Tuesday, February 1, 2011

The Fun Part

So the last week has been a little crazy for us. Jailen is having some pretty bad headaches again & I'm not sure why. Seems like it's every other day. The 1st one was in the middle of the night. His whining woke me up as he was rubbing his head. I noticed he was very sweaty. I gave him some Advil & we were back to sleep in no time. It wasn't a big deal. When we woke up for the day he seemed fine so I bathed him again (since he was sweaty through the night) & off to school & work we went. As soon as I logged in my computer at work I got a phone call that he was crying, sweating, & holding his head again. Without hesitation I left work & brought him home. Advil, breakfast, nap, play. He was fine. Next day no issues. The following day there was another headache, this time with vomiting. By the morning he was fine & went back to school with no problems. That evening he looked pale & kept complaining that his back hurt. Then there were a couple of problem free days (the whole weekend). Monday, no school. Crying with a headache again. He ate breakfast, took 2 naps, skipping lunch, & took over an hour to feed him dinner. He seems sluggish & tired. No fever, no sinus trouble, no coughing. Absolutely no other symptoms. Many people would have taken him to a doctor or ER by now, but Jailen's situation is a bit different. We've done the whole running to the ER a million times with no answers.

The tricky part: In addition to everything else, Jailen has a rare condition called Slit Ventricle Syndrome. The ventricles of his brain have collapsed & are now "slit-like". This is most likely due to an overdrainage of the shunt that he has. Symptoms of this syndrome resemble a shunt malfunction. If I'm not mistaken, only 12% of people who acquire shunts during infancy actually ever end up with this syndrome. Only 6% of that 12% actually require the surgery that Jailen underwent in May 2007. It's extremely rare, so most doctors know little about it. We were lucky & were seeing Dr.Richard Coulon with Children's Hospital at the time. Sadly he has moved to West Virginia. We miss him!! Even he had only done the bilateral cranial decompression surgery once before.

Anyway, because the ventricles of Jailen's brain are so small now, most doctor's look at his scans & will immediately say, "Everything looks good!" That's why it makes no sense to run him to the ER everytime he has a headache &/or vomiting. It's tricky & complicated. I'm thinking about having a new CT scan done, requesting the 1st one done after the surgery of 2007, and mailing it all to Dr.Coulon in West Virginia with hopes that he'll have some free telephone/mail advice for us.

Tuesday, January 25, 2011

Heart-breaking Acceptance

This has been a rough week for me & it's only Tuesday!! I had a parent/teacher conference with Jailen's teacher yesterday. It went as expected, but was still a sad day. Let me back up & explain a bit since I haven't blogged in a year....

Jailen is 5 now & this is his 3rd year in the Preschool Early Intervention (PEI) class at our local elementary school. Last year I pushed for inclusion in Pre-K, got it, & he spent the afternoon (nap, snack, & storytime) with his "normal" peers. He did great, of course, so this year I pushed for more inclusion in the Kindergarden class. I knew this year was going to be the future teller year, if you will. Real classwork, real homework. He's been going to Kindergarden (just started 3rd 9wks) from the time he finishes breakfast until after math immediately following lunch. I arranged it so that all therapies get done in the afternoon when he's back in the PEI class, sure not to disturb him in the "regular" class. At first he seemed to be keeping up & I was getting excited. Then the homework papers started getting a little more difficult, math came along, now reading, & I saw him falling behind at home. I knew he wasn't going to be able to handle regular classes & learning at the regular fast pace. I kept my mouth shut the entire 2nd 9wks hoping something would change. It hasn't. Then his teacher sends a note home that she wants to meet with me. I immediately knew it would be regarding this. So, we're sitting there & she asks, "How do you feel Jailen is doing?" The tears started falling. I know he's not keeping up but I want him too so very bad. We agreed that he needs more time in PEI to work on his IEP goals & less time in a class that's already leaving him behind. We discussed his vision, which needs to be checked again & may call for glasses this time. We also discussed next year. That's what really broke my heart. I wasn't prepared for what came next & have been crying for 2 days because of it. He can't stay in the same school he's been at for 3yrs because they don't have a special education class for students beyond Kindergarden age. Now he has to be uprooted from everyone he knows & has grown to love over the years & be moved to the unknown. People he doesn't know. People I don't know. I'll admit, it's a very scary thought.

Anyway, I know we'll overcome this just like everything else. Life with Jailen has always been full of blessings in disguise. Maybe the next school we send him too will be where he flourishes. Maybe he'll still be able to keep up in a regular class somewhere down the road. Or, maybe special ed is where he's meant to be. Either way,