Thursday, August 30, 2012

Hope for the Future

We have so much to be thankful for! Our trip to Wisconsin for hyperbaric oxygen therapy has opened up a whole new world for Lilly and our family. 

I mentioned in our last post that Lilly was gaining in her speech and receptive(what she understands we say) language. The progress has continued! Man, I hope I can convey this clearly because it's the little things that build to better communication. Here are some examples:
  • Following simple directions. Ex: just this morning, I found Lilly sitting on her toy box. I was able to ask her to stand up and go to her bed so I could change her. She then started scooting her little bottom to the edge of the wooden toy box, stood up, and walked to her bed! She did none of this before hbot!
  • Word approximation. Ex: Lilly now uses "c" sound to request her cup. We are working on putting "c" and "p" together. If she hears someone use a word that has the "c" sound she will make that noise. She is recognizing the sounds of words. 
  • Social interaction. Ex: Lilly was always content to play on the floor of the living room or her room by herself. She might occasionally gaze at you or say momma to get your attention. Now, she wants to be where you are, in the same room, on your lap, etc. If we are all watching TV and she wants your attention, she will crawl/walk over to you and climb up into your lap. Literally, in your face pay attention to me! lol It has been so cool to see how this has changed relationships in our house. Now there are somethings that are happening that we are having to adjust to. If Craig is working in the evening and Bitsy, Lilly's aid, is not here, Miss Lilly wants to be smack dab in the middle of meal preparation! Oh boy! Another example of social interaction is her 100% consistency with saying "bye, bye" to everyone she meets. Waving hello is starting to emerge.
I'm sure I am forgetting something because it is amazing how quickly all this becomes the new norm and you push for more, and more. I do want to mention that all the above is being confirmed by teachers, paras, therapists, and people she hasn't seen since WI. Her physical therapist has commented on how she is following direction better and how that has impacted their sessions. She said we have made a believer out of her!(Referring to hbot) I have received countless comments and emails from her Special Education teacher since school has started. This is the same teacher that she had last year. I want to share a snippet of her last email. You don't know how much this means to hear stuff like this!
"I just want to share with you what I have been telling the paras and therapists. Lilly is doing things we couldn’t even hope for last year. For example, she will sit on her bottom on the floor for over 20 minutes while we do group time such as calendar, social skills and academic circle time. She will look over at the xylophone longingly but when we ask her to stay, she does! She watches our faces more and her receptive language is much stronger. YEAH Lilly!"
One of her IEP goals was to sit and attend for like 5 seconds, so this is a huge improvement! And this year, instead of riding to school on the bus in her medical stroller, we are climbing the stairs and sitting in the bus seat!

Now on to the "Hope for the Future" title. While in WI, the owner of the center told me about her daughter and how this doctor had helped her speech and cognition. Of course, we wanted to meet him!

This past Tuesday, Lilly and I returned from Irvine, California, and our first consultation with Dr. Dan Rossignol. Be sure to check out the links I have embedded and learn more about him and the biomedical treatments he uses in his practice. Dr. Rossignol is also the father of two boys with autism. After looking at an in depth case history of Lilly and asking some questions, he thinks Lilly may have a mitochondrial disorder and cerebral folate deficiency. He feels that a lot of Lilly's symptoms, low muscle tone, cognitive deficits, and non verbal, could be due to these two and not her chromosome abnormality. 

Mitochondria are the energy makers in our cells. They are in every one of our cells. So, if there is some dysfunction and the energy can not be made the cell does not function properly or dies. 

Cerebral folate deficiency(CFD) is a little more complicated to explain. I will try: In your spinal fluid, you will find folate....boy, I hope I'm getting this cross the blood brain barrier, you need folate receptors. There are some times "things" that keep the receptors from accepting the folate. They fit together like a key. And sometimes your body makes antibodies to the folate and attacks it, like an autoimmune disorder. You also need energy for the folate to pass through these receptors, so if you have a mitochondrial dysfunction, you have no energy for that process. Aren't our bodies complex?!?! FYI....cows milk can cause this as well in some people. So glad we don't drink milk! Sorry, farmers: ) I have links to the medical articles that explain this so much better than I, but was very thankful for my semester of Anatomy and Physiology so I could half way follow!

Here comes the hope; they are treatable!!!! I just got a lump in my throat just typing this. Praise Jesus! I don't want to mislead anyone, we don't know how much we will get back, but it means that Lilly will continue to improve and improve and improve! We are waiting for her new medication to come in and we will be starting that immediately. We will be having more blood work done this weekend to give us more answers, as well. 

Another exciting thing.....we are getting a hyperbaric oxygen chamber for our house!!!!! This has helped Lilly so much and she needs to be getting these treatments as often as possible. Again, take advantage of the hyperlinks to get more information!

We are so thankful for God's continued guidance down all these paths. I can't believe what we have learned! I watch her now and try to imagine what the future holds. God is so good! We will keep you all posted on the new things to come and please, if you have any questions, don't hesitate to ask. And pass on this information to other families!!! We will keep you posted!


Susan Stephens said...

Thanks for that update!! It's so exciting to say the least. I'll be praying for Lilly bug and look forward to more updates!

Cindy P. said...

TARA - So excited to read about Lilly's progress and these wonderful new discoveries!! You are a wonderful mother to seek out and attain the very best for Lilly - and by sharing perhaps you will be of help and encouragement to others. Much love to you all and looking forward to following Lilly's progress.