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.