Celebrating Inchstones: Rambles

Thursday, April 22, 2010

Rambles

I feel pressure to have a topic and stick to it. I have a hard time not just rambling on about lots of stuff. Tonight I will ramble!

We had PT today. Asa was in a mood. And it wasn't a compliant one!! He screamed to avoid the mat work. Seriously, he won't even try to get into sitting. You'd think he'd hop up so he could scoot away but nope! He has the skills but it is hard to get them in order so he quits.

He also had speech/feeding. I told his SLP that I was gonna bring my grandmother with me next time. She seems convinced that if we just tried to get Asa to talk then he would. She misses the part where I talk to him all the time and sign and sound out words and babble on like a crazy person. Today was feeding day though, not speech, except funny thing about speech...it is alway on! But back to feeding, his therapist put a cheeto on the tray and some goldfish. And Asa picked up the cheeto!!! He seriously hates cheetos! But he touched it. He even tried to crunch it. You should have seen his face! Total disgust! He fed me a bite. Then while Ms. Jill was feeding him the pudding, she slipped in a bite of cheeto! He didn't gag at all. He didn't like it at all but he didn't gag! I realize 2 year olds eat cheetos all the time but this was a big step for my guy! So guess what I bought at the grocery store...cheetos!

After therapy, not so great. We went to Kohl's so I could look for some shoes, and I'm just now thinking I should have looked for the friendly, understanding worker I met last time I was there! Shucks, I'll have to go back! lol Anyway, while I was looking at shoes I noticed Asa was getting red. It wasn't hot in there so this perplexed me. Then I realized he was pooping! Not good, so I walked away to a secluded spot in the back. While trying to push out, his lunch was pushing up! His belly got sooo bloated the chair buckle was cutting in his stomach. Then he started gagging. I pulled out and hooked up a Farrell bag but it didn't work! Seriously! So we are in the back of the store with a tube and bag hooked up to his belly, I've got a syringe sucking the stomach contents to see if the bag will start working, he is sooo stinky, and since the bag isn't working he is puking and I've got out a puke cup and burp cloth! So are you ready for what happens next....

A worker stops at the next aisle and says, "ya'll doing alright today?"!!! I kid you not! Did she even glance this direction? Heck, who couldn't smell the poop or hear the crying and gagging! Maybe she was security sent to be sure I was hunkered down in the bedding section while shoving jewelery in the stroller! I paused and mentally flipped through the smart aleck, sarcastic comments I had in my mind and then opted for a "pretty good, and how bout you" while I came up for air from the toxic fumes!!! Fun times!

So once I got a handle on things we went to an empty dressing room and chilled for a while. Again, I walk into the dressing room with nothing in my arms, I'm sure security had their eye on me by now! I never got the bag to work so I drained his tummy into the puke cup, changed the diaper and just regrouped. Funny thing about this episode...he didn't crash and sleep like all the other times. He rested and was noodlely but he never went to sleep. Is this progress? Will we see an end to these episodes? One can hope!!

It is only fitting that when I get home this afternoon I find this blog post by someone. I'm not sure how I got to this blog. I don't "know" this person like most of the other blogs I follow. Still she has some good insights. Please read these because we have been hearing nearly all of this too often lately. The Rules of Special Needs Parenting! Kinda fitting for my day!

Tonight we went to Cade's ball game. Well, Asa didn't but I did. Funny how I refer to me as we cause it is rarely me and often we! But, I had a good time at the game. It was a good game, not as good as Tuesday I'm told but good. It was good to see the kids and families from last season. And I'm sure Asa had much more fun here than he'd had at the game!!

Tomorrow night Gracie is having a birthday sleepover. Her first sleepover! She invited 3 girls. That is enough, right! I spent the grocery budget on candy and drinks and pizzas! Well, and the cheetos that I'm sure the girls will eat cause Asa will reject them.

Oh, and I got my new shoes! I haven't had new shoes in 2 years....no puke, poop and meltdown will deter me! I did skip Old Navy though, I have my limits!! :)

1 comment:

Heidi said...: LOL, sorry. Only us "special" Moms are aloud to laugh, right? Maybe because this Kohls trip sounds too familiar. I was really expecting a HUGE ending, kwim?! BUT so glad you were able to put out the fire and still manage to slip your feet into some hip shoes in the end! Which reminds me on how many years Ive been wearing mine!

I really do believe what youre seeing is very likely progress with Asa. Some things just do get easier as they get older, yes even our kiddos.

I hope the sleepover was a success for Gracie, arent little girls so much fun :) Thanks for the update Kim, you deserve a BIG mommy award, handling everything as you always do. Your littleones are so blessed :)
Hugs an prayers--
Heidi & Jack.

{ps, good move on passing up Old Navy!}; April 23, 2010 at 6:08 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!