Swinging

The past couple of weeks have been really good for Nolan. His overall strength has always been on the low side, and he was still grabbing his crayons in an odd fist-grip as of two weeks ago. Within the past week, though, we've seen a few major gains in his coordination and strength. He was able to hold his crayon correctly the other day and maintain the grip for a few minutes. On Saturday, he pumped his legs and powered his own swing for the very first time.

With Matt, we took these little milestones for granted. With Nolan, however, each and every milestone is greeted with elation - and a sigh of relief. While he scored a ZERO on his motor skills evaluation during the first half of the year, he is gaining strength and catching up to his peers. I think his body simply couldn't gain strength when he was so ill with reflux all the time.

The little guy had his first tee ball game on Saturday. Matthew had to miss the game due to a conflicting piano lesson, so Nolan went with Daddy to the game. I was really happy that Dennis took a few pictures - there is nothing cuter than a little boy in a baseball uniform.

While the surgery stopped the reflux (at least, we think it stopped the reflux), the little guy still has stridor. He is also developing a disgusting, clogged up nose. It makes his stridor sound rather "wet."



Thankfully, his C-Pap does work to keep the resulting apnea in check. He wasn't using it on this particular night because the water had gone "off" rather quickly in the heat, and we got home from Buffalo too late to wash and dry the tubing. It was interesting, because his stridor alternated between sounding like a wet snore (in the video above) and the regular, higher-pitched inspiratory stridor that we normally hear. He'll probably have the stridor for a rather long time - the noise itself isn't dangerous, but the cessation in breathing can cause growth and developmental problems over the long term. I have a feeling the C-Pap machine won't be going anywhere anytime soon.

 I may not write as much over the next week or so - the little guy's transition from preschool special education to general (school-aged) special education is coming up and we have a meeting to prepare for!

We Have the Best School District, Ever

Nolan wields The Force at his IEP meeting

Some people live in school districts where it is an absolute nightmare to obtain services. Our school district is the opposite of that scenario - the special education department is an absolute joy to work with.

Nolan's IEP meeting went smoothly, and we obtained some push-in services from his SLP. We also obtained direct services from a teacher-of-the-deaf (TOD) once per week. For the first time, we are adding some real sign language goals to his IEP. Swimming lessons have proved that Nolan cannot hear in the water, which presents a very real communication issue. He is in that odd in-between hearing level state: he can hear (sans aids) in a quiet environment for a distance of about 5 feet. In noise, he hears almost nothing. Since we can't waterproof his hearing aids, we need an alternate communication method - so we have put in a goal for understanding and producing 75 "survival" signs.

Obviously, Nolan continues to be very verbal, and he has an auditory learning style. His remaining goals are for using the FM system in the classroom, filling in those odd language gaps (which have been noted by his SLP and TOD), and eliminating some articulation errors.

Since Nolan has a few other health issues, those are also mentioned on the IEP. He won't be eating in the cafeteria in pre-K, since it is a half-day program. Nonetheless, they included the dietary restrictions into his IEP. His medical information is also included, since he fatigues easily. Nolan looks very healthy, but he will completely slump to the ground and have to be carried at times - particularly in the afternoon. This is just something we are monitoring - it could be related to his apneas at night, or it could be something else altogether. He did have one of his fatigue-slumps during the meeting - he slid off his chair and his tears began. He ended up on Dennis's lap, and a cookie made him feel better.

We had almost finished the meeting, when the Special Education Coordinator watched Nolan holding a crayon. We know he has some low muscle tone, particularly in his hands. This hasn't caused any delays yet, but she was concerned with his grip (fisting the crayon). He passed an OT evaluation last year, but the team at the meeting wasn't really convinced - so they wrote monitoring for fine motor delays into the IEP.

We got what we asked for (hearing and language services), and some things we didn't think to ask for (fine motor monitoring/evaluation). The school district team really, really cares about their children - this is probably why we have the highest elementary school test scores in the region. The staff goes out of their way to ensure that every child has the best opportunity to learn and succeed.

I am so excited for Nolan to start Pre-K next year - we know he is going to excel in our amazing school district!