Wednesday, April 21, 2010

One more birthday and sleep deprivation!

First thing first....my Gracie is 7 today! I can't believe it! She told me today, "Moma, your kids are all growing up"! So true. She may be growing up but she is still holding onto some of the sweet little girl stuff. She kept asking for the new Buzz Lightyear with the wings for her birthday. I'm sure she'll outgrow him before her next birthday and she'll wish she'd ask for highheels or makeup! Gracie has loved, LOVED, Toy Story since she was tiny! She has a whole collection of Woodys, Buzzes, a Jessie and a Bullseye. Still, just to keep the memories, I got her the new Buzz. This is the last of the easy years when they want one of each from the toy aisles! It gets harder to buy for them as they get older. But for tonight, I tucked her in bed with a plastic Buzz Lightyear with the flip out wings!




Gracie is the closest thing we have to a nurse or therapist here. She isn't fazed by any of the stuff that goes on with Asa. Or any injury, to anyone, for that matter. She is very interested in the tube changes and diaper messes. She pays attention when she goes to therapy with us or hears us working and she'll do the therapy with Asa on her own. She has gotten him to show off skills that we have worked and worked on!! With Anna's muscle and Gracie's gut, those two wouldn't have a problem with Asa on their own. Gracie is like no other, I promise you that!

She has confidence like I've never seen. She'll say she is the best basketball player, the best softball player, even the best soccer player. I reminded her that she'd never played soccer and she said it didn't matter, once she plays she'll be the best. Confidence! She likes playing PollyPockets and Brats but also loves Power Rangers and army men. She loves her bike and is the best golf cart driver around....not just her words! She was tickled to get tissues, toothbrushes, toothpaste and bandaids as presents. She also happens to have the messiest room in the house and that is saying alot! She also saves her money! Cade and Anna will pool their money to buy a game but Gracie keeps hers. She is splurging if she buys a pack of gum! I love that girl bunches!!




So you remember Sara that took those wonderful photographs of Asa last fall? She is also a talented baker! Oh, and she sews. And I'm sure there are tons more craftiness that I don't know about! I've seen a few of her beautiful cakes and have eaten some great cookies she made. A few weeks ago she made the cutest cookies for a bake sale at the therapy center. So I bought 4 cookies and when Asa wouldn't eat his, I had it. YUMMY!! I liked a baseball she'd made and thought maybe I could make softballs for Gracie's birthday snack at school. Sara kindly gave me the recipe and I actually made cookies and icing!! Seriously, from scratch, like with flour and sugar and butter! Turns out this recipe was so easy! Of course, I only made circles for softballs. I'm sure it all isn't so easy when you have a more complicated design but this was fun! I don't think mine are as good as Sara's but they are tasty. And I kinda obsessed about the exact color of the softball (not exactly yellow but not too much green!). Turns out you can't find stickers or ribbon or anything with softballs on it! Go figure! Anyway, here are my, I mean Gracie's, cookies! The recipe made like 40 cookies. She took some to school and some to church tonight. Oh and one of my pans stuck so really it made closer to 50.







Today was also Asa's ABR hearing test. Dr. K in Houston wanted us to get his hearing tested with a BAERS test. We tried to do it when he was sedated for her recommended MRI/MRS but it didn't work out. So after some searching, I found out we could have a ABR done here in Jackson. He just needed to be sleep deprived at 8am this morning. Then they'd hook up 4 electrodes and measure how well his ears send the signal to his brain. Did you get the part about being sleep deprived at 8am!!!

So we got up at 4:30 this morning. Asa is not a good napper. He likes to be in his bed, in his room, with his music. He is kinda picky like that! So I'd called the ped to got a prescription just to be sure he'd be asleep and not be bothered by the poking and prodding. I got him up early, fed him and gave him the meds when we left. We get to the appt and he was playing and kinda perky! Not acting sleepy at all. YIKES!! But once we got in the dark room and I got him comfy and pulled out Barry's bedtime trick of rubbing his head a certain way, he quickly drifted off. And he stayed asleep. Even through the placing of electrodes, inserting the earplugs and wire, and the testing! He slept perfectly!! And he heard perfectly!!! YAY!! I was a little concerned about this test since he has such a startle but his ears and nerves work. Not sure what happens once the sound hits the brain but the hearing part is A OK!! So another worry put on the back burner for another year or two!! Oh, and the dr. that performed the test knows a little girl with mito! How crazy is that!!

Last night, Anna, Gracie, Asa and I went to a support group meeting that was organized by Asa's EI teacher and her student!! The focus was tube feedings and feeding issues! Asa's OT and his substitute SLP were there. The other speaker was a lady who'd fostered SN infants and kids. She was a wealth of knowledge about tube feedings. And I got to meet and talk to another mother. Her DD doesn't have a tube but has feeding issues and delays. I could have talked for hours but my girls were ready to go! Anna told me on the way to the meeting that I could start a conversation with a tree! HA!! The kids were all so good too! Even Asa. He doesn't usually do well at night. In fact, while typing this he got sick and I had to stop and drain/vent him. He went to sleep and I just put him to bed. This is how our evenings usually go! But last night they were all so good. I've been wanting to meet other parent locally who have SN kids. Now just to work out a time for a chat!

While we were at the meeting, Barry and Cade were at Cade's ball game. They won in extra innings! Sounds like it was an awesome game! Gracie had a game on Monday. They didn't win so much...it was over quickly! Cade has another game tomorrow and Gracie on Friday! I'm telling you this week is crazy busy!



I found Asa a mug with a straw! He loved it! Crazy how much he likes a straw cup!! I love it!! I got this one at Target but I saw another one I liked at Penny's! Can you really ever have too many straw cups?! Kidding, the answer is YES, so I left the one at Penny's and it was 50% off! Aren't you proud of me for showing some restraint even when there is a new skill involved! Funny thing about Penny's. They had a little area set up with the baby clothes. It had summer stuff and a pink Adirondack chair. I got Asa out of his chair and let him try out the pink one! He liked it!! We sat there for 20 mins at least. He was so happy and just chilling out so I let him relax! Too bad it was pink!




Asa's OT tried out a new swing for Asa. He wasn't so impressed at first but we did get several grins from him. I'd just been looking a hammocks at Gander Mountain last week. I guess great minds think alike! HA!

1 comment:

Cheryl and Bricen said...

Happy Birthday Gracie...love the cookies, how cute.