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.