Well in good news, the sun came out today! It has been gray and gloomy here lately, and cold. Today is gorgeous out. Yay!
Our nurse just called in sick for the afternoon. Of course, Monkey has tennis practice, which means I have to take Peanut with me. Not fun, given that her attention span is about 2 minutes. LOL It'll be a looooong hour.
The neurologist appointment this morning was good. He said we can go up one more step on her Keppra dosage before we're maxed out, so we are trying that first. We have seen a huge reduction in the number of seizures per week, so it's better than before at least. If this upped dose of Keppra doesn't stop the seizures totally, we are going to add Topomax. He mentioned a slight risk of status epilipus on it (not sure of the spelling, or how much the risk is). I definately need to research the issue.
I just got off the phone with the surgeon's office, we have an appointment Tuesday afternoon. This is the consultation for the surgery to redo her g-tube. Hopefully they can schedule it ASAP so we can get it done and over with!
Off to change a diaper and feed a Peanut. :)
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
7 comments:
Glad you didn't have to add a third...yet. Keep us updated on the g-tube.
Thanks for letting me know about that pop up! Its been doing it to me but I didn't know it did it to my readers! I thought it was just my computer, because its been freaking out lately! I guess she did go private. I don't know why she wouldn't tell me. I deleted her blog so it would stop.
Hoping those seizures stop!
Keep us in the loop about the g-tube surgery!
Tammy and Parker
www.prayingforparker.com
www.5minutesforspecialeneds.com
Thanks for stopping by our blog and leaving such sweet comments. Your little Peanut is such a doll. I'm sorry for her struggle in this life, and yours. I look forward to the day when there is no more pain and strife, when all of our bodies are perfect. I can't imagine all that you deal with from day to day. You are a good mama! And Peanut is blessed to have you. Stay strong sweet friend.
Many blessings,
Christy
Yay for sun!
Boo for no nurse!
Yay that you can go up on her Keppra dosage.....praying this works!
Boo for more surgery! But, hoping you can get it done soon and it goes smoothly!
Hope you have a great day! Love and Hugs!!!
I hope everything goes smoothly with the g-tube. Sorry to hear about the nurse situation. I hope your adventure to tennis practice wasn't too crazy with Peanut:)
Some days just seem like there is always something... But I just admire the way you handle it all. Amazing.
And I so agree with the others... Yeah for sun!!
Post a Comment