We were back in our "old stomping grounds" this week as Katya had her post-op follow-ups. Monday she saw Dr. Carson, who pronounced that Katya "looks like a million bucks!" He was extremely pleased overall with how well she looked and with every thing we could tell him about her progress since he had last seen her back in early April. It felt good to touch base with him again. Kristina was thrilled to get to meet Dr. Carson, and asked him to autograph the copy of his book, "Gifted Hands" that she had carefully been saving up all her money to purchase for that purpose!
Tuesday Katya saw Dr. Dorafshar who was also fairly pleased with Katya's progress. The only area of possible concern at this point is that it seems one of the absorbable plates that was placed in her forehead has the edge of it pushing outward the last few weeks, creating an unsightly ridge. Dr. D. said that he will not get excited about it unless it is still that way at the 1.5 year mark post-op. Then Katya would probably have to have surgery to remove it. But hopefully we won't have to ever cross that bridge. No one even wants to think about surgery with her again after all the complications post-op.
We also found out that neither Doctor had been entirely sure that the surgery they had done would be sufficient. They were concerned that the back area of her head would not expand any further in spite of their best attempts, and that she would have to undergo an extremely risky surgery to try to give Katya's brain more room. To their great delight, both Doctors concurred with us that even the part of Katya's skull behind her incision line has grown a good bit higher, AND wider since the surgery. They both feel that unless complications come up, she is done with the surgery she needs now to give her brain the room it has been urgently seeking for all these years! We are truly hopeful that is the case, and are very grateful to God for leading their minds and hands to take the correct steps that seem to have resulted in this (so far) happy ending!
Dr. D. took many photos of Katya, attempting to get a few that can be used in a report that will be printed in about a year about her case. Not only was her case unique due to her age and the severity of her craniostenosis, but Katya also was one of the first patients he used a new computer program on to create a model of how her skully currently was pre-surgery AND how he wanted it to appear post-surgery, along with mapping out exactly where and how they would need to cut and re-arrange her bones. He also would like us to send him some of the photos we have of Katya as a younger child for possible inclusion in the article. We are hopeful that Katya's story, and all that she had to suffer before she had treatment, as well as all the pain and sorrow she went through post-op will not be wasted--that it may some day help save another child's life, or improve their quality of life due to the things that were learned on her case, and how it will be used as a teaching tool.
Dr. Carson said that he is going to be very interested to follow Katya's progress over the next couple of years. I pointed out to him that he will be completely retiring next year, and then how would he know what was going on with her? He assured us with his genial smile and twinkling eyes that we need not worry--he WILL keep tabs on her and will be getting regular updates about her because he is so curious to see where she goes in life. I was deeply touched by this, and to me it speaks volumes about how Katya has touched the lives of the people she comes in touch with, as well as Dr. Carson's intense interest in her.
The great news is that Katya is on her final step-down dose of meds, per Dr. Carson's orders, and very soon should be completely off of them after daily meds ever since her surgery on March 21st! (well, she still will be on her allergy meds, but those are relatively uncomplicated, and don't require weekly labs and so on).
And the VERY best news of all?! That is that Katya needn't come back again until March 2013 unless some complication arises! Yippe! We love her surgeons, and find Baltimore an interesting city, but we truly won't shed any tears about this advancement in Katya's health status! ;-)
Thank you again, all of you, who have been praying for Katya and our family and supporting us in so many ways on this journey with her . . . we continue to need your prayers and support.