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

Dr. Ben Carson on Katya Dueck

Sunday, December 28, 2014

Christmas Break

We load up the kiddos in their PJ's and drive out at night to look at lights while listening to Christmas music. Katya finds this amusing, but signs, "yes" when we ask her if she likes it!

We drink quantities of cocoa and eat lots of popcorn while watching movies together.

Chad keeps working on his online reading tutoring program, and Katya closely observes.



Cooking baking happens.


And a few presents were opened.






And we rested from our labors.




And after resting from our labors, we rise up the next day to do more fun things.




And then more lights!

 

Christmas break seems to be working out well for us this year. Well, except for a few pesky little issues like not being able to find a few items of our Christmas decor, especially what we used in the girl's room! But, Charity, ever creative, solved that one. She used a milk glass bowl she owned, some greenery from one of our shrubs, and two absolutely adorable birds on clearance from Lowe's.


We have one more week to enjoy!
How is your life going?

(All photos credit to Charity)

Friday, December 12, 2014

And Back to Baltimore We Go

Monday, we ran Chad and Kristina to friends of ours to be baby sat, and then Paul came home, we loaded up Katya and Charity and took off for Baltimore, to return to Johns Hopkins yet again.

We got to the Children's House in time to enjoy the Christmas Decor and the new improvements they had made, relax and snack a little, and then head to bed.


We didn't have the best night for one reason or another so all of us were pretty sleepy the next morning, but Paul went and purchased the items we needed to fix our breakfast, then we fixed breakfast, ate and cleaned up. By that point, it was almost time to head over to the Hospital so we had to hustle a bit but we got there on time.

The Docs were not running behind schedule so even though we needed to see 3 different Doctors, we still got done in less time than we have often spent there!

She saw plastics, neurosurgery and genetics. Everyone was super happy about all the progress Katya has made developmentally, about her emerging use of the Ipad for communication, and over all how well she is doing. There were happy comments about how much more responsive and interactive she was than back in March, along with happy remarks about the contents of her progress reports and the samples of her school work. There was some concern about a remaining surgical screw in her forehead that is not absorbing as it should be, and the continued size of her "soft spots" that did not fill in with bone, but nothing is going to be done immediately about either of those issues.

After we were done with the Doctors, we went down to the out-patient lab to get some extensive blood work done as a number of things are being checked. This was not a good experience for Katya--for whatever reasons, the Hopkins out-patient lab seems to trigger her Post Traumatic Stress really badly, and now that we are sure that is what is happening, we will avoid getting any more labs done there if at all possible and  get them done at our local child lab where she consistently does much better handling blood draws.


 Right before we got to the lab, we stopped impulsively stopped for a photo beside this display. Do you see the Menorah to my left,  as well as the tree?

By the time the blood draw was done, poor Katya was so white, shaky and worn out that we had to stop at the cafeteria and allow her to recuperate over a frozen fruit bar! Then we walked back over to the Children's House.

There, we vegged out till supper time--which was brought in for the families thankfully. It felt good to just sit down and eat--no having to figure out what to fix and then having to clean up!

Figuring it would do us all good to have something cheerful to focus on before going to sleep, we loaded up and drove around the City Center on various streets. The light displays were stunning, and Katya was so appreciative of them (as we knew she would be!) so it was fun for all of us. Then baths and bed for us all.

The next morning we had to get up early for Katya's early morning appointment with the Wilmer Eye Institute at their Green Spring Station. Unfortunately, the trip turned into something of a misadventure when our GPS led us meandering around back streets of Baltimore that we had never seen! What normally would be about a 20 min. drive took nearly an hour and of course we were a good 15 min. late for our appointment! But I had called in when I realized what was going to happen and the lovely people there said to just be safe and get there when we could--and as it turned out, we had about the fastest in-and-out we have ever had at the eye clinic all the times Katya has gone there, so we were pleased about that!


Katya was pleased about her chance to choose a LOT of stickers after most of the exam and the drops were administered!

She then sat contentedly in the waiting room with her sun glasses on, waiting for her eyes to dilate.


When Doctor Repka examined her eyes, he gave us the extremely good news that Katya's "wandering eyes" had stabilized so much since March that he is taking surgery off the table for now! He was quite surprised that this had happened--he had not expected it to due to the level of brain damage Katya has because her craniostenosis  was completely untreated prior to her arrival in our home when she should have had surgery for sure before she was 2 years old--possibly even before she was a year old! He asked a handful of questions about any changes in her life since March, then happily told us that he is going to assume that the increased appropriate stimulation for her brain in her current school placement is playing a huge role in this wonderful improvement! That was excellent news for us--we knew already that the placement was/is SO good for Katya in so many ways, but to hear that is possible it improved even her brain's ability to control her eyes better is such a blessing and a testament to how important it was that we fought for her to be placed there! YAY for God-given answers for our girlie!

AND--YAY for the brain's ability to continue to assume new pathways in spite of the massive damage so that Katya can make forward strides in so many areas in life! We are very grateful!

After we were done with the eye exam, we skeddadled back to the Children's House so we could pack, clean and roll out towards home. Katya really got into the spirit of helping this time and due to that, we were able to get wound up there so much easier than it used to be!

When she realized we were stripping all the bedding off the beds to stuff into the huge mesh laundry bag, Katya gently showed us that we were not wanted--this was HER job! And away she went! She even pulled and tugged that huge bag out to the hall so Paul could carry it down to the basement! We were SOOO proud of her. ;-)



 
We traveled pretty steadily back towards home except for a stop to let her stretch her legs at the outlet malls in the Hagerstown area (they have a play ground) and then for a hearty supper. Katya wants soup every single day to eat and had not been much impressed with the hasty PB and J sandwiches we grabbed at the Children's House before heading home.

The Chicken Tortilla Soup was much more to her liking!


Yes, she seriously ate that entire huge big bowl of soup! ;-)

We arrived safely home about 8:30 pm that night, got Katya bathed and into bed. She was so exhausted from two short nights that we knew she would need to sleep in probably in the morning--and sure enough! She did not wake up till nearly 9:00 AM. Of course, her school ride had long gone, so after hastily getting her ready, Paul took her to school, and I went the other way with Charity to pick up our other kiddos.

Thankfully, everyone got home safely.

(All photos compliments of Wares By Cherry, with the exception of the last photo.)