History

Saturday, February 7, 2009 4:32 PM CST

Hi!

I don't have a lot of new info, but just a few various tidbits. Kate is about in the same condition as the last update, with the frustrating subtraction of the "no vomitting". She smashed her finger really really badly in a drawer, and had to have it drained and then the doctor put her on amoxicillin just in case it was broken. That always messes up her stomach and she threw up three times during that week. But, her appetite is still good and her finger is looking better, although her nail is black and will probably fall off soon!

She has another loose tooth, one of the center top ones. I was planning to take her to the dentist about it because it's obviously "dead" and is becoming discolored, but now that it's loose I'm not worrying about it.

I think all of Kate's IEP (individual eduction plan) is in place at school now, and she's getting OT and PT, a special class with an audiologist for hearing impaired kids, adaptive PE (she bowled a STRIKE yesterday!), and her teacher wears an amplifying device in the classroom (not my idea - that was the school that did that of their own accord - they are great). Kate LOVES school so much. They went outside to play for recess for the first time since school started and Kate, with the help of her dear sweet teacher, played on the slide and the swings. She got her midterm progress report and got good marks on everything, although she's behind on her sight/high-frequency words. Her short term memory problems really show up in these areas, and we have been reviewing these same blasted words for two years now. They are just now starting to click, though, and she only has three that she consistently stumbles on. She refuses to pray about this, but happily prays for me to "make more money" (probably so she can buy shoes) so please pray for her!

She's continuing OT every week outside of school, and PT every other week, tutoring once a week, and her adaptive dance class once a week. Her recital was wonderful and you can see pictures of it on the photo page. She will have another one in the spring and also will appear at Panoply at the Choreography competition. I wish we could squeeze in the pool therapy too, but whew! It's enough now. Thank goodness for lovely friends who still bring us meals, we'd never make it otherwise on Monday nights!

As I mentioned, Kate bowled a strike yesterday, and today we went ice skating, then she came home and rode her bike from our house to the Greenway, a little down that way, then back up to the new park, around the ponds, then all the way back home. Now she is writing all her Valentine cards. A little girl at the ice skating rink said "is she special needs?" which is still something that's difficult for me to deal with, but at the time, I was hunched over holding up a 30 pound child who cannot walk and yet is standing on a sheet of ice in hockey skates. So I just said "well, she can't really walk by herself."

The trip I mentioned last update was actually to England, and I swear every time one of us goes out of the country someone goes to the hospital. Wen got a stomach bug and threw up all one day and I just knew that Kate would get it and that's an immediate trip to the hospital. But by God's grace and a quick quarantine to Pop and Gran's, she never did. Wen got over it quickly, too.

Wen is busy playing baseball for both his school and a travel ball team. I can't keep up with his practices, but Darryl does.

We took Kate to see her metabolic/genetic doctor in Birmingham week before last. This was the first time that Dr. Rutledge has seen her awake - she only just met us this summer in the hospital. There wasn't any real reason to go, but I wanted to establish a relationship between then and then setup regular visits (they'll be yearly). Dr. Rutledge said that she would have NEVER thought that she would see Kate walking into her office and sitting in an exam room. She also commented on Kate's strong personality, and we just said "we told you so. [in the hospital this summer]" She also said something very interesting that we had never considered: that her bone marrow transplant is a real positive for her mito condition. Of course I knew that not having to do transfusions and chelation, and not having high iron was probably worth the transplant, but I always have had the idea that perhaps the stress of the transplant and the chemo drugs might have accelerated the degeneration of the mito condition, since it was after the transplant that Kate became so ackward and skinny. But Dr. R says that Kate now has an entire circulatory and immune system that is not DNA-deficient due to her mitochondrial condition.

Wen also saw his endocrinologist week before last (I came home from the UK, went to Birmingham, and went to Nashville within three days). He has grown 6 inches and gained 20 pounds this year! He is exactly the same height as me but I will not mention who weighs more.

Wen will be getting braces week after next. He's very excited about getting that one way-back tooth back up where it's supposed to be. Perhaps Kate's prayer for me to "make more money" is timely!

Love and blessings to all of you dear people who think about us, pray for us, and help us manage to have nearly normal lives. We honestly could not function without you!

Blessings, Lesley

Saturday, January 10, 2009 1:34 PM CST

Happy 2009 to Everyone!

Just to let you know how Kate is doing, here's how her day is shaping up today: she woke up this morning about 7am, and she and Darryl and I went to Gibson's (Wen is off hunting), then to Target, where she walked all over the store using her walker, then we went to the gym, where she played in the kid's center and when I picked her up she was walking around unassisted holding a play doll carrier (although she did take a big backwards tumble). We went and got our nails done - she's got alternating orange and blue nails to match her new Auburn top Alice Ann sent her. We've picked up a couple of friends to come over and play for the afternooon now. Tonight we're going to go out and eat then enjoy the second performance of Kate and her Dance Your Dreams class in the Evening of Dance at Merrimack Hall.

Kate feels good, loves school, and is very very happy. She walks very well with her walker, a bit faster than she used to with her canes, and around the house walks unassisted as she has lots of walls and furniture to help out. We've seen some improvement in her strength and coordination in her hands, although she still favors her left hand and tires easily. She's eating very well, and hasn't vomitted since well before Christmas.

It's still a lot of work to care for her, of course, since she can't completely dress/undress herself, and needs lots of assistance doing things that other kids easily do on their own. We have to spend a lot of extra time on schoolwork/reading with her, and she's still going to therapy every week and tutoring also. But, like I said, she's very happy and doesn't seem bothered by any of it.

She got lots of new Wii games for Christmas and other things that are good for her physical/mental development. Darryl and I went down to the beach for a few days last week. I've never been to the beach in the winter, it was great - I can see why snowbirds move south in the winter. The kids went to Mom and Vance's and Wen killed his first dear - a 100lb 4 point. He's very proud and back at it this weekend.

Darryl and I are getting back into some sort of routine, although I just got the Christmas decorations down (but the regular stuff still isn't back up and we'll have empty bookshelves for a couple more weeks). The lights and wreaths are still outside, although we don't turn them on. Darryl and I have managed to go to the gym 5 times in the last 6 days so I think a celebration is in order.

I'm going on a business trip Monday through the beginning of next week, so say lots of prayers for us all! Darryl is very capable but it's never easy to care for kids on your own. We have many lovely and generous people signed up to help with food and medicines.

I might manage new pictures here on the caringbridge site, but if not, check out lesleyburnette.shutterfly.com (no www). You can see our pictures of our hike in the Sipsey Wilderness. Kate did *great* and did a lot of walking on her own, holding hands with one of us.

Also, the DBA Foundation has a new website - www.dbafoundation.org

Thank you to everyone who keeps us in your prayers, we definately still covet all the intervention we can get!

Blessings, Lesley

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