Celebrating Inchstones: The Day After

Sunday, December 26, 2010

The Day After

I think the true judge of Christmas is the day after. There should be no "I'm bored" but no toys discarded in the corner either! That is the day after we've had today! I'm glad it was Sunday and Barry was off work again. We've had a great long 4 days of family time. We are blessed that our families live very close so we haven't had the added hustle and bustle of travel and packing. For that I'm very thankful!!! This has been one of the most relaxed holidays ever!!

The kids each got one present that they really, really wanted......and that is it! Well they did get one little toy, pjs and an ornament. They got some fun stuff and gift cards from the rest of our family but we didn't end up with so much stuff that they couldn't play with it all. My mom gets sick when we have so much food left over after a holiday, that's how I feel about gifts. Last year we tried to spend less but get lots of stuff. I thought the kids would be disappointed if they didn't have a ton of boxes under the tree. Let's just say I put most of that stuff in a garage sale by spring! Not this year! Our tree looked pretty bare and I didn't even take a picture of it like I usually do, just in case my plan backfired! I feel so blessed that we could get them all one surprise they dreamed about. I'm proud of myself for not picking up everything I saw on the shelves!! Gracie did dream of Zhu-Zhu pets and she got one from us and one from my mom. I figure even if she tires of it next week Asa or the cat will like them!

Anna got a laptop. It is hard to surprise a teenager but I think we may have pulled it off! Maybe!! Since we have dial up she doesn't have internet in her room and that makes me happy!

Cade got a bigger 4 wheeler. Gracie got his hand-me-down one with great excitement! They have been riding several times even though it is COLD!!!

Gracie got an iPod touch. She wanted a DSi even though she has a DS and never plays it. I thought she'd be able to grow into an iPod and we won't have to worry about losing games. She loves music and has played music as much as games! I was worried she'd see a tiny iPod and not realize the money, just the size but she hasn't complained one time!!!

Asa got a little power wheels car! I was originally thinking of a recliner but then I sat him in a power wheels at Toys R Us and he loved it!! He went right for the go button!!! It has a tall parent handle and we've used it to go round and round in the house!!! We thought this might be a mini trial for a power chair. Turns out Asa likes to run over stuff so a power chair may be far off!! He did love the freedom though!

See, they all got one big, amazing gift and are VERY happy!!! I love it! I just hope they realize this may not happen every year!!!

I'm ready to enjoy this next week! The kids are out of school, we have no appointments and nowhere to be! We will have to spend one day giving everyone a chance to spend those giftcards! Gracie is talking about getting new bedding for her bed! We reorganized the upstairs room today and tomorrow will be Asa's room! I think I have a plan for Asa's bed situation that doesn't involve buying anything new!

Asa and I are both feeling better! He slept all night the last 2 nights! And yes, I realize I just shot myself in the foot by saying that! I spent all day Christmas sneezing my head off and feeling like I'd been hit by a truck! Today my head was sooo stopped up but after alot of meds I finally feel "normal" again! I think Asa's meds made him a mellow fellow yesterday! He handled way more stimulation that I thought he'd be able to! I wish I knew what it was so I could ask for more!!! Then again maybe it wasn't the meds at all but my Christmas prayers being answered!!!

2 comments:

Clara-Leigh said...: Kim,
I am so happy that your Christmas was so nice!!!! Way to go!!!! God is good!!
Thank you for the response to my blog today!!! It helps so much to hear from others who understand.
I can so relate to your feelings about having one adult and one kid always missing. It's like we are a divorced family or something...sharing time together but in fragments. Several times people have asked where Garrett is and I will say,"With his Daddy, I mean my husband. I mean his father who is my husband. I mean my husband who is also Garrett AND my girls' father." COMPLICATED yet so simple!!! Restaurant situations have inproved as of late. Car riding worse. Inside behavior worse. Outdoor play better. Eating worse. Pooping better.
What a mixed bag of tricks we have!!
Thank you again for sharing!!!
Great big hug to you and Barry and Asa. We will be in Houston to see Dr. K Jan. 25. Any chance you will be there??; December 27, 2010 at 11:46 AM
Anonymous said...: Just wanted to stop in and wish you all a Happy New Year! I have trouble leaving messages on the blog but am giving it another try! Even though I havent been around in a while, little Asa has been in my prayers!

Hannah Clark
www.caringbridge.org/visit/clarkkids; January 1, 2011 at 12:38 PM

Post a Comment

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!