August 20, 2013 - Catching Up

I've been posting to Facebook but not copying them over to this blog.

This crazy girl is just strutting around the house with no wheelchair, no walker, nothing! She even carried her own plate to the table and then to the sink!!!

August 17:
Here Bella is just showing off!

She's back!!! And getting stronger than ever! I was practically jogging to keep up with her!

After singing with Bella at the benefit, Faith sang I'll Stand By You for Bella. http://youtu.be/Y-7O0SjV_nA

I meant to post this the day after the benefit. Bella and Faith sang Titanium. Sweet voices singing together!
http://youtu.be/Tabv9YAVfKI

August 16th

She's back in the pool at therapy! Doing very well and having fun!

August 12, 2013 - A Big Setback

August 12, 2013 - Day 128

Bella fell Saturday afternoon :(

We were getting ready to go to a coaches get-together - car was started & cooling. I had loaded the cooler and then came in for the kids. Bella had tried to get herself from the couch to her wheelchair but it was turned the wrong way & she lost her balance trying to turn her chair around (of course she wasn't wearing her leg braces at the time). She twisted her foot and cannot bear weight on it now. We iced and elevated it over the weekend and then I took her in for X-rays today. Fortunately there is no sign of a fracture on the X-ray but it seems the damage to her confidence has been done anyway. 

This is so frustrating! I was just starting to get my fearless, swing-from-the-monkey bars, make up dances in your room (even if those dances are now done on knees or sitting), climbing the stairs alone (upright!), happy-go-lucky, honest-to-God Super Bella back. She has been doing so great for so many weeks and now she is scared to put weight on her foot. My mom asked me how I keep from screaming. I really don't know. I think I use the blog and Facebook as my way of screaming. 

I pray that now that she knows her foot is not broken she will be able to get back to the progress she had made after a few days of rest.

August 9, 2013 - Some Good News

August 9, 2013 - Day 125

Bella had a nightmare last night so she came into my bed! Do you realize how significant that is? She got herself out of bed in the middle of the night and into her wheelchair, went to the bathroom without assistance while sleepy, and then got to my room and climbed up into my bed! I've never been more excited to see a child in the middle of the night!

I've heard from adult GBS patients that regaining bathroom independence is their single most significant part of recovery. I can only imagine how it feels for an adult when it is so significant for a child.

Also, I had submitted some follow up questions to Bella's neurologist Dr. Castro after our visit last Wednesday. One was about two antibodies in the blood that when positive can indicate CIDP. Shortly after Bella's IVIg treatment, her blood was positive for these 2 antibodies but because Bella had so much donor blood, Dr. Castro wanted to retest. This time those antibodies are negative! While that doesn't mean with any certainty that Bella does not have CIDP, it is at least one less indicator that she does.

God is great! Thank you for the continued prayers!

August 7, 2013 - Major Improvements!

August 7, 2013 - Day 123

So much has happened lately, it's been hard to keep up the posting. The best news is that since our disheartening visit to the Dallas Neurologist, Bella's appetite has increased exponentially! I'm plying her with whole milk, Cool Whip, milkshakes, on top of her normal diet. We seem to have finally woken up her appetite! We'll give it another week and then see if all this eating is actually helping her to put on any weight.

This morning Bella and I met with the principal of her new school. Neither of us is scared anymore about school starting (well I'm still a little scared but Bella is not). Most likely Bella will still be in her wheelchair at the start of school, though she's improving at such a rapid rate now that it seems possible she could go with only her walker. She will be given all the accommodations that she needs, including not being graded on the legibility of her handwriting. Just 3 1/2 weeks until the first day of school!

Yesterday Bella *finally* got her AFOs (leg braces). I have not remembered to snap a picture of her in them yet but will do that soon. The braces fit the bottom of her foot and up her calf with Velcro straps across the top of the foot and just below the knee. They can really irritate the skin so she has to build up a tolerance to them. We're hoping to build her up to be able to wear them for full school days starting August 26th.

This afternoon, we left the wheelchair at home when we went to Bella's OT! She walked (without her foot braces) with her walker into the facility at a snail's pace but she walked! She did awesome with her therapy and then walked out WITH her foot braces & walker at a much faster pace! The braces make a world of difference!

I am so proud of Bella! She has faced this whole journey with such grace and I just pray that the worst is behind us.

Playing bean bag toss with Brody at therapy

Flying like TinkerBella in the net swing

Bella's Story in Pictures

We had some technical difficulties and weren't able to share this video at the Giving Bella Strength Trivia Night (and it's not compatible with iphone - can't figure how how to make it compatible). 

Bella's story in pictures:
http://youtu.be/EBAjOU8owT4

August 6, 2013 - Bella on the News!

August 6, 2013

Bella's story was on KVUE on Tuesday, August 6th. Links to the collage and story are below.

A great fundraising night with the family of Lockhart coach Brian Herman, helping his daughter, Bella. The story will be on later this week on KVUE (after the Manziel and ARod stuff slows down!)

For our out-of-town friends or anyone who missed the broadcast tonight, you can watch the video here:
http://www.kvue.com/sports/Giving-Bella-Strength---helping-the-daughter-of-the-Lockhart-coach-218551711.html

August 4, 2013 - Overwhelmed

August 4, 2013 - The Day After Giving Bella Strength

Overwhelmed is the word of the day - actually yesterday. The Giving Bella Strength trivia night was so much fun! It was wonderful to see so many people we love and completely humbling to (yet again) be the recipients of such an outpouring of love and support! Thank you! Special thanks to the wonderful organizers of this fun night - Tami, Michele, Emily, Laura, Diane & Barb (hope I didn't miss anyone)!

The local ABC affiliate, KVUE, came out to the Giving Bella Strength event and captured this photo.

Lockhart Coach Brian Herman and his family listen to one daughter sing in tribute to younger daughter Bella at a great fundraiser Saturday night in Liberty Hill.

We had some technical difficulties and weren't able to share this video last night (not compatible with iphone - can't figure how how to make it compatible). Bella's story in pictures:

http://youtu.be/EBAjOU8owT4

Look at Bella standing in this picture!
http://libertyhillsports.com/2013/08/03/saturday-aug-3rd-giving-bella-strength-family-fun-trivia-night-fellowship-church/

Giving Bella Strength Silent Auction - Bid by Email or In Person

Giving Bella Strength Event - August 3, 2013

These items are available at the silent auction 8/3 at the Giving Bella Strength Event in Liberty Hill. If you can't be there in person, you can make a bid on any of the items by emailing Michele Stratton at michelestratton@austin.rr.com between 6 PM and 8:15 PM CST tonight.

This beautiful full size quilt was handmade with love by Bella's Great Grandmother (Diane's mom)! Minimum bid $450.
Email michelestratton@austin.rr.com between 6 PM and 8:15 PM CST tonight to place a bid.

Belkin ipad keyboard and fast fitcover. Compatable with 2nd, 3rd and 4th gen. Minumumbid $75. 
Email michelestratton@austin.rr.com between 6 PM and 8:15 PM CST tonight to place a bid.

Dell 19" monitor. Minimum bid $90. 
Email michelestratton@austin.rr.com between 6 PM and 8:15 PM CST tonight to place a bid.

New technology torque balanced putter "Faldo by Edel" C87. Valued at $350. Minimum bid $200. 
Email michelestratton@austin.rr.com between 6 PM and 8:15 PM CST tonight to place a bid.

Samsung blue-ray player BD E5300. Minimum bid $50. 
Email michelestratton@austin.rr.com between 6 PM and 8:15 PM CST tonight to place a bid.

Scarlett O'Hara collector's doll. One of only 300 issued. Valued around $100. Minimum bid $50. 
Email michelestratton@austin.rr.com between 6 PM and 8:15 PM CST tonight to place a bid.

UT embossed cutter and buck duffle valued at $250. Minimum bid $200
Email michelestratton@austin.rr.com between 6 PM and 8:15 PM CST tonight to place a bid.

UT cooler valued at $90. Minimum bid $70
Email michelestratton@austin.rr.com between 6 PM and 8:15 PM CST tonight to place a bid.

August 2, 2013 - Giving Bella Strength Event is TOMORROW!

August 2, 2013 - Day 118

The Giving Bella Strength Family Trivia Night is TOMORROW night!!! We are looking forward to seeing so many friends and family there! Hope you can make it! 
There will be a silent auction with lots of really cool items up for bid. For those who cannot make the event but would like the chance to bid, our friend Michele will be taking email bids. We'll post pictures of the items and the minimum opening bid.
http://givingbellastrength.eventbrite.com/

August 1, 2013 - She Walked!

August 1, 2013 - Day 117

In spite of the unsettling news yesterday, I cannot help but feel excited, inspired and hopeful by this progress! The hand struggle at the beginning of the video is Bella scolding me for supporting her too much. Please excuse the extremely messy play area (which is upstairs and Bella scooted to all by herself again!)

July 31, 2013 - A Long & Trying Day

July 31, 2013 - Day 116

Wow! Today was physically and emotionally exhausting! We left for Dallas at 9 AM and got back home at 11 PM. Bella's appointment was at 2 and took 4.5 hours! I expected 1 hour at the most. Wow! The most disturbing and shocking thing is that Bella has lost another 4 pounds. She admitted to the hospital on April 7th at 80 pounds and weighed in today at 69 pounds. She's grown an inch and a half so she is looking more and more like a twig! Dr Castro is extremely worried about Bella's weight. She brought in a nutritionist who gave me some pointers on how to get more calories and fats into her food (whole milk, put heavy cream in her spaghetti sauce, milkshakes or other supplemental drink 2-3 times per day, no drink with food - only after, etc). We've been instructed to make sure Bella eats every 1-2 hours while she's awake for a minimum of 8 times a day. Bella heard all of the concern and instructions so hopefully she will cooperate.
They ran an EKG, an extensive pulmonary test and drew a sizable amount of blood for testing (they're testing about 8 different things - I can only recall a handful right now). Dr Castro is thorough to say the least and I appreciate that. She brought in physical and occupational therapists to evaluate Bella and prescribe modifications for school. I asked about horse therapy because that was recommended by another parent and both the therapists and Dr Castro felt it would be wonderful for Bella. Now I have to find a good, local facility. If you know any place in the south Austin, Kyle, Lockhart, San Marcos area, please let me know.
Dr Castro is still concerned that Bella could have CIDP (chronic GBS). I thought for sure we were in the clear from that or maybe I was just blindly hoping. During the physical exam, I noticed that Bella still can't tell the difference between up & down when the doctors move her toes & fingers while She has her eyes closed. I don't believe this is dramatically uncommon and Dr Castro explained why that could indicate CIDP but I cannot recall right now what the explanation was. I'm still so scared! Bella and I were both in tears at the thought of having to return to the hospital again. Doc said if it became necessary, she would not do IVIg again because Bella relapsed right away after that. Instead, Bella would be admitted and have plasmapheresis again. I cannot fathom that yet. I can only pray, hope and beg that the worst is behind us and Bella's weakness was due to fatigue and her weight loss.
I'm trying to remember what else we heard but I'm so tired I can't think. Because of the concern with Bella's weight, we have to return soon - which in the neurology world is about 7 weeks. We go back on Sept 23rd. They are getting us in on a Monday so we can make the trek up Sunday night and stay overnight.
Please keep praying for Bella and for all of us. Unfortunately this appears to be far from over.

July 30, 2013 - Day 115

July 30, 2013- Day 115

Bella spent last weekend at her grandparents' house and did really well. She had some foot pain that we attributed to homesickness and she quickly recovered from. She does have an ingrown toenail now. You can imagine how amplified that pain is in a GBS patient who is already super sensitive! We soaked her foot in Epsom salt tonight and will try some other remedies tomorrow night.

Tomorrow we will travel to Dallas for an appointment with Dr Castro, the neuromuscular doctor who treated Bella when she was at Dallas Children's. I tried to find a local pediatric neurologist but GBS is so rare in children that I just wasn't confident in the experience of the local docs. I am anxious and hopeful about this trip. I hope Dr Castro is overwhelmed with Bella's progress...we'll see.

The Giving Bella Strength event is THIS Saturday! We hope to see you there! Ticket information has been clarified and prices adjusted so check it out!
http://givingbellastrength.eventbrite.com/

July 25, 2013 - The Climb

July 25, 2013 - Day 110

I've missed a few updates to this blog so I'll post a couple back to back.

Here's a nice article about Bella's battle: 
http://libertyhillsports.com/2013/07/24/bella/

While I was working out after work tonight and Faith was playing the piano, Bella scooted up the stairs all by herself and then crawled to Faith's room! She's getting so mobile and sneaky! It's wonderful! Faith & Bella are now watching a show together upstairs.