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.