10.27.2010

Progress Report

Here's some more fun and exciting things Caleigh has done in the past week or so.
OCTorange
  • A couple of nights ago I laid Caleigh down for bed at her normal time. About 30 minutes later she was up screaming. I repositioned her and left the room. She continued to be upset. Of course, I am thinking the worse. Is there something wrong with her tummy? Has she stooled too little or too much today? Is she having seizures? So I get the iPad out and we sit down in the rocking chair. I asked her to tell me what was wrong. She said "I feel scared." We learned about scared last month in homeschool preschool. She really hasn't used the term since. I ask her if she had a bad dream and she went right for "yes." At that moment, I was in amazement that she actually just told me what was wrong. No searching, guessing and wondering all night. I was a little sad that she couldn't tell me what the dream was about, but finding out what is bothering her was half the battle. I told her that mommy and daddy wouldn't let anything happen to her and that she was completely safe. I laid her back down in bed and she feel asleep for the rest of the night. I'm not sure if this is the first time she has had a bad dream, but it's definitely the first time that we have found out about it.
  • For the past couple of mornings Caleigh has been waking up with a wet and dirty diaper. Usually I put her on the potty as soon as she wakes up and she stools on the potty. The schedule has been all off since we got the special needs potty chair. Going to the potty hasn't been a big priority the past couple of weeks. So last night I was talking to Caleigh before putting her to bed and we talked about holding 'it' when she wakes up in the morning. I told her to just yell for mommy and daddy as soon as she wakes up and we will put her on the potty. I told her no diaper changes, bed pad changes and clothing changes if she can just hold it. This morning she yelled, Eric and I pulled ourselves out of bed, and I whined about it like I do every morning. We quickly put her on the potty where she peed and stooled. Her night time diaper only had a few drops in it which is fabulous considering she is fed all night long. I guess a little pep-talk is all she really needed. I'll be giving the said pep-talk every night now.
  • We have increased the Artane dose again this week. So far so good.
  • At OT Caleigh walked into the building in her gait trainer. We turned around and headed back outside to walk along the side walk. Our OT had Caleigh tell her 4 letters using her iPad. There is a section in our Proloquo2Go app for letters that she has learned so far in school. She choose A, T, L, M. Our OT laid down a chalk 4 square area with with those letters in the squares. The she asked Caleigh questions about the letters and told her to walk to the right answer. One question was "what letter makes the ahhh sound?" Caleigh walked right over to the A. She asked about 5 questions and Caleigh got them all right. Our girl knows her letters and letter sounds.
  • Walking in the gait trainer has gotten increasingly better. Caleigh can now take 5 steps in a row without taking a break. That's legs alternating beautifully too. She seems to be picking up her feet more and placing them in perfect steps instead of dragging them. The most amazing improvement so far is her maneuvering. The girl barely hits anything and if she wants to back up or turn she does it. I put her in the gait trainer when I'm doing laundry, cleaning the kitchen or making dinner. Caleigh seems to walk more without the coaching, begging and watching. I keep an eye on her but let her do her own thing. She explores everything. She started taking paper out of our full recycle bins and throwing it on the floor and she's pulled our kitchen towel off of the cabinet door several times. It makes my heart happy. The other day she miss judged the dresser and bumped her head. The cry was sad, but at the same time I was giddy that she just experienced a "normal" toddler situation. I comforted her and then put her right back in the walker. She took off towards the kitchen like nothing had happened. We are very proud of her.

10 comments:

Mo said...

This post warms my heart.

britta said...

Holly! This is so exciting and touching! When I read about her having a bad dream, my heart sunk, but when I read about all her accomplishments, I got a big smile on my face!!!! You are a GREAT mom!!!

Missy said...

Wow! What an amazing achievement your gorgeous girl has made. I am so impressed with her ability to communicate through the use of her ipad. Thank god for technology!
I can so understand you being so very proud of Caleigh!

Carla said...

What great updates! Love that she told you about her nightmare. How great for you to be able to ask her whats wrong & not have to guess. That must be a greaqt feeling:)

Looking for Blue Sky said...

You know I so wish you'd been blogging when Smiley was small and I was floundering, I'd say Caleigh's story is inspiring families all over the world to keep trying. I am going to raid Smiley's account and buy an iPad for her birthday and I'm really hoping that it will be the solution to both her communication and entertainment needs - and totally appropriate for a teenager:)

Wherever HE Leads We'll Go said...

Love the updates! So glad to hear that Caleigh is doing so well. She is such a smart girl! I love to hear about her determination & strength!

suem said...

I've been a lurker, but had an idea that sounds strange, but might help with the head control issues.
When my daughter was in Elementary School, there was one girl who had what looked very much like a hula hoop attached to the back of her wheelchair headrest. It came straight out toward the front, parallel to the floor. I was curious what it was for and her mom showed me how it worked. When she took the hoop off, her daughter's head went down. When she put it back on, the head came up. The hoop apparently gave her some feedback about where her head belonged and helped her to keep it up - not physically, since the hoop was far enough away that the child's head never touched it. But it apparently worked on a peripheral vision-unconscious level.
SueM

Cjengo said...

Wow I am really in big tears.

Laura Gilmour said...

Beautiful child and being able to communicate is opening doors for her. I'm wondering if she'll eventually ditch the diagnosis of cognitive disability because she seems right on target/maybe a little ahead for her age when asked to do cogntive tasks such as letter identification or answering a question, she just has the physical inability to speak or control some of her movements. It is sometimes difficult to accurately measure intelligence in children with significant physical disabilities. I think they often get get grossly underestimated.

Laura Gilmour said...

Oh, I just read the blog description. She's only three, not four or five and already knows some phonics. Most kids that age may be able to sing the alphabet song but would have no real concept of letters and sounds like she does.