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

Dr. Ben Carson on Katya Dueck

Monday, September 26, 2011

Strep has Struck

Poor Miss Katya is very sick with what turned out to be strep throat . . . we spent a good chunk of time in the ER tonight after spending a long day at the specialist. (4 hours *IN* the Drs office plus lots of travel time!)

Please keep praying for Katya and for us . . .  I will try to post more when I can think more coherently but I did want to let you know that the Nuero Opthamologist did not see any swelling of the Optic Nerve that would indicate Inter-Cranial Pressure (or ICP). He admitted that just because he didn't see any thing today doesn't mean much except that today there isn't any ICP. He wants to continue to "closely follow" Katya with repeated check-ups to monitor it "as this is an evolving situation". I honestly was glad that he seemed to understand that particular aspect very well! Maybe better than some other people are understanding it.

In the meantime, Dr. K. is  referring Katya for two more appointments at two different places (with then a follow-up with him again after them--so three new appointments) to try to determine what level of vision Katya does have and whether or not she needs glasses. Since Katya can not talk, it sounds like the appointments are a bit more of a hassle than a typical screening/exam would be for a child with speech.

And of course . . . because something just has to happen to keep our life from being dull . . . while sitting there with Katya listless and racked with fever in my arms, the fire alarm went off and everyone had to evacuate the building  . . . so down and down and down the stairs from the 5th floor I had to try to go with a very sick and miserable little Miss Katya and out into the windy and drippy parking lot till the fire men all arrived and checked the building out and gave it the all-clear . . .  Just thankful that after all that hassle, we did finally get seen by the Dr. even if it was 5:30 before we could get out of the office when her appointment for this was at 1:45 . . .

I'm also very grateful for my friend, Marian, going with me to to be our driver,  keep my sanity and be my "camel" lugging my bag and our water bottles so I could carry Katya! May she NOT get strep and may she and her household be blessed because they were willing to show this kindness to Katya and us!

Sunday, September 25, 2011

Disability Awareness Sunday

Thanks to some helpful friends of ours, we were put in touch with a church within driving distance that has a disability program. The program Director, Laura, has been very kind and helpful and supportive via email again and again since we brought Katya home. Indeed, sometimes her kind words and prayers were virtual life-lines to me during some dark and discouraging moments. Knowing that this resource was even available helped give me a extra shot of courage at times.Especially in the early days that felt so very overwhelming as our family struggled to adjust and cope, while Mom was still zonked out with jet-lag, and we were fighting not having a SS # OR medical insurance for Katya in the face of her ovewhelming medical needs!

Unfortunately, we weren't able to go to their big picnic yesterday which sounded like it would have been a ton of fun for our whole family due to Katya, Charity, and Chad all being sick, and yours truly feeling like dirt due to being up in the night with Katya for about 2 hours.

This morning Katya seemed to be feeling better, and a good night's sleep had done a lot for me, so those of us who were feeling well enough went out to the special church service, leaving Charity and Chad at home together to nurse their stuffy noses and coughs.

I was so thankful that we went . . . I can't tell you how many times I was in tears or near tears during the service . . . so many things ministered to me--the songs, the fact that the service was so full of people with obvious disabilities participating in the service in key parts, the genuine warmth and enthusiasm for Katya that we sensed, the story of the special speaker, Betsy Bolick who shared her journey as a person coming to terms with God's love for her and His plan for her life in the face of huge physical issues . . . we just really, really needed that support right now.

We plan to try to keep up with their Saturday program for families as much as we can this fall and winter. Kristina is very excited that she will be able to be a helper with the kids with special needs--and I think she will shine in that role. She's going to start out being Katya's buddy at first to help ease Katya's transition into the events, and then we will see what works out from there. I am grateful for this great opportunity for Katya and our family to find some practical emotional and spiritual support. Honestly, we have really been needing it.

Like I told someone today, you can adopt a child with multiple handicaps knowing you will want and need extra support--but you don't realize how BADLY you want and need it until you are right into the thick of it. While I'm very grateful for the online support and the in-person support we have, there is a real need for more in-person support and net-working. Thankfully, this church has heeded the call of God to reach out and try to meet that need.

For more information, and for ideas to perhaps start or enhance your own ministry to people who are challenged in various ways: http://www.zanesvillecma.org/disabilitypage.htm

Tomorrow Katya, who is now going to school 5 days a week *without* Mommy or Daddy, will be taken out of school early so we can get her to an appointment in a larger city with a Nuero-Opthamologist. I am praying that through this visit, God will give definitive direction about our next steps for Katya's health. We have some pretty large concerns right now about what is going on with her walking--what started out as an occasional foot drag on one foot spread to both feet, and now is a almost constant thing. It went from being when she had shoes on to even without shoes--you can hear her feet as the "scuff" across the carpet. Saturday she lost her balance and almost pitched head first down the steps right in front of Paul's horrified eyes. Her gait has become strange and poor Katya has totally lost the once-graceful walk she used to have that we used to comment on. I feel scared and yes, frankly, angry at times. I feel like a lot of delaying has gone on when it was obvious her brain was growing rapidly and pushing her head out in new places  . . . but each place wants to schedule appointments several weeks or more out in advance and so this process is dragging on and on while our daughter deteriorates before our very eyes.

Paul and I have come to the conclusion that if the Dr. tomorrow says, "No pressure on the brain" we are going to take serious steps to try to get whatever is going on looked at. Maybe even drastic steps. Please pray for Katya and for our family. When she had so many strikes against her, it's VERY hard to see her lose one of the things that was a huge positive in her life.

In the face of all this, we cling to God and to each other . . . .