Rehab 4

January 21- Director of therapy comes by and is really nice and apologizes profusely for the mix up. She also addresses the speech thearpy issue. Apparently the speech therapist is telling her she is happy with her progress. I still don't understand how she told me on Saturday that she wasn't working with her because she wasn't making any progress, but whatever. She also suggests that the therapists try doing therapy with just Shayleigh. As I told her, I told them from day one if they thought I was hindering progress then I was more than happy to just observe from the window. That would not upset me at all. I am not here for me. I am here for my little girl and I want her to have the best chance she can at getting better!! Apparently, this is not most of the parents attitude/take on this issue. She said that she would talk to speech and get her take on how her and Shayleigh are getting along. She asked me to give the speech therapist a few extra days and then if we wanted to switch therapists we were more than welcome to. I was happy that she came to talk. And I was so glad Nick was here too! We go to OT who is first on the schedule and he starts off saying "I heard about this weekend. I am so sorry. She is making ridiculous progress." He also says he wants to try just him and Shayleigh. I am ok with that. She always does really well with OT. He is her favorite. He is really good with her and he will stop and give her love. lol. Last thing she does before coming back up to the room is kneel for about 30 seconds with no assistance at all. He has tried to do this the past couple of days, but she hasn't been to receptive. As soon as we see PT he apologizes profusely and you can tell he feels bad. He encourages me and tells me she is making good progress. I address the idea of water therapy and he says he will plan on trying that on Friday and that we will know for sure if we will do it by Wednesday. I am ok with that. One of the nurses had mentioned it a few nights before and I thought it might be a good idea. Towards the end of PT he puts her on the treadmill with her playdoh of course and she takes 9 steps by herself!! I am so excited! Shayleigh also does well with speech! She won't let her put the brush in her mouth, but she does respond and touch the ipad screen. All in all, today is a good day. Unfortunately daddy has to go back home, but he had an extra day with us so we are one day closer to his coming back!! Tomorrow is our second and last care meeting if we really do go home on the 31. I am going to try to get some answers about why we would go home if she is making progress. I really don't want her going home with a feeding tube! With her only getting therapy 2-3 times a week I'm afraid progression will really slow down!! We are also changing her feeding tube from ND to NG in preparation for discharge home. Tomorrow is going to be a long and busy day. And I have a feeling a very emotional day.

January 22- Shayleigh wakes up very fussy. She isn't real receptive to any therapy. PT didn't even try to put her on the treadmill because she was so fussy. Speech therapy tries to give her a sucker, but she throws it on the floor. She falls asleep for the 30 minutes between speech and OT so she won't even work for OT. She only wants to snuggle and be held. (I'm pretty sure OT didn't mind that at all- lol) We have our 2nd care meeting. The team continues to believe she will be ready to be discharged on January 31. I tell them I am worried about her going down to therapy 3 days a week. I tell them I am more than ready to go home and that I would be more than happy to go home if she could get therapy 5 times a day. They tell me they will try. They believe that she is making progress, but that her progress will be even better if she goes home to her normal environment. Plus, they feel like I have such great family support I will be ok. And also since she does so well with us ..that she will continue to improve. I don't realy know what to think at this point. At our first meeting I was told if she was making progress the discharge date would change. Now, they tell me she is making progress, but the discharge date remains the same. I am confused. And again, I don't want to stay up here, but I also don't want to go home with her like this. If they aren't pushing her here and we haven't made major progress I have a hard time believing that we will make more progress at home with therapy only 3 times a week. As opposed to 6 times a week here. I am still not crazy about going home with her NG tube. Not that I can't handle it or that I don't know what to do with it,but because they expect me to put it back in if it falls in. Personally, I don't believe that is a job I should do. If it were a long term situation, then yes definitely, but she won't need this tube forever. I am stressed, upset and frustrated. I kinda feel like our time here has been wasted if they are planning to send us home and she isn't eating, talking or walking. Nick and I thought for sure she would be doing at least one of those things...maybe we were expecting too much?!?! It is a tough day for Nick and I. Shayleigh enjoys having her Nonnie and her cousin Gracelyn come visit. As always we do some therapy in the room, we try the stander and she tolerates it well. After having 2 nights of restless sleep I decide to go ahead and give her 2.5 mg of Ambien to help her rest. I have tried not to use the Ambien because she wakes up groggy the next morning, but at this point I thought it might help her rest and let us have a better day.

January 23- Shayleigh wakes up at 0720. She whimpers and I jump in bed with her thinking it is the repeat of the last 2 nights where I have had to snuggle with her in order for her to rest. Oh, the terrible trials of mommy...snuggling with her baby. ;) She is wide awake and not acting like she is groggy or wants to go back to bed at all. I say "Good morning, beautiful. You slept really good! I love you!" and she gives me the sweetest smile. And continues to just smile. It was amazing! I get up and start getting her ready and she starts fussing a little and I think oh no. She starts the morning off with 2 sessions of pt at 0900 and 1030. Her first time to have any therapy more than once a day. Pt is very pleased with her. He is surprised at how strong she is (coulda told him that..you should see how stiff she gets for suppositories and enemas lol) and how she can do so much more than they thought (been trying to tell them this and trying to get them to push her a little more). She does everything he asks, but she cries the whole time and isn't real happy about it, which concerns pt and makes him worry about pushing her too hard. I tell him at this point she needs to be pushed! She can do it! Some of the wonderful side effects of cerebellar mutsim are apathy, lack of motivation, irritability and constipation. And of course, my sweet girl has all of those. Plus she IS red headed and stubborn (she gets that from Nick's side of course-lol). Pt comes up to talk to me at the same time that speech comes by to show mommy something. SHE ATE 3 OUNCES OF ICE CREAM!!!! Speech said she was grabbing at the spoon and using her hands and licking them and then whining because apparently she wasn't moving fast enough feeding her!! We were SOOOOOO excited!! During this time, Pt tells me we are going to try water therapy on Friday (which I had suggested Monday as a possibility) and that he wants me to watch and make sure he isn't pushing her too hard. I don't really know how I am supposed to know that. I just want her pushed. lol. She can do it!! Before leaving this afternoon the physical medicine dr came by to talk to us. She is the one who has seen cerebellar mutism. She is also super nice and she likes to play with Shayleigh. lol. She suggested that we might try a medicine to help her with her lack of motivation and to help her focus. She suggested Ritalin. I grew up on Ritalin. It is a good medicine if used as needed. She said that the life is only 5 hours and it works immediately and that she wants to try it for a day or 2 to see if it helps. At this point I am open to any ideas. I don't want her on it long term, but for a little while as needed I am ok with it. So, I am curious to see how tomorrow goes. She has pt,ot and speech back to back. I am a little nervous about them being all bunched up together because she does still tire out so easily, but we will see. All in all, today was so encouraging. I am beginning to see bits and pieces of my little girl coming back. She is happier, silly and all around more content. Which is what she was before December 21. I am still a little scared that this is too good to be true, BUT I also know that I have SO MANY prayer warriors praying that I can't help but know that everything will work out for the best. Plus, God has had his hand in so many areas of this whole situation. From finding the tumor, to providing a great neurosurgeon, to providing a rehab facility quickly, to allowing the pt student to be here Saturday, to providing AMAZING prayer warriors, and love and support groups. I don't know know that words will EVER really be enough to tell ya'll how much each and everyone of you mean to us! We have been overwhelmed with love, prayers, emotional & financial support from family,friends, friends of friends, and strangers! It is amazing!!