Tuesday, May 29, 2012


Life has been a little busy lately, so I haven't been great at posting updates to the blog. I'm writing for the Apprenticeship Program through Hubpages, which provides both an up-front payment for articles and (more importantly) training on how to write for an online audience. My Hubpages account doesn't pay any major bills yet, but I do make payout every month. In this house, every little bit helps!

In any case, I have been writing for that program, planning our summer activities, and getting busy with life in general. This weekend, we set up the pool and the boys had a blast playing in the water.

I am so behind with everything - I completely forgot to post this adorable video of Nolan's preschool class singing for their Mother's Day program. Four year olds are adorable.

Nolan is still struggling with the chronic diarrhea, and a few other moms have suggested Dumping Syndrome as a cause - this happens in about 30% of fundoplication cases. He doesn't seem to get shaky or display any other effects of hypoglycemia, so I'm not sure this is the problem. On the other hand, I'm not sure what the problem could be - we'll talk to the pediatrician on Thursday.

Nolan also had a random fall on the bus today. He does this occasionally - he'll fall for no apparent reason. It's how he got the gash above his eye a little while ago, and also how he managed to get a giant goose-egg from falling flat on his face in our driveway. The school nurse called me to say that he had fallen and hit the back of his head pretty hard, but that he also seemed OK. The bus driver talked to me when he dropped Matt off later in the day and was pretty shaken about the whole thing. We're so used to Nolan's quirks that I forget how scary it can be for someone else to have something happen on their watch. Still, no harm, no foul. Nolan seems fine and none the worse for wear, though I suspect the bus driver may be taking a Xanax tonight!

Saturday, May 26, 2012

Random Update

Nolan is doing pretty fabulously this month. No signs of reflux, which is fantastic, and he's been pretty happy. We aren't using the g-tube to vent quite as frequently, which means his stomach is finally settling into a more normal "routine" following the fundoplication.

He is still struggling with weight gain. He's down to 32 pounds, which is hitting the 5% mark on the growth charts. His eating is hit-or-miss, and he's been struggling with chronic diarrhea. I'm not sure what is causing the diarrhea, but I will have to talk to his pediatrician about it, because it certainly isn't helping on the weight front. He still has stridor, of course - we can hear it when he doesn't use the C-Pap at night (he was sick last week and didn't use it for a few nights):

 Despite the stridor and weight gain issues, however, he is fairly healthy. He definitely has a rosy glow to his cheeks and the fundoplication has been helpful to him. He doesn't choke as often and his little nose is clear - and he has been free of ear infections since the surgery.

I filled out his kindergarten registration packet on Thursday and sent it back to his school. Nolan is behind on his immunizations because he had the flu shot 2 weeks before his four year old well-child visit. They didn't want to interrupt the immunity forming from the flu shot, so his four-year-old jabs were put on hold. Then he had the surgery, got a few nasty viruses, and we were on vacation. I called the pediatrician last week to get him in for the shots, since he'll be five in a couple of months and he'll need a whole new round of immunizations.

We're off to enjoy a fabulously warm Memorial Day weekend - we take the sun when we can get it in these parts!

It's pool time!

Thursday, May 17, 2012

CSE Transition Meeting

When students transition from the preschool age group setting to the school-age setting, a special education transition meeting must be held, since the service providers change from the county to the school district. Nolan's transition meeting was today, and he moved from CPSE (the Committee for Preschool Special Education) to CSE (the Committee for Special Education).

One of the hard things is determining exactly what Nolan needs. He's quite bright and developmentally on track. He technically qualifies for an IEP in two different ways: the first being "hard of hearing" and the second being "other health impairment." His primary disability is the hearing loss (this affects his education the most), so this is his classification in the school district.

Our elementary school is fantastic and has a Teacher of the Deaf (TOD) on campus. Nolan has some vocabulary gaps and some language processing issues (some of this is due to his fluctuating hearing loss, which has been known to cause central auditory processing disorder - CAPD - in children). In children who are deaf or hard of hearing, this problem isn't referred to as CAPD, but is simply considered an effect of the hearing loss. Nolan needs some pre-teaching and some work on processing phrases, multiple step directions, and auditory discrimination skills in the classroom. The team decided that 30 minute daily sessions with the TOD would be appropriate - these sessions may be push-in or pull-out. "Push-in" means that the TOD will go into the classroom with Nolan, and "pull-out" means that Nolan would be pulled out of the classroom for a one-to-one session.

The biggest debate was speech. Nolan has some speech errors, but the majority are developmental in nature. He has W for L, misses S occasionally, and has the normal speech errors of a four year old (difficulty with R and TH). He does sometimes miss the D sound in words, and will confuse M for N. These errors are related to his hearing, and can fluctuate with his hearing level. Some weeks he has a solid D sound, other weeks it nearly disappears.

In the end, we decided to keep speech therapy, at least for Kindergarten. If the developmental errors disappear and his articulation becomes clearer, then we can always drop it. We'd rather not get behind the 8-ball with his speech, as it is easier to prevent a problem than to remediate one. He'll get speech twice per week at 30 minutes per session, which may be in (very) small groups or individually, as the speech language pathologist sees fit.

There are also a few "alerts" put into his IEP - things his kindergarten teacher should monitor. Nolan's gross motor skills are borderline, and his fine motor skills have come along nicely. Still, we want to watch for fatigue and make sure he is able to develop age-appropriate skills. He still can't hop on one leg like his peers can (or throw a ball well), but that may change over the summer (hint: Mommy Boot Camp is in session this summer).

The meeting went very well, and I am so thankful that we live in the best school district in the area for kids with disabilities. The team at our school really ensures that every child is given what they need to excel!

Sunday, May 6, 2012


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!