Celebrating Inchstones: September already?

Saturday, September 3, 2011

September already?

I can't believe its September already! Don't get me wrong, I'm ready for fall! The cooler temps, changing and falling leaves, pumpkin muffins and especially the return of my goodies and long sleeves! I've been touching them every time I open my closet for several weeks! I just love autumn!!
What I don't love is the way this year is flying by! Sure there are days that I'm just ready to close the books on the day but for the most part wish I could just hit the slow button! I kinda feel like things are easy right now. Anna isn't on the go to much. It won't be long until she has a drivers licence and a part time job and I'll have to vie for her attention. Cade and Gracie get along pretty well at the moment. They have such creative ideas and plans! Cade has really been very easy to get along with and surprisingly obedient. For a while he'd argue with us about anything we asked him to do. Lately though he has not only not argued but done what we've asked as soon as we ask! You can see how I'd love to hold him in this stage! Gracie is still in between the stage of innocence and growing up. She can still make the sassiest comments but in such an innocent way that you can't punish her because surely she didn't realize who grown that sounded! Right?! She was pretending to text her "boyfriend" the other day. She texted that he should like Gracie better because Jesuce (Jessica) couldn't beat her at tetherball! Where does she get this stuff?
And Asa. Lets just face it, the older and bigger he gets, the harder he is to deal with. He is make slow progress but the older he gets the more obvious his delays become. I've felt those old twinges of jealousy as I've seen typical kids his age. Don't get me wrong, we are by blessed that he has the skills he does and I don't know why these feelings creep up when I least expect them. The older and bigger he gets also,makes it physically harder to handle him. Picking him up out of bed, out of the tub, out of the highchair, lifting him into the van then out of the van, then there's the wheelchair. And you don't even want to know about the diaper changes! I'm considering getting a potty chair just to see what happens. I keep looking at them but I honestly have such low expectations that I feel buying one would be like flushing money down the toilet....pun intended. Maybe for his bday next month.

I hate to complain about Asa because he is really doing pretty good right now. Most days he is eating 3 tiny meals. Real meals like a pop tart for breakfast then a slice of deli meat and a couple of potato straws for lunch, followed by several bites of whatever we have for supper. He usually has 3 8oz cups of soy or rice milk and a juice box each day. The last few days I've substituted Elecare for the milk. I don't mix it to 30cals/oz though because that seems so thick and heavy that he only wants to drink not eat. I got an email from his GI on Thursday though. Well, technically, she sent it a month ago but I just found it. The dietician looked at the feeding journal I sent in and Asa needs more calories a day, like 400 more calories a day. That may not seem like a lot for me but when he is still getting sick on what he has now its hard to seeing adding more food or formula. I'm not sure if they figured in that he is really, really seditary. Does 100cals/kg or 1350cals for a 30lber sound familiar to anyone? And then we are back to the more he gains, the more I strain trying to care for him. He seems thinner but not FTT again.

Anyway, enough of my rambling! College football is on and I'm bored but I won't make y'all read anymore of my crazy thoughts though. Maybe I'll browse YouTube since I have REAL internet now!

2 comments:

Debbie said...: I understand how you feel....I go through cycles of being "ok" and also feeling the angst and jealous spark of the "typical" world....and don't get me started about how much my back aches from lifting a 35lber.....tough stuff!
Your not alone in thought and feeling!; September 4, 2011 at 7:43 PM
marie clare said...: Ryan is 33lbs but very tall. His nutritionist wants him on 1380 - 1550 / day to maintain. Will Asa eat breakfast essentials in his milk? It adds some calories but not bulk.; September 5, 2011 at 6:17 PM

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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!