Friday, June 10, 2011

The STARband Helmet Graduate

Orion and Thomas during Memorial Day Weekend. (Photo by Jennifer Yost Ortiz)


Camping siblings.










Orion showed a clear sign he has problem solving skills. On May 16th, to eat a sweet potato puff, he picked it up in the palm of his hand from the tray, he wiped it off onto his bib until his fingertips arrived at the puff and picked it up and put it in his mouth. Again and again. Half of the puffs arrived at their final destination (either his mouth or on the seat, you can't go wrong with 50%).

Orion's STARband was retired on May 18th. His total head circumference grew 2 mm over 2 weeks and his asymmetry stayed the same even though I only managed to get the helmet on his head 3-6 hours a day if I even put it on that day. While wrapping up the appointment, Orion happened to smile big-time and I "interpreted" for him to the cranial remolding specialist, "That's good news!"

On May 24th, I took Orion to a rehabilitation service location in Laurel, MD for a physical therapy evaluation. This was done through Orion's doctor's referral. The evaluation showed he needed PT services, so we started right there. We are to go there for 30 minutes every week for the next 12 weeks. I am pleased with our efforts for Orion to get plenty of PT services! Orion now gets it from 3 locations: Parent-Infant Program at Kendall School; Prince George's County ITP home visits, and now this one in Laurel, MD. I could already see improvement. At PIP, Orion was seen willing to put his hand down on the ground for a couple seconds while sitting up (it used to be an immediate withdraw upon touch). Orion CAN hold his head midline quite well if he's sitting up with our support and his upper body is leaned forward. If he's upright (back at 90 degrees), his head flops back after a couple seconds. It will stay midline if we hold Orion's shoulders with our hands and use a few digits to hold his head forward. Yes, Orion's growing, he's getting used to/familiar with what his body can do, thanks to PT services.

Orion's clear scleral shells arrived via FedEx late May and I put the shells in. So easy. :) I feel so much better seeing his little blue eyes moving around knowing the access is there for light. Orion will visit the ocularist at the end of June.

2010-2011 PIP at Kendall is done for the summer but not quite done for Orion because there is ESY (Extended School Year) at the PIP room. We will continue to get home visits every 2 weeks from Prince George's County through the summer except for when we take off for Washington state. He'll be back to PIP in the Fall, I anticipate more participation from Orion, especially touching and exploring the environment. In the fall Skyler's moving onto 2nd Grade and Anastasia will finally start "formal" education: Kindergarten! Anyway, this afternoon at home, Skyler plopped a 14-inch long wrecking ball truck on Orion's lap and Orion immediately checked it out moving his hands along the length of the toy.

Thomas and I will be attending a Summer Institute workshop sponsored by CBSS (Connections Beyond Sight and Sound) at University of Maryland the week of June 20-24. The topic is "Communication Development and Instructional Strategies for Students with Deaf-blindness and/or Severe Disabilities", presented by Dr. Linda Mamer from the U of BC, Canada. (I remember going there to pick up my brother Jeremy from a hockey camp at U of BC. Really cool.) I'm looking forward to plenty of information... perhaps like standing in a golden glitter confetti shower and walking out with whatever sticks to me. :)

***Anastasia lost her first baby tooth on Wednesday night! (6/8/2011) This tooth she lost twice onto the floor that night. The first floor she lost it on was also white, oh boy, but she still found it again. The tooth fairy actually came even when she went to bed soooo late. Skyler saw what the tooth fairy left behind and is working more on his already-so-loose 2 front lower teeth. Trying to make a big haul, eh, Skyler? :)


Skyler and a longtime friend plays with water guns. (Photo by Jennifer Yost Ortiz)

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