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.

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,

"Normal" kids

Why does it hurt to meet "normal" kids Jailen's age? I don't wish for them all to have the issues that Jailen has, and I wouldn't change him if I could. I don't get it. Will I ever? Will it ever stop hurting?

Medications

Jailen is currently on 3 medications. He takes Baclofen which is a muscle relaxer, he takes Phenobarbital for seizures, & he takes Melatonin to help him sleep. My problem is that he doesn't swallow pills/tablets. He's just now starting to eat whole table food. The liquid form of Phenobarbital is so rediculously filled with alcohol that when I tried to give him that, he began throwing up before he even took the whole dose, then he smelled like an alcoholic for about 3 days. No kidding. So, what I used to do was get all of his medications in tablet form, buy some sugar syrup & liquid prescription bottles from the pharmacy, & my sister, who is a senior pharmacy technician at our local Walgreen's, would mix the tablets into liquid for us. This was somewhat of a hassle. It got very aggravating because then I would have to hunt her down & remind her 2, 3, 4 times that we were getting low & needed her to mix us up some more. Sometimes it was the last minute when he was ready for a dose that she'd come mix it. That was too close to call for me because these are some serious medications & he can't miss a dose. Anyway, I found a small independant pharmacy that would mix the medications into liquid at no extra charge as long as we filled the prescriptions there as well. I went for it. I thought how much easier is this!?! Well, it's been three months & last night Jailen took his last dose of Phenobarbital from a prescription that was supposed to last until the 10th of March. This means it was mixed incorrectly & he's been taking a higher dose than what was prescribed. Who is to blame for this? ME. Why? Because I've been unaware of how much liquid total we should have to make the month. Why didn't I think to monitor that?? I feel like such a jacka$$! With Jailen's prescriptions being mixed into liquids for so long, I only know how much liquid he is to take each night. I don't even remember the original prescription dosage in mgs anymore. I find myself to be slacking where it is the most important. I can't believe I've done this. Jailen's ok, thank God, but this could've been bad. At least it's only been about 3 weeks. Wake up call! Time to regroup & start over.

Say Thank You

As I sit here writing this, Jailen is telling my nephew to thank me for a cheeseburger we brought him 2 days ago. He is teaching all of us how to be polite & considerate. If someone sneezes, he says "Bless you", & waits for a "thank you" in return so he can follow with his "you're welcome". I've never seen a child so sweet. This is one of the many many things he does that just warms my heart. It also makes me wonder how something so horrible could happen to someone so special. I've come to believe, though, that he is this way because of all he's been through. Had he not had to endure so much so early, he may never have been this sweet. He does have his sassy moments, don't get me wrong. Like yesterday it was nap time, he didn't want to go so he started screaming, "MAKE ME"! LOL It's cute just because he can do it! How do you make yourself "discipline" a child like him, though? I haven't figured that out yet.

Hectic Life

Ok, Ok, I so meant to blog on a daily basis, but things get so hectic I can't seem to find the time. I need to make this my "first thing in the morning" regimen, or a "bedtime" blog. I originally had so many different things that I wanted to post about but it took me so long to get here that I can't remember any of them. This week Jailen is out on Mardi Gras break & has been at home with me since Wednesday of last week (he was out w/a fever too). I didn't take him to any parades, although I really really wanted to. I sometimes find myself disabling him more than he already is. I think he could handle it now, but I didn't go "just in case". I have to stop doing that. He should be pushed more than normal, but I can't seem to stop babying him. Like the other evening we went out to dinner. I ordered him a grilled cheese sandwich, cut it into fours & proceeded to feed it to him. I clearly stated that he wanted to do it all by himself, so I pushed the plate closer to him & let him go. He took the first square & tore it up into little pieces. He then started on the second square so I told him that he had to eat it, not just play with it. "I AM!!" he said. So I let him go. He tore the entire sandwich into little bite-size pieces, then ate it one little piece at a time. I had no idea he could even do that, or that he would do that. I was so proud of him I couldn't stop saying it the whole time he was eating. He ate the entire grilled cheese sandwich all by himself. My little baby is a big boy..and WANTS to be a big boy. Why can't I let him?

Jailen enjoys football too!!

Well tonight history was made. The New Orlean's Saints won their first ever Superbowl. I'm not a football kinda gal, but it was exciting watching the kids get into it. Jailen looks forward to watching football, I think because his PawPaw & cousin Lane like it so much. During the game he was shouting, "Who Dat Baby!!", & giggling his little butt off. My daughter, Randi Jane (2), was waving her fist in the hair yelling, "Go Saints!" What was life like before kids?? I don't remember, but I sure am enjoying it with them!