All We Can Say Is "WOW"...Thank you!

Alayna playing with her new singing penguin from the Galloway family who drove all the way from the suburbs of Chicago to meet her!

Alayna's Benefit

Saying "thank you" just doesn't seem like enough. Alayna's Benefit last Saturday night was a complete success. I'm so thankful for all of the people that joined us for dinner and trivia, for those who donated items to the silent auction and bake sale, for those who have made monetary donations to her fund, and to the many others who worked that night to make everything run so smoothly. I've heard nothing but good compliments on how things flowed nicely, how organized the event was, and how much fun everyone had. That is due to the dedication of my family and friends who put this together. Many people donated hours of their time to make this benefit so wonderful. Our community is amazing and the support everyone has shown us is priceless. Alayna will get her stander and her Kid Kart! Thank you to everyone who has supported this cause.

Teeth

Well, Alayna wasn't pleasant over the weekend and lasted until about 7:30 pm at the benefit. On Sunday, Dana and I discovered why....she is cutting her 2 year molars on the top of her mouth. As soon as we applied some orajel, she stopped crying and went to sleep. I was glad to finally figure out what was wrong! It isn't always obvious with Alayna like it might be with typical developing children. It's like a mystery or a secret that you just have to keep digging at.

Ear Issues

Alayna has been sleeping decent for her anyway. Most of the time she is still waking up one time in the wee hours of the morning. This morning she was awake from 4-5 am, but then finally fell back asleep. However, when I took her to Patti's, Patti noticed that her left ear looked "dark" inside. When we looked closer it was obvious that it had been bleeding. I cleaned it out the best that I could, but immediately made her an appointment with her pediatrician.

I took her in after school and he told me it was one of two things. It could be that it is just scratched or it could be that the tube in her ear has moved. Unfortunately, my gut is telling me that we are wishful thinking that it is only a scratch because Alayna has tiny ears and she still isn't a child that puts her fingers in them. My guess is that it is the tube. Dr. Neptune couldn't determine which it was because of all of the blockage and his inability to see the tube. So, we are to flush it with drops 3 times a day and return in a week. I plan on taking her the Friday after Thanksgiving to get it checked. I'll keep you posted! I hate to think about making another trip to Iowa City to put her under for the procedure of putting another tube back in, but we may have to. The good thing is that maybe they could perform the sedated ABR test at the same time that was planned for January. If it comes down to needing a tube, we will have to get her in ASAP to Iowa City and in the meantime make sure she doesn't get an ear infection.

Early Intervention - IFSP Plan

Last Thursday, we had Alayna's IFSP 6 month review. During these meetings, Dana and I express our concerns and we set goals for Alayna for the next 6 months. Her therapists make recommendations and they are taken into account as well. I am very proud to say that Alayna accomplished at least 3 of the goals we previously wrote. It is rewarding as a parent to say that Alayna can now sit with support, play with her toys, pass a toy from one hand to the other, put a toy to her mouth, eat more than just stage 2 baby foods, and I'm sure there are more that I'm missing! But you get the point. Any progress or milestone met is huge gains for Alayna and we are proud of her. She takes itsy-bitsy baby steps, but she'll get there.

Again, thank you very much for supporting Alayna, me, and my entire family. You don't know how much that means to us and how much it helps us. Here is a video montage of some of the photos I took at the benefit. I apologize for not taking more, but it was difficult doing that and trying to get around to as many tables to talk to people. I know I missed so many of you and I'm sorry! By looking at the photos you can see there were soooo many people there. Thank you to our family friend, Denise, for taking more photos that night. I can't wait to see them.

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Alayna Makes Front Page of The Muscatine Journal

I enjoy giving Alayna hugs! Here she is full of giggles. If you catch her in the right mood her laugh is very cute. I just wish she was like this all of the time. Trust me, she has her fussy moments quite often. I guess we take the good with the bad.

Relaxing with dad tonight. About 10 minutes after this photo, she was fast asleep in her bean bag chair. Her eyes are looking a bit heavy, huh?!

Newspaper Debut

We feel very lucky that a journalist from the Muscatine Journal was willing to write an article about Alayna. The Muscatine Journal is one of our local newspapers that covers news in Muscatine and the surrounding towns. The article served two purposes in our minds. One, to spread the word about 1p36 Deletion Syndrome and to educate anyone we could reach. That was the most important purpose to both Dana and myself. And secondly, to publish the information about the upcoming benefit being held this Saturday night. Here is a link to the article as it is on the web. In the actual newspaper it was printed right on the front page with a cute photo of Alayna. We are very proud parents and of course love the opportunity to glorify Alayna and tell everyone what blessing she truly is.
http://www.muscatinejournal.com/articles/2008/11/11/news/doc4919aae172b8a671062428.txt

Neurology Update in Iowa City

Today we went to Iowa City to see Dr. Mathews, Alayna's neurologist that saw her last November during her 2 week stay at the hospital with RSV. The reason why we are seeing her again is because Alayna had 2 seizures back in September just out of the blue. Alayna was put back on phenobarbital and since she started the medication has only had 1 seizure that we have witnessed. Normally, Alayna has been on the liquid form and it tastes nasty. Usually we put it in her formula bottle to help disguise it. Fortunately, we get to try the tablet form and put it in food. She is a good eater, so I hope she swallows it okay and it's small enough that it won't gag her. We are allowed to cut it in half if we need to, but not crush it as it also has a terrible taste like the liquid. Dr. Mathews didn't feel like an EEG was necessary at this time, so the plan is to revisit her in 6 months. If things change or an issue suddenly comes up, we will handle it over the phone. Alayna weighed in at 22 pounds with clothes on and was 31 inches long. She's doing good!

Referrals to Other Iowa City Doctors Made

While we were at Iowa City, I asked Dr. Mathews if she would be willing to make referrals to a vision doctor, cardiologist, and a geneticist right there at the hospital. It has been our goal for awhile to get all Alayna's records and doctors at the University of Iowa. It is convenient and much closer to us than Peoria. Plus, we can always do two or more appointments in the same day because they are always willing to coordinate with the other doctors. So, Dr. Mathews made the referrals and we are in the process of setting up all of those appointments. She also reinforced to us that she is familiar with 1p36 Deletion Syndrome and believe that they did a study on it about 10 years ago. The geneticist she referred us to is very familiar to it and interested in it. We were so thrilled to hear this! Dana and I feel like Alayna is in the best hands at University of Iowa Hospitals and Clinics.

Thanks again everyone for all of your continued support. We look forward to spending this Saturday evening with a lot of you! We have a feeling that Alayna will be benefiting from this fundraiser for a long time. We are blessed to have her in our lives, to have a wonderful family, and to have you as our friends.

Grinding Teeth & Early Bedtime

Swinging and eating! This is heaven to Alayna.

Alayna enjoying a relaxing moment in the warm sun.

Alayna fell asleep right at trick-or-treat time and her other three siblings were anxious to say the least. They were not patient enough to wait until her nap was over. So, Alayna stayed home with daddy and instead I dressed her up the next morning for a picture! I figured she wouldn't care if she missed out this year. Now, next year may be a different story!

Alayna lounging! Look at that face. I try to let her practice sitting up by herself without having me behind her. I rolled a blanket up and as you can see she fell back on to it. She's getting tons better though and is grabbing at toys and playing with them while trying to sit.

Alayna fell over! This is her on her side laughing about it.

Alayna is doing so much better reaching and holding her bottle. It's actually nice to know that if we are rushing to get ready, we have the choice of giving her the bottle and using a blanket to help prop it up in case she lets go. It's wonderful. If you think about it we are almost to 2 years of feeding her a bottle. It's getting a little old...ha, ha.

Alayna playing with two of her favorite toys at the high chair. Christmas is coming up and that is good because Alayna wishes for new musical, light-up toys! She is actually showing signs of boredom with a few of her toys. She just isn't as interested in them anymore.

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Grinding Her Teeth

Alayna has started to grind her teeth. She does this at times throughout the day just to do it I guess. We are doing the best we can to tell her no and to get her to stop it. I'm going to have to do some searching on our yahoo support group website to see if this is an issue other parents have had to deal with. I just don't want it to get out of hand and ruin her teeth.

Holding Her Own Bottle

Dana and I still resort to helping Alayna drink her bottles, but as you can see in a few of the photos she does a pretty good job by herself. Occasionally, she lets go of the bottle and it falls. So, we use a blanket to help prop it up. It is nice to know that she is able to hold it on her own for the most part. I'm not sure how much actually remains in her mouth because she likes to spit it out and let it run out the sides of her mouth. Crazy girl! Most children are done drinking bottles around 1 year of age. Alayna is almost 2 years old (January 29th) and I'm ready to give up the bottles. She isn't though and we must be patient. This is her primary source of nutrition still and until her eating habits get better, we have to keep the bottles.

Early Bedtime

Lately, Alayna has changed her bedtime routine by eating dinner around 5:30-6:00 pm, taking a small bottle around 7:15 pm and then falls fast asleep by 7:45 pm! This is crazy too. She goes to bed so early. I was trying to get her to take her last bottle around 7:30-7:45 pm, but by that time she was so tired she wanted nothing to do with it and would refuse to take any of it. She'd throw a big fit. That poses a problem because we like to put her phenobarb in her bottle and therefore she wouldn't get the medication. I'm not really sure if we should put the phenobarb in her bottle, but nobody has ever told me not to and it tastes yucky. Anyway I can get it down her is what I do. Thankfully, she is sleeping better through the night. It's a hit and miss thing. Last night she slept for a solid 10 hours. It was wonderful. However, the night before I was up out of bed at least 7 times replacing the pacifier from 3:30-4:45 am. UGH. I've got the walk to her crib down pat though and I don't remember doing it half the time. I fall asleep pretty fast once I return to my bed and hit the pillow!

Sitting

We continue working on sitting. Here in this video, Alexis is helping her a little. Most of the time we don't have to touch Alayna much, but just be there behind her in case she falls. As you can see though she is doing a much better job of "righting" herself and trying to keep her balance. She even extends her torso and sits up straight in this little clip without being forced to. She is also playing with the toys we put around her. I think by the time she turns 2 she is going to be sitting completely by herself. That's our goal!

Early Intervention Meeting

Our IFSP meeting is next week to review Alayna's goals and to write down any new goals and/or concerns that we have. All of her therapists do an evaluation of Alayna. I will inform you later of how it went.

Thanks again for reading about Alayna and keeping up with her progress. Progress is slow, but it is being made! She continues to teach us patience and to be thankful for the things we so easily do in life like sit, eat, and talk. All of those things are such hard work for Alayna and she is a trooper. We continue to be so proud of her.

A Glimpse of the Past Few Years

Photo and video editing at www.OneTrueMedia.com

I decided to put a slideshow together of quite a few pictures over the past (almost) 2 years. It's quite amazing to see how Alayna has grown and changed. We continue to celebrate each milestone and love her to pieces. Because this took me some time to figure out, I'm out of time to type. My "motherly duties" await and children are literally pulling on my legs. I will post again soon. For now, enjoy the pictures! And again, thank you so much for your support.

Another Update, Pic's To Share, & Prayer Requests

Alayna battles a skin condition on her legs called keratosis pilaris. To learn more about it visit http://en.wikipedia.org/wiki/Keratosis_pilaris . It just so happens that a few other family members share that same condition. There is no "cure" for it, but things that can help reduce the visual appearance. And since the weather has turned cooler, we are now battling the rosy, red cheeks. They don't seem to appear dry, just pink a lot!

Yesterday, I fed Alayna and even let her use the spoon a few times (okay I had to help her so she wouldn't shove it down her throat). She got a kick out of it and laughed a few times. I think it makes her feel more "independent" and a big girl. I believe Alayna realizes when she does something new by herself and she feels good about it. As you can see in her left hand is a Cheetos Puff! She did pretty well with about 3 of them and when they got too small I took them away.

As you can see by the look on her face, she still "gags" every now and then but only on real food. Here she is still eating a Cheetos. Baby food is a breeze for her, but anything with a texture or something she has to actually chew sometimes causes problems. She is just learning what to do with it in her mouth, move it side to side, and swallow it. A few days ago she tried little marshmallows that were in an apple salad and she loved them. They worked well because they were already soft and easy to maneuver and chew. And as you can see, she gets terribly messy when she eats by herself. On bath nights I'm okay with that, on other nights I do the feeding! She rubs it everywhere including in her hair. Yuck!

Here she is at Grandma & Grandpa Bush's wiener roast. It was a very nice night that wasn't too cold, so I allowed her to be outside until her Great-Mimi had to go in to get warm. She followed her inside.

Oh I love it when she smiles like this.

Sleep & Sickness

Alayna's sleep has been getting a bit better. Not great yet according to my standards! Most mornings she wakes up between 2-5 am, but yesterday she slept until 5:45 am and let me tell you that I felt like a totally different person at work. I actually had some energy and it felt good to sleep 7 hours straight. Now this morning we were up by 4:30 am. And that to me is actually night not morning. The thing that frustrates me the most is that she usually won't even take a bottle to go back to bed. Now what baby have you ever known to refuse a bottle!? Especially in the middle of the night or early morning! But normally, she refuses to eat and continues to whine or cry until she falls back asleep. Dana and I are finding that to be the biggest challenge right now. We are unable to make her comfortable or do anything to help her with this process of going back to sleep on her own. We replace the pacifier, turn on her mobile or light display on the ceiling, give her blankie to her, cover her up, move her to our bed, move her to the carrier, take her downstairs, put her in the swing, and the list could go on and on. We've tried it all except putting her in the garage!! Just kidding. We've decided to leave her in her crib and make her cry it out. Her sister, Lexi, who shares a room tells us she hears absolutely nothing. I believe her. I want to be a kid again.

Alayna has seem to have gotten over her cold for the most part. Her ear seems to be better too because we were battling that also. I'm crossing my fingers that she stays healthy. At the last appointment she got her first flu shot, so we will follow up with round 2 next month.

Future Appointments

We've got some upcoming appointments that are very important. Her IFSP yearly meeting is November 11th and that involves Early Intervention and her therapists from the CTC. On that same day we head to Iowa City to visit Dr. Mathews in Neurology. And then in early January, we will go to Audiology in Iowa City and they will perform another sedated ABR test to check her hearing. And I pray that in between times we can limit the number of pediatric appointments due to colds as much as possible.

Trivia Night - Tables are Full!

Like I have said in a few of my previous posts, we are completely overwhelmed with the generosity and support that we have received for Alayna's Benefit. We are happy to say that we've got a full house for trivia, but at the same time very sad to say that all of the tables are spoken for. The response has been so big that if we would have known this we would have looked for a larger facility. We apologize for this and invite you to please come join us for dinner, socializing, and the silent auction.

Chloe Is In Heaven

In recent posts I asked for prayers for Chloe, a one-year old little girl with 1p36 from Texas, who had been in the hospital. I am sad to say that the grandpa notified the 1p36 Family that she passed away on Tuesday evening. She is with God in a place where she is pain free, smiling, and peaceful. I ask that you say a little prayer for her family as they deal with her loss. They said that they are thankful God gave them Chloe that she taught them a lot. Her time here was short, but it made a huge impression on many people. I never had the opportunity to meet Chloe face to face, but I too felt a connection to her and her family. May Chloe rest in peace and be a guardian angel from above.

Rockridge Graduate - Please Say a Prayer

A 2008 Rockridge graduate and one of my former students, Brandon B., is battling cancer. There is nothing more that can be done for him here in the Quad Cities and they have also been to Texas. This week they are going to Ohio seeking any help that they can get. Please say a prayer for Brandon. And say one for the specialists in Ohio in hope that they can give the family positive news of being able to assist Brandon. Thank you.

Heaven’s Very Special Child

A meeting was held quite far from earth
“It’s time again for another birth,”
Said the angels to the Lord above
This special child will need much love.
Her progress may be very slow
Accomplishments she may not show
And she’ll require extra care
From the folks she meets down there.
She may not run, or laugh or play.
Her thoughts may seem quite far away.
In many ways she won’t adapt
And she’ll be known as handicapped.
So let’s be careful where she’s sent,
We want her life to be content.
Please Lord find the person who
Will do this special job for you.
They may not realize straight away
The learning role they’re asked to play,
But with this child sent from above
Comes stronger faith and richer love,
And soon they’ll know the privilege given
Their precious child so meek and mild
Is HEAVEN’S VERY SPECIAL CHILD. (Thank you Kristen for passing this on)

Halloween Pictures & Her First "Bug" of the Season!

Now how come she won't smile like this at Sears Portrait? It's like she has a phobia of any portrait studio. Again, it just shows that her world is a bit "smaller" than most of us and she likes her home.
She looks so cute in her Halloween candy corn dress from Daddy.
Oh those curls and that tongue!
Alayna will be 21 months old on October 29th. Wow, her 2 year birthday is just around the corner and it is hard to believe.

Alayna caught her first cold bug of the season and here she isn't feeling so good.

Another Try At Pictures

I've yet to get a really good studio photo of Alayna for quite awhile, so I thought I'd take her to Sears on Saturday evening and give it another try. As you can see in the pictures above, she was really happy at home. She had a nap and ate well all day. I thought, "Yes, we are going to do good!" Well, we walked into Sears Portrait and she instantly started crying. Oh brother! We tried to take just one picture, but that wasn't going to happen. Luckily, they weren't busy and allowed me to take her for a cruise around the mall and come back when she settled down. It took about 45 minutes of pushing her in the stroller, a very tiny cat nap, and a bottle and then we returned to the store. They actually got some really good shots of her showing nearly every expression she does other than a smile. We'll keep trying. It just seems like no time is a good time for Alayna. I've tried mornings, afternoons, and evenings and it all depends on how Alayna feels at that very moment. She is still very unpredictable and her stamina is still not very long.

Sick!
On Sunday morning at 12:30 am, Alayna woke me up whining. I discovered that she was extremely stuffed up and couldn't breathe through her nose. That's tough for a little one to handle. By 2:50 am, we were up for a few hours and it was apparent to me that pictures might not have went very well due to her not feeling 100%. On Sunday, she drank maybe 4 oz of fluid all day. She refused to eat cereal or veggies and didn't want a bottle. I had to help her drink white grape juice in a sippy cup to keep her hydrated. And I went to the extreme of setting the timer on the stove for every 25 minutes because she just wasn't drinking.

On Monday, I took Alayna to the pediatrician to get checked out. She had a 101.4 temperature and a bad cough by then. The good news was that her lungs sounded clear and that was a huge relief due to what happened to her nearly one year ago (2 weeks with RSV in Iowa City). He put her on an antibiotic in case she had an ear infection. It is so difficult to see in her ears due to large amounts of wax and small, long, and narrow tubes. She weighed 21 lbs 4 oz, but that was with all clothes on. So, my guess is she is still hovering around 20 pounds which is smaller than my other 3 kids when they were 12 months old. It is known that our 1p36 kids are smaller, so it isn't surprising.

This little bug has thrown her schedule off track and we've been up each night or early morning. Last night she fell asleep by 7 pm (way too early) and was up by 4 am. Then she fell back asleep at 6:15 am and I had to wake her to put her in the van to go to the babysitter. Not the ideal schedule for a school teacher mom! My ideal schedule for her would be to stay awake until 10 pm or even 11 pm and sleep until 7 am! Is that too much to ask for????!!!!!

Shriner's Clinic

The Shriner's Clinic a few weeks back went very well. A doctor observed Alayna and asked me to explain her condition as it was unfamiliar territory to him. That too isn't surprising because of its recent diagnosis. They accepted Alayna into the program, took her picture for identification purposes, and said that they would be in touch soon. It didn't take any longer than 30 minutes. Hopefully they will be calling soon to discuss future needs for Alayna and how they could possibly help out. I look forward to hearing from them.

Special Prayer Request

One of our 1p36 family members, little Chloe, is fighting for her life at the Texas Children's Hospital. She became very sick suddenly on her first birthday and ended up in the intensive care unit. She has been through numerous procedures and medications and the family is measuring progress minute by minute. I am asking that everyone say a prayer for Chloe and her family. The power of prayer has no limits. Thank you.

Overwhelming Benefit

Family and friends continue to plan the Trivia Night, Dinner, & Silent Auction Benefit for Alayna. The response in all facets has been overwhelming and we can't begin to express our thanks to every one involved.

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.