Some Good Days & Some Bad Days

At least I got Alayna to smile! Lately, it hasn't been happening very much. Her and I are especially crabby because sleep is a commodity that neither one of us have had much of.
She just ate her supper and now she is waiting patiently to get out. I make her sit there for awhile and hope she digests what she ate. Otherwise, she is know to get on the floor and spit it up. More than likely that is due to low muscle tone, especially in her trunk. She is still a very "burpy" girl.
See her pink cheeks? I'm not sure what that is all about. However, last night was a rough one. She went to sleep around 8:15 pm, but was awake by 12:50 am. I was out of bed 7 times between 1 am and 4 am! UGH. I long for her to sleep through the night again. I've forgotten what that is like because we've been battling this for over a month. I'm wondering if she isn't feeling good. Tis the season for viruses. I plan on giving her some Tylenol to help her sleep tonight and hope it goes better than last night. I'd appreciate any prayers from all of you.
This is what she does when she comes home in the afternoon after I pick her up. Boy wouldn't I like to nap too! She takes a nap in the swing. Or should I say, she tries to take a nap in the swing! As you can see in the photo, her toes now touch the bar and the floor and it slows her down and eventually makes her stop completely. That is when she starts to kick her legs in somewhat of a "pumping" motion to try and get going again. It's not working very well. I usually have to give her a big push. I hope that I can find a bigger swing for her for Christmas. She really enjoys swinging and it soothes her. I have to have one! It's as simple as that. Truly, swinging is the only thing right now that works. It relaxes her enough to calm herself down and it has been a life-saver from day one.

I wanted to post a picture of the stander again. I am looking forward to having this for Alayna. I want to get her standing so badly and give her the chance to see the world in an entirely different view.

This is a sample of what the Kid Kart will look like. To me, it's a stroller on steroids that provides therapy to Alayna as she sits in it! Isn't that cool. It will provide her support in all the areas that she needs it, make her sit up straight, hold her trunk in, allow her to be pulled up to a table, and give her a comfortable means of transportation. Also, if she isn't walking by the time she goes to pre-school, this will have attachable bus straps that will allow it to be tied down in a school bus. Right now Alayna really hates to be carried for a long period of time. Running into Walgreen's the other night and deciding to carry her was a bad idea! I'll never do that again. And I should've known this because it has happened before. She had a "melt-down" in the store, started to bite at her hand and just got extremely frustrated. I think carrying her requires her to use more muscles and strength and she just doesn't enjoy it. She gets tired easily and a short trip into the store is way too much for her right now. So, this Kid Kart will be a good thing for all of us.

Sleep Issues

I wish I could report some positives about Alayna's sleep patterns lately, but that isn't the case at all. She is awake at least once in the middle of the night or in the early, early morning. And this can last anywhere from 25 minutes to sometimes 3 hours. Her behavior during that time is usually fussiness, whining, sometimes more loud crying, and slamming her legs down on the mattress. And about 50% of the time her eyes are still shut. I think it is truly a case of waking up and not being able to find a way to soothe herself back to sleep. She will never take a bottle and trying to feed her one makes her more frustrated. Oh, I wish she could tell me what was wrong. I feel so helpless.

Alayna still loves the pacifier, but she can't put it back in her mouth on her own yet. Do you know how frustrating this has become for me? Oh, I can remember the days I would put 5 pacifiers in my other children's bed just so when they woke up at least one had to be in reach. And occasionally I was awoke by crying because all of them ended up under the bed on the floor! I was okay with that though. When the day comes that Alayna has mastered this, it is going to be front page, headline news in the newspaper! Okay, maybe just on the blog. As you know, lack of sleep effects your entire life. I pray for more every night.

ALAYNA DEKEYREL'S TRIVIA NIGHT - SATURDAY, NOVEMBER 15TH

Alayna's close family & friends are planning an exciting benefit to help establish the Alayna DeKeyrel Benefit Fund. Monies raised will be used for the purchase of the medical equipment explained above and future purchases and help defray the cost of continual physical, occupational, speech, and developmental therapies.

We invite you to come and join Alayna at the Teamster's Union Hall on Andalusia Road. Dinner begins at 5pm and consists of pulled pork sandwiches, sides, and desserts catered by Guy And A Grill ($8 per plate). Non-alcoholic beverages will be available for purchase, otherwise, it is BYOB. Trivia begins at 7pm and a silent auction will be going on throughout the night. 50/50 Tickets will also be sold. The food is guaranteed to be great and the trivia will be alot of fun!

The benefit committee's goal is to pack the place! If you'd like more information, feel free to email one of Alayna's family members or myself at angela.dekeyrel@yahoo.com.

Thank you in advance for your support. It's people like you that make a difference in the world and we appreciate it more than words can express.