We are on day three of week three at Childrens for inpatient rehab. Last week was a good learning week for Colbey Raye, for me and for all the therapists working with Colbey. There were ups and downs but over all a very rewarding week, and Colbey Raye has learned a lot. From vomiting and diarrhea to taking steps and combining words it has been an eventful week to say the least. We were so happy to be granted an overnight pass and we went home to watch the Super Bowl with family and friends, Colbey Raye was happy to be back with dada, sister and to sleep in her bed! She played and enjoyed the short visit! After the sad Seahawks loss we loaded back up and Colbey Raye, Beauden and myself headed back to the hospital. Only 20 minutes on the road Colbey Raye began to vomit All… Over… Everything… Pulled over, cleaned up as best I could and back on the road just in time to hit traffic! We finally made it back to Childrens, just 40 minutes late is all 😋. The babies went right to sleep, I cleaned out the vomit covered van and finally made it into bed myself! A bit of a crazy night but we were so happy to have been able to spend some time at home I wouldn’t change it!
Monday started off with a bang again, therapy right away and it took Colbey Raye a little bit to get back into the busy morning but she managed well and by the afternoon sessions she was ready and happy (for the most part) to be back at the hard work! She took about 5 steps with her right foot without prompting! She needs our support to keep her up and balanced but we did not have to help her lift up her right foot! It was amazing and I even caught a step on video! I cannot figure out how to post the video here but you can find in on my Instagram @napswithphoebe. Along with her wonderful stepping progress she is also trying hard to expand her language skills. It is all a work in progress but she’s coming along!
Due to the few vomiting incidents, starring episodes, sleepiness and the growing fist to head gestures Colbey Raye had a haste MRI Monday night and the results came back normal! Thank you Lord for that! There is no signs of excess fluid building up so we can rule out Hydrocephalus as the cause. I also met with Colbey Raye’s neurologist Monday afternoon to discuss these episodes she has been having. He does not think they are seizures! But we cannot know for sure without further tests being done. So the plan for now is to keep track of the episodes while we are here in rehab as well as once we return home. If they continue to happen daily after our return home then a prolonged EEG will be ordered. I’m hopeful these are not seizures, and we haven’t seen any since Monday, but my concern is they began to fade away once her Zonisamide levels went back up. We will keep an eye there. Daddy came to stay again, and Colbey Raye was so happy to see him. She is a daddies girl and has been asking for him ever since 😊.
Therapy went pretty well in the morning, Colbey Raye was interactive and very busy for most of it. After the half hour of PT, followed by a half hour of OT Colbey Raye (She worked very hard in each session) she was less than thrilled to participate in speech. Hiding under the table has been her idea of escaping from tasks and toy hoping in hopes to distract us from the task at hand is another tactic she likes to try to use. Luckily for us we see right through her! And continue to push her even when she tries to outwit us. Her attention span is about a minute tops, and we are trying to lengthen that by making her finish tasks before moving on. It’s difficult to do! We ended speech a little early though, she was all about the snuggles and I think she has figured out that she has got these therapists wrapped around her little finger!! A long nap, a quick lunch and then a chat with the doctor. The doctor was trying to explain that due to our uncooperative insurance they are struggling to keep Colbey Raye here longer. I was told she’s been approved to stay until the 8th, and that depending upon the feedback from her therapists we may not be granted more time. I was sad to hear this as I felt like Colbey would benefit so much from a longer stay. Next back to therapy she went and again worked hard! Due to a fussy brother I left the gym and missed the last session, but again Colbey Raye was tired for her last half hour and PT was cut about 10 minutes short. It happens, and Colbey Raye has been so strong, tough and cooperative for a 21month old that a little slack can be a little reward for the work she has put in. So Shannon (PT) and I discussed Colbey Raye’s progress. Shannon feels like Colbey Raye has made HUGE improvements and would benefit from a longer stay. She plays a huge part in advocating for a longer stay for Colbey Raye, and assured me she is going to try hard to keep Colbey at least another week if not longer. In Shannon’s words “I’d like her to stay until she is walking, and I don’t want her to leave until she is more consistent in her new abilities.” Colbey Raye has made great strides, but my fear and Shannon’s as well, is that if Colbey Raye leaves rehab to soon she will slowly fall back and not keep these skills she’s progressed in. The fight for time continues!
An almost sleepless night for Mr. Beauden and myself has left us all a little exhausted today! But that didn’t keep Colbey Raye from showing off! She did so great this morning, was happy and cheerful with a lot of hard work and a good effort to stand on her own. She even stood at the table by herself for a little but and came back down to sit slowly. She explored using a walker a little, just touched and looked at it but was very interested. She did a good job staying on her belly (something she hates to do) and practice weight bearing with her right arm. And for speech Colbey Raye got to spend time with music, one of her most favorite things!! She loved the guitar and the music teacher kept her attention longer than anything else ever has! It was so fun to watch her dance, shake, play and sing. We all laughed a lot too 😊. This afternoon went well too and she even used the walker to pull herself to her knees a few time! I missed that too, a fussy bumpy is no fun! But I’ll take Shannon’s word that Colbey did it! It’s only a matter of time before she’s confident enough to try and pull to stand. She did take a few steps with the walker too, but Shannon and myself both had to assist her while she threw a tantrum and tried to sit with every step! A work in progress 😋. Still after the fits her therapist said “Colbey you are the best part of my work day.” She’s a sweet girl, yes she is! We are still waiting to hear from insurance, and are praying for a longer stay! She is so close to reaching a few goals, and I know she deserves more time to achieve them! All the therapists are rallying together to extend the stay as well as the doctors. We have such an amazing group of doctors, therapists and nurses here backing up Colbey Raye! And they all love this sweet girl already.