Wednesday, April 30, 2008
She has nothing in her system, AED's included and now is pretty much just dry heaving. She just cries and cries afterwards and then passes out. It is the saddest thing. I just want to take it for myself so she doesn't have to be sick. She doesn't understand. It is so sad.
Pray this is over fast. She is having it from both ends and when a kid is in a diaper and doesn't understand to puke in a bucket, it gets a little gross, for a lack of a better word.
Pray for a restful night for her.
I just called to check and my mom said, she is sick. Lily is NEVER sick. I hate this.
I might take her tomorrow to the Dr. if she still is sick. I will update.
Tuesday, April 29, 2008
Friday, April 25, 2008
I'm used to waking up at 5:45am every morning. It is one of those perks to living in one of the only states refusing to spring ahead. By 5:30am the sun is so bright, unless I develop an addiction to crack and have to foil my windows, I will continue to be awake at 5:45am every morning, which honestly, I don't mind. What I do mind is the kids joining me.
I use this early morning time to drink coffee, watch the news, curl up under a blanket and have some me time before the day begins, but today was not one of those days.
Lily has woken up screaming the past two mornings in the early 5 o clock hour. It isn't something new, she goes through periods of this daily and then goes months sleeping peacefully. Yesterday though I was able to change her positioning, she gets herself uncomfortable and is unable to correct it, then I put her blanket back over her and she went back to sleep until 6:30am. Not this morning though. She was just screaming and screaming. I changed her position, I covered her, she was quiet. I sneak out, she cries again. I leave her be for a few seconds, realize this won't stop and bring her to the living room where she proceeds to cry and cry and cry. I give her a drink she drinks it, then cries and cries and cries. So then 10 before 6am in comes Andi crying her head off. She woke up way to early and in trying to comfort her Lily is just screaming. I put Andi on the couch with a blanket and milk and put on her show. Well apparently her show isn't her show today and the child flips! She flips out! She wants to watch things that aren't on. I tell her she can watch this or this and she wants something entirely different, not even on yet. She is screaming, I start screaming and Lily is crying. It was awful and I wish I would have handled it differently, but man, I was tired and so frustrated!
Anyway, Andi apologized. Lily just stopped crying, for no reason, just as her crying was for no reason, and I made my coffee and retreated to the computer for a little solitude. A little writing time.
Lily is off school today, but because I still have to work she will spend the day with her nurse. I'm sure they will have a nice day. Her nurse is so good to take her on daily walks and gets her outside, although it is already getting too hot.
Andi is going to school and I am going to work. We have a very busy weekend and I am tired thinking about it all.
Hope you all have a great weekend!
Monday, April 21, 2008
Anyway, due to the fact we are already harboring near 90 and we know we are about at the point of no return here in lovely AZ, so we changed her Hippo therapy from 11am to 7 AM (!). I'll admit it was tough this morning for the both of us. She cried most of my getting her ready and all through horse grooming, but once she got on Ruby she was happy and rode for 20 minutes without having to be corrected once! It was her best ride ever! I am reporting this, I was in my car, but PT said it was her best and that makes me happy.
The 7am really is going to save time and gas since the stable is out by us and the rest of therapies on Monday are not. We go straight from the stable to OT and Speech. And now we are at my office for a couple hours before Music in Phoenix. This is much better than what we were doing. I just need more coffee.
So that is about it. She is doing much better than Saturday and we see the Dr. next Tuesday about the study. He will hear it from me.
Saturday, April 19, 2008
I am in fear she is having the ultra rare Gelastic Seizures. I would love to think she is just having cute giggles, because they are cute. But it is more likely seizures than not.
Here is video of how she was yesterday. The giggles come from no where. I don't know if the other video of her giggling is a seizure or not, who knows. It is just so hard to know. I mean she was literally laughing and crying in a moments notice.
This is the giggly Lily
This is her just moments later. I didn't get the crying on video that came on shortly after, but this shows how she is unsure of her emotions, kind of dazed looking and then a rude Andi comes along and messes it up. Just sharing so you all understand what I am trying to say.
Friday, April 18, 2008
Earlier that day we, Andrew, Andi and I, joined Lily's class, as well as it seemed every class in the entire state of AZ, at the Arizona Science Museum. It would have been much more fun had it not been so packed, but I always love to visit Lily's class. I just love everyone in that class, the teacher, the aide, the kids. Lily was happy the entire time and it was fun to see her so happy and interactive.
After Lily's bath and the seizures, I lied her on the floor and went to get her lotion and diaper and jammies, the minute I lied her down she cried, so I ran. I came back into the room and Andrew is whispering in Lily's ear and she is almost asleep. She was incredibly relaxed and serene. I wonder what he as saying to her. So I massage her, dress her and pull her long, wet hair back, and put her in her bed. This time though, I played "I love you this much" for her on CD. She was so relaxed and out within 5 minutes. Sweet thing.
I don't know what it is about Lily, but no matter where she is sleeping, every time I see her sleeping I just want to jump into bed with her. She makes every bed look cuddly, soft and the best place in the world to lay down your head. I have a feeling it has nothing to do with the pink car bed with pink and purple bedding. I think it has a whole lot more to do with whom is in that bed.
Wednesday, April 16, 2008
Lily did well in OT and Speech. She did great in Hippo, but it is already getting too hot and we will have to move Hippo (Horse) from Monday at 11am to Mondays at 7 am (!). She did great in music therapy as well. After Music we had to go to the hospital for the study. Thank God though it was (finally) a quick one. Blood pressure, weight check and give them the old meds and journals and got new ones. Quick but still annoying.
Tuesday both girls had a dental apt. It was Andi's first and Lily's second cleaning. Lily did awesome, just like last time. We were complimented on her great teeth and I take 100% credit for that one. She did great and loved it. She loves that little suction thing. She is so cute. Everyone there loved her shoes and kept telling me how beautiful she is.
We go to the best dental office. It is for kids only and man are they good. I just wish everywhere we went Lily was treated like that.
Andi was adorable and of course had everyone laughing. She is quite the character. They said her teeth are all in and perfect. Her next appointment she will get a cleaning.
**I was just at lunch and left this post open to finish when I came back. While at lunch I got a phone call from Lily's teacher. Lily had a 5 minute grand mal. I'm pretty upset. A lot upset. I have yet to see that big of a seizure in quite sometime. I knew they were creeping up on us. Little 15-30 second ones, one to two times a day. But not a 5 minute one. Things have been going so great. So smooth. I am sick to my stomach that stopping Vigabitrine, getting on this study has been a horrible idea. A horrendous idea. I could be getting ahead of myself. I am not sure. I will see if this happens again, but I am just sick about this. **
Friday, April 11, 2008
This was me trying to shop at Ikea with Andi yesterday. She was mad that I took away a yellow dolly from her that she was using to tote around a little pink hippo.
Thursday, April 10, 2008
This is my reason for being pissed. Her Dr. really swayed us in the direction towards this study, swearing this med will help Lily. No mentions of a placebo option until we were already balls deep in paperwork and a commitment had been made. The Dr. is the head of the study so really this is for him. We could have easily gotten the drug from Canada as we got the Vigabitrine, and tried it and seen if it worked. But he said we would all be helping each other out if we did the study. The drug would be free, which honestly is a big draw, meds out of the country, not covered by insurance, obviously. And we would be getting a drug kids need FDA approved AND Lily would get better. But no one said, well if she gets the placebo, you are wasting your freaking time. And that is bull to me.
Now I am having to go to Phoenix every other Monday or Tuesday, Lily has to sit on a toilet for hours to get some pee out of her, it leaves her bum red and sore and me annoyed. She has to have her blood drawn every two weeks. She is off a med that helped her and now suffering from new seizures. It all seems wrong. I get placebo in adults, but freaking non verbal kids who are as I am told severely mentally retarded. Like Lily can pretend to not have a seizure or pretend to have one b/c her mind thinks she is on a med or not. Bull.
This is all bull and I am getting more pissed as time goes on. Time wasted.
Plus the contract I signed said we will be paid $35 a visit for our "time" more like for the ridiculous amount of gas I am wasting. But whatever. Monday will be our 9th visit with out one dollar to show for it.
I am calling bull and you better believe I will make my feelings known this coming Monday. You better believe it.
I love it when they say, is she better, same or worse. Worse biotch... this study sucks. And they look at me and say, tell me how you really feel.
Sigh.... just so annoying. I think we need to do a count down for this damn thing.
Tuesday, April 8, 2008
That's my girl!!! Check out the other names, she is the only girl!
*Click on image to enlarge*
I will always keep http://lilyannablu.com up and running, but I am moving her "continuously updated journal" to here. This is more blog friendly. Feel free to look at pictures over there, but come here for updates.
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