September 27, 2013 - Lockhart Homecoming

September 27, 2013

This week is Lockhart's Homecoming and last night at the community pep rally, the grandfather of one of the players approached Bella's Dad (aka Coach Herman) and shared how inspired he is by Bella. He said that the entire Lockhart communityhas been touched by Bella's strength and infectious smile. And on behalf of the community, he presented a mum for Bella. We are so touched by this gesture!

Bella also made the very brave decision to run for student council president. She gave a speech for the entire 5th grade today. While she was not elected, we are so proud of her for trying! It takes such courage to get up in front of your peers. We're so proud of her!
And this crazy girl is walking around the sidelines with no braces!

September 23, 2013 - Praise God!

September 23, 2013

Short update is that Bella is doing beautifully! She weighs 78 pounds with no shoes or braces! She's 4'10.5" so that weight puts her in the 50th percentile. Still skinny but not scarily so.

Dr Castro said she was so worried about her last time that she had nightmares last night because she knew Bella was coming in today. But she was smiling from ear to ear during the exam. Bella's strength in most of her limbs is back to 100%! She can now tell in her right toe whether dr is pointing it up or down. Her left toe is still lacking but last time she couldn't tell in either toe. Her reflexes have come back in her hands/arms! They may never come back in her legs but dr says reflexes only exist for doctors to check . With each step of the exam, Dr Castro marveled at how beautifully Bella is doing. As bad as the last visit was, this one was every bit as good! Bella will have another follow up in 3 months on January 2. Bella really is kicking this GBS nonsense to the curb! Praise God!!!

September 22, 2013 - Preparing for the Follow Up

September 22, 2013

Bella's follow up neurology appointment is tomorrow in Dallas. The last appointment did not go as well as expected so I am a little nervous about this one. She's doing so well, and I know she's gained weight. Hopefully the exam will prove that she's kicked this GBS nonsense to the curb! Please pray for some very good news.

Bella got to experience her first Texas Longhorns game last night. With the help of friends Jeffrey and Shelly, several kind-hearted stadium employees, and her Daddy's strong back for piggy-back rides in and out of the stadium, she went with only her walker! She did really well! She was not bothered by the noise and after adjusting to the crowd, she had a really good time. Best part is that the Longhorns won!

On the drive to Dallas this afternoon, Bella expressed how happy she is that her hands are strong enough for her to draw. Since she can't do her favorite thing (dance) yet, she's very grateful that she can do her 2nd favorite thing. I'm continually inspired by her positive outlook!

Send some good thoughts her way tomorrow please! I'll post results as soon as possible.

September 12, 2013 - Sweet Sibling Love

September 12, 2013

Bella was so excited to finally be capable of swinging again -earlier tonight at her grandparent's house. It's awesome to see her able to be active again. 
We got good news and bad news Friday/Saturday. The good news is that with braces on Bella is now 79.3 pounds! We're hoping that means she's at least 76 without braces & almost back to her pre-GBS weight of 80 pounds. The bad news is that she has strep. Her in office test Friday was negative but the 24 hour culture came back positive. She's handling it well so far & able to go back to school tomorrow with 2 days of antibiotics in her system.

September 10, 2013

Brody just exclaimed, "Mom, look what Bella can do!" This is a reenactment of his original reaction. It's so sweet how excited he got and how strong Bella is getting!

September 10, 2013 - Back to Therapy

September 10, 2013

Bella had her first therapy session at Dell today since school started. She did awesome! Her therapist was so impressed with her progress! 
Good news: Bella's hand strength had been measured about 6-8 weeks ago by a few different tests. This note lists some of the goals and her measurements today. Her grip goal was to measure a 10 on each hand. She got a 20.3 on her right and a 17.6 on her left. That's SO good!!!
Bella was asked to write 2 sentences with pen and 2 with pencil. She was not told what to write. Her paragraph reads:
Not being able to dance is hard. I really miss dance classes. I'm dancing on my knees in my room. I'm gonna be dancing on my feet soon.
True optimism from a true fighter and inspiration! Go Super Bella!

September 5, 2013 - Good Strides So Why Do I Still Get Sad and Mad?

September 5, 2013 - Day 152

I nearly lost it at work today. I was sitting in a co-worker's office and admiring a beautiful picture of her 11 year old daughter dancing. It is one of those pictures that was just captured at the exact right moment and is really a piece of art. I started thinking about Bella and how much she loves to dance. I prayed that she will get to dance again - not just wiggle around but do the ballet and tap dancing that she longs to do. And I got sad that she cannot do those things right now. She wants to so badly. In spite of how well she is doing, I get mad sometimes. I really hate to admit it. I feel guilty for admitting it but I do get mad. I know there are so many people facing worse fates. There are so many moms who would give anything to be able to say that their child is improving little by little each day. I feel like less of a person for feeling sorry for myself and for my child's fate. I can't help it sometimes though.

Bella, on the other hand, is the poster child for optimism. She inspires me so much with her positive attitude. On Tuesday and Wednesday of this week, she went to school with only her walker! She was tired at the end of the days but still in a good mood. She took her wheelchair today because she was having foot pain. Good news on that: I discovered tonight that the pain is caused by carpet burns from crawling at home. I'm so relieved since that is an easy thing to fix and does not require a visit with the orthopedics specialist.

School is so good for Bella! She got 110 on her first spelling test! I've lost track already of how many AR tests she's taken (and gotten 100 on). She gets a book from the library almost every day and finishes a book every day or two. Her handwriting is not neat but it is legible and she has not needed to use the school computers yet (other than for the AR tests). Best of all, she's SO happy! That girl needed to have her mind challenged!

We haven't lined up any more home therapy sessions yet. Bella needs to get back into some physical therapy but I'm not sure how to work it into the schedule. She will go to Dell on Tuesdays beginning next week. School is essentially 8 hours of OT so I am less worried about that now.

My dear friend Elaine gave me a bottle of rose oil and suggested that I massage Bella with it and pray for healing. Every night for 4 months, I have massaged Bella's back with the rose oil while we pray together. I began to notice the knots in her shoulders getting worse and harder for me to break up so I decided to bring her to my chiropractor. I am a long-time believer in the benefits of chiropractics and Bella has felt immediate relief with her weekly adjustments. I think I can add in some professional massage now that she is less sensitive. I think I'll schedule a "couple's" massage and get my own knots worked on!

We continue to be overwhelmed by kinds words and prayers from friends near and far. The prayers are working. Thank you!

Wrapping Up August

A few posts from last week that I forgot to share:

August 23, 2013
Best news of the week is that I'm pretty sure Bella has gained at least 3 pounds! It's hard to be certain because she has her braces on now when we weigh her and the nurse estimated those weigh about 3 pounds. With braces, she's now 75 pounds so she's up to at least 72 without braces. Daily milkshakes and strawberries with Cool Whip in addition to Bella's perked up appetite are really working!

August 25, 2013
At the movies Sunday, Bella refuses to let me hold more than her hand. Kinda freaking me out - in a good way!

August 26, 2013 8:11 AM
Today is Bella's first day of school since April 5th. She was excited and a little nervous. I'm a lot nervous and sad. I pray she makes some new friends, has strength to get through the day and week, and comes home as excited as she left! Happy First Day of 5th Grade, Bella!

August 26, 2013 6:03 PM
First day of school was a success for the most part! Even though I thought I sent a TON of food for Bella - lunch plus several snacks - she finished all of her food long before the day was done. She went to the nurse twice to rest and fell asleep in there once. Because Bella had eaten all of the food I sent, the nurse gave her some Goldfish to help her get through the afternoon. She made two new friends and one of them pushed her wheelchair around all day. Although Bella is able to walk now, she tires very easily. Her school hallways are so long that we wanted to try the wheelchair this week. I'm hoping she can build up to only using her walker once she gets adjusted to the long days.
She was exhausted when I picked her up but once I got some milk and food in her, she perked up and was very happy.
Bella did say that two boys laughed at her today (if I could get my hands on them...). Luckily they were not in any of her classes (they're in the ESL class and laughed at her through an open doorway when she was going down the hall). I'll speak to the administration if it happens again. Bella really didn't seem too phased by it. She's a strong girl, I suppose a couple of rude boys
wouldn't bother her much at all. It sounds like the kids in her class were polite and accepting.
I'm sending her to bed very early tonight.

August 26, 2013 6:45 PM
Bella realized at school today that it's her half birthday! I didn't realize far enough in advance to make her a real half birthday cake so we substituted with a fresh cookie and ice cream and half the birthday song.


August 27, 2013
Bella had an even better second day! She made another friend - one who reminds her of her best friend from her last school. She only went to the nurse once late in the day to rest. She had plenty of food today. She took a good nap right after school and then was in such a great mood that she sang the entire evening. We're so relieved!

Oh and those same 2 boys laughed at her again today - this time in the cafeteria. I'm contacting the school even though Bella says it doesn't bother her.

August 31, 2013
Bella survived the first week of school with flying colors! Friday was her best day and she was in such a good mood Friday afternoon! She had an issue with a different boy teasing her but it was quickly taken care of. I'm very pleased with how the school is handling everything! They are very supportive!
Bella has really enjoyed having school work again. She received spelling words on Monday and was ready for the test Monday night. She's pretty sure she got 100 on it. She has homework this holiday weekend that she is excited to do.
Although Bella has been walking more at home, she was too worried to attempt to walk at school this week. She's planning to bring both her wheelchair and walker next week to get a little more comfortable walking around.
We took the week off of therapy because school is essentially an 8 hour OT session. Her therapist will be out of town next week so Bella will have another free week before she goes back to Dell.
It's a great start to the year! Looking forward to continued improvements!