"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, February 17, 2013

A Full Weekend

Katya was feeling enough better that we had a very full weekend.

We ran off to the support group party. Katya wore the jumper Charity sewed for her. Charity's usual violin lesson was cancelled for the day due to her teacher being out of town, so she could come too.

Katya wasn't in a picture taking mood, so we didn't get any real good ones of her that really show the jumper, but there you have it . . .

Katya did enjoy the party overall--she is slowly getting more comfortable there and we are having less and less tantrums, and more participation.

One of the helpers commented to me on how GOOD Katya's eye hand coordination is for fine things. Way better than she would have expected. Yes, it's one of those bad-things turned good--all the years spent "juggling" small items in her hands and rubbing  them on her cheeks when Katya had failure to thrive at the orphanage led to good finger dexterity and strength. She quickly dropped the need to carry small items around to rub on her face after she came home and was getting love and stimulation. In fact, she dropped it so quickly we were truly amazed. But now her fingers are very nimble for playing the piano, playing the harp and various other activities.

One exciting thing from the support group was that we had TWO new families who came--and both of them have adopted children! Up to this time there were not very many families with adopted kids--only one that I know of, and that Mom, being a nurse, usually helps with the kids instead of sitting in with the the Moms in the support group. So that left me the only one with had the unique combo of adoption AND special needs. I was very happy to have "company" in the adoption/special needs category.

Also, a delegation came from a church in PA that is thinking about starting a special needs ministry. They wanted to observe and ask questions. Knowing how many times parents and professionals expressed a wistfulness for a similar program when we were at Johns Hopkins Hospital, I know it's a real need likely all over the country! I hope that what they saw yesterday makes them eager to go home and launch such a sensible and helpful program in their own community.

After the support group, we dropped Kristina off at a friend's house for a birthday party. Then we came home, ate a quick lunch and tidied up the house before heading out to a very special party.

When we were staying at the Children's House in Baltimore during Katya's reconstruction and recovery, we learned to know a family, also from Ohio, who was there as their daughter had a hemispherectomy performed by Dr. Carson's associate, Dr. Jallo. They were in the "rehabilitation" portion of their stay there, and during a time Katya was very medically unstable, they were there for us with support and prayers.

Since both of us were very tied up with our own daughters, we never met each others girls, but kept in touch loosely after our ways parted through our blogs and emails.

Yesterday they threw a "One Year Seizure Free" party and we were thrilled to be able to go! It just felt RIGHT to meet again and to introduce our daughters to each other, and to thank God together that they are both alive and doing relatively well.

I'm VERY happy to report that Katya did amazingly well, given that we walked into an entirely strange home, full of entirely strange to her people! She needed Mommy to hold her and rock her, but she got through it with what is for her a mild level of anxiety, instead of off-the-charts anxiety like she had at her first official birthday party at the beginning of the month. So it was encouraging to see that she evidently was able to take her first experience and apply it to the second one to help keep her anxiety levels down. Way to go, Katya! ;-)

Chad LOVED that we tramped to a snowy football field to release 20 lanterns into the wintry night sky! Yes, it was VERY cold! Our van thermometer said it was 20 degrees when we climbed back in for the drive home, and I know there was wind which made it feel very bitter! Charity took Katya back to the van once the first lantern went up because she was starting to shiver, even dressed as warmly as she was.

Filling up the first lantern. Little K. and her parents are silhouetted by it.

And off it goes!

We felt very privileged to be invited, and it reminded me again how in this journey of medical challenges, we have been so blessed to meet so many other very neat and amazing families! Not only in the adoption world, but also families whose bio kids are struggling medically. We treasure the contacts we maintain with families we learned to know while at JHH.

Membership in the "club" isn't that fun, but I gotta tell  you that the MEMBERS OF THE CLUB just seriously are awesome.

We came home, tired but happy, picked up Kristina from her fun-time, and then got everyone into bed!

Today we had church and a potluck afterwards. Katya's behavior after church was pretty tough, and it was bad enough I'm not blogging details out of respect for her. Let's just say that we were all thankful that after we got home the rest of the day went better . . .

Tomorrow we are off to two different Dr. appointments for her. The anesthesiologist who was to do her general anesthesia post-poned the appointment for this week after learning that she has a mild, occasional little cough. He kept talking about how they can't do GA with a "coughing fit". Um, a single, tiny little cough 3 to 6 times a day is hardly a "coughing fit". But whatever, it may be a good call on his part. It changed our week's plans. We'll try to roll with it and hopefully she is well by the next time a scheduled slot comes around. I wouldn't bank on it if I were you, Mr Anesthesiologist though, given how sick she has been this winter! But hey, your call. Although . . . --well, maybe that is probably best kept for a blog post another day!

1 comment:

Claire said...

I so happy that Katya is learning to cope better with new situations! Here is a little computer game I think she'd like. You can light Chinese lanterns without getting cold. Click on the person with blue hair and then the lantern. http://www.fungooms.com/