We then went on to clinic. They were all AMAZED at how Emma handles and maneuvers her zipzac. She was the star of clinic. Everyone just stood in the hallways in amazement of Emma. She is amazing in it though I tell ya what.
First we saw Dr. Vanderbrink. He reviewed her two studies with us. We learned that Emma's bladder isn't holding the capacity that it should for a child her age. When she was in the NICU her bladder was holding about 70 ml before it would start to leak. We had a Formal Urodynamics study done in Oct/Nov and at that point it was holding around 35 ml before it started to leak, and with the VCUG it only held 25 ml before it started leaking. BUMMER. So he put her on Ditropan. This medicine should make her bladder hold what it typically should. Dr. V isn't sure why it's holding significantly less. He said it could be indicative of a neuro issue and would consult with Dr. Stevenson or it could just be a bladder thing. Ditropan has some side effects that we've already seen but all in all it isn't so bad. Emma has to take it 3x a day. She gets a little flushed at some points and her mouth gets dry. So we just have to make sure she gets enough liquids during the day and were good. Another big change though, since her capacity is higher now with the ditropan she has to be cathed before Peter and I go to bed at night. Dr. V doesn't want her going more then 8 hours without being cathed. So she goes to bed between 7:30 and 8 and then will wake up between 11 and 12 to be cathed. I think this is the hardest adjustment for all of us to make. But like everything else. We'll adapt.
Then Dr. Oppenheimer came in looked her over and said she looks AWESOME. She said they are writing a new book on kids with SB and she wants Emma to be in it because she is a star. WAHOOOO!!!!! We all know she's a star! So that was really cool. We had asked about when Emma should have her eyes examined and Dr. O said to get an eye exam because she notices that Emma's eyes sometimes turn inwards. She said this could be nothing other then the fact that Emma has a wide bridged nose. But we have an eye appt scheduled in May just to make sure all is well.
Next up was Dr. Mcmahon. She too was so impressed with Emma and her zipzac. She even took a video to show her colleagues about independent mobility. Its so important that our kiddos get this independence when they are young. There is so much research that proves the benefits for cognitive, and social development it is amazing, our PT Nancy even says that research proves that power mobility is great for this development so we might get her in a power wheelchair sooner then later.
All in all clinic went great! We are waiting for our insurance to quit being dumb and approve her dynamic stander but in the meantime we were able to borrow one from Children's. They have a department called the Pearlman Center. It is a very intensive school like setting where the kids get PT, OT and Speech in one location 2 times a week, Emma isn't involved in it but. Nancy our PT set us up for a mobility eval there and we told the lady that we worked with about our qualms with her stander and they do long term loans! WAHOOOOO!!!!!! It is so precious to see Ems in her stander. She loves it, and yet again it gives her mobility and independence that she so craves and needs.
We had breakfast with the Easter Bunny a couple Saturdays ago. That didn't go over very well. She was participating in an egg hunt put on by our local Spina Bifida Coalition and she was getting an egg and the bunny came up to her and was touching her hand and she didn't realize who it was. She looked up and I'm sure we can all guess what happened next. She recovered from that quickly though.
We celebrated Easter! It was a very nice day. It was quite a difference from our Easter last year, and I am sooooo very grateful for that. We were able to dress our girl in her Easter dress and take her to church and celebrate with her not in an isolate at Childrens hospital.
Our zoo every year has a BEAUTIFUL display of tulips. If you know anything about me you know I love me some tulips. So we had to go see them while they are in their peak this week. It was beautiful and my little princess made it soooooooooooo much prettier!!!!
Thank you all for your love and support, I don't think we could dothis with out you all! Please continue to pray for Emma's health in general. She is doing so well right now and we just pray that it continues on this path!
Here are some pictures!
