May 10, 2013 - Day 34

May 10, 2013 - Day 34

Took this pic while we were sitting in the Obama mess yesterday. This was what I looked at for 5.5 hours - my sweet Bella inside.

4:57 PM

After our dramatic arrival into Austin and my sudden illness, I didn't share any more last night. Bella is the 2nd patient at Dell's new IP rehab section...ever. No wonder it was so hard to get in. At this time, they only have 6 beds and the rehab rooms are on the same floor as PICU, so you have to use a pass code to gain access to that section. Kind of strange planning in my opinion, but it's okay. Because our nurses only have 2 patients, they are very attentive. I think the best part is that none of the stuff in the room has been used before. Bella's the first patient ever on her bed. TV still has a sticker on it. The bathroom is nice and large with easy wheelchair access. And the entire facility is beautifully designed. I haven't learned my way around yet but what I saw was very nice - doesn't look much like a hospital at all. 

While I'm banned from the hospital, Brian is going to be writing the daily Bella updates 

Bella just texted me to say she took 3 steps and stood ON HER OWN! Holding onto nothing! We are super pumped! 

10:22 PM from Brian:

Nicole has asked me to do the updates since she is ill and not able to be at the hospital for a couple days. Today was a very good day at Dell Children's. Diane stayed overnight with Bella so I could take Nicole to Urgent Care last night. I got up this morning threw some clothes in a bag, made sure the other two kids were ready for school. Unfortunately, Faith wasn't well enough for school so she stayed home too. On the way home from school today Brody made the observation that ALL 3 girls were sick and that only he and I were well. Back to this morning, Aunt Karen, my mom's sister, took Brody to school. We are so blessed to be here and have so much help during these difficult days. I went to the hospital to relieve Diane so she could go to work and then the fun began. Bella got up anticipating early PT/OT sessions but they didn't really start until 10. Everything is so new here and routines are just being established. So she and I went down to the cafeteria and then to the gift shop for some mother's day shopping. We also grabbed a couple movies from the library though we have to use the laptop to watch them since the tvs are so new the dvd players aren't compatible. We got back to the room just in time for OT. Luckily, her schedule is set now for each day and we will know what to expect. She gets so much attention being one of only two rehab patients. She started with OT and Emily had her dress herself, socks and shoes included which was a first. Then she brushed her teeth and hair. Emily was really seeing how much she could do for her first visit. Kat, Bella's PT, had already evaluated her and was ready to push her forward. I try to be out of the way as much as I can because I believe the therapists get more out of her when I am not in the room. She did some sitting on a stability disc and I think that was the strongest most stable I have seen her on one of those. She threw a light medicine ball at me multiple times and even some from overhead, which is also a big improvement. She did some core work by leaning back and touching a ball behind her with her back and then sitting up. She did some very strong kicking and marching while seated on the therapy table and then she did some standing up and trying to remain standing. After her first rounds of therapy we watched the original Willy Wonka and she really enjoyed it, she laughed hysterically when grandpa Joe danced in his night gown after getting the golden ticket. She thought he looked like a girl. I was ashamed to admit that she hadn't seen it until now. After the movie it was time for round 2 of PT and OT. I stayed in the room looking for housing in Lockhart but apparently she was very strong for PT and then came OT. Emily is really going to push Bella. She made her get out of her wheelchair to get on a mat in the room either to sit or stand while decorating her door. She has bubble paint I think it is called and she drew her name with hearts and flowers all over her glass door. Getting out of the chair to the mat didn't go well and Bella shrieked in pain and cried for some minutes after. However, she was determined to create so she shrugged it off and got back to work. Tom came to stay with Bella while I ran to Lockhart to get Brody and while I was gone Bella did an unassisted transfer from bed to chair and then chair to bathroom which consists of standing, stepping, sitting, rolling, standing, stepping and sitting again. She showed me when I returned. To be honest, I was scared to death because I have been lifting and carrying her so much it was hard not try to support her weight. She set me straight and said to let her do it just be there just in case. Her progress is remarkable right now yet there is so far to go. For dinner she and I went to the cafeteria and got HUGE pizza slices then went and sat by the waterfall to eat. We hustled back to the room though for one more movie she hadn't seen, Daddy Daycare, very appropriate for the day! We both laughed a bunch and she told me how much fun she was having with me and of course I AGREED. This has been one of her best days, she is confidant, excited and very well taken care of here at Dell. We love Austin so much and are so glad to be home. We prayed again tonight that each day she gets stronger and I can't wait to see what tomorrow brings. We thank all of you that have been praying for Bella and our family. It is overwhelming when I think of how many people that are praying for us, who may or may not have ever seen Bella or any of us. THANK YOU ALL and GOD BLESS!

10:36 PM:

Bella's artwork on her new hospital door.