Celebrating Inchstones: Super busy weekend!!!

Sunday, September 19, 2010

Super busy weekend!!!

This weekend has been jam packed and my head is still spinning!

We started out Saturday morning with a benefit run in Jackson. It was the Racing So They Can Ride benefiting the hippotherapy program. Asa doesn't use hippotherapy but I've heard nothing but good things about it and it whole program is paid for by scholarships. This is welcome news to any parents ears!! I hope one day Asa will try this out. I filled out the paperwork this spring but never sent it in. With his sensory issues and fear of animals, I just wasn't sure this was the right time for him to try it. Maybe next spring!

This race is in memory of a special little boy who also had mito. To have 2 kids in the county diagnosed is amazing to me. Unfortunately I never got to meet Caleb. He passed away in July '08 and Asa wasn't diagnosed until November '08. Caleb's parents have been so open and supportive of us and I this was the first "event" that our family did as a Team Asa.

Team Asa 2010-Christina (my longtime friend), Jakob (nephew), Kayla (Anna's BFF), Rayn (nephew), Anna, Barry, my Moma, Cade, Asa, Gracie.....I had the camera!

This year I decided I was gonna try to run the 1 mile event! They also offer a 5K run and a 15 mile bike ride!!! Believe me the 1 mile was a lofty goal for me!! I've been "training" on the treadmill for a few weeks but outside is so different. Turns out that I did make it the whole mile!!! Woooo Hoooo. Cade and my nephew Jakob can in 1st. I wasn't in the front but I did run it all!! My super amazing friend Christina was running too and that is the only reason I was able to make it! I kept thinking she'd want to take a break but nope, she just kept on going so I did too! Thanks Christina!!! Next up, the Mito What? 5K in Millington in March 2011!!!

After the race we had to run a few errands. Nothing like walking around Walmart on noodle legs!

We got home after lunch. Asa got pukey. Gracie and Cade went to my 3 nephews soccer games. Anna and her friend wanted me to take them to the fair. I should also point out that it was 95 degrees that afternoon!! For some crazy reason I agreed and I loaded Asa back up and off we went.

The big kids had a great time at the fair and Asa and I enjoyed the (indoor!!) 4H building. There was lots of displays and even a little pageant going on. I tried to get Asa to check out the ladies but he wouldn't listen! I did meet a special ed teacher who I loved chatting with. At first I was a little taken back when she started asking questions. Many times people seem surprised if I tell them his cool stroller is really a wheelchair or that his has issues. I was kinda surprised she recognized him as a special needs kid. Once I found out she was a teacher it all made more sense. I am noticing that we get more looks these days though. I'm sure that will happen more and more often as he gets older.

Seriously after the run, walking around while running errands, walking at the fair, all I wanted to do was crash last night!! I was in bed by 9:30pm! And it wasn't easy to get up at 6 this morning for church!

But we did get up and get going and had a great day in the Lord's house! I'm always so thankful for my church family. There are times when we can't go because someone is sick but thankfully Barry and I can switch out so neither of us misses too much. Many Sundays Asa is just a pill! He is difficult to get up and then he won't eat or he eats and gets sick. Seriously the devil will work if we let him!! Sometimes we do throw our hands up and Barry will stay home when it just gets too difficult. Still neither of us likes to miss too many Sundays!

After church we had lunch at my moms, as usual! The lady is a saint for cooking for all of us!!! Asa, in true form, got sick! After lunch Asa stayed with Barry and I went to get materials for a presentation board for the mito night at Chick-fil-A on Tuesday. Turns out the store no longer carries any of the stuff I had in mind! That's OK, I can work on it tomorrow night! You know, right before the event! I hate feeling behind!!

I also picked up some yard sale stuff from an awesome Facebook friend! Seriously, what did we do before FB?! Oh, yeah, laundry, dishes, cook and clean! Anyway, that brings me to the fact that I'm seriously behind on my yard sale prep. Well, not really behind but I don't see an opening to get it ready this week! I'm sure I'll think of something, maybe less FB!!! Oh, who am I kidding, no I won't!

Tomorrow is Asa's very first IEP. The meeting where we plan out the rest of his life, I mean his new school year! Again, I feel like I'm forgetting stuff. Will I make important points or will I only remember the silly stuff? Of course I'll take notes in with me. The same notes that I should be gathering right now instead of blogging.

Say a prayer for me in the morning!

1 comment:

Anonymous said...: Kim...you are my hero! I just don't know how you and Barry get it all done! I'm so proud of ya'll doing so well with the run/walk. Maybe if I can get my health straightened out I can participate in the one in March.

Take care ;o); September 20, 2010 at 11:32 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!