These posts have become fewer and farther between, which is the sign of a good thing! Since the last post in November, we’ve dropped one more med! We are now down to Sildenafil (Viagra) 3x/day, which she will likely stay on for a while. We scheduled Isla’s follow-up echo for the end of February. Unfortunately, that appointment didn’t go so well. Isla’s cousin Lila wasn’t allowed to come to the hospital with us because of respiratory season, which turned out to make a pretty big impact. When we tried to do the Echo, she wasn’t having it. The Doctor wanted to sedate her to get it done, but we negotiated with them to get a little more time to work with Isla. We made a plan to bring her to the hospital once a week for a month to play, get used to the surroundings, and learn to have a positive association with the space and people. We also practiced using sticker charts so we could use one the day of the echo so she would know what to expect. We scheduled the follow-up echo for the beginning of April and agreed that we would resort to sedating her if our plan didn’t work. Also, because Lila made such a big difference, they let her come with us in April. All of that combined worked! One month later, Isla was able to have a full check-up- Echo, EKG, blood work, etc. All without sedation.
Having her get through the appointment was one goal. The other was having good test results… which we did! Her Echo looked “normal” and her labs looked good with the exception of one elevated number which might not mean anything. We got the go ahead to wait 6 months until her next Echo. The will be the longest break we have ever had.
On another note, Isla started preschool in January and is loving it. She has been exposed to lots of germs and has had a cold on and off since she started, and she has been handling it so well. It’s great to see her be able to run around and play like a “normal” kid. We hope and pray that everything continues in a positive direction and we can report great results after every visit. Our Doctor has some patients that have improved and then back-tracked, so that will always be a fear. But we just have to hold on to every bit of hope and enjoy every positive and healthy moment. Lots of love.