Wednesday, July 23, 2008
Monday Lily was worn out, cried the whole time on the horse and therapies seemed like a bust so it was a bummer. She was just so tired and I don't blame the poor little bug. She finally seems to be feeling better and out of her haze. She is home with her nurse and I am on my way there and since I got no phone calls, I am assuming the day went well.
School starts on Monday and tomorrow we meet the new teacher.... please let her be good. I doubt she can hold a candle to Mrs. Jean and Mrs. Amy, but I am praying she can and she will! Wish us luck!
I will post on Friday with an update!
Check out Flickr, lots of new pictures! I don't have a ton of Lily bug unfortunately, but there are some cute ones!
Tuesday, July 22, 2008
Here are some fun pictures!
Here is what Andrew did all day, he would go as fast as he could and spin Lily! She LOVED it and then Andrew did it for all her friends! (if you click on the picture you get a super sized version, the one with me and Andi is fun to enlarge b/c the look on her face really says how much she loves to ice skate! lol)
Here is Andi and me trying our best... Andi was not much of a fan!
And here are a couple shots of our stay in Utah.... this is the loaner chair we were using that Lily was way too big for!
And this is how Lily slept (if you remember I put her mattress in between the boxsprings of her bed and mine) btw: she didn't start with her head down, she just managed to get down there
And lastly my sweet girl at my cousins shower this past weekend. Lily had such a great time she ate 3 little tea sandwiches (egg salad) and a whole piece of cake and this was AFTER she ate lunch!!!! Cute thing! And she hasn't lost a tooth, that is how wide her space is of her front teeth.... let's hope the big ones come a little closer!! :)
Wednesday, July 16, 2008
Yesterday she had a good day. She had just one seizure and hardly any drops and her PT took her swimming for aqua therapy and Lily had the time of her life. PT said she was a different kid in the pool. Lily loves swimming! Especially in our bath water temp pool. No one else likes it that warm, but princess Lily finds it right to her liking.
So we are hoping things are evening out right now. One change at a time is the right thing to do.
Tuesday, July 15, 2008
It is all just a big mess right now and I don't want to take one away and add another and lower another. We just have to do this all one step at a time and my step right now is lowering the study drug. Which I didn't tell them, but they can kick rocks, that is what I am trying right now.
So I don't have much to update. Yesterday she had 4 grand mals and after one GM she had a cluster of myoclonic jerks that really upset her.
School starts next week. I have no idea who the new teacher is yet and frankly I am not even sure what day school even starts. You would think you would get something in the mail, or something. Oh well, I do have a computer and I guess these days that is all we need.
Bette Midler was incredible and I recommend her to anyone thinking of going! Absolutely wonderful!
Wednesday, July 9, 2008
Wish us luck or pray for us during this transition.
I am going to Vegas with my mom, sister, and aunt this weekend to see Bette Midler. I am so excited. Although it is a bad time to leave Lily, if I can't trust her with her dad, who can I trust.
I am pretty sure seeing Bette will completely take me out of my rut I have been in. It is so hard when you feel sick, feel exhausted and are constantly worried about your kiddos.
I think lying at the pool with a fruity drink (non-alcoholic, of course) and seeing Bette is exactly what I need right now.
Keep us in your thoughts and prayers please.
Tuesday, July 8, 2008
I'm pissed. I'm so freaking pissed. I am so not in the mood to "put it lightly". I am so pissed I went against my instincts and went ahead with this damn study. I'm pissed.
I thought Lily was going into status on the 4th. We were up north, I didn't have her Diastat, idiot I know, but her summer school keeps it locked up and didn't put it in her back pack before she left and I didn't realize it until it was too late. Anyway, no Diastat and she goes into a seizure that lasted, I don't know 8 minutes. Full convulsions, hard core seizure. Ruined her day. She ended up having a crappy day. Slept and cried. It sucked. Two seizures on Friday (that included the bad one), Saturday none (upped the Keppra, thought maybe that was the trick), but ended up with two on Sunday, and 4 (!) yes 4 yesterday. This morning she already started out with one at 7am. What kind of bull is this. I so badly want to just let loose on someone, anyone. I call the neuro office and the nurse in on vacation.... he has been on vaca for 2 weeks, finally is back, yet I can't leave a message with his "person". I will tomorrow, and maybe that is better. Maybe I will have time to cool off.
I am so angry because in November during a normal neuro apt. I said no GM's but lots of drops. So neuro says she needs to try this med it will stop her drops, but in order to try it she has to be in a study and in order to be in the study she has to GO OFF THE DRUG THAT HAS KEPT HER GM FREE. I am yelling because it is nucking futs that he would even suggest this. Even though my gut said no, I said yes. He made me think this was the cure all, end all. I actually believed him. I knew better. I let them separate her brain in order to stop these seizures and that did not work. I knew that if the GM's came back there is no guarantee that going back on Vigabitrin would stop them again this time. We may be back in that black hole we were living in for those three years of uncontrolled seizures.
Lily is regressing, she never wants to walk anymore. She rarely sits for longer than 10 minutes anymore (when she was up to 30 min) and she sleeps half the day now to shake off the seizures. Exactly back where we were three years ago. Life was dark. Worrying was constant. And then we were finally enjoying life. We were happy. I was able to comfortably send Lily to school without having panic attacks of her having seizures all day long. I knew it wasn't guaranteed, nothing is, but I can't shake this feeling of how upset I am that I didn't go with my gut. I'm sick of Dr.'s telling me what is best for my child, sure you went to school for some odd years, but you know what I have been Lily's mom for almost 6 years. I know my child. I am so angry. So angry with them, the study people, the Dr. and myself. The Dr. and the study are only out for themselves, for this damn study, and myself for not trusting my gut. I have a gut for a reason and not using it is like blindly following. I'm done. I'm sick and boy am I ever pissed.
The thing is, it isn't like ok pull her off the study and go back to what she was on, that won't work. We have to start from scratch and see what works and how. And every change is done one at a time so who knows how long this will take and I am just sick over this. Just sick.
I'll update when I talk to the Dr.
Wednesday, July 2, 2008
I told study RN I put her on Vigabitrin. She said they need to see her ASAP. Lily's neuro is out of town so we saw his partner on Monday. He is a real nice guy, I remember he was on call when Lily had her video EEG last summer and he remembered us. He said we need to take her off the V for the study sake. I said only because she is doing worse I will do that. This past weekend Lily was throwing these fits of rage and screaming for reasons we had no clue about. She was miserable and I saw that V was not the answer like I (dr. mom) thought. So I told the Dr. I am willing to try something different. He thought Keppra would be the safest bet. We tried this years ago, I am certain it will not help, but who knows. It has been well over three years since trying different meds, she might react different this time. Only negative side effect of Keppra is it can cause behavior issues. I asked for an example and he said "Well a totally normal kid tried to kill his family with a knife". "Ok then" I said "What is an example of a kid like Lily having a behavioral issue?" and he said "Crying, you'll know". Phew.... although if Lily gets up out of her chair and walks over to me, even if it is to kill me, I will be a happy person.
So we had to wean the V which was easy she was only on it a week. We added the Keppra today and she is still on Topamax and the study drug. I am not a fan of three drugs and if the Keppra shows any improvement I am ready to show Topamax the door. She has been on that one FOREVER and it has never done much for her so it is time to hit the road. Of course we can't make too many changes at once, so that is in the future.
So as of right now we are having a rough patch. Lily is upset. Seizures are a mess and I am as confused as ever. I wish I never told the Dr. she had drop seizures, none of this would have ever happened. The drops are easy to deal with. Much easier than all this bull. Sigh.
Good news is we are getting out of dodge. Ugh! It is so hot and nasty here. We are going up to my parents place in Greer, AZ. We aren't staying at the house in the link, that is my dads rental property. We are staying with my parents in their house. The rental has a steep stair case that we can't do with Lily. But that is to show what a getaway it is. We love Greer! Oh and the little girl in pink is Andi roasting a marshmallow!
We wish you all a very happy and safe 4th. Send us some good vibes and prayers Lily only gets better from here.
Oh and one more thing.... Lily and Andi are going to be big sisters! We are having one more baby! Our due date is Feb. 8th, 2009! Can you believe it! Wow!
Lily was granted a Make A Wish some time last year. I can't tell you what we had for dinner last night so don't judge. I recently th...
Ever leave your room to take folded clothes to your daughters room, walk into that room and see that your son "fed" the guinea pig...
This was one of my most favorite jokes to tell as a kid. What did one tonsil say to the other tonsil? Hurry the Dr. is taking us out tonight...
Today is the one year anniversary of the scariest day/weeks of our lives. On this day, April 7th, last year Lily had her spinal fusion surge...
Lily suffers from CDKL5 disorder. No new news to all our friends and family, but it is June and this was our first time acknowledging June a...