Man, I'm really trying to be positive, its just a struggle at this point this week.
Jillian has seen a doctor Sunday, Monday, Thursday and we will see one later today. Yesterday she got to meet the new nurse practitioner. Brent took yesterday off with her since Halloween is kinda a big deal in the preschool world so I figured it would be good for me to be at work. Brent called in the morning to give the doctor an update like they asked and at that time she was crying and wheezing. By the time they got there she stopped. One they left she started again. AHHHH! Her pulse ox did dip into the low 90s for them so at least the got to see that. Brent tested her pulse ox at home while she was sleeping and it was 88. Not where we want it to be, hence why they are having us come back in today.
She perks up just before lunch time and then stays a little better until around dinner time when she makes a fast decline again. The only time we can get her into the doctor though is in that time frame, so they keep seeing her at her best and not what she sounds like when we go to bed at night listening to her wheeze loudly.
This whole situation is playing into one of my biggest fears... the fear of not being believed. When I was in high school I got very sick but my symptoms and test results were not lining up. I had a doctor who I think still questions the validity of my illness. A doctor at Children's who had seen this before in teens figured out what was wrong and did something about it. That situation though left me with a major fear around the medical community. I have a hard time trusting that they believing what I am saying. I go into most appointments with the assumption that they are not going to believe me until I prove myself. This fear has carried over with Jillian at times. I dont want this fear to be there however sadly I have dealt with some medical professional that have proven my fear right before. So that leaves me just trying to do the best thing for her. Telling them the facts and bringing as much data as possible to help her.
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| Chilling with daddy, taking a neb |
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| Happy Halloween |
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| Goodnight world |
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| Today it seams to take 3 people to give one neb, she was kinda feisty |
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| And some days there are little reminders that our life is not normal |
Oh hon! It's true... your life isn't normal. God is asking you to trust him on far heavier matters; and He's asking you to learn more, endure more and adapt faster to BIG things, than most parents. Wish I knew you better, so I could offer more than words, but my heart prays so often for you guys, and it rejoices every time I see you and your lovely little girl.
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