Karly was at her Congestive Heart Failure doctor on Friday. What a great report we were given. The EKG is normal, so the medications must have been the culprit. Her heart sounds good. She may want to add another heart drug so it can work less hard, but all in all GREAT! Her kidneys are a little happier. She will be getting another ultrasound of her kidneys in the next month or two to see how the pressures are going. If it has worsened, then she will need to have them ballooned again. If remaining the same, then just keep doing what we are doing and add the heart medication. Since stopping the medications 2 weeks ago, we haven't noticed much. Her skin has been acting up atypically, but so far she can manage and live with it. Big news was that she tested negative to milk at her 5 month appt. They have a new person at NIH that will be setting up a food challenge lab that Karly will qualify to be part of when it is ready. This is exciting. If this can happen, then there is hope for other foods to follow. She can only imagine.
She started her class 2 weeks ago. She is able to enjoy many things that make her happy. She is able to sleep more normally. She can take everything in pill form now and without cutting anything in half. She is eating without getting any food stuck. She has normal people hours. It is so cool not to travel to NIH every 3 weeks, but I have to say I miss our people there. We do stay in touch though.
Dillon went to be with our Lord Jesus on January 12. His family needs continued prayers through this time and times to come. His younger sister also has DOCK8. She will be much in the same thought processes as Karly having lost an older sibling to this disease. It makes me so sad. I feel this loss for this family and what is to come. Please stand with us in prayer. "For our citizenship is in Heaven, from which we also eagerly await for the Savior, the Lord Jesus Christ." Philippians 3:20
Kelcy will be traveling with her mom later this month to see if her mom can be her liver transplant donor. They have a long road to travel. Please stand in prayer with us for them.
We just don't go to far ahead of ourselves. We certainly have enough to handle in just one day, don't we? "The mind of man plans his way, but the Lord directs his steps." Proverbs 16:9