Sensitivity to Sunlight

Cool! I'm headed to Lexi's softball game!
Go ROCKET FIRE 10 & Under Team!!!
I just had my bath and I'm giggles. I get that way when I'm somewhat sleepy.
Her hair is so cute pulled to the side. I can't wait for the day I can take that STARband helmet off for good. An hour each day is just enough time to tease her.

Showing off my new velcro on sunglasses! I'm ready for the outdoors now!
Still giggling...mom is playing itsy, bitsy spider with me and I smile every time.
Trying to keep my smile even though I hate the sun in my eyes.
Smiles behind the pacifier!

We all love to enjoy the spring weather and be outside, right? Well, I've found this to be challenging over the past year with Alayna. Last year if she'd see the sunlight, or any bright lights for that matter, it would trigger a sneeze. In turn, that would set off her gag reflex and then she'd even sometimes throw up her bottle. It wasn't fun to battle at all! So, we stayed inside more than usual all spring and summer.

One of my goals this spring and summer is to get outside more. Alayna still sneezes, but she doesn't throw up! Yeah. That was a huge milestone for us. I'm beginning to miss getting outside, playing with the kids, working in the yard, or just taking a walk up the driveway. The only issue still is Alayna's sensitivity to sunlight. It holds me back from being outside more. Last year was easier because she was in a rear-facing carrier on top of the stroller, but now she is in an umbrella type stroller and occasionally she gets the direct sunlight right in her face. She hates the bright sun and won't even open her eyes. She is unable to see the outdoors and look around at her surroundings. She's missing out!

After posting a "help me" email on our 1p36 support group site, I received quite a few helpful tips. Remember, the parents of 1p36 kids are truly the experts on anything. And they are always right there eager to offer help. Of course, I tried to use a blanket to shade her, but we all know that doesn't work 100% of the time and how much fun is that for her? So, one suggestion I got was velcro sunglasses. I've never seen them before, but I found them at Target and bought 2 pairs (one for a back-up). They are the coolest thing if I can get her to keep them on. Alayna is modeling them above. I'll have to put them on before the helmet though because otherwise they are not right up next to her eyes and the sun can sneak through. I'll let you know how she tolerates them. And the other suggestion was to buy an attachable umbrella for the stroller to provide additional shade. They supposedly have them at Walmart and Toys R Us, so I'll check it out when I go there soon. And I think we'll stick with wearing a Rocket Fire hat to shade her eyes as well. It is the only hat I've been able to find large enough to fit over the helmet and stay on. Cute little sun hats just aren't big enough and won't strap around the chin. Doctors are not sure as to why 1p36 children are so sensitive to light. One theory is their inability to produce tears, so their eyes are drier than normal which makes them more sensitive. Alayna doesn't cry often and she has never cried tears.

Alayna did go to get a STARband check last night. I was concerned that it was big and slipping a lot on her head. They tell me it is fitting just the way it is supposed to and that the flatness in the back of her head will take the longest. Since Alayna was older when she was put in it, she may have to wear it longer than expected. She just hasn't had a huge growth spurt that would cause her head to change too drastically. I plan to follow up in 4 weeks and see what their opinion is. Many people have told me that they have a flat head in the back too, but you would never know because hair disguises it. I'm happy with how her head looks right now, but if we still have possible potential for change, I'm not ready to take the STARband off quite yet. She's only been in it for 3 months now. I keep telling myself...patience!

I wanted to share this thought with you before I sign off for the evening. I often reflect about my life and I can honestly say that I knew I wanted children of my own from a very young age. Even when Dana and I planned to marry, we both agreed we wanted children. I remember the topic being brought up by our minister as he reviewed our marriage inventory we had to do for our pre-marriage counseling. I just never quite expected that I would have 4. It still baffles me every now and then. I might have visioned 2 or possibly 3, but if someone would've asked me 15 years ago if I'd have 4 children I would've probably said "are you joking?" However, I know now why I have 4 children. The answer is crystal clear to me. I never knew my own capacity of loving a child until I had Alexis, my first. I fell in love with her and I fell in love with children. This feeling is indescribable until you have your own children. I know parents reading this can easily relate. Yes, they are a challenge at times, but the benefits of watching them grow, watching them learn, and influencing their lives far outweighs the little negatives. Children are blessings.

Reflection On One Year Ago Today

Alayna has such an angelic face. I love watching her sleep.

She has a very tiny little mouth and lips.
Getting sleepy before bed and she is tired of me stalking her with the camera.
What a cute little pose....but that's about all of the cooperation that I got! Not one smile?
Big brown eyes!
Alayna is still teething and her little chin and sides of her mouth are red from all of the sucking on her hands and slobbering.

Sitting in her bumbo. She lasts so much longer in it - maybe about 10 minutes and then she gets bored and tired.
Thank you to all of you who leave comments on my blog. My mom loves your kind words and encouragement. They mean a lot to her and she reads every one of them.
Alayna still wants to keep her head looking down, so we use the sounds & lights to get her to look up. She likes watching the lights blink back and forth.

Okay mom! Maybe I'll give you one little grin....now leave me alone!

One year ago today, April 18, 2007, was probably the day that had one of the largest impacts on my life (and my families lives). I was still home with Alayna on maternity leave and we were getting ready to go to Muscatine Community College to visit Grandma Billie. The phone rang as I was getting ready to walk out the door. On most days I would've just let it ring to the answering machine, but something told me to go back and answer it. I'm glad I did.

Our genetic counselor from Peoria was on the other end. She informed me that they discovered what Alayna's developmental delays and health issues were contributed to. She told me that Alayna had 1p36 Deletion Syndrome. All I can remember is frantically grabbing a pen and scratch paper on the desk to write down as much as she was telling me and as fast as I could. I was speechless for two reasons. One, because I had no clue what she was telling me and two, because I knew this meant something was really wrong. My worst nightmare was coming true. A deletion syndrome? My mind was saying what the heck is that? I remember her words back to me were "you are handling this very well. Are you okay?" I was handling it well because I was in this state of shock accompanied with fear. What was Alayna's future going to be like? Will she be okay? Even the thought of losing her flickered in my mind.

I instantly called Dana at work and he, along with his parents, rushed right home. We did internet searches and read the computer screen through blurred eyes full of tears. Blinking to get them to clear was difficult because I remember them pouring out of my eyes with no effort. What we read was not comforting at all. Very little research was out there to look at due to the newly diagnosis of 1p36 kids. However, we did find a blogsite done by a father of a 1p36 daughter. It is now a link on this blog. That was the best site ever and we felt like we had hope and reassurance that things were going to be okay. (Thank you Nate) Now, if you ask me if I believed that then I would say no. But faith, love, and watching Alayna progress has me convinced now. It just took a little time.

The very next day, April 19, 2007 we headed to Peoria to meet with our "new" genetic doctor from Chicago, Illinois. He gave us some copies of medical journals if we wanted to try and read them and basically couldn't tell us anymore than what we already knew. He was a nice doctor, but it wasn't the most comforting visit for any parent. He just wasn't the kind of doctor you ever plan to have an appointment with. And hearing that he had never had another 1p36 patient before was not what we wanted to hear. From that day forward, we promised to do whatever we could to help Alayna develop and ensure that she continued to progress forward at the pace that she chose. Unfortunately, we absorbed ourselves into researching on the internet and it wasn't the best thing for us to do. We learned quickly that it wasn't going to help our situation by being negative and not having a positive outlook. We vowed to stay off the internet unless a medical situation arose and we put the information we had already read in the back of our minds in case of future use.

It was easier said than done. I went through a grieving process of my own for quite awhile. I had a broken heart. It was losing the dream that I had envisioned in my mind and played out over and over again. If you are a parent I know you can relate to what I'm talking about. Most days I didn't want to leave the house because I seemed to handle the situation better in my own little world. I didn't have to come face to face with the public, friends, see other children Alayna's age, and explain anything. It was comfortable and peaceful at home. However, I do remember a few rainy days were just the trigger to set off the tears. I learned that tears were okay and crying isn't a sign of weakness. But time does heal all wounds and my faith and family were my rocks.

It still seems unreal at times, but we have all come along way. Sometimes it isn't easy, but I'm proud to be Alayna's mom and I'm grateful God sent her to me. She has opened my eyes to another world that I was completely oblivious to. She has taught me so much about unconditional love, compassion, patience, acceptance, and overcoming challenges. My goal is to tell her story and educate as many people as possible about special needs children. I want to create awareness for our 1p36 families across the world. In fact, next Monday I am going into the Parenting class at the high school where I teach to talk about Alayna. The students just completed a unit on genetic disorders and the teacher remembered how I offered to speak about Alayna. I accepted her invitation without any hesitation. I'm honored to talk about my daughter. One year ago today, my outlook for Alayna was clouded, unclear, uncertain, and full of fear. Today, it is a completely different story. I have nothing but hope and certainty that she is going to be just fine. I now have a new dream that plays over and over in my head. She will be the person God intended her to be and I'll love her every step of the way.

April 18, 2007 will be a day embedded in my heart and mind forever. God has blessed me and I hope he blesses you too. So here's to NEW DREAMS!

Lots of New Happenings!

Here is Alayna in her new rear-facing big girl car seat. She doesn't mind it at all!
Here is Daddy and Alayna ready for bed...both asleep on the couch. Can Alayna breathe?LOL!


I've changed the intro song on Alayna's blog. Thanks Michelle for passing it on to me. I've heard this song many, many times on the radio or wherever, but I've never quite listened to the words. It is a message that hits close to home. So listen as you read. Music is a neat way to express thoughts and feelings. Feel free to pass on other songs if you hear one that seems to "say it all."

It has been another very busy week here in the DeKeyrel household. As you can see from the above photo, we never get enough sleep and I didn't have time to take many new photos to share. Sorry, but I'll try to take more this week.

I have some updates I'd like to share with all of you. First, Alayna is now officially riding in a big girl car seat. We said goodbye to the infant carrier about 2 weeks ago. We do still use the carrier at home to prop her up every now and then because it is so convenient. Using the big car seat has been an adjustment for me and Patti the most so far. We are the one's carrying Alayna the most and taking her in and out of the car, to therapy, or to wherever else the other kids need to go. The challenging part of it is that Alayna isn't a typical kid to carry. Since she lacks strength in her core muscles she doesn't provide us much help. She gets floppy sometimes and she throws her head back and she just moves everywhere. Don't get me wrong, she is getting much better!!! I've seen a huge difference in the past month, but it is still hard at times. For longer visits somewhere we resort to using the umbrella stroller.

Therapy is going awesome. We are so thankful for Comprehensive Rehab to be in Muscatine. Not only is it close, but they work her hard! I love hearing that because she is progressing so well. Her OT and PT are happy with how she is doing and are really focusing on the sitting. And one thing I have to remind people of is when they hold Alayna, don't hold her like a baby. It is so easy to just cuddle and swaddle her, but we need to make her work and sit and hold her head up. Right now we are also working on her kneeling and use a "peanut" for balance or I just use my leg. Last week Alayna sat for 29 seconds! That is a long time if you think about it. I hope we can get a sitting picture at a studio soon. We are also working on putting Alayna on to her side and doing "elbow" time. She doesn't enjoy it too much, but does better if she has a musical,light up toy to watch. The "sounds and lights" toy is a lifesaver when it comes to therapy and getting her to stop fussing and stay focused. She loves it! Comprehensive Rehab has one and we have one here at home. It really helps to get her to look up and hold her head up. Alayna continues to roll from back to tummy and tummy to back. Occasionally, she still has a hard time when her arm gets stuck underneath of her. I do think that when her helmet comes off she will do much better. It's a distraction and it's cumbersome. The developmental therapist will be coming soon to show us more techniques for play time. We are working on a good time in the day for that appointment. It's tough squeezing all of the therapy into limited hours.

Alayna is eating well, but I sure do wish she' d try "table" food like crackers and bananas. Texture is definitely a big issue right now as well as realizing how to move food to the back of her mouth to swallow it. Most of the time she just gags on it. Even if it is the smallest piece of something. We'll keep trying! I've given her a banana and a cracker in a mesh bag feeder, but I have to hold it. She did pretty well though, so that is a start. Alayna still enjoys baby food and her bottles, so we'll stick with all of that for now. I have to remind myself to be patient for everything.

Alayna seems to be starting to use her tongue more to make sounds. It's been kind of a hit and miss thing. Most of her sounds so far have been what I call "internal" sounds where no air comes out. I really think that some of these new sounds she has been making are something we can eventually work with! Yeah. I keep doing signs with her like mom, dad, more, and eat. I don't think she understands any of them, but when I sign "mom-mom" she either smiles or laughs. I'll keep doing them. Repetition is the key and eventually it will "click" someday.

Something we are beginning to see is how much Alayna puts her hands and fingers in her mouth. I know she is cutting teeth. It's obvious by looking in her mouth and seeing all of them coming in at the same time. But she will put her hands in her mouth upon frustration too. She prefers to suck on the part between her thumb and index finger. We are trying hard to either divert her attention to something else, put in the pacifier instead, or just pull her hands away. She has made a small callous on one of her index fingers and has a bite mark on her thumb. Many of the 1p36 parents informed us of this challenge at the Florida conference last November. Their advice was to just stay on top of it and hopefully they will overcome it. Oh, another thing I do is pull her sleeve down over hand because most of the time she can't figure out how to uncover her fingers. At least it is a barrier.

Our 1p36 support group on Yahoo has been growing with new members. Over the past few weeks, we've had many new members because of more children getting a diagnosis. Some of the children are under a year old, but some are 2-3 years old or older. Dr. Shaffer's efforts are paying off. The medical technology is there and it is the answer to many parents questions. One family in particular is from Normal, Illinois. They too have 4 children and their youngest is 3 years old and has been diagnosed with 1p36. They are so close to us and I really hope we can meet each other someday soon. Dana and I both graduated from Illinois State University, so we are way too familiar with that area. I know we'll be in that area this summer for Lexi's softball, so I'll make every effort to try and get together with them. Our support group is so valuable to us that it is hard to express that in words. And I appreciate those members who check Alayna's blog and for their encouraging messages.

Alayna continues to be so cuddly. She enjoys being held and I enjoy holding her. I look forward to the day where she reaches out to me when I go to grab her and I look forward to the day she hugs me back. Okay, and I can't wait until she can give me a big kiss too. We continue to enjoy our little angel. Learning is an ongoing process for everyone no matter what the situation. Alayna continues to play a big role in our families learning. Keep checking the blog for updates and thank you to those who always leave us a message. We read all of them!!

A Very Busy Week!

Alayna's cousins, Audrey and Will, went to Disney World over Easter and brought back her first pair of Mickey ears!
Aren't you going to smile Alayna?
Alayna's hair continues to grow and it is crazy! This is what it looks like just out of the tub with no bow or helmet. Hey wild thing!!
I'm sleepy after getting ready for my sister and brother's big birthday party for this evening. Oh my!

On the go all of the time. She lives in the car seat.
Getting ready for bed.
Me and my big brother Drake! He loves me tons.

Happy Birthday to Douglas on March 18th (4 years), Alexis on March 30th (10 years), and Drake on April 10th (8 years)!!! It is hard to believe how big they all are getting.

The past week has been very busy for us. I'll try to give you an update. Besides celebrating three birthdays, Alayna came down with pink eye and clogged tubes. She just wasn't eating her bottles very well. She'd spit the formula out and would literally soak one burp cloth each feeding. She has this unique way of "spraying" it out. I think she may become a professional gleeker someday! I thought she had an ear infection. So, I started putting the drops in her ears also hoping that would clear up her "goopy" eye. It got better for about a day and we then decided to run her into the pediatrician. Both of her tubes were clogged with wax. The drops weren't even making it through. Fortunately, she didn't have an ear infection, but the wax must have been causing her some discomfort or pressure. We started eye drops for pink eye too. How she got that is a mystery. All I can say is that she rubs her eyes a lot.

Alayna has made the official move out of the carrier to the rear-facing car seat. She doesn't mind it at all, but it's been tough for us who have to carry her everywhere. I find it the most difficult when I have to put a jacket on her, me and Douglas and hold her at the same time. Today we are venturing out to Walmart. I hate to say this, but I'm going to resort in using one of those carts with a carrier on the top. I promise to take a wipe and disinfect it first okay! We are all still working hard on getting her to sit up. Patti took her to therapy this week and on Thursday she sat two times for 9 seconds. If you count it, that's a long time for her! Yeah Alayna, we are proud of you.

We are doing the "airplane" more now to strengthen her neck, legs, and back. That was a suggestion by her therapist. She likes to fly towards her brothers. They make her laugh. Alayna still enjoys her swing so much. What am I going to do when she outgrows it? We'll have to move on to something else. By that time hopefully we can go outside and prop her up in the baby swing on the swing set. Alayna continues to roll back and forth. She can change her position on the floor pretty well. I'll put her down under the sounds and lights and before you know it she is out from under it and laying a totally different way. Last night was the first night she woke me up at 4:30 am fussing because her leg was stuck out the side of the slats on her crib. I'm glad to see her mobility is improving.

A developmental therapist through Early Intervention should be calling me soon to set up a time to come and visit Alayna two times a month. She is going to show us and Patti some techniques on how to "play" with Alayna. Alayna is definitely more interested in toys now and will reach for things. I was so happy last night because she was sitting in her high chair and playing with a musical toy. Every time she hits the button it plays music and then stops. She'd hit it again and it would play and stop. She got to giggling because she made the connection that she was controlling that and doing it! It was awesome to see her finally understand the consequence of that action. She did it for probably 10-15 times! Yeah, Alayna!

Alayna continues to play peek-a-boo with the blanket. She enjoys playing the "Itsy Bitsy Spider" and reacts with smiles! She loves her baths. We are working on finding her feet. I think she is getting it slowly that those things are hers. She finds it funny when I make her grab them. Her head is looking so great. I plan to take her in this week for a check-up, so I'll let you know what her doctor says. In May, we will follow up with neurology in Iowa City, so that appointment needs to be made. I hope we can take her off of the phenobarb. In my heart I know she is seizure free. And the yearly 1p36 Conference looks like it is going to be in Boston, MA. We just aren't sure when yet. I hope we can make it.

I will try and post again this week. I need to take some more photos and catch her smiling.