Monday, June 13, 2011
1 Year MOM's Evaluation
I can't believe I forgot to post about this one. We all went up to Philadelphia May 15-18th to go to Children's Hospital of Philadelphia (CHOP) for Charlotte's one year evaluation for the MOM's Study. We drove up Sunday after Stake Conference and made it to the hotel about 5:30ish. It was a nice little drive. Only 3 hours. With a movie going the whole time it felt like nothing. The girls did great. Kathryn was really excited to sleep in a hotel room in a bed in the same room as mom and dad. When we came home she said we had to move our bed over so her bed would fit in our room.
We went to dinner that night and went to sleep early for a early arrival to CHOP. The first day was the Physical and Developmental Evaluation. And XRay of her head and spine. We met Jamie Koh the Nurse Coordinator for the study at CHOP and then had the two evals. We had to tape up Charlotte's spine so they wouldn't know what surgery she had. I think she did great. She had just started Crawling forward the week before that So I was glad to be able to show that off. Man she's come a long ways since then. now she's up on all fours crawling on hands and knee's and pulling herself up on her knee's. Today I've seen her try to move her leg up to stand. Anyway. I think she did great. She had to do some little tests thing like putting blocks in a cup or finding an item under a cup or putting her finger in holes and coloring. I haven't worked on coloring so that was not a strong point for her. We'll have to work on that soon.
anyway after that we got lunch at the hospital and went downtown to see the liberty bell and Independence Hall. We didn't get tickets in time for a tour of Independence hall but we got to see the side house where the Senate and House met. It was really neat for me. Matthew probably would have rather gone back to the hotel but I'm glad he walked around with me. I really wanted to go in the Mint but it was closed for tours. Just a bit to late for doing it all. I did get to try a Philly Cheese steak and I have to say I'm not impressed. The ones at Steak Escape at the mall back in AZ are way better!
The next day was a really early start so I just took Charlotte for her MRI and Matthew and Kathryn stayed at the hotel and chilled. I'm glad I had my Kindle with me so I could read at the hospital. Charlotte had to be sedated for the MRI. It was so sad seeing her get sleepy and then fall asleep completely. She did really good though. She was the best patient yet. One of the nurses said she wished that all her patients would be as good as Charlotte so her day would be easy. Even the IV was simple for them. Charlotte didn't even flinch. They must have used some good Numbing stuff on her little hand. They did have to put a brace over the IV because she kept pulling at it. That took most of the morning. I didn't get back until close to 3:00 and I made Matthew take Kathryn out so Charlotte and I could sleep some more. the Dr told us not to do much as Charlotte would still be a bit groggy. So we found a little place to eat the then went to bed.
The next day was Urology and renal/kidney ultrasound. The ultrasound was first and that was fast and easy. oh it was cold and rainy and we had to check out that day from the hotel. So anyway we did the ultrasound and then went to urology for urodynamics. We had to wait a bit for that and then Matthew went in with the dr for that one. I stayed with Kathryn in the waiting room until it was over and then they talked with both of us. Nothing really new there. He wants us to start giving her medicine 2 times a day spread out to 8 hours and then tape the catheter in at night so her bladder doesn't over work at night. He also mentioned a procedure that we could have done to 'reset' her sphincter and urethra so the work in sync and not opposite each other like they do now. I'll be asking about that at our next clinic day next week at DC children's.
The Neurosurgeon wanted to talk with us about something they found on her spine. Upper thoracic area. She as a cyst on her spine that he wanted us to know about but that we didn't need to worry. unless it starts causing her to deteriorate in her physical activity. But know we're wondering if it is stopping progression in walking, like would she have been standing more by now if it wasn't there and such like that. So we'll watch that and her shunt and hope for the best.
Over all it was a good visit for us. Every one was so nice and loved our girls. Kathryn wore her purple sparkly shoes and got comments every where she went. and at how blond the girls hair is. I don't think I go anywhere without a comment on that.
After all that we were done and were going to head home but decided to stop by the Zoo first. It was an awesome Zoo. Lots of fun animals, all close together, no big hills, and just fun. See for yourself in the pictures but the animals felt like they were right there to touch. The Lioness was HUGE. It poured on us while we were there so we got drenched but it was still fun!
I would love to go back and tour more of the down town history area but that will be far from now. We can go back to chop at 30 months but I think were ever we are I want to go to San Fran as that feels like 'home' for the Moms stuff.
Here's to another 18 months of growth to knock the socks off the doctors at UCSF !!!!