Tuesday, July 2, 2013

May 16, 2013 - Day 40

May 16, 2013 - Day 40

4:48 PM:
Doctors - both the neurologist and rehab docs - decided Bella was well enough to go. We're home free!!! Please God let it stay that way this time!

10:42 PM:
I missed a really good surprise today. Mickey and Minnie visited Dell and Bella got to have her picture taken with them. She was also interviewed by Fox 7 and will be on the morning news. So bummed I missed that!

The doctors and therapists agreed that with Bella's strong determination, the biggest problem is going to be keeping her from doing too much and wearing herself out as she did the last 2 days. 

It's really good to have Bella home! We all watched the Idol Finale together and the girls are now asleep in their shared room at Grandma and Grandpa's house.

So sad I missed Mickey and Minnie today but glad Bella got to see them!


May 15, 2013 - Day 39

May 15, 2013 - Day 39

From Brian @ 9:15 PM:
Just met the father of, Josh, the boy next door. Please add them to your prayers. 15 yr old Josh was crossing a street after school on April 15th and was struck by a car going 55mph. The doctors removed a large portion of his skull to allow his brain to swell and heal. I assume they'll put it back when they can. He may or may not regain sight in one of his eyes. Currently he can not communicate. While dealing with this he also contracted pneumonia. Parents should never see their children suffer. Please hug your kids and tell them you love them!

Pops, a beautiful Clydesdale, came for a visit today. He was staring me down in one picture!


11:19 PM:
Today was the first bad day that Bella has had at Dell but it was still better than any day that she had at Dallas Children’s or Baylor. She woke up nauseous and with a headache. The headache went away with her shower and the nausea subsided a bit. Her morning PT session was spent working on some stretching and core exercises. Bella was the weakest this morning that she has been in several days. We went from her not needing any assistance to transfer last night to needing between 25-50% support today. She’s still much better than she had been but I don’t like seeing any delay or stalling in her progression.
At lunch we met with Barbra Sonnen-Hernandez, a GBS survivor and advocate. She brought Bella some sweet gifts and shared her story with her. She also gave me some good advice. Apparently May is GBS awareness month and Barbra took a picture with and of Bella. Both are now posted on her site:http://www.barbrasonnenhernandez.com/Advocacy-News-.html
Bella swam again this afternoon. While she really enjoys the pool, I think the swimming may be what is causing her weakness and fatigue. We’re going to ask that she not swim tomorrow. On her way to the pool, she walked about 68 feet with her walker. I try to remember that even though she's weaker today, she's still come so far!
According to the doctor, our insurance company wants to discharge Bella tomorrow. Brian and I don’t feel she’s ready – especially given her weakness today. The doctor will request another night most likely. We’re still hoping she will be discharged Friday but need to see some perkiness tomorrow in order to get out then. I wish her doctors and therapists were determining when she should be discharged rather than insurance!


May 14, 2013 - Happy Birthday to Brody

May 14, 2013 - Day 38

The Star Wars cupcakes were a hit at school and the homemade Star Wars cake and family birthday party were a hit at the hospital. Sure not the type of birthday you dream of having for your child, but we made do with what we could (and it was definitely better than the strawberry shortcake themed 4th birthday party we threw in a bar in northern Minnesota for Faith after a Bemidji State football win when Brian was coaching there).
Bella had another great day of therapy! She practiced walking with her walker, standing and sitting without plopping. OT worked with her on self-care and had her stand to brush her teeth. Tonight she stood for 2.5 minutes while brushing her teeth!
In her afternoon PT session, Bella got to have aquatic therapy! She walked in the water and practiced twists and kicks. She was so tired at the end of 45 minutes in the pool that she couldn't walk for a bit afterwards. Not surprising!
Afternoon OT was spent working on fine motor skills - playing with putty and small objects.
Bella is still having foot pain and that still bothers me more than the nurses. I just don't want anything to keep her from advancing as well as she has been.
She is really building up her stamina these days. She works hard in therapy and doesn't get as tired as she did at Dallas. Makes a big difference when her entire focus is on therapy and not treatments! She did well at Brody's hospital "party" until she kicked the table with her bad foot.
I must admit that because Bella has already had one relapse, I'm cautiously optimistic about her recovery this time. I don't want to seem unexcited, I just think I will be scared for many months. I pray that we never have to go through this mess again!

The therapy pool. Bella is laughing & kicking her feet in the pic with her head thrown back. She had a ball! 



Monday, July 1, 2013

May 13, 2013 - Day 37

May 13, 2013 - Day 37

Super late with my post tonight. Today was my first attempt at working after a week and a day off. I'm not very good at it right now but I'll keep trying and will get back in to it eventually. Brody's birthday is tomorrow so I spent a frantic evening baking cupcakes for school & a cake for our family party at the hospital. My mom had convinced me to just buy the cake & cupcakes this year and I had agreed. I don't remember now why that changed. Mom stayed at the hospital with Bella tonight because Brody was very concerned about both Brian and me seeing him the morning of his birthday. Unfortunately my night away from the hospital is not restful...but oh well.

Anyway, Bella's therapists at Dell are AMAZING! However, they don't really like a lot of involvement from Mom. I wish they would let me participate but it seems to be more beneficial for Bella that I'm not. I did get to see how much of an improvement Bella has made since I got sick Thursday. As Brian mentioned the other day, she can get up from her hospital bed, stand up and transfer to the wheelchair without any assistance. She can do all of her own bathing and grooming (with supervision to prevent falls). OT wants her to start standing to brush her teeth during their morning session tomorrow. It's incredible how much progress she has made since she moved to Dell!
Tonight Bella demonstrated for us just how far she's come. She walked with her walker - supporting 100% of her own weight from her bed to the nurses station in the hall and back. Awesome!


Bella's big-as-yo-face pizza from lunch today. We ate outside.

Faith & Brody leaving the hospital tonight.


May 12, 2013 - Happy Mother's Day

May 12, 2013 - Day 36


Got a little jail break Mother's Day surprise and an early dinner at outback today! Doctor & nurses were in on the jail break but were getting nervous when we showed back up just before the 7 pm shift change.


 10:48 PM:
Happy Mother's Day to ALL moms out there!
Mine started out kinda sad but is ending on a high note. I woke up too early and only had one of my babies in the same house as me (Faith). Brody was in Mabank with my parents and Bella was at the hospital with Brian. When Brody got home at 2:30, he wanted me to get back in bed so he could give me lunch in bed. He was so concerned about serving me a meal in bed that we made a deal that he could make me breakfast in bed next Saturday (after letting me sleep in). Bella spent yesterday afternoon and all morning today making pictures and videos for me. And Faith, well, Faith is Faith - she posted a sweet message on Instagram (after seeing Bella's post on Instagram). I think she forgot it was mother's day without her Daddy and siblings around to remind her. (Guess I know which child will not be taking care of me in my old age :))
Anyway...the early surprise Outback dinner came about 3:30. Brian had arranged the whole thing - with the nurses and doctor, with Outback and with my dad. His mom and aunt, my parents and our whole family got to eat out together. My appetite isn't completely back yet but the meal was still wonderful (and I have half a steak to eat tomorrow). Bella got sad during the meal because she kept dreaming of going home after dinner. So we decided to extend the outing just a bit and take her back to my parents' house to see Zuzu. We weren't able to stay very long but it was nice, just for a few hours, to be together again in the outside world.
Bella did very well being up and out in the world for so many hours. Her foot is still hurting quite badly and that concerns me more than the doctor I think.
The outside visit was not officially allowed but the security at the entrance to this hospital is much lighter than Dallas. The nurses just wanted Bella back before the shift change at 7 PM so I got a call at 6:50 asking if I knew when Bella might be back in her room so the doctor could examine her. Fortunately we were unloading the car in the hospital parking lot and rushed in just in time.
Best news of the day is that the doctor is hoping for a discharge date this Friday! We have Taylor Swift tickets on 5/21 and are determined to be home free (with daily outpatient therapy) by then!
 


Bella reuniting with Zuzu. Faith caught zu snuggling in some of Bella's laundry on Saturday. 






May 11, 2013 - Day 35

May 11, 2013 - Day 35

1:52 PM:
Faith made me cry today. Well, not really but she walked in the bedroom (guest room at my parents' house), saw me sitting on the floor surrounded by piles of dirty laundry and staring into space. It was the question "Mom, are you okay?" That set me off. Sorting laundry and not having Bella's clothes in the mix just kills me. I miss my life as it was.

9:29 PM (from Brian):
Bella has the laptop so this will be short. Today was good mostly because of visitors. Her therapies were good, however, her foot was full of pain from yesterday. She drew, did puzzles, and played with putty for OT. Her PT consisted mostly of core work staying off of her foot. She amazed the weekend therapists by her creativity making up new activities and exercises. The biggest accomplishment was her completely bathing herself. But the highlights were her best friend Avery visiting and then our good friends the strattons brought her Olive Garden for dinner. She is in very good spirits today. 
Bella drawing the waterfall in the healing garden earlier today. She says she's got her artist skills back 

Reunited with best friend Avery!




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.