A Continuous Joy!

" Wearing my helmet and my pink suit from the Ehm's!"

Here is her new hat. It is borrowed from Lexi!
" I love bouncing this bouncy seat! I kick and kick and it bounces and bounces!"
Looking up at Drake!

I plan to take pictures of her head every month and show the results. You can see how flat it is. She has severe plagiocephaly because it is bilateral (on both sides).
Top view of her head. She'll appreciate this someday when she has a beautiful round head. I can't wait.

Alayna continues to supply this family with energy, smiles, love, and a new compassion for life. I was thinking the other day about the meaning of the word "normal." There are many words in our language that now strike me a certain way and make me think differently. Anyway, I actually came home and looked up the word in the Webster. What caught my eye most was the synonym "natural." I questioned myself early on when we began this journey whether or not I'd ever feel my life would be normal again. I don't think that way at all anymore. Caring for Alayna has become natural. It is normal. It's just what we have learned to do and today at a doctor appointment was the first moment that I actually realized how much I'm enjoying her and watching her learn and grow. This is truly an awesome experience and I would like to share that thought with the world! I'm sure people see us and may feel a bit sorry for us at times, but I plead with you not to! This has been a life changing event that gives everyone the opportunity to view life and the world in an entirely different way; one with more passion and faith. Having Alayna has really put things in perspective. I think it has helped all of us accept people for who they are, that differences are what makes the world a neat place, to cherish and embrace each moment, to value family, and to realize how precious life is. Alayna is an angel. Just maybe she was sent to rescue many of us?

So, I will do my best to continue to educate everyone on 1p36 and create awareness. I feel a passion for that. It is a learning experience for everyone. I'm not sure if it is the "teacher" in me or not, but I really hope to spread the word and generate exposure for our entire 1p36 family that is spread across the U.S. and the world. I have lots to share with you tonight. And again, I thank all of you for faithfully checking her blog. Feel free to send me an email at angela.dekeyrel@yahoo.com if you'd like to. I know some of you don't like to leave comments that everyone can read and I understand.

An Article to Share

First of all, I'd like to share an article with you. This was passed on to us in our 1p36 Yahoo Support Group. Back in November when we went to Florida, we met a family with a little boy named Jacoby, who also has 1p36. His local newspaper did a story on him and here is the link. It is very well written and I commend the newspaper for printing it. It was written in such a positive tone. Again, just another way to create awareness. When you have time, take a minute to read it. If it changes one person's feelings about disabilities, it was worth it. I'll be emailing the Argus/Dispatch soon to see if they'd do a story on Alayna! http://ardmoreite.com/stories/011308/living_48758.shtml

Helmet Fitting Already

Last Thursday I had to run Alayna into see Lenny (the helmet guy). She was having some redness of the back of her head behind her ears that wouldn't fade away. He shaved some of the helmet away in the inside and so far, she is getting better. It is still a bit red, so we'll probably be going back by Tuesday. I think this may be a constant thing until it gets just the right fit. Oh, and it is like a cast. Today I noticed it's beginning to have its own smell. That's why we have to clean it every single night. I'm sure we'll be ready to set it on a post and burn it in the front yard when it's all over with!

Peoria Doctor Visits

Alayna saw Dr. Horwitz, her genetic doctor today in Peoria. He was very pleased with her weight and head circumference being right on track. She's just a little shorty pants, so we have to work on the height thing. He was happy to see her progressing developmentally. I actually think Alayna surprised him a bit. Dana and I decided to move all of her appointments to University of Iowa, so we signed a medical records release form and told them we appreciated all of their help and assistance. I wanted to share with you too that I was unaware that Dr. Lisa Shaffer (the doctor that spoke to us in Florida that studies 1p36 kids) was the doctor that diagnosed Alayna. Alayna's test was sent to Signature Genomics and she is the one that did it. Wow! That means Alayna's information is already with Dr. Shaffer and she is in the study. I wonder if she could pass on some more actual details about the results? I may email her and I'll keep you posted.

Alayna also went to see Dr. Vahey at the Eye Center. They dilated her eyes which takes 30 minutes and I think all of us were about asleep in the waiting room. At least Alayna was! Everything checked out good and there is no structural damage or need for eye wear at all. This really is the area that I am not too concerned about. I know Alayna can see. Her delays are more neurological, therefore affecting every facet of her being.

Tubes & Helmet Adjustment Period

Her tubes in her ears seem to be fine. I just need to get the hang of putting in the cotton balls at bath time. There is definitely a strategy to getting them to stay in her tiny ears.

She is adjusting well to the helmet, but really enjoys that hour that we take it off each night. She loves her head to be scratched. I can only imagine how it can itch. And I'm enjoying that hour more than ever before too. I miss being able to hold her and feel her face against mine. It is hard to kiss her too. I often smack myself in the nose or eye with the helmet. Cuddling is difficult and kind of awkward. I'm sure we'll adjust though just like we always do. It too will become "natural." We do get some looks and stares when we are out in public. I think some people are afraid to ask why she is wearing it. I like to watch people's reactions. I'm sure many are just interested like I would be too. We had to graduate to a pink hat of Lexi's. It was the only one we could find that would fit over the helmet and it fits perfectly. And as you can see, we applied stickers to decorate it. I bought kinds for every holiday. Birthday stickers are coming next!

Experimenting with Food

Alayna still eats her veggies and fruits pretty well. Some nights she just isn't as hungry as others. And she has her favorites too. Anyway, I wanted to try and introduce some texture and see how she'd react since she is going to be 1. So, I opted for the biter biscuits. You know, those hard things that make a complete mess. I refused to use them with my other kids, but we're on uncharted territory and I'm willing to try anything! I had to hold it for her most of the time, but she did suck on it for awhile and got to taste it. Her funny faces made us laugh and when I was done Douglas wanted to know where her hard bone went? I laughed again! I said "Douglas, do you think she's a dog?" And then he laughed.

More Therapy!

Last Thursday, Patti, Alayna's babysitter took her to Comprehensive Rehab in Muscatine for an OT and PT evaluation. Dana and I truly want what is best for Alayna and want to provide her with every opportunity we possibly can. This is another therapy center that is closer to our home and fortunately our insurance will help with the cost. She can have unlimited visits based on our plan and her medical need. Yeah! Alayna will continue to go to the CTC in Moline twice a month in addition to Comp.Rehab. It will be interesting to see both places techniques as I'm sure there may be a difference of opinions (so to speak). Dana and I have been very pleased with the CTC and their knowledgeable staff. They are great up there and they care about Alayna. But right now is a good time to add a bit more and bump it up a notch. And the bonus is that Patti is willing to take her. We are so fortunate to have her and we thank her from the bottom of our hearts. We love you Patti and this would not be possible without you! The plan is to go for both OT and PT two times a week. She will go for the first time next Tuesday and then begin on Monday's and Wednesday's the week after. The time slots are locked in, so we will be experimenting with what time seems to work best for Alayna. She still gets tired very easily and naps frequently. Her schedule is a little unpredictable lately. Oh, and one of my former Westmer students is the director over there. I can't wait to see her! She was a smart cookie then, so I'm sure she has excelled in her career as an OT. I'll keep you posted on how it is going.

Again, thanks for reading Alayna's blog. Her birthday is coming up and I was thinking what would be a good present? Well, we plan on getting her a bean bag to sit in, but you know the love that everyone gives Alayna is the best birthday present she could ask for.