Finally, I have good news to share!
I’m going to try really hard to explain this and I hope I don’t confuse everyone.
So after talking more with the team and looking over the test results from that treatment I am feeling more hopeful.
Even though the antibody is still very strong (picture shared last update of test results), the amount of strong antibodies is less than before treatment.
Before treatment she had 29,000 of that antibody and now she only has 10,000. That is very promising.
So the idea is that maybe we tested a little too early to see if the treatment worked.
We plan on retesting Monday to see if the antibodies are still as strong as the previous test.
The downside is that even though there are less of the antibodies, it is still a very strong dangerous antibody and we need it to be completely gone or at least weakened.
10,000 of that antibody at that strength can still cause a lot of damage.
However, I am looking at this as an answer to a prayer that God is still working and once again He proves that I need to just give it to Him. He has never failed us.
Kylie’s oxygen needs have improved with the high dose steroids and she is only requiring bipap (step between cpap and full ventilator) while sleeping
We will be receiving our home ventilator today and I will begin training on it.
Now, some not so great news…
The EEG on Kylie’s brain came back with something called “slowing”. I’m very ignorant when it comes to neuro so I don’t fully understand.
The neuro team wants to do an MRI on Kylie’s brain to get some more answers.
Please pray that there is nothing to be concerned about.
Please pray for Kylie and that she continues to improve and that this treatment did actually work!
