Monday morning we arrived at Seattle Children’s at 9am and not a second of the day was waisted!! Therapies started at 9:30 and did not end until 11:30! First with 30 minutes of PT, followed directly by 30 minutes of Speech and was finished off with an hour of OT! Colbey Raye was excited to have so much attention but was very tired already (she typically naps from 10am until noon). Finally able to rest Colbey Raye took a short nap, ate a quick lunch and was back at it for another hour of therapy! 30 minutes of PT followed by 30 minutes of speech, busy busy girl that very first day, but Colbey Raye has adjusted pretty well. Now she is on a schedule that better fits her home schedule. A typical day here consists of breakfast and meds, an hour and a half of therapy in the morning (sometime between 8:30 and 10:30) followed by a 2 hour nap and a quick lunch, another one and a half hours of therapy (between 1-3) followed by another nap! It a very busy day for Colbey Raye and by the end of it she’s very tired! She has adjusted well and is definitely back to stealing every single heart she comes in contact with! Blowing kisses to everyone and charming all with her adorable smiles!
Monday was a day of introductions, a little bit of getting to know Colbey Raye and her comfort levels. A day to find out what helps Colbey Raye tick and what could be used to best motivate and excite Colbey Raye all while getting her to work on and perfect her skills. She was tired from the moment we arrived but she still managed to work hard and show that she has amazing potential to improve here!
We were able to get Colbey Raye onto a better schedule that works well around her nap, so Tuesday was a bit better for her on the sleepy side of things. Although being in a “new” place again made for an early 6am wake up call, Colbey Raye still managed to keep up her stamina and participated very well in all her therapies Tuesday! We got a lot of good steps out of her, a lot of good weight bearing on her right side (elbow support) and she even drank a ton of juice through a straw! Bravo miss Raye, she did great! Napping was very difficult for her though and she only napped maybe an hour. On to the afternoon sessions, again Colbey Raye did very well, with one minor set back. This is a struggle for me to mention as I still do not know what my gut thinks about it all and I have still not been able to speak to our neurologist yet (he should be by soon) so I do not have to many answers. But on Tuesday during Speech Colbey Raye had an “episode” (I am calling them episodes until I know for sure they are, it’s hard to even type the word, seizures). Colbey Raye has been having these staring episodes for a while now, she will sort of blank out, stare of into space so to speak. I have always been able to “snap her out of them” with a loud clap or by saying her name loudly, but never by waving in her face. Her PT back home has witnessed one, but again we clapped and Colbey Raye came to and smiled, going back to her normal playing. But Tuesday it was different. Colbey Raye began to stare blankly ahead, Beth (her ST) said her name, I clapped, Beth touched her knee, nothing. Colbey Raye didn’t snap out like usual and continued to stare for a few more seconds. Beth was worried, I was concerned but still didn’t want to deem it a…… Seizure. Well, Beth told our nurse, the nurse told our rehab doctor, the doctor called neurology and now Colbey Raye is back on her full dose of Zonisamide waiting further instructions from doctor Owens. Long sigh…. And still waiting for more information and answers. Tuesday night was also a doozy, with the new med change there was a mix up in medication dosage and we ended up not getting Colbey Rayes meds until 9:45. The poor girl was exhausted!! So exhausted that she couldn’t even fall asleep and was up crying, tossing and turning until 10:45 😥. Finally asleep, I snuggled up, fell asleep and before I knew it I was awoken. Colbey Raye was up throwing up! She threw up 3 times between 1am and 2:30am. We were up until 3:30am waiting for some anti nausea medicine and back to bed we went.
Wednesday morning Colbey Raye woke up, acting her usual happy self and seemed just fine. A little tired still, but morning therapy went well, Colbey Raye had a very productive and good day! We decided to cut out the juice (she doesn’t drink it at home and we think that along with being over tired caused the vomiting) and Wednesday went well! Napped great, participated in therapy great! But again had another “episode” during ST and would not come out of it with claps or pinches.
Oh Thursday was very rough. Colbey Raye was over being here! She did not want to be in our room, she did not want to go to therapies, she didn’t even want to scoot around on her bottom 😔. She was tired, emotional and wanted noting to do with anything! She had another “episode” this time I was the only one with her, and I again could not get her out of it and she came out on her own, followed by crying 😢. All she wanted was a ba-ba, her stroller or her bed! We ended the day a little early, she took a good long nap! It still did not cut it. I went to me weekly meeting with all the doctors and therapist, while the nurses fought over who got to stay in our room with Colbey Raye and Beau 😋! We set a few more goals for Colbey Raye, and discussed discharge dates. We have been fighting insurance on this admittance, and we were told only a week of rehab would be permitted, but the doctors here have chosen to over ride insurance (not sure what is going to happen there) and they have given us a tentative discharge date. We will be staying until the 12th of February, possibly longer! All depending on if Colbey Raye continues to make such good progress. I’m being told not to think about the insurance side and that the staff here will take care of it. So, two more weeks at least for miss Raye here at Childrens. The afternoon of therapy was just as hard as the morning. Colbey Raye took another nap, and then sister came for a visit! Gama, uncles, aunt and Austyn Jayne came to visit and play! We had a great time visiting the playroom and although still tired Colbey Raye had fun 😊. The visit was over, sister and family left, daddy came and Colbey Raye took another nap! Followed by a little play time then off to bed, and she slept amazingly!
We started our morning off on the late side, Beauden and Colbey Raye slept in! It was great, and Colbey Raye participated wonderfully in therapy again! It was good to see her in such happier spirits after such a rough day yesterday. She must have needed a little break, and the lighter day yesterday and good sleep helped get her ready for another busy productive day today! So far today has gone good and both babies are napping now! Daddy brought Beau up his swing last night and this is the first time he has napped longer that 20 minutes! Thank goodness for that too 😋. I’m hopeful that the rest of the day will go just as well as the morning and excited to see what progress Colbey Raye can make today.
All in all I am feeling so hopeful for Colbey Raye! All her therapists here feel she is doing good, making good progress and all agree repetition is key for Colbey Raye! We touch her righty over and over, she’s begun to touch it more herself! We make her lean forward and make forward motions from her trunk and she’s started to do so on her own! Even going to her belly all by herself! We are working hard to have her put two worlds together, and she is trying so hard! We have gotten her to speak one word and sign another, so we are on the right track! We have the best group of nurses, and we are starting to feel at home here again. Settling in nicely and Colbey Raye and Beau have begun to room well together! It’s been a tough transition for both, Beauden has been very needy, wanting to eat constantly, has to be rocked to sleep and won’t let me put him down for more the 10 minutes at a time. But at least he is happy, smiley and content when being held! Full of hope! Full of joy! And feeling at peace with this stay. what a difference it is being at the hospital with a healthy, happy, mobile, girl verses the alternative. Thank you God for this amazing opportunity! And thank you all for the prayers and support! Although this is a happy stay, a helpful stay and a good stay it is still hard on our family and we do not like to be split apart. Prayers for a productive stay, and a positive rehabilitation!