Great News About Her Hearing!!!!!!!

Miss Alayna getting ready to come home from Trinity after 5 days in the NICU. We were soooo ready!
What a sweetie. She's such a tough cookie. Her face is red due to a reaction to all of the tape they had on her face and the medications.
Has she come a long way! I look back at photos of her and I never realized how blind I was to the fact that she looked so sick. Of course, I was probably a mother in a bit of denial.

I thought I'd share a few old photos with all of you. I don't have any new ones right now!

I have a quick update for you. We just got back from Iowa City tonight. Alayna had an appointment in the Department of Otolaryngology to have a sedated ABR and to get her tubes checked. Her tubes are still there and look good. We've had absolutely no problems with them (knock on wood). And the most exciting part of the day was that her ABR shows normal hearing! Yes, I said "normal hearing!" This just goes to show that there is an almighty God who answers prayers and miracles do happen.

Alayna passed her hearing test at birth. So, of course, I didn't doubt anything was wrong. That is until she just didn't respond to some things and hit milestones. After her 1p36 diagnosis she was given a hearing test at BHASED two times, but had never completely "passed" either test. Alayna had a sleep deprived ABR in Peoria and it was also inconclusive due to an ear infection. And a few weeks ago when she had her tubes put in they tried another ABR. And again, we had no results due to fluid in her ears.

Now that she has had the tubes in place, we've noticed a big difference with her alertness and how she startles at things more often. It was good timing to do another ABR. And Iowa City supports sedated ABR's and believes that sleep-deprived ABR's don't really "work." Alayna was given 4.5 ml of chloralhydrate to make her sleep for about an hour. She actually slept until we got home at 6:00 pm. The poor thing hadn't eaten for almost 12 hours. Anyway, the ABR today showed results that suggest normal hearing in both ears. We are all so happy. We revisit this department on July 30th to check the tubes again and do a behavioral test in a sound booth. Right now, the audiologist sees no apparent reason to repeat the ABR. We'll keep our fingers crossed and hope her hearing remains the same or improves with time....just like her development. I'm so thankful to not have to get her hearing aids. We've got a helmet to contend with and that is good for now.

I keep my faith in the Lord and he keeps answering my prayers. I said a prayer to him before Alayna went in for the test. I told him we would glorify his name and praise him if he'd watch over Alayna and deliver us good results. Please continue to pray for Alayna and praise the Lord for the many blessings we have received.

HAPPY 1ST BIRTHDAY LITTLE ONE!

January 29, 2007: Alayna was born at 7:03 pm, 6 lbs 2.8 oz, 18 inches
Look at her now! One year later: almost 20 lbs and such a big girl!
Playing at her highchair with a few of her new birthday toys.
Such a sweet girl.....so easy going.... and always happy! We love you Alayna!

In the bathtub! Like my crazy, helmet hair?
I like my baths!
Baths sometimes relax her so much that she falls asleep before she leaves the bed. I usually dress her and help the other kids while she kicks on the bed.....well, she fell fast asleep in no time! Her party the day before wore her out!

One year ago today was another joyous day in the DeKeyrel household. We had a new addition to the family. Alayna Kay, born at 7:03 pm, weighed in at a tiny 6 lbs 2 oz. It was one of the happiest days of our lives, but at the same time remembering the events of that evening makes me a little anxious. It was the most gut-wrenching, heart-breaking nights I've ever experienced. I was thinking about it last night while laying in bed ready to go to sleep. And literally, I found myself having difficulties breathing. It was a year ago, but the memories seem so etched in my mind and are still so vivid. I can remember the nurse coming into my room at 11:30 pm without Alayna and I didn't even have to ask. I had been wondering where Alayna was and I knew something was wrong by the look on the nurse's face. I waited to call Dana, my mom, or anyone else until 6 am the next morning and instead decided to spend the remainder of the evening and early morning hours by her side in the NICU. I couldn't sleep. Are you kidding!

It's the weirdest feeling having a baby and being so excited one minute and then having your world turned upside and inside out the next and having the lowest of low feelings ever. This wasn't my plan and I had a difficult time accepting it. But you know what? We made it through and I give thanks to God for that, to all the medical professionals who've taken care of Alayna, and to all of you who supported us every step of the way. I can't believe that she is one year old. In a way it has gone by fast, but when I think of everything she has been through, it's been a long year too.

In those early days, Alayna battled keeping her oxygen levels constant. She had difficulty sucking, breathing and swallowing all at the same time. Feedings were such a challenge. Nursing was stressful. She had an ASD and a VSD in her heart. She slept the most I've ever seen a baby sleep. She wouldn't even wake to eat. She would sneeze when she saw bright lights and this would trigger the "gag" reflex and she'd literally throw up. Alayna still doesn't cry and has the highest pain tolerance of anyone I've ever met. She has battled a UTI and spent 5 days in Peoria, gone through multiple x-rays, has had an MRI, EEG, and cardiogram, has had an ambulance and helicopter ride, spent 14 days in Iowa City, has had tubes in her ears, and has had multiple ABR hearing tests. Whew! Not to mention the tons of pokes by the needles and IV's, multiple doctor evaluations and assessments, continuous therapy sessions, and her new helmet. She has come a long, long way though. She is eating fine, she is staying healthy, she is growing stronger, and she is absolutely the biggest blessing in our lives.

Alayna has touched so many people and to me that is amazing. Who would ever imagine such a tiny little life would have such a profound affect on everyone? Changing the way people think, making them see the world in a slightly different way, making them appreciate the gifts that they have received from God, and realizing that differences are what make us unique. I could go on and on. I speak from my heart when I say these words. I think about January 29, 2007 and realize that it could've just been an ordinary day like most others. But it wasn't. God had plans to make it an extraordinary day by giving all of us Alayna. He sent her specifically to Dana and I and our family, but he sent her to all of you too. If you are reading this blog, you've been touched by her presence. Even if you have never met her in person, you've read about her and probably feel like you have. I'm honored to be Alayna's mom and I think she's one neat kid. I look forward to her teaching me more in this next year. Alayna needed help blowing out her birthday candle this year and I helped her make a wish. I wish for her to be healthy, continue to grow and progress, and enjoy life each and every day. Most of all, I just want her to be happy. As her mom, I look forward to witnessing her development and seeing what kind of person God intended her to be.

Dear Alayna, happy 1st birthday sweetheart. We love you so much. I've never seen your siblings as compassionate as they are today. You've touched them in a way that is difficult to describe with words. Just know you've permanently etched your name on all of our hearts and you've got our attention. I still believe that you were sent to us to teach us something. May God continue to watch over you and bless you.

ALAYNA'S PRINCESS PARTY!

"We had a big celebration with my mom's side of the family! And I was the princess!"
Alayna got her first piece of cake! She put her hands in the frosting and with a little help, she finally found her mouth and licked it off. She just had a little bit though. This was actually her first taste of anything else besides baby food and formula.

Lora holding Princess Alayna. What a cute photo!
Alayna with her siblings and cousins Audrey and Will.
Alayna and Ava! Best cousins! They were so cute together. And what are the odds of actually getting a photo with both of them sticking their tongues out!
They are both looking at the same time....take the picture! It's a good one too!!!

"Yum mom! This frosting is good stuff!"
Her very yummy cake from Olde Town Bakery in Moline.
A fist full of frosting!
I'm getting tired! This was just prior to her rubbing her eyes with frosting and the sides of her head. Her hair was nice and sticky! Oh well, it was fun!

On Tuesday, January 29th, Alayna will be 1 year old. It has been an amazing year, full of learning experiences, frustrations, hospitalizations, and milestones. She has been a blessing to our lives and has taught us so much. Last night, my side of the family came together to celebrate Alayna's first year and it was a great party. Alayna has taught me the importance of family and sticking together. I realize sometimes families go through difficult times that may cause tension and stress between each other. And that is completely normal. But the simple fact that will never change is that we are a family and we stand behind one another. Sometimes it just takes events like this one to remind us of that. Alayna and all of the DeKeyrel's want to say "thank you" to each of our guests for coming and sharing this special time. I have lots of pictures to post, so I've decided to put another post below this one with the remainder of the photos. So don't stop looking after this post!

Alayna received some great gifts last night. She got some toys that are "skinny" enough on the sides to hold on to herself. She is really enjoying them. Many of them light up and make noises and she even got a VTech ball that rolls, lights up, and plays music all by itself. Hopefully it will help get her moving! Of course, she got plenty of adorable outfits. Thank you Ava for helping her open them up. Alayna fell asleep while unwrapping presents and cousin Ava stepped up to help. We enjoyed watching you last night. And I especially loved how you embraced each and every article of clothing coming out of a box. Too cute! And Alayna got some money too which we put into her savings account for something she may want or need in the future. Thanks again everyone.

Be looking for her birthday post on her actual birthday and we've got another party coming up next week for the DeKeyrel side. Lots of action this week!

Pictures From My Birthday Bash!

Alayna and Ava! Aren't they the cutest things you've ever seen! And they are so serious in this picture. James, Lora and I were trying so hard to get them to smile. I have to admit that I miss the "chasing" around stage that Ava is going through. And I love to watch her talk! Alayna will get there and Ava will be helping her along the way!
I'm getting tired Mom! I need a nap!
Starting to open the presents!

Alayna (all tuckered out) with Grandma and Grandpa.

Alayna with Mimi!
Alayna with James, Lora and Ava!
Alayna with Great Aunt Linda "Bella" and Great Uncle Ron!
Alayna with Auntie and Uncle Mike!
Alayna with Auntie (Aunt Annette was way too for my kids to say)!

Alayna with Drake!
Alayna with Great Aunt Jackie! Great Uncle John snuck out before I had a chance to take a picture. We'll get one when we deliver the Girl Scout Cookies! Sorry we missed you.
Alayna sleeping while she was supposed to be opening gifts!
Alayna with Cousin Karly and AJ!
Alayna with Cousin Shanna! We missed a photo with Jalen and Cameron too, but they were there! And Ryan and Abby snuck out on me too! Thanks for coming!

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.

Tubes, ABR, STARband and Interesting Issues

She will still stick her tongue out if you ask enough times!
Sleeping in her STARband. She took yesterday off due to her tubes being placed in her ears. The schedule today is to wear it 2 hours and then off 1 hour and not wear it at bedtime to sleep.

Yesterday went well, except for having to be up by 4:00 am! We arrived at the hospital at 5:57 am and were immediately called back to what would be Alayna's prep/recovery room. The nurses took her stats and went over the surgical consent while the anesthesiologist discussed his plan. They took her at 7:20 am and she was back with us by 9:00 am. The tubes only took about 10 minutes to place. The ABR hearing test took the most time. Unfortunately, it was inconclusive (again!) because she had a lot of fluid that had to be drained from her left ear. We will have it repeated again in 3 weeks on January 30th. The ENT put "T" tubes in her ears. It isn't the standard straight tube. It actually looks like a T and is supposed to help them stay in longer. She has small ear canals, but not the smallest that he has ever seen. I had to ask! The great thing is that if she does get an ear infection we will notice by seeing drainage from her ear and it can be treated by a high concentrated ear drop and not an oral antibiotic. She won't have the pain and pressure that go along with it either.

I keep watching her response to noise and sound now that she has the tubes in place. I may be dreaming, but it seems like she hears better. I obviously don't know this for sure, but her musical VTech toys are sure catching her interest more. We'll just have to see!

Today begins the process of wearing the STARband helmet. We took yesterday off because of the procedure. By Tuesday, she will be hearing it 23 hours of the day, only taking it off for an hour for bath time. We will need to watch her head at that time and check for any red spots where the helmet may be rubbing too much. This is going to be a challenge with all of her hair. If the spot doesn't fade within 45 minutes then we will need to call the doctor and have them look at her. They will make the necessary adjustments on the helmet as her head changes and molds. I imagine it is somewhat like braces on kids teeth. They constantly change and need adjustments.

I did join another Yahoo support group that deals with positional plagiocephaly. I know that I will gain lots of knowledge from these people. It has so many members. This has become quite an issue for some kids due to the "back to sleep" campaign to reduce SIDS.

My 1p36 Support Group was having some interesting conversations lately. I'd like to fill you in on a few of the issues. One was on STIM's, short for self-stimulating behaviors. Some of the kids tend to bite their fingers and hands or flap their hands for whatever reason. It has been noted that many of our 1p36 kids enjoy opening and closing doors, drawers, and books, turning lights on and off, and sometimes rocking themselves as a soothing technique. Each child is unique, but I found this interesting. I do notice that when I feed Alayna she often takes her left foot and moves it back and forth. We'll have to see if Alayna does any of these things or develops her own unique behavior. Just something to put in a file in the back of my mind!

Another topic was on tears. A parent of a 10 month old asked if any of our children produced tears. I guess I hadn't really thought about that and neither did they until the pediatrician asked them. And I can say that I've never noticed Alayna actually having a tear "falling" or "rolling" down her face. But Alayna rarely cries. When she has cried in the past her eyes may have gotten moist, but not teary. Alayna only cries if she is really hurt or something is really wrong. This seems to be a trait of our 1p36 kids. Alayna tends to whine and fuss when something isn't right, but not cry. I think many of our kids are very low key and show little to no emotion. Now some of the parents of the older kids said "Yes, they do produce tears." Maybe it is also a delayed thing. We'll just have to watch Alayna and revisit this topic again. It is really interesting to me.

Her STARband Orthoses Has Arrived!

"This isn't going to keep me from moving around and rolling onto my tummy!"
"I'm not sure what and why this thing is on my head?" Visit http://www.orthoamerica.com/ and link to STARband Cranial Remolding Orthoses to read more about it.

I wanted you to see what the STARband looks like. I'm not trying to be cruel to Alayna!
Each side has a cut out for her ear. It does shift a lot because it has gaps where her head should grow and form into. This is the velcro strap that holds it on. There is a small piece of styrofoam in between the two pieces to make sure it isn't over-tightened.


"See my tongue!" Alayna has begun to stick her tongue out and sometimes on command. Patti, her sitter, has been working with her and she performed this new trick when I picked her up today! Yeah!!
Of course she is so sweet and her smile is adorable.

Well, it has been another adventurous week and Alayna continues to educate everyone she meets. It is amazing how interested some people become when they meet her. And at this time, I'm glad to share Alayna's history and story for her. Someday, she'll be able to talk and tell it herself. I truly believe that. I admit it is really tough sometimes. Last week I had a day where it seemed a black cloud was following me and I questioned God for making his choice in picking me as her mom. But, when these times come around, I find the most strength in my faith and in Alayna and we keep rolling right along. Here are a few "glimpses" of Alayna's week. I hope you enjoy!


ALAYNA IS NOW ROLLING FROM HER BACK TO HER TUMMY!!!! This is a major milestone for her and we couldn't be happier. If you put her on her back, she isn't there for long. It is only the beginning stages of mobility, but that is a huge accomplishment. Mobility is something that just doesn't come too easily for 1p36 children. We'll take any kind we can get! Alayna still needs to learn how to roll back over and how to get her head and neck off of the ground more. All of that takes upper body and arm strength and that is also continuing to develop. She'll get there!


ALAYNA IS HOLDING HER RATTLE AND PLAYING WITH TOYS!! Until recently, Alayna hasn't really shown much of an interest in toys. However, now she will hold her rattle and rings for quite awhile and hold them up and look at them. Yes, unfortunately she still beats herself in the head with her rattle, but that's where the STARband will come in handy!


ALAYNA GOT HER STARband HELMET TONIGHT!! I'm excited, but I don't think she is as excited as me. Well, I guess "excited" may be a bit of an overstatement. But compared to everything else we've been through with Alayna, putting a helmet on her for a few months is minor. Dana and I are completely committed to keeping her on the schedule and hope she can stop wearing it by May. I look forward to her having a nice round head someday. She has what is called positional plagiocephaly. In fact, I may have to join another Yahoo support group for kids with exactly this. It is one of the largest support groups for children on the Yahoo site with nearly 4,000 members. Can you believe that? It is more of a common thing than I realized. And it isn't occurring with just special needs kids. It affects normal kids just as often. It's not the most stylish thing to wear, but I'm sure Alexis will have an idea to decorate it with stickers soon. Maybe we'll just decorate it with stickers for the current holiday! She'll be wearing it 23 hours a day by Tuesday. I'll keep you posted with how it progresses.


ALAYNA IS GETTING TUBES IN HER EARS TOMORROW AND AN ABR HEARING TEST!! I'm not too excited about this because she has to be put under with gas. But she has done it once before. I'm saying my prayers that the tubes will help prevent more ear infections and that she has good hearing. We have to be in Iowa City tomorrow morning by 6:00 am. UGH! She is the youngest patient tomorrow, so she goes first. That will actually be a good thing so we can hopefully maintain her eating schedule. I'll let you know how this goes too. Say a prayer and wish her luck.