Day 24

Yesterday (day 24) was another AMAZING day! Kylee slept all night and woke up refreshed and ready for another day of AIMS testing and school. I didn't get a single phone call from the nurses office. I did get an email from the nurse, but that was only to inform me that Kylee had lost a tooth and she wanted me to know about it. Haha! Silly girl. She never tells me when she has a loose tooth anymore because she's afraid David will find out and pull it. She's funny!

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So she lasted all day at school and then we went to her first physical therapy appointment at 4pm. It was a good visit and Kylee had fun doing all the stretches and exercises. The physical therapist is great. He worked with pediatric therapy for the first 7 years of his career. The youngest Guillain-Barre patient he had ever worked with was 11, so Kylee is definitely the youngest he has seen. But he also said that Kylee is the "healthiest" GBS patient he has seen, meaning that she is in the best condition he has seen at this stage of GBS. He was also very blunt with me and said that it is still very early in her diagnosis. He has seen patients dramatically digress within the first 30-90 days of the diagnosis. So he warned me that Kylee is definitely not out of the danger zone yet. I understand this but I also know that her neurologist isn't too concerned. That doesn't mean that Kylee won't digress, but we are very hopeful that she won't. We will still keep a very close eye on her and take every little sign and change she makes seriously, but she is doing so well right now and we are rejoicing in her progress and focusing on moving in this direction.

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The physical therapist showed me some stretches I can do on Kylee at home and that if we keep that up, he should only need to see her once a week. I'm glad we will see him at least once a week because he will be able to see the signs and symptoms if she does start to digress. And he can work with her to help her progress and get stronger. I feel comfortable with him and Kylee really likes him and has fun.

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After physical therapy, I took Kylee to her first softball practice in 3 weeks! Her team was so sweet. They all signed a softball and wrote her letters. They all hugged her and had a team cheer for her. It brought tears to my eyes. Kylee is truly surrounded by so many amazing people! It made her feel special. She did great at practice, but her strength is definitely lacking. She couldn't throw the ball nearly as far as she used to and she couldn't swing the bat as fast or hit the ball as hard as she used to. It's going to take time for sure! But I'm just so glad she is getting back to her normal routine and activities and feeling like an active kid again. It makes me so happy and I know it makes her happy too.

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No pain whatsoever yesterday! Not even a little tiny episode of pain. It was an amazing and very productive day. She slept all night without a peep as well and woke up refreshed and went off to school for another day of AIMS testing. We have an appointment with the pediatrician today so they can go over and start to treat her H. Pylori virus and Epstein-Barr. So we'll see how that goes and I'm very interested in hearing what the doctor has to say about those.

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So thankful for another great day and for the progress our strong girl is making! Love her so much!

Day 23

Today couldn't have gone better! We made a lot of ground today. Like I said before, Kylee had a great night. She woke up and went off to school on time with her car pool ride. It was her first day of AIMS testing so I was so thankful she had a good night's rest. I didn't get a call from the school nurse all day! I had to go take her out of school at 1pm because she had a doctor appointment with the neurologist at 1:30 today. When I got to the school, the nurse told me that Kylee came in the office for drops and ice because her stomach hurt a little. I'm so proud of her for sticking it out and going back to class. That is huge for her!

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While at the neurologist, we learned some interesting news. Back on April 6th, when Kylee had her MRI, they drew blood and ran some tests as well. The results came in and we learned that Kylee tested positive for H. Pylori and Epstein-Barr. These two combined are possibly what triggered the Guillain-Barre. Just crazy that all of this is going on in Kylee's tiny little 7 year old body! H. Pylori is an infection in her stomach....which has been causing her diaherra and vomiting. Considering she has had diaherra off and on for the past year, it makes me wonder how long her body has been infected with this. Epstein-Barr is a form of Mono. After doing research on it, it's very common and 95% of people have it and don't even know it. The symptoms are often non-existent or if there are symptoms, they come in the form of cold-like symptoms or flu-like sypmtoms. So often a cold will be treated but it's actually Epstein-Barr. Anyhow, these two combined seemed to have triggered some kind of an attack on her nervous system, which caused the Guillain-Barre. This is just an assumption, not fact...but it's just nice to finally have some answers as to why this all could have started.

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Kylee will start her neuro-physical therapy tomorrow. She is actually really excited about that. Her neurologist said it's time to start getting her back in dance and softball as well. So she went to dance today and will go to softball practice tomorrow! We also have to go back to the pediatrician to have them send us in a direction to start treating the H. Pylori...probably with another antibiodic or what not. I hate shoving all this medicine down her stomach, but if it works and gets her healthy again, I guess it's what we have to do.

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Kylee has been great all day. She had one little spat of a painful headache around 3pm that lasted 15 minutes or so, but that was it. It's 7:45pm right now and she is still going strong! I predict another great night and good day tomorrow. I feel great and things seem to be finally heading in the right direction!

Day 22

Kylee had kind of a rough night. It wasn't too bad, but she had a few battles of pain that didn't last long, but still kept her up for part of the night. David has Mondays off so he was amazing enough to let me sleep in my bed while he went and catered to her. If someone is in the bed with her, she doesn't complain of the pain as long. And she is usually more quiet with her cries. But anyhow, she had a semi-rocky night but woke up feeling good and ready to go to school. Mondays are my favorite day of the week because it's the one weekday that David has off and that we can do things together. So we planned to go into town and do a few things. We wanted to go as early as possible because if and when we get phone calls from the school for Kylee, it's usually around 10am. So we got ready and were on the road just before 9am. By the time we drove 15 miles, the school called. The most frustrating part of Kylee's pain while at school is that it does go away eventually (after 15-30 minutes). But trying to talk her out of it and to not focus on the pain is impossible when all she wants to do is go home and rest with me. But after 15 minutes of being home, she is absolutely fine! So I hate taking her out of school. But of course she wouldn't calm down this day so we decided to take her out of school for the duration of our errands and then take her back. And of course, after about 15 minutes in the car with us, she stopped crying and her pain had subsided. O'well....she needs extra love and care during this time and I will do all I can to help her heal faster. And if mentally healing her helps, I will do it!

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We took her back to school about 2 1/2 hours after we initially took her out and she was absolutely fine for the rest of the day! She went to bed and slept all night without one peep. She woke up feeling great and just got picked up to go to school and take her AIMS test! Testing is all this week and I told Kylee that she HAS to get through her testing in the mornings. They are over by about 9am so I'm confident she won't be distracted by her pain. If I do get a call from the nurse, I'm not going to pick her up. I refuse! The gabapentin works, but sometimes has a minor lapse of control...which causes her pain to come to the surface. But it always goes away within 15 minutes or so. But when the pain is there momentarily, she just sits in her chair at class and thinks about it and makes it worse than it is. When she is at home, the pain might come for about a minute but then we distract her mind and keep her busy so that she doesn't dwell on the pain. So it's hard when she's at school because she has nothing to do but think and dwell on the pain.

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Her pain is always either in her back, legs, arms, stomach or head. But the past few days she has been complaining of pain in other areas such as her jaw and her ribcage area. So there doesn't seem to be any limits to where her pain can be. She has an appointment with the neurologist today and I have written down a list of questions for her. Hope to get a few more answers and to just keep moving on and helping Kylee's body heal fast! Kylee was supposed to start physical therapy yesterday but the physical therapist we met with (who is a friend of ours) referred us to a neurological physical therapist who specializes with strengthening and healing the nerves and muscles. I didn't realize there was such a person that does that. So we scheduled an appointment with that doctor for tomorrow (Wednesday). We are anxious to see what they will do to help her.

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So for now, we consider Monday a good day! And Monday night was perfect! Hoping for a solid day today as well.

Day 21

First I need to mention yesterday, day 20....the good day I was hoping for after a horrible previous day! This was the day of Natalie's baby shower...a day that Kylee has been looking forward to for weeks. She has seen all the preparations I have been putting into it for the past couple months and she has known that she was going to get to come and be a part of it. So I know her heart would have been crushed if she woke up still sick and in pain like she was the previous day. But the clouds opened up on her once again and she felt great that morning. She slept good and didn't throw up again. The on-call doctor I spoke to was right...that her vomiting was just a result of her system getting rid of the left-over gunk from all her anti-viral medications she had been on for 10 days. I'm so thankful that it wasn't a sign of body paralysis.

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So the morning came and she woke up beaming and excited for a great day with her cousin and family. We prepared all the last minute details of the shower and headed out for the hour long drive to the West Valley for Aunt Nanny's shower! Daddy and Carter stayed home and had a fun bonding day together. The shower was a huge success, all while Kylee felt great and was playing and enjoying herself to the fullest! It was so great to see her so happy and energetic again. When she has her good days, it's as if the disease completely disappears and she is her happy normal self again (other than her facial paralysis and body stiffness). But she literally seems perfect to me on her good days.

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We spent a solid 5 hours at the shower and cleaned up and drove home. She slept the entire way home. She played her little heart out and crashed big time. So glad she had such a great time. It was ward temple night that night and David and I really wanted to go. But we are so nervous to leave her without one of us with being there for her if her nerves act up and cause her to have immense pain. So we decided that it's still too early on in her diagnosis and that her body is still too frail and inconsistent for us to leave her just yet. So we stayed home, sad to miss being at the temple with our ward family, but I'm so thankful we stayed home because around 7pm Kylee's nerve pain acted up. She wasn't due for medicine for another 4 hours so we spent a good 3 hours (off and on) massaging, icing, cuddling, and doing all we could to keep her mind busy so that she wouldn't think about the pain as much. She eventually fell asleep, only for me to wake her back up at 11 so she could have her last dose of pain meds for the day.....and then she fell right back to sleep and rested peacefully all night without a peep of pain.

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Sunday morning came (this morning, day 21) and she woke up happy and pain free. She was so excited to wear her Easter dress again. She wore it to church on Easter Sunday but we only stayed for sacrament and she didn't get to wear it for very long. So she was excited to get to wear it for all of church this time and show her friends. The first hour of church was good...she was great! The next half hour was good too as she went to her primary class. But halfway through it, I got called out of my class to go help her because she was crying and upset with jaw pain. Jaw pain is new! She's never felt pain there before. So we rubbed and massaged it as best we could. 10 minutes went by and we kept trying to help the pain go away. But nothing was working. We walked around church for a while hoping to give it some time....but still no relief. She was in tears so I decided to take her home where we could ice it and she could rest. After about 20 minutes at home, the pain finally subsided and she was able to relax again.

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The pain stayed away the rest of the day until about 8:30pm. Her upper thigh on her right leg began to hurt. This was a new location as well. Her usual pain spots are her back, lower legs, stomach, head, neck and sometimes her arms. But her jaw and now her upper thigh/lower buttox was definitely new to her. So we iced and massaged, all while reading our nightly scriptures. The pain went away after about 15 minutes. Didn't last long, thankfully. She is now sleeping but I will be waking her up in 15 minutes to take her last dose of medicine. This medicine is so strange. She can only have 3 doses a day and they have to be 8 hours apart. So she has her first dose at 7am, 2nd dose at 3pm, and her last dose can't be until 11pm. This forces me to stay up late (I'm usually in bed by 10), and it interrupts Kylee's peaceful sleep. I hate waking her up when she is finally resting pain free and peacefully. But most nights she falls right back to sleep and sleeps all night long without a peep. In the mornings she says that she doesn't even remember taking her night dose of medicine. I'm glad! So it seems to be working out. I just don't know how long this will last. Will I have to keep waking her up every night like this for months to come? Oh how I hope this goes away sooner than that!!

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So today was an ok day. She was good for most of it, but did have some downer moments of pain. But I'd still consider this a pretty good day. I hope the night is good and that she can make it through most or all of school tomorrow. Good night!

Day 19...Good streak ended today

Good and bad days will come and go. I sure hope today goes away and that tomorrow is a better day. Yesterday and the day before that were good days...no...AMAZING days! She was good as gold and never complained of one ounce of pain or irritation whatsoever. But then the night came and she was having leg pain and neck pain around 7pm. She couldn't take her pain meds until 11pm so I knew it was going to be a long night. She finally fell asleep around 9pm and seemed to be peaceful. Around 10:45pm I heard her crying in pain again. So I gave her some medicine 15 minutes early and gave her some massages on the sore areas and prayed by her bedside. Some days and nights I feel so incredibly sad and angry that this is happening to my girl. But then I stop that thought instantly knowing that we were given this trial for a reason and that we (especially Kylee) are strong enough to get through this and that IT WILL PASS! I think of others who have it so much worse than me. Who have children with terminal illnesses, or who have even lost children. So I have to keep reminding myself that everything will be ok and to REJOICE on the good days, and pray a little harder on the bad days.

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So the night was horrible and Kylee and I hardly slept at all. But around 4am she finally got comfortable and seemed to sleep peacefully for about 2 1/2 hours. She woke up on her own around 6:30am and got up to start getting ready for school. I asked her if she was ok and she said she felt fine. So we proceeded on with our morning, ate breakfast, got dressed, etc...and I took her to school with 15 minutes to spare. I thought that the horrible night was just a fluke and that she was going to have another good day. Well at 9:30am, 2 hours after I dropped her off, the nurse called and said that Kylee was in tears and pain complaining of stomach pains. I could hear her cries in the background. I told the nurse what I tell her everytime this happens...to give her an icepack and have her rest for a few minutes until she calms down...and then send her back to class. This works most of the time. Well it didn't work today. I got a call 10 minutes later and she was now crying even harder. So I drove to the school to talk to her and hopefully calm her down and send her back to class. She can't miss anymore school so I try everything in my power to keep her there as long as I can. She was hysterical and kept insisting that her stomach really hurt. So I told her to go to class, get her homework for the day, and I will check her out. When she came back, she was crying even harder and holding her head. The pain was now in her stomach and her head. Ugh...saddest thing ever! She wasn't due for more medicine for another 5 hours!!!

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When we got home I sent her to my room where it's nice and dark and had her close her eyes and take a nice long nap. She didn't sleep much last night so I know she was tired and that her body was probably acting out as a result of not getting the rest it needed. She slept for a solid hour and a half and woke up happy and pain free. I had to run a few errands and today was the last day I could get these errands done, so we went off to Costco and Target. The drive to Costco was about 25 minutes and when we got out of the car, she complained of tingling in her legs. Whenever she complains of tingling, it's very alarming because that is an early sign that the GBS could be taking her legs...or in other words....paralyzing them. But luckily the tingling went away about 5 minutes later. But still, this will be noted and mentioned at our neurology appointment next week for sure!

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Costco was good...no pain or complaints. Then we went to Target to get a few things as well. No pain or complaints. As we were driving home from Target, she started complaining of stomach pain again. We were about 5 minutes from home at that point. We got home, she laid down, and I put an icepack on her forehead and her stomach. I really don't know if the icepacks do anything physically, but they sure do help my baby girl mentally. She fell asleep again and rested peacefully for another hour and a half. After she woke up, she seemed good again and pain free. I had a fun girl's night planned that night so I laid Carter down for a nap, made sure Kylee was good, and jumped in the shower. When I got out of the shower, Kylee was complaining of stomach pain and a headache again. It was really hard to get ready and cook dinner for everyone when I had to stop and give Kylee head massages and cuddles every 5 minutes. Luckily David was on his way home from work so I could get some help!

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After about an hour, Kylee started to fall back asleep. She was definitely a tired little girl! I felt better knowing she was going to be sleeping peacefully when I left for my girls night. David was home and ready to take on the "nursing" duties. I felt a little guilty leaving but I was anxious to get out and recharge my batteries with my friends. We were going to Oregano's to eat dinner and afterwards we were going to go to a comedy club. About halfway through dinner, I got a feeling that I should not go to the comedy club and just go home. Maybe it was a feeling or the fact that Kylee called me 3 different times asking me when I was going to be home! Throughout this entire experience, Kylee and I have been glued to each other...for obvious reasons. She needs me just as much as I need her. It was hard for me to leave tonight when I haven't left her side yet...except for when she goes to school for a few hours each day. But I went to dinner and had a great time...but then came home and didn't go to the comedy club. I was definitely being guided by the spirit tonight because right as I walked in the door, David walked me to our bathroom where I discovered that Kylee had thrown up all over. If David was home by himself and had to clean it up, he would have gotten sick himself. So I was welcomed home with this pleasant surprise, but was so glad I was home to take care of my family.

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After this happened, I was concerned as to what this could mean in combination with GBS. I looked online and found something concerning to me. It said that headache, vomiting, and fever are often followed by paralysis. It said that if Kylee starts to feel tingling in her fingers and toes, that is a sign that paralysis is soon to follow. So we are keeping an even closer watch on her and asking her constantly if she feels tingling anywhere. I told my Mom about this and she asked if vomiting was a side effect of the medicine Kylee is on. I looked that up right away and found that it is! Headaches, weakness, nausea....they are all side effects of the gabapentin and all things that Kylee has been experiencing lately. So this helped put my mind at ease just a little bit.

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After Kylee threw up she was saying she was thirsty and hungry. So she drank water, ate a popsicle, and even ate some saltine crackers. She actually went to town on the crackers! I knew that she didn't have a normal stomach ache. That's definitely not what made her throw up...because she had a serious appetite after she threw up. She kept it all down for a solid two hours and we felt good about things again. 11pm rolled around and it was time for Kylee's last dose of gabapentin. She had 4ml's like she always does. She went straight to be to lay down and I decided to grab a bowl just incase her stomach acted up in the middle of the night. When I walked into her room, she was laying on her bed and her face was incredibly pail. I asked if she was ok and before she could answer me, she sat up and starting to vomit. I was right there to catch it all in the bowl. Well, included in the bowl was her entire dose of gabapentin she had just swallowed. How was she going to sleep peacefully without pain for 8 hours without her medicine in her system!? I got really nervous and decided to call the on-call doctor to get some advice. He had me test her for appendicitis...negative. He had me check her temperature....no fever. He asked me a serious of questions that lead to no problems. So he determined that her body was most likely just getting rid of "gunk" left over from all the anti-viral medications and other meds she was on for 10+ days at the beginning of her diagnosis. It had been a week since her last dose of all those other medicines, but her body was still holding onto some of it and had to get rid of it. This made me feel better knowing this. If she was able to sleep through the night and keep down water, then this was definitely the reason for her vomiting.
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So for now we are just praying she sleeps through the night in peace and is back to her normal self tomorrow. Today has been the WORST day yet. She is in desperate need of a good day tomorrow!

 

Day 18

Today marks day 18 since Kylee was diagnosed with GBS. Since my last post (and something I forgot to mention), Kylee has had some changes. On Monday (3 days ago) our state had crazy strong winds of up to 50 MPH. Considering we live in "farmland USA", dust from the fields was flying through the air like crazy. Considering Kylee's inability to blink normally and as often as a normal person...the wind wasn't welcomed very well. I sent her to school and about an hour later I got a call from her teacher stating that Kylee was complaining of blurry vision. This of course concerned me mainly because long-term facial paralysis patients can eventually develop permanent vision issues because of dry and damaged corneas from their inability to keep their eyes as moisturized as they need to (from not blinking and closing their eyes all the way). I also read online that blurry vision is a symptom of GBS. So her blurry vision could have come from the wind or as a result of a symptom...or both! Either way it concerned me enough to go to the school and give her extra drops and hugs. She seemed ok so I left and sent her back to class. Maybe 45 minutes later I got another call from the nurse this time. Kylee's vision was blurry again and now she had neck pain. So I decided to bring her home so she could close her eyes and rest them for a while.

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I put in a call to Dr. Haynes to inform her of this change. Dr. Haynes informed me that blurry vision can also be a good sign. A sign that her central nerve is starting the healing process and that often times it can cause a reverse affect. So this could very well just be a temporary thing as her nerves begin to heal. We are praying and hoping that this is the case. Kylee's blurry vision continued off and on for the next 3 days. This morning, however, was the first morning that she did not have any blurred vision! Her eyes have been itchy though but I have a feeling that is part of some kind of healing process as well.

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Some good news (or more good news however you look at the whole blurry vision symptom).....Kylee had the BEST day yet yesterday since her diagnosis. She went to ALL of school and lasted all day without a single painful sensation. She then slept all night without any pain whatsoever! She then woke up without any blurry vision and I sent her off to school on time! So we are approaching 48 hours of perfection! This can mean that she is getting better, or that the nerve pain medication is finally giving her body the 24 hour "protection" and effects that it needs to be. Either way, it has been a great almost 2 days now and the clouds are opening up just a little for us!

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Kylee starts physical therapy on Monday. We are very anxious to get her strength and flexibility back so we can't wait for treatments to start! Kylee is excited too because she knows that once her body gets it's strength back, she can dance and play softball again! Also, more good news....Kylee's face is starting to slowly progress again! We are praying and hoping that she won't have another relapse. It's so great to see expressions and emotions on her face again. Oh how I love her smile!!

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Well, day 17 and 18 have turned out to be the best days since her diagnosis. Things are looking up and we are really starting to see a light at the end of the tunnel. We just pray that light gets closer to us and doesn't fade away. We never know with this syndrome. It can play peek-a-boo on us and scare us whenever it feels like it. But for now, we are rejoicing in her progress and continuing to take it one day at a time.

Our GBS Journey

Life can change so fast without any warning. On March 25th, a syndrome called Guillain-Barre rocked our world. That Monday morning was just like every other school morning. I woke Kylee up at 6:30am to start getting ready for school. She ate breakfast, got dressed, and then as I was doing her hair in her bathroom she randomly said "Mom, this side of my face won't smile" (pointing to the right side of her face). We stared in the mirror for about 2 minutes trying to have her make different faces but that right side refused to move. In my mind, I immediately went back to a picture that my friend had posted on facebook about 2 years ago. One side of her face was droopy and comletely paralyzed and she had something called Bells Palsy. I couldn't remember at the time what it was called so I called my sister-in-law Becky and she confirmed my thoughts...that it might be Bells Palsy. So I called Kylee's pediatrician right away and got in about 2 hours later. Dr. Will saw her and after examining her, he also had the assumption that it was Bells Palsy. However, BP is extremely rare for a child Kylee's age. He personally had never seen a child this young with BP. So he consulted with another doctor (Dr. McClure) and they both agreed that she should get a CT scan to make sure nothing more was going on. This is when the fear set in for me. I'm so thankful that David has Monday's off because he was with us for each visit. I don't know if I could have emotionally handled all that went on that day without him by my side.

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So off to the imaging place we went to get Kylee's CT scan. On the drive there both David and I put in a few phone calls to our parents and other family members to let them know what was going on. Once we pulled into the parking lot, my emotions and fear got the best of me and I couldn't help but cry. I didn't want to do that with Kylee in the car because the last thing I wanted to do was instill my fear in her. Thankfully David acted quick and pulled into the back of the imaging place and gave Kylee a priesthood blessing. It instantly calmed me down and set a peaceful tone in all our hearts. We then went into the imaging center to get this scan done. Kylee was a little nervous once she saw the big round machine that she had to lay down and slide into, but the imaging techs were amazing and helped Kylee get through it. She was a champ and didn't shed a single tear. As we were leaving, the receptionist informed me that the doctor's ordered the scan STAT and that we should have results in about an hour.

(Kylee's face Monday morning at the pediatrician's office)

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After we left the imaging center, we went to Walgreens to pick up her 2 prescriptions that are used to treat Bells Palsy. Kylee was fine, other than her facial paralysis, so we decided to take her to school. David and I went home, started doing some research online about BP, and just waited and waited to hear results of the CT scan. We didn't get them back in an hour like the imaging receptionist had told us. It was 6 hours later! But hearing negative and good results made it worth the wait. Kylee's brain was as good as gold! Thank goodness! I could finally breathe!

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 We are so thankful for doctors who want to go the extra mile to ensure our daughter's health because getting a good result from the CT scan wasn't enough for them. They wanted us to go see a neurologist just to make double sure everything was ok. Thanks to my best friend Jaime, she referred us to a pediatric neurologist she had heard of and that had a great reputation. So we called her and they happened to have an opening 2 days later. This is unheard of because normally you can't get in for weeks. We knew that our sweet girl was being watched over from above.

(Lots of cuddles of course...she has been glued to my side ever since)

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Monday night came and things changed for us and we knew something else was most likely going on with Kylee. She had intense pulsing pain throughout her body. It would shift from her neck, to her back, to her legs, to her arms, and even her stomach. She literally tossed and turned and cried every 30 minutes. We tried tylonel, heating pads, ice packs, massages, EVERYTHING! Nothing would soothe her. Tuesday came and we kept her home from school due to the fact that she was exhausted from not sleeping. The pains didn't seem to happen nearly as often during the day. It would only affect her about once every 3 hours or so.

(Getting lunch Tuesday afternoon at Jim's Burros! She couldn't make a puckered lip face without using her hands)

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Then around 6pm on Tuesday night I started to notice the left side of her face tightening up. By 8pm, her entire face was completely paralyzed. I researched bi-lateral Bells Palsy (where both sides of the face lose functionality) and it said that bi-lateral BP affects less than 1% of all BP patients. Ok, first we hear by doctors that children Kylee's age getting BP is extremely rare...and now to read that less than 1% get bi-lateral paralysis!!! Freaked out was a major understatement of what I was feeling when I read that. I called the on-call doctor and he called back within 2 minutes of my message. He said that he wanted me to take her to the ER right away. David was at the temple with the youth for the Easter Pagaent so I was all alone. I packed Carter up and called our dear amazing friends Jamie and Travis. They willingly wanted to take Carter for us for the night and then off to the hospital we went. David was only 10 minutes away from the hospital so he met us there. Endless prayers were rushing through my mind and heart during that 30 minute drive. I just couldn't believe what was happening to my sweet angel girl.

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When we arrive at the hospital, we checked her in and they took us straight back to a room (despite the fact that there was a waiting room FULL of people). Our pediatrician had called in advance and made sure everything was prepared for us when we got there. Again, AMAZING doctors that I now know have been placed in our path for a reason. They drew blood and did some other tests on her. Her blood pressure was high, they found she had a UTI, and her blood showed a high levels of "something or other" that was beyond my understanding. But the doctor said it wasn't concerning or urgent to act upon. He knew we had our appointment with the neurologist the next day so he didn't rush an MRI or spinal tap. He wanted the neurologist to make that call. So after about 6 hours, we left with no answers but also not many concerns either. We were just anxious to hear what the neurologist had to say.

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Tuesday night was another nightmare full of tossing and turning and painful cries from our girl. We were anxious to get some relief for her so that she could sleep peacefully and start her recovery process.

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Wednesday finally came and we went off to the neurologist with high hopes of answers and relief. She ran some physical tests on her and after all was said and done, Dr. Haynes (ped. neurologist) came to her conclusion that Kylee might have a form of a syndrome called Guillain-Barre (GEE-YAN - BAR EY). There are MANY symptoms that come along with Guillain-Barre Syndrome (GBS), but the only symptoms Kylee was showing was her facial paralysis and the random shooting pains throughout her body. Kylee passed all other physical tests though and wasn't showing any "serious" signs of GBS, so hospitalization wasn't necessary and Dr. Haynes wasn't in an urgent rush to get Kylee immediate medical attention. She ordered an MRI to confirm whether or not Kylee had GBS. But even the MRI wasn't ordered "rush". We didn't end up getting it scheduled until Tuesday of the following week (6 days away). So we were able to set our worries aside due to the fact that a professional neurologist wasn't too concerned. Dr. Haynes did prescribed Kylee some medicine to help calm her body at night so she can sleep. We were praying that would work! Well....it didn't! We had another 6 LONG nights of pains and cries.

(At the neurologists office...Carter wanted to get up on the table with his Sissy)

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Because of Kylee's lack of sleeping at night and her random shooting pains, we kept her home from school all week. Her school has been so amazing and understanding with Kylee's condition. She would sometimes go to school but only last a few hours. Her teacher had her classmates made Kylee sweet "get-well" cards and she hand delivered them herself. It was right around Easter so her teacher also brought her a purple bunny. Everyone has been so amazing and supportive! Kylee is so blessed with such amazing people in her life.

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Due to her entire face being paralyzed, she doesn't have the ability to blink normally (or as often) and she can't close her eyes all the way at night. So to prevent her eyes from drying out and damaging her corneas, she has to sleep with a mask and ointment in her eyes. It's not fun for her and the goop in her eyes makes it uncomfortable to sleep. All while she was still tossing and turning from shooting pain. We were very anxious to get the MRI so we could have more answers and find the relief she so desperately needed!

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As the days went on, we noticed that Kylee was starting to get some movement back in her face. The left side was doing much better than her right, but still...both sides were making slow and steady progress. We met with Dr. Haynes again that Friday and she was very impressed with Kylee's facial progress. Kylee continued to not show any other new symptoms that would indicate that she has a bad form of GBS. But Dr. Haynes still believed she had a form of it. Again, the MRI would prove this! So we kept waiting.

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Easter came and she had even more movement in her face! Just look at that smile! We were so excited to see the progress she was making.

 She was able to make it through an hour of church on Easter Sunday...but during that hour she had headache pulses in her forehead and she was really tired, due to the fact that she still wasn't getting much sleep at night from the pain.

 Since Monday the 25th (when all this began), her body has been getting gradually weaker and weaker each day. Which is another sign of GBS. Her back is the most effected body part. She is incredibly stiff and can't even bend over to put her socks and shoes on. So I have been treating her to personal hair washing treatments so she doesn't have to stand as long in the shower. She loves getting her hair washed. Who doesn't right!?

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A sweet picture of the two most important little people in my life! Our family bond has definitely gotten stronger since all of this has began. Just a confirmation that trials are for our own good and make us stronger!

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Throughout all of this we have had more support, love and prayers than I can even comprehend. Our family, friends, and ward family have been the most amazing support system this girl and our family could ever hope for. And it seems that every time Kylee has a melt down because of not wanting to take her medicine or just because she is in pain, someone shows up on our doorstep with goodies and good cheer. I can't even begin to thank everyone for all of their incredible kindness!

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Tuesday, April 2nd...MRI time! The day we had been waiting for so we can finally get the results we have been dying to hear....so that we can get on with the recovery process accurately. We got to the medical center at 8am and got all checked in. At about 8:30am, they took us back and got Kylee prepped for the 2 hour MRI! This was a 3 part MRI so it was going to take triple the time as a normal MRI. They wanted to scan her brain, spine, and lumbar region (back). She, of course, had to be sedated for it since she was required to lay completely still for the entire length of the MRI.

(Just look at the progress of her smile on this day!)

 (All prepped and ready for her MRI)

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The MRI did end up lasting about 2 hours but as they were waking Kylee up, she had a little "freak out" session and they had to medicate her more so she would come out of the anesthesia more peacefully. So we weren't able to see her until 3 hours after they initially took her back. But she woke up fine and we went home, where Kylee slept for an additional 4 hours. We were so happy to see her sleeping so peacefully. It was the best sleep (or only sleep) she had gotten in 8 days!

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An hour after the MRI was complete, we got a call from Dr. Haynes (neurologist). Again, amazing doctors who are prompt and thorough! She got the MRI results and looked over them with a team of specialists. They all confimed that Kylee did not have any form of Bells Palsy, and definitely had Guillain-Barre Syndrome. We were happy to have those final results, but now we were nervous and uncertain of what was to come. Now that we had this confirmation, Dr. Haynes prescribed a new medicine to help calm Kylee's nerve pain. We went to Walgreens and gave her the first dose of it around 7pm that night. And Kylee didn't make ONE PEEP all night!!! It was as if she was a newborn who slept through the night for the first time. I was so relieved, happy, excited, and RESTED because I too was able to sleep for the first time in 8 days! I woke up and felt like I could run a marathon! Ha!

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We met with Dr. Haynes again the next day so she could go over some things with us and to examine Kylee again to make sure she was still progressing and not digressing. Kylee was still making progress in her face and we felt like we were finally heading in the right direction with the right medicine and so forth. Even though the serious risks of GBS are there, Dr. Haynes feels very optimistic that Kylee won't need to be hospitalized because she continues to make progress on her own and her body isn't digressing.

(Playing on the roller chair at Dr. Haynes office)

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April 6th.....first sign of digression. Kylee woke up Saturday morning (April 6th) and her entire face was back to zero functionality. Just the day before, she was up to almost half of her smile back. But Saturday morning she had complete full facial paralysis again. It was very concerning to us and extremely sad because just as I was getting my girl's smile back, it slipped away over night just like that. We called Dr. Haynes to let her know of this set back Kylee had taken and she informed us that it is normal for patients to fluctuate early on in their diagnosis. Keep in mind that this was day 13, and yet, this was still considered "early" in her diagnosis. GBS can last months to years for patients to fully recover. And on that long road, minor and serious symptoms can fluctuate. We are just thankful that so far, Kylee has only shown minimal symptoms and not serious symptoms. We have to keep monitoring her closely to make sure she isn't starting to digress in specific areas such as her swallowing and breathing. She has missed quite a few days of school since this all began. But again, her teachers and school staff are being so supportive and amazing. And even when she has bad days at home, she still finds the strength and energy to finish all her take-home work and homework from school. She is such a fighter and is staying as positive as she can, even through the hard times.

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This truly is harder on me and David as parents than it is on Kylee. It breaks my heart to see her body so stiff and not able to do the normal daily activities that she used to do. She has had to drop out of dance and softball. She is the most flexible dancer in her dance class but now she can't even bend over and touch her knees, let alone her toes. She can't squeeze the shampoo bottle to get shampoo out. She still gets random nerve pain pulses between her doses of medicine, and we have to just help her breathe through it because she can't have more medicine than what has been prescribed. She sometimes cries to me and asks how long this is going to last. She laughs and cries but yet her face shows absolutely no expression. It absolutely breaks my heart to see her this way. But she still has her sassy, spunky, fun, energetic, and beautiful personality and she continues to take one day at a time with a positive attitude. She is amazing me with her strength. She is my rock. I didn't think it was possible to love her more than I already did, but since March 25th, my eyes and heart have been opened to a whole new level of unconditional pure love for my sweet girl. We feel the prayers of everyone! It is carrying us through daily. I know my love for Kylee is just a fraction of the love that her Heavenly Father and Savior feel for her. Having that knowledge helps get me through the hard times because I know they are looking out for her and carrying her in their arms. We continue to pray everyday that she won't digress. We continue to pray that she will heal fast. And we pray for the 3 children Kylee's age in the hospital who are suffering the serious affects of GBS at this time. We are thankful for this trial and that it has brought us closer together. It has taught us so much and opened our eyes. Life is fragile. It can change at any minute. We have learned to rely on our Savior more and to never take his love for granted. God and family are everything! And we know that Kylee is going to kick GBS to the curb soon!