July 24, 2013 - Showing Off

July 24, 2013 - Day 109

A quick update on the last several days. Saturday morning was very rough. Bella was very grumpy. She had one of her little tantrums and got so upset that she moved herself to the couch and then knocked over her wheelchair. Side note: prior to GBS, Bella never exhibited this kind of behavior. These occasional tantrums and frequent moodiness are a direct result of GBS and of losing her ability to walk and dance. Perfectly understandable but difficult to deal with nonetheless. She cried about hating GBS and hating her wheelchair. Brian and I each spent some time talking with her. I then pulled out the iPad and showed Bella all of her Facebook comments from the days before. All that love and support turned her mood around! We're so grateful to have this community of people to turn to to lift all of our spirits!
On Sunday we went to mass and then to see Despicable Me 2. Bella has gotten strong enough that we always leave the wheelchair leg rests at home. Just a month ago, her legs would have tired too much being out of the house that long - especially without the leg rests. During mass Bella pulled herself up to stand several times. While I know she's so much stronger, I still get very concerned when I see her upright without someone right next to her.
We're still waiting on insurance to approve additional physical therapy visits. This week Bella is down to 3 OT visits at Dell and next week she goes down to 2. I'm so uncomfortable with this but there is little I can do to change it at this time. Bella thrives off of these appointments and off of the daily therapy she is getting with the PT students. In fact last Friday evening when one of those students was working with her, I heard a knock of the door of my upstairs office. Bella had walked all the way up the stairs with her therapist! She was so excited about getting  up and down the stairs one time that she insisted on doing it again. The 2nd time was a bit too much and possibly contributed to her exhaustion and moodiness on Saturday.
Today Bella and I had our first appointment with a psychiatrist. Although Bella has had many more good days than bad days lately, I still think she will benefit from the counseling. The doctor was impressed that Bella has already figured out several coping mechanisms on her own. For example, a few weeks ago she started reading avidly again. And every night she escapes in a book, which helps to calm her fears and allow her to sleep better. We'll go back to the counselor once a week for a while.
School registration is next Monday so we'll begin to find out quite a bit more about all that will be available to her after we get her registered in her new school.

Came out of bathroom where I was supervising Brody's bath to check on Bella only to find an empty wheelchair next to the stairs. Crazy girl had wheeled to her walker and then walked herself to her (downstairs) bedroom and gotten in bed. Amazing (and momentarily frightening)!

Bella received so many cool gifts while in the hospital but she was too sick to make use of most of them. They serve as excellent OT projects now!

After getting herself in bed, Bella decided to show off

July 19, 2013 - Big Steps!

July 19, 2013 - Day 104

A little awesomeness for your Friday! We need to work on her posture but at least the confidence is there. I thought she was getting her foot braces today but it turned out to only be an appointment to take molds of her feet. The braces will take another 2-3 weeks (so frustrating).

If you ever know someone going through this, push really hard to get the prescription and appointment to be fitted for braces as soon as you're discharged. I have been pushing/asking all that time but still had no idea how long this would take!

July 17, 2013 - Super Bella is on a Roll!

July 17, 2013 - Day 102

I have intended to post an update for the last week so I won't remember everything. Bella is doing awesome! We spent last weekend in Port Aransas. We were very concerned about how Bella would handle the strange accommodations and the ocean. It was not all easy but overall it was fun for everyone. Bella and I sat in lounge chairs and let the waves splash us. She sat up and tried to hold herself up against the waves but even when they knocked her back against the seat, she sat up again. It was great core work and she was just having fun! She swam in the hotel pool a lot and slept really well every night!

Bella at the beach - July

(a month ago she wouldn't have been able to support herself like this)

Monday (7/15) we were back to the real world and back to therapy. Bella couldn't wait to get back to therapy. She's happiest on the days that she has her OT appointments. She continues to have her "best day yet" in therapy. I'm disappointed that we've run out of insurance-approved PT visits so Bella is now only getting OT. However, on Tuesday they left her wheelchair in the lobby and Bella walked with her walked all the way back to the therapy gym. That's probably 200 or so steps. She can now walk with her walker with no assistance! Short distances only, though. Bella said she could feel her legs burning but loved it because she knew how hard they were working. She got on a scooter board again - the smaller, more difficult one than she was on before. It's incredible how far she's come since the end of May when she was too scared to get on the floor or a scooter board with the assistance of two therapists!

Punches with a band while sitting on a Bosu ball

Because of insurance limitations and the need to assist Bella with stretches and all kinds of therapy, we have a couple of physical therapy students who take turns coming by to work with her for 2 hours at a time. We were able to add a second student just this week so Bella will start getting the additional therapy 6 days a week. She loves every minute of it and we can really see the improvements!
Last night after a home therapy session, Bella decided to start showing off! First she discovered she could wiggle her toes! This is a MAJOR accomplishment and one step closer to Bella getting back to ballet! She is SO excited! She also started pushing the limits of her flexibility. Her pain was so bad for so long that she could not sit upright, much less touch her toes. Now she can lift her leg to her cheek.

Bella is also now able to crawl. Her core strength is coming back and her arms and legs are strong enough to hold her up to crawl on her hands & knees. She's able to crawl to the couch and then ease herself up onto it! And this morning, she did 6 transfers - bed to wheelchair, wheelchair to couch and back, wheelchair to table and back. I kept losing track of where she was because she was not in the last spot I had seen her.
This afternoon Bella was standing at her walker and doing mini plies. I can finally imagine her going back to school next month and beginning to return to a normal life - maybe not at the beginning of the school year but hopefully this fall.  She has the most amazing attitude and spirit! We thank God for these good days!

Benefit for Bella - August 3, 2013

Our wonderful friends and family are organizing a family fun night of trivia, fajita dinner, music and fellowship to benefit Bella. More information can be found here:
https://givingbellastrength.eventbrite.com/?nomo=1

July 8, 2013 - Small Steps but in the Right Direction

July 8, 2013 - Day 93

Bella had a bit of an emotional letdown over the weekend. She was extremely fatigued all weekend but maintained her physical strength when she needed to move. I live in constant fear of another relapse. Since she's shown continued improvement for the last month, I want to believe that I don't have to fear a relapse again. Nonetheless the fear is there always nagging at me. This morning didn't help. Bella was still sleepy this morning and had a little more trouble walking. That was not as alarming but on the way to the bathroom, her legs gave out on her completely. Fortunately, I had my hands under her arms and was able to grab her before she collapsed all the way to the ground. It scared both of us though.

On Friday, Bella's OT told me that Dr. Nelson (the physical movement and rehab doctor) had instructed her multiple times not to overtire Bella. The doctor says that pushing a GBS patient too far can encourage a relapse. I had not heard that before but now feel I have something else to fear. Ugh!

I was not able to attend therapy with Bella this morning but got a full report when she got home. Once again, her therapists said this was her best day yet! In the gym at Dell, they have a short set of stairs – 3 smaller steps on one side of a platform and two more normal height steps on the other side. Friday she scooted up the steps on her behind. In PT today, she walked up the steps with a little support from her therapist! I’m so sorry I missed it! She also sat on a yoga ball and did punches. She walked about 80 feet and practiced standing a lot. She graduated from the yellow stretchy band (in picture above - used for chest flies and other upper body exercises) to the blue band – skipping a resistance band in the middle. That’s an awesome demonstration of how her upper body strength has improved! Bella was very happy when she got home! Tomorrow she has another 2 hours of therapy and will have her last PT visit. I've not yet won the fight with insurance for more PT. We have one physical therapy student who is coming by 3 days a week to help Bella with her therapy “homework”. We are trying to line up another student to cover 3 more days but haven’t had success with that yet.

Bella's yellow stretchy therapy band - she's now too strong for this one!

Bella weighs 6 pounds less than her hospital admission weight. I tried very hard to feed her a Paleo diet since she was discharged because I believe all the research behind the benefits of that diet. However, Bella just wouldn't eat enough. She fills up very quickly and often doesn't realize she should be hungry or thirsty. I’ve allowed pasta, protein bars and shakes back into her diet. I’ve gotten to the point where I don’t care what she eats if she will just eat enough! I give her goals every day – to drink 2 large glasses of water, finish 2 cups of milk, etc. She did well today. I must admit it is very hard to remember to feed a 10 year old with the type of routine and encouragement you would feed a baby.

We are having more good days to bad days now. For a long time we had one good day, one bad day but now it seems to be 3 or so good days and then a bad day. Things are moving in the right direction and still achingly slowly improving. Although we all get impatient, we thank God for each new accomplishment and every small step forward!

Giving Bella Strength

July 3, 2013

My friend Blake created these shirts to show support for Bella.

https://www.bonfirefunds.com/giving-bella-strength/?r=7226



Here's another design:
https://www.bonfirefunds.com/giving-bella-strength-2/?r=7226

July 3, 2013 - Major Progress

July 3, 2013 - Day 88

Gotta share this awesomeness! Bella stood up all on her own will today!

July 1, 2013 - Day 86

July 1, 2013 - Day 86

Good God it's July! We're at the end of our 3rd month with this battle. I can remember the neurologist telling Bella way back during her first hospital visit that she couldn't promise her when she would dance again - she said it could be 6 weeks, 9 months, or longer. We've passed the 6 week mark and I pray we don't hit the 9 month mark. It is hard to continue to stay hopeful as the days and weeks and months pass.
We had a tough weekend emotionally. I've fought putting Bella on an anti-depressant because how much medicine can one shrinking 10 year old take? But after this last weekend, I really think she needs something to help balance her mood. She has so much trouble controlling her emotions. Honestly it is like having a toddler again. It is hard on all of us.
Saturday morning we had our first home PT visit. The lady that came is a PT student and is earning some extra money and experience by working with Bella. She came for 2 hours and was awesome! She comes back Tuesday afternoon. A second lady is coming by Wednesday evening to meet us and set up a schedule. We're hoping that the 2 of them can cover 6 days a week to add to the therapy Bella gets at Dell. My insurance has a hard max of 20 PT visits and Bella has had 17 already. I'm fighting the battle with them for more - pray I win that fight. In the meantime, her OT (which insurance will cover unlimited, go figure) is trying to incorporate as much physical movement as she can into Bella's OT sessions. We're hoping that the home PT visits plus our coaching will work even if insurance doesn't agree to cover more.
After a very emotional weekend where Bella focused on what she couldn't do and backed out of the bat cruise because of her limitations, she had an awesome day today. She walked with her walker and about 10% assistance at therapy and again at home. She counted 100 steps but I'm pretty sure she later did more while I was working. She rode a bike at therapy, transferred to a bosu (sp?) ball and bounced while she stretched with a band. The therapist sent the band home for Bella to work on her hand/upper body strength.

Getting sleepy so I'm going to stop here. Some friends are organizing a fundraising event for Bella to be held in Liberty Hill on August 3rd at 6. I'll share more details as I know them.

Riding the bike at therapy Monday

Carefully learning to walk

Bella going through a Coach Herman workout yesterday.

June 27, 2013 - Day 82

June 27, 2013 - Day 82

Bella just cried out - screamed is more like it. She says she couldn't find her iPod to text (it was on the pillow next to her head). Her feet are hurting her terribly tonight. I can't even imagine. They're tingling and burning. I hate this so much! God, please, please make her better! 
I have to confess that I broke down yesterday. I cried, begged and pleaded with God to take this pain away and give me my family back. I hate that I faltered. I've done pretty well just trusting in His plan but I'm just so tired of this!

June 25, 2013 - Best Day So Far

June 25, 2013 - Day 80

Bella's PT said again today that it was her best day of therapy yet! She walked alone with her walker and tried on one too small leg brace/foot lift. Bella said the brace (even though too small) was miraculous because it lifted her toes off the floor and made stepping so much easier. The PT has finally ordered some for her. I've been asking for a month - not really sure why it took this long.
When she's taking steps at home - especially when she's barefoot - she has to look down at her feet to make sure they are planted flat. She cannot feel when she is standing on the side of her foot and could seriously damage her ankles if she's not careful. According to another GBS survivor, broken bones are an extreme concern for GBS patients because the messed-up pain signals might not get the message to the brain that there is a break. Just a little more for us to worry about! 

Look at what I found - bittersweet memories. Hope to see her tap dancing again one day. This was 4 years ago.

June 22, 2013 - Building Bridges

June 22, 2013 - Day 77

Morning didn't start out so great but Super Bella finally made an appearance. Check out these bridges!

In the video I posted earlier, you can see Zuzu closely watching Bella's bridges. This is the sight every time we try to leave the house with Bella. Zu expects to go too - almost as if she's afraid of Bella leaving for a long time again (like going back in the hospital) so she doesn't want Bella to leave without her loyal puppy. If only dogs could talk! 

June 21, 2013 - Slow Progression

June 21, 2013 - Day 76

Bella’s PT said again today that this was her best day of therapy yet! Bella walked on the parallel bars forward the length of the bars twice and side-stepped the length of the bars and back! She also did 10 strong stands. Standing up from a seated position is extremely difficult for her. Pay attention to all the muscles you use the next time you stand and you’ll understand what she’s facing. 
In OT, she did the best bridges (otherwise known as pelvic tilts) that she has done since she got sick! Core strength is vital to Bella’s recovery and the ability to do these bridges will help with dressing, walking…everything.
Yesterday Bella got in the pool at therapy. She walked well then too and had a blast. Two awesome days of therapy!
I read recently about the extreme pain that accompanies GBS – pain that is often not mentioned because of the obvious attention to the paralysis. Bella began to feel some of that pain in her feet tonight. She said she didn’t know what tingling was before. This felt like needles sticking all over her feet. We tried to explain to her that the pain is good because it means that she’s getting the feeling back. We’d been told that warm foot soaks help with the pain so we tried that tonight. It helped a bit I think.
We’re feeling good about the way things are going - slow but moving in the right direction.

June 18, 2013 - Day 73

June 18, 2013 - Day 73

2:58 PM:

From last night - Bella & Brody snuggling. I intended to write a long update last night but it just got too late. I'll do that later but for now just wanted to tell you that both the OT and PT said Bella had her best day of therapy with them yesterday! Super Bella is trusting her cape again! 

11:23 PM:
It has gotten harder and harder to write updates now that we’re attempting to lead semi-normal lives. My last update mentioned the awful screaming in the night. We started giving Bella both a Melatonin and a Benadryl at night, turned off her monitor and told her she was only allowed to text us if she needed to go to the restroom. That worked well for several nights (until last night). Bella did not cry out but she did text us a few times during the night to have her legs moved. The good thing is that she was coherent enough to text but she is not supposed to ask for help moving her legs or doing things that she should be able to do on her own (therapist’s orders). Even though Brian is the one who gets up to help her (so he can carry her to the bathroom if that is what is needed), we both still wind up feeling like we’ve been run over by a train when 5:45 AM rolls around and it’s time to face the day.

Bella has maintained a positive attitude for a full week now. It’s been so wonderful to see her cheerful! She appears much stronger and we can tell she is really trying. I’m still frustrated by the very slow progress. She is however getting ever so slightly better. Her OT commented today on the improvement since yesterday. She had Bella picking up colored cotton balls with a clothespin-like clip and dropping them in cups. Yesterday Bella was not able to grip the clothespin so it had to be fastened to her hand. Today she held it and squeezed it on her own. At therapy, they are now putting Bella in this new supported walker (can’t remember what they call it). It fastens underneath her to form a seat and has a cushioned surface for her upper body to rest on. She feels a little safer in it so it is helping to build her confidence in her body. She took some steps in that yesterday and today.

I was able to get Bella into see her Austin neurologist today. It took some coaxing and pleading to have them agree to see her sooner than October but I was disappointed in the visit. This doctor just didn't seem confident enough in the answers he gave to my questions. His office of 8 or so neurologists only has about 4 GBS child cases a year. And yet, he felt like he had enough experience to say that most kids with GBS get better in weeks. Doc said we could perform another spinal tap and EMG on Bella (while sedated – just to make sure nothing was missed) or we could wait and see if she keeps improving. Of course, I want to wait and see rather than make her suffer through those tests. While I do not look forward to the trip, I think we’re going to have to try to get in to see our Dallas neurologist again. I just feel much better about her experience with GBS and her ability to provide a good treatment plan for Bella. I’ll call her office tomorrow and see when they can get us in.
Still working on the home therapy and the counselor. I've been given some names of 1st year physical therapy students who are looking to earn some extra cash. We’re hoping to get one here daily for a few hours.

Tonight Bella stood by herself for about 30 seconds while brushing her teeth! We've been working on standing to brush but usually have to support a good portion of her weight. It’s late again and I think I’ve forgotten half of what I wanted to say. Bella is making improvements, very small improvements but improvements none the less. The self-supported stand tonight was a huge improvement! Praying we start seeing huge leaps in progress.

11:57 PM:
Falling asleep and I remembered one of the things I forgot. I was nervous today that the neurologist would not be satisfied with Bella's slow recovery and would stick her back in the hospital. I prayed and asked for some good news. HE answered. Thank you God!

June 14, 2013 - Day 69

June 14, 2013 - Day 69

The good news is that Bella has been mostly happy during the last three days and has had a good attitude. While she's not made any major advances in her ability to walk, the upbeat demeanor makes her appear stronger.
The bad news is that the last several nights have been awful! Last night was by far the worst night that I can recall since she got sick (though there have been several bad nights). About 5 minutes after Brian and I fell asleep, Bella started screaming. Brian went in to see what she needed. She was crying incoherently so he sent me in. She screamed at me in this high-pitched, whiny, worse than fingernails on a chalkboard voice. She refused to tell me what she needed but just kept screaming for Daddy. I tried everything I could think of to calm and quiet her but she just kept screaming for Daddy. After several minutes, I gave up and sent Brian back in. He was able to calm her a little finally. She woke again a while later - screaming again. This time Brian went to sleep with her hoping to keep her quiet that way. She moaned and cried all night. And she kept screaming out that her back was hurting and was twisted. She was laying perfectly straight. It was just awful! I read a blog of a 30 year old man who had GBS. He spoke of the incredible pain he felt every night shooting down from his hips through his legs. His doctors told him that it was all just the brain sending crazy signals so this man chose not to take the medicine the doctor prescribed to aide in this (some psych med, I'm sure). It's great that a grown man can reason his way out of that but what do you do with a 10 year old child? We decided tonight we would put her ipod near her head and told her she can text us if she needs to go to the restroom and is coherent enough to text. Otherwise, we will try to drown her out with white noise in our bedroom - and will pray that she is able to sleep peacefully.

June 11, 2013 - Day 66

June 11, 2013 - Day 66

I've been doing a lot of GBS reading the last few days. There's a forum at gbs-cidp.org and I've been trying to find some relevant information. I'll post my own questions there soon and see what kind of responses I get. 
Brian and I have been just completely at a loss for how to help Bella. She's had so much regression and such a lack of motivation. It's really hard to get inside the mind of a 10 year old who is facing such struggles. The last few days were not great. There were moments of good. Like Monday afternoon when Bella sat on the couch and sang loudly while trying to move her body as much as possible. I watched Brody watch her and felt such joy. He was looking at her with such love and fascination. I imagine that he was thinking that this was the Bella he knows and loves. The big sister who played school with him ALL the time and helped him to run restaurants in our Mabank kitchen (when Mom just wanted to get dinner on the table!). There are some good moments but the last few days were not great. Until tonight. Brian and I were both out of the house at work today so Brian's mom cared for Bella. She didn't have a great day. She cried with Gammer and missed us a lot but perhaps it was a good thing. From the time I got home at 7, she had so much energy and perkiness. She was strong and motivated. She took a bath and was moving and kicking her legs in the tub. She had several really good stands. We feel hopeful right now but know that the reality is there is a very long road ahead.
I spoke with a woman yesterday whose son battled GBS when he was 5. He had a very severe case - much worse than Bella's. He is now 8 and she said he's about 99% back to normal. Her (admittedly non-medical) opinion when I explained Bella's case was that Bella needed more time in rehab. She even encouraged me to get her readmitted. I'm not ready to go that far but I am ready to start paying out of pocket for in-home therapy. Insurance will only pay for outpatient at a facility or in-home but not both at the same time. Bella needs both.
After all the reading I've done in the last 48 hours, I'm coming to realize that there does not appear to be a textbook GBS recovery. The degree of weakness and time to return to normal vary widely from person to person. One thing I read today stuck with me. A poster said that his PT had taught him to crawl before you walk. It makes perfect sense - that's what babies do - but we've been pushing Bella to walk with her walker. Maybe she needs to start on the floor and learn how to crawl again - where there is no fear of falling - before we push her to take steps.
I'm still trying to locate a counselor. I've been pursuing recommendations but have not yet connected with one who works with Bella's age and is available right now. I have a few more leads to reach out to tomorrow.
Side note about my work: last week I had a meeting with my company's CEO. It was the first time in 4 years that I've had a meeting with him. He very sincerely asked about Bella and seemed to genuinely want to know details. Then he asked if there was anything the company could do to accommodate my situation. When I told him I didn't know what to ask for, he offered me a 4 day work week. I was about to start taking a vacation day every week to allow me to work with Bella one day so this was quite a revelation. I started this week working 4 10 hour days. I am grateful for this new schedule, though the long days are hard. 

June 9, 2013 - Tears

June 9, 2013 - Day 64

Remember that feeling when you are discharged from the hospital with your first baby (those of you who are parents) and you look incredulously at the staff and think "you're really trusting me to take this tiny human home and not kill her?"?
Though you're scared and sometimes feel inadequate, there's a wealth of resources to help you through it. You can call the doctor at 3 in the morning (done that many times). You can call your mom, sister, best friend, aunt, neighbor, etc. about just about any baby question and they can help you. You can look on the Internet, read a book, watch a show. There are a million ways to find the answer to whatever problem you have with your baby.
When Dell determined that Bella was well enough to go home, we had mixed feelings. We were overjoyed that we would all be together sleeping under the same roof again but we were also scared to death that Bella would relapse again. We were sent home with the promise of outpatient rehab. And we've watched in horror as Bella has gotten weaker and weaker only to find out that we are enabling Bella by not pushing her hard enough. We didn't know we had to be parent, therapist, drill sergeant, coach, miracle-worker, masseuse, healer, and on and on. Even with all of that, she is not getting better. There are no books or resources that I have found to guide us through this. There are so many tears in our house - not just Bella's. This is so hard and I feel so lost about where to turn for help. Feel like I'm spinning in circles trying to trace down every lead and then...waiting...impatiently for each lead to respond. In the meantime, I feel like we are not doing enough for Bella and she is sinking further into despair and atrophy. Our hearts ache. 

June 6, 2013 - Day 61

June 6, 2013 - Day 61

Life is really hard right now. It pretty much sucks most of the time. My super demanding, incredibly stressful job has become my refuge. I cannot even begin to express how sad that is.
I have occasional moments of joy - When Faith and I can have a nice chat; when I read Brody his bedtime story; when I hear that Bella has overcome a fear or is having a really good day. Mostly we are just limping through the days and when I pause to reflect, I pray that this experience does not have any lasting negative effect on my kids. I also pray that it ends soon.
The last two days have not been good for Bella. She did not have formal therapy on Wednesday so Brian took her to Lockhart with him (& Faith & Brody) for part of the day. He hoped to get her out & moving but she would not work. She did the exercises on her calendar but not well.
Thursday Bella did have therapy but she did not do well. At home in the evening, she was resistant to working and very emotional. I had to force her to eat. Faith tried very hard to help Bella with stretches but Bella just whined that she wanted daddy.
I have been playing phone tag with the social worker at dell. I'm trying to get referrals & recommendations for in-home therapy to go along with the OP therapy Bella is getting. If we have to pay out of pocket, we will but I'm hoping insurance will cover it. I am also trying to find out if insurance will cover massage therapy. Bella desperately needs some massages. I've been working on her hips the last 4 nights. I'm not usually good at noticing where a muscle is tight, but oh my goodness are Bella's glutes and hips TIGHT! I'll get her in somewhere very soon - with or without insurance approval/coverage. I'm just concerned about finding a person/place that can dell appropriately with a child with nerve issues.
I've gotten a referral for a counselor so I'll be calling her tomorrow.
I'm falling asleep now so I'll sign off. Praying tomorrow is a better day and that we can motivate Bella through the weekend. 

June 4, 2013 - Day 59

June 4, 2013 - Day 59

I share the days when we cry and the days when we sing. Today we sang! Bella had an awesome day today! I missed all but the very end of it because I was at the office but I got such great reports. Bella had a great attitude all day and worked very hard. She only had OT and she did start slowly but her therapist worked with her and then reported that Bella had her best session yet. 
Praying that she stays strong, happy, and motivated tomorrow!

June 3, 2013 - Day 58

June 3, 2013 - Day 58

Today was not a good day. Brian and I both had to work today and his mom was on tap to watch the kids (mostly Bella). Bella does not do well in the mornings but her therapies started at 10 this morning and she had to get up and moving quickly. Brian's mom took Bella to rehab. She did well for her OT but then wimped out for PT. 
The afternoon didn't go as planned. Motivation and encouragement were not as prevalent as they needed to be. Bella did not get her work in this afternoon as she needed so when Brian stopped by the house at around 4, he helped her to the floor to allow Faith to work with her on some stretching/Yoga poses. However, Bella decided not to work with Faith. She also wouldn't allow me to help her get up so she stayed on the living room floor for over 4 hours until Brian got home again. I hesitated to share this part because it's not pretty but Bella being on the floor for 4 overs wasn't the worst part (and I'm documenting this for future reference). Once Brian did get home, he and I worked together on being tough with Bella. I had tried for hours to convince Bella to allow me to help her up so rather than Brian lifting her up as he's done in the last several days, he spent the next hour or so encouraging her to work her way up herself. It was one of the more heart-wrenching things we've been through (though still nowhere near as bad as that EMG). Bella worked her way over to the couch and had to put both hands on the couch. Then Brian helped her into a kneeling position and I helped her into an upright kneeling position and tried to push her to pull her core in and be strong. It was not easy. Once we got Bella calmed down from that, Brian had Bella take about 15 (very assisted) steps and then eventually helped her into bed. It was a very trying evening.
I feel bad for the friend who texted me today and got a very long and desperate response because I was at my wits' end. I really just wish Bella wanted to get better as much as Brian and I want it. I simply do not comprehend the unwillingness to try. I get the fear but not the refusal to overcome it...not when overcoming her fear is going to eventually result in a return to normalcy.
God help us! We really need it!

June 2, 2013 - Iron Man 3

June 2, 2013 - Day 57

We finally got to see Iron Man 3 today! Brody has wanted to see it for so long. Even Bella went with us today. She did really well. We put ear plugs in since she is still very sensitive to long noises. She began to get uncomfortable in her wheelchair about halfway through the movie so Brian moved her to the theater seat. And then she fell asleep! Poor girl gets tired very easily! When we got back home, she slept for 2 1/2 hours.
We had some trouble motivating her to work once she woke up. She has trouble getting her head in the right place before about 7 pm. The last two nights, she has ended with a good attitude and some strong effort but we need her to work all day long in order to get stronger faster.
Her schedule is written for tomorrow. Hopefully between Faith & Brian's mom, Bella will get solid attention and encouragement all day.

May 31, 2013 - Perspective

May 31, 2013 - Day 55

Perspective. One thing I have gained over the last 2 months is perspective. I used to say "Man, the worst thing is..." or "It doesn't get much worse than...". I have learned not to say that. Yes, it can get worse but I pray it won't

Got some good news today. My knee is very badly bruised and I have only a minor strain. Could be much worse. 1-2 weeks in the monster brace and I should be good as new.
We allowed Faith and Brody to skip school today (their last day of school!). We've been such bad school parents since we made this move but it is just really hard to coordinate getting them to and from school sometimes. Today was one of those days. Faith did an amazing job with Bella, though. She spent a long time with Bella on music therapy. They practiced singing (Faith's absolute favorite thing to do) and Faith helped to cheer Bella up. She (Faith) really made us proud today.

Brian took Bella to see the PMnR (physical movement & rehab) doctor that we had seen at Dell and a new pediatric neurologist this afternoon. I had told the PMNR doc that Bella was weaker and I was very concerned. I had been telling her this over the last 10 days or so and she examined Bella first last Friday (post swim, which caused the ban from the pool) and then again today - this time with the neurologist. Both doctors agree that she is weaker but believe it is due to muscle atrophy and not further complications with GBS (though of course ALL of this is a result of the GBS). The neuro doc said that it typically takes kids Bella's age weeks to recover. Bella is about to hit the 2 month mark since her diagnosis. I'm a little skeptical about the suggestion that recovery happens in weeks. The Dallas neurologist set our expectations as many months to a year. Perhaps that is the difference in the number of GBS patients that the 2 different doctors have seen? Or perhaps the difference lies in the severity of the GBS attack? I really don't know. We were relieved that neither doctor felt that Bella needed to be admitted again.
Brian also spoke with one of Bella's favorite outpatient PTs (Joy) for a long time this morning. Joy said that Brian and I have to be tough with Bella. We cannot be parents, we have to be coaches. If she was able to do something in the hospital when she was released, she should be able to do it now. In the hospital, she could walk 67 feet with her walker and no assistance. Now, she needs about 50% assistance to transfer from chair to wheelchair. We have to make her get herself dressed, reach for things that are a little out of reach, etc. It's hard and it takes time but we will do it.
On the way home from the doctor, Brian and Bella decided that Bella needed to show 3% improvement every day and that would make her completely better by July 4th. We are getting a calendar and setting some specific goals and rewards. The therapist said that we have to be very strict with the rewards. Even if Bella works really hard but doesn't do what was set as the goal, she doesn't get the reward. We are also discussing booking a beach trip to Port A (can't go too far this summer) for mid-July (hopefully refundable). If Bella is not out of the wheelchair (or some other goal), we don't go. We'll see. And we're setting up a daily routine that will include very detailed notes about all that Bella needs to do. This all will take work from all of us but hopefully the end result will be a 100% healthy Bella!

May 30, 2013 - Not the Best Birthday Ever

May 30, 2013 - Day 54

Super Bella conquered her fear of getting on the floor and rode on the scooter board picking up magnets! Major workout! 

Thank you all for the birthday wishes! You really know how to make a girl feel loved.
My day started out pretty badly because Bella was really weak this morning but it ended on a higher note. Bella rebounded for therapy and worked so hard. I survived my first MRI (which was really not bad at all. I even took a very short nap in there). And I got to eat some excellent food at Pappadeaux. 
Now it's back to work tomorrow -amongst the boxes.

May 27, 2013 - Moving Day Eve

May 27, 2013 - Day 51

Another MONTH has almost come and gone. Can't imagine what else could go wrong. I might feel defeated and I might hang my head. I might be barely breathing but I'm not dead. Tomorrow's another day and I'm thirsty anyway, so bring on the rain....
Well, not tomorrow because it's moving day. I hate moving with an intense passion. HATE IT! I mean, I lived in the same house from the age of 4 until I graduated high school - and my parents stayed there until I was 23. I like stability. However, being the wife of a coach, moving comes with the territory. As much as I dislike moving and as much as I will miss this house and community, I do not mind so much the packing and disassembling this time. At least I have control over this. There's a problem to be solved and by working hard (and getting help) I can fix it. With Bella, I have no control and that kills me!

May 26, 2013 - Day 50

May 26, 2013 - Day 50

I haven't posted about Bella in a few days because there hasn't really been any progress. I got scared - very, very scared Thursday and Friday. It seemed that Bella had started getting weaker again. Her rehab doctor examined her Friday and said (1) Bella is not to go in the pool for 2 weeks because it completely zaps her and (2) she needs more motivation at home. I spoke with the GBS survivor/advocate and she has the same theory about the motivation. Bella is currently a full-time job. She needs more than just someone to help her to the restroom and get her food. She needs someone to sit her up out of the recliner, out of her wheelchair and play a game, do a craft, etc. Basically she needs all day OT and PT in order to continue to progress. The problem is that we all work and while I can work from home and meet her basic needs, I cannot work and provide the constant attention and motivation that is essential.
I'm extremely relieved that the doctor's diagnosis does not involve another hospital stay but also left uncertain of how to fix it. We're going to start with retired family members and see if we can account for most of the week that way. Then we may have to hire someone to come in the other weekdays. I hope we can work it out and that Bella starts to show improvements and gets back to the strength she had when she left the hospital.
Brian, Faith and I traveled to Mabank in the nasty storms Friday night to spend a hard 3 days packing. Tuesday we will move to a new rental in Kyle (still own our Georgetown house). My parents are taking care of Bella and Brody all weekend. My dad seems to have found a new calling as a therapist. He pushes Bella to put on her own shoes and to get up and walk with her walker. He coaches her about how to stand and move and try harder and doesn't give in when she cries (I'm a sucker for the tears). If only his job wasn't so demanding, he could be the answer to our problems!
Continued prayers are needed and if you have a suggestion/idea on how to motivate Bella or who to call for outside help, I'll gladly listen. 

Thanks Sharon for the awesome shirt! She loves it!!!

May 24, 2013 - Day 48

May 24, 2013 - Day 48

I have a slideshow set up on my work computer - mostly older pics cuz I don't update them very often. This one popped up from Halloween 2011. I look at her strong legs & ache for a return to this 

May 22, 2013 - Day 46

May 22, 2013 - Day 46

Friends, please pray a little extra (more than you already are) for Bella. We are so scared. She just doesn't seem to be getting better anymore. Every complaint is so scary and she's choked on water several times today. I don't think we can take another hospital visit. I really think I will break if we have to go back. I don't know what else they could possibly do to treat her! We are praying that her symptoms are caused by allergies or some other normal illness and not because of the GBS.
We're trying to get in with a neurologist in Austin.
Oh and we have figured out that Bella most likely contracted this disease from the flu vaccine. Be careful what you let them shoot you up with. I can guarantee you that no one in my family will ever get the flu vaccine again. 

May 21, 2013 - Taylor Swift

May 21, 2013 (part 2)

Don't you love posting things only to yourself? Ugh! Posted this pic last night at 6 saying Bella wasn't feeling well but was determined to make it through the concert and asking for prayers to make it through. 
Well, that didn't go as planned. We spent half the show lying in the first aid room while Faith enjoyed the concert alone. Praying she gets better and we have the chance to find Taylor in some other city (though none are as good as Austin)

May 21, 2013 - Prayers for Oklahoma

May 21, 2013 - Day 45

It's ironic how God puts things in perspective for you when you really need it. I was thinking yesterday how hard my life is right now and how I long for the "easy" days we had before Bella got sick. Seeing such devastation again, this time with so many lives lost in Moore, I'm grateful (again) for my burdens. I'm so saddened by this and praying for all those affected.

May 19, 2013 - Day 43

May 19, 2013 - Day 43

Today was a busy but good day. We had a little birthday party for Brody and got the chance to see many of our Eustace and Mabank friends. 
Bella really enjoyed herself (as we all did). Having so many friends around her really distracted from her pain. 
It's just a shame that she had to make the trip back to Austin- traveling is not easy for her. Bella was feeling very sick tonight. Brian is going to ask the doctor about all the nausea tomorrow. 
Tomorrow she will have her outpatient evaluations with PT and OT.

May 18, 2013 - I am Titanium

May 18, 2013 - Day 42

"You shoot me down but I get up. I'm bullet-proof, nothin to lose. Fire away. Fire away. Ricochet. Take your aim. Fire away. Fire away. Shoot me down but I won't fall. I am titanium." Good song and appropriate lyrics.
I don't know why I-35 can't be nice to us when we are traveling with a sick Bella. There was some kind of a major accident in Troy so our trip from Leander to Mabank took 4 1/2 hours. Ugh! Gonna have to figure out how to leave Bella back in Austin every other time we make this trek!
Bella handled the drive okay but she is nauseous most of the time so a long car ride wasn't the best thing for her. She shed plenty of tears today too. Tears for her old life. Tears because she couldn't run upstairs along with Brody, Faith, and Faith's friend Reece. tears for her old school and friends. Today she mentioned going back to school - her old school again. Dealing with this devastating illness and being a coach's daughter and having to make a move at the same time! Poor baby!
I will definitely be asking her doctors about group therapy and/or some type of counseling. We bought a baby monitor and demonstrated to Bella how easy it is to hear her. She went to sleep easily so hopefully she'll sleep well knowing that we can hear her if she needs us.

May 17, 2013 - First Day at Home

May 17, 2013 - Day 41

Being at home after so many weeks in the hospital is not easy for Bella. She didn't feel well most of the day. She rebounded a little this afternoon and had a couple of hours of perkiness, but tonight was not good. She cried uncontrollably for over an hour. She is so scared! She's scared that she will get sick again. She's scared that she'll need us in the middle of the night and we won't hear her (she's sleeping with Faith but Faith got pretty angry when she was woken up in the middle of the night last night). She's scared that she'll get hurt in the night and no one will help her. I feel so helpless. I've tried lying with her but I can't calm the tears. I've tried rocking her but she wasn't comfortable. I didn't know what else to do so I left her alone and Brian and I checked on her every 5 minutes. We think she finally fell asleep. I can only imagine how strong her fears are. I fear the same things and I'm not the one who suffered through the treatments and lost my ability to walk. Oh how my heart aches for her!

We did not have any therapy today. Bella goes back Monday morning for Outpatient evaluations. She'll have to get used to new therapists again. That means for the first day, they won't get as much out of her because she will be reserved. I believe she'll have an hour of PT 4 times a week and an hour of OT 2 times a week. They'll confirm that after the evaluations Monday.

Tomorrow we will all travel back to Mabank for the night. I'm looking forward to going home. We left in such a hurry and I fully expected to be back last weekend when I got sick. I don't have the right clothes for the nearly 100 degree temps Austin is having. I hope Bella is able to make the trip without fear or pain.
Please pray for her fears to subside and for this disease to be gone for good! 

Bella was on the Fox 7 News

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!