Thursday, July 22, 2010

Asa's story

HEre is a video I made of Asa's story. Enjoy.

Sunday, May 2, 2010

Im ready to talk now....

As you can see, I have not written for the past 6 months. To be honest, I have not felt the need because I truly did not know what else to write about. I thought, well, I got his diagnosis, now what???? And that is what I have been thinking these past 6 months...NOW WHAT???  So, on the funny side of things, I have spent my computer time on FARMVILLE!  I am not kidding!!!! It is something for me to just zone out and a place where I can think about nothing! It was truly addicting and still is. However, I had to do something because I found myself everytime I got on the computer searching about things for Mitochondria disease and it was not doing me any good. Some of the things I saw were kind of like Asa but most of the things just truly made me worry even more. With that being said, I have done pretty well about not getting on the Internet about that.

What else has been going on? ALOT!!!!!!!!  During these past 6 months, Asa has started walking. HE started back in November. He was 2 years and 3 months. It was the most amazing thing ever and still is. HE is still on the uncoordinated side, but he is WALKING and getting faster everyday. He is still not talking or saying any purposeful words, but he is making new sounds and making his mouth move with the sounds. He has begun to feed himself with a spoon. He is still not chewing very well, but we are still working on that. Also, Thank you God for his g-tube because without that, he would have been hospitalized for dehydration. There has been a couple of times this past winter when Asa got sick. I mean sick!!! We were able to get fluids to him because of his g-tube.   I continue to pray for the day when he says "Mama."

I am constantly asking myself the same question everyday though. I find myself asking "now what do I need to do...? This past weekend, April 24th to be exact, Andy and I went to a mini-symposium that was given by a new foundation called The Foundation of MItochondrial Medicine. Asa's doctor, Dr. Shoffner, put it together to give parents a more detail description of mitochondria disease, the disease's management, and also information about some clinical trail studies going on right now pertaining to Mitochondria diseases. I learned a great deal while we were there. As far as this disease and how it will affect Asa in the future is still unknown. What I mean is, with Asa's mitochondria disease, it is primarily cognitive. His primary organ that is involved is the brain which is why we have had such developmental delay and continue to struggle with those obstacles. Will Asa ever be age appropriate? Probably not....and yes, that is a hard thing to swallow....but I'll take him however God gives me to him. I am blessed to have him.

I have also learned these past 6 months, that the chance of this happening again is 50/50 if it is a boy and 25% if it is girl. So, I feel very sad about my hopes of having another child. There are times Im okay with that and then there are times when I get really sad, but I think that is pretty normal. I just could not imagine growing up in a household without my sister and I so wanted to give Asa a sibling. I just did not like them telling Andy and me that.

Overall, I say these past 6 months have been a blessing and a true learning experience for me. I find myself at times very happy and other times very lost. With that being said, Andy and I truly appreciate the prayers, sweet comments, and support from our friends and family. I hope to write more frequently on my blog. I am not sure if I ramble too much and if I ever make any sense. I will continue to do everything I can for Asa and for my family. I have to remember that it is ok for me to cry and that I dont have to pretend like I have it all together all the time. I have to remember to take care of myself too so that I can take care of my family. I have to remember to thank God for the blessings he has given me with Asa. I have to remember not to compare Asa with other children. I have to remember to stay hopeful, take one day at a time, and remember to find Asa's way through all of this....thanks for listening...