Wednesday, March 27, 2013

Kylee-Loo and Bells Palsy

On Monday morning (3/25), I woke Kylee up to get her ready for school....just like any other morning. We had breakfast together, she got dressed, and as I was doing her hair in the mirror she noticed that half of her face wasn't working. She said to me..."Mom, this side of my face won't smile!" I immediately went back to facebook where a friend of mine had posted a picture of herself 2 years ago when she had Bells Palsy. I mentally saw that picture in my mind as I saw Kylee's face and knew instantly that this could be Bells Palsy. I couldn't remember what it was called at the time so I called my sister in law Becky and she confirmed what I feared. I wasn't too worried though because I knew my friend had bounced back 100% and I did some research and found that the recovery rate is extremely good. So I still wasn't panicked and called my doctor's office for a visit to see where we go from here.

(I just couldn't help myself...I had to go through and post some of my most favorite smiling pictures of my girl! I miss her smile so much already and it's only been 2 days since it's been missing)
After her pediatrician confirmed Bells Palsy but then proceeded to say that it's concerning because he had never seen a patient this young with Bells Palsy, the panic started to set in. If you know me, you know that I am the biggest worry wort ALIVE when it comes to my kids getting sick. So after he said that and then sent us to the imaging place to have a CT scan to make sure nothing more was going on with her brain, I was in full panic mode. But thankfully I have a worthy husband and he pulled the car over at the imaging place and gave Kylee a priesthood blessing. The blessing was so sweet and calmed my nerves almost instantly. I immediately felt my Saviors love for me and for my sweet daughter. He loves her more than I will ever know!
After the CT scan, we just waited and waited. 6 hours later we got the amazing news that her scan came back negative and completely normal. I could finally breathe again! But not for long. That night came and it was the worst night of our lives. We had Kylee sleep with us in our bed so we could keep a close eye on her. All she did was toss and turn and cry and complain of headache pain, back pain, and neck pain. A symptom of Bells Palsy is neck pain on the paralyzed side. So she had incredible neck pain on the right side of her neck below her ear. Thankfully to an amazing friend who rushed to Walgreens to get her some tylonel, we were abe to give her a couple doses of that throughout the night. However, it didn't seem to do much. She maybe got an hour of comfortable sleep all night.
So the next day we kept her home from school so we could let her catch up on her rest. As the day went on, I noticed that the left side of her face started to look a little dull. I made her smile and try to wink at me and her face was gradually getting more and more stiff on her "good" side. By 8pm her entire face was completely paralyzed and she couldn't make any facial expressions whatsoever. She got something in her eye so she went to the mirror to try and see what it was. It hurt so she started to cry. As she cried, she realized her face wasn't moving and didn't look like it was crying. I immediately made her move away from the mirror so she wouldn't continue to panick. I however did panick and googled how common it was for Bells Palsy to affect both sides of the face. After reading that it only affects less than 1% of Bells Palsy patients, the panic was in full force yet again. I called the on-call doctor and he immediately called back and told me to take her to the ER. So we packed up, took Carter to our amazing friends who so willingly wanted to take him for us, and off we went to the hospital.
There the doctor's drew blood, took a urine sample, and ran a few tests. Her blood pressure was a little high and we found out that she has a UTI. So they started her on antibiodics through her IV, gave her some fluids to keep her hydated, and then we were sent home because the blood results came back pretty normal. The doctor at the ER said he didn't want to do a spinal tap or MRI until we met with our pediatric neurologist the next day. He said it wasn't an urgent matter and that we could wait to see what the neurologist said. So we went home about 3am and had another rough rest of the night with a restless little girl who couldn't sleep comfortably.
We went to the neurologist today and I'm so glad we did. She is the most intelligent human being I have ever met! However, with intelligence comes HUGE words that are way over my head. Luckily she spoke somewhat clearly for me and David was there too so hopefully we will have this all figured out soon. She examined Kylee and came to the conclusion that she has more than just a bi-lateral case of Bells Palsy. She ordered an MRI to take a better look at her brain, spine, and lumbar region. Kylee has a very stiff back and can't even bend over to touch her toes. For someone who is considered one of the most flexible dancers in her class, this is concerning. Her legs have been bothering her too and causing a lot of discomfort. So because of those two main factors, the MRI is necessary to take a better look into what else is going on. Either way, the neurologist seemed optimistic!
As for now, we are taking one day at a time. Her face seems to keep stiffening up more and more as time goes on. Her lips are now very stiff and she is having problems saying words that have f's and m's in them. She has trouble drinking and can only drink out of straws (but even that is difficult). Her blinking reflex is gone so she doesn't blink enough throughout the day, which means we have to continually put drops in her eyes to keep them moisturized. Sleeping at night is a nightmare! She can never seem to get comfortable and she is getting up 10 times or more to pee, due to her UTI. I find it easier to not look at her as she is talking to me because it breaks my heart to see her face staying still. I miss her expressions, her animated features as she tells me a story, and most of all I miss her beautiful smile. I can't imagine not being able to see it for 3 or more weeks to come.
Although this is difficult and very sad to endure, I am thankful that there is light at the end of the tunnel and that this is a very curable disease. I'm thankful for my faith in a loving Heavenly Father. I know He loves Kylee more than I can possibly comprehend. We feel His love and the love of our dear brother and Savior Jesus Christ. We KNOW, that even though there are cases where Bells Palsy patients never completely heal, that Kylee will bounce back fast and be smiling up a storm everyday! We are thankful for this trial and that it is teaching us spiritual lessons as a family. But most importantly, we are thankful that it is a teaching tool for Kylee. She now prayers differently and more sincerely. In David's blessing he said that this will help bring Kylee closer to her Savior, and I can already see that happening.
I cannot thank everyone enough for all your amazing support, prayers, love, and positive thoughts. We feel them on a daily basis and it is helping us get through the tough times. We know this battle has just begun and that it can possibly be a long journey ahead, but we know we can get through it by holding strong to our faith and by the love and support of all our loved ones. Thank you all so much!