Celebrating Inchstones: Another first for Asa.....

Friday, March 4, 2011

Another first for Asa.....

Another first! Today I had some errands to run after I picked Asa up from school. I realized that I forgot to take an extra can of Pedisure with us! Now, of course I could have bought a 6 pack of Pedisure for $10 but we have cases and cases at home and I kept thinking of all the other stuff I could do with $10. So I made a decision.....I would give Asa real food instead of a Pedisure cup!

I know that he eats lots of real foods but he has never had to rely on real food. I'm happy if he tastes and plays with real food. But I don't think he takes in enough calories from just food. But today we were gonna see. After school we went by McDonald's and I ordered food just for Asa, well I got a coffee for myself! I ordered Asa a yogurt and a cheeseburger. Asa gobbled the yogurt up and ate the cheese and bun from the burger. He can't chew too well so I only gave him a taste of the burger (I hear you cheering that I didn't give him the meat, Christine!). I thought it was pretty funny that he is nearly 3 1/2 and we've never ordered food for him at a restaurant!! After the grocery store he had an applesauce pouch so I don't think I had to worry about the calories! He never did eat his 3rd cup of Pedisure today. When we got home he got sick so he went to bed at 7pm after I tubed his meds. I just hope he doesn't wake up at 5am tomorrow!!

I've had to keep a feeding journal this week for the GI at Vandy. The first day I was tickled that he ate so much real food. It was a Monday and a day we don't have any appts or plans. On Tuesday he did ok but he couldn't eat in the morning. By Wednesday he was so gaggy in the morning that he couldn't even eat his breakfast Pedisure until after 10am. He ususally has this at 8am. He continued this gagging the next 2 days too. I wonder if he is having sinus drainage issues and is choked up in the morning. He just gags and gags and covers his mouth. I hate to see him stuggle with whatever it is but in the past he hasn't had the ability to gag without puking so this is progress believe it or not.

On a terriblely sad note, the mito community lost another little fighter yesterday. I've mentioned Cooper Knight on here before, asking prayer for him when he had a transplant last year. Sadly, the transplant didn't go as well as everyone hoped but Cooper held his own and he was back home in time for the holidays. In January, he went on his Make a Wish trip to Disney with his family. In February, he had another surgery and just didn't bounce back at all. He got very, very sick but would seem to be ralling back before he was knocked down again. Each time he kept fighting and his family kept fighting. Last week his family and doctors decided that Cooper's little body was too weak to keep recovering and it would play out long before his strong will and fight. Last week Cooper came home from the hospital to be with his family for as long as he could. According to his mom's blog and FB, they enjoyed every second they had together. He even managed a stroll around the neighborhood in his Power Wheels and have wars with his brothers using marshmellow guns! And even though his body couldn't fight anymore, he continued to fight. Sadly, he could no longer fight and last night he passed on to the loving arms of Jesus.

I know it is awful to think of kids dying and many of you may have no idea who Cooper is (or any of the other kids I've mentioned) but they have an amazing story to tell. Even as little kids they have more fight and love and life in them than many grown people I know. How can such little people teach us adults so much?! And the parents, siblings, cousins, grandparents and friends that love these little mito warriors are warriors themselves. Where many of us would curl up into a ball, these families share the struggles and joys of their little ones. They have faith when I'm not sure I could. They remain hopeful when everyone else has given up hope. These are the type of people I've become "friends" with over the last 3 years. I'm so proud to have gotten to know all these families and my heart breaks when I hear of another loss in our "community". Heaven has too many of our mito kids!

I guess that's why I share our story and their stories. To raise awareness of a fairly unknown disease that is taking away amazing kids. I wish we could cure mito but that seems unlikely to happen tomorrow. What will happen tomorrow though, is that mito will be attacking kids, harming them...many of them permently...and yet most people have never heard of mito. It is a silent killer! If it is going to steal away these brave souls then it should have a name and everyone, EVERYONE, should hate it! Not just a small community! I could go on and tell you all the reasons mito could affect your family. Things like diabetes, Alzheimers, Parkinsons and some cancers. And all these and more are true but tonight the reason to hate mito is for Cooper Knight......his mom Sarah, dad Kevin, big sister Caroline and big brothers Oliver and Adam! That's why I hate mito tonight!

Cooper's service is Tuesday at 10am. His favorite color is orange. I'll be wearing orange and thinking of Cooper even from miles, hours and states away!

1 comment:

Mighty Mito Mom said...: Thanks for writing this. You made me cry. :); March 8, 2011 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!