Kyara Dzenis

Kyara Dzenis

Monday, September 28, 2009

2 Weeks In...

Where to start... sometimes I am not sure. I suppose the easiest thing is to start where the last entry leaves off. That makes sense...right? But sometimes, one is too excited or their heart is too full to begin so far back. So... I am going to start with the exciting news first.

KYARA SMILED A REAL SMILE ON SATURDAY!!!! Thank you, God!! This smile filled my heart like I can't explain. It was a real smile, not one that I was questioning "was is or wasn't it." It was a true smile. If only I could have gotten a picture of it! Here is the cruel part of not capturing the smile with a picture... she has not smiled like that since. Although I felt like I would never be able to forget what it looked like, as if the smile was etched on the back of my eyeballs, it is slowly fading away. I know I saw teeth, but did I see dimples? I am not sure. I can't see it in my mind as clearly anymore. But, I know it was a beautiful smile and if she can do it once, she will be able to do it again. I will wait for that next smile and ALWAYS have my camera ready! It is amazing, just when I start to feel like things are not progressing, God provides something to say "Keep positive, keep faithful, and keep loving."

Since Kyara has started the suit therapy, she has begun to move her right arm more and tonight she moved her right leg to bend her knee while lying in Gunars' lap. She seems to have a bit more control in her trunk and is holding her head up more often. I see improvements everyday, so I am thankful that we decided to go forward with the suit therapy.

Gunars and I took a nice trip down to Gainesville, Florida for alumni weekend for Gator Soccer. We got to see the Gators play a couple of soccer games and see the Florida vs. Tennessee game. It is great to be a Gator! We stayed with Gunars' old roommates from college and had a great time talking about "the old days!" It was also great to catch up with my old teammates. They are so awesome... the alumni had a tailgate fundraiser to help Kyara's medical costs and we GREATLY appreciate the donations. I am hoping to get her a special tricycle with the money for Christmas. I am told that it takes about 3 months to have one built, so I need to get on that!!

Skylar has lost her first top front tooth. She yanked it out by herself yesterday, and the silly toothfairy got caught up in traffic last night and didn't make it here before she got up. Hopefully the toothfairy will get on the ball tonight!

Kassey is as crazy-fun and stubborn as they get. She looks up to Skylar and wants so much to be like her big sister. Lately I have been catching her in Skylar's bed. This wouldn't be such a big deal, except Skylar's bed is 6 feet off the ground (she has a loft bed)! She gives lots of kisses to Kyara and takes good care of her... rubbing her legs with lotion, showing her boo-boos, and letting me know when Kyara is crying. She loves both of her sisters very much.

We have many things to be thankful for. I am going to continue to pray for more success with the suit therapy and for help knowing what to do about schooling for Kyara. Thank you for your prayers, comments, and best wishes.

Tuesday, September 15, 2009

Suit Therapy Begins!!

Kyara started suit therapy yesterday. She is also doing some hippotherapy (riding on a horse) at the same time. Our computer is sick (crazy viruses... how is it possible for a nonliving thing to get a virus???) so I am working on Gunars' laptop. I hate writing on it, so I am going to keep this short. Thank you all for keeping up with Kyara. She means the world to us, and although I am not posting as much, we are still in need of God's grace to help Kyara recover. I pray this suit therapy is going to get us on a path towards recovering some of her strength and function.

Thursday, September 3, 2009

The Stander is IN!!

Kyara got her stander today and even though it is not perfect, she was very content in it for about 30-45 minutes tonight! That is a LONG time for her to be content in any position! YEAH!!!

I also got her stroller today. I ordered it last week after lots of researching and calling size therapists to make sure it would be a good fit for her. Well, I was totally excited about getting it. I spent 45 minutes putting the thing together (with Kassey's "help") and Kyara is too big for it. I am crushed. I really liked the stroller, but I don't think its a good idea to keep it if she will only be able to fit in it for 6 months. What a waste. I guess I will be sending it back. Gotta find out shipping costs. Yuck!

Kyara is also borrowing a Pace Gait Trainer from her therapist. I will post a picture of it soon. WE are trying to encourage her to move her legs to walk, but it will take time.

Thank you for the suggestions on the dry skin. I am going to try them and see what will work. Our doctor also suggested anti-fungal soap. I don't know what that is, but I guess I will find out.

Have a wonderful Labor Day Weekend!

Tuesday, September 1, 2009

Ready, Set,...Wait

We were mentally all set to start suit therapy next week, but unfortunately, we are going to have to postpone one week. We will start on Sept. 14 instead of Sept. 7. Really, this is not that big of a deal. It gives insurance a little more time to get their act together and approve at least part of the therapy.

Kyara is still pushing along. Thank you, Mrs. Higley, for the advice about the Caldesenne (sp?) Medicated Powder. It has worked wonders for Kyara's nasty yeast rash in the folds of her neck. Although they are not gone yet, they look a hundred times better than they did! Now I have to figure out what to do with the dry, red, patchy, flakey scalp. Any ideas there are greatly apprecited. I have tried T-Gel Shampoo and baby oil then combing it out. So far, these have not worked. IF you have suggestions, I am open to them!

We went to Villa Rica this morning for a pt evaluation for Kyara. It went well. The therapist are very nice. I am really looking forward to getting started with this suit therapy and see what comes of it. I pray for good results!