"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!

Another EEG. A mom can hope.

Well, Jailen had an EEG this week. He's finished with his 80 sessions of HBOT & we've seen so many improvements that I thought there may be improvements there as well. He takes Phenobarbital every night, & I just hate that he has to take prescription medication. He's only 4!! You know you see how when older people need to start taking prescription medication, it just snowballs. They take one for a while, then they have to take another one for the side effects of the first one, & so on. I don't want that to happen to Jailen. Anytime there's a possibility of reducing medications, I jump on the idea. So anyway, I'm very excited to say that he did NOT require sedation for the test!!! He was a very big boy & enjoyed chit chatting with the nurse while the procedure was taking place. He's getting so big. I'm so proud of my lil buddy. I was watching the computer monitor & the lines were going crazy. The EEG looked the same as it did 2yrs ago. I almost cried. I started to get upset, then I thought to myself. Thank God this one medication controls his seizures as well as it does. I can personally think of 3 children that I know of who are on 2-3 seizure meds, & still have seizures. And Jailen's been making so many awesome improvements lately that right there in the hospital room I decided it doesn't matter how scrambled things look on the inside. He's still his same blossoming self on the outside & he's doing way more now than we ever could've hoped for. So, I didn't let myself get upset. Instead, we continued discussing the girlfriends he has at school (5)! :)

Jailen's Story

Well, I guess I should start at the very beginning. I had a perfectly normal, uneventful pregnancy. Three days before Jailen was born I fell off of the bottom step & landed on all fours. I didn't hit my stomach, I caught myself. The very next day my blood pressure began to rise, & I was feeling a bit crampy. I was sent to the hospital for nonstress tests & ultrasounds, then quickly released because everything looked normal. Same thing on the next 2 days. On the 3rd day around 5pm I went into natural labor, contractions 5 minutes apart, so I went back to the hospital. The nurse said I was only dilated 2cm so we would wait a while before calling the doctor. My blood pressure was rising & Jailen's heart rate was dropping. At one point I remember looking over at my mom & telling her that something wasn't right because Jailen's heart rate was down to 33. The nurse came in around the same time to say the same thing & that she had already called the doctor & he was on his way. Finally, at 3am they did an emergency c-section. Jailen wasn't crying & he was completely blue. Come to find out there was a true knot in the umbilical cord cutting off his oxygen. Noone knew this ahead of time. Anyway, he had to be resucitated & was suffering from seizures & brain hemorrhage. Over the next few days we discovered that he was retaining cerebrospinal fluid on the brain & needed a VP shunt. At 1 week & 1/2 old he was transported via ambulance to a different hospital. We stayed there for almost 2 months. To make a very very long story short, he's been diagnosed with Cerebral Palsy, Seizures, Hydrocephalus w/VP shunt, Slit Ventricle Syndrome, Scoliosis, & he's farsighted with some slight optic nerve atrophy on the left eye. He's had one shunt revision. He also has had bilateral cranial decompressions in May 2007 as a result of the Slit Ventricle Syndrome. The shunt had apparently over drained, causing his ventricles to collapse & become slit-like. This was the worst! He was suffering from what appeared to be shunt-malfunction-like symptoms 5 out of 7 days. It was miserable for him & for me & the family. I opted for the surgery. The removed the top of his skull, shaved it down about a 1/4" & then put it back. This gave room for the normal amounts of cerebrospinal fluid without causing him to be so sick. Just recently, we got the opportunity to try HBOT (Hyperbaric Oxygen Therapy). He has done 80 sessions with drastic improvements. He is in a wheelchair, wasn't speaking very well (I was pretty much the only one who could understand him), & he was on a pureed diet only. After the HBOT, he is now eating regular whole food, he can speak in 6 word understandable sentences, he's spelling his name by himself, & just last week started to pedal a tricycle all by himself. He is a miracle. This has been a very difficult experience for both of us, but he has definitely shown me how to be strong & patient through it all. I wouldn't change him for the world. I do wish I wouldn't cry so much, though. :) lol

My First Blog :)

Well, I'm very new to this "blogging". I've been following other blogs for a couple of weeks & very much enjoying them, so I decided to create one of my own. I'm going to start with Jailen's story from birth, but that's going to take a while (and some tears I'm guessing) so I'll have to work on that one later when the kids are down for the night. I'm very interested in meeting other families with special needs children in my area. Louisiana/Mississippi Please leave a comment if you are nearby & would like to have a playdate or something similar.