Oh, The Teething Continues & Her 1-Year Checkup!

Alayna has a smile that I just can't take enough pictures of!
For one reason, to get her to smile takes some work right now. Her teeth are causing quite a bit of discomfort.
Here is her serious look. She was enjoying the helmet off while she got a change of clothes. Just a little helmet hair to contend with....we are getting used to that!
See my teeth! I now have 4 teeth on the bottom and I'm working on another 4 on top!
Alayna loves to be kissed on the neck. She usually smiles every time.

Alayna has eyes that remind me a lot of Douglas. They are big and round.
New stickers! Now I am showing off kitties and doggies and my mom put my name on the back.
We love you Alayna!!!

Alayna is still teething and they are giving her quite a battle. Her top teeth are vicious and she whines quite a bit about them. We use Baby Orajel frequently and she responds to it pretty well, but they feel painful when I rub it on. I have to be careful where I put my finger too, she bites! I found out the hard way when she wouldn't let go. OUCH. I wish she could hold a teething toy herself, but she can't. She uses her fingers and hands instead and I'm not sure that is such a good thing for her. We try and hold a cold teething ring for her when we can. So, that battle continues on. Hopefully all of the top teeth will pop through soon.

Because of her teeth (I think anyway) she hasn't taken the pacifier for about 3 weeks now. This may be a good thing because sometimes these kids hang on to if for too long and it is difficult to take away. I'm just waiting to see if it is really the teeth and if she will even want it after they come in. She continues to be a very easy-going little girl who just closes her eyes when she is tired. She obviously doesn't rely on the pacifier to go to sleep, so it hasn't been an issue at all. Alayna loves her blankets though and prefers to have one when she naps or sleeps. She likes to hug it and sometimes puts it over or on her face. All of my other kids still sleep with their "blankies" and I'm glad they all had something to attach to and provide them a sense of security.

Alayna visited her pediatrician, Dr. Neptune, last Friday. She is about 29 inches long and that puts her on the "normal" growth chart at the 50th percentile. However, she is only weighing in at 17 lbs 13 oz which puts her at the 3rd percentile. None of us are too alarmed by this, even though I was a bit shocked to not see 20 lbs on the scale. I really thought she'd be close to 20 lbs. Anyway, parents of 1p36 children have said over and over that kids tend to stay at the same weight or gain slowly at times. Alayna is eating and that is what is important. She will grow at her own rate and it isn't necessarily fair to chart her on the "typical" growth chart. Alayna has been sick a few times over the past month with respiratory issues and an ear infection and of course, cutting those teeth. Her eating has not been as consistent as it usually is. She has lost a bit of weight and those things may be the contributing factors in addition to her increased therapy and workouts with Patti and her growing about 3 inches in 3 months! Overall, she is healthy and doing well. She got two shots and took them like the trooper she is! Drake was along for the visit and he couldn't believe how well she did. He even said that he'd probably cry more. Alayna fussed a little, but I told Drake that shots are nothing compared to some of the other things she's been through....piece of cake!

Yesterday, I tried to take her to JCPenney's to get her picture taken. I've yet to take her 1-year photos and we missed Christmas because of her being sick. Well, let's just say I'll try again in a few weeks when the other kids get their birthday pictures taken. She was fussy and not feeling well because of the teeth. They did get some cute shots of her on her back and I'll try and share them when they come in. Photos are difficult because she can't sit up on her own and the studios don't have many options for kids who can't sit up. And she isn't good on her tummy quite yet (getting better though). We tried a chair and she arched her back and slid down on her slick dress. We tried sitting her on a boppy pillow and propping her up and that didn't work either. Next time I think I'll take a bean bag and see if they could use that. I need to be more creative to make this easier on Alayna, the photographers, and of course myself!

Alayna continues to progress. That is the most wonderful blessing of all. Unfortunately, there are some kids out there whose progress is little to none at all. My heart goes out to them. We are so hopeful for Alayna's future! Alayna enjoys going to Patti's house and recognizes her instantly and smiles back. And Patti's little dogs continue to protect Alayna and provide therapy of their own kind (running around, barking, etc). I will try and get a picture of Patti with Alayna and maybe even Baxter and Scooby too (those are the dogs)!

Alayna is still doing well wearing her helmet. We change stickers about every couple of weeks which is a lot of work. Getting those little boogers off isn't easy even if you use GooBGone. I enjoy keeping it cute though. It has become part of the family! It requires attention just like everyone else. It needs constant cleaning and adjusting and goes with us everywhere we go. We get some looks when we are out in public, but nothing that has sent me into tears. Most people still look interested and simply give a little smile. Helmets are supposedly a common thing, but you just don't see many of them around. Alayna is so cute, she pulls off the look quite well. It is definitely working and changing her head shape. I might have said this before, but the most notable difference is on the sides of her head. The back of her head takes the longest. I have a feeling she may be wearing this a bit longer than what I hoped. That's okay!

It Was A Crazy Week!

Alayna really enjoys her 1 hour a day with the helmet off!
Her grin is becoming more "toothy." She is cutting another one on the bottom and about 4 on the top!

This position right here is actually a "reflex" that we need to try and break up. I can't say I completely understand babies development quite like the therapists do, but I've learned that the position she is holding is common for babies who have delays. I think that these reflexes aren't too bad, but they do somewhat get in the way of doing other things like rolling, grasping, etc.
Alayna has really taken to this frog she got for her birthday from Bella and Uncle Ron. If you squeeze its foot it "ribbetts" and she loves it! I think she enjoys its big eyes too!
Today, Dana and I got to attend one of Alayna's therapy sessions at Comprehensive Rehab in Muscatine. This is Kelly, one of Alayna's OT's. She was one of my students my first year of teaching!
Kelly really knows her stuff. Here she is stretching her arms up and then back down.

Sitting is a big issue for Alayna. In the beginning, she would get fatigued so easily, but Kelly has definitely seen a difference with that over the past few months. We have too! Alayna is getting so much better with her head control and when you pull her to a sitting position, her head doesn't lag behind as much and she can keep her head up for a longer amount of time. It used to drop within seconds.
Alayna has a few reflexes that seem to inhibit her completing a task like rolling over. As you can see, her arm gets stuck and that is because she isn't getting her arm up before she rolls over. And she prefers to roll to one side compared to the other. But this is improving too!
Practicing sitting some more! Kelly pulled her up from a laying position to a sitting position a minimum of 5 times and she was still holding her head pretty good by the end.
Hi mom! I guess I'll give you a look! We are so proud of you Alayna! She is doing a really good job of bringing her hands together at mid-line and keeping them together. She's beginning to enjoy playing with her hands and fingers. Hopefully grabbing objects and toys will be a milestone right around the corner.
Alayna likes to roll to her right side over her left. So this is a picture of the PT using a blue peanut to block her on the right and force her to go to the left. She will go to the left if that is the only option.

Hi everyone! Sorry for being behind on posts. This past week was very hectic. Alayna had been battling a cold since her birthday and last Sunday she would barely eat and she was extremely fussy and wheezing in her chest. She's the kind of kid that never cries and she cried a lot that night. She slept next to me and I got fearful that we were going to be heading to Iowa City. Alayna was very sick and I knew it and I took off work on Monday. I was up at the Pediatric Group walk-in clinic by 7:00 am that morning, but unfortunately her pediatrician doesn't work Monday's in the clinic. We had to see a different doctor that is unfamiliar to her diagnosis and she wasn't given anything but an oral steriod and we were directed to continue albuterol treatments. It's very difficult to see other doctors because they just don't know Alayna's history and no matter how hard I try to express my concerns and fears, it just isn't enough sometimes. I felt like I was repeating the visit we had prior to Iowa City.

Dana took her in the next day to see her pediatrician and she ended up having an ear infection and enough junk in the lungs to put her on an antibiotic. I don't know what was different from the day before? We continued breathing treatments every hour alternating water and albuterol. We even took the step as to calling the Pulmonary doctors in Iowa City to see if they could see her that day. They were swamped though. So, this week has been long with lots of interrupted sleep. I am beginning to think I have a newborn baby again. And I'm sure you understand that posting was just not the top priority this week.

But, I can say that she is doing much better. She is still a bit rattly in the chest and back, but she has some strong coughs now to help get rid of it. We got to her therapy session today and she did wonderful. I've seen so much improvement since Christmas time. I learn something new every time too.

Alayna also goes to the CTC tomorrow with Grandpa Denny and on Friday she has her 1 year check-up. I'll let you know how both of those go later this week.

She continues to make us smile each day. She just has this adorableness about her that we can't get enough of. We are so proud of how she is progressing. I still have the ultimate faith that she will get "there" someday, it'll just take a little more time.

ENJOYING A SNOW DAY!

Alayna took a nice long nap today. It was a perfect day to catch some zzzz's. Too bad Mom couldn't!
She was smiling a lot today! Alayna really enjoys being talked to; especially playing peek-a-boo and saying "I'm going to get you!"

Patti told me that the therapists are trying to get her to grasp things, including her blanket. So, we've been working on playing peek-a-boo with it and she does pretty well. She thinks it's funny!
Peek!
Where did she go?
Peek! There she is!
Can you see my 3rd tooth on the bottom? I'm getting ready to get in about 3 more. Mom can see them at the surface about ready to pop through.

This is how Drake and Douglas spent the snow day at home! They were in heaven. And it was nice and quiet inside the house!!!!!
Laying on one of the big piles of snow. They were trying to make a snow fort.
The picture is kind of fuzzy, but they were eating snow! I hope they remembered never to eat yellow snow!
Here they are with shovels while Grandpa plows with the tractor. Douglas said he was mowing the snow! He had every play lawn mower out today!
This is how Alexis spent her snow day. Playing Webkinz! Whatelse is there to do?? She enjoys it and so does her cousin Audrey. They even played together online a few times today. I do admit, that it is kind of fun. I admit too that I help her earn money and play the games. Dana likes to give me a hard time.

We really enjoyed the day at home today. I thought I'd take a minute and share some photos of the kids. Unfortunately, we had to get about 10 inches of snow to have the day off, but we'll take it! The kids enjoyed themselves and I enjoyed just relaxing and also catching up on the typical household stuff that never goes away!

Alayna is doing such a good job playing peek-a-boo. I really think she is catching on to the concept of it pretty well. This is a new thing for her and I'm so proud of her. I've also been signing "Mom" to her tons lately and then taking her hand and making her sign it. It's cute, but it always makes her smile. I've been signing "milk" too. I need to brush up on a few more signs and introduce them soon too. The reassuring thing is that she has good hearing and can hear us say these words. It all plays a role in speech someday. It's known that speech is significantly delayed with our 1p36 children, but most do talk eventually. That first word will be priceless.

Today was supposed to be her 1 year check up with her pediatrician, but we cancelled due to the weather. I was not about to venture into East Moline. We had to reschedule and we couldn't get an appointment until February 22nd. Those appointments sure fill up fast. She seems to be over her cold from this past weekend. I think she is cutting more teeth because her gums are pretty inflamed. She continues to roll and is going from her tummy to her back more often. Her helmet does get in her way sometimes, but she is trying her best to work with it. She still doesn't go very far and right now I hate to put her on the floor too much because of it being so cold. We are still working on getting those upper body muscles stronger. I can't wait for the day that she really uses her arms and pushes her chest off of the ground. We also continue to work on strengthening her neck and sitting up.

Our life continues to be blessed with good things. Alayna continues to make me look at my life differently and I do a lot of reflecting. I'm so thankful for that. I'm sure you can all relate to a personal experience, like I can, where you were the one on the outside looking inside. Maybe you even felt like the door had been slammed in your face again. And sometimes that doesn't feel too good and you may feel alone or hurt. But ultimately, the hope is that your character sees you through and is strong enough to battle the storm. I hope that as Alayna's mom I instill that solid foundation of character in her that allows her to stand up for herself and be the person that she is. I want her to be able to weather any storm that comes her way. She may be uniquely different, but she deserves to be treated just like everyone else. Isn't it strange how some things come full circle?

MY 1st BIRTHDAY PARTY - Round Two!!

This is me at my party with the DeKeyrel's! I'm sitting on Sherie's lap. I'm the princess again!
Grandma Billie helps me with my presents. Actually, I just watched my mom open them.
This is me with my "almost teenage" cousin, Lindsay. Her birthday is coming up soon too! She is soooo sweet.
This is me with Lindsay again and one of my favorite cousins, Collin! We just love him in that leather jacket.
This is me with another one of my cousins, Madison! I was so glad she could come.

This is me enjoying some time with Sherie!
Here I sit (and kind of grin) with my Great Aunt Peggy and Great Uncle Darrell! They care about me a lot too!
Here I am with another favorite cousin, Matt and my great friend, Juli! I missed Mitchell and Mason, so I hope they can come over soon.
Here I'm getting hugs from my beautiful Aunt Danette and my sweet Uncle Gary! They care about me tons too.

This is me and my Grandma Billie and Grandpa Richard. They are two of the best grandparents I could ever ask for!
This is me with my sweet Great Aunt Dixie and my crazy Great Uncle Bob! They also care about me a lot!
This is me with my beautiful Great Grandma Alice. Doesn't she look great! Alice, we love you!
This is me getting tired and frustrated on my Great Aunt Maxine's lap. She held me tight and put me to sleep!! Thank you! I just wasn't feeling too good all night. I have a bad cold and a stuffy nose.

First of all, thank you to each and every one of you for coming to Alayna's party. It was a nice way to celebrate her first year. Family means so much to us and spending the evening with all of you made her birthday extra special. It is apparent through actions and words just how much all of you care about Alayna. We are very blessed to have the families that we have. It is difficult to express in words the gratitude and support we feel from everyone. And for those who were not at the party, we still thank you for your birthday wishes!

Alayna has come down with a cold. This all began at 2:12 am on Friday morning! UGH, just in time for the party. Friday was a tough day to get her to eat a bottle. Fortunately, she drank some for Patti because she might have had 1 ounce the entire night here at home! She is battling the stuffy nose and just feeling cranky and unsettled. We couldn't get her to eat. Even with all of this though, she made it through the party and was a trooper the entire night. We just didn't do the cake thing because she wasn't up to it! I can't wait to see what she does with her cake at her 2 year party!

Alayna was blessed by recieving many gifts including a princess bank, a princess blanket, lots of outfits, a Shining Stars pink bear, an heirloom bracelet, and money to put away in the bank for something important in the future. We still aren't sure what that will be, but we are so thankful to be able to start her a savings because we know there will be things she will need. A huge thanks to everyone again.

Now that the parties are all over and she is officially one year old, I still find it hard to believe! Wow, time flies and what a year it has been. She continues to make progress and do new things. She is beginning to do additional occupational and physical therapy at Comprehensive Rehab in Muscatine two times a week for 40 minutes each session. Again, we can't thank Patti, her babysitter, enough for her willingness to head up this task! 80 minutes of therapy is a lot for Alayna to accomplish in one day, so we'll see how it goes. If she gets tired and so fussy that the therapists are unable to work with her, she just might have to quit early. They would ultimately like to see her Monday-Thursday for one 40 minute session each day, but right now that is a huge committment that I hesitate to jump into right now for a variety of reasons. But Patti says that she has noticed some improvement and I'm thrilled about that!

I'll continue to keep you informed about Alayna and all of her accomplishments. Thank you for your continual loyalty to her blog.

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.