"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Saturday, January 9, 2016

Katya's Umpteenth Trip to Baltimore-- Part 2

Tuesday morning we had to roll out of bed far before we were ready to get up to get Katya on time to her early morning appointment with her plastic surgeon. Charity and I did as much packing and stripping of the room as we could with Katya's help before we rushed off, and Paul and Chad continued packing and cleaning up.

Doctor Dorafshar usually comes in to see Katya with a whole accompaniment of people--it was really nice (although very unusual) that this time he was the only person who came in the whole visit! I think Katya was a lot more relaxed than usual due to less people crowded into the room, and I felt like we had a better conversation with Dr D. due to it as well. He was free to be himself, instead of being the teacher or the fellow surgeon like he usually is when we have office visits.

He expressed much relief that Katya had survived her infection and was doing so well. He said that he is leaving open that she could need at least one more surgery on her head, in the future. He admitted that her risks of having the infection return are  high if she has surgery or some other significant health event that would lower her immune system drastically. That is not what any Mom wants to hear, but I refuse to live in fear of that. We will continue to do every thing we can to keep Katya healthy and strong and walk in faith, not fear.

I have to admit that I do NOT like the idea of more surgery on Katya's head though. I will try to push that to the back of my mind and not think about it too much at this point in life. While I'm proud of how tough Charity and I stayed, and how well we worked together to get through this, the time was super hard especially as I lived in the hospital without a real break for several weeks, and a good bit of that time Paul was gone working so it was quite lonely and tough. I know it would have been far worse if Charity had not been able to come spend huge chunks of the days with me and I do not know what I would have done without her, but still . . . I simply am not ready to even THINK about doing that again. I know I coped over all so much better than back when Katya had her first cranial vault expansion and reconstruction for a variety of reasons, but it was still long and hard this time too, and felt especially lonely with Paul out of town working so much of the time. So nope, don't want to think about it and I hope it's never necessary!

We also discussed the possible jaw surgery Katya will need in a few years. Doctor Dorafshar gave us the good news that it's less likely she would get an infection in her jaw than up on her skull. She likely will need hospitalized for that surgery too if she has to have it (which he thinks she will but he said when the time comes what an orthodontist thinks will help determine the course of treatment of course) for at least a little bit but that some how feels less upsetting right now to think about . .  .  although I'm sure if it came right down to it, we would have a tough time with that one too. The good news is that no matter how we will feel, we will be strong, tough and do whatever needs done for Katya.

So pretty soon Doctor D. got the photos he needed for Katya's records, and we went off with promises to come see him again in 10 months or so when we return to Baltimore to take Katya to see her eye specialist.

Katya had been showing us the way to the Children's Hospital the day before and kept trying to get us to walk that way and was super sad when we would not! So we were happy to be able to take her to the Children's Hospital with a card and chocolates for her former nurses. We figured when she got up to the floor she would NOT want to go on to the ward and Charity was going to wait with her in the waiting area and see if any of the nurses wanted to come out and say hi. BUT, Miss Katya the brave went marching boldly right into the ward and was all happy to be hugged by some of the nurses who were there that had cared for her before! ;-) And then, to my big surprise, she began saying and signing, "Six! Six!" and went marching confidently off to her old room to look in! It was (fortunately) empty except for the cleaning lady who remembered Katya from all the weeks she spent cleaning her room, and she sure was thrilled to see Katya up and strong and hearty! Katya stared interestedly into her old room and took it all in, and the was satisfied to leave the ward finally. Afterwards, she just laughed and laughed and laughed and smiled and smiled and it was clear she was very satisfied to go visit and then leave again!

So we rushed then over to the Children's House to try to race around and get loaded up and all our areas cleaned for the next family while also hastily making and eating some lunch. And then, we were all loaded up, and ready to head home. It was obvious before we got out of Baltimore that we were in danger of *not* making it home as the van's transmission began jerking and slipping every now and then as we wended our way through the crowded city streets.

--To Be Continued