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.