Monday, June 29, 2009

This is hard...

OK, sorry for not posting for a few weeks. I really want to go all the way back, almost 2 years ago, so that you all can have a better understanding of what Asa has been through and has overcome. But, it is hard to write down EVERYTHING. So, I want to start over with this post and inform you of what is happening now with Asa. I will refer back to the past some, but what is important now is just how far he has come and how blessed I am for my friends, family, and most importantly God.

My last post left off during his first week of life. Well, let's just sum things up. Basically, we have been to pediatric neurologists, gastronologist, pulmonologist, pediatric surgeons, ENTS, pediatric optometrist, optomologist, pediatric neurosurgeons, and a pediatric genetic doctor. Asa will be two in August and so far he has had 4 surgeries, 3 MRI scans, 2 flow studies, numerous echos and EKGs, numerous barium swallow studies, 7 hospital stays for complications, 15 Emergency room visits, 2 spinal taps, and countless hours of speech, occupational, physical, and vision therapies. Yes, he has been through alot his past 23 months and all the Dr's, therapists, lab work, etc. all say the same thing...we just don't know. I got so sick of hearing these professionals poke and prick my child without any knowledge or reason of why Asa is the way he is. However, they all agreed on the same thing..."HE is just developmentally delayed." But why? I kept asking. Nothing happened during the birth, my pregnancy, NOTHING, there just has to be a reason to this. So, I insisted on a second MRI this past April. The present MRI findings showed that Asa's white matter in his brain is not growing. Basically, Asa's brain is around the range of a 8-9 month old. Usually, when this happens, it is due to a metabolic disorder. We had that blood work done. It showed nothing, however, it showed a increase "alanine" level. Which made the Dr's. suspicious of a mitochondria disorder. We were then referred back to Shands and there Asa's genetic doctor, who he has seen 3 times before, informed us that he truly does not know why Asa's brain is doing what it is doing. Nothing points to a definite mitochondria disorder nor to any other syndrome/disorder that he is aware of. So, Dr. Williams referred us to a speciality medical neuro genetic clinic in Atlanta, Georgia. It is head by Dr. John Shoffner who is world known and respected for finding the cause and treatments for rare diseases. I had to submit, along with the doctor, a 24 page packet, where Dr. Shoffner had to read and actually approve Asa before we could go. This is a private facility, it is not under a hospital name, because it is so state of the art, so everything will have to paid for becasue they do not take any state health benefit plans or special needs medicaid. Dr. Shoffner approved our visit and we are scheduled to go up on July 8-10 where Asa will go through extensive testing from a stool sample to a several biopsies which include that of the muscle, lumbar, and the actual brain itself. IT is going to be a hard 3 days. I just pray for God to give this doctor the patience, the empathy, and feel my desperateness as a mother of a child who has something she just can't fix.

With it being summer, I enjoy every week I have with him. He is so happy. HE is also going through his terrible twos. I just know it. HE is still not walking, not saying words, but he babbles, laughs, and can crawl as fast as a any baby that I have seen. HE wakes up around 7:30 smiling in his bed. I do the usual morning routines like changing diapers, getting dressed, medicines, breakfast, breathing treatments, etc. By the time I am through with all of that it is around 9 am and we always go for a morning stroll in his stroller. Gosh, he just loves it. He starts to laugh and get excited as I put his hat on and grab my sunglasses. Another thing Asa loves is books. Well, he loves to eat them but he loves for me to read to him. I have been reading to him since he was 2 weeks old.

Anyways, from this point on, I am going to talk about my day with Asa. The good parts, the discouraging parts, and the "answers to prayers" parts. I hope that you all are enjoying reading about Asa's way. Stay posted for more.


  1. Mrs. Dow, Our family will be lifting yours up in prayer. There must be some answers out there somewhere. Maybe someone will read your blog who can help or give you some leads. We both know God has a plan for you and Asa.
    Love you and thank you for giving our Bryce the best year he could possibly have in 2nd grade.

  2. You are so strong and Asa is an amazing little boy. I love this blog and will continue to follow you on your journey. We are wishing good news for your next round of appointments. Our prayers are, of course, with you.

    Alyson Hodgkin