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...

7 comments:

  1. Carolyn, I am glad that you finally have a name to describe what is going on. You have every right to cry and Asa is such a sweet boy to have a Mom like you. He knows how much you love him and he will always have you by his side. He might not be like every other child but he is special in is own way. I love him just the way he is and God has given you the best gift of life. If you ever need me I hope you will not pick up the phone and call. I love You, Andy and Asa. Jennifer "Lawson" Musser.

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  2. Kathy ArmstrongMay 2, 2010 at 5:42 PM

    Asa is a very lucky little boy. Please know I am here, and if you need a shoulder, mine is available. Love you. Kathy

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  3. Just wanted to say hello. I am a fellow Mito mom and found your blog googling for more information. My daughter also sees Dr. S in Atlanta.

    Hugs

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  4. I just found your blog while googling Shoftner's group. I can't believe it but my son is named Asa and he has mito! Really what are the chances!!! My Asa is 2 3/4 right now. I track the 3/4 because he'll soon age out of early intervention and start school! Yikes!! I'd love to chat more about the boys, they seem to have a lot in common. My Asa doesn't talk and still doesn't walk. He has a G-tube but has learned to drink from a straw cup so we don't have to use the tube much anymore. We've had a few illnesses though where we are so thankful we can keep him hydrated!

    And just so you don't think I'm a crazy, name stealing person here is my blog: http://celebratinginchstones.blogspot.com

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  5. Carolyn,

    It's been years since I've seen you but I found your blog through Facebook. You sound like you are handling this better than anyone could. And that bubbly, wonderful, strong personality I remember so fondly is obviously still there.

    You, your husband and sweet Asa are in my thoughts and prayers.

    xo
    Anna B (Breazeale) Webb

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  6. You are an awesome mama. I'm sorry I don't have a way to e-mail you privately. I know of the struggles you have with your son - we have had them with our daughter.

    One thing that has bizarrely helped (she is currently an undiagnosed but suspected mito kid - we are about to do some of the testing) is a really insane diet. I have to cook everything from scratch but the first week she was on it she started talking. If you have time and like to read, check out "Gut and Psychology Syndrome." Although this is book isn't about mito specifically you may find it worth a one month trial to see if it helps him with speech in particular. Our daughter's muscle tone has improved and she is now speaking in paragraphs. It has been incredible. She still has less than great muscle tone and slow reflexes, but something is better than nothing and it's only been 4 months on the healing diet.

    It's a lot of work, but it looks like you've *been* doing a lot of work already and dedicated moms will do anything, no?

    - Kati (KatiHornung*at*verizon_dot_net)

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  7. Hey Mrs Dow
    It is Nichole Ruttschaw. Travis Ruttschaw's mother.. i hope u remember us. I was just sitting here thinking about you and Asa and wondering how all is going with you. Please keep in touch with me and let me know how you 2 are doing.... love yall

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