Saturday, January 1, 2011

Encouraged to continue....

Wow! I can't believe it has been so long since I have posted. I almost feel ashamed to even say I have a blog because I have been so inconsistent with it. However, over Christmas break, my grandmother told me that I should continue posting as much as possible, even if I really do not have any updates on Asa. She encouraged me to continue and explained that my postings could one day be an encouragement to mothers who may be experiencing the same things that I have with Asa. where do I start...ok..Asa turned 3 this past August and started to attend special ed pre-k three days a week from 8-12. He has really enjoyed going to his school and everyone there has fallen in love with him. Asa is receiving his therapies there also. Asa is walking, marching a little, and can feed himself small snacks at times. We still are having difficulties in the chewing  and oral motor department, so his foods usually have to be around a "Stage 3" baby food type so that it is easy for him to move the food around in his mouth. We continue to use g-tube to give him daily meds like Prevacid, Multivitamin, CoQ10, and others as needed. We also use the g-tube button to burp him and to supplement his meals by giving him Pediasure, etc. this is to make sure he is getting the right amount of nutrition necessary. We have recently taken him off gluten-completely and are possibly seeing some positive signs from doing so.
 Asa is still not talking...not imitating sounds...or even attempting to communicate. He continues to do alot of babbling and can point to some things he wants, but this is at times inconsistent. I know all of Asa's wants and needs, so it is very easy for me to know when he is happy, sad, and frustrated....I will continue to pray for the day that he will say my name....mama
We did have sort of a scare a few weeks ago. Andy and I noticed that Asa was walking and then suddenly losing his balance alot...we blamed it at first on him being more tired than usual because of us being out of town for Thanksgiving. The balance issues continued. What I mean is, when Asa was walking, he would fall to the side for NO reason...we even noticed some other strange behaviors but are hard to explain in words...let's just say that we knew something wasn't right. To make a very long story short, we ended up at Scottish Rite hospital and saw Asa's neurosurgeon who admitted him for some testing. He had a CF flow study done and another MRI completed. The exams show that there was some dysmyelination represented  in the study. The doctors said that this is probably because of his Mitochondrial disease progressing and therefore are causing difficulties with his motor skills. We will be following up with his neurologist on the 5th of January.

I know this is alot of information...and Ieven left some of it out...if you can believe that. So, this is where I am now...I have tried to be in control of this since Asa was born!   The thought of this disease taking away my Asa's ability to walk creates a feeling inside me that is unbearable to comprehend....but, it was God's way of telling me "Carolyn, give it to ME....just love Asa"
That is what I will do.....


  1. :) I'm glad you're posting again! I have checked in at times just to keep up with y'all. Asa got the best mommy possible for him! :) I do have one question though...what changes have you noticed with the gluten-free diet?

  2. I'm so glad to see an update on your Asa! I found your blog when I was googling Dr. Shoffner. I have a 3 year old (10/7/07) named Asa who has mito! What are the chances of that?! My blog is

    I hate to hear you may be seeing some progression of the disease! Hopefully you'll get better answers at the next appointment.

    Happy New Year to you family!