New neurologist+new perspective=new HOPE

Gosh....again I feel guilty for not updating this like I planned in the beginning of this journey. So, I am just going to start with the latest. This Friday, April 15, Asa saw a new neurologist at Children's Neurology Associates in Atlanta, Georgia. We were previously scheduled to go back in January, but he got the flu. Then we rescheduled it for February....he got sick again. So, this has been an appointment that should have happened a while back when we left the hospital in December. However, on Friday, Asa was ready and having a great day.

The neurologist's name is Dr. Janas. The only one of Asa's doctors who is a woman. Asa took to her immediately. There was something about her that was very motherly, kind, understanding, and patient. She took up about a total hour with us, unintterrupted, which was nice. I know that she will not be able to do that all the time, but she truly wanted to know ALL of Asa and about his accomplishments and concerns. She explained alot of things that I already knew about Asa's Mitochondrial Disease. I know that the disease is different for every child. It does different things and truly only God knows the outcome and how it will affect Asa. My main concerns that I brought up was Asa's balance when walking, him leaning towards the right, oral-motor issues, overall motor planning, and especially...his speech. He has had speech therapy since he was 2 months old....and still....nothing. Yes, he understands ALOT. He can point to what he wants, express in specific sounds his likes and dislikes, and follow directions when told--most of the time. So, like I have said in previous posts-Asa's recessive language is EXCELLENT. So, with all this explained she was concerned about Asa having a speech disorder called Apraxia. Basically this  disorder which is caused by his cognitive delay of his mitochondrial disease.To make it brief-there is a glinch(sp?) in his brain that does not allow the speech to come out.  It is kind of like he knows what to say...but he can not get it out. There is simply a processing disfunction that will not allow the words to come out-which can lead to him feeling very frustrated. I have researched Apraxia before and this disorder does make perfect sense to me since all of his issues, since birth, have almost been connected to the mouth in some way and with processing signals. For example, when he was born  he was unable to swallow, suck, chew, his epiglotis  could not shut properly, aspirating, excessive drooling, etc. The speech therapist that he currently sees will do the testing for Apraxia so that we know for sure. If this turns out to be the case we must teach Asa, like we are doing now, other means to communicate. These things are like sign language, pictures, and other augmentative speech devices that will help him succeed in expressing his needs and wants.

This disorder, along with the mito, is different for every child and hopefully one day Asa will say, "Mama, I love you."....or he may not ever be able to express himself vocally. I have come to realize that even if the words do not come out of his mouth......I know he loves me, his father, his Nannie, his grandparents, etc.  That I can see everyday in his beautiful blue eyes.

The other thing that the neurologist also confirmed was Asa's hypotonia. Hypotonia is very low muscle tone due to the fact that his mitochondria does not produce enough energy from the foods he eats to strenthen his muscles. Asa's muscles are kind of always in a "tired" or "weak" mode. However, you would never know it if you saw him. He seems to be going 90 to nothing these days. So, she prescribed hippotherapy which I am estatic about!!!! This kind of therapy is basically horse back riding where when the child sits and stablizes their body on a horse, they are forced to tighten and strenghten all muscles in order to stay on the horse. Asa loves horses so I believe that this is going to be a great therapy for him. I am blessed to say also that we actually have a place in Hahira, where I live, that does this sort of therapy. I am extremely excited about getting him started on this.

Lastly, all in all it was a good visit. She was very informative, straight forward, and also compassionate. However, at the very end of the visit, Dr. Janas looked at me and asked me if I have accepted that Asa will never be normal. At first.....I teared up....my mother teared up...then she teared up.   I simply looked at her and said. "Yes, I have."  I then giggled and said..."Hell, who is normal?"

I will keep you posted on the outcome of whether or not Asa truly has the speech disorder Apraxia and how his hippotherapy is coming along. Thanks once again for listening.

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.
Gosh...so 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.....