ACTH - Week Six..........

yahooooooo!

6 more shots to go!

Well, today we did the final wean. We are at .06 ml per shots. We are in the finally week and I can't wait for it to get over with. We are doing really well. He is still a little cranky, and the sleep isn't the greatest. We have an early riser, and neither Lonnie nor I are morning people! HA HA

Daniel had his Echo Cardiogram today to make sure that his heart wasn't enlarged from the ACTH. And the doctor that reviewed his test said everything looked good. So keep your fingers crossed that the seizures stay away, that his heart stays the right way, and that he gets his normal bubbly happy personality back. I do miss the days when he didn't cry.

This coming weekend, Alexandra's labor pains permitting, we will be going to the pumpkin patch to pick a pumpkin. We'll have to post pictures of our exciting adventure to seeing the Great Pumpkin!

Wordless Wednesday

Week 5 - ACTH........We're Doing the Count Down!

Well again today being Tuesday, we did another lowering of the dose. We are now on .125 ml of ACTH. My poor little guys legs look like pin cushions...holes all over with little tiny bruises.

Only 13 more shots!!!!

I would do the happy dance again but our legs are still exhausted from our happy dancing earlier in the week!

Daniel was due to have an echo cardiogram (required after 4 weeks of ACTH) this week, but because of unforeseen circumstances out of our control, it has gotten rescheduled until next Tuesday. So hopefully that comes out well, with the only evidence being that Daniel does have a heart, and yes it is beating correctly. We do not want to see an enlarged heart!

The Chloral Hydrate that we got prescribed for Daniel has worked wonders, there is such a change in him. And to think that all that time he was cranky, all he wanted to do was sleep and couldn't. Poor Baby.

I am so happy we are almost done with the ACTH but then on the other hand, I am nervous that once we are off it that the seizures will come back. Hopefully I am wrong!

We are still waiting for Alexandra to have her baby. 11 Days until the actual due date and counting.

Need to do the Happy Birthdays for this month as there is a lot so we'll just list them here. Seems that October is a busy month for my family.

So here goes

Oct. 2 - Uncle James

Oct. 4 - Uncle John

Oct. 8 - Cousin John Paul

Oct. 8 - Cousin Dawn - she's 30!

Oct. 9 - Aunt Aimee

Oct. 13 - Cousin Adam

Oct. 16 - Cousin Tracy

Oct. 20 - Uncle Mike

Oct. 31 - Cousin Katie

and somewhere in there hopefully is Nephew Zachary!

(Isn't that a hoot, Daniel will be an Uncle at 2 yrs old!)

We are still doing the happy dance.......

Can you still hear our feet tapping? I am still saying to myself and out loud to anyone that will listen.

Hey Daniel had his EEG and there are no hypes. Of course most people have no clue what I'm talking about and just say "oh that's nice". But I still do my little jig of joy!

Well for two nights, count with me....One...Two...Daniel has been taking his new medicine and he has slept through the night! YIPEE!!! Another dance of joy! There is nothing like a good nights sleep to make your out look so much better. Daniel's therapy sessions in the past two days have been 110% better, there are no tears, they are not perfect but they are definitely so much more better than a hour of crying constantly.

Daniel started "school" today (Early Intervention). Here he is standing outside (YEP...STANDING UNSUPPORTED) waiting for me to walk him to school. He's not too sure if he's happy about it or not, but as soon as we got there and he got use to the faces from last year he was OK with the situation. Ms. Amy (Speech) was there (she is going to have a baby in a few months!) Ms. Terri (OT), Ms. Valerie (PT) and Ms. Donna (Social Worker) were all there. They even had a few new toys/buttons & switches this year. It will be a good year I think. Ms. Amy even asked to come to one of Daniel's Augmentative Speech Therapy sessions. He got to play in water today, we attempted to wash apples in the water but he'd have nothing to do with apples floating in his water bucket......he'd much rather have cups! All in all, it was a good session and we are looking forward to next Friday! Look for more photos to come in the near future.

By the way........have I mentioned? We are SEIZURE-FREE, NO HYPS, NO SEIZURE ACTIVITY.

tee hee hee hee hee

Doing the Happy Dance!!

We just got back from our 30 minute EEG and visit with Dr. Chugani. After being depressed and saying this ACTH sucks! Well it does SUCK, but it works.
For the first time in Daniel's life, I am very proud to say...

THERE ARE NO SPIKES

THERE IS NO HYPSARRHYTHMIA

THERE ARE NO SEIZURES OF ANY KIND

thank you thank you thank you thank you thank you thank you thank you thank you

Dr. Chugani also prescribed some Chloral Hydrate to help Daniel sleep only while he is on ACTH.

He said that he is probably cranky and not wanting to do anything BECAUSE he is so tired. So hopefully after a few good nights sleep he will be more active and be back to his old self.

His labs came back a little off but he said nothing to worry about. His glucose was 122 but again nothing to worry about. The past few days I have been worrying that Daniel isn't peeing as much as I think he should. So I was all ready to ask Dr. Chugani about it, but before we went to the appointment his pediatrician called to tell me his electrolytes were low and he was looking dehydrated............(reason why he wasn't peeing!) and he is probably dehydrated because he went from drink a few bottles a day to hardly any because all he wanted to do was eat eat eat. He went from eating a 1/2 jar of the small jars of baby food to eating three or more. So I wasn't thinking about bottles.........so stupid me. So we have to make sure he is getting at least 24 oz. of fluid a day.

Oh Yeah..........

Top it off........the icing on the cake you might say

I BROKE MY CAMERA!!!!

Yep. Did it, slipped right out of my hand while I was balancing Daniel on one hip, his bottle, shoes, blanket, bobath sticks, and walker in the other. Just slipped right outta my hand.

I won't repeat the words that came out of my mouth, but I put truckers to shame, and I will have to go to church twice as much to ask for forgiveness!

Told you I wasn't good at balancing! Anyone see any good sales on digital cameras........let me know.

This Weaning Process SUCKS! - Beginning Week 4 ACTH

ARG!!!! I can't wait for this part of the journey to be over with.
This ACTH certainly did the job for getting rid of the seizures but for the love of Pete, can we stop with the frickin' side effects?!!

Constant whining. Not a full out cry, but a "make this stuff stop mommy" cry.
He doesn't sleep, he doesn't laugh, he doesn't want to do his most favorite things, this medicine is robbing Daniel from us. He has lost his personality, he is cranky (and for those of you who personally know Daniel) he is NEVER cranky, he loves to laugh, and he loves doing his most favorite things, he even loves therapy. Not any more. We have seizure control, but we lost Daniel somewhere along the line.

We can get him to fall asleep in the car.....take him out and he wakes up. So we have resorted to switching and one of us sleeps in the car with him. Can I tell you how UNCOMFORTABLE that is?! We are so exhausted that Daniel's therapy sessions are getting harder and harder to get through. This coming from a child who ENJOYS his therapy sessions with Ms. Carol, Ms. Linda, Ms. Anna & Ms. Pat. Its hit or miss, he'll cry for most of it and we'll have a productive 15 minutes or its just a constant hour of the whine/cry.

I love my baby boy (he's not really a baby anymore) and I just want him happy and healthy. Where did that baby go? and why do we keep doing this to him?!!?

Tomorrow we go for an EEG (the first since starting ACTH) to see if the hypsarrhythmia (abnormal, chaotic brain wave patterns), activity is gone. Wish us luck, because I am again for the millionth time since this disgnosis started, losing controll and finding it hard to see light at the end of the tunnel. I just want some sense of "normalcy".

On top of all this..........my mom (Daniel's grandma) is sick and it makes me sad (please send prayers this way), my daughter is ready to have her baby any day now, my other daughter is away at school and I miss her, my other daughter is becoming a big girl and has purchased her first house, and then my baby girl in high school seems to be growing up without me having any say in anything....and I feel like I am missing out on so much of her life. I am not good at juggling and balancing. But I am very proud of all of them, and love them oh so much.

Just very overwhelmed with life right now. But then again.............who isn't right?