Everything went well yesterday (well, other than the mix up where I was told to wait in the wrong spot for Miss Optimism and when it was more than half an hour after she was supposed to be out and she still wasn’t and fear was beginning to choke me, and was finally told she was up in her room!). Miss Optimism recovered from the procedure like a trooper of course because she has the most amazing attitude. The good news is that they didn’t find anything structurally wrong with the areas they checked. The bad news is that they didn’t find anything structurally wrong with the areas they checked.
If they can’t find anything on the one remaining test, then we will probably have to accept that this is the way our little girl has to live…not able to go outside for at least 6 months of the year, not able to do some of the activities her siblings can do, struggling to breathe, and on more than half a dozen medications, each with their own side effects. We will have to change our mindset about it and just make her life the best it possibly can be.
There is one test left to go, the one she has to be awake for that we tried unsuccessfully at the other day. There is a chance that we may be able to do that as an outpatient, so she may be discharged today. Once she is discharged, we will drive over to have her two injections because it just so happens that her appointment is for today and it is important that she get them on time. Not a fun day for my girl, but she will find the positives in it and she will be thrilled if she is allowed to go home. We both miss our beds and the other kids and The Husband and familiar food and our shower!
Please continue to pray for all of us as we navigate through the next few weeks. Once she is home, she will still be on the same care that she was on here, so round the clock treatments etc. so we are not at the end yet.





















I wish you could get a nurse in for the nights. Then you could sleep well and have energy to take care of her and everyone else better. Fight for it! At least a few per week…
I’m glad you posted about how things went. Yes, both good and bad results, given that they couldn’t find anything. I hope you’re at home now, and able to have a shower in your own bathroom.
Wish I were there.
R xx