For the last two days, Julianna has had a little “frog” in her throat. The only way you knew about it is if you were right next to her in a quiet room. It’s the tiniest of noises when she clears her throat, but it was enough to put us on alert.
This morning, Julianna asked for cough assist as soon as she woke up. She has never done that before. The frog sounded larger, and we had to do extra treatments this morning.
To make a long story short, things got worse throughout the day. We have been through this before with her, and we know the things that happen next. She’s working harder to breathe, and she needs extra oxygen to maintain normal oxygen saturation. A few times, I have felt that awful rattle in her chest – it tells me that she has junk that she cannot clear. So far, we’ve been able to get it with extra cough assist.
The new thing this time is that she cannot tolerate laying on her back. It’s hard for her to breathe. Part of it is that junk goes down her throat when she’s laying down. The other part is that her stupid disease has paralyzed her right diaphragm. We found that out last year. Who knows whether or not the left one is working? Have I mentioned how much I HATE neuromuscular disease?
The good news is that she is still happy and comfortable most of the time. She actually wants to play, and that’s what we’re letting her do.
This morning, we told Alex that Julianna was probably getting sick. Would he give her a hug? He went into her room and gave her a five minute hug. He has never done that before – not even close. I don’t ever want to forget Julianna’s face while he was giving her that hug. They decorated a gingerbread house together and actually cooperated. Alex told her that she could continue the decorating while he went to Tae Kwon Do. Julianna went on for a while but then said we needed to wait for Alex to finish the house.
Our kids are like everyone else’s at this age – they fight and each want their own way. This morning was different.
I don’t know what the next few days will bring. I am, in turns, heartbroken and in denial. She was doing so well.
Right now, at this moment, she is happy, comfortable and doing what she wants. My prayer is that this continues until the very end.