Celebrating Inchstones: Best birthday ever!

Tuesday, November 29, 2011

Best birthday ever!

My birthday was Sunday. I'm not much for big celebrations at all. I don't need tons of gifts either. At this point I consider it a great bday if I don't have to change diapers or cook! And I don't think I did either on Sunday! Moma fixed a yummy bday lunch of my favs. I got tons of Facebook wishes. My partner in crime with the kids at church, Yvette, got me a cookie cake and the kids all sang and gave me a card. Anna sent me a sweet bday text. Cade and Gracie said they would have but I won't give them a phone! And I took a 30 minute nap! That's what I call a rocking bday!

But Asa gave my a wonderful gift too! While we were at Moma's for lunch, Daddy got out a walker my grandmother has used. I looked up and here comes Asa just walking away with it! Daddy was just supporting the walker so it wouldn't roll away since Asa had poor control! When he uses a child's walker he will barely hold the handles without us holding on too. He will do it with us but he is usually very MAD about it. And with the gait trainer he wants the chest prompt to lean against. He usually demands all the support we will give him! Well, just check out the video:

I can't believe how strong he has gotten! One night he was sitting and playing at the bottom of the stairs. Once I glanced his way and didn't see him. Then I saw him on the first step! I started yell and calling everyone around. I could hardly believe that a kid who can't stand or crawl on his own could climb a step. As I shouted and celebrated Gracie came to see what the fuss was about. When she saw me losing my mind she said "oh, yeah, I put him up there earlier"!! Hahaha, they really got me!

And lastly I just have to share a blog post from my friend, Clara-Leigh, with you! I just loved it so much! I hope you do too!

http://mitolifewindow.blogspot.com/2011/11/priceless.html

1 comment:

Clara-Leigh said...: KIM, HOW WONDERFUL!!!!!!!!
And happy birthday to you!! Mine is today, so let's have some cyber-cake together!!! And yes, I am now 37......big deal!! It's not the years that count anyway, RIGHT??? It's the love and fun in the years!! This accomplishment of Asa's is TREMENDOUS!! I had NO IDEA he could do that!!!! He was obviously so stinkin' proud!!! To heck with those expensive kids' walkers and chairs....get out granny's drug store walker and let it roll!! I am just giddy inside reading this and watching him go!!!!!!!!
Thank you for your sweet comment on my last blog. At least this little boy we have keeps us laughing!!! I appreciate you sharing it as well!! Hope you have a great rest of the week!! Much love and a big (((((BIRTHDAY HUG)))) !!!!; November 30, 2011 at 1:17 PM

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!