What a crazy past few days!!
I was sick with a fever Monday, Tuesday and Wed. Today I feel better, but not 100%. Monday night was tough..let's just say that Bill redeemed himself.
Wed, Ryker had therapy. I expressed my concern that Ryker seems to be falling more behind. The OT agreed. She said that ECI probably won't give him more therapy due to lack of funding. So, I'm going to look at other options. I am a little hesitant due to money. Even though we do have insurance, it's still quite a bit out of pocket. Hopefully, we'll figure something out.
Wed night was SCARY!! I woke up around 3am with the wind howling. I thought it was a tornado. Fortunately, no it wasn't a tornado but a nasty storm. I was watching Channel 8's news with the weather guy, and when there is circulation, they show them as little rotating circles. They had one of those rotating circles near us but I guess it fell apart. There were lots of those circles all over the radar map. I was VERY scared, and shaking. Thank goodness the kids all slept through it. I decided that it would probably be good to have a tornado drill, just to figure out who will get who and where to go.
Today the kids had an NF clinic appt. The waiting was horrible!! The appt was at 10:3am and we didn't get in a room til 12!! I was by myself with all 3..yeah..not fun. Mom was able to see us since she works close to the hospital. It was nice having an extra set of hands. Note to self: INSIST that Bill takes the day off next time.
Anyway, here's the lowdown:Kalynn:
Her MRI scans are stable!! No growth!!! I expressed my concerns about her speech, and her writing. There is an education lady and she said she will call the school to see what we can do for her. Otherwise, she looks great!!Ryker:
His MRI's are stable as well. Apparently, he does have an enlargement of his optic nerve but not big enough to call it an optic glioma, which is great! I expressed my concern about Ryker's delays. The Dr said she would write a script for more therapy. I need to call and find out the information and then I'll call her to get a script..Ronin:
He has been discharged!! I have no concerns about him, he has no freckling, he doesn't have multiple CAL's. But if I ever have concerns about him, she'd look at him since he'd be there anyway with the other kiddos.
So, even though the wait was horrendous, the clinic itself was great. The people are fantastic. The Dr apologized for the wait, which was nice!
As I was walking out, this lady held the door open for us. I thanked her and she said 'You got one too many!' and laughed. Uhh..yeah.. Really funny lady. So that was another annoying twin comment for the day.
Anyway, I better go and cook some dinner.