Developmental Assessment & Other Updates

Wearing her new outfit!

We love purple! Oh, and another bow!

Mom is still stalking me!

Going to Lori's (babysitter) on a chilly morning!

On Monday this week we headed to Peoria for Alayna's developmental assessment by Dr. Morgan. He is a developmental pediatrician and is another piece of our puzzle. We must keep all the professionals up to speed on what is happening with Alayna so that our "plan" is acceptable and known by all. He asked our concerns first and my two main one's were her hearing and her flattening head in the back.

To address the hearing, Alayna was to have another ABR test that afternoon. However, she came down with an ear infection last week and this was going to construe the results. We were told that she would have to repeat the test no matter what, so we decided to delay that until their next opening which wasn't until November. I am not too happy about having to wait, but we don't have much choice. I pray that her ears will be clear enough to do the test. Alayna is not the greatest candidate for tubes in her ears because she has such tiny ear canals. The doctors would have to use very tiny tubes and if they get clogged with wax we would be back to square one. I'm not sure what the best answer is right now regarding that. She has already had 3 ear infections and I'm sure she'll have plenty more. That is another worry because ear infections do occasionally affect hearing. We don't need that!

My other major concern is the way Alayna's head is flattening out in the back. She can't sit up and probably won't sit unassisted for quite awhile. And even then it won't be for long periods of time. It is frustrating, but in due time. We try not to get discouraged. This is just how most of these 1p36 kids develop! They have a unique timeline all their own. Anyway, she spends a majority of time on her back. She either sits in her car seat, bouncy seat, or sleeps on her back. It is unfortunately altering the shape of her head and it is really flat. We try and change her position when we can, but there just aren't many options. For normal developing children this wouldn't be too much of a concern. But Alayna is special and we need to intervene if possible.

So, Dr. Morgan agreed and referred us to a plastic surgeon in Peoria. We go down to see Dr. Elwood on Monday, October 22 for an assessment. He is part of the pediatric Peoria Surgical Group. Add another doctor to the list! From what I was told, he will assess her to make sure her suture lines (bones) in the back of her head are still open and haven't closed/fused shut. If they are not closed he will make a recommendation which would more than likely be to have a helmet made. I'm really pushing for one. Especially since she is at a babysitter during the week and at home on the weekends. Why not have something that will help round her head out and not cause an issue in the future? We would see another specialist who actually makes the helmet. If the sutures are found to be closed, we were told things could still be done, but it would require some minor surgery to open them back up again. Say a prayer that they are still open. I'll keep you posted on this development.

To get back to Dr. Morgan's assessment. He thought she looked great and was definitely not malnourished! She is about 17 lbs 6.5 oz. He was pleased with her tone and noted that her tone in her legs is good. He wants our main focus to be getting her head stronger and rolling. Tummy time!! From his observations and what we told him, he put her at about a 2-3 month development level. I truly expected this and I'm okay with that. Again, time is the key for her. And patience is the key for all of us. I also knew he would throw out the term "MR" or mentally retarded. It is the reality of the situation that most chromosomal abnormality kids fall under this category. Alayna will likely fall under it too. It is unfortunate that society has put such a negative connotation to those two words. I admit, I'm guilty. I've used it negatively before, but never again. Just another example of how this experience has placed a huge mark on my heart. We will return in 9 months for another assessment unless we feel things aren't going too well. Dr. Morgan is happy with the "plan" we have for Alayna right now.

One month until our 1p36 Florida trip to meet all the experts....the parents! I am getting excited and looking forward to this so much. I can't wait to fill all of you in on our experience. I have big hopes of bringing back valuable information to all our therapists and doctors.

One other change that has taken place is that Alayna now takes 5 oz bottles with only 2 tablespoons of rice added to it. That is significantly less thickened than what she was normally taking. Thanks to Auntie for trying it and telling us it worked. So far she is adjusting well and drinking takes less work because of it being thinner. It's also good because she is getting more liquids down than what she was before. She is also sleeping well in big sister Alexis's room. I have the monitor on, but rarely have to go in to check on her anymore. I think it was more of an issue for me to move her than it was for her! She continues to track objects better and sometimes swats at things. I can't wait for the day she actually reaches for something because she wants it. Alayna responds the best to faces and when you are down close to her talking directly at her.

Alayna has another PT session on Monday, October 8th and thanks to Columbus, I get to take her and go! I'll update you on her progress. I've mentioned the possibility of getting a tight vest to help her sit. Dr. Morgan said he is not familiar with it and questioned whether we thought it really worked. I'm not sure because I haven't seen it. But my guess is that it's a "temporary fix." Kind of like a girdle or tight pantyhose when you wear a nice dress...it holds it all in, but only until you take it off! Hypotonia (low muscle tone) is probably always going to be evident in Alayna and the only way to improve it is to gain strength through exercise. Dr. Morgan encouraged us to give the company a call and ask for a free trial of the vest for a few weeks. If we thought it worked, then we could buy it through our insurance company. I'm not sure what the exact plan is yet.

Have a good weekend everyone. Enjoy those little moments that make everything worthwhile. Annette, Audrey, Alexis, Diana, Denny and myself are walking in the Buddy Walk this Saturday to support Down Syndrome. It is in memory of Nate Hornbuckle, the little guy I posted about in early August. Again, this is another example of how this experience has made a lasting impression in my heart.