Day +89: Last week Kiira had a swallow study. It did not show any strictures in the throat or upper esophagus, which is great, but she is still choking on soft solids such as avocado. Our next step is to resume feeding therapy when we get home and hopefully she will pick up the proper eating technique quickly.
Today’s clinic appointment was quick and uneventful. Kiira’s white blood cell count’s are back to normal and CMV (virus) is still detectable but below the treatable amount. We are staying off IV meds and can plan to go home in two weeks.
On Wednesday Kiira will go into the OR for a skin biopsy to determine if she is producing any collagen VII yet. It is a routine procedure but prayers are still appreciated.
My aunt left yesterday after a 10 day visit. It was so nice to have an extra set of hands to entertain Kiira. I even got a night out with a friend which was so nice. Thank you for your help! Jason will arrive in two weeks to drive home with us. It is hard to believe we are wrapping up everything here and we may have had to do the BMT twice, but it could not have gone any better both times and I’m so thankful for that!