January 15- I have officially been kicked out of the bed and my pillow has been swiped by a red headed monster! Shayleigh is super sleepy today. She doesn't want to do much of anything and it is slightly depressing for mommy. According to the physical medicine drs who use bromocriptine and have seen cerebellar mutism before bromocriptine is supposed to make the children wake up and become more active. Not really what I wanted to hear, but they don't seem to be too concerned with her sleepiness. They attribute it to catching up on rest since she hasn't had very restful sleep since surgery. Of course, I am still worried, but what else do Mom's do best besides worry?!?!
January 16- Shayleigh remains sleepy and is slightly irritable when she is awake. Again, I voiced my concerns to the physical medicine doctors, but they don't seem concerned. They think her sleep/wake cycle is off and that she is catching up from many nights of restless sleep. Shayleigh seems content in therapy, but doesn't really do anything new or exciting. Although content is much better than what we were dealing with!
January 17- After spending 2 days in a super funky mood, today I have finally decided not to be upset with all this sleeping and not to be discouraged. It is so hard to be here 24-7 and watch my baby struggle everyday. Especially for me. I am not a positive person. I am greatful for my Mom who is able to see the little progress she does do. If I were here all by myself it would not be good at all. We try a different stander today and Shayleigh does amazing tolerating it! She probably stands for a good 10 minutes and plays with her playdoh on the tray that comes in the front of her stander. PT asks me if I want to take it back to the room and work with her with it! Of course I said yes!! Shayeligh does well with OT. OT is really good at challenging her to do different things. I find out today from the speech therapist that speech is normally the last thing to come back after brain issues. Slightly discouraging news, but praying/hoping/believing it WILL come back!!
January 18- Shayleigh woke up fussy this morning. I am afraid she might be coming down with a cold, although how she got that I have NO idea. I always worry when she wakes up fussy that she will spend the entire day fussy and not do well with therapy. However, this was not the case for therapy today. PT decided to try to see if Shayleigh would be able to walk on treadmill. He didn't put her in a harness, but instead kinda held her up. She was able to take a few steps by herself with both of her feet! I was SOOOOO excited! They were even able to move up how fast the treadmill was going!! took a few steps by herself with both feet. By the afternoon Shayleigh is not fussy and acts like she feels absolutely fine. The pedi sends neuropsych by for a visit and for me to ask more questions. Although, I am asking the same ones to physical medicine and they are able to answer them all. Neuropsych doesn't normally see kids until they are 3 and up and really I have no idea why the pedi sent her by, but we asked her the same questions we asked Physical Medicine. Neuropsych tells us that they normally see the quickest and most progression in the first 3 months after surgery with progression slacking off and ultimately winding down 2 years after surgery. I speak to her about my concern with Shayleighs regression in speech. She isn't making noises like she was and she won't let me brush her teeth again. She says that we will give it a few days and see how things progress. She says she will stop by next week and we can talk and go from there. Daddy comes back into town for the weekend and sends mommy to Ronald McDonald house for her full nights rest.
January 19- Shayleigh has therapy at 0900 this morning so I make sure that we are back to the hospital by 0830 to help Daddy get her ready. We arrive and she is already dressed and ready. (good job daddy!!) We get in our wheelchair and wait for our first therapy which is OT. Our normal therapists are off on weekends so we normally have prn people or other therapists who work with her. Unfortunately 0900 comes and goes. They are normally about 5-10 minutes later than the time they give me anyway, so I don't think anything about it. We just stroll Shayleigh down the hallway to keep her busy while we wait. 0915 rolls around. They are never this late. I ask the nurse what the deal is. She calls and says "they don't have her on the schedule for today. They say she isn't making any progress so they are going to give her a day off." First of all, what?!?!?!? If she isn't making any progress we should be pushing her harder NOT giving her days off! Plus, she walked on the treadmill the day before!! And pt & ot have both told me she is making good progress. I am beside myself. I start crying. Speech comes by and it is our normal therapist who told me the day before "I will see yall tomorrow." And when I said "I thought you didn't work weekends." She says "I am tomorrow for Shayleigh." Anyway, I ask her and she says she isn't making any progress in speech and apparently not at all so she needs a day off. I am so upset. Of course, about this time we receive our first visitors from home. I decide to run down to the gym to get Shayleighs stander that we had accidentally left down there the day before. I am so upset when I get down there, but of course just by "chance" (God, again?!) the student that has been working with her for PT is there making up a few sick days from the week before. I stalk her and wait by the window. When she comes around I ask her about the no progress business. She is just as flabergasted as I am and says she is making progress and we are very pleased. She then tells me that she thinks scheduling was messed up. Really all I cared about hearing was that she was making progress. Even though, they have been telling me she has, when they all the sudden "take it back" I just needed a little encouragement again. The nurse sends a message to the director of therapy who apologizes profusely and says she is sorry for the mix up. I am still upset that someone, somewhere mentioned that she is making no progress. I am also upset that speech decided she needed a day off. She is here for the sole purpose of rehab and I don't think that she should take any extra days off! Not making progress is a reason NOT to take a day off! I am anxious to talk to her regular PT & OT and I am also hoping the director of therapy makes an appearance and has an explanation. We do our own version of PT & OT minus the treadmill.
January 20- Shayleigh enjoys playing with her cousin Victoria. They play with rocks and playdoh. We do our own PT & OT with her. Plus, with all the excitement from visitors we figure she is probably worn out! Nick finds out before he is about to leave to go home that his boss is giving him Monday off. Shayleigh and I are excited that Daddy will be here an extra day! And I am especially excited since I am anxious about how Monday will turn out. We also talk to the dr and the nurse supervisor about a new speech therapist. We are worried that she is giving up on our girl and we can't have that!!
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