These posts are related to both our Cerebral Palsy (CP) and Selective Dorsal Rhizotomy (SDR) journeys.
The weather network said sun today so when we woke up this morning we ran to the window and saw that Mr. Golden Sun was out! Woo! Isn’t it true how the sun puts people in a better mood? We knew we had to spend some time outside! After we got dressed we took Evie down for breakfast at the buffet at our hotel. She enjoyed having some special Mommy and Daddy time in the booth. She rocked her eye…
Surprise! It was raining today…again. Even the local folks are saying this is a lot of rain for St. Louis. Tomorrow is supposed to be sunny so fingers crossed it is so we can check out more of this city before heading home. Before therapy Evelyn worked on the activity Brian’s co-workers sent. She did an excellent job painting the egg cartons and her and Oma created three cute little critters. Ev’s interest in crafts has really grown since being…
It was a two appointment day for Evie. This morning we had an appointment with an ophthalmologist here at the St. Louis Children’s Hospital named Dr. Tychsen. Another CP mom suggested I look into seeing him while down here as he has a lot of experience when it comes to eyes and children with CP and is familiar with Dr. Park. Evelyn had strabismus surgery in Dec. 2015 and though her eyes improved (no longer crossing) her right eye still…
Another rainy day in St. Louis! There was actually a flood warning as it has rained so much. This morning Brian and I took Wes on his own adventure to the City Museum. Evelyn was more than happy to stay back at the hotel with Oma and Opa. We didn’t want to take her as Dr. Park does not recommend the City Museum post-SDR and I can see why (stay tuned). Wesley has been cooped up more than normal lately…
Happy Monday! Evie slept in this morning till almost 7:30 am, which almost never happens. She woke up in a great mood and completed her exercise program without any complaints. This morning she had therapy with Jessica and Oma came along. The therapy room set up has changed as they continue to do renovations and we got to see the brand new floor on the side that they were working on. Very nice and slip resistant! It was busy in…
It was another cold and wet weekend in St. Louis so we stuck to indoor activities. Now that Evie has her new orthodics a shoe hunt began! We checked out two indoor malls and the two outlet malls in the area and today we finally had some luck. Shoe shopping is not the easiest when you have orthodics to consider. You need more space in the toes, in the width of the shoe and in the height too. New Balance…
Evelyn had a great sleep last night since she was free of her casts! You could tell her mood was much better, especially since her independence is returning. Once she had her “Super Shoes” on she was walking around from room to room and chasing Wes. It was so nice to see her happier! We got to the hospital with some time to spare so Evie walked the halls. When Brian tried to give her a hand she said “I…
Physiotherapy was at 9:00 am so we all had to move a bit faster this morning. After a brisk walk to the hospital we ran into another SDR family in the therapy waiting room who we have chatted with a few times. It was nice to catch up on how they were doing. Evelyn worked really hard this morning. She started on the treadmill again but this time she walked backwards for six minutes. Next she worked with a giant…
Can’t believe it has been two weeks since Evie had SDR! Time is really flying by but also not very fast at the same time. I guess it depends on what we are doing. Two weeks from today we will be back home sleeping in our own beds. Looking forward to that but still looking forward to many things here in St. Louis we want to check out and of course seeing Evie progress with her “new legs.” The glue…
It was another grey and cool day so we decided to do an indoor activity this morning. We headed back to the Saint Louis Science Centre. We signed up for a family membership when we first arrived in town and we have been using it! Today we took Oma and Opa and decided to check out the planetarium which is included in our membership. We watched a really cute video about a young star (the sun) who is trying to…