Alayna's Angels

Crazy Chi-Omega's from Illinois State University.

We couldn't fit everyone in one photo, so here is the left side of the room too! Didn't want to leave anyone out.

Another group shot of some of Alayna's Angels!

Last weekend my Chi Omega sorority sisters held a fundraiser for Alayna in downtown Chicago. Oh, what a blast! Many of them still live in the city or the suburbs and with families and professions it was difficult for them to come back in November for the Quad City Fundraiser/Trivia Night. So, they decided they wanted to have their own fundraiser. They called themselves "Alayna's Angels" and they truly are just that. Dana and I feel so blessed to have such a supportive network of friends. I think I counted at least 26 Chi Omega's in attendance, plus their spouses, significant others, and friends. Some of them I hadn't seen since graduation day at ISU back in May 1995! And some of them were younger than me and I had never met them before. But they were all there to support Alayna and they expressed this repetitively through their kind words and gracious hearts.

The evening was filled with socializing, a silent auction, a raffle, and a 50/50 drawing. Many of us had our cameras and it was like we were back in college for a night. And for awhile many of us pretended that we didn't have any kids at all! We all enjoyed ourselves so much. I personally enjoyed just seeing everyone and catching up with what they are doing. And oh my goodness, between many of us we have tons of kids! We have lots of "little Chi-O's" coming up!

A special THANK YOU goes out to the main organizers of the benefit: Beata, Diana, Missi, and Kara. You all out-did yourselves and went above and beyond expectations. It means so much for you to have taken time out of your busy lives to plan such a special event to honor Alayna. And a huge THANK YOU to everyone who attended and made it a success. You are all very special people.

2nd Birthday Photos, New Ear Tube & Sleep Issues

2nd Birthday pictures taken at pictureme! at Walmart!

Alayna is fascinated with her left hand lately! She can be soooo sweet.

At most she'd give us is a 1/2 smile while looking at the camera. She'd smile, but never looking at the same time.
Of course we used the bumbo seat to help her sit and it worked nice.
So precious and of course more hands in the mouth!

Walmart Photos

I'm so glad to have gotten photos of Alayna sitting up like a big girl and not laying down. I have been putting off her 2nd birthday photos and I finally just decided to go and do it. Alayna was a happy girl most of the time, but towards the end she was getting tuckered out. The lady was able to get some good shots and I am pleased. The most challenging thing was keeping Alayna's hands out of her mouth and having her sit still. She loves to move around in the bumbo and push back using her legs. I knew getting her to smile was going to be tough. She'd smile, but she would never look at the camera at the same time. She'd always look down or look to the side. Stinker! But she did good considering this morning she had a new tube put in her ear.

New Tube & ABR Hearing Test

It was an early morning for us here at the DeKeyrel household. We had to be in Iowa City by 7:15 am this morning. Alayna was the number 2 patient on the surgical list to get new tubes in her ears and have an ABR test at the same time. Her left tube needed to be replaced because it was clogged and had fallen out. Her right tube was fine so the doctor decided to leave it. And the most wonderful news was that her ABR showed normal hearing results. This is the second ABR that she has had and both results were the same! I'm thrilled and I doubt that she has to have another one for quite a long time. Alayna did well with the procedure, but the most difficult part for her is coming out of the anesthesia. She gets extremely irritable and cries a lot. And she refuses to open her eyes. This lasted for about 30 minutes in the recovery room and I was about to pull my hair out. I felt so bad for her because I think the anesthetic must make the kids feel funny and uncertain. But she eventually snapped out of it, ate her bottle, and off we went! Good job Alayna. Oh, and we got a weight on her...22 pounds. Thankfully she isn't very big because we do a lot of carrying her.

Sleep Issues

We are having sleep issues again. It seems like this goes in cycles for us. Alayna will have about 3 bad months and then maybe a good one and repeat this cycle. It's tough on us when we don't get our rest. And it isn't good for Alayna either. We've tried everything that we can possibly think of. This is a popular topic of discussion on our support group website and I know that many of us 1p36 parents deal with sleep issues. So many of the kids have sleep disturbances in the middle of the night. We wonder why research hasn't documented this as a possible characteristic of the syndrome. I really pray that Alayna grows out of it.

Lately, she is awake for at least an hour at a time in the very early morning. And when she wakes up she usually is crying very loudly to the point that I can hear her over a box fan in the hallway. It's not enjoyable at all. I resort to replacing her pacifier about 2-3 times and if that doesn't work I give up, close her door, and turn the monitor off. I'm sorry Alayna, but mommy needs her sleep in order to function. Melatonin is a natural supplement that can be bought over the counter and is supposed to help with sleep. I purchased some at Walmart and we are trying it. For some kids it works and for some it doesn't. I didn't see much difference the first night, but the second night she slept from 8:45pm-6:45am! Yahoo!!!! But then the next night was torture again. So, I have no conclusion at this point. She is sending me mixed messages!

Annual IFSP Review - Early
Intervention

Last Monday we had Alayna's yearly IFSP review at the CTC with her EI coordinator and therapists. They are all so pleased with how much she has come along in just the last 6 months. She is interacting with toys and is wanting to know how they work. She is starting to bear weight more in her legs and initiate standing from a sitting position on our knee. Her stander seems to be really helping with this and she is adapting well to it. She now gets through at least 45 minutes of therapy when it used to be only a few minutes before she'd get mad and fussy. Eating is going good and she is taking more foods with texture. Her EI coordinator gave us some information to read regarding schooling for her next January. It is unbelievable that it is time to start discussing this already. But when she turns 3 she will graduate from EI and be responsibility of the Rockridge School District. We are thinking about options and in May we will have a 6 month review and likely be closer to a decision. Overall, we are happy with Alayna's continual progress and we are committed to making sure she gets the necessary services to keep moving forward.