Well minus Violet screaming just about the whole day our appointments went very well.
I am not really sure what Dr. Dietz had to say since Vi was seriously screaming at the top of her lungs, not even sure how we got a good judge on her ticker since she kept growling and holding her breath. But I trust her and we don’t have to go back to Cardio for a while.
Dr Meilahn will be having Violet fitted for leg braces and we are looking into those strollers still since Vi is getting too big for her infant carrier. Not sure if we will get a “wheelchair” or just a better more fitted stroller. As I predicted OT got added on for the arm brace. We’ll see what Patty can come up with.
EEG looked good and Dr. Campbell actually got us in 2.5 hours early so that was exciting. We are going to look into some different sleeping positioners for her because she is really starting to outgrow that Rock & Play. We’ll continue to leave her Seizure meds where they are at for now & when she is 3 start looking at tapering them down, slowly.
Dr Jaglan wants to see her back when she is 2 and look at possibly doing surgery to release the bicep muscle on her right arm since she is so strong / tight. Talked about potentially having to travel to see a special hand / arm deformity doctor. He said he knows of a few in the states but they are not local. We’ll see what kind of insurance hoops we’ll have to go through for that.
Dr Thomalla and I agreed that with the increase in fluids we are going to try to take her off her antibiotics for her UTI’s. We’ll check a urine on her in a couple weeks and see if anything happens and do a repeat US in 3 months.
WOW! For the long day we had & that is all the report I have for you….what a shame.
Violet & I are both super glad to be back home. She hasn’t complained once since she has been rolling around on the floor. I even caught her pushing herself up with her left arm! Way to go!!!
Other news: DON’T FORGET ABOUT THE AMAZING BENEFIT SOME OUTSTANDING MOMS HAVE PUT TOGETHER — IT’S THIS SUNDAY – – JUNE 30TH, AT THE MERRYLAND BALLROOM IN ROSHOLT. KIDS GAMES, PRIZES, FOOD, LIVE MUSIC, RAFFLES, SILENT AUCTION JUST TO NAME A FEW OF THE WONDERFUL THINGS THESE LADIES HAVE PLANNED!!!
Then the following weekend IS AN AMAZING DAY OF GOLF, RAFFLES, SILENT AUCTION AND AMAZING FOOD! BEAUTIFULLY DECORATED DINING ARRANGMENTS! PUTTING CONTEST, AMAZING HOLE IN ONE OPPORTUNITIES — A MUST BE AT EVENT! NOT A GOLFER??? THAT’S OKAY! JOIN US FOR DINNER & RAFFLES!
CAN’T MAKE EITHER EVENT BUT FEEL LEAD TO SUPPORT VIOLET IN SOME WAY? SEE THE NEW DONATIONS PAGE FOR MONETARY GIFTS
Thanks for your support…this is a journey none of us ever intend but I can speak for my family and even through the bad times —we wouldn’t ever change our precious gift!
lots of love,