Alayna at S.K.I.P & All Other Adventures She Takes Us On!

Happy girl playing with a toy.

Getting pretty for my sister and two brother's birthday party!

At Easter dinner. You ask "Why do you have your hands in your mouth Miss Alayna?" She says, "because I'm still working on the top 2 year molars."

Alayna is going to begin Motion Therapy at New Kingdom Trailriders in May. Our goal is to help her increase her trunk strength and hopefully find an activity that she will grow to love. This was her night for orientation. It didn't go as well as planned due to not napping after a long day at school. Hopefully the next session will go better.

Taking a nap at Easter dinner. Oh they are so sweet when they are asleep! All babies are!!

Big brother Drake wanted his picture with Alayna. Happy 10th Birthday Drake! And yes, it is April and we are wearing Christmas pj's. Oh well, whatever is clean and fits works for me!

Posing with big sister Alexis. Happy 12th Birthday Alexis!

Alayna getting a bit silly with Lexi! I think she is getting tired and she tends to get giggly. Okay, or she cries alot. It's one or the other usually!

Yum, maybe this steering wheel will fit in my mouth?!

Dressed and ready for school. Waiting to eat my daily bowl of oatmeal!

This was one of the last few days she was allowed to have a pacifier.

Let's go mom, I'm hungry!
Sweet little face. And you can see that she even eats the paper off of her hard books and toys. See the page? It's missing part of the sticker. She sucks or chews on just about anything.
More hand in the mouth.

S.K.I.P Update

Alayna has been attending SKIP Preschool since February 1st. She gets on the school bus with her aide at the high school where I work at 7:45am and gets dropped back off at 2:25pm. One of the goals on her IEP is to get Alayna to respond positively to 70% of the school day. That has been the biggest challenge for her. She typically has a great morning and then a not so good afternoon or vice versa. To help meet this goal, Alayna has qualified for ESY (Extended School Year) and will be attending from June 7th through early July every day from 8:30-11:30 am. She gets her PT, Speech, OT, and adaptive PE right at school.

Overall, I am extremely pleased with how she has adapted. The bus ride is becoming the enjoyment of the day. She loves the lift and smiles every time she gets raised up on it. In addition, she is so comfortable now with her KidKart that we use it when we go to other events like ball games. She eats lunch right in the classroom with her other 6 classmates. Which by the way are all non-verbal and have KidKarts or other kinds of "transportation." They are so cute! The class has a Magic Bullet and the school caters a "soft" lunch for all of the kids. Some of the things I probably wouldn't consider "soft" so mashed potatoes are made every day and on hand just in case. But the teachers will put nearly everything that is served in the Bullet. Alayna has eated a hot dog, pepperoni pizza, chicken nuggets, and noodles. I'm not sure it would look too appetizing to us, but hey if she likes the taste that is wonderful! The teachers comment on how well she likes "flavorful" food. I love the daily communication of writing notes back and forth in her notebook that is kept in her bag.

Brace Issue

About 3 weeks ago after her AFO brace was taken off of her right foot, a huge blister, swollen looking thing appeared on the inside of her ankle. She was sensitive to the touch. I thought for a second that her ankle looked broken, but it wasn't. It looked like someone had injected fluid right under the skin. I took her to her orthosist and also had her PT look at it the next day. To make a long story short, she had developed what is called a bursa. It is a fluid-filled sack caused by friction on her brace. Her orthosist made some adjustments to the brace, put a little padding in it, and advised us to leave the brace off a couple more days. So, a week later I thought I'd give the brace another try. Well, the bursa immediately formed in just one day of wearing it to school. So, back to the orthosist we went and we decided to make an appointment with her ankle/foot doctor at the ORA. Dr. Peyvich saw Alayna yesterday and said she had no deformities and that he thinks she needs a different type of brace. I was so thankful because I thought that her tibia might have been out of place and that she would need to be serial casted. Our next step is to return to the orthosist and get casted for a new brace for at least the right foot. I'd prefer to do both, so we'll see what he says. This will be set #3 for AFO's! UGH.

Bye, Bye Paci

Alayna had to finally give up the much loved and adored pacifier. She seriously began "eating" them. Due to teething, she would take it and bite on the nipple and not really use it for sucking purposes at all. She would bite through the nipple so bad that I could honestly just about pull off the end of it in one huge piece. Choking hazard! I was going through 2 pacifiers a week and was completely sick of that expense! Plus I was afraid she'd swallow it. Her SKIP Preschool gave her a textured triangle to replace the pacifier. I attached it onto one of her pacifier holders and we've been working on holding it and using it instead of putting her hands in her mouth. Her hands and fingers are getting better and healing, but about 2 weeks ago she had them so calloused and cracked.

Behavior Issues

Alayna gives us daily challenges in the behavior category. Honestly, her Disney World is here at her house. If we attempt to take her for example to a ball game or a restaurant we are more than likely going to pay a very high price. She may last for a short time, but can turn on a dime. And when she throws one of her fits, watch out! She screams, cries, holds her eyes shut tight, bites at her hands, and basically goes crazy. These fits can last up to 20-25 minutes usually and then about 80% of the time she'll snap out of it and act like nothing happened at all. Can we say DUAL PERSONALITY! I had the lovely opportunity to witness one last night right in the middle of the doctors office. I had to put myself in the zone that I was the only one in the office, ignore her, for a minute tried to pretend she wasn't really mine, and go about filling out the paperwork I had to do. And then about 15 minutes later she was fine. It happens most often when she is tired and she has not discovered a good way to soothe herself into a nice little nap. It's frustrating as heck! Most of the time I resort to keeping her home due to the fact that I'm wore out and not in the mood for one of these occurences to happen. So, does anyone else in my 1p36 family feel prisoner to their own 4 walls of their house?

New Bedroom

It has been decided that Alayna needs her own bedroom. My intention was to have her and Alexis share a room. However, as parents of special needs children know, that is probably not the most ideal situation due to sleep distruptions, crying, getting sick, etc. So, our dining room is in the process of becoming Alayna's new bedroom. We had it painted just yesterday and now we are on to getting french doors made for privacy. Then we'll get some furniture in there, a bed of some kind, and new bedding and curtains to finish the look. I'd like it to be completed in less than 4 weeks before summer break starts! Oh, and the chandelier needs to be changed to a ceiling fan. That may look a bit funny in a bedroom. The only bad thing is that she won't have a closet, but we can use drawers and borrow space in Lexi's closet if needed. We are all excited to get her a space of her own. Especially for those most trying, stressful times when she just needs to be left alone!

PT, OT, Speech Accomplishments

I wish I had more to say in these areas. Alayna still has no will to want to get on all fours, crawl, use her arms to move, etc. Weight-bearing is still a major task. I can't wait for the day that she begins to move around the house. She is too content on being in one spot! But, people who haven't seen her for awhile say how much of an improvement they see with her. I think she has definitely come along in how she focuses on things and how attentive she can be. She pays more attention to the detail in things and watches us more often. I think that is what they are referring to. She has started to "rock" herself on the floor and try to sit up that way. Silly girl, use your arms to help you get up! As far as the eating goes, we have no problem in that area at all and she loves her sippy cup of milk.

Neurology Update

Alayna went to Iowa City for a check-up. She has been seizure free for over 1 year now! And because she is on the lowest dosage possible of phenobarbital for her size, the doctor recommended to keep her on it for 1 more year. If at that time, she has been seizure free still, she will begin to wean her off of the medication. I keep my fingers crossed. The only upcoming doctor appointment that I can remember off hand is in Peoria with her developmental pediatrician, Dr. Morgan and it is in July.

Salt Lake City, Utah - July 29th-Aug 1st

Dana and I will be taking Alayna to SLC, Utah for the annual 1p36 Deletion Support & Awareness Conference. We are truly looking forward to seeing familiar faces and meeting the new ones that are from out West. We've never been to the mountains out there either, so we are excited to see Utah. It will be a quick trip, but one that is near and dear to our hearts. We will make every attempt possible to make it to this wonderful, annual meeting every single year. Those people are part of our family and the connection that we have with each other is unexplainable. We support each other in many facets and talk nearly daily on Facebook.

Blogging

I apologize for the lack of blogging lately. Our lives are very busy, filled with many activities every single night. And now that ball season is in full swing, we are even more overwhelmed with running. In addition, I thank you all for the support you have shown and expressed for Drake during his battle with MRSA. The MRSA seems to be gone, however, he is not fully recovered physically, but is continuing with PT. In about 5 weeks, the doctors will make the decision whether to go forward with another surgery or keep with PT. I'll keep you posted.

Taking care of a family and becoming a parent is the most rewarding experience ever, yet the most exhausting too. And having a child with special needs requires full-time care, attentiveness, patience, and endless love. It isn't easy sometimes and I am glad for my supportive 1p36 family because they live the life that I do every single day. I'm not alone. That thought provides me with enough "peace" to take on the next day.

First BIG Day of Preschool!

Dressed all pretty for her first day of preschool!

Good morning Alayna!

So cute!
"Mom, I'm not sure about this."

All bundled up, snug and tight and unable to move much :( waiting for the school bus.


Alayna getting a bit fussy waiting.

Alayna & Me - And no tears from mom....I had to go teach right after this and that would've been bad! :) Had a few butterflies though.

Chris, Alayna's driver, loading her up on the ramp. At this point, she was more intrigued on what was going on.

Going up and up some more.

Almost there now! Unlocking the brakes so we can back her up.
She's finally in the bus and Chris is doing her tie-downs.
And there is the bus driving away.....:( .....have a good day little Alayna.
Alayna got a new pair of shoes today! I ordered her some Hatchbacks which are awesome to get on with her AFO's. They fit so well I think I'm going to order a black patent leather pair for dressy days. So cute and worth the money!

Today I was actually running ahead of schedule! I didn't want Alayna to be late for her very first bus trip to preschool, so I made sure we were up gettting dressed and fed before 7 am. When we arrived to my classroom I strapped her up in her KidKart, wheeled her down the hall to the door, and patiently waited for the bus. Alayna was a trooper, but as you can see from a few of the photos she was getting restless and irritated. I think just being strapped in the KidKart is a big adjustment for her let alone all of the other parts that goes along with this adventure. I haven't had the chance to talk with her bus aide, but I'm eager to hear how the ride wen

At lunch time I broke down and called the preschool to check on her. I just need affirmation that she was doing okay. It's hard to imagine that she was out in the world without anyone that she really knew. The secretary was so nice and she got Ms. Renee, Alayna's teacher, on the phone. Alayna was doing pretty good, but of course had her fussy times around her normal nap schedule. Eating lunch was a bit of a challenge too, but she ate 4 bites of pepperoni pizza that they put in the Magic Bullet! Don't tell Alayna, but that just sounds so nasty. She also ate a bowl full of apricots which I've honestly never given to her before. In fact, I don't think I've ever ate apricots! It's going to take some adjustment time for Alayna that is for sure. I just pray it only gets better with each day. I want this to work so badly for her.

Alayna arrived back at my school at 2:30 pm. The issue right now is that I'm not done teaching until 3:10 pm. Patti, Alayna's babysitter, works in the library and will get Alayna as long as she is in the building. However, Alayna got back today and had a major meltdown. It's hard to take care of her in the library. She just wanted out of the KidKart so bad. Patti took her back to her house and she was fine. She ate a snack and was probably relieved to be in familiar surroundings. I appreciate that so much. I'm kind of playing the next few days by ear and see how things go. I'm not sure if I'll have to resort to getting a different drop off spot other than at my school.

What I really like is that we have a notebook in Alayna's book bag that we can correspond back and forth with. That makes it nice since I'm not able to drop her off or pick her up. I can also let Ms. Renee know how Alayna's morning has went. Tomorrow is a new day, so wish her luck again! This new routine is a big step for the both of us.

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with 1p36 Deletion Syndrome doesn't TAKE a special family, it MAKES a special family." I liked this when I read it and I borrowed it from another 1p36 mom. Well said Kelly.

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!