10.16.2010

The one where there are updates

The huge outpouring of support and hope from the WSJ Article has been amazing. The article has been translated into Italian, Spanish and a blog reader in Australia commented that the article was in her local paper. It's exciting to know that maybe through this blog and through the article we reached someone out there looking for the perfect solution for their non-verbal child.

Even though Caleigh's sweet smile has been traveling the world in print; we haven't changed anything we are doing down here in the real world. Caleigh still has therapy and appointments galore.

This week we met again with our local representative for Prentke Romich, whom I just love. With Caleigh's language skills being normal, we wanted to re-look at a devise that would give her all the words a 3 year old would use. I've said it before on here, but I love the PRC language system, Minspeak. It's real sentences and proper grammar. Caleigh tried her little heart out, but the big boxes of 45 squares were just too much for her fine motor skills. It was exhausting to watch just how hard she was trying and it was even more heartbreaking to watch her fail over and over. We've seen what we need to work on fine motor wise and for now the iPad is still the best solution for Caleigh and our family.

I've learned in the last week or so that I need to keep adding new choices to Caleigh's Proloquo2Go app. She gets bored easily and I'm noticing it more and more lately. If we change up a location or add a new fun option she wants to tell everyone the new items. Just like speaking new words for the first time. Caleigh wants to repeat it over and over.

Caleigh's boredom crosses over to her world of therapy as well. The past two weeks we have been walking up and down our driveway sometimes twice a day. Music must be playing at all times for any sort of success and she has to be in the shade. The end of last week the new had worn off and she was done. Caleigh will drag her feet and hang her head down when she's not interested. The other day I loaded up the gait trainer and we went to OT. During OT Caleigh walked around outside the building and back to the van. She was all smiles and perfect pretty steps. I'll be loading up the heavy contraption a lot more. The KidWalk is our key to age appropriate peer involvement.

Here's a video in her KidWalk. The first section Caleigh is wearing sock-shoes with no support. The second section Caleigh is wearing her Piedro Boots. Our equipment company is bringing out more supportive headrests this coming week so that Caleigh can't throw her head backwards while walking.

Caleigh and I both got our flu shots this week. Eric will get his this coming week at work. Caleigh actually did pretty good with the shot. She cried for a second and then gave the nurse the saddest, most enduring lip pout I've ever seen. Her feelings were definitely hurt.

The Artane journey is still going really well. Caleigh is tolerating the increases in stride. Just this morning she got out of her tomato chair again. Total count = 3 times. Caleigh can also wiggle commando crawl about 3-4 feet at a time without rolling onto her back. The Artane is making her more steady so she can stay on her belly longer.

The feeding situation is back to where we were before the adjustments and Caleigh's stool is back to where it was before as well. She just couldn't handle the quick changes. So now we will slowwwwwly increase the volume and decrease time on the pump. Slowly.

We took Caleigh to the dentist this week. She got a check up and had her teeth cleaned. She did a superb job and was able to sit still so much longer this time. She also didn't bite the hygienist repeatedly. Last time it took 3 visits to get everything cleaned. This time it took 30 minutes. Progress in the right direction.

6 comments:

Jennifer said...

Hey Holly! Love the video. We tried out the Prentke Romich device too, and I really liked it, but Wade couldn't activate the buttons either. He uses his head on the iPad, which is great, but I so wish we could get better use of his hands. Maybe in time...

Has Caleigh ever used a Benik vest to help support her trunk? It's amazing how much better Wade uses his other equipment when he doesn't have to focus on trying to stabilize his trunk. It's just a neoprene vest that velcros. It can get a little hot, but he sits up so nice in it. Maybe you could try it on Caleigh one day and see if it would help her.

Anonymous said...

You're a brave mom. Keep fighting.

My girlfriend has two mildly autistic kids, and sometimes it takes everything we've got just to keep things from sliding backwards too fast...Sisyphean...that's the word.

Caleigh and I share a birthday. :)

Carrie said...

I just KNEW she would be super famous once the world heard about her amazing strides using the iPad. Congrats to you for getting the word out, and to Caleigh for.. well, everything! She's amazing!

The Henrys said...

I, too, love the PRC program. Gracie has been borrowing a device for a few weeks now and is surprising me on what she knows and can do. Have you tried the key guards for the device? Gracie is using the Vantage Lite and there are different size key guards available.

Jeshyr said...

Hey there, I just wanted to let you know that I've added your blogposts about Caleigh's iPad use to the iPad User Stories Round-Up at ATMac. The address is:

Let me know if there are other people I should be adding too - I'm sure you know more kiddos than I do! The link is:

http://atmac.org/round-up-ipad-user-stories

Cheers,
Ricky

Wherever HE Leads We'll Go said...

Love the video! She looks like she is doing great with walking.