Celebrating Inchstones: Our loooong weekend!

Monday, July 5, 2010

Our loooong weekend!

We have had a great, long weekend. Barry has been off work for 4 days, practically unheard of! Today we took Cade and Gracie to see Toy Story 3 to celebrate the end of summer school. Sure, that sounds like a bribe but whatever! They went to summer school and I rewarded them! The movie was cute. Asa stayed home with Anna and napped the whole time we were gone! He was one tired puppy!! I did have thoughts of taking him with us but given is sensory issues I changed my mind. He has gotten so much better with that stuff and many times he enjoys things that used to make him so scared and then sick. Anyway, the movie was loud so I'm glad I didn't take him.

He is so up and down with the noise issues lately that it is any ones guess how he'll react to a situation these days. For instance, Barry took Asa home during church on Sunday because a little girl was kinda loud and Asa was freaking out. She wasn't overly loud and it didn't bother the other little girl in there but Asa was upset! Barry tried taking Asa to another room but that didn't work so they came home. Makes me wonder about how school will go!

But then the fireworks! Wow, the fireworks!! We had ear covers for Asa to wear when we shot fireworks but I still thought he'd end up going home. I was helping get the next fireworks ready so Barry was holding Asa. He said at first Asa resisted the ear covers but then after they left them off for a second Asa realized how loud it was and didn't bother them again. He sat happily in Barry's lap while we shot fireworks and he laughed! Yes, my boy who startles and cries when someone gets ice in a glass, when I sneeze, when Cade shoots a Nerf gun...he LAUGHED at the fireworks! All the fireworks! Each time they went up, he giggled!!!

Man, if had known that would be his reaction, I could have saved myself some embarrassment! I went to the fireworks store on Saturday and asked for fireworks that didn't make too much noise! The guy just looks at me and then another kid comes over. I tell him I'm looking for quiet fireworks. He sent me to the sparklers! What I meant was that I wanted the ones that go high and pop with pretty colors and falling sparks. Not fireworks that have lots of noise but very little pretty. Is that so hard?! I skipped the ones that said "whistler" or "screamer". Asa really, really liked my selections. And the other kids did too, mostly. Although it was a tough crowd and we had some boos! HA! We all really had a great time!!

And Asa ended the night with his first ever sleep over!!! My mom has stayed here with him several times but this time he stayed at her house while the rest of us camped out. She said he did great and she looks forward to making this a weekly ritual! LOL, kidding!! She has some of the kids nearly every weekend but this was Asa's first stay. I'm so glad he slept well and he took 2 cups of Pedisure for her, one before bed and one first thing in the morning! I've been having a hard time with the first morning cup and have resorted to the tube more often than not for this feeding! WTG, Asa!!!

So our July is off and running and won't be slowing down anytime soon! On Wednesday, a bunch of us are going to see TobyMac and Chris Tomlin in concert. Friday and Saturday, I'm attending a women's conference. It is local so I won't be going away overnight (that has it's pluses and minuses!!). The next week is our VBS. The next Friday is Asa's 24 hour EEG and Saturday is a family get together. The last Friday of the month Asa will graduate from Early Intervention with a little ceremony. That Saturday is the Mito meeting at Vandy. And then school starts back on Monday!!! I think that just leaves a few hours for sleeping the whole month! I guess it is good to stay busy, right!

1 comment:

Clara-Leigh said...: What time is the concert and where can I meet you.....SOOOOOOO excited for you!! And the conference, that a blast!! I am so glad to see you doing these kinds of things AND having wonderful family support...HUGE BLESSINGS!!

Also delighted to see your noise boy, like Garrett, is finally not freaking out over fireworks!! Isn't that encouraging?!?!

Thank you for the post on my blog. I, too, hope it is not the Carnitor. I have been one hour late on our schedule since being in MT, so fixing that means he will get everything at 4 instead of 5, so that may be a huge help. I'll keep your method of weaning slowly onto the 4:00 dose in mind too if this keeps happening. I think it might be night terrors....the girls never had those, scary to me either way!!!!

Off to get Oscar from the airport! He's been away in Alask for two and a half weeks!!! We now have three weeks with him here and then all fly home together...YAY!!!

Hugs to beautiful Asa and you!!!!!
Blessings,
Clara-Leigh; July 7, 2010 at 9:58 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!