Friday, August 29, 2008

Happy 6th Birthday LilyAnna Blu!

Happy Birthday my sweet LilyAnna Blu! I love you!
August 28th 2002 my girl came into this world and 6 years later I just can't believe all we have gone through.
I love you more than you could ever imagine and rocking you to sleep in the rocking chair last night had to be my highlight of the month! We never get to do that sort of stuff anymore and I am so glad we did.
I promise to post next week with pictures and all, but I have no computer at home right now and can only update from work and crazy I know, but at work I am working. Sigh.
Happy Labor Day weekend, we are off to Greer to cool off a bit.
Promise more next week.

Tuesday, August 26, 2008

Feeling a little better

Yesterdays post was written after being woken up at 4:50am and unable to go back to sleep. Then followed by an AM fight with Andi and taking Lily to 3 therapies by 11am. Then 2 seizures within hours apart, I was a little upset. She ended up having 3 seizures total yesterday which is upsetting, but we all took a long nap and I went to my yoga class last night and I feel refreshed. Plus I got about 9 hours of sleep last night, so yeah, I'll take those reigns back.
Yes I have those days where I want to be told what to do and just follow, but that isn't how epilepsy works. It is numerous medications and a lot of gut reactions and interestingly enough a lot of parental advice goes into what the neuro decides. At least in our case and at times I want to walk in the office blindly and let them tell me what to do, but I know too much and unfortunately our neuro knows I know too much and he relies on me with every decision.
Maybe it is time to try keto again. Ugh. I don't know. I hate keto. I hate not feeding Lily what she loves, but I do remember she did do pretty good on it. Not perfect for sure. It was never a cure all for us, but it has been many years. I guess whatever we decide we better do it soon since I need to have this thing flowing smoothly before a new member boards this family plane.
I don't know. Send some prayers this way. Pray for wisdom for me and for Lily's neuro that we make the right decision regarding seizure control.
Have I mentioned I hate seizures? Not today at least, right?

Monday, August 25, 2008

Up, Down, Up, Down

Sigh... so Lily has had two seizures today and it is just a little before noon. These are the hard ones that wipe her out. She had one after horse therapy and then just a minute ago before lunch. We have to leave in 30 minutes to go to Music and I am afraid she will be so wiped out I won't be able to feed her before our long car trip to Phoenix. Ugh. She seems to do well for awhile and then bad. Well never well, well, but not two big seizures in a day.
I don't know if we should try those changes again, but I am so afraid after her reaction to the Depakote last time to try it again. I am sure as all hell Keppra does nothing, but I don't want to wean without a plan and I am not sure I want Depakote part of the plan. Another problem is her drops are increasing. But if I up the study drug too much she seems to have worse GM's.
Last night Andrew was going off about not liking these new seizures and wanting change and I said "then you talk to the Dr., I'm tired". I wasn't trying to be rude, I am just tired. I am tired of seeing my baby seize every day too. I am tired of trying new things to see it back fire. I am tired of feeling so much guilt for ever starting this study. I just want to hand the reigns over to him and silently bow out. I just feel I am out of options.
I'm tired.
Sorry for being a party pooper I am just bummed.

Wednesday, August 20, 2008

Scratch those changes

So two days into Depakote I got a phone call from Lily's school saying she was sick. Bad diarrhea and dry heaving. No high fever and Lily's nurse was pretty sure it was a reaction to the new drug. Knowing we were leaving and having Grandma in town I decided to stop changes. Put Topamax back up and discontinue Depakote. That was a good idea because apparently Lily did very well while we were gone with no big seizures. I guess her drops were a little worse so we tweaked a little with the Topamax and study drug and I think we are at a good place. She seems to be doing better than she has been in a long while. Yesterday was the second day this school year she didn't have a seizure at school. That is awesome! Fingers crossed it stays nice and mellow around our home.
Playa Del Carmen was beautiful! The wedding was gorgeous! I have pictures on my Flickr account if you all want to check them out!
I also uploaded new pictures of Lily at Horse Therapy. I just can't get over how big she looks like on the horse. She is so in her element on Ruby the pony.
Big girl is having her party on Saturday! I cannot believe I will have a 6 year old! When did that happen??????
Thanks for all your prayers and concerns for Lily. Please continue to pray that she stays stable and maybe we start learning some new stuff without the darn seizures messing everything up. Have I ever mentioned I hate seizures?
Just wondering.

Tuesday, August 12, 2008

Changes

After our trip up north and all those seizures Lily bug had, we went to the Dr. demanding change. So he gave us change, then she stopped having so many and I delayed the change.
We started to wean Topamax as we were told, yet a lot slower than I was told. Like usual. :)
So while we are weaning the Topamax I am noticing, not more seizures, but a little bit more intensity in the seizures, so we added the Depakote... slowly I might add....so while we wean the one we will slowly add the other. I will update on how all that goes. As of lately though she is much more herself than she has been. She has been incredibly verbal, that child can scream! Especially when she is happy, the silly turkey. She is doing great in therapy these past two weeks. Last week she cried when we took her off Ruby the Horse! She is in a transition from her old Music therapist to a new one, we will greatly miss Rebecca! She has seen Lily since before her 2nd birthday. She has been the hugest constant in Lily's life, therapist wise, and we will really miss her. But her new therapist has worked at the center for awhile and has even seen Lily when Rebecca has been out so it is a good transition and I feel it will be a smooth process.
If only we could just knock back a couple 10-20 degrees Mondays would be so much easier.
Grandma Cheryl (Andrew's Mom) is coming tomorrow for 10 days! And Grandma Betty (Gma Cheyl's mom) is coming on Thursday for 10 days! And Papa Steve will be joining us next Wed as well!
We originally got Gma Cheryl a ticket to watch the girls while we got to a wedding in Cancun, then she invited Gma Betty and then they decided to have Papa Steve come for Lily's birthday party so it will be a lot of fun here for the next couple weeks!
Lily is having a party next Saturday the 23rd! It will be a lot of fun! Her actual day is the 28th but we didn't want to throw it Labor Day weekend when all the Grandparents would be gone, so it is a little early and a little smaller than usual. I decided to cut the guest list in half. We always have so many people that it is a little overwhelming for everyone. Lily included. And we are doing it at Grandma Nancy's big house and renting a huge inflatable slip and slide, it will be a blast!
So since we are off to Cancun in two days I will have to update when we return.
Pray all is well while we are gone. Cancun is a long way from home.

Wednesday, August 6, 2008

IEP

So bright and early this morning I met with Lily's teacher, the counselor, her OT and ST for Lily's IEP. It went as well as to be expected. Everyone is so nice and although I hear horror stories, I have yet to run into any. A lot was copied over from last year and it is so obvious how involved her teacher last year was and how much she knew Lily. It was like I wrote the report. Her new teacher seems very loving and well skilled and I think it will be a good year. Even better if we can get these seizures back under control.
This past weekend we went to Pine, AZ. It is about a 2 hour drive from our home straight north. Andrew had a couple friends and their girlfriends join us and we did some fresh water swimming at Fossil Creek which was fabulous! The water was a little too chilly for princess Lily so she sat and watched, I got some gorgeous pictures of her (check out my Flickr)! Andrew's friends were so awesome in helping getting Lily down and up from where we camped. It was not an easy endeavor and I was gracious that they were so willing to include Lily. But although the weather was cooler and the air was so much cleaner, Lily still had 4 seizures that Saturday and 3 that Sunday. Could be the elevation? I am not sure. But then we came home and she was back to one a day, which we can handle since the study drug has about all but cured her drop seizures. But since we went to see neuro on the heels of that weekend I asked for change, but I guess unless I see her go out of control again, I might just delay the change. This is what he proposed:
1. Weaning Topamax, a joint decision, she has been on that since 18 months old! I don't think it has ever done much for her, but because it is safe we haven't messed with it. So we will wean that first. He says cut it in half for 10 days then stop. I am far more conservative than him and will take about a month in getting her off.
Study drug: Stay the same, a nice low dose that seems to be warding off the drops
Keppra: Lower just a bit, but keep her on
Dilantin: Add. Sigh... I will if needed, but ugh, a new drug....well new old, she tried that one when she was itty bitty and it worked then it stopped working.

And to keep in mind trying again the Ketogenic diet. It has been years since we tried it and I suppose I'd be willing to give it another shot if it meant getting her off so many meds. I don't know... It is a lot of work and Lily is so motivated by sweets, I would hate to take away her one true love in life. We will see. I am praying that the answer will be easy for us to make. No answers seem to be easy, but maybe just maybe this one will be.

So that is our update for now. Oh I had an u/s on Friday checking for down syndrome and all looked well and they didn't see any signs of DS. But the tech said she was 95% certain that I was carrying a boy. I won't believe it until our 20 week appointment, but I was looking online at how factual determining the sex this early with the u/s we had and it was about 90% right at 13 weeks. So maybe we will get to find out all about snails and puppy dog tails.

Friday, August 1, 2008

Back to School

Lily Bug went back to school on Monday and so far things are going really well. I like her teacher and all the aides are the same, that is very comforting! They all know Lily.
Unfortunately Lily has had a seizure every day at school, but Wednesday. Yesterday, Thursday, she had two before school, one at school and then one last night. 4! Sigh... we upped the Keppra again, that usually helps for a few days, but we can't keep upping that every few days. We go in on Tueday for our monthly appointment so we will discuss options.
Monday Lily has her full day of therapy, 7am horse, 9am OT, 9:45 ST, 1pm Music therapy so she will miss school.
This weekend we're going up north a bit for the day and one night. I'm really excited, it is so beautiful up there, were going to a town called Pine. We're gonna swim in fresh water, my favorite thing! Have a picnic and show the kids there are fun things to do outside in the summer, you just have to drive a bit out of the valley to drop the temps!
I had an ultra sound today, it was an in depth one to check for Down syndrome and the baby looked good, measured a couple days ahead and the tech was 95% certain it is a boy! I still am waiting for the 20 week u/s to make me believe it, but she showed us something popping up on the little guy and it sure looked like a pee pee. My next ultrasound will be in probably 6 weeks or so, I will update for sure about that!
Happy Weekend!

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