ophthalmologist and vision therapist: visual impairment, optic nerve hypoplasia
· To the GI doctor and feeding therapist: feeding difficulties, G-J tube, chronic vomiting

Brayden has a a lot going on and we are still trying to understand what all of this means. Thus my journey is understanding it all.

An updated list of Brayden's diagnosis:
Brain
Agenesis of the Corpus Collseum (ACC)
Microcephaly
Seizure disorder – partial complex seizures
Cerebral dysgensis
Pontocerebellar hypoplasia

Cerebral palsy
Nonambulatory

GI
G-tube, mickey button since April 2008
G-tube replaced with G-J tube Sept 2008
Delayed gastric emptying
Chronic vomiting
GE reflux

Eyes
Visual impairment
Optic nerve hypoplasia

4 comments:

tara @ kidz said...

Your husband's cousin Andrea told me about your blog and I'm so glad she did! Your little boy is a treasure.

I'd love to share his story on my site to raise awareness and send support your way. Let me know if you're interested! Best wishes.

Tracy said...

I just joined your blog recently. There are similairities in your story to Jackson's life. I have actually learned a few thing from your blog! Thank you so much for telling all of this.
I know we don't know each other but if you need anything, I will be there for you.

Pamela said...

New follower - God Bless your family.

Jill Zane said...

I just found your blog and I, too, have a little boy with many of the same symptoms especially chronic vomiting. I would love to learn more about your little guy and what works because, much like you, doctors have no idea what's wrong. Please feel free to check out my blog at causecadencan.blogspot.com