Lots of Updates!

Smiling at mom! She loves to play and be "talked to."
Alayna watching mommy talk.
I actually was excited to turn around and see this! Alayna was on the floor playing and I had set a Lia Sophia catalog down in a place that I thought was out of her reach. I got up for just a minute and came back to her having a hold of one page and her ripping of another. It was exciting...she may finally be "getting into things" very soon. I would have never said this with my other three, but remember milestones with special needs children are celebrated a bit differently!
Alayna continues to enjoy musical toys and this is a "new" piano. Our local area has a newly opened second hand store called Once Upon A Child and I highly recommend it for toys, clothes, or any other "baby/infant" need that you don't want to spend full price for. This was from there. UOAC has a website and is a chain, so check out if your local area has one.
More playing! And do you see the orange and green toy bar in the background right above her head? Well, I've said before that it's her favorite toy not only for when she is laying on the ground, but for her also to use when she sits. And they use it at therapy too. It was discontinued in stores, but I found 3 of them at Once Upon A Child. They are normally $25 and I bought each of them for $9.50! Bargain!!!
"The camera again, mom?" Alayna loves to suck on her hands, but she is using her blanket more and I'm okay with that. She puts it in her mouth often.
Here she is one morning in the van heading to Patti's for the day!
I know this is a blog for Alayna, but I'm a proud mom and have to squeeze the others in every now and then. Here is Alexis, 10 years, sporting her new Firebirds uniform.
Alexis is one of the team's pitchers and she is doing a marvelous job. Look at that form! She gets great coaching from all of her coaches, but especially from Traci, her pitching coach. Alexis has been working very hard at pitching and I hope it all pays off for her someday. We are very proud of her.

This is my superstar, flag football player, Drake! He is 8 and enjoys the sport. Last weekend he got 2 TD's and "sacked" the quarterback! The other day he asked me if football players get paid in college. He must be thinking long term here. Because then he said "Well, I know they do in the NFL. Like $200 a day!" Drake says he wants to play for the Dallas Cowboys. We are very proud of him too.

Siezures and Phenobarbital

From my last post, it is obvious we've been dealing with some rough waters around the DeKeyrel house, particularly with Miss Alayna. I just want to know why she is so crabby, fussy, and crying so much. Nothing seems to make her happy and these "spells" come on with no warning and last for 20 minutes to sometimes over an hour. Talk about wanting to pull your own hair out. After reading many messages from others on the blog and on the yahoo support group site, I began to question whether or not these instances could be seizure related. My mom had raised this same question, as well as many others.

Let me say again that God does work in mysterious ways. Last Thursday I went to Patti's to pick Alayna up after school. She was asleep on the floor. We talked for awhile so that she could rest a little longer. As she began to wake up and stir, she opened her eyes, but they were in a dead lock straight forward. It was kind of like she was in a daze and wasn't quite awake. Then she began to act like she was choking and started to do strange things with her mouth. Thankfully, she never stopped breathing. It lasted for about 1-2 minutes. Nothing we tried "snapped" her out of it. We just had to be patient and let it runs its course. Patti and I were actually caught off guard and not expecting this to happen at all. I am glad though that it did happen when both of us were there to witness it.

I immediately called the Department of Neurology in Iowa City when I got home. She was under Dr. Matthews care when she was in the hospital for RSV last November. Remember, during that time she had 2 siezures at IC and was put on a daily dose of phenobarbital. She has been off of that medication though since early May. I reaccounted everything that had happened in addition to letting them know how fussy she had been, not sleeping well, and a slight decrease of appetite. The nurse relayed the information to Dr. Matthews and she said it sounded like a seizure to her. The decision was made to put Alayna back on 5mg of phenobarb 2 times a day.

Alayna did end up having another seizure at the Rockridge Homecoming Chili Supper while we were in the high school cafeteria. It didn't last as long, but it looked the same as the other one about 2 hours earlier. The good news is that I haven't noticed any more since then. It doesn't comfort me that I can't rule out the possibility of her having them while she is sleeping or maybe a small one when she "spaces out" so to speak.

The phenobarb makes her sleepy not long after she takes it. We've been giving her it in the morning and as late as possible at night. It tastes terrible and giving it to her in a syringe doesn't always go very well. It's even flavored bubble gum, but that isn't the best disguise. We try to put it in food or a bottle, but we have to guarantee that she is hungry or she won't take it and that is a problem. She can't miss a dose or she poses a risk of having a seizure due to the withdrawal of it in her body.

Her sleep pattern has been majorly disrupted, which makes our sleep majorly disrupted! For the first few nights she was waking up every 3-4 hours and wouldn't fall back to sleep easily. It has gotten better over the last few nights, but I'm still waiting for that night she sleeps a solid 8 hours and no middle of the night interruptions. The two things that I contribute this problem to is the medication and the amount of napping she does during the day because of her body adjusting to it. I don't know!

Shriner's Clinic

Alayna will be going to the Shriner's Clinic on Saturday, October 4th. They support many families who have children with many different kinds of disabilities. One of which is chromosome deletion syndromes. I was so excited to see that in their pamphlet. I have to learn more about this wonderful organization and I look forward to seeing if they can help out our little Alayna. I am thankful that we know the Pape family because they are active in the Shriner's and they are the one's who recommended it to us. I will keep you posted on this as it develops.

More Vocal

I just have to quickly mention how much Alayna has become more vocal. We are used to hearing the usual grunts and nasally "oooohhh's" from Alayna, but she is getting sound to come out of her mouth. It isn't sounds that I refer to as internal sounds. The other kids are getting a kick out of it and like to talk back to her in the same way. She really talks alot in the van. Hey, it's a start and it is a promising one at that!

1p36 Conference

This year's 1p36 Conference in Boston went very well. I hated not to be able to go, but it is an expense to get out there and we just went to the one held in Florida last October. If you check out Whitney's blog, Nate does a wonderful job of reviewing the information that was presented. Anyway, the next year's conference is already in the beginning stages. A poll is taking place right now on our support group site to see where it should be held. I'm keeping my fingers crossed, because right now Indianapolis, IN is leading and that is so close to us. These conferences are one of the most valuable opportunities for us to meet other parents and children and share ideas and feelings. It reaffirms that we are not alone in this adventure and that there are people out there raising children just like our sweet Miss Alayna.

Mark Your Calendars! Saturday, November 15th

I can't say enough about how lucky Dana and I are to have such supportive families and caring friends. A group of special friends is planning a Trivia Night Fundraiser for Alayna to help create an account used for equipment (Stander and Kid Kart), therapy, and other medical expenses. They are planning a fun evening with a meal, silent auction items, raffles, and of course, TRIVIA. Oh, and a special appearance will be made by Alayna, the guest of honor for that night. It will be held at the Teamster's in the Rock Island Industrial Park right off of Andalusia Road. Alayna thanks everyone in advance for their support and asks you to please join her in the festivities. If you've never been to a trivia night before you need to come, it's a lot of fun.

Journey Ahead

We continue along this journey with Alayna and thank all of you for your thoughts, emails and continued prayers. It's a journey and when we hit destinations along this path like milestone moments we celebrate.