Neurosurgery Check Up

Jack had his yearly check up with his neurosurgeon yesterday.  I braved it on my own with both kids...I packed a bag full of snacks, toys, drinks, and diapers and we left around 9:00 am.  

Jack was instantly in a bad mood when we got to the waiting room.  Morgan ran around and made lots of friends while I tried to chase her and keep Jack calm.  It just wasn't happening.  He nearly busted out of his wheelchair a few times -- when he's mad he's soooo strong!  Luckily our wait wasn't too insanely long!

It's always nice to see this doctor -- he's the only dr. left on Jack's team that has been with us since Jack's birth.  I explained the situation and how Jack has really emotional days filled with crying, head banging, and screaming but then can go several days and have none of those things happen.  It concerned him enough to think it could be shunt related to send us for a CT scan that same day.

We got the orders and went downstairs to the imaging center...and waited...and waited...and WAITED.  It was horrible.  I thought of calling Jason and begging him to come over and help....but I didn't want to do that to him and of course the minute he'd get there would be the minute they'd call us back.  There was something with a form or paperwork -- they were working on getting it straightened out.  I though about leaving but knew we couldn't.  An angel of a woman (I didn't even learn her name) befriended Morgan and played with her so I could try to calm Jack.  It wasn't happening.  I thought so many times "I can't do this!!" but of course there's no choice!  Since the room was closing in on us, I took the kids out to the hall way.  Morgan had a blast running up and down the hall and Jack was playing some kind of game with the vending machine!  It's something I really don't want to repeat for a very, very long time.

Several hours later it was Jack's turn.  I could not go in with him because they do not allow children in the CT scanning area.  The brave boy did so well.  I am so proud of him!  He held still and listened as the machine did its scanning.  It took just a few minutes and we were finally SPRUNG!

Both kids fell asleep on the ride home and I was just trying to shake the stress.  I stopped once because I though Jack was starting some seizure activity -- but he was only sleeping.  We got home around 4:00 pm and the Jack napped while Morgan played and watched the Backyardigans.  It's no wonder she wanted to relax -- I think she ran several miles yesterday!  lol!

So I called this morning for the results of the CT scan and the dr. said his ventricles look great and even a little smaller than the last scan.  So it's good news!  He said if we can't figure out what's going on with Jack we should call him and he'll get us in for another scan during one of the episodes...he really doesn't think it's shunt related though.

Jack was excited to go to school this morning and we had to rush, rush, rush because we overslept!  We managed to catch the bus just in time!

So Morgan and I are taking it easy today and tackling the mounds and mounds and MOUNDS of dirty laundry.  How do 4 people dirty THAT many clothes???  I will never know...

Ups and Downs...

I've been slacking in tracking Jack's behavior via the blog -- I guess because part of me feels bad for needing to share the not so great moments...but that's what this journey is!

This weekend was very trying.  We've discussed all sorts of reasons and tried to figure out if there were any specific triggers to those days where he's completely off and banging his head and shrieking with frustration and anger.  One thing we've noted is bowel habits.  When he's constipated he's more prone to meltdowns...has this resolved the issue?  No, but if we can really stay on top of keeping him regular it may, just may help ease what's been going on.  The other thing we've noticed is the behavior gets worse after an increase in Keppra.  We have two more increases to go -- it will take us into the first week of October.  Then, a few days after an increase, like today he has one of the best days...his teacher's note from today made me smile from ear to ear.  He enjoyed himself, ate his entire lunch and wanted to participate in the learning activities.

So we continue to wait and see.  Hopefully once he's on a full dose of Keppra and weaned off Tegretol we can get some normalcy back into Jack's day.  We do see the neuro in October for a follow up and to get a weaning schedule for the Valproic Acid.  Wouldn't it be awesome if this kiddo could take just one seizure med instead of three?  Fingers crossed!

Oh, and I know -- wrong kiddo in the walker, lol!  I have yet to have Jack and the camera at the same time!!  The picture of Jack is from this morning waiting for the school bus!

PS -- DHL came to pick up the wrong walker on Friday.  I have yet to see a refund from spinlife.com and have not yet heard back via email when I asked the status this morning.  This is the last piece of the mess...I will keep you posted!

Edited to add -- I had an email from them -- my money will post in my account this week.  I'll be very relieved!

Sigh...

Jack's behavior. It's not good. His obsessions have returned full force and it's getting harder and harder to redirect him. It can be anything. I can tell it's going to be "one of those days" when he requests one of his obsessions before he even opens his eyes in the morning. Today it was the baby. This may sound harmless, or even sweet...but it's like there's a button that's pushed and we don't know where the off switch is.

Jack: Baby, up!
Mom: She's sleeping, she needs her rest.
Jack: Baby, GET HER!
Mom: Let's go eat.
Jack: BABY!!??!!!

and it can go on and on and on and on...I found the more I try to explain, the more he shuts down and repeats the request. It escalates until he runs away from me and finds something hard (like the floor) to hit his head. I've become very good a leaping over and placing my hand between his sweet little head and the object of banging.

If I do get him distracted enough to move from one area of obsession to something else, that too quickly goes down hill fast. If he's eating his bowl needs to be filled to a certain level at all times. If he can see the bottom, he freaks...and shreiks, and I gently remind him to use his words.

This is just a small example -- and if it doesn't make too much sense, it's because it's hard to explain. He's not being naughty or spoiled, it's truly related to the sparks and misfirings in his brain. Not seizures -- but it's like his thought process runs a million miles a minute and his communication only works a small bit, and we can't keep up.

I want to write more about this. I need to keep a diary of sorts, maybe to spot trends, maybe just to vent, maybe to have another mom or dad say they understand, they've been there too? I need to label these posts...and I also need to remember to post about the good days too.

He had 3 good days at school last week, then a seizure, then med changes...now his behavior is a mess. He's very emotional, obsessed, and not content to do anything more than a few minutes at a time.

To add to the stress-thick air at our house, poor Morgan is sick. She has a thick runny nose and has trouble eating and sleeping. She woke up last night while Jason and I were watching TV. We brought her out with us and she just cried and cried...poor kiddo. She wanted to get down to walk and when I put her down she went to take a step and fell flat on her face...no arms out, nothing to break her fall, just smack on her precious mouth. It made Jason cringe and bite his fist...I scooped her up for some mommy hugs, held her for a while and when I looked down at her we were both covered in blood! I tried to stay calm, but I felt weak in the knees. We rushed her to the bathroom and wiped her mouth as best as we could. We couldn't tell where she was bleeding from. After a few minutes the bleeding stopped and we were able to clean her up (all the while still screaming at the top of her lungs)...and we saw no harm came to her teeth or gums, it was her top lip that split. She settled down after a drink of water and we cuddled for over an hour until she fell asleep. It was just one of those things that happened so quickly that it seemed unreal. She's okay, just bruised a bit on her lip.

She's still sleeping now, and I plan on letting her sleep in no matter what harm comes to our bedtime schedule. She needs her rest.

Tomorrow the bus comes for Jack. I am anxious, but I know the school and bus company are prepared just in case Jack would have a seizure...hopefully Jack will have a good day at school, and have fun with his friends. He really seemed to love it last week.

I need a refill on my coffee now ; )

Also, sending prayers to those in the path of Gustav, stay safe, we are thinking of you.