Rehab

January 4 - It takes me until 0200 this morning to finish getting things ready for our transfer to Our Children's House at Baylor. I lay down for a few hours, but have to get up around 0600 to get things ready for Balentine to come pick us up. We give Shayleigh some Ativan to help her rest for the ambulace ride. We end up with 2 great girls transferring us! They let Nick ride with us in the front seat. Our entourage follows us (we have 3 cars). And we go in style in the new Mercedes. Shayleigh starts off on the stretcher by herself with me sitting on the side by her, but right before we stop for bathroom breaks, sugar checks, and breakfast (for me) she gets a little fussy. I end up on the stretcher with her for the remaining 1 1/2 hour ride. We both doze off. We get here and it is surreal. I don't really know how else to explain it. We get to our room and meet our nurse (who is fabulous). Our room is directly across from the nurses station which is good and bad. All the doctors come in and they are fabulous! They listen to us and act like they have nothing better to do than be with us. It makes us feel really good about choosing this facility. Pt & Ot make an appearance & work with her a little & nutrition also comes by. It is overwhelming in a good way. Tons of people in and out most the day. We get our schedule for therapy for Saturday. Sunday is the only day of rest therapy wise. It is a busy day, but a good day. Shayleigh spends most of her day sleeping. We feel very confident in our team and our decision with this facility. At the end of the day, Nick has to leave because only one parent can stay the night. I cry. Give me a break, I'm pregnant! lol

January 5- Shayleigh spends her first night in a crib by herself since surgery. I have been scrunching up at the end of the bed because she has all the lines and wires & I didn't want her to pull anything out. So, when she moved mommy was all over it rearranging lines and wires. Needless to say, I haven't had much rest between her moving around and people coming in and out. But, I don't care. Her first night here and her first night by herself and what does she do??! She pulls her TPT tube out. lol. So we have to worry about getting that back in before her next dose of medication later this afternoon. The doctors come around again and we ask a few more questions. Shayleigh is quietly alert. She goes down for her Pt and OT and does relatively well. I tell PT that we are having trouble with her wanting to lay on her back for diaper changes. She normally sleeps curled up on her left side and wants to do that ALL the time. The PT gives us a wedge to help us with positioning. After we get back to the room with the wedge and try to change her diaper she has no problem rolling onto her back. We don't even need the wedge at all! She also takes a few bites of strawberry yogurt, some orange juice and some ice cream off a flat spoon for speech therapy. She doesn't cry when they bring the food to her mouth and opens her mouth for them. Which is a huge feat for her!! Speech tells us not to try to feed her on our own. We are finally able to talk to a speech therapist and get an ok t o brush her teeth. I know it really is the least of our concerns, but to mommy it is a super big deal! She actually allows me to brush her teeth with a little sponge on a stick without crying. Honestly, I think she enjoyed it! Nick informs me that he is staying with her tonight so I can go back to Ronald McDonald house and get some rest. He pulls the "I won't get to see her until next Friday" card.lol I don't mind him staying because he does need time with her plus I feel that she is much more stable. So, after making him promise he will sleep with her and make sure she doesn't pull her tube out and that he will call me for any questions or concerns I head to the RMDH for my first full nights uninterrupted sleep since 12/21.

January 6- I set my alarm (after Nick isntructed me not too) for 0745. Dress and am ready for breakfast by 0800. We are heading back to OCH by 0830. Of course, nothing happened during the night and she did fabulous. Her nurse during the night apparently checked on her every 1-2 hours to make sure she didn't pull her tube out. Nick looks no worse for the wear. Today is our rest day from therapy. We work with her a little on a few minor things that we were shown the day before. She has a really great day and is quiet and alert. It makes mommy and daddy very happy!

January 7- First full day of therapy. PT is scheduled for 0830 this morning. Shayleigh spends most of the morning prior to PT crying. She spends the whole 30 minute session with PT crying. Crying real tears! It is terrible and so mommy spends the rest of the day down in the dumps & crying. This is where my mom comes in and really becomes even more of a blessing. She watched Shayleigh so I could leave and get something to eat and to go to the store down the road and calm down. It is so discouraging to watch your child who is so smart and so advanced cry when someone is trying to "play" with her. Speech therapy comes and she does relatively well. She is able to eat a few bites of strawberry yogurt. OT is the saving grace of the day! He comes around 2:00 pm to bring her to the gym. My mom has bascially told me that I was to stay in the room and take a nap because that is what was causing me to break down. While they were working with OT, mom got to talking to the therapist and he had some encouraging words to say. I know this sounds silly, but I really do need encouragement too. I encourage Shayleigh and I try my best to stay positive and keep a good attitude for her, but nothing in life prepares you for this. As a mom, it is terribly hard to watch this and not break down every once in a while. Of course, baby brother doesn't really help the situation with all the hormones he's bringing in the picture. So, anyway, the therapist gives me a pep talk and I realize that it isn't the end of the world and it IS the first day of therapy. I think I have this expectation that we are here now, I fought so hard to get her here and I just expect her to be showing tons of improvement right away. I am slowly learning patience. Of course, we have the mutism that is causing most of our problems. Have I mentioned how very thankful I am that my mom is here?!?! She is willing and ready to step in when I need a mental break and she is also much more positive and sees the small changes that I miss. I keep waiting for something huge and she is constantly pointing out the small accomplishments and changes that happen each day. If it weren't for her...it would be bad. I would have such a hard time seeing the good. Shayleigh has a better afternoon and we discuss moving PT back later in the afternoon to help her perform better.

January 8- Shayleigh wakes up at 0100 this morning tossing, turning and crying. It is too early to give her more Benadryl (we have been taking it every night to help her sleep for a few hours), Ativan has been discontinued and the only thing we have to work with is Motrin or Tylenol. She sleeps pretty good after Motrin, but she is still slightly restless. We get her up for 0800 because we are supposed to have PT at 0830. We get her in her wheelchair (she was fitted for this sweet ride on the first day she got here) and we take off down the hall. She loves going for rides. We find out that PT has been moved to that afternoon. She seems to enjoy riding so we keep walking up and down the hallways and then we go to the library to read a book. She starts getting fussy around 10 ish so we head back to the room and I rock her. We lay her down for a little nap in the bed and we let her rest until around 1250. She is supposed to be dressed, in her chair and ready for the therapist at the time scheduled for therapy. We start the afternoon off with speech therapy at 1:00. She does ok. She seems to get frustrated and spends some of therapy crying. The therapist only stays with her and works with her for about 15-20 minutes. I have my first care meeting where everyone on the team comes together and we discuss plans for Shayleigh and plans for discharge. They set her discharge date at January 31. I really kinda freaked out. I was super surprised that they set it for so soon when she really had not had much therapy or progress.