Friday, June 17, 2005

A Picture Is Worth A Thousand Emotions



Look at that beautiful smile. It's been so long since I've updated, and so much is going on - that it's hard to find the time. But let's start out with the biggest news of all....

Tomorrow (Saturday) will mark 1 week since Kyle gave up oxygen during the day. He only uses it now to sleep, and minimally at that. I know this may only be temporary, but it's a huge step in the right direction. I get teary-eyed just looking at him. He's so happy now!!! We went to gymboree last Tuesday, for the first time the kids didn't have to "be careful". He was just another baby (cry).

I can't tell you what it feels like to pick up my child, free of the wires and tubes and all the things that restrict our movement. I remember hearing Karl upstairs with him last Sunday, we were getting ready to leave - and he was running through the rooms and halls with him. It's so hard to explain these things to people that may never truly understand the emotions... But I must imagine that it's like seeing your child take his first step. This is the third biggest day of our life with him. First being the day he was born, the day we first held him (7wks old), and now this!!!

As for his development, otherwise... Things we moving forward, until his Physical Therapist cancelled all of his sessions for the next 8 weeks. To say that I have been disappointed in the lack of proper therapeutic attention that he receives is quite the understatement!!! So, I'm on the hunt for more therapists again, and keep coming up short. We do have a new speech therapist evaluation next Wednesday, so I'm VERY excited about that. Kyle's last therapist dropped him when he went in for his g-tube, and couldn't get him back on the schedule after that - everyone since has been booked as well - very frustrating when you have a child that is orally averse.

Gymboree is the only "therapy" he is getting, and that really only counts as developmental therapy - but it's better than nothing. I'm hoping some spots open up after the holiday.

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BTW - we're building a new house... If you know someone in the market for a gorgeous, 1897 restored Victorian, 5br, 1.5 ba up/1ba in basement, full depth basement, and a brand new custom kitchen w/granite, etc... Let me know. Our new home will be done in Oct, current home goes on the market after the 4th holiday. Hint, Hint - LOL. More to come on this in the future.

6 Comments:

At 6/17/2005 11:03 AM, Anonymous Anonymous said...

He is growing up so fast! That must be awesome to be wire free!

 
At 6/17/2005 11:32 AM, Anonymous Anonymous said...

Katra, He's so beautiful! He's going to make it past all of these hurdles, you just watch! Congrats on your new milestone!!! yay Kyle!!!

 
At 6/17/2005 6:53 PM, Blogger RB said...

Hi! I have been reading about your little guy for months and am so happy to see that he is doing well! Www.Rbelle.com

 
At 6/21/2005 11:39 AM, Anonymous Anonymous said...

Katra-

Thank you so much for sharing Kyle with all of us. He is a remarkable little guy and following your family's story has been very inspiring to me. Keep the updates coming. Congratulations on being wire free. I love all the pictures.

 
At 6/30/2005 10:08 PM, Anonymous Anonymous said...

Katra, I have looked for you on twinstuff but I don't think you are there often and I happened to have an old post and I was able link up with your blog and see how wonderful Kyle is doing. I am so excited for all of you, I have goosebumps and tears in my eyes. Kyle is absolutely beautiful. Best wishes and take care.

 
At 7/01/2005 8:44 PM, Anonymous Anonymous said...

Katra that is so wonderful that Kyle has his tubing off!!! YAY Kyle!!! I am so happy for your family that things are looking brighter. Looking forward to July's update.

HUGS
Kiley

 

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