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.

Cheetos Puffs & The Pool!

Swimming with Lexi! This was her first time in a pool.

Alayna enjoyed it for awhile, but it really seemed to wear her out fast. It helped so much that she would keep her sunglasses on! And the toy to distract her and keep her focused helped too.

Patti and Lexi helping Alayna in her new float. It was nice, but she is now strong enough that she needed to sit deeper in the pool. I have a different float that I used with the other kids that we need to give a try!

Alexis, Douglas and Alayna! They enjoyed that the water was about 90 degrees!

Alayna's sitting independently has significantly improved! I will now put her down on the floor with toys and walk away! If she falls, she is pretty good about trying to slow her fall. And she sometimes likes to fall down and she giggles! I'm guessing, but I think she can sit anywhere between 5-10 minutes before crashing.

Her balance is improving and her butt isn't as "round!" She is becoming more aware of her arms and actually using them to keep her up. If she'd just keep one of them out of her mouth she'd have 2 free arms and not just one! This would help.

Whatcha' doing mom?

Alayna laughing! Sometimes she laughs and giggles at the craziest things. It's so innocent and I love it. She makes us all laugh too. Alayna can leave us all guessing at what was so funny!!

Yeah, Alayna has conquered the Cheetos Puff!!! I was getting very frustrated as to why she wouldn't eat anything "dry" like a cracker, fruit puff, or Cheetos. I tried giving her a bite one day and she shut her mouth tight. I finally decided that this obviously wasn't working, so I put 2 Cheetos in front of her on her tray. I figured that when she was ready she'd grab them. I didn't expect it would have been that same day, but she did! And here she is checking it out and eating it. I was in HEAVEN!

Alayna gets very messy between the cheese and the milk everywhere, but I don't care. She is still working on eating the entire cheeto. Right now she seems to eat the part that only sticks out of her hand and then drops the other part on the floor. So, getting that other part up into her hand higher is something we'll work on.

She does pretty good passing it from one hand to the other until it gets too small and it is hard for her to hold on to and bite off.

Yummy! I can't get the Cheetos bag out until after she has eaten her meal. She recognizes it now and she would obviously prefer to eat them over any vegetable!

A HUGE challenge we are having right now is keeping the bib on. Alayna has found the bib and loves to play with it and rip it off. These velcro in the back and I need to find one's that either snap or are like a towel that go over her head. That way they won't come off!

At PT, Alayna has been doing great. She is bearing more weight and standing at this table and playing. We are excited about seeing this. Last summer we just wanted Alayna to hold her head up!
Alayna has on knee immobilizers that don't allow her to bend her knee. It also helps the person working with her free up their hands!
She continues to love toys that make sounds and have lights! I noticed many of us parents at the 1p36 Conference had alot of the same toys. It's a common fascination of all of our kids!
Big girl! When Alayna stands up she looks so tall. We'll keep working and she'll get there! Coming up October 12th, we have her IFSP meeting to begin talks about pre-school placement. That isn't far away!

Alayna is doing good. I hope you enjoyed the photos and updates of what has been happening. We are now all back to school and Alayna starts her "babysitter" routine tomorrow. She will be going to Grandpa Denny on Monday, to Grandma Billie on Tuesday, and to Patti on Wednesday-Friday. Her PT and OT/ST at the CTC will continue as well as her developmental therapy in the home. Alayna is making gains and we love to see her progress. I am dreading the upcoming "flu season" and will work very diligently to keep the home clean and everyone's hands washed. Tis the season to be exposed to more germs. I say my prayers that Alayna and everyone else will stay healthy! I will update again sometime soon!