Celebrating Inchstones: Randomness

Monday, March 7, 2011

Randomness

We are getting ready for the Mito-What? 5K! It turns out that running outside is much harder than running on the treadmill! And we live near hills! Who knew!! Anna and I tried to do 3.1 miles today but we got a later start and had to get back before Cade and Gracie got off the bus. We did 2.94 miles in......43 minutes! We are slow! I guess we still have 2 weeks to get faster. If I'm that slow I'm just doing the 1 mile! At last check there was 270 people registered but there is still room for you if you want to come!! Or sign up as a runner and just be a virtual runner. The money goes to the UMDF no matter if you show up or not!!!

And I got all the sponsors I needed to be a Mito Hero!! I'm working on a little something for my sweet sponsors but well, I'm slow and easily distracted! Still, my goal is to be finished before the race! In the meantime, thank you all so much!

This time in 2 weeks, we'll be Houston! I finally got the EMU recording and report from Asa's EEG that was done in July 2010. I wanted Dr. K to see a whole "episode" from start to finish. You can clearly see that Asa is upset and it is noted in the report but I wish it had sound and a better view of Asa's face. Oh, well.

We also got a letter in the mail yesterday saying that one of the Drs. we wanted to see is going to be out of town. This was the neuro who specializes in autism. I'm really not sure what she was supposed help us do but now we won't see her. I did get some names of psychologist here who may be helpful. I'm just really confused if we need to go this route. Maybe he is just a high maintance kid and spoiled rotten. Or maybe he does have some behavior and mental issues that need to be addressed. I flip from one theory to the other hourly!

Speaking of his behavior.....this morning I spent the day picking him up, putting him down, letting him walk around holding my hands, putting him in chairs, taking him out of chairs, round and round, over and over! I finally gave up and just stopped. Can you guess what happened next?! Yep, screaming and screaming! I can tell he is frustrated that he can't get around on his own. I'm sure that's not all the problem but it is a big part. I finally put the seat back in his gait trainer and he was able to walk around but then sit down when he got tired. This was better. I also brought in a little car and he rode around on it for a minute. The whole time I was cooking supper though, he scooted around me trying his best to sit on my feet! It is soooo good to be soooo loved!

Oh and also while I was cooking supper and Asa was trying to sit on my feet and climb my legs, the insurance company called. They wanted to remind me that they cover well child visits and their records indicated that Asa was past due for a check up! HAHAHAHA! The guy was nice and I let him do his speech, then I assured him Asa was up to date on his check ups and then some! He told me I could go to their website if I needed help with any other issues we were having! Oh, if only it was that simple!!! He did remind me that I need to follow up with our case worker to be sure things are in place for the Houston trip.

1 comment:

Anonymous said...: I spy another "joy blessing" from our great God! Kim, your delight and positive spirit are SO refreshing! Keep those "Mama" hopes, dreams, and prayers going! I feel God is continuing to bless [even when the days are hard] because you are giving all credit to each inchstone to HIM! We continue to pray, too! Love you all, Mrs. Margaret; March 10, 2011 at 10:21 AM

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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!