Oh Alayna, Alayna, Alayna!

Sleep Issues

Alayna continues to challenge us with her sleep issues. She typically sleeps only 8 hours straight at night. Lately, the problem is that she is ready for bed sometime between 7:30-8:30 pm. So, for the past month I've been awaken by her fussing in her bed around 4:30 am. She's ready to eat! At this time, I do give her the one bottle that she gets each day, along with her phenobarb, and put her back in her crib. Some early mornings however, she has to stay in bed with me because she just won't settle back down. Believe me, I'm trying to be creative in this department and try to figure out what else I can do, but I'm beginning to think that it's just her schedule right now. I hope as she gets older she will be able to hold out a bit longer in the evening and sleep longer in the morning. This is where she usually falls asleep every night...in the bean bag in the living room. Probably not a good habit, but putting her in her bed doesn't wake her.

Here she is a napping in her swing. I wouldn't mind the 8 hour sleep if she'd nap better. But again, her longest nap is usually no more than 45 minutes. But what a sweet little face.

Dermatologist Update

Alayna continues to keep us very busy and on our toes. I took Alayna to my "old, high school" dermatologist a few weeks ago. I wanted to see if she had any recommendations on how I could lessen the red bumps on her arms and legs that are otherwise known as keratosis pilaris. It's a common condition that many people battle during their early years and is most of the time hereditary. Most people have it only on the backs of their upper arms and on their thighs. Alayna has it a bit worse as hers has worked its way down on to her lower arms and lower legs. Unfortunately, there isn't a cure, but Dr. Perry did recommend a lotion called AmLactin that contains 12% lactic acid. It is a really nice, fragrance free lotion that is good for softening and smoothing skin. She gave me samples to use before buying it because it is a bit costly compared to most lotions. It is sold over the counter and depending upon the size it is between $15-$25. She said it is sold at Walgreens. I plan to buy some because I have noticed a difference. It may be a slight difference, but Alayna's legs and arms seem to be more moisturized and the bumps aren't as evident. The bumps don't bother Alayna at all and that is the good thing. Dr. Perry said another good thing is that she has never met anyone beyond the age of 20 that still battles this condition. People grow out of it and Alayna will too!

Kid Kart Update

I'm sure many of you expected that we would've had the Kid Kart by now and I wish we did. But it is still in the process of being ordered. Basically, we are trying really hard to get some assistance with the purchase of this and it takes time for these things to happen. So, I hope that I have some more official news on this item for you really soon. I'm looking forward to having it because Alayna doesn't enjoy her regular stroller very much at all. Especially not for long periods of time. I think a big part of that is it lacks support in the appropriate places, but again that is my guess.

Stander Update

I was told by Early Intervention that we'd have it by the end of February at our house. So, we are beginning the last week of February and I'm waiting for a phone call any day now! I know for a fact that it is on its way and I can't wait to put Alayna in it for the first time. Someday when she is able to stand up by herself holding onto the couch or my hands, I will cry. I long for the day she can get around this big world on her own. I have so many dreams for her. Progress can be so painfully slow, but we have to have patience. It's just really hard sometimes because I want things to happen quicker.

AFO's

Because Alayna is getting the stander, her PT recommended that she get AFO's. That is an acronym for Ankle Foot Orthosis. Alayna will need support around her ankles to make sure they stay straight and in the proper position while she learns to bear weight and stand. Many of our 1p36 kids have some type of braces and some use them when they begin to walk as well. Whatever it takes! This Thursday we go back to American Prosthetics in Moline and visit Len. He was our "helmet guy" too. He will fit Alayna for AFO's. I'm not sure what process that entails, but I'll let you know how it goes. I'm excited about it because even though it is a baby step, it is one step closer to that goal of getting her to stand. While we are there I might as well ask him how he thinks her head looks. She hasn't wore the helmet for a very long time and I'm happy with the shape of her head, but if he thinks we can get more of a positive result I'd be willing to consider the possibility of putting it back on her.

PT, OT, Speech at the CTC

Because therapy at the CTC is going so well (Alayna's tolerating the entire sessions) we've decided to add an additional OT/ST session during one of the usual "off" weeks that we normally wouldn't go. The speech and occupational therapists will see Alayna at the same time and work with her. As she continues to gain strength and progress, eventually we will separate the two therapies. But until then, it's beneficial that they work together. The other sessions throughout the month are devoted to just PT. Working with Alayna at home is the key and we continue to do what is recommended by all of the therapists. It is hard work on our part because we want to remember everything and not miss doing something and it is hard work on Alayna's part because it just is. Right now Alayna is really enjoying sitting in her bumbo playing with her toys. She loves turning the pages of her V-Tech musical book.

Feeding Ideas & Issues & Drinking Milk

Alayna is doing fine with eating solid foods. She still has to have soft-textured things like yogurt, pudding, and oatmeal. We try to introduce texture any way that we can. I have resorted to giving her vegetables still by baby food. I add crushed up graham crackers to it to make it thicker and give it a little texture. She doesn't do well with diced veggies yet. We have found that she likes banana-nut Cheerios, so we put them in a bag and run the rolling pin over them to crush them up a bit. I add whole milk to them and occasionally will warm them in the microwave and she loves them! I can't wait for the day that she wants a McDonald's cheeseburger or chicken nuggets with the other kids!

Because Alayna has BM issues, she has been on Myralax, a stool softener, for quite awhile. To assist with this matter, I've been feeding her Activia yogurt. She loves yogurt and it seems to be helping. Some other 1p36 parents have mentioned the use of probiotics to help with digestive issues. I want to look into this because it is a natural way to combat this problem rather than keep her on Myralax. Parents are reporting success with it and it is sold in health food/natural stores. I will keep you posted on this.

We've also resorted to putting Alayna back on a small dose of Prevacid. For awhile after she had been drinking whole milk we noticed she was spitting up more often than normal. It definitely seems to have helped. I just never know what to contribute things to. During the time she was spitting up she also had a cold. So was it the cold making her spit up or the milk? I don't know! It's a guessing game. But the Prevacid isn't hurting her, so we'll stick with it for awhile. She has never been officially diagnosed with reflux. She is doing so well drinking out of her cup and she enjoys it. It's been a challenge because if she sees her cup she wants it and doesn't want to eat her meal. So, I have to hide it sometimes. This gives us a good opportunity to sign "milk", "more" and "eat" because she really knows what she wants. Right now she puts her hands up by her eyes and covers her mouth when she doesn't want food and she wants the milk. We will work on signs, it is just going to take some time for understanding. At least we are learning to read the signs that she is doing herself!

Overall Progress

This is the toughest area for us to deal with as parents. Because we are with Alayna every day we don't necessarily see the progress she is making. It is very small progress and it just isn't obvious to us all of the time. However, many people lately haven't seen Alayna for awhile and when they do they comment on how alert she is with her surroundings, how straight she is when she is sitting up, and how well she looks around, watches their faces, and plays with toys. Her therapists tell me this every time too, so it is very reassuring to hear these comments. It's hard to describe how much these comments mean to us. Thank you for observing our sweet little girl and for realizing that she is coming right along! We are doing everything that we possibly know we can do for her. And we are always open to new ideas.

Outings

As difficult it may be for me to take Alayna out to things like the kids ball games and even to the store, I know that I need to do it anyway. Alayna needs to be put in those situations and socialized because she can't stay at home the rest of her life. She'll be going to school next year!Taking her to things is not an easy task and it is a challenge to get her to cooperate and be in a good mood the entire time. And when she's not that's when I begin to lose patience and I get just as frustrated as she does. We always try and take toys as distractions and her blanket. This past weekend I hesitated to take her to Drake's basketball game for an hour because of the "fit" she threw two weeks ago. It didn't go very well at all. She hated the stroller and I couldn't do anything to make her happy. So I had to get creative as we often have to for Alayna. I took her bumbo seat and sat it in between the bleachers. She used the bleachers bench as her "table" and she played with her toys for nearly 45 of the 60 minutes! Yeah! She was happy and I was happy! It was a good day. I'll definitely do this again. Forget the stroller. I hope she likes the Kid Kart better.

I have neglected taking pictures of any of the kids lately. OOPS! We've been so busy. I hope to take some in the near future and share them with you.

2-Year Doctor Appointment

Alayna sitting pretty (with a new outfit) waiting for her birthday party guests to arrive. The beautiful bouquet of flowers on the table was sent to me at work on her birthday. The card was signed "Thank you mommy for everything you do for me, Love Alayna." It was such a nice surprise. Who doesn't like a flower delivery at work!? I have some wonderful co-workers in the math department that are always looking out for me and this was from one of them. (Thank you Deanna!) It was the perfect centerpiece for the table.

Alayna sitting on the couch getting ready to go to Drake's basketball game. I love this outfit! Thanks Grandma for loving Gymboree!

By "cake time", Alayna was getting tired and had no interest in it. She was more busy with her toys.

Okay, Daddy didn't get the camera focused, but it kind of looks like she was trying to blow out the candle! She was definitely looking at it.

This was taken on her actual birthday. We celebrated as a family by having pizza and cake. They all wanted to eat it and that is how I got them all to cooperate for the picture. Alayna loves it when Lexi holds her and talks to her.

Alayna is now 2 years old, Douglas will be 5 on March 18, Alexis will be 11 on March 30 and Drake will be 9 on April 10th! We celebrate lots of family birthdays from Jan-April!

Kneeling therapy

More practice sitting. Alayna loves that cloth book she is eating. It is from Walmart and makes crackling noises. It's one of her favorites, so we have 3 of them.

Birthday Party

We would like to say "thank you" to those of you who came to Alayna's birthday party. We appreciate the gifts and for helping us celebrate her birthday. It was a special evening. We look forward to the next year and more accomplishments. She has come a long way in one year and I hope we can look back in 2010 and say the same thing.

2 Year Check Up with her Pediatrician

Alayna visited Dr. Neptune for her 2 year check up. She weighs 21 pounds 9 oz and is 31 1/4 inches long. I didn't even ask to see if she fell on the typical growth charts. He seemed pleased with her growth and I am too. She gained 3 pounds of a year and 1 of those was in the last 6 months. Her length increased by almost 2 inches. I just remember that my other three kids weighed this much at 1 year old. Her ears looked fine, tubes looked good, and basically she is healthy. She got her Hepatitis A vaccination and we were out the door. I love those kind of visits.

My only concern that has evolved since this visit is that Alayna is spitting up still every now and then. I plan on putting a call into the doctor to see if she should be put back on Prevacid or if we could possibly get a referral to a GI doctor to see if she has silent reflux. It is a common thing for our kids. Alayna has been off of Prevacid for quite a long time, but since we are now incorporating milk and other foods into her diet, I'm wondering if she needs to be back on it. Sometimes kids have silent reflux and it isn't easy to diagnose. I may pursue having some testing done.

Dermatologist

Friday I will take Alayna to see Dr. Perry, my old dermatologist that I saw in junior high and high school. Oh, that brings back fun memories! I want to see if she has any suggestions for the keratosis pilaris that Alayna has on her legs and arms. I'd love to find something that decreases the appearance of the bumps. I'll let you know what she says. Maybe this information will help others too!

3rd Annual 1p36 Conference

It's official! We are going to the 3rd Annual Conference held this year in Indianapolis, IN from July 31-Aug 2. It is pretty much in our backyard and we wouldn't miss it. Our reservations are made. We plan to take all of our kids and I think both of our parents are also going. Dana and I went two years ago when Alayna was just 9 months old. It was in Florida and we loved the chance to meet other families and see the kids. It is an opportunity that we can not pass up and I want my family to meet these wonderful people to. It just helps heighten awareness and give everyone a better idea of what the future may hold and what to possibly expect with Alayna. And of course while we are there, we'll see the downtown area and plan a family outing on Sunday to the zoo. Can't wait!

HAPPY 2ND BIRTHDAY TO OUR SWEET GIRL!

Two years ago we were eagerly preparing for the arrival of our new little baby girl. Washing up clothes, buying new "pink" things, getting the crib set up, and making sure the bottles were ready right along with the infant car seat. I had never been so excited in my life. I prayed to God to please give me a little girl so that I would have 2 girls and 2 boys. It was my ultimate dream, my vision, and my prayer. The Lord answered my prayer, but gave us a little bit more than what we asked for. Thinking back to the evening of January 29, 2007 jogs many memories, most of which are so vivid in my mind it seems like it all unfolded just yesterday. At the time little did I know the huge impact that night and that one moment would have on my life and my family's life. My life went from really easy to extremely difficult very quickly.

It has been a rather emotional time for me. I remember last year when she was turning one I felt these same feelings. Feelings of fearing the unknown and the future and what the road ahead looks like. Maybe it is destined to happen every year around the celebration of her birthday. I am happy to celebrate her two years of life, but in the back of my mind only wish she was 6 months old. That way her age would match her developmental age. It is so very hard for me still to get a grip on knowing she is so developmentally delayed. It tears my heart apart. There are no other words to describe it. And knowing that the gap will always be there saddens me. I truly don't know if I'll ever be able to come to terms with it completely. So, when people ask me how Alayna is doing I can say "great." It's me that has this hang-up, but I'm continually working on it and I hope to eventually say someday that I'm great too.

So, happy "birth" day to Alayna. She continues to touch our lives every single day and remind us of what is important. We love you and can't wait to celebrate with the families on Sunday. I hope to put a nice post together with lots of pictures. Say a prayer that Alayna will like to dig into her cake this year!

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!