Tuesday, November 20, 2012

Changes

There is never enough hours in a day nor money in the account, right? It sure seems this way. But I know we are blessed. So blessed. 
I have so much I want to share and write about, but my time is short. 
We are almost done moving. A few things left in the old place we have to gather and then we will finally get to work on the new place. It's been crazy. So much to do. So little time. 
The place is incredible though. Bus gets Lily, we walk Andi to school. Lily's room has so much room! She gets bathed and dressed in there and there is still room for her chair and other equipment. Her door doesn't get dinged because the wide doors and hallways are bigger than her chair. There is so much room and the kids aren't all in one room playing when Lily is resting. This move was so needed, but it was hard to do. 
So many memories in one place. Heights marked on the walls, memories all over the place. It is always bittersweet to be out with the old and in with the new. 
It seems like we are venturing into a new season of life. Baby stage is gone with Oliver and Lily is now 10.
Andi Jane is going to be Mary in our church play on December 15th and had her lines memorized the day she got the script. She wants a laptop for Christmas. The baby days are gone and my heart aches a little bit for what will be no more, but excitement also for the new memories we will make in this new home.
Andi Jane so badly wanted to be Mary and I told her she had to ask Ms. Ashley (play director) and she said "I already asked God" ... well sure enough a few names go into a basket and out comes Andi Jane's name to be Mary. That night in bed after we read the script she said "you know I got to be Mary because I asked God" I said "yup" and she said "I like that God, he's a good guy". Oh she fills me.
Lily got a Make A Wish! They called and asked if we had our passports, I said no and they said get them because we are going on a Disney Family Cruise to the Bahamas this summer!!! This is beyond thrilling because it is something our family would never be able to manage and now we get to do this. Lily will LOVE this! Warm water, warm sun. Everything she enjoys! We are so excited and have got to get our passports!
I feel I should elaborate on the whole Lily got a Make A Wish..... I would have never even asked for a M*A*W in the past but as Lily has gotten older it seems our battles are bigger that we are fighting. The biggest issue, which has always been, is her seizures. Lily has the worst type of epilepsy a person can have and when you have seizures that are not controlled no matter what you do you are given the worst odds with sudden unexpected death in epilepsy. Not something we like to discuss, not something I even dwell on. But it is a fact. And that fact was enough to qualify Lily for a Make a Wish. And with the growing Lily is doing we figure a vacation like this needs to be done much sooner than later. So that is how Lily qualified for Make a Wish and this is why we have decided to even request it and are using this opportunity to get a family vacation while Lily is still light enough for Andrew and I to still carry her. 
Our last neuro appointment didn't go as I was expecting so we are thinking of taking Lily to the Rett Clinic in Denver, CO to see Doctors who see several other CDKL5 kids. I don't even know if anything will change, but it would be nice to see someone who knows other kids with CDKL5. It would be nice to make a 5 year plan with Lily because we are coming up to some changes in her life physically and we need to make some plans. The scoli appointment and then neuro threw me for a loop and I think we just need to see some doctors who don't just say well she has Rett syndrome there isn't much more we can do. Every note Lily has says Rett, no one here knows anything about CDKL5. 
Anyway... I am going to try to keep up better on updates, I am soon getting a computer and and desk in my room!!! Maybe then I will post so often you'll know what color toe nail polish I am wearing! Ha! Like I polish my toes.



No comments:

Popular Posts