Alayna In Her Stander

Alayna will stand in the stander anywhere from 10-25 minutes at a time. She is doing well and is adjusting faster than I thought. As long as she has a toy, she is happy!

Here is her favorite cloth book again. She loves eating it! The tray to the stander is a Godsend.

Alayna had to go back today to get her AFO's adjusted and cut back on the foot part. They were too closed around the top of her foot and that made it extremely difficult for us to get them on her. They are much better now and this is the first time she stood in the stander with her AFO's on. She didn't mind them at all.

I haven't put her standing completely vertical yet. I've always left her at a slight angle by recommendation from her PT. Usually she tries to sneak her knees up out of the stander, but since her AFO's were on she didn't do this. Maybe they won't allow her to. That would be wonderful because her PT was going to try some knee guards on Monday at her PT session. Maybe she won't need them after all.

Oh, it's so hard getting all of them together at the same time for just one photo! Someone always has to be the clown! Tonight it was Drake. They all still do so well with Alayna and truly love her. Lately, Douglas has been asking me if Alayna is a baby. I don't know why he asks that. I tell him, no she isn't really a baby, she is a toddler. He looks at me funny and I just tell him that she has a lot of baby qualities which is nice! He just smiles....
They are looking forward to a week from now when Spring Break starts. Their Grandpa and Grandma DeKeyrel are blessing them with a vacation to Disney World. Alayna is not old enough to go, so she is staying back home!

Not too much has been happening lately other than the normal, daily grind of work, school, house chores, ball practices, etc. Unfortunately, Alayna is going through another round of restless, early mornings. For a week now she has woke up sometime between 4am-5:30am crying. And she is loud! I can hear her over a closed bedroom door and a box fan on medium speed. It's a period of fussiness that can last anywhere from an hour to an hour and a half. I've been getting up about 5-7 times to replace the pacifier. God, I wish she could find this herself and put it back in. Oh, this task is so hard for her and I hate that it is. I think it is her teeth. Her chin has been really red and broke out lately and that is the only thing I can contribute it too. She doesn't have a cold or ear infection and she is not hungry because she eats more than I'd expect her to. She did this same thing awhile back and I pray that with time it too shall pass. I'm longing to be awoke by my alarm clock and not Alayna.

Again, thank you for reading Alayna's blog and for keeping up with her development. Honestly, things are looking up! Outings are getting a bit easier and Alayna just seems to be happier more often because of her ability to entertain herself. I hope that this summer is easier than the last one. I know that therapy sessions will still keep us busy and nap time will still be important, but I really hope that we can go to the pool more often and get outside and play. It's no fun staying inside every day and feeling cooped up. We'll just have to see!

It's Been An Eventful Month!

Alayna now enjoys sitting in her tub ring and chewing on Douglas's foam tub toys!

Alayna is trying on her new AFO's!

Very tiny AFO's for Alayna to wear while she is in her new stander.

Alayna is sitting better each month. She will sit for minutes at a time, but I'm still a bit protective and put a pillow behind her to catch her fall. A toy on her lap seems to help her balance and forces her to use her tummy muscles to straighten back up again.

Alayna playing with her v-tech car toy. She still continues to love sounds and light toys.

Double-fisted and watching the water! It thrills me that she enjoys having these toys in her mouth in hopes that someday she will be able to eat a cracker or anything else with more texture.

All clean!

Douglas begged for a picture with his little sis! He thinks taking a bath with her now is cool!

Otolaryngology Appointment in Iowa City

A few weeks ago we took Alayna to Iowa City hoping that we would get a sedated ABR. Her first one showed positive results with normal hearing levels, however, they thought we should get a follow up hearing test in a year. The doctor first wanted to try the sound booth, but developmentally Alayna is nowhere ready for that. So, a sedated ABR is the best answer. When we got to the appointment, the protocol was to double check her ears for no infection or fluid so the test would be accurate. Well, low and behold her left tube was no longer in the correct place and she had fluid in both ears. So, out came the tube in the left ear. They decided to not do the test and instead Alayna has an appointment for new tubes on April 17th along with a sedated ABR that will be done in the OR at the same time. I was a bit disappointed, however, now I know why she may have had many sleepless nights and had been rubbing that ear so much. The tubes lasted for about 13 months and that is good.

Stander & AFO's

The stander is finally here and so are the AFO's!! I apologize for not having any pictures of her in it yet, but today her PT, Kim, came out to the house and did all of the necessary measurements to make sure the straps and pads were in the right spots. We also needed training on what to do and how to put her in it. It's a bit intimidating at first. So, she hasn't been in it much yet, but photos will be coming. There is a small problem with her AFO's being so fitted and tight. Our PT doesn't like them that way, so we have to make another appointment to get them adjusted. This isn't at all uncommon. I just want Alayna to be comfortable in them and learn to like them as much as she can! Right now they are too difficult to get her foot into and that does us no good. We are very excited to get her standing. For now, we are starting to do a few minutes at a time until she tolerates it longer. We are also starting at about a 45 degree angle and not completely upright until we know she is ready and can tolerate that as well. It's all about baby steps!

Other Miscellaneous Updates

Alayna has been loving bath times and sitting in her siblings old tub ring. For now it is working just fine. I put a bath sponge on the bottom so she doesn't slip around. I plan on looking for an alternative bath seat that will work for us down the road. As she grows, she won't be able to fit into this forever. Alayna has been sleeping really good (please, I hope I didn't jinx myself). I'm not sure what her problem was a few months ago, but whatever it was has seemed to pass. There is an occasional morning where I might wake up to a cry very early, but for the most part the pacifier fixes the problem. I love the light projector she got for her birthday last year from the Redlinger family and use it about every night. And she has a glow seahorse that plays music too. Love both of them! They help me buy minutes in the morning when I'm still getting ready for work.

Alayna continues to do well eating and drinking. She hasn't expanded her menu much since the last few posts. She loves any and every kind of oatmeal and will eat the entire packet on most mornings. It amazes me! Some days she eats more than others, but that is so typical of any kid. She still isn't quite ready for significant texture, but I keep trying. On average, I'd say she gets at least 15-20 ounces of fluid a day plus food.

I've been using Amlactin body cream on Alayna's legs and arms two times a day for about 2 weeks and I highly recommend it to anyone who battles bumpy skin. It hasn't completely taken the bumps away, but they are noticeably smaller and less red. I'm glad our dermatologist recommended it because so far it has been the only thing we've used and seen any results.

Alayna continues to be a joy to our family. She is a precious little girl and I enjoy holding her and hugging her. She is becoming more alert, watching me talk, grabbing at my hair, my earrings and my necklaces. Getting her to smile is much easier now and the kids are really enjoying her more too. Alayna is very sweet and we continue to say our prayers to keep her healthy and happy. May God continue to watch over her.