These posts are related to both our Cerebral Palsy (CP) and Selective Dorsal Rhizotomy (SDR) journeys.
Evelyn was back to therapy this morning after having the weekend off. Today she had Jessica who was the first therapist she saw here. Evie was a bit upset at the start of therapy but then Jessica had her involved right away as she got to help pick the activities for the session. Jessica opened up a cupboard and on either side of the doors there were pictures of activities Evelyn could pick from (fine motor vs. gross motor). They…
Our first weekend out of the hospital was a pretty quiet one. Turns out sleeping with big casts on your legs isn’t the easiest as Evie has had two restless nights. We also think she is having nightmares but doesn’t seem to be in pain. Today we managed to get her to have a little cat nap. On St. Patrick’s Day we wore green and hung around the hotel for the most part. We were able to pick up some…
It was another first today for Evie…serial casting! This morning she got a cast put on each of her legs. The casts are to give each heel cord/ankle a nice long stretch. They are hoping this will increase her range 10 to 15 degrees on each foot. The extra range will help her with her gait pattern and alignment. She will need to wear the casts for about a week. The casts are made of fiberglass, plaster and there is…
It was a beautiful day in St. Louis! The sun was out and it reached to 15 above 0 (Celsius)! Definitely the nicest day we have had so far so of course we had to take advantage of it! This morning our whole gang walked to the hospital for Evelyn’s physio session. The walk from our hotel to the hospital is about 15-20 minutes (20 minutes for me, Brian can do it in less). We have been taking a more…
It has officially been one week since Evie had SDR surgery! How the time has flown! It honestly feels a like a dream that it has happened already. We were anticipating it for so long. Now every day we look forward to seeing her get stronger and re-develop her skills. What a journey it will continue to be! Evie had more of a restless night but no spasms. This morning the sun was shining so we decided to check out…
The whole family slept in this morning. We clearly needed a few extra Zs. Evelyn slept for almost 12 hours straight and woke up maybe once in the night. So glad she got some rest! The morning consisted of making crafts and watching Paw Patrol. After lunch we headed to the hospital for physio. It was the busiest we have seen the place since we have been here. We met Rebecca who will be our therapist for many of our…
It was another big day for Evie…she was discharged from the hospital! After three days of bed rest and five nights in the hospital, Evelyn was free to leave. Of course we will still be visiting the hospital practically daily for therapy and follow-ups but still, it was exciting! The day started out with another visit from a member of Dr. Park’s team. He let us know that Evelyn’s bandage will need to remain on until Day 8 and was…
We know Evelyn is feeling more like herself when she is the little chatterbox we know and love. Last night Brian said she talked a mile a minute and hardly slept as she kept telling stories. Evie loves telling stories, can be pretty expressive and has a big imagination. The staff at the hospital got to see our Evie today and a few commented on how much better she was today compared to yesterday. The first event of the day…
Today was our dreaded Day 3. This is the day many children (and parents) have a hard time as it is the first day their child leaves their bed. The epidural is removed, sensations are felt and pain and anxiety are high (but managed). Our Day 3 started early with Evie’s catheter being removed and a suppository. The Neuro team expressed how important it is for a bowel movement to happen as if it doesn’t there would be additional pressure on…
Today was a much better day! Evie and Brian both got a decent sleep last night at the hospital. We gave Evie valium last night. Her muscles spasms seemed to be under control but we wanted her to get a good rest as it has been hard for her to settle. Other than one time to reposition her, she was calm and slept. We also asked to move to the other part of our room as our baby roomie got…