So it seems like a lot has happened since our first trip to
San Francisco. As I wrote I let you know that we were waiting for our MEG scan
August 8th. Wouldn’t you know that we got a call LATE on the 6th
saying that our authorization was still in the ‘pending’ files of our
insurance. UGH! Are you kidding me? Do you realize I have been waiting on pins
and needles? Then there was the JOY of finding out that when I tried to cancel
the hotel we would be charged the FULL price even though we weren’t going down.
I was able to contact the owner, explain the situation and he graciously
refunded our money. THEN at 4pm on the 7th we got the call that we
were a go!!! Nothing like keeping a girl on the edge of her seat! SOOOO…we
loaded up and headed to San Francisco. We did our best to make the best of what
had been a couple of crazy days. We decided to rebook with our hotel The Inn on
Broadway again. We recommend them if you need a good centrally located place
downtown. Since daddy already works in SF we just met him there in fact it
worked perfect he got off work got to go to the hotel, do his reports and catch
a quick nap! We went to Pier 39 for dinner and kept Raegan awake as long as we
could, 11pm late night for her! Since she had to be sleep deprived we were up
early at 6 and out the door by 7. We were so blessed to have my sister, Aunt
Shannie, go with us. We enjoyed a wonderful early morning walk up and down the
hills so we could tire her out…
Let me just tell you it feels just a little ‘fish out of
water’ to try to meld into the hustle and bustle of the city. The noise, the
air, the cars, the people but as crowded busy as it is at the exact same time
there is just a calm of everyone you pass.
Part of this journey has also been new medications. Let me just say that
the second one we have added has added the challenges of behavior that we have
not had to experience with Raegan. So of course was in fine form. I LOVE
getting on an elevator to have her melt down or do the limp body drop as she whined
“I want to…. Or I don’t want to….” She was THAT kid. The one have a complete
fit. What was/is hard for me is that if I didn’t know that this was because of
her medication I would be all over her to behave but it was/is so hard to come
down on her when I know that this isn’t “her” and she can’t help it. So we
found our place to sign in however we were so early that we found a beautiful
garden to let her run.
So our time had come to go back upstairs and wait for them
to call her. She is SOOOOOO tired, whiney, crying I am just praying to God that
I can just have grace and patience and try not to care that it felt like every
eye was on me. So we go into a small waiting room, should be simple there is
one middle aged couple and one other lady. We sit down and I put Raegan on my
lap facing me, trying to distract her, asking her if she’d like to sing a song
and in a voice just loud enough for everyone she says:…
“CAN I TOUCH YOUR BOOBIES”?
Ok now that you have gathered yourself up off the floor from
laughing… I quickly and sternly said ”Raegan we don’t say that” although I was
not as loud as she was, so then she says:…
“CAN I TOUCH THE OTHER PEOPLE’S BOBBIES’?
At this point the couple who so politely stifled themselves
the first time could not help themselves and busted out laughing. I wanted to
DIE!!! Thank goodness they were all good sports, assured me it was ok and how “CUTE”
she was Oh Yeah “cute” was the word I was searching for…
So the sleep deprivation they were looking for happened and
worked. She had a seizure just as they called her name which I guess was “good”
since there was a good chance they would catch activity once they had her
hooked up. We met Susanne who was a middle aged woman who was VERY kind. Poor
Raegan literally fell asleep in my hands as I held her head for the EEG leads
to be placed. As I sat there I looked over at the “chamber” for lack of a
better word that our machine was in. Not very big at all, that wasn’t really
the issue though what was a bit alarming was that the door that they would
close behind us was NO JOKE what looked to be 18 inches thick…creepy…once all the
leads were on we laid her on the MEG scan bed and slid her head into the helmet
that had the 274 sensors. They had me lay with her on the bed to calm her
should she wake up and be frightened. The only other thing that was creep was
when they did close the door it had a round handle that locked the door in
place, like you would see on a bank safe. Then you lay realizing that this room
all the way around has walls about two feet thick and you were just locked in
by a bank safe door. Now the mind plays the “I’m in San Francisco” what if
there’s an earthquake mind games…luckily for me I was just as sleep deprived as
Raegan and fell asleep too. Almost two hours later they came in put some bubble
probes on her fingers to test some sensory sections then we were done!
I have to say I am finding out new things about myself with
each new chapter of this journey. Like this time I learned that I need SEVERAL
hours to “decompress”. I came out of that room, head spinning and just feeling
really overwhelmed. It just takes a a lot to process.
So where are we today? We have been doing two medicines and
on Monday started the second med at a level the Dr Sullivan felt we would see
seizure control. I was amazed as Monday night came and sure enough we had not
seen a single episode, then again on Tuesday and Wednesday. I keep a daily log
and a calendar in a binder and just this afternoon, Thursday, I happily journal
and noted that with today we had gone FOUR days without a seizure!!! I have now
decided that I will not out loud celebrate like that again since at dinner she
had a seizure. Again words will never describe the feeling you have when you
see “IT” when all you want is “IT” to be gone.
We will continue on but will ask for LOTS of prayers as the
next medicine that we are to try has very serious and scary side effects. I
know all meds do but this is our 3 yr old daughter. Blessings to all of you we
love and cherish you so much!
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