She loves the birthday cake toy!
Getting ready to eat!
Wipeout! She still doesn't mind it if she falls backwards....still very unaware.
Practicing our sitting! Doing better.June
In early June we were all done with school, including Alayna! She didn't qualify for summer school this year. The teachers do an assessment after each two week break that they have and Alayna didn't regress or take long to get right back on track. And to be honest I wasn't planning on sending her because it is only for 3 hours and it takes her 45 minutes to get there on the bus, it isn't her teacher that she is used to, and sometimes the therapists are not the ones she works with as well. Alayna doesn't respond to change easily and last year we did try summer school and it was torture for her. She didn't enjoy it at all!
So, instead I've been working with her at home on her sitting and standing. The Trinity HomeCare Products guy came out right when school ended and adjusted her stander so that she fit properly in it. Alayna seemed to have a big growth spurt and I wasn't able to squeeze her into the stander anymore. We do lots of play time and we are just trying to do our best to enjoy this summer and relax as much as we can.
July
This has been a great month for swimming so far! However, Alayna isn't liking the swimming pool very much (YET)! I had bought a special needs life jacket for her and I ended up sending it back because she threw a huge fit in it. I think it really restricted her movement and she hated that. I tried to put her into an infant type float the other day and it didn't go so well either. But we are not giving up! Alayna loves things that are familiar. I just think we are going to have to take baby steps to get her "warmed up" to the new pool. Lately I've just been putting her outside near the pool hoping she'll see it enough to recognize it and the surroundings. I'll let you know how this goes.
1p36 Annual Conference
Dana, Alayna and myself are headed to St. Paul, MN this week for the annual conference. It is being held on the campus of Bethel University. Approximately 30 families will be attending and many more wishing that they could attend. We are looking forward to reuniting with familiar faces and getting to know lots of new ones. It truly is a few days that help us to feel "normal" just like everyone else. We hope to gain some new knowledge on any topic that we can that will help us plan for Alayna's future. I'll be sure to post some pictures and re-cap the conference when we return.
Doctor Visits
This month we have 2 annual check-ups to go to. One is this week at University of Iowa Children's Hospital. Alayna will see Dr. Mathews, her neurologist. Currently Alayna takes a very minimum dose of phenobarbital for seizures. Alayna hasn't noticeably had a seizure since August of 2008. So, it will be interesting to see if the doctor wants to continue with the minimal dose or try to wean her off of it. At the end of the month we will travel to see Dr. Morgan, her developmental pediatrician, in Peoria. We'll see if he makes any new recommendations for Alayna. I'll keep you posted!
The Blog
I apologize for not keeping up with Alayna's blog. I hope to do better starting today! I'll be honest, Facebook gets a lot of my time and I know that isn't informative for everyone. Our support group is on Facebook and that is amazing because it is so fast and quick to talk to everyone.
New things with Alayna
Alayna has been sleeping awesome lately! She will usually sleep 10-11 hours a night. She doesn't nap too much during the day, but I can't be picky if she is going to sleep like she has been. She is doing better eating more things with texture. I can now feed her mac n' cheese and not have to cut it up. She ate 1/2 a grilled cheese the other day, but I did break it into pieces and put it in her mouth. Alayna loves to drink water! She will stand with assistance while holding her hands. If we support her at the waist she will collapse her legs knowing you are supporting her that much. We have to MAKE her stand as she still doesn't want to do it on her own. Alayna continues to love her musical toys and she loves her Ipod shuffle with her few favorite songs.
The entry following this is one that I had written a few months back but never published. So, you can see more of Alayna if you read on!
The entry following this is one that I had written a few months back but never published. So, you can see more of Alayna if you read on!
4 comments:
Love the new pictures -- I especially like the one with pigtails!!! Alayna is such a sweetheart -- can't get enough of her smiles and giggles.
Love,
Grandma Diana
She is adorable! You have a beautiful family. We live in Utah and my little guy was diagnosed just in April of this year. Big changes. Hope you have a great time at the Conference, we aren't able to make it. I look forward to catching up on Alayna's adventures.
It's great to hear from you guys. Alayna has made so much progress! Please give her a big hug for us. I wish we could make it to the conference this year but we'll hope to see again in the future.
Thank you for the updates. Sounds like you all are enjoying the pool and your busy summer. I am sure with all you have on your plate it was difficult finding the time to post. So enjoy your blog and being able to hear of Alayna's progress. Alayna is so pretty and those pigtails are so cute!
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