Just copying my latest fb posts about what went on this week!
Wednesday April 18:
got some AWESOME news this morning...I actually had tears in my eyes looking at it! Reviewed Caitlin's newest xray at the chiropractor this morning...she went from a 35 degree curve down to a 29 degree curve! It is AMAZING the difference. I will put a pic soon. 3 years ago it was at 28 degrees, so they have really turned back the clock for her. This also means that we can stop worrying about a possible spinal fusion surgery....that is HUGE!!!
The picture below:
The one on the left is the older, 35 degrees. Xray on rt is the newer...29 degrees! The new xray is fuzzy as she was a bit slumpy standing that day....a bit of motion as you can see her head is dipped down. I was holding her rt arm and left hip in both xrays. She is standing up with her orthotics on but you can still see how screwed up (literally) her hip is. I am just thankful to Gateway Chiropractic that they got her back straightened out! He said they could likely get it down to 27-28 degrees. Even better! Worth all the time I spend driving her there for sure!!! :)
Thursday April 19:
not looking forward to keeping Caitlin up late tonight for tomorrow's EEG. That girl likes her sleep...usually sleeps from 7pm to 6am...even later on the weekends when we let her sleep until she wakes up naturally (usually around 8am- so 13hrs sleep!!). Her EEG is at 2pm so I will also have to get her up early (which is easy as we have early chiro appt at 7am) but keeping her awake for the 2hr drive to Milwaukee is going to be a challenge. I am planning on charging up the portable dvd player and hoping a movie will keep her awake on the way there...wish I didn't have to sleep deprive her....
kept Caitlin up until 9:30...figured it would be easier for me to keep her up late vs getting up early. (I am not a morning person) Gonna shoot for 5am for a wakeup...we have to be out the door for her chiro appt by 6:30am so that will work good. Boy was she mad....kept asking for me to do her bath every 10 minutes. She was quite ornery (in the psycho-type way she acts when meds are not working) as I tucked her in too. Not good! Gonna charge up the dvd player and work on a new playlist for my ipod for the boring drive down to Milwaukee.
Friday April 20:
rain rain stay away, going to drive to Milwaukee today. Caitlin is having an EEG this afternoon, wish us luck! Hope she stays awake on the way as she is required to sleep during the test. I kept her up 2.5hrs late last night and got up an hr early today. She kept trying to sleep on the way to school....
(in response to a friend asking how it went)
great! (well, don't know results yet! :) Just got home, turned on Dora for a bit while I take a quick break before bathtime. Brian took Brandon out scouting for turkeys so I am stuck on bath duty, lol! Caitlin fell asleep when she was supposed to for the test so all was well. Hopefully I won't have to wait too long to hear what it showed. She has a regular neuro appt in early May but I don't want to wait that long to know!
We had been seeing some weird stuff, hard to explain, not full on seizures, just so many 'off' things that we weren't sure what they were adding up to. This was mid March (the wheels of medicine turn so slow!! I know you know this! :) They did labs then but it took 2 wks for me to get results and they actually never got them, they load in her online record after 2 wks so I was able to see them then. Her depakote was way higher than typical so we adjusted that down from 250mg to 125mg for her morning dose. That was 2 wks ago and she did improve a little bit after that so who knows...I wish they gave instant results from EEGs! Been a month of waiting for answers now! We also had increased her topamax beginning of march so a lot of med changes going on. It worked out well to get the EEG now as we had her regular neuro checkup scheduled in may so they will have lots of info to make decisions then. At least the shunt is still working good! (knocking on wood!!!)
Caitlin getting the wires glued on..she hates this process!
she was really putting up a fight though you can't tell here...I took a picture to show C what the lady was doing, but after she saw, she really tried harder to fight her off! Another lady had to come in and hold her head while I held her hands. After they put the wrap on, she is fine, but this process gets her all worked up. I wish they could use a washable marker vs that grease pencil. I am sure that hurts her sensitive scalp. That is always what starts her off on a bad note.
dang that was one heck of a detour! We ALWAYS stop at the Culver's in Jackson on the way home from Milwaukee...kept seeing detour hwy 60 signs on the way, not knowing that was the road I take to the Culver's there! We had to drive on this remote winding country road to go around and get there. Would never have found my way if it had not been daytime yet! Good thing I could see the water tower I knew was nearby Culver's so I knew when to head back toward the hwy. At least I will know my way now when we go again next week! LOL!
Wow I am wordy I guess! :) Good night all!