We Are Heading to Indianapolis!

Alayna can finally grab her own pacifier with about 95% accuracy on getting it to her mouth! Anything helps and yes, it is a milestone in her book.

Sweet little Alayna right after an evening in the bathtub. She still loves it!

Alayna's sitting is so great! She can sit unassisted for minutes at a time. Sometimes she still will lose her balance, but she is more apt to putting her hand down to recover her fall. She is definitely getting it!

PT Update

Alayna has been improving so much over the summer. It's like stuff is finally "clicking." Whether it be from a simple thing like grabbing the necklace I am wearing to bearing her own weight as she stands at the couch it is exciting progress to brag about! At PT she has been working on standing in her AFO's and playing at a table and then even taking a few guided steps. She has been initiating the stepping a little on her own and even demonstrates shifting weight from side to side. We use knee immobilizers to help keep her legs straight and not allow her to bend the knees. It also helps free up our hands to work with her easier. I don't have a picture of her in those yet, but I will try to post one soon. In addition, her sitting has improved considerably over the past few months. She is becoming more aware of her arms and hands and being able to use them to stop a fall. Alayna lacks strength in her arms because she hates to be on her tummy and use them, but hopefully with the sitting it will improve. We keep trying to get her on all fours in a crawling position, but she doesn't like it at all. I'm beginning to think that she won't crawl at all. Maybe she'll be one to scootch on her bottom and walk instead!?

Eating and Drinking

Alayna loves to eat and she is getting better at it everyday. I no longer have to mash up macaroni and cheese or a noodle bucket with a grinder. She'll eat it the way it is! And she'll take it in by the spoonfuls. She is becoming an expert on using the sippy cup too. My only complaint is that we need to work on sitting it down nicely on the tray and not tossing it to the floor!

Sleeping & Napping

Alayna's sleeping has been pretty good lately. I can't remember the last time she was up in the middle of the night. She still likes to get up early every now and then, but it's not been bad. Her napping has improved because she seems to be getting on a schedule...finally! Her afternoon nap is getting longer and she'll usually sleep for 1-2 hours. It puts her in a much better mood. She is still not like most 2 1/2 year olds though. She naps frequently!

Indy....Here We Come!

On Friday, we are heading to Indy to the 3rd Annual 1p36 Conference to see our "extended" family. We are taking all 4 of the kids and both sets of our parents are going too. I am so excited to see everyone we know and to meet the one's that we don't know. There are about 35 families coming from all over the US and the kids range in age from 7 months old to 21 years old. Many of the kids are young like Alayna and so it is a nice opportunity to share ideas with others and learn from their experiences. It is such a valuable thing for us to have this support group. I can't imagine doing it alone with no one to relate to. I will definitely post pictures and a recap of our weekend when we get back!

More Pictures to Share!

Hanging out at Douglas's t-ball party!

Playing with one of her many favorite toys.

Working with Tiffani, her developmental therapist.

Tiffani liked how she was sitting and how she has begun to put her hand down on the ground. It's a step toward supporting her fall!

Crashed on the floor!

What a cute little face.
We love her smiles and giggles.

Alayna has been having a pretty good summer. And she has been a champ being toted from one ball game to the next! There have been a few rough days here and there. Sometimes her temperament isn't what I wished it would be and it's a guessing game as to what is bothering her. Some days we get through good at home therapy, but other days she just doesn't want to give it much effort. And that is sometimes frustrating for me because I know that repetition is the key for her learning and her whining doesn't provide for a very productive session. She still doesn't have her #9 and #10 teeth in yet and I'm eagerly waiting their arrival. In a few more weeks she'll celebrate her 2 1/2 year birthday and that is hard to believe. I hope to take her to the swimming pool later this week to see how she reacts to it. Hopefully I'll remember my camera and post a few pictures (crossing my fingers that it doesn't rain). Her sitting has really improved and her attentiveness to her surroundings has increased. Her sleeping has also been pretty good lately. Only once in awhile will I hear her kicking in her crib or fussing. She'll finally grab her own pacifier and put it in her mouth as long as she can find it! I've tried to get Alayna to nap during the day in her crib, but she just won't do it. She either plays or whines. Her favorite spot is a place on the floor near the TV. I guess I'll do whatever works! At PT last week she stood with her AFO's on with assistance for 15 minutes at a little table! It was cool to see her stand up straight and look around the bright, colorful room. She even initiated stepping forward and took a few steps with some guidance. It's wonderful progress that we love to see. That's all I really have for now! I'll post more later. Enjoy your summer.

Updates about "Miss Alayna"

I needed at least 6 arms during Alayna's first hair cut!

Holding the toy, the pacifier, the cape, her....aaaahhhh!

All I could do was smile and laugh! Alayna didn't want her hair cut. She wanted a nap!

More fussing.....

Wild thing!

Such a sweetie.

Stander time which seems to be really helping her bear weight!

Douglas and Alayna getting ready to head to the ball park!

"Mom, is that a ceiling fan?"

All smiles, but not directly at the camera.
She still doesn't make eye to eye contact all of the time and it's difficult to get her to look at the camera.
Alayna, hands out of your mouth please!
Now she looks and it's kind of blurry! Oh well!

Iowa City Visits

Cardiology

It was our goal to get all of Alayna's documentation from Peoria transferred back here to Iowa City Hospital. Cardiology is one of the last areas we needed to do this in. So, we headed to Iowa City a few weeks ago to check in with Dr. Reinking. We didn't expect any problems with Alayna's heart, but some of the other 1p36 kids do have heart issues to deal with and we feel it is best to be proactive. Alayna did have both a VSD and ASD at birth, but both healed and she was released from her previous cardiologist at about 2 months of age.

In Iowa City, Alayna had a chest x-ray, EKG, and a echo cardiogram performed all in a matter of two hours. She was really good during the first two things, but was really tired by the time the cardiogram was supposed to be done. All I can say is thank God for patient doctors and musical toys! The x-ray and EKG looked good, but when the doctor listened to Alayna he thought he heard a slight murmur. To be sure what he was dealing with he ordered the cardiogram. He got a good look at her heart and everything was just fine. We don't have to return to cardiology for 5 years! Yippee! However, if her pediatrician would have a concern or we notice her tiring out more than normal or sweating profusely, then we'll want to go back sooner. But I hope we don't have to. This was a great way to start off the day at Iowa City!

Genetics

This is the very last piece of the puzzle that needed to be transferred from Peoria as well. Our new Pediatric Genetic doctor is Dr. Sheffield. He took pictures of her hands, feet, and face and was very pleasant to talk with. He is definitely familiar with 1p36, but like he said we will probably teach him more than he can offer us. And like I've always said, the parents are the experts in this case. 1p36 is such a newly diagnosed and researched syndrome and there is still lots to be discovered. The plan is to check in with them every year or two.

1st Hair Cut

Alayna got her first hair cut at Kountry Kutters. Pam was so patient and I am so grateful. Alayna was tired of course by the time we got in the chair and it was all I could do to hold on to her, the pacifier, and a toy. She kept wiggling out from my arms. But we got the job done and now her lovely curls comb out much easier than before. Having all of that hair is beautiful, but such a job to keep untangled and nice looking.

Visit from a Virus

Alayna's youngest brother, Douglas, caught a virus right when school was ending. He had absolutely no symptoms other than running a temperature for 6 days! I took him to the doctor two times because I wasn't convinced that it was viral, but it was. Then Alayna must have caught the same bug. She ran a fever for 3 days and was as cranky as ever. Her appetite wasn't as good as it usually was, but she had no other symptoms at all. I always worry a bit more with her than the other kids because I'm afraid her issues will escalate into something else. So, I took her to the doctor as well. They poked her finger and the blood test also showed she was fighting off a virus. I shared this information with a few of my other friends and some of their children have recently gone through the same thing. Be on the watch for the this weird virus!

Therapy

Alayna's eating is continually improving. In the last few days she has eaten almost a full Eggo waffle and a huge bowl of macaroni and cheese! She really is getting the hang of chewing and when I tell her to "chew it" she gives me a big smile and thinks it is funny. Today at PT, her therapist was impressed at how well she would stand freely with her AFO's on. She needs some support still, but for her to keep herself upright is a huge accomplishment. We will continue to work on this and especially help her keep her knees from bending.

Summer Fun

We are enjoying the summer break and spending time with each other at home. Alayna has been a true joy these past few weeks (minus the time she had the virus) and I like the fact that she is easier to entertain and play with. She also continues to love to be cuddled and hugged and I enjoy that too!

Summer is Almost Here!

My brother, Douglas, loves me! And look at the dirt on his pants...ugh!

Stander time!

Look at that gorgeous curly hair! I love it, but it is so tough to manage right now. Alayna still wears a pony tail nearly every day. Tangles and more tangles.

Our pretty little princess wearing her Lexi's old teletubbies p.j.'s. Yes, I kept tons of stuff and it is wonderful.

Love the smiles!

Summer is almost here and we are counting the number of school days left! We are all very ready for a break from the alarm clocks and the normal routine. Alayna continues to grow and make advancements. And even though they may be small strides, they are huge to us.

This girl can eat!

First of all, boy can Alayna eat! She has made huge progress in this area and I'm thrilled. Here is a sample daily menu for Alayna: breakfast - entire bowl of oatmeal and a yogurt with milk or juice, lunch - vegetable, pudding and maybe 1/2 banana with milk or juice, snack - yogurt with graham crackers and finally dinner - vegetable, fruit parfait cup, 1/2 banana and milk or juice. Alayna's variety of what she eats is still pretty limited, but I was so excited to learn that she will finally take a bite out of a banana and chew it. It doesn't pop right back out anymore! She is doing a good job trying to maneuver it around with her tongue and keep it in her mouth. Last weekend she took a few bites of a grilled cheese and again I was so excited that I had to text Dana to tell him. Since she has been eating more she has decreased her intake on liquids and isn't as fond of her milk as she used to be. She'd rather have a bite of something! Her mouth is usually always open like a little bird waiting for her food. Alayna also enjoys eating banana-nut cheerios for breakfast. However, we have to put them in a baggie and crush them with a rolling pin. She can't eat them quite yet whole without gagging. We also use graham crackers a lot and smash them too. We add them to yogurt and baby food (fruits) to help thicken them and give them a different taste. She loves it!

Neurology Update

Dana took Alayna to Iowa City last week for a neurology check up. She hasn't had an seizures for quite a long time that we've witnessed anyway. The doctor said everything looked good and she recommended Alayna keep the same dosage of 45 mg of phenobarbital per day. We go back in 6-9 months. So, no news is good news!

Sitting and Standing

Alayna continues to stand in her stander each day for 30 minutes at a time. I admit that sometimes it is difficult during the work week and she misses her "standing" sessions once in a while. There is only so much time in a given evening and with 3 other very active, busy children our schedules are crazy. Alayna's sitting is getting so much better! She can initiate sitting straight up by herself and give those postural muscles a workout. She is also recognizing when she is falling backwards because she will laugh or smile and her expression says "oh, yeah I forgot to put my hand down." But she is definitely doing much better balancing on her own and playing with a few toys for longer periods of time. We are getting there!

Sleep and Teeth

Alayna went through another bad spell of sleeping awhile back. It was a bit rough right after spring break, but since then it has been pretty good. However, just in the past few days she has been waking up around 3-4 am crying. Poor thing. I do think it is her teeth again. The doctor told me they are like wisdom teeth and come up and then go back down. I put orajel on her gums last night, but the thing is you have to be quick and completely awake and on cue to do this. And at 3:30 am I was not! You see, she got me last night and bit my finger and when she clamps down she doesn't let go. Remember, she has no clue she is biting anyone. It's just an instinct to clamp down. And so, it turned into a waiting game of when is Alayna going to give me my finger back? Oh, I thought I was going to wake the entire house. It hurt and it still does today! Once I gave her some motrin and layed down with her on Alexis's bed, she relaxed and stopped crying. Thankfully we were only up an hour and both back in our beds by 4:30 am. Tonight she gets the motrin BEFORE bed!

The Untold Story

Alayna in the stroller at the ball diamond. She still does pretty well sitting in this particular stroller. I am glad we have the new Kid Kart, but my fear is taking it someplace and her not napping in it as well as she does this. She likes to wiggle around and sometimes turn to her side. I just don't see that possible for the Kid Kart. It's pretty restrictive.

Alayna sitting in her new wheels! I am still trying to get used to it before I get brave enough to take it out and about. I forget how to make things collapse.

It is very supportive for her back and nearly every other place on her little body. It straps around her waist and over her chest. It has feet restraints to give her extra support too. The seat can be removed and turned around to face the "pusher." It can also be removed and put on a spare set of wheels that we can use for indoor purposes. That's nice because we know the big wheels are bound to get dirty outside.

I'm really glad it has a tray that we can slide on if we want to. It's all about entertainment when we go places and hopefully this will help. It will also be good for when she goes to school.

Alayna standing in her stander again! I must say that having all of this equipment is great, but very overwhelming both emotionally for Dana and I and physically.

Playing patty-cake with Grandma Diana and loving every minute of the attention. Sometimes keeping Alayna happy is a huge challenge and it sucks every ounce of energy out of you.

Alayna sitting in the bumbo at the ball diamond. We have tons of games this summer, so she better get used to going!
She is a bit squinty because of the sun, but not terrible. I remember when the sun would make her sneeze and trigger her gag reflex and she'd throw up. Thank God those days are over. I do have wrap around sun glasses, but my guess is she won't keep them on anyway. I'll give them a try though.

The Kid Kart is Here!

We are very excited to say that the Kid Kart is finally here. It's probably going to be Alayna's way of mobility for awhile until that special time when she will someday take steps and walk. Even though we carry her most places still, it is nice to have. It sits high up and can be pulled up to a table when a stroller can't do that. It is very supportive and is therapy in itself. Thank you again to everyone who donated to her fundraiser. We used those funds to help pay for this. We really appreciate it.

The Untold Story

I feel compelled again to type another heart to heart for all of the blog readers. I'm going to call it the untold story. It's those happenings or feelings that we parents of special needs children deal with on a daily basis. It's those things that unless you have a special needs child you just don't quite understand completely. It's those things that twist your heart into knots. They most of the time are words that are never spoken out loud or actions that are not seen by others. They may simply be emotions that are not quite visible to others or thoughts that are constantly running through our minds. Sometimes they tend to take over our thinking and literally drive us crazy. And yes, I admit it, sometimes I wonder if I'm going crazy.

I've said it before. Raising Alayna has been the biggest challenge bestowed upon me in this 35 years I've been alive. I sure wish I could say for a fact that it's going to get easier, but I just don't know that. I worry ALOT. I worry about if there will come a day where I can no longer provide proper care for my own child. I worry if there will come a day that I won't be able to handle her or understand her. I know there are some of my 1p36 families feeling the same way and going through these issues right at this very moment. I worry about the future. I worry about school since her 3rd birthday is on the horizon and where the correct placement will be. I worry about how she'll get there. I worry about her coming in contact with more germs and viruses and becoming sick again. I wonder if she'll ever walk. I wonder if she'll ever speak. I wonder how other children will accept her. I wonder...I worry...I wonder...I worry. Way more than I do with my other three children.

I've come face to face with some difficult issues just in the past few weeks. One has to do with the fact that my three older kids love "little" kids and love playing with them. I watch them interact with typical children that are Alayna's age and I see their faces light up. I watch them chase each other, laugh, hug, and play. This is part of the untold story. I have to deal with the fact that Alayna is not the typical interactive 2-year old that my children would love to play with. The little two-year old that I envisioned my kids to have. It's heart-wrenching. The Kid Kart is another issue for the entire family. While it is beneficial, it is also very "medical" looking. Alexis made this comment to me: "Mom, you aren't going to take her to the game in that are you? Everyone will look." It broke my heart. Again, it's another part of the untold story that we must deal with.

Another issue our little family of 6 is dealing with is the emotional strain put upon everyone. Unfortunately, this includes our 3 older children. Our families "fuses" seems to be shorter, tempers are more likely to fly, and tension tends to build very easily in the walls of our home. There seem to be even higher expectations of our older 3 children than ever before. An overwhelming amount of energy is spent caring for Alayna's needs and even though we don't mean to, we can easily overlook the needs of our other children. It's not right, but in this situation is it too easy to do. Over the last few years, the dynamics of what we knew as a typical family have done a 180 degree turn and continual adjustments have to be made. And that is one of the more difficult challenges we continue to face. I just hope that in the end, our older children will understand what our family situation was and how we tried to do the best we could.

Alayna is still at the developmental stage that her care is very demanding both physically and emotionally. As an educator, summer time is usually a time of relief from work and a time to relax and enjoy. However, I'm dealing with emotions of feeling strapped to the house and more "tied down" AGAIN. I was spoiled by my first three children because when they all were 2 years old we were able to go and do whatever our hearts desired. Realizing that this part of it isn't getting any easier with Alayna is emotional for me.

We love Alayna very much. There is no doubt in that. But these are true emotions and feelings that come along with the territory. It isn't easy and I sure wish it was. It's tiring and sometimes my brain just seems fried. And I'll admit that there are days where I don't want to do it anymore. I want to quit and run away. Somehow though I strum up enough energy to keep going. I have to for Alayna. I have no choice. God gave me no choice.

Alayna's Angels

Crazy Chi-Omega's from Illinois State University.

We couldn't fit everyone in one photo, so here is the left side of the room too! Didn't want to leave anyone out.

Another group shot of some of Alayna's Angels!

Last weekend my Chi Omega sorority sisters held a fundraiser for Alayna in downtown Chicago. Oh, what a blast! Many of them still live in the city or the suburbs and with families and professions it was difficult for them to come back in November for the Quad City Fundraiser/Trivia Night. So, they decided they wanted to have their own fundraiser. They called themselves "Alayna's Angels" and they truly are just that. Dana and I feel so blessed to have such a supportive network of friends. I think I counted at least 26 Chi Omega's in attendance, plus their spouses, significant others, and friends. Some of them I hadn't seen since graduation day at ISU back in May 1995! And some of them were younger than me and I had never met them before. But they were all there to support Alayna and they expressed this repetitively through their kind words and gracious hearts.

The evening was filled with socializing, a silent auction, a raffle, and a 50/50 drawing. Many of us had our cameras and it was like we were back in college for a night. And for awhile many of us pretended that we didn't have any kids at all! We all enjoyed ourselves so much. I personally enjoyed just seeing everyone and catching up with what they are doing. And oh my goodness, between many of us we have tons of kids! We have lots of "little Chi-O's" coming up!

A special THANK YOU goes out to the main organizers of the benefit: Beata, Diana, Missi, and Kara. You all out-did yourselves and went above and beyond expectations. It means so much for you to have taken time out of your busy lives to plan such a special event to honor Alayna. And a huge THANK YOU to everyone who attended and made it a success. You are all very special people.

2nd Birthday Photos, New Ear Tube & Sleep Issues

2nd Birthday pictures taken at pictureme! at Walmart!

Alayna is fascinated with her left hand lately! She can be soooo sweet.

At most she'd give us is a 1/2 smile while looking at the camera. She'd smile, but never looking at the same time.
Of course we used the bumbo seat to help her sit and it worked nice.
So precious and of course more hands in the mouth!

Walmart Photos

I'm so glad to have gotten photos of Alayna sitting up like a big girl and not laying down. I have been putting off her 2nd birthday photos and I finally just decided to go and do it. Alayna was a happy girl most of the time, but towards the end she was getting tuckered out. The lady was able to get some good shots and I am pleased. The most challenging thing was keeping Alayna's hands out of her mouth and having her sit still. She loves to move around in the bumbo and push back using her legs. I knew getting her to smile was going to be tough. She'd smile, but she would never look at the camera at the same time. She'd always look down or look to the side. Stinker! But she did good considering this morning she had a new tube put in her ear.

New Tube & ABR Hearing Test

It was an early morning for us here at the DeKeyrel household. We had to be in Iowa City by 7:15 am this morning. Alayna was the number 2 patient on the surgical list to get new tubes in her ears and have an ABR test at the same time. Her left tube needed to be replaced because it was clogged and had fallen out. Her right tube was fine so the doctor decided to leave it. And the most wonderful news was that her ABR showed normal hearing results. This is the second ABR that she has had and both results were the same! I'm thrilled and I doubt that she has to have another one for quite a long time. Alayna did well with the procedure, but the most difficult part for her is coming out of the anesthesia. She gets extremely irritable and cries a lot. And she refuses to open her eyes. This lasted for about 30 minutes in the recovery room and I was about to pull my hair out. I felt so bad for her because I think the anesthetic must make the kids feel funny and uncertain. But she eventually snapped out of it, ate her bottle, and off we went! Good job Alayna. Oh, and we got a weight on her...22 pounds. Thankfully she isn't very big because we do a lot of carrying her.

Sleep Issues

We are having sleep issues again. It seems like this goes in cycles for us. Alayna will have about 3 bad months and then maybe a good one and repeat this cycle. It's tough on us when we don't get our rest. And it isn't good for Alayna either. We've tried everything that we can possibly think of. This is a popular topic of discussion on our support group website and I know that many of us 1p36 parents deal with sleep issues. So many of the kids have sleep disturbances in the middle of the night. We wonder why research hasn't documented this as a possible characteristic of the syndrome. I really pray that Alayna grows out of it.

Lately, she is awake for at least an hour at a time in the very early morning. And when she wakes up she usually is crying very loudly to the point that I can hear her over a box fan in the hallway. It's not enjoyable at all. I resort to replacing her pacifier about 2-3 times and if that doesn't work I give up, close her door, and turn the monitor off. I'm sorry Alayna, but mommy needs her sleep in order to function. Melatonin is a natural supplement that can be bought over the counter and is supposed to help with sleep. I purchased some at Walmart and we are trying it. For some kids it works and for some it doesn't. I didn't see much difference the first night, but the second night she slept from 8:45pm-6:45am! Yahoo!!!! But then the next night was torture again. So, I have no conclusion at this point. She is sending me mixed messages!

Annual IFSP Review - Early
Intervention

Last Monday we had Alayna's yearly IFSP review at the CTC with her EI coordinator and therapists. They are all so pleased with how much she has come along in just the last 6 months. She is interacting with toys and is wanting to know how they work. She is starting to bear weight more in her legs and initiate standing from a sitting position on our knee. Her stander seems to be really helping with this and she is adapting well to it. She now gets through at least 45 minutes of therapy when it used to be only a few minutes before she'd get mad and fussy. Eating is going good and she is taking more foods with texture. Her EI coordinator gave us some information to read regarding schooling for her next January. It is unbelievable that it is time to start discussing this already. But when she turns 3 she will graduate from EI and be responsibility of the Rockridge School District. We are thinking about options and in May we will have a 6 month review and likely be closer to a decision. Overall, we are happy with Alayna's continual progress and we are committed to making sure she gets the necessary services to keep moving forward.