Celebrating Inchstones: A busy week!

Sunday, August 29, 2010

A busy week!

Many times something happens during our week and I can't wait to post it to the blog. Then when I finally get around to it, I've forgotten what was so funny or important! I may have to just force myself to post every other day so that I don't skip anything. That means though that many days will just be boring!

I did finally get the flyers for the Chick-fil-A night in my hands. Asa and I went in on Friday and ate lunch. Last week I took him inside and it was a near disaster!! It was my own fault though! I knew I couldn't carry him in so I got out the umbrella stroller. Once inside I should have put him in a highchair but I didn't see one so I plopped him down with me in the booth. Ha! He gained more mobility in that 15 minutes than in the last 15 months combined!!! This time I asked if they had highchairs and one was brought to me. Along with my food and the flyers! Asa sat much better this time! Here I was so proud that he was able to sit alone that I forgot the down sides!!

Asa tried out a new toy at PT this week. It is a mobile stander. It is a stander with big wheels so he can push himself around. He took right to it at therapy. I was so tickled. This will strengthen his upper body. We brought it home but he hasn't been so thrilled with it. I'm not sure what the difference is. I hope he will take to it so he can have another way to be mobile.

Even with the mobile stander, the gait trainer and the adaptive stroller I still feel like we are missing something. I want a way for Asa to be adventurous and explore when we are out and about. I realize this is something that I want and not something Asa really wants too badly! He is usually happy to be carried, pushed or held. And I know that if he has choices it'll be like the Chick-fil-A thing, him being busy and me trying to corral. Still that is how it is supposed to be. None of this equipment we have is very transportable. I guess he just isn't ready to be on his own yet!

Asa's eating has been up and down, mostly down. He was gaggy in feeding on Tuesday but then had a record day on Wednesday. I was so excited. Everyday since then has been downhill. I even used the tube today. First time in weeks! He is refusing the Pedisure, yogurt, pudding, oatmeal, everything! He asks for food when we eat (by pointing and squealing) but he won't really eat. I'll get it all set up and then he turns his head. Frustrating!! But, tomorrow is a new day!

We have a new addition here. We got a kitten from a neighbor. I'm soooooo allergic to cats and this was going to be an outside cat. It has been outside since birth. And that may have worked here if it wasn't for the stupid neighbor dog that kills cats!!!! We tried have cats 2 times before but this stupid dog killed both of them. Once I even witnessed the dog snatch the cat and run into the woods but could do nothing. This morning we woke up at 4am to the sound of a yelping, small dog and the growl of the big, old, vicious dog. Sure enough the dog has the kitten in the woods right next to the kids tree house. I have the flashlight and Barry has the gun!! He finally dropped the cat and ran. He was too old to get out of the gully with the cat! It looked bad but the cat is playing again tonight so we are hopeful he is fine. Makes me so mad that the kids can't have a cat at their own house because of this stupid dog! So now the cat is inside and I am testing allergy meds! Benedryl knocks me out. Zyrtec seemed OK. I had the liquid for kids and I finally stopped sneezing and itching. We'll see what this week brings but I'm thinking the dog may have pushed me to my limits and the cat may be outside and the dog goes bye bye!

The kids are loving the kitten and have to assign days for it to be their pet. If he is inside I wonder if the assigned week will also be the assigned cleanup week! He has 6 toes on both front paws and was named "Toesy". The kids named him Toby Toes! Mostly he is called "cat" right now though!

Ok the benedryl kicked in I'm just gonna hit "publish" and not even proof read! Have fun with the red pens!!!

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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!