Happy 3rd Birthday Alayna & Preschool Begins!

Alayna getting ready for her birthday party!

She's officially 3!

She has the roundest little bottom and slides down on the leather couch!

Laughing with her foot up in the air.

Playing with her toys and refusing to make eye contact with the camera. Imagine that!

Alayna loves it when I wear a hat. It's very intriguing to her. She plays with it and here she got a grip and put it in her mouth. Gotta taste everything I guess!

I was trying to get her to participate a little in the unwrapping part of the birthday, but she still isn't too interested. She'd rather just play with the toys. Thank you to everyone for the lovely gifts. Let's just say that she'll be one of the best dressed at her new school!

Singing Happy Birthday to Alayna. And of course, she had to have a book to keep her entertained. By this time she was getting cranky and tired. Right after this, she went to bed....officially the first party-pooper of the night!

These are all of the cousins on my side of the family....Will, Chloe, Ava, Alexis, Audrey, Alayna, Jalen, Cameron, Drake and Douglas.

Since Alayna loves the Spongebob theme song, as a family we thought it was appropriate for a Spongebob cake! Yummy....it was sooooo good.

Alayna has officially graduated from Early Intervention :( This was her last session with her PT, Kim, at the Children's Therapy Center. We were a bit sad. It's been nearly 3 years that we've been working with these therapists and it is hard imagining not having them in your life. A new chapter is opening up. However, the great thing is that if we still want Alayna to have some services through the CTC, we can file it with our insurance. We'll just have to see what Alayna's schedule will allow in the summer. For now, preschool will take up every day of the week.

This is Alayna standing at the table. She's doing pretty good with it. We still have to use at least one knee immobilizer to help keep her up. She will bend the knees and fall otherwise. She'll get there!

Preschool Begins Tomorrow, February 1st!

For the past few months, we have been eagerly preparing for preschool. We had her IEP meeting, a tour of the preschool, met the principal, and met her classroom teacher and all of her therapists. We've been buying school supplies for her "locker", getting her book bag packed, and making sure we know every facet and gadget of her KidKart. I've been meeting with our district transportation director since I work at the high school and we finally have her bus driver and bus aide determined. I truly can't believe it is tomorrow!

Last Friday, Alayna's birthday, I took the day off of work so that we could finish our appointments and also do a "trial" bus run into preschool. I was so glad that I had the opportunity to do this. We basically did it just like we would on a school day. It couldn't work out any better than this. I take Alayna to my high school where I work, I load her in her KidKart, her driver swings over by where I park to load her up, and then goes over to the bus barn to wait for her bus aide. Her bus aide has a morning bus route, but it seems to work out just fine. Both the driver and her aide are EMT's, so I couldn't put her in better hands. It took approximately 25 minutes to get to the preschool. She will leave in the morning around 8 am and should arrive at school by 8:30 am (this is when they start). Her school day will be over around 2pm and then she'll be brought back to me at the high school.

One of the cool things right now is that she is the only student on the bus because she is the only child in our district attending the SKIP preschool. Nothing like getting individualized attention! And my plan is to leave her KidKart in my classroom instead of hauling it home every night. I honestly don't use it much because when we do go someplace I throw her in a stroller. This will save me alot of time in the morning from having to unload it, plus it will be warm and I can get her all situated in a warm classroom.

Tomorrow is officially the 1st day of preschool! Little Alayna will definitely have some adjustment to this new schedule. It'll be interesting how she does. I joked with the teachers if they had ever had a child get kicked out of school for behavior the first day! They laughed and reassured me that she'd be fine. I have a feeling she'll be receiving lots of attention from the staff. They told me that's the way it is when the get a new student and they are very excited! Pray for Alayna and I'll keep you posted.

Cry, cry, cry....so a trip to the Pediatrician

A week ago this past Friday, Dana took Alayna to Iowa City for a vision appointment. Well, let's just say it wasn't a fun trip. She cried nearly 3 hours straight and Dana could do nothing for her. So, I made an appointment with her pediatrician that evening. Everything physically checked out fine, but we have blood work being done to see if anything seems wrong. The ironic thing is that starting Saturday morning she turned back into this littlest, sweetest, angel. What gives?! It is so difficult when they can't communicate. Maybe she just wasn't feeling good that day. I mean, we all have those days where we are just off. I don't know! She keeps us on our toes that is for sure. After preschool tomorrow, she has her 3 year old physical, which I'm sure she'll love. Right now she weighs 24.8 pounds.

Happy 3rd Birthday

Three years ago, January 29, 2007, our lives changed in a way that we never expected. Alayna continues to make us better people, teaching us patience, appreciation, value of life, how to enjoy each minute and each milestone, and to stop and smell the roses more often than we used to. I think that her life has impacted many people who know her and that is one reason why she is God's gift to us. Through Alayna, God is working in mysterious ways. Her turning 3 marked the end of one chapter and the beginning of another. I pray that preschool is a wonderful thing for her and that we seen Alayna continue to progress. Alayna has had wonderful care-givers over the past 3 years and to them I say "thank you for your kindness, love, and nurturing and may God bless you." The great thing is that Alayna will still get to visit each of them during her two week breaks. So, Happy 3rd Birthday Alayna. We love you so much.

Christmas Fun & Preschool Update

Alayna with Great-Grandma Alice and all her first cousins on the DeKeyrel side.

The DeKeyrel cousins getting ready to unwrap presents!

Family photo - Dana & Angie with Douglas (5), Alayna (2), Alexis (11), & Drake (9)

Sister Alexis and Cousin Audrey entertaining Alayna...or should I say she was entertaining them!

Alayna and Audrey (9)

Alayna getting giggly on Christmas day!

Me and my little Alayna

Grandpa Denny & Alayna

My four kids with their grandparents, Denny & Diana (my parents)

Alayna checking out Grandma Diana's pretty necklace. She loves to chew on them!

Alayna loves her Grandma Diana.

My kids with their Great-Grandma....a.k.a....Mimi.

Alayna loves her books.

Alayna still doesn't have her top 2-year molars. I imagine that is why she is chewing on everything.

Douglas, Drake, Alayna & Alexis on Christmas morning!

They helped Alayna unwrap her presents!

A picture with her presents!

What a cutie, but I'd have to agree that her nose looks a bit orange. Too many orange veggies!
Alayna with Santa at her Children's Therapy Center Christmas Party!
Alayna sleeping at the CTC Christmas party.
Alayna laughing at her book. She loved that one and now it is broken :(

Christmas Fun

As we parents know, challenges come along with holidays. Like getting all of the kids ready, going many places, and not keeping a normal routine to the day. Overall, Alayna tolerated the hustle and bustle pretty well, but she did have a few moments when she would've rather been home in her own comfort zone. And we did too, trust me! The biggest challenge we faced with her was getting her to take a nap. When Alayna gets tired, she fights her sleep and if she isn't in her "normal" setting, she is even worse. She loved the mashed potatoes, fruit salads, and cool whip desserts. I hope next year she gets into it a bit more and participates in unwrapping her gifts. We'll just have to wait and see!

Preschool Is Around the Corner

Alayna's IEP is written and she will officially be an attending student at SKIP (Special Kids in Preschool) starting February 1st! It is an interdistrict preschool for special needs children and it is amazing. Her IEP meeting went extremely well. I went into it with a list of things I wanted addressed in her plan and every one of them were already taken care of. The teachers didn't miss anything. We are so thankful that she has a place to go that will address all of her needs from PT, ST, and OT. In addition, she will have music therapy and adaptive physical education. She will attend five days a week from 8:30 am - 2:00 pm. I will put her on the school bus where I work (at the high school) around 7:45 am and she will be dropped back off at the high school in the afternoon probably around 3:00pm. Since we aren't out of school until 3:12pm, she will hang out with Patti, her babysitter, in the library where Patti works. The only thing right now that hasn't been determined is who will be her bus aide in both the am and pm. It is written in her IEP that Alayna is to have an aide, so our hope is that this position will be filled soon. Alayna will be transported in her kid kart to and from school. So, we will enjoy our old schedule for one more month and then on February 1st the new schedule begins. It's going to be an adjustment getting up earlier to get Alayna dressed and fed breakfast before leaving. Right now we don't do this, our babysitters do!

We are really excited about Alayna starting preschool. Of course, it makes us a bit nervous, but we know that we will see many improvements from Alayna. Other 1p36 parents tell us what a dramatic change preschool had on their child and many people in our area tell us that we won't be disappointed in the SKIP program. Obviously, we know it will be the biggest adjustment for Alayna, not us. Alayna's classroom teacher is Ms. Renae and Alayna will be the 7th child in her class. There are 4 boys and 3 girls. They were excited to have another girl! There are also at least 2-3 aides in the room at all times. They informed me that not very often are all the kids in the classroom at the same time due to being pulled out for therapies. Lunch is fed in the classroom and they cater a soft diet for them. I'm excited about having someone else work with Alayna on eating more textures. Ms. Renae informed me that she does have a magic bullet just in case certain things need chopped or pureed. That's great...we have one of those too! I will also plan to send some spare food for Alayna's "locker" in case she wouldn't care for the lunch of the day. Other items we send for her "locker" are diapers, wipes, a spare outfit, a blanket, any familiar/soothing toys, etc. We have some paperwork to still complete, like her physical exam, but otherwise she will be ready to go. I guess it is time to go shop for a cute little backpack! Bye, bye diaper bag!

Finally....An Update!

Getting ready to go get a group photo at Walmart. Let's just say that this was the best picture that day!

Alayna with her sister, Alexis, brothers, Drake & Douglas, and her cousins Audrey & Will.

Thanksgiving day!

Trick-or-Treating at Mimi's place. Let's just say that Alayna isn't too into this yet.

Alayna got hot in her costume and quit early. She had more fun sitting in this big chair, playing with her book.

Lounging!

What? Are you calling my name?

In her Halloween P.J.'s.
Crazy hair morning! Her hair is still very curly and crazy. Thank goodness for ponytails.
She loves chewing on her books.
So cute.
Alayna still enjoys sitting in her bumbo seat. But, you must watch her because she likes to push herself backwards.

Preschool Update

We've begun the process of meeting with our school district and lining up preschool for Alayna. We had a meeting with 6 S.K.I.P. (Special Kids in Preschool) representatives, which included Alayna's classroom teacher, principal, OT, PT, and ST. I felt so good about this meeting and how much they really seemed to care about Alayna and her needs. And how excited they were to have her come to S.K.I.P. After this meeting, I knew that this was the right place for Alayna. Our local school district is wonderful, but it's a small, rural district with very little to offer Alayna. We are so thankful that we have another option for Alayna that is close to home. A preschool for special needs children....awesome.

On Monday, November 30th we go to S.K.I.P. for Alayna's evaluation by all of the therapists and teachers. Then on December 9th, we will meet one final time to write her IEP. This process should all be completed by Christmas break. So, when Alayna turns 3 on January 29th, she can begin school the next week. This is very exciting for us, but at the same time it's hard to believe that she will be 3 years old and it's time to "let go" a little bit. I am thrilled to know that she will be getting daily therapy at school and to have these professionals help build on Alayna's skills. I will keep you posted on how things develop.

Doctor Appointments

We recently traveled to Iowa City to follow up with Alayna's "ear" doctor. Her tubes looked great and she seems to be doing fine. He did clean them out a bit. Overall it was an easy appointment other than holding her down and keeping her head still while he did the cleaning. That's never fun!

We need to visit her developmental doctor in Peoria sometime soon. It's been about 1 year and we are due. So, that will be on the calendar in the future.

A few weeks ago Alayna weighed in at 24 pounds with her lightweight clothes on. So, she's probably a bit over 20 pounds. She is eating good, but it becoming a bit more picky on what she really wants. Stinker!

She, as well as her siblings, have all received the seasonal flu shot and the H1N1 vaccination. None of them had any side effects and I feel much better with them being protected.

Holiday Times

The holidays throw in a twist to her "normal" routine and take her outside of her comfort zone. Alayna enjoys being at home for the most part. She definitely didn't enjoy the Halloween, trick-or-treating this year, so maybe next year. Yesterday for Thanksgiving, she did pretty good adjusting to the two places we went, but only napped briefly. Fussiness set in a bit earlier than usual, but she slept good last night. It's just something we have to learn to deal with and work with her on making the best of things!

Professional Photo

We tried to take all of the kids to Walmart for a photo, but Alayna was not cooperative at all. I am wondering if she was under the weather. But at least we tried! I've come to the conclusion that the best way I'll probably get a photo is to have someone come to our house. That way the kids are more in their environment. The photographer felt so bad that she gave me a card to come back and try again and get two free enhanced photo pages. I just might take advantage of that!

Busy, Busy

I apologize again for not keeping up with the blog. The only excuse I have is that we are busy, busy, busy. School this year has been an extra challenge for me with two new classes to prepare for and the kids activities are endless. Thanks for being patient and for continually checking back to see if I've updated it. I will try to be better. Have a happy holidays!

The First 1p36 Newsletter, Fun Pictures, and more....

Alayna is doing much better sitting on the floor and playing. She lasts a bit longer now before falling over!

Alayna tired and trying to find mom!

It was cute. Alayna was sitting so well that she even used her foot to kick the toy and get it to play. I had never seen her do this before. I was impressed because it took some balancing to do.

Alayna is now really good at finding her pacifier and putting it in her mouth. She even turns it around and passes it from one hand to the other in order to successfully get it in her mouth.

Alayna is starting to use her hands for more balancing and not relying on her little round bottom.

She still LOVES toys that light up and play music. This is her favorite V-tech book. I think she'll love these types of toys for a very long time.

Another V-Tech treasure that I found for $3 at a yard sale! And it is a book with more pages for her to turn. She loves it. It reads each page to her and will sing a song if she pushes the right button. I love it and it was a bargain!

So cute! What a sweet little face.

Okay, one issue we have to battle is her wanting to chew on all of her books. Everything still goes in the mouth. This one is fine because it's plastic. But we have a Disney Princess book that has teeth marks everywhere and I think she's even digested some cardboard from it! LOL.

Sleeping Issue

We continued to battle Alayna's sleep schedule back in July/August. She was waking up in the middle of the night or early morning very unsettled and unable to fall back asleep. It was getting frustrating and we tried everything. Well, let's just say......nearly everything. One thing we never considered was that she might be waking up due to hitting the sides of the crib or getting a leg stuck in between the slats and not being able to free herself. She normally falls asleep down on a palate of blankets in the living room near the television. It's just always been "her spot" to go to bed. Typically I would then carry her up to her room for the night. Well, one night we just decided to not move her and leave her there. I brought the monitor down to the living room so I could still hear her. We were desperate for a good nights sleep. And we were thrilled when she slept until 7:15 am the next morning! So, for now her bed has been on the living room floor and she has room to roll around without feeling confined. I know that sounds kind of cruel, but whatever it takes is our motto. And she's safe and warm.

IFSP Meeting - 6 Month EI Review

Next Monday we have Alayna's 6 month review through Early Intervention. We are meeting with her EI coordinator and therapists at the Children's Therapy Center. I am excited about this meeting particularly because we start talking about pre-school. Again, it is our hope to have Alayna attend SKIP (Special Kids In Preschool) in Moline, Illinois. And our hope is that she can be bused in to SKIP and brought home at times that are accomodating with everyone else's schedules in our very busy family! I'm keeping my fingers crossed that it all works out. She can attend every day from 8:30am-2:30pm. That will be a long day for her, but I do think the benefits will far outweigh the downfalls. Plus, who knows, maybe she'll be extra exhausted and sleep even better! I will definitely post on how things go. In about a week and a half, we meet with the principal of one of our local elementary schools because he is the coordinator of the preschool program for the school district. He will probably be able to provide us with more information. The earliest Alayna would begin preschool is February 1st, 2010. That will be here before we know it!

Spongebob Squarepants!

I have to end the post on a funny note. My other three children watch Spongebob all of the time. If it isn't on at home, then a DVD is on in the van. It's either that or iCarly. Well, Alayna now recognizes the theme song to Spongebob. When it comes on, she instantly freezes and turns to watch the TV or listen to the music. She will wait until it is completely over and then resumes what she was doing. It cracks us up! I love that she recognizes songs. It's one good sign to learning!

1p36 Newsletter

As I've mentioned so many times, we have such a wonderful support group of 1p36 families from all over the world. We chat online on our yahoo support group website and most of us are on facebook too. I can not tell you how much this means to me. I don't know what I'd do if I didn't have these people to go to. One of the group's goals was to start doing a newsletter. The first one just came out. Please check it out! The contributors did an amazing job. It's at http://www.1p36dsa.org/. Just click on "services." This is our new website for the group which is now called 1p36 Deletion Support & Awareness and is a non-profit organization dedicated to helping others.

A New Swing Is On the Way!!

I apologize for being behind on posts. Getting back to school and work has kept us so busy and computer time is slim to none. By the time I get a chance to get online, it's late and I'm exhausted! I do have a few new pictures that I'll try to put on the blog this weekend. I don't have them loaded onto the computer yet....so check back on Monday! Thanks for being patient and for continuing to follow Alayna's journey.

I do want to show you the new swing I just ordered for Alayna. As I've posted in the past, she LOVES to swing. I know she misses it. She still sits in her baby swing, if you can believe that (she's 2 1/2 years old)! But she is too big and it doesn't move anymore! She uses her feet and tries to "pump" herself and push her toes off of the floor just to get herself to go. It's cute! Well, she won't have to do that anymore. This new swing is called the Biggie Adapted Swing by Abilitations. That is a division of School Specialty which we order school supplies from. I found that interesting! Anyway, it is to be able to support 2-10 year olds and has lots of neat features. Here is a picture. Now we just have to wait for it to arrive. And yes, it is for indoors so she can use it all of the time. I am so excited. It's an early Christmas gift!

Now, I'm switching topics. Our support group has had quite a few "new" members in the recent months. Finding out that your child has a disability is one of the most difficult things to deal with. One of the mom's posted this grief model. I found it so fascinating that I wanted to share it with you. As it is written in terms of losing a loved one, those of us who have learned we have a disabled child has lost the dream of the "typical child" and the "what if." So, I think the language is adaptable to our situations. In the beginning I did feel robbed. But I don't feel that way now. In 4 months, Alayna will be 3 years old. I still am going through some of these stages. As I read them, I realize that I bounce around from one to the other depending upon the given day. Some days I'm angry and mad and yet others I show acceptance and I have hope. I wonder if I'll ever complete the model?

"The 7 Stages of Grief"...

1. SHOCK & DENIAL-You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the loss at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

2. PAIN & GUILT-As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs. You may have guilty feelings or remorse over things you did or didn't do with your loved one. Life feels chaotic and scary during this phase.

3. ANGER & BARGAINING-Frustration gives way to anger, and you may lash out and lay unwarranted blame for the pain of loss on someone else. Please try to control this, as permanent damage to your relationships may result. This is a time for the release of bottled up emotion. You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair.

4. "DEPRESSION" , REFLECTION, LONELINESS-Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving. During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things that could have been, and focus on memories of the past. You may sense feelings of emptiness or despair.

5. THE UPWARD TURN-As you start to adjust to life and kind a daily routine that works, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.

6. RECONSTRUCTION & WORKING THROUGH-As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life's situation. You will start to work on practical and financial problems and reconstructing yourself and your life.

7. ACCEPTANCE & HOPE-During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this. But you will find a way forward.