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.

The Up's & Down's of 1p36 Parenting

Alayna trying so hard to sit. She is now 19 months old.
Alayna continues to love toys that play music or light up. This bus was one of the boys baby toys and it has been a life-saver. She loves it.

Alayna smiling in the stroller at Adventureland.
This is another toy that Alayna loves. We have 2 of them - one for the diaper bag and one for home. I used one of Alexis's hair ties to strap it to the stroller so she could hit it herself and we wouldn't drop it.
Alayna is becoming better with the self-feeder. She still drops it, but holds on to it longer than before. Here she is having some green grapes.
It was funny to see her face when she bit down on the grapes and they "popped." She likes to hold things and as you can see is still making the connection that it is actually her holding it. It's like she enjoys checking herself out and is starting to realize those are her hands and they have a greater purpose other than being sucked on!

Finally a smile....because we haven't had too many of them around here lately. I'll explain later!
I had to sneak a picture of Douglas in here. This is one of the many frogs he has found over the past week. He tried to bring it in the house, but fortunately I went to the garage at the right time and stopped him. I told him I'd go get the camera instead and take his picture with Mr. Frog. As you can see, he is so proud! We have so many tree frogs around here and my boys are ALL BOY and will pick up just about anything. Douglas did sneak a little tree frog in the other night while I was on the phone and it wet itself all over him. it wasn't too funny at the time, but now I laugh!

My dear friends, it's time for another heart to heart. Remember, you are my scapegoats and I'm sure I'll feel better after I'm done typing what I need to say. Like I said in my early days of blogging, this is my therapy and you read at your own risk.

I'm going to start first with the "down's" my family has been dealing with lately. It's always better to end with the "up's." Raising Alayna has been by far the biggest challenge I've ever faced. I do consider myself a mentally strong person, however, having Alayna has put me to the test and I often doubt how mentally stable I really am. Lately, Alayna has been going through periods of constant crying and/or hand and arm biting. These instances just pop up without any warning. A little one's crying for such long periods of time each and every day can wear on anyone. I don't care how strong you are, it is tough to listen too. And to some of you, that might sound minor or silly, but I'm not kidding when I say it is driving my entire family crazy. It's not fair to my other three kids that I have to devote so much attention to Alayna. It's not fair that they have to put up with the crabbiest, short fused mom in Illinois City. Alayna's behavior is so unpredictable. It makes it tough to go anywhere because we never know how she will behave. So, our house is pretty darn loud and chaotic until they are all in bed. It's a challenge helping the older two with homework, keeping Douglas busy doing something, all at the same time dealing with an extremely fussy, high-maintanence Alayna. Sometimes I just join in with her crying.

So, you are probably asking yourself "is she is teething or does she have something wrong with her?" The answer to that is "no" and "no." I have tried to document when these "outbursts" occur and see if there is a common trigger and I haven't found anything. We've been to the pediatrician for a complete check-up and all looked good. We tried putting her on an oral antibiotic for a possible ear infection, but that has not been the solution. She went back to Iowa City this past week and they also say her ears look good. We have also increased her food intake to make sure it wasn't hunger and that isn't the answer either. I think it's just Alayna.

After reading posts on our 1p36 Support Group site regarding this topic, I just think it is something many of the 1p36 kids go through. They sometimes cry a lot and the reason is unknown to the parents. Being unable to communicate may contribute to part of it and also being somewhat immobile. I am glad to know that we are not the only 1p family going through this. I am praying it is a phase and that "it too shall pass." I'm truly at a loss and it is very frustrating. I want a smily, giggly, happy baby and lately that has been a rare thing at any time of the day. Today, on the way over to Lexi's softball game, Alayna was crying pretty hard for the duration of the ride. Douglas was in the van with me and I could tell he was getting frustrated too. He said "Mom, we need a new baby." I said, "Why do you say that Douglas?" And he responded, "Not this one. This one cries all of the time." It is just as hard for our other 3 children to deal with this as it is for Dana and I. My heart gets sad. Sometimes, my world feels like a very lonely world. No one quite knows what we are going through.

Alayna has cried so much lately that her "voice" is horse and her arms are bruised from biting at them. Thankfully, she hasn't bit them hard enough to draw blood, but her bruises are pretty noticeable. And that is so hard to explain to people who have no idea what 1p36 Deletion Syndrome is. All we can do is reinforce not to do that and pull them our of her mouth. Let me tell you though that it is tough sometimes because she is strong and she gets really frustrated and nothing stops her.

Another issue that I've been dealing with is the feeling and knowing that we are a "different" family. I'm not sure if that is the right word, but you get my drift. I'm well aware that I'm still dealing with this process of acceptance. I thought I had that taken care of, but obviously not completely. I've noticed the last few times that I've been around people from our community or other families, I tend to withdraw. And especially around those families that have children close to Alayna's age. I'm just not my chatty, out-going, talk to everyone self. I say quick hellos and keep conversations short. After coming home from "Bookbag Night" at the kids elementary school I told Dana about this realization and how I don't mean to do it, but I think it's just my defense against becoming upset, crying, or facing the fact that Alayna is not developmentally appropriate for her age. He validated this feeling by telling me that he too has had difficult times. One occuring while at a close friends house watching their little girl a month older than Alayna run around and carry on. It is so hard and I'm not sure it will ever be easy. It's something we will probably deal with the rest of our lives. So, I would like everyone to know that if Dana or I seem distant sometimes, it is probably those defense mechanisms kicking in to help us cope. We do not do it intentionally, but please understand it is part of raising a child with special needs and the process of completely coming to terms with that.

On the "up" side, however, are the cute smiles and short, little giggles from Alayna. We love singing Itsy-Bitsy Spider to her because of her instant recognition to the song and the grin that comes along with it. Even during her fussiest, temper-tantrum moods, this song has been known to be the only cure that will snap her out of it. When she makes eye contact with her sister and brothers, Douglas especially because he is always in her face, and lights up with a grin, it melts my heart. When Alayna does something to surprise us and her siblings are the first to see it and they scream "Mom, look!" it is a very exciting moment. They too long for those little accomplishments that require so much hard work from Alayna. Watching her hold her sippy cup or self-feeder and see her excited that she is doing it herself is cool. We can't wait until she is totally cup feed and no more bottles. One of my favorite times is when Alayna is comfortable enough to be held over my shoulder and as I gently rub her back she just cuddles up and every one of her muscles relaxes.

There are many rewards that come along with raising a special child, but lately it has been tough. I am always the one saying take one day at a time. But in reality, that is a lot to ask of me sometimes! I am human and normal, daily activities are enough to trigger a thought into our families future. I can hear a wedding song on the radio and it's enough to send tears pouring down my face. I can see an advertisement for a college and that will also make me cry. I watch my daughter, Alexis, pitch her first ASA softball game and while I am so darn proud of her I can't help but cry and think of my little Alayna. Don't get me wrong, I am proud of Alayna, but in a different way. And it's this "difference" that I have to get past, again, not really knowing if that will ever be possible.

The emotional side of raising a child with any kind of disability is indescribable in words unless you are the one in that situation. No amount of money or services would ever be enough to ease that part of it. It can be a lonely place sometimes and societies ignorance sure doesn't help the matter. I've said it before that God has the ultimate plan. I wonder what that is every single day and I ask him every single day. And I sometimes ask him if he was sure he picked the right family for Alayna, especially during my crazy moments. And, yes, I still cry. As a matter of fact, as I type this, tears roll freely without effort down my face. I'm not sure whether I cry more for me or more for Alayna. I say my prayers every night asking for guidance, strength, and patience to get through the next 24 hours. I pray that things will eventually get easier and we will begin to be able to enjoy Alayna more and that her "moods" will pass. It truly is an effort for my entire family to just make it through each day. I pray to God that someday each one of the older kids will look back on this time and realize that all of the sacrifices made were to benefit the entire family and I hope they will understand the "hidden" stress their parents were going through. I pray to God to help me be a good mom because I doubt my effectiveness more than ever before. And I pray for all disabled children and their families, especially those on my 1p36 Yahoo support group, because without them I would be lost. They are my "people" who help me keep going. And lastly, I ask for forgiveness, because I'm the first to admit I'm far, far away from perfect.

I am sorry it took so long for a new post. And I just realized this is a long one. I hope to get things going again and I'll try not to keep you waiting and checking so long this next time.