Lots To Catch Up On & A Heartfelt Message

Alayna can tolerate sitting in the bumbo seat for 10-15 minutes easily. Okay, as long as she's in a good mood! Teething is interfering with many of our fun activities and I can't wait until they are all finally in.
She loves watching the lights flash on the toy gym. It keeps her focused for awhile and forces her to control her head and neck.
Now she's pooped and crashed on the floor!
Alayna is really interested in people's faces. If you get close enough, she'll touch you. And you may just get lucky enough to get a wet, slobbery hand! The kids love that (just kidding)! Douglas loves talking to his little sister and loves getting a reaction out of her.
Alayna loves Lexi! She is like her little mommy and I think Alayna knows that and feels so comfortable with her. Again, Lexi loves to be smiled back at too and loves to make her giggle.

Proud big sister Alexis with Alayna.
Our two beautiful girls! We are so proud of all of our kids. The truly bring joy to our lives.
I look at this picture and think "what is different?" It's Alayna helmetless. I can't wait until we can finally take that off! But not yet.
Smiley Alayna. We've been battling a watery, red eye for about 3 weeks now. We've tried eye and ear drops, but I really think it is associated with her teething. Some days it is good and some it is worse.
I'm sad to report that the swing is "slowing" down a little. Seriously, Alayna is getting a bit big for it and the swing itself is slower due to that. But we will use it until it works no longer!!! She loves the movement. She sleeps in it, plays in it, smiles in it, kicks her legs in it, and looks around in it.

Wow! This is the longest span of time for a new post in a long time. This time of year is crazy for our household because of all the kids activities (softball and baseball) and me trying to wrap up the end of the school year at work. I've had tons of papers to grade and just something to do every night. Literally, I don't sit down until I go to bed. There is always dinner to fix, dishes to be done, laundry to do, school work to finish, bottles to wash, bags to pack, and oh my the list goes on and on. But, the kids have 2 more days of school and I have an institute day and we are done for the summer! I fuel on the fact that I can throw away our daily "schedule" for a few months.

However, I do have to share that as I'm typing I glanced at our June calendar on the refrigerator and it has something written on it every day of the month. I'm a bit nervous because I've got therapy for Alayna 3 times a week to get to and I've got to find someone to watch the other 3 kids on these days. I'd be insane to try and take them with. Not to mention, Lexi starts the summer off with two weeks of College for Kids and Drake starts off with one week of basketball camp. So, our mornings for the next two weeks will still be earlier than what I'd like. This means I have to get up and shower and put on make-up which I could pass up all together. Oh well!

Alayna had her 1 year review with Early Intervention about a week ago. Overall, it went fine. It's tough to swallow her percentage of developmental delay when it is spelled out in black and white on paper. Prior to discussing anything we were given copies of the evaluations and given time to read them. I found it tough to read and I had to hold back the tears. The great thing is that she is progressing at a steady pace and in the progression that they like to see. She is going in "sequence" so to speak and making gains. All of the therapists (PT, OT, DT and Speech) made an evaluation and scored her using certain developmental tests/checklists. Some skills were difficult to score because she may overlap in the age ranges for that particular skill. The PT evaluation put her in about the 5 month range for development. The speech therapist put her at about a 6-7 month level for speech. In general, Dana and I both feel that she is at about a 6 month level and doing things most 6 month olds do, minus the babbling and cooing.

Early Intervention approved her having therapy once a week. Remember, before she was only going 2 times a month. So, PT will continue to be one time every other week and speech and OT will alternate the other two weeks. I'm glad to have Alayna going to the Children's Therapy Center once a week. She seems to be at a developmental burst right now and her interest in play and toys has increased. We need to take full advantage of that open window of opportunity to expand her skills. She continues to go to Comprehensive Rehab two times a week as well. Our weeks will be full of 3 days of therapy sessions. Again, I thank God for Patti, Alayna's babysitter, and Grandpa Denny for helping with this all through the school year. And I may be calling on Patti a bit this summer - hope that's okay Patti!

At this time we are battling the teeth. I can't believe how Alayna has seemed to get a bunch of teeth at one time. She is currently working on the molars on the top and about 4 more on the bottom. It stinks! Fussiness and not wanting to eat are the issues we've been faced with. Not eating can't be an option for her. She doesn't eat that much on a good day! We've befriended Tylenol for the last week and Baby Orajel. Also, with her teething she usually gets a watery, yucky eye. We visited the pediatrician about a week ago and did eye and ear drops for about 10 days. It has gotten better. It could be a result of cutting teeth or be a clogged tear duct. We'll keep our eye on it!

Alayna is as cute as a button. We love her and she is so lovable right back. Now, there are times that she absolutely refuses to be held and fusses so badly that there isn't anything you can do. Both Grandpa Denny and Patti have both experienced that and it isn't fun. Alayna has her moments too when she fights her sleep. I hope after her teeth come in we see Alayna in a better mood for most of the day.

Alayna is really beginning to grab and hold her bottle while you feed her. She gets pretty proud when she holds it all by herself. She is most intrigued by taking it out and putting it back in rather than drink it. She also likes to bite down on the nipple and pull it out of her mouth quickly to make a "popping" noise. And then she'll look at you and smile. She's funny!

I want to say thank you again to all of our family and friends who continue to shower us with support. It comes in all forms from phone calls, emails, cards, people asking how Alayna is, and of course, from you reading her blog. I mean it from the bottom of my heart when I say that we couldn't do this without you. We are 16 months into our journey and look forward to the many, many years ahead of us. (Alayna turned 16 months on 5-29)

My good days far out number my bad days. But this weekend has been exceptionally difficult. As most of you know our oldest daughter, Alexis, plays ASA softball and enjoys it very much. I enjoy both watching her play and socializing with the other parents. I've missed more games than I've actually seen this year. They are always played on Tuesday nights and Saturdays and Sundays and this weekend she played 7 games. I witnessed only one of them while dealing with a little one cutting teeth and hating the sunlight in her eyes. It was hard to enjoy the game. I get sad when I have to get the "updates" through a text message. So, I'm battling with the struggle of what to do. I have one side that so wants to support my oldest daughter and be there for her and the other side saying to just stay home because it makes things tons easier on my younger one (and me too).

It's difficult to express the ups and downs of raising a child with a disability. What I'm battling the most right now is the fact that I have a 16 month old that can only do most things a 6 month old can do. Thus, this limits our "freedom" in a way and makes outings a bit more challenging. For example, an activity like planting flowers outside would be much easier if she could sit up on her own or even tolerate the sun. Everything has to have a plan and I'm learning to adjust to that.

You know when you raise a "typical" developing child, things progress at a steady pace and things just get easier, pretty quickly. And you get just the right amount or "taste" of each little phase they go through and then it is off to a new phase. Well, I feel like I've been raising a baby forever and I get frustrated because I want to know when things are going to get easier. I'm ready to move on to a different phase. Don't get me wrong, I still have all the faith in the world that God is with us each step of the way. But I'm human and I have every right to cry and shed a tear now and then. And some days it is much easier to do than on others. No one said it would be easy and it definitely isn't at times.

I was doing some searching on the web last night and came across a book titled "More Than A Mom." I plan on purchasing that soon and I'll let you know how it reads. It has wonderful reviews and at this point I'm "thirsty" for any knowledge of what other moms raising a disabled child go through too. It can feel like a lonely place sometimes. So, I urge all of you to support anyone you know who may be going through the same thing. Behind the smile there can still be a little heart ache.

May the Lord lift your spirit, encourage your heart, build your faith, and brighten your day.

Climbing That Mountain Together!

Alayna is all smiles lately! Okay, maybe at times she isn't. This little outfit was from the Whisman family.
Sticking my tongue out! And yes, we are an Iowa Hawkeye family if you were wondering.

Just a swinging! She loves this swing. I don't want her to grow out of it.
She is cutting more teeth and always has a hand or fingers in her mouth.
This little outfit is from Grandma Diana and Lexi gave her the shoes for Christmas. They finally fit (size 2)
Most of the time Douglas can get Alayna to smile. She loves watching him. I think it's because he is still little and just silly. He says he wants her as a tractor partner and someday he's going to be big enough to give her a ride on the tractor. I believe him!

Eating an orange for the first time. Made her pucker a little!
She sucked that orange down to nothing. She loved it.
Lexi helps feed her a strawberry for the first time. She liked it too! I was just worried about being allergic, but she was fine.
She liked the strawberry, it was just more messy.
I have to post of picture of Lexi in her uniform. I'm so proud of her. Yesterday, Rocket Fire played a team that gave them a challenge. They were down by 1 run and it was the last "at-bat." Lexi was up and her team had 2 outs. She got two strikes. Uh, oh! But, she hit a double and knocked two of her teammates in from 2nd and 3rd and won the game. Way to go Lexi and way to go Rocket Fire!

Since Alayna has been off of phenobarbital, she has been showing her "true colors." She is much more emotional and expressive about her feelings. Which is a wonderful thing. When she's happy you know it and her smile still melts my heart. However, when she isn't happy you'll definitely know it too. Lately, it has been challenging to get her settled during some of her moments of anger, tiredness, or maybe teething pain. Sometimes there is absolutely nothing we can do to make her happy and it is nearly impossible to figure out what it bothering her. The best intervention is still the swing. It's tough though when we aren't home. So, I have been known to resort to a sucker. I'm going to buy a bag of dum-dums at Walmart the next visit. It's all about whatever works! The other night on the way home from Lexi's tumbling Alayna was crying and had been nearly the entire time. I caught myself with my hands over my ears a few times and I'm not joking. It was so cute because Douglas turned to her and said in the calmest voice, "Alayna, use your words!" He wanted her to stop crying so badly and just tell us what was wrong. Someday she will.

I'm still learning what the best accommodations are for her at the ball diamonds. She hasn't been liking the stroller lately and would rather just lay on a blanket on the grass. Yesterday, I used a huge golf umbrella to provide shade and she went to sleep. I actually got to watch most of one entire game with only a few interruptions from the boys! I think next I'm going to take the Pack-n-Play so she can lay out flat and put a blanket over the top. We'll see how that goes. It's tough sometimes, knowing that with a typical developing child I could just take her for a short walk, bribe her with some cheerios or fruit puffs and give her a sippy cup as forms of distraction. I would have more options to keep her busy. I just want to be able to watch my oldest daughter play her softball games. I'm human, I'm allowed to feel this way, and yes, I think it is normal to have these little selfish thoughts sneak up on me.

Alayna is moving around the floor more and also in her crib. She somehow rolls and scootches all different ways. She has also been sleeping more on her stomach/side instead of flat on her back. Alayna continues to grab at toys and shows more interest in them everyday. Her hands and arms are becoming more cooperative together. Dana was playing with her the other day and he tickled his nose to hers. She reached up and grabbed his face with both hands. Of course, Daddy melted and she once again captured his heart. It's these little things that mean so much to us. They are things we never would have thought about with our other 3 children because they just happened.

This Wednesday, Alayna has her year evaluation through Early Intervention. Her PT, developmental therapist, and speech therapist will all be doing an assessment and writing reports. We have a meeting scheduled for late afternoon and her therapists, Early Intervention coordinator, and Dana and I will be present. It's like an IEP meeting if you are familiar with that term. We'll review what goals Alayna has met and set new ones. Alayna continues to go to Comprehensive Rehab two time a week, but that isn't connected to Early Intervention. That is just additional therapy that we decided she needed on our own. I'm going to request for more therapy through EI and hopefully they'll approve it. I'd like to have Alayna going to the Children's Therapy Center at least once a week. I believe she needs it and again, I'm one of those people who thinks that there isn't such a thing as "too much therapy."

Alayna has really been enjoying fruit in her mesh feeder. We try to use it about 3-4 times a week. She has had peaches, bananas, oranges, strawberries, and mixed fruit in it and eats each one. Now, when I say "eat" I mean she does tons of sucking on it. Some of the fruit comes out through the holes, but most of it stays inside the bag to prevent choking. And she continues to eat about 1/3-1/2 a jar of stage 2 baby foods in the evening. There are nights though that we skip this all together because of either the mood she is in, timing, or that she hasn't drank her formula completely. It doesn't take much to fill her up. We've switched formulas to the Members Mark brand sold at Sam's stores. It is much cheaper and so far she is doing fine on it.

Sometimes things happen in our lives that makes us challenge our faith and create doubt. Trust me, with Alayna, this has happened. However, God tells us that he is here for us and will never fail us. I'm a believer and I continually pray to God to give me strength to get through each day. One day at a time. He sets mountains before us to climb. I am climbing this mountain and there's no stopping me. And so is Alayna. We will have our rough spots and our set backs, but someday we are going to reach the top together and shout from the peak. You'll see!

15 Month Accomplishments

Having fun eating and drinking!


I'm beginning to show interest in holding my cup. I just drop it and don't mean to.
Alayna loves this singing duck from Hallmark. She got it for Easter and she cracks up at it!
That silly, singing duck! It even moves its mouth and flaps its wings.

This is one of Alayna's favorite books. It has Disney princess buttons on it and plays music. It makes her smile too.
More practice with the cup. It's a Nuby cup from Walmart and she seems to be taking to it because of its soft spout similar to a bottle nipple.

Grandma Billie brought us some bean bags and this is one of Alayna's favorite places to relax!
Chillin' in the bean bag chair. She is beginning to pay more attention to the TV. I want to get some Signing Time videos soon for her to begin watching. We continue to try and get Alayna to bear weight on her legs. She can do it, but it only lasts seconds. I just don't think it has clicked that legs are supposed to be used to stand on.
Asleep in the bean bag. She is such a sweet little girl.

Alayna continues to make me smile everyday. She turned 15 months old this past Monday and I'd like to share some of the things she is doing. Alayna has been giggling much more. It is definitely becoming an easier task to get her to laugh. She has been taking phenobarbital since November when she had 2 seizures while in the hospital for RSV. Okay, I admit that I'm not a doctor, but I've weaned her off of it for over a week now and I've seen only positive side effects! I probably shouldn't have done that without consulting a physician, but I did anyway and her pediatrician was fine with that. So as of right now, the only medication we are using is Myralax in her bottles.

Alayna's current weight is 19 lbs 5 oz (with a diaper on). The nurse told me it weighs 5 oz, so I guess she's right at 19 lbs. She is 29 1/2 inches long. I didn't even bother asking where she fell on the "typical" growth charts because it is obvious she is on the lower end. However, Dr. Neptune was very happy with her growth and that she is eating and drinking. Her daily eating schedule right now is four 5-6 oz bottles of formula with 2 tablespoons of rice added to make it thicker and about 1/3 of a jar of veggies and fruit in the evening. So on average she is taking in about 20-24 oz of fluid each day along with some baby food.

I'm working hard at introducing the sippy cup. Upon recommendation by other 1p36 parents, I've bought the Nuby cup from Walmart because its spout is so similar to a bottle nipple. Alayna is drinking a juice/water combination out of it. She is doing well, however, she has figured out how to spit it back out again and not swallow all of it. The bib is usually drenched and juice is floating in the catch pocket! That is the frustrating part of it. I just wish she'd suck it and swallow all of it. But we'll get there. I've also seen a much better interest in the mesh self-feeder that I've tried to use before. The other night she ate about a 1/4 of a banana out of the mesh feeder. She seemed to enjoy it too and actually held onto the handle. She would drop it of course, just like the sippy cup, but we continue to work on that as well. Dr. Neptune suggested to introduce different fruits in it like pears, mangos, oranges, and anything else soft. I will let you know how that goes. And I might get brave here soon and use a food processor to try some table food like pasta or veggies.

Alayna is physically getting stronger. It is a slow process, but I've seen big improvements. Alayna sits the best when you assist her from the back side. I love to watch her sit and I try and face her to me. But, I have the best luck with her posture and sitting for longer amounts of time if I sit her in front of me, facing out, and use my leg as a support right in the lower area of her back. She loves toys that have sounds and lights and ones that move. Again, she sits best if she has something to look at that occupies her attention for awhile. The yellow duck in the above pictures and the sounds and lights toy gym are still the number one favorites to use. She isn't able to sit completely on her own just yet. She has no defensive reflexes and she tends to fall forward onto her face (thank goodness the helmet catches her fall) or backwards onto her head. We are trying to hard to put her hands down in front of her for support. One of the great things she is now doing is if she falls forward all the way, she will use her arms and all of her strength to push herself up again. YEAH Alayna!

Alayna continues to roll more each day. She is not staying in one place on the blanket anymore! She is finding out that she can roll in other directions and kick her legs to move around the living room floor and her crib. So, we've begun to spread the toys out a little bit further and try to get her to get them. Alayna has always kicked her legs since very early on as a self-stimulation behavior. She continues to do that. I'll hear her kicking and slamming her legs on her crib mattress in the middle of the night and when I go check on her, she still has her eyes closed. It's a way to soothe herself. Alayna still enjoys the baby swing. I dread the day she grows out of it. I think another few inches her toes will touch the ground! She loves the movement. It and the bean bag are the two favorite places right now to relax and sit.

I've been a little concerned about some bumps that Alayna had developed on the bottom of her legs and a few on her cheeks ever since she had the RSV. I've asked her pediatrician about them multiple times and he has made a few recommendations of what I could try. I most recently bought Eucerin Plus and it says it is clinically proven to relieve skin bumps often found on the upper arms and legs. These bumps are called "keratosis pilaris". After looking it up online, many people have them. Actually, some of my family members and friends have told me that they had them. They don't bother Alayna, but I'm willing to try something that will clear them up. The Eucerin just didn't seem like it was doing anything, so her pediatrician gave me some samples of Differin which is a topical gel used to treat acne. Sometimes it can cause more irritation, so I will watch her legs and discontinue the use if that happens. We'll see how it goes!

Alayna received two immunizations at her appointment. This is going to sound weird, or maybe even cruel to some of you parents, but I was so excited to hear her cry! Yes, she definitely felt the first poke and immediately stopped sucking her pacifier and started to scream. And then after poke number two, the pacifier came out and she was mad. If she was capable of producing tears, they would've been flowing like a river. I was so excited to see her so upset and realize that she felt that pain. It is known that 1p36 kids have a high tolerance to pain and sometimes don't have that ability to tell you what they are feeling. Our little friend, Whitney, even had a broken arm and didn't express any discomfort. During Alayna's previous vaccinations, she would fuss a little bit and maybe do a little squirming, but nothing compared to yesterday! She was crying so hard that she created an abundant amount of saliva in her mouth and throat and I thought she was going to choke on it. As I left the office smiling and pleased, Alayna cried the entire way to the van. It was a neat moment!

There is one more thing I want to share with you. Alayna loves movement and loves louder sounds and often enjoys being startled. Well, to get her to laugh or giggle all Dana or I has to do is yell "Douglas, NO!" Douglas is little 4 year old brother and he gets reprimanded often by us or hollered at by his older brother or sister. Douglas is a frequently spoken name in our house and I think Alayna recognizes it already. She's so funny. She loves to hear "NO." Okay, she is the little angel and she has already learned to take advantage of the moments she isn't the one in trouble!

I've added a few new links to some of our 1p36 friends blogs. They do a wonderful job of capturing these moments with their special little ones. Check them out! It is all about support and when we know we aren't alone in this endeavor, it provides us more strength to keep going. I love the title of Lily's blog, "Godgaveusyou.blogspot.com". Keep the faith.

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!!