Wednesday, September 24, 2008

Quick update

So this wean has been a little tough. She had 4 seizures on Sat and on Sunday. She went down to 2 every day since Monday, but the bad part is she is refusing to eat. We think her 6 year molars could be coming in, but no one is brave enough to feel back there.
We stop study drug Friday. I know I said that I would do this slower, but the fact that she is not eating means I am barely getting half her meds in her anyway. I can't start Vigabitrine/Sabril until I have her off the study drug, so I am ready to start that and see if we can't just get back to where we were before all this sh!t started.
So I will update and let you all know. Lily had fall break for 2.5 freaking weeks this coming Monday so I will be home with her a lot. It is a good time to make the med changes. It is just hard when you do work.
Keep us in your prayers, please.

Friday, September 19, 2008


So we are going to wean study drug and then start Vig AFTER she is off study drug. Pray we don't go status. Sigh. This is a little frightening. He said it will be interesting to see if the study drug actually caused her GM's. Funny since I asked him at EVERY appointment if that is even possible and they pretty much laughed and said no. OMG if that is true I will be a very pissed lady. Not that it matters, what is done is done, but really I have been asking that very question from the start, because she was well off Vig for months and it wasn't until we went off placebo and went on the real deal that the GM's started. Anyway, we are in the weaning process right now. Dr. wants me to cut in half for a week then stop. Ha. I will do this in more like 2 weeks. Maybe 3. I realize he is in the hospital every day, but I really don't like to be there with my daughter as a patient.
So that is the plan. I will of course keep you all updated. I really appreciate all the comments and support you all give us. It means so much to have a little girl that is so very loved.

So let me give you all a Friday funny and post a video of little sis Andi Jane yesterday. We go to an outdoor mall here in AZ that has a water place for the kids to play in. Thursdays are Andi and my day to play. We spend so many days taking Lily to all her appointments I keep Thursday just for us. She is wearing her leotard from gymnastics and there was no music playing, but she just started dancing away and I had to record it. It is poor quality since it is from my phone, but you get the gist of what a crazy child we have! We wouldn't have her any other way!

Wednesday, September 17, 2008

Change is hard

Changes are in the air. Is it because it has been awhile in the waiting? No that can't be it. Is it fall? Who knows.
I still haven't gotten a plan for Lily's wean and add of the Vigibitrine so I put a call in the AM and it was much cheerier than my last, lets hope we will have a plan come tonight. She has had one a day since Monday, and I think ok maybe we can just deal with the one a day, but then I see the seizure and it is big. It is hard. It is intense. I see Lily's three year old sister holding her hand and telling her it is ok and that she loves her and I get mad. That is not how life is supposed to be! And even if it is one a day, it is one too many. I see how wiped out my baby girl is and it is not fair.
This morning our stupid puppy ran out and just went crazy, I couldn't get her back in, then when the bus pulled up I had to run and bring Lily out and while I am chasing the puppy, Lily goes into a seizure right there in the driveway. I forget the puppy and talk to her, Andi rubs her and when it is finally over she is spacey and tired and I have to put her on a school bus. It just breaks my heart. Then I can't get the dog to come to me and I just start crying. I know I am pregnant and I even cry watching The Hills, but it was too much. I swear if I had a pound near by I would have taken that dog, dropped her off and never looked back. I had never been so frustrated and overwhelmed.
I know Lily just slept the ride to school and she will be fine once she is there, but I can't, she can't, we can't have her go thru this anymore. I am so done.

Back to my point of changes. A few weeks ago I did some calling around looking to change from Lily's center based therapies (I take her to OT and ST) to in home therapy. I have been taking Lily to 4 therapies all outside of the house on Mondays and I am getting bigger and soon I will have an infant along with Lily and Andi and I just won't be able to keep up. Well God must have thought that was a good idea as well and opened the doors to not only an OT but a Speech Therapist that are able to come to our home, on the day I already have Lily out of school! Some people are on waiting lists for years! I did not think this would have happened so easily and I know this has God written all over it. But because these openings are open they start next week, so I had to let go of our OT and ST whom we all love and have been seeing for over 2 years. I had to call each of them today and apologize for this quick change. I know each kid they see puts food on their tables and I don't take that lightly. I wanted them to have a good heads up to be able to find someone to fill Lily's spot, but for my sake I had to take an opportunity that I know rarely happens. So anyway, I am sad to let them go. I am happy to have just made my life so much more simple. It is change. Change is scary. Change brings butterflies. Change, well is just that, it changes everything. But change can be good. This change is good.
Please keep us all in your prayers as we make this transition and as we make some med changes, I am praying that my gut is not wrong.

And maybe that someone steals our dog and gives her a good home.

Tuesday, September 16, 2008

And I finally did it!

After Lily having two to three grand mals this weekend (each day) after we upped her meds so much that she can barely stay awake. I called her neuro Monday AM and had to leave a message, Andrew said it was mean, but I didn't think so.
I got a call back with an apology and a promise that we can be off this study.
We gave it 9 months! 9! She had no grand mals when we decided to start this thing. Now she is having them and often. I'm done. I said I want her back on Vigabitrine, I know he doesn't think it is a cure all, but considering all we went thru before we tried it and then when we put her on it although it took some tweaking, her grand mals stopped. So I have to try it again and try it for good. Get her back to a high dose and go from there. She will have to be weaned off the study drug that has helped with her drops, but like I have said a million times, I take drops over grand mals any day! I know Lily agrees with me on that. So we just have to get the go ahead as to how we start the wean and start adding Vigabitrine. I know we have to go slow and I know there are side effects to Vigabitrine, but I know that grand mals are the worst thing to deal with and I have to see that they are stopped. Enough is enough.

Friday, September 12, 2008

Strange kid.

Lily had a neuro apt. on Monday and we upped the study drug and Keppra b/c she had been having anywhere from 3 to 4 grand mals a day and I was so frustrated when I came in.
So far this combo is keeping her just having one a day, but it is totally unpredictable and when it comes it is hard and wipes her out. Her drops are all but gone, but she is really tired on this very similar to Klonopin drug. I hate her napping all day. She went to bed last night at 6:30pm. And that wasn't following a seizure. She is just wiped out. So let's see wiped out from meds or from seizures. Isn't life so fair. I know I was told life isn't fair at a young age, but this is a little ridiculous.
Tuesday night Lily came down with a fever and by Wednesday AM it was over 103! No symptoms, no pain except for the uncomfortableness from a fever. I had to work and her nurse couldn't come early so I had to take her to work with me. But by 1pm her fever was gone, after Motrin, and never came back. Strange child. She just wanted to make things complicated and make her mom worry.
Tomorrow we are going to a party that one of the therapy companies is throwing. It should be pretty fun. I like free fun for the kids. :)
Have a nice weekend!

Oh I totally forgot to share, we are for sure, most indeed having a boy! There was no hiding his pride and joy. We even got the enjoyment to watch him play with his "toy"!

Wednesday, September 3, 2008

Lily's Birthday Post ... finally

August 28th 2002

Welcome to the world Princess LilyAnna Blu! Only after 29 hours of labor your beautiful little self came into the world, pink and crying. We had no idea what you had in store for us.

Only a few weeks later we found ourselves back into the hospital doing test on my baby girl that I had only heard of on Medical shows

And that first year was more of the same

2 months
7 months
Even though your first few years we spent aggressively searching for a diagnosis and a way to tame your uncontainable seizures, we still had fun!

First birthday Lily had Keto Cake!

At 11 months you were diagnosed with Infantile Spasms and at 13 months we treated you with what I think was one of the worst things we had to do to you. We gave you shots every day of the steroid ACTH. This picture explains how you felt and how your mommy and daddy felt. Grumpy!

But we still did fun things and tried to make your quality of life the best we could!

Trips to San Diego!

And Daddy setting up your red riding wagon just for you, and of course cute clothes!

Your second birthday in our new house was fun!

Your second year was very eventful. You were a flower girl! That was fun.

But your uncontrollable seizures had us in a tailspin. We took you to a specialist in San Diego and he ran lots of tests on you.

And the most heartbreaking decision we ever had to make, and one mommy is still unsure was the best thing for you and something we wish had never had to happen. You had to have brain surgery on Jan. 31st 2005. (unfortunately unsuccessful)

I cry still thinking about all you have had to go thru in your little life.

After San Diego and the surgery Mommy and Daddy decided to lay low on or diagnosis search and to accept seizures as a part of your life.

On March 17th 2005 you became the best big sister ever!

Then you turned 3 a few months later and as a strange turn of events, we finally found a great medication combo that helped control your seizures. Although never seizure free, life got much easier.

Then preschool at the best preschool ever! The Foundation for Blind Children! The bus came to our house and picked you up!!

You had the best teacher for two years and made some really good friends there (as well as did Mommy!)

You finished your first school year showing off your skills!

Here you are on your 4th birthday

And Easter that year

Disney World was a blast!!

You graduated from FBC in May 2007 and that was a little sad for all of us.

You had another Video EEG after a couple years

You started Kindergarten before you were even 5!

Your 5th birthday was fun at Peter Piper Pizza!

In October 2007 we went to San Diego with family friends and had a great time! You rode this roller coaster 3 times and kept asking for more!

Gorgeous girl!

This past year you started Hippo therapy, kept up with all your other therapies (OT, Speech, PT and Music), finished Kindergarten, started 1st grade and just had a super fun birthday party at Grandma Nancy's with all your friends and family and you celebrated your actual birthday with cupcakes in your class.

Even though nothing has been easy for you, you still try. You still smile and you still warm my entire soul with your just being you. I love you more than I could ever say with simple words. You are my first born beautiful daughter who made me the woman who I am today and I will forever be indebted to you and if I could ever teach you an eight of what you have taught me I can die a happy woman.

I love you my LilyAnna Blu! You and I are one heck of a team!

Tuesday, September 2, 2008

"I don't need another sister"

I was going to post about how frustrated I was with Lily's awful seizure filled weekend, but then last night this happened and I'd rather share this.
Andi asked if Lily could lay in her bed with her. We were in a sticky situation, we are dying for Andi to want to "play" with Lily, but Andi's bed has no rails and Lily could roll right off it. We decided to make a safe place for Lily on the bed and told Andi that she has to yell for us for any reason. That she has to be in charge with Lily in her room. She said she would.
We lie them both down, they are sharing a pillow and watching cartoons. Andrew and I were checking in on them every 5-10 minutes and all was well. Then all of a sudden we hear "MOM!" "MOM!" so I go running into Andi's room and Andi says "she's having a seizure!". So we comfort Lily during it and I thank Andi for being such a responsible sister and she says to me "mom, I don't want another sister. I love my sister. I know she can't walk, but that is ok. I love her."
I can honestly tell you that my heart melted and ran all though my body. My eyes welled up and I said again "thank you Andi for being such a great sister." Now this child can fight with me at times and act like she is sent to this planet to drive me nuts, but knowing that her heart is like that, none of that other stuff matters. She is a responsible 3 year old that I know will be a compassionate and wonderful, not to mention strong willed, woman.
I love being my kids mom.

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