Celebrating Inchstones: Rain, rain go away!

Saturday, May 1, 2010

Rain, rain go away!

We have had some major storms in West TN so far this weekend! It started with a 3am tornado warning. When our town was mentioned we loaded the kids up and drove down the road to my parents. We hunkered down in their basement with my parents, my 3 nephews who were spending the night and for a little, while my cousin, his wife and their little overnight guest. That is right, 13 of us in the basement for what seemed like an eternity. Funny thing that being up in the middle of the night with storms brewing, brings out the hyper in kiddos! I think Barry and my daddy stayed up above ready to wrestle the tornado than the kids in the basement!

Thankfully, we didn't have a tornado but we have had a ton of rain. I've heard it was 12 inches of rain! Barry's parents house nearly flooded when the culvert in front of the house backed up. They evacuated as the water got to the bottom of the truck and the driveway washed out. At some point the culvert washed out and the water receded from their house. There are tons of roads out and many churches canceled services for tomorrow. I even saw where one school will be out on Monday! I'm not telling the kids that though. No need to get their hopes up!

Asa did well getting up and out in the wee hours of the morning. He ended up sleeping until 1pm though. He has spent a few days this week doing nothing but sleeping. We ran out of the CoQ10 and I thought I'd hold off on ordering it to see if it was really helping him. I think after a week or so without it I can say it is worth the money!!

Asa didn't get sick again after last night in the car. I was really afraid we'd being looking at a whole night of sickness. Thankfully not! He did get sick again tonight but there was a just cause for that. I bought these chocolate soy drink boxes. I didn't really think he'd drink it but he drank nearly all 8oz. I should have stopped him since he has had trouble with all chocolate drinks we give him, even the chocolate version of the elemental formula he was on. Sure enough, before bed he got so sick. Again, the drain bags didn't work and I had to wrangle the tube while he was puking. Thankfully Barry was holding him so it was our 4 hands vs. Asa's one mouth. Shockingly enough, Asa won! He got him and Barry both covered! Then Asa got a nice long bath and was soooo happy! He loves water but the kitchen sink is getting a little small!

Asa has a new trick. I've been getting him to practice standing up by standing him on the changing table in front of me. At this height his head is at my shoulders and I can give him good support around his hips. I can also use the same position by sitting in the floor and having him standing in front of me. So yesterday Asa lays his head on my shoulder and proceeds to bite my shoulder! Well, it was more like a lick and maybe a gumming since he has such a weak bite. Since he isn't oral and doesn't mouth toys or food, I kinda felt privileged to be worthy of his bite! I acted all silly and said "oh, don't bite me" and other goofy things so that he'd laugh and try again. This was such a fun game to him and yet it was great therapy all in one! He was oral, he was standing and he was following my directions...or rather doing the exact opposite, which is totally age appropriate.

And just to prove it wasn't a one time game, we played again today only his bite was a bit stronger (he left a red mark!) and he was pulling my shirt away with his teeth! He thought this was great! He even bit Cade and Anna. Cade had to push it a little farther and got Asa to bite his ear and cheek but I discouraged that after I finished laughing at them! If no one was near him and we said "don't bite me" he'd open his mouth and stick his tongue out! I do realize we may have created a monster and he may bite anyone who picks him up so maybe I need to put a waring sign on him! I can't help it but I can't discourage his biting at this point. Now if becomes a Mike Tyson, we'll talk but right now just guard you shoulders!!

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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!