Friday, June 27, 2008

Back from SLC

So Lily and I headed to SLC on Sunday afternoon. We arrived at 7:30pm, got in a cab and got to the hospital after 8pm. We arrived hungry, but the cafeteria was closed. They did have a parent room and I found a yogurt, pudding and milk for Lily. I had a microwavable burrito and then we went to our room. It was pretty decent considering it was free. Two twin beds, a big handicapped bathroom, blinds that wouldn’t close and thank God a TV, with no remote, but there was a TV.
I knew Lily wouldn’t be able to sleep on a twin bed with no rails so I put her mattress in the middle of the bedspring of her bed and my bed; she slept really well and safe that way.
Monday we got up went to the cafeteria and ate. The staff there was very friendly; we ate well and headed over to wheelchair clinic. I met two very nice men, one in charge of wheelchairs and the other the PT. After over looking her chair they recommended that we kept her frame another year and we just “extreme makeover” it. They said if we go up in size it will be large and much heavier and will last her 5 years. I agreed that I like the weight of her frame while trying other chairs and agreed to fix up her chair. And by doing that we were able to leave by Wednesday instead of Friday.
So after a long and very throughout fitting we left Lily’s chair in their hands and borrowed a little Pixi chair far too small for her. The rest of the day was eating in the cafeteria, trying to go for a walk, but it was really hard since the hospital is on a steep hill. I knew I would never make it back up, so we went back to our room. They had a large play room, but there wasn’t much for Lily to do. I felt bad, but we spent a lot of time holed up in our room.
By late Tuesday afternoon we got her chair. It looked great. She actually looked small in it. Before she looked like the hulk in it. We have hopefully another year to go, unless she has a huge growth spurt, highly possible, but we should have another year to go in the chair. They really cleaned it up. It looks great.
We headed home Wednesday, the flight there went so smooth. I was nervous to travel alone with Lily, but everyone was so helpful, I had no problems. My luggage was there when we made it down to the baggage claim and it was just a smooth transaction. Unfortunately the way back wasn’t as smooth. I had helpful people and I was grateful, but the plane of late, baggage was late, etc. It was a crazier security situation in SLC and I was a little stressed, but we survived and her chair made it on and off the plane twice with no harm done. Andrew and Andi were waiting for us when we got off the plane that was fun!
Lily and I got a bad cold over there and we have been nursing our colds at home since. I don’t know where we got it, but with the 112 degrees outside and bad cold, life isn’t a blast.
Today Lily and I are home alone. Andi went to school, Andrew is at work and we are bumming. I am catching up on my blogging, laundry, and rest. It is nice. We may go into the pool a little later; it would probably do us some good to get outside.
So that was our trip.
Now about this study, I did something I wasn’t supposed to do, but you know what. I don’t care! I was wrong about thinking the increase was helping. She had about up to 3-4 grand mals (tonic/clonic) a day. She was having a seizure sleeping, waking and sleeping. Reminded me a whole lot of where we were before brain surgery and I AM NOT going down that road again. Lily needed to be back on Vigabitrine and I don’t give a flying F what anyone says about the study. Guess what; one day on Vigabitrine, the GM’s were gone. She needs that med. She should have never been taken off that med and I am mad we went that long screwing around with that other med. It made her seizures worse.
So I got a call today from the study RN. I was waiting until next week before calling her. I wasn’t in the mood to plead my case quite yet, but since she called, I spilled. She seemed a little frustrated, but I said sorry I am done watching her suffer, watch her regress in therapy and just done watching her seize when I knew she didn’t have to. I’m so glad we had a whole box of that left. Study RN said she’d look into some stuff and call me back. I don’t care; we fulfilled our agreement to this thing. The paperwork I signed says I can back out AT ANY TIME, so there. Done! If they can keep us with her taking Vigabitrine, fine, but I don’t care if they can’t. By the way, I wouldn’t have done that if I didn’t feel it was absolutely necessary. Her neuro said to up it twice and if that doesn’t work than we gave it a chance. He is now out of town now and I didn’t want to deal with one of his colleagues that don’t know Lily. I know what works and what doesn’t.
So I will let you know what happens from here. I feel like I completed my end of the bargain and Lily deserves more.
I have a tough day ahead tomorrow. I will help mourn my friends lost daughter. I am so sad for her loss and am not sure what to say. I just pray I can just be there and listen. It is just not fair. Send prayers to her for comfort.

Friday, June 20, 2008

Up, Up and Away

So we upped the study drug again, and so far so good. I don't want to jinx it, but maybe this is the right dose. It is a prety high dose, no wonder, but so far so good.
Lily and I leave on Sunday to head on to SLC. I will take a laptop with me so I will do my best to keep you all posted and keep me less bored, unless I have no access or something, we should be good.
I am a little nervous to fly by myself with Lily. It isn't easy to get her carseat in the plane while I have no where to put her in the meantime. She needs full support at all times. I will have to ask for assistance. I am also concerned with fitting her wheelchair in the cab. But we'll figure it out. I really wish I would have just decided to drive, but then again, I can't imagine that being very fun. That would be a long drive.
Can't wait to see her new wheels! It is so time for a new one!

Monday, June 16, 2008

Lily and this drug

I left a little message for the neuro this morning because I am getting totally annoyed. Yes the new med has almost all but cured her drop seizures, that is awesome, but she also is having a huge increase in grand mals. She is up to 3 a day and they last 30-60 seconds and then totally wipe her out for at least 30 minutes. I am so over all this. She was clear of grand mals when we started this study, we should have never taken her off of vigabitrine and I am so annoyed.
I am awaiting my phone call.

Lily had horse therapy at 7am today, Andi slept over at my sisters last night since Andrew is in S. Dakota fishing with his dad and brother an entire week, and even at 7am we were close to 100 degrees. It was hot and flies were everywhere. I think I am actually looking forward to our trip to Salt Lake for Shiners next week, even if we are going to be in something similar to a hospital room eating cafeteria food for an entire week I don't care. It has to be cooler there and getting a brand new wheelchair that Lily needs and not what the state thinks is appropriate cost wise, well I can't wait. Just me and Lily bug all week. Shriners paid for our airplane tickets, they said they will pay for the cab that takes us to the hospital, and Lily will be fed all week long on their dime. I can't believe how great this place it. I even got a phone number for a family who lives there that is willing to get us out and make us home made dinner. I have a feeling by Wednesday I will be antsy enough to call a stranger. The number was not from Shriners, they don't buy you friends as well, that was just a right place at the right time type of thing.
Lily had Horse, OT and Speech. Now we just have to go to Music therapy at 1pm and we will pick up Andi and head home for naps. Sigh... I'm tired! It's 112 degrees today. I know the cost of enjoying 9 months of the year, but I can still complain a little, right?

And all this is such nonsense when I share what I just found out. Yesterday on Father's Day my dear friend gave birth to a daughter who passed away after an hour on our earth. This is her second child she has lost, her son she lost during labor. They both had a very rare and even more rare to be genetic condition called Potter's Syndrome. There are no words for times like this. Even with all the trials we have endured with Lily, I have her. She is in my arms every day and that is what is important. I am grateful they had an hour with her, I know that was an answered prayer, but I just can't imagine the loss. The empty arms of someone so warm, so loving and so not deserving of empty arms. Please keep her, her husband and their family in your prayers, she is someone I have known my entire live and love deeply.

Wednesday, June 11, 2008

Andi Jane......

So last night I catch Andi putting a bag of Poor Brothers jalapeno chips into the freezer and I ask, "what are you doing?" and she replies "cooling them off, they are too hot!"

Tuesday, June 10, 2008

Summer School!

Lily started her first day at summer school back at the Foundation for Blind Children.
She is in the SHARP program which goes all day (8:30am-3pm) and it sounds like it will be a blast with swimming, bowling, Gymnastics, etc. I am happy she has something fun to do while out of school.
Andi is going to VBS all this week at our church. It runs all this week 9am-12pm and thank God for my best bud Kim who is able to take her for me, her son goes as well. Lily has no busing for this summer so I am a running mama!
Anyway, I want you all to cruise back over to Lily's site. There is the cutest song on there that we just got from this awesome company called Songs of Love they did this for Lily with just a few things they asked about her. We have listened to it at least 15 times already at our house. The girls can't get enough of it!

Friday, June 6, 2008

On to the NEW study

Same drug, new study. This study is called open label and the Dr. can rx what she needs. Well finally folks we are getting somewhere! Last week he rx'd her 5mg 2x a day and although there was a small improvement, it certainly wasn't sing songs of praise worthy. But this past Tuesday he put her on 10mg 2x a day and we are seeing some big improvements. Neuro really thinks this is the right drug for Lily and so far so good. Now him asking dating advice was a little off the subject and to be honest a little strange, but he is getting my kid a good drug, that IS HELPING, and we don't have to pay for it, hell he can come to my house, lie on my couch, cry his eyes out and I won't charge him a dime. I'll even try to find someone for him. Although he may never ask my advice again after I told him to go to church and he said he isn't a Christian and I just said, "So."

Anyway, Lily is doing well. She is still trying to get over a runny nose. I know it used to be norm for her, but we have gone MONTHS without it running then two weeks ago it started and it has yet to let up. Our dogs are shedding bad, that could be an issue.

And I am afraid to report that I did something drastic with Lil bug yesterday. Chopped off her gorgeous hair. I am just so over our fights, DAILY over brushing her darn hair. I mean it was so long and every day it would be a tangled mess. Here are the before and after... don't get mad, it will grow back, besides think of all the none fighting we will be doing now.









See she is still cute.




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