Alayna Finally Tolerates Therapy!

Kim (PT) practices sitting with Alayna on a slanted bench. Those PT's know so much about alignment and getting Alayna's pelvis in the right position and her rib cage.

Jean (OT) was delighted to see how Alayna is focusing on toys and wanting to reach and get them. She is sporting her shiny pink shorts that help keep her legs together. Sara (Speech) assists with the toy and watches Alayna's use of her hands and fingers. Self-feeding is what we are working for!

More work on sitting with proper alignment and putting her feet flat on the ground.

The PT does alot of stimulation of Alayna's muscles by certain placement of her hands and using pressure. So in this picture it doesn't look like much is happening, but there is!

Alayna loves the variety of their toys. They all have sounds and some have lights.

This is a padded bench the CTC loaned us to practice tall kneeling, sitting, and toy play. It is neat in that its height can be adjusted up and down and can be used for a variety of therapy exercises. Here Alayna just enjoys sitting in the bumbo seat and playing with the toys.

A smile!

Alayna is getting to be a pro at drinking from a sippy cup. It's the most wonderful thing ever!

Therapy

Sorry about not posting lately. It's finding the time that is most difficult. Alayna has been to the CTC for therapy two Monday's in a row. She is doing the best she ever has. Yippee!! Not once did she whine or cry or throw a fit. Each time she tolerated it the entire hour and all of her therapists couldn't have been more pleased. And I was thrilled too. We were accomplishing true therapy and it was awesome. We continue to work on sitting, tall kneeling, getting on all fours, and putting her feet flat on the ground. Alayna has come a long way. Literally, there used to be days when I'd walk in the CTC's door, sit her down, say hi to the therapist, and have to leave within minutes because of Alayna's unwillingness to cooperate by having a crying spell. I think 2009 will be her year if she continues to perform like she has these past two sessions. Good things will happen!

Eating

Alayna is now eating only 2 bottles a day, one in the morning and one before bed. Otherwise, she is drinking whole milk from a Nuby sippy cup (bought at Walmart - it is wonderful). Yippee! She has 3 meals a day which consists of the foods she eats pretty good. It can be tough sometimes trying to come up with something different to try and feed her. It has to be soft and not require too much chewing. Otherwise, she pops it right back out of her mouth. Meal time challenges my creativity sometimes. However, we've expanded the menu a bit more to include pancakes, eggs, diced carrots, and pudding. Alayna absolutely loves applesauce and yogurt. She's also taking a liking to maple & brown sugar oatmeal.

I haven't got to the store yet, but we are going to work on biting down and getting the chomping motion going. Her speech therapist suggested for me to get big carrots and cut them into large pieces that she could bite down on and hold, but not break off. I may try dipping them in a little ranch dressing just for fun. Alayna still has some mouth "unawareness." I see this the most when she still has a bite of food in her mouth and doesn't seem to swallow that last bite. It's like she doesn't feel it in there. We are working on making that connection.

Alertness of Surroundings

Alayna is definitely becoming more alert to sounds and her surroundings. She is playing with toys so much more and when she hears some other toy in a different location she stops to try and find out where it is. I love seeing this. I've also noticed that when I shout her name across the room, she will try and find me. Sometimes she does and makes eye contact. She is paying much closer attention to her siblings, books, and the television. Alayna has come a long way with these tasks over the past year. I used to wonder if she could hear or even see me. I have no doubt in my mind that she can.

2nd Birthday

Alayna will be 2 years old on January 29th! Very hard to believe, yet probably the longest, most difficult two years of our lives. When I think of everything we've been through I can only say "wow, it's only been 2 years!" They always say kids grow up fast, which I always agreed with. Up until we had Alayna. For us, raising Alayna hasn't held true to that statement one bit. I will post a special birthday section later.

Eye Exam Update

Alayna visited Dr. Drack in Iowa City and her vision is great! Yippee again! Dana was a wonderful dad and took her on his own. I'm very grateful to not have had to use a sick day to go with them. I have to save those for actual sick days! Alayna had to have her eyes dilated and to do that Dana said it took 3 or 4 of them to hold her down. She is so strong, I just wish she had the right programming to use her strength. Alayna doesn't have to return to the eye doctor for a year!

Stander Update

Alayna's Squiggle Stander has been ordered! Hooray! It should be here in our home by the end of February at the very latest. I'll keep you posted. Thanks again to all of you that supported Alayna's fundraiser. We couldn't have done this without you.

Alayna playing with her talking baby. It says "I love you" and she gets the biggest kick out of it. She thinks it really talks and she stares at it and smiles. It's cute.

Checking out her baby!

A Night Out, Eating & Appointments

Alayna still needs assistance to sit up by herself. She still spends a lot of time rolling around on the floor. So, her hair in the back gets extremely tangled. I bought "tangle" spray that helps, but we are now resorting in wearing a pony-tail more often. She hates getting her hair brushed!

I know it seems like we've been practicing the same skills forever. I'm right there with you. And the waiting is painful. But Alayna will get there at her own pace. Sitting up is getting better. She doesn't stop herself from falling. The motor-planning for that is just not there yet. It means nothing to Alayna and until falling over matters to her, we just keep showing her how to put her hands down and pray that someday she "gets it."

This is how she has been falling asleep lately. She puts her blanket over her face.

A Night Out!

Alayna got a night out of our house last Tuesday. She got to spend the night with her Grandma and Grandma Bush and got 100% of their undivided attention. The last time Alayna spent the night some place was with them 5 months ago! So, it was time. We were told that she was an angel and slept really well. This truly was the best Christmas gift to me. Dana and I were able to take the other 3 kids to a movie and spend some time with them. Everything in our household seems to revolve around Alayna and her needs. So it was a wonderful evening topped off by me not having to turn on the baby monitor and worry about our Miss Alayna waking me up early like usual. It was so nice to have one morning where no one needed me right away. Thank you!

Eating Accomplishments

I've been really pushing the feeding issue with Alayna since the New Year rolled around. I am so proud of how she is doing. I am trying new foods that I think she'd enjoy and here is what is on "Alayna's Menu" so far that she does well with: mac n' cheese, yogurt, applesauce, cinnamon or jelly toast, oatmeal, small pieces of noodles, and whole milk from the sippy cup. I plan on giving bananas and cheerios in milk a try this week. I know that doesn't seem like much, but I'm imagining her to be like most toddlers with a limited variety of what they like and tolerate. Texture is an issue, as well as things that don't dissolve very quickly. Chewing is something we are still working on. It doesn't happen very often, but if a piece of food gets stuck in the back of her mouth/throat she gags. I hope that this skill keeps moving forward. I would love to never have to buy baby food again. I am also planning on looking into getting something that would puree foods that we eat, so that dinner time and planning is easier for us.

Appointments

Alayna has many upcoming appointments between now and May. Four are in the months of January and February. Most of the appointments are either follow-ups or yearly check-ups to make sure everything is going okay. The Shriner's visit is in February and that will be a new experience. On Thursday, Dana will be taking her to see Dr. Drake in Opthamology at Iowa City. This will be the first visit to the eye doctor there because up until now she went to the Illinois Eye Center in Peoria. I don't expect anything to be wrong and we pray for a good report. I will let you know.

Break is Over

Well, our winter break is over and we head back to school and work on Monday. I am dreading it more with each passing minute. I think what bothers me most is how dark it is outside when I have to get up. Even Douglas will be getting on the school bus by 7 am and it is still pretty dark out. As much as I hate getting out of bed in the morning and waking to an alarm clock (okay, most of the time if Alayna cooperates and sleeps), work and school provides my family with a routine and some structure. During break our bedtimes have been much later than normal and we tend to be in the kitchen eating more than usual too. Breaks are nice, but things get out of whack so to speak. So, on Monday our normal routine returns and we'll get back to the grind. Only to then look forward to Spring break! Happy New Year everyone. We look forward to 2009 and pray that Alayna's accomplishes more goals.

Christmas Reflections & Photos

It's been a tradition since Alexis was born that we get a family photo at Christmas time. At least then I know it happens once a year! From the left is Douglas with his cheesy smile full of his favorite bubble gum and his "cooler than ice" t-shirt, Drake who loves football (Dallas Cowboys like his dad) and football cards and is sporting his Iowa Hawkeye jersey, Alayna who can't get enough of her hands because of cutting her 2 year molars, me and Dana, and Alexis, the best big sis ever who is growing up fast, becoming very interested in fashion, and outgrowing "toys." :(

Finally, all of them in a good mood at the same time and their willingness to cooperate for a group photo. Even Alayna had a smile on her face.

Alayna and her new Raggedy Ann doll made by her Great Aunt "Bella". Thank you Bella!

Alayna is playing and "talking" back to her Auntie (Annette).

Alayna smiling at her Auntie who keeps tickling her feet!

Alayna takes a nap before we head to Grandma & Grandpa's house for presents and dinner.

The kids got a special visit from Santa and Alayna wasn't in any mood to sit on his lap. She was too tired by this time and when that happens she just shuts down.

This is the DeKeyrel side of our family - Dana, his parents, sister and brother, and all the kids.

The 8 DeKeyrel cousins! Alayna is in the bean bag, Drake is to her left and Lexi and Douglas are on the couch.

This is a photo of more cousins on Angie's side of the family.

The DeKeyrel and Epperly cousins!

Well, Christmas is over and it was a busy one at that! The few weekends prior were committed to family get-togethers that were bigger than the usual holiday celebrations we do with immediate family. It doesn't happen every year that we get the entire family together on both sides, but this year it happened. It makes our grandma's very happy! And then of course, we celebrated with the DeKeyrel side on Christmas Eve and my side on Christmas day. Both were very nice and we value the time we can spend with our family talking, playing games, eating, and laughing.

I have a few Alayna updates. Teething has been a real issue for us this past week. I truly feel sorry for her because it is obvious that they hurt. Hands in the mouth, crying, waking up early, chewing on her bottle nipples, and messy diapers are a few drawbacks to say the least! We try to comfort her as much as we can along with giving her tylenol and orajel for pain. I can't wait until they are all in because I think she'll be a much happier Alayna.

We continue working on sitting. It just isn't clicking yet. She does good for awhile and then she falls over. It is frustrating because I want her to be able to do this so badly. I get sad that it is taking so long. It is disheartening and I only wish as a mother that I could do more. My new year's wish is to have a year of accomplishments by Alayna. 2008 was good to us by keeping her healthy, now I wish for her to be able to move around in other ways besides rolling. I want her to sit and stand on her feet more than any of you can imagine. I want her to be able to eat other foods and drink from a sippy cup.

This is a link to a short video clip on youtube. It was posted on our 1p36 support group message board and I thought I'd share it with all of you. It is about chromosome disorders and it kind of sheds a little light on to how many different ones there are.

http://www.youtube.com/watch?v=14jsoiEvIhg&eurl=&feature=player_embedded

Alayna continues to be as sweet as ever, but I'm going to be honest when I say that I'm tired. I'm so tired sometimes that I wonder how I get to the next day. As a mother, I admit that I like the feeling of being needed by my children, but in moderation. Alayna requires a different level of need that sometimes squeezes every ounce of steam and sanity out of me. It's hard to relate to unless you maybe try to envision taking care of a 4 month old baby for two years straight. And the 4 month old baby doesn't get older, they stay 4 months old for 2 years straight. TOUGH AND EXHAUSTING. It is hard to imagine that Alayna is going to be 2 years old in a month. In a way, time has flown by, but in a way it hasn't. I'm still taking care of a baby and do the baby things like make bottles, bath her in a baby bath tub, feed her, diaper her, and carry her.

I am praying harder than ever before that God will give Alayna the strength to sit and do these other things soon. I know that I have to put my faith in God, but sometimes I wonder if he considers my feelings about all of this. I'm the one living this every single day and I'm asking for help here!!! Do you hear me God?

"Oh, brother! A broken leg!"

Alayna and her sweet smile. As you can see, she is still enjoying her infant swing. Who would've guessed she'd still be using it at almost 23 months of age. She loves to swing and it is very soothing to her.

Love the double chin! Alayna doesn't have a very long neck. I think that is a common characteristic of 1p36. I'll have to check it out. Or maybe it's because I haven't had to tell her to stand up straight yet, lol!

And her hair keeps growing and is still curly. It really reminds me of Lexi's when she was about 3 years old. The only time it doesn't look crazy is right after a bath when her curls are all so nice. I remember with Lexi that on special picture days I'd give her a bath and wash her hair and go immediately to the portrait studio so it wouldn't get messed up. Oh, what we do for good photos!

Douglas is 4 1/2 years old and he loves to be outside. It doesn't matter if it's 95 degrees or 9 degrees! He was so excited to see snow and he jumped at the chance to shovel our sidewalk and driveway. All I had to say was "Awesome, thanks Douglas!"

Smiling proud to show off his good work.

Then the snow got the best of Douglas last Sunday. In this picture his is showing off his splint from Unity Hospital in Muscatine.

Here Douglas is showing off his new blue cast that literally goes up to his butt cheek. Oh, brother!

As if the hustle and bustle of preparing things for the holidays isn't enough, Douglas decided to throw a broken leg into the picture. He was sledding on Sunday in our yard with Alexis and Drake like they had been doing all week long. Alexis explained to us that his foot must have went into a big hole in a snow pile and came to a halting stop. He fell off of the sled and his ankle twisted. I wasn't around to witness all of the excitement because I went shopping. It happened about 5 minutes after I left. According to Alexis he was in a lot of pain. He must have got up and walked inside though.

When I got home later that evening, Dana informed me that he was taking Douglas to the ER to get an x-ray because he thought he might have a broken leg. OMG! Before I left earlier that day, I asked all of the kids and Dana to please not call me or text me because I needed some alone time. You see they do that all of the time and I'm usually not even 15 minutes down the road. But for heaven's sake, this is not at all what I meant not to text me about! So, off to the ER they went.

Douglas has a spiral fracture of his tibia (bigger of the two bones in the lower leg). It's the kind of fracture that kind of winds around the bone like a spiral. On Monday morning, we headed to Moline to get it casted. He was excited to pick a blue cast and it literally goes up to his rear-end. The first day he was very cautious and wouldn't move unless I carried him everywhere. That really stunk! I don't know how many times I made the trip downstairs to change the Wii game disc. However, since then he is adapting to his bum leg quite well and is getting around pretty good. Dana and I are both impressed with his ability to adapt and do things differently to move from one place to another. And that little guy is strong and uses his upper body strength to do a lot of the movement. He will have this cast on until December 29th and hopefully then he will get one that goes below the knee. For safety and mobility reasons, he is missing pre-school for 9 days, but it is the best choice. He is going to his babysitter, Ms. Amy, during the day and enjoying it. I don't think he is missing the very early bus ride to school at all.

Alayna continues to be as sweet as ever. Even though there are times that her whine and cry nearly sends her dad and I over the edge! Her ears are both completely cleared at this time. I hope they stay that way. She has also been sleeping really good. I can't remember the last night I had to get up in the middle of the night. Now, watch me jinx myself and have to do it tonight. I have turned the monitor on a very low setting and if she isn't loud enough, I don't hear her. And neither does Alexis. So as far as I know, if she does wake up, she is falling back to sleep somehow. Eating has been a bit of a change lately. I'm not sure if it is due to timing and her being tired, teeth, sore throat, or just sick of drinking a bottle. At times she eats good and at other times her mood is so bad it isn't worth forcing the issue. She refuses pretty forcefully. On Monday, after being very tired all day long and fighting her sleep, I witnessed her having one of her seizure episodes while she was in the swing. I stopped the swing and comforted her and waited until it passed. I will make note of this and if it happens again, I will call neurology in Iowa City to see what we should do. Again, these episodes have all occurred around sleep, either right before or right after a nap. That is a common time for seizure activity for our 1p36 kids.

I am looking forward to next Friday, December 19th because of getting out of school for our Christmas break. I enjoy spending the time at home with the kids and not having to set the alarm clock. I love the fact that we have no schedule. And I'm the first one to admit that if I can stay in my p.j.'s all day long I do. And I also don't care who comes to the front door! This year has flown by just as fast as the previous one's and I have lots to reflect upon. It's hard to believe that Christmas is only 14 days away!

Thanksgiving With Alayna

Alayna is doing better each day with sitting! We can sit her with some toys and put the boppy pillow behind her and she plays "upright" for a good 5 or more minutes. It's very nice to see.

"Mom, put the camera away!" It is funny how she can be so smiley and the minute I bring out the camera she senses I'm doing something.

She has the sweetest little face.

Alayna and her 3 siblings and 2 of her cousins pose for a picture together. This doesn't happen very often, so I took advantage of it. Alayna was getting tons of attention at this time.

Family photos with all of us are very rare too. I wanted one to help us remember our first Thanksgiving with Alayna at home!

Me and Alayna just relaxing and enjoying the day.

Alayna showing off her improved sitting again. And of course, she is still cutting her 2 year molars and chewing on her hands, her blanket, or nearly anything else she can manage to fit inside of her mouth.

Alayna is definitely trying to tell us something here and I don't know what! She is also modeling her first ponytail. She has "crazy, curly" hair and it is growing in very long in the back. Kind of like a mullet, lol. But it is very cute. Lexi had similar hair and patience is the key because she has beautiful hair now. It will all grow eventually.

Alayna loves eating bananas out of the self-feeder. The only problem is that they are a mess to clean out of the mesh bag. But see how well she holds it with two hands? Way to go Alayna!

More play time. The CTC loaned us a little table that is perfect for her to put over her lap and have toys on it. It doesn't make her reach so far and actually gives her a signal on her legs when she starts to fall backwards. She actually corrects herself and uses her tummy muscles to pull forward and sit back up. It is nice to have and she enjoys throwing all the toys off of it!

Alayna put this butterfly toy in her mouth and was bobbling it back and forth with only her teeth. No hands! It was cute, so big sis Lexi decided to capture a photo. It makes us proud to see her wanting to put things in her mouth. She didn't always want to do that. I think it is a key step to eating different textures and being able to tolerate the feeling of them in her mouth. And also her getting over the fear of allowing something unknown near her lips and mouth is great.

More banana!

Thanksgiving

Thanksgiving seems to be a day that becomes more meaningful to me as each year goes by. Maybe it is just me getting older, but I seem to reflect more and realize the importance of giving thanks for the things that I am grateful for. This Thanksgiving was extra special for my husband Dana and I because we had our little girl, Alayna, at home with us and she is healthy. Last year was her first Thanksgiving and she spent it in Iowa City trying to recover from RSV and pneumonia. That was a very exhausting time for both of us both physically and mentally and we are thankful that this year was nothing like it. This Thanksgiving we enjoyed being with our 4 children, cooking, baking cookies, putting up the two Christmas trees, watching TV, shopping, sleeping, playing the Wii, and just hanging out. For these things I am thankful. The kids are already asking how many school days until Christmas break! I'm counting too.

Ear Update

I have wonderful news regarding Alayna's ear. Last week I had to take her in and she had blood in her left ear and it was unknown as to whether the tube was in place or not. And we didn't know where the bleeding was coming from. Well, I took her to see Dr. Neptune this Friday and the tube was still there and looked to be just fine. He said it looked like it was functioning like it should be! He believed that the bleeding was caused by a scratch somehow because he did remove quite a large scab from the inside of her ear. WEIRD! I've never seen Alayna put her fingers in her ears, but maybe she did? We are continuing to put drops of Ciprodex in her ears three times a day for at least another week to make sure it doesn't get infected. It is looking much better and I haven't seen any kind of fluid coming out of it. I hope this adventure is over!

Sleeping & Other Updates

Alayna has been sleeping much better. At least for now! I don't want to jinx myself by praising her too much because tomorrow it may change! She still tends to fall asleep early in the evening usually before 8pm, but has been sleeping to around 6am. Not too bad for her. If she wakes up in the middle of the night, that is news to me. I continue to sleep with a baby monitor on and I don't hear her. Maybe that's because either I don't want too or I'm exhausted. It's probably a combination of both. One day we are going to have a huge celebration in this house for the last day I ever make a bottle and change a diaper and the last day I turn the baby monitor on! You are all invited too! These are the little milestones I talk about on this blog and how huge they are in Alayna's development. It's these little things that so quickly passed with my other three children in a blink of an eye and I never really realized it. It is neat seeing things for what they were and are in "slow motion" with Alayna. Gosh, how it makes me thankful for the three "typical, healthy" children that I have.

Alayna continues to change all of the time. She is becoming more alert with her surroundings each day and is beginning to carefully watch things like her siblings talk to her or me in the kitchen. This weekend was a first, at least I think, that I realized she was watching me in the kitchen and looking for me. I loved that! She continues to make sounds and "babble" and use her tongue to try and "talk". You just have to catch her in the talking mood. Most of the time it happens when she is getting undressed to go take a bath...what's that all about??!! She is funny. We continue to work on getting her to reach for us when she wants picked up and we are trying to get her to wave "bye-bye." For now she just smiles at us and the connection isn't there quite yet. She continues to be very cuddly and we love hugging her. I have a short video of her giggling, but I'm running out of time. So, I'll post that next time.

Tomorrow is December 1, which is hard to believe. Christmas is just around the corner and I look forward to spending it with my family. Unfortunately shopping time is limited having 4 kids, but we'll get it done somehow. It used to be at the top of my list of worries, but not anymore. Alayna has that way of putting things in perspective for me! I heard a saying the other day that went something like this: "Our character is defined by the choices that we make. And we have the opportunity to make the right ones." It made me think of course. So maybe the next time I see a bell ringer at Walmart, or a donation can someplace, or a flier for someone needing help, or whatever it may be, I'll stop and think twice about what the right choice would be. Humm...just something to ponder.

All We Can Say Is "WOW"...Thank you!

Alayna playing with her new singing penguin from the Galloway family who drove all the way from the suburbs of Chicago to meet her!

Alayna's Benefit

Saying "thank you" just doesn't seem like enough. Alayna's Benefit last Saturday night was a complete success. I'm so thankful for all of the people that joined us for dinner and trivia, for those who donated items to the silent auction and bake sale, for those who have made monetary donations to her fund, and to the many others who worked that night to make everything run so smoothly. I've heard nothing but good compliments on how things flowed nicely, how organized the event was, and how much fun everyone had. That is due to the dedication of my family and friends who put this together. Many people donated hours of their time to make this benefit so wonderful. Our community is amazing and the support everyone has shown us is priceless. Alayna will get her stander and her Kid Kart! Thank you to everyone who has supported this cause.

Teeth

Well, Alayna wasn't pleasant over the weekend and lasted until about 7:30 pm at the benefit. On Sunday, Dana and I discovered why....she is cutting her 2 year molars on the top of her mouth. As soon as we applied some orajel, she stopped crying and went to sleep. I was glad to finally figure out what was wrong! It isn't always obvious with Alayna like it might be with typical developing children. It's like a mystery or a secret that you just have to keep digging at.

Ear Issues

Alayna has been sleeping decent for her anyway. Most of the time she is still waking up one time in the wee hours of the morning. This morning she was awake from 4-5 am, but then finally fell back asleep. However, when I took her to Patti's, Patti noticed that her left ear looked "dark" inside. When we looked closer it was obvious that it had been bleeding. I cleaned it out the best that I could, but immediately made her an appointment with her pediatrician.

I took her in after school and he told me it was one of two things. It could be that it is just scratched or it could be that the tube in her ear has moved. Unfortunately, my gut is telling me that we are wishful thinking that it is only a scratch because Alayna has tiny ears and she still isn't a child that puts her fingers in them. My guess is that it is the tube. Dr. Neptune couldn't determine which it was because of all of the blockage and his inability to see the tube. So, we are to flush it with drops 3 times a day and return in a week. I plan on taking her the Friday after Thanksgiving to get it checked. I'll keep you posted! I hate to think about making another trip to Iowa City to put her under for the procedure of putting another tube back in, but we may have to. The good thing is that maybe they could perform the sedated ABR test at the same time that was planned for January. If it comes down to needing a tube, we will have to get her in ASAP to Iowa City and in the meantime make sure she doesn't get an ear infection.

Early Intervention - IFSP Plan

Last Thursday, we had Alayna's IFSP 6 month review. During these meetings, Dana and I express our concerns and we set goals for Alayna for the next 6 months. Her therapists make recommendations and they are taken into account as well. I am very proud to say that Alayna accomplished at least 3 of the goals we previously wrote. It is rewarding as a parent to say that Alayna can now sit with support, play with her toys, pass a toy from one hand to the other, put a toy to her mouth, eat more than just stage 2 baby foods, and I'm sure there are more that I'm missing! But you get the point. Any progress or milestone met is huge gains for Alayna and we are proud of her. She takes itsy-bitsy baby steps, but she'll get there.

Again, thank you very much for supporting Alayna, me, and my entire family. You don't know how much that means to us and how much it helps us. Here is a video montage of some of the photos I took at the benefit. I apologize for not taking more, but it was difficult doing that and trying to get around to as many tables to talk to people. I know I missed so many of you and I'm sorry! By looking at the photos you can see there were soooo many people there. Thank you to our family friend, Denise, for taking more photos that night. I can't wait to see them.

Make an on-line slideshow at www.OneTrueMedia.com

Alayna Makes Front Page of The Muscatine Journal

I enjoy giving Alayna hugs! Here she is full of giggles. If you catch her in the right mood her laugh is very cute. I just wish she was like this all of the time. Trust me, she has her fussy moments quite often. I guess we take the good with the bad.

Relaxing with dad tonight. About 10 minutes after this photo, she was fast asleep in her bean bag chair. Her eyes are looking a bit heavy, huh?!

Newspaper Debut

We feel very lucky that a journalist from the Muscatine Journal was willing to write an article about Alayna. The Muscatine Journal is one of our local newspapers that covers news in Muscatine and the surrounding towns. The article served two purposes in our minds. One, to spread the word about 1p36 Deletion Syndrome and to educate anyone we could reach. That was the most important purpose to both Dana and myself. And secondly, to publish the information about the upcoming benefit being held this Saturday night. Here is a link to the article as it is on the web. In the actual newspaper it was printed right on the front page with a cute photo of Alayna. We are very proud parents and of course love the opportunity to glorify Alayna and tell everyone what blessing she truly is.
http://www.muscatinejournal.com/articles/2008/11/11/news/doc4919aae172b8a671062428.txt

Neurology Update in Iowa City

Today we went to Iowa City to see Dr. Mathews, Alayna's neurologist that saw her last November during her 2 week stay at the hospital with RSV. The reason why we are seeing her again is because Alayna had 2 seizures back in September just out of the blue. Alayna was put back on phenobarbital and since she started the medication has only had 1 seizure that we have witnessed. Normally, Alayna has been on the liquid form and it tastes nasty. Usually we put it in her formula bottle to help disguise it. Fortunately, we get to try the tablet form and put it in food. She is a good eater, so I hope she swallows it okay and it's small enough that it won't gag her. We are allowed to cut it in half if we need to, but not crush it as it also has a terrible taste like the liquid. Dr. Mathews didn't feel like an EEG was necessary at this time, so the plan is to revisit her in 6 months. If things change or an issue suddenly comes up, we will handle it over the phone. Alayna weighed in at 22 pounds with clothes on and was 31 inches long. She's doing good!

Referrals to Other Iowa City Doctors Made

While we were at Iowa City, I asked Dr. Mathews if she would be willing to make referrals to a vision doctor, cardiologist, and a geneticist right there at the hospital. It has been our goal for awhile to get all Alayna's records and doctors at the University of Iowa. It is convenient and much closer to us than Peoria. Plus, we can always do two or more appointments in the same day because they are always willing to coordinate with the other doctors. So, Dr. Mathews made the referrals and we are in the process of setting up all of those appointments. She also reinforced to us that she is familiar with 1p36 Deletion Syndrome and believe that they did a study on it about 10 years ago. The geneticist she referred us to is very familiar to it and interested in it. We were so thrilled to hear this! Dana and I feel like Alayna is in the best hands at University of Iowa Hospitals and Clinics.

Thanks again everyone for all of your continued support. We look forward to spending this Saturday evening with a lot of you! We have a feeling that Alayna will be benefiting from this fundraiser for a long time. We are blessed to have her in our lives, to have a wonderful family, and to have you as our friends.