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

Dr. Ben Carson on Katya Dueck

Thursday, September 13, 2012

Katya Needs Prayers

The Sunday (September 2)  after Katya's very eventful day with the trip to the library and purchasing Legos, Katya was a weepy, emotional mess. Any thing and every thing seemed to trigger tears, and her usual Lego building abilities didn't seem to be there for her. She would try to put pieces together, and mis-judge how to match them up, how much pressure to apply and so on. Instead of pieces going together well like they usually do things just fell apart, and poor Katya would weep loudly.

We finally surmised that perhaps school and then the Saturday excitement had worn her out, and had her lay down with her pillow and blanket on the couch to rest and listen to music. She gratefully lay there for several hours. We commented on how strange that was, but tried to dismiss it as perhaps a normal reaction to all the busy life she had been having lately.

However, as day after day went on from that point, it became clear that Katya was no longer having good days, or happy days. Lots of weeping, whinning and needing to lay down and rest. Her sparkly smile pretty much all but disappeared.

And then she began not sleeping well at night AT ALL. And then it went to even waking up so thoroughly, weeping and howling that I would have to get up and sit with her for hours in the living room till she went back to sleep.

Along with all this, we noticed that she had a lump on the back of her head. About the size of a large marble, it was hard and bony, and at first actually hurt Charity's arm when it pressed into it when she was rocking Katya--which incidentally was how it was discovered. As the days have ticked on, this lump has become slightly less sharp, but there are other lumps and bumps rising around it on her skull, very much like how things were prior to her surgery.

Even the school was noticing that Katya was not feeling well nor acting at all like the sunny, bouncy little gal who had first started school a few weeks ago.

I am in touch with Katya's Doctors and they are working on coordinating their schedules and trying to set up some appointments for Katya back at Johns Hopkins. Also, possibly, some testing. In the meantime, we have discovered that clearly Tylenol reduces her weeping and whinning to the point that she can actually smile again. So it's clear she is in some significant pain. Giving her Tylenol before bedtime has brought back better sleep for all of us, which is crucially important.

We ask you to pray for Katya and our family . . . it is hard to see her deteriorating and returning to so many ways that remind us much of her pre-surgery. We miss the cheerful, smily little girl she had become who went around signing "Happy! Happy!" multiple times a day with a giggle and a grin. We wonder what is going on inside her head and pray that her already damaged brain is protected from further damage.

I'm grateful that the Great Physician knows about Katya's needs. I'm grateful He also knows our family's needs as we seek to care fo her. The many trips out of town to obtain medical care for Katya are stretching our family's finances horribly, as the things like gas, hotel, food etc. are not covered at all by our insurance. Every time we have to go to John's Hopkins, it costs around $325 or more for a one night stay, when we figure gas, hotel, food, and parking fees. In addition, Paul loses time from  his work, resulting in a loss of income. Sometimes with needing to stay more nights, it's even more costly.

 Several friends have encouraged us to put up a PayPal button for anyone who wishes to make a contribution to Katya's on-going care expenses that are not covered by our insurance. While we hestitate to do this, we do respect the friends who have encouraged us to take that step, so we plan to go ahead and set up that button. Please know that any donation, no matter how small, will be gratefully accepted. Also please note that we have no plans of continuing to make a splash about the button or donations so this is your first and hopefully last notice about it. ;-)


Sandie Flannery said...

Is there a Ronald McDonald House you can stay at? They were a life savings for us. I will pray for Katya's speedy healing,

Julie said...

Many prayers for sweet Katya.

Milena said...

I prayed for Katya before (Hevel told me) and I'm praying now. I so hope the doctors will find out what's wrong and that it will be something they can easily fix, without major surgery! I'm so sorry for Katya and for all of you.

(And I donated before I even read this post :-) I'm sorry I couldn't contribute with much though.)

Hope Anne said...

Thanks to all of you have been leaving kind comments. We have stayed at the Chldren's House on two of our trips to JHH--both times they were trips that involved surgery. The demand for the RH and the CH in Baltimore is so great that I guess normally only families who have kids hospitalized get to stay there. We have never been able to stay there on any of our other trips. We are grateful that the times we most needed it that we could use it. (When we were there for Katya's cranial reconstruction, we were there all but the last night--then we had to find lodging else where as they neede it for another family. We were paying $20 a night at the CH. The one night of lodging elsewhere?? Cost $112.00. A kind friend pitched in and paid that for us, so it didn't come directly out of our pocket that time, but you can see the constrast in price.) Thank you to all who are praying. Milena, please never think your donation "isn't much". It is all helpful and gratefully accepted!!