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.
*
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.
*
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.
*
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.
*
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!!
*
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!
No comments:
Post a Comment