Amundsen House of Chaos

Let's face it, when you have a kid who survived a stroke, life is always going to be a little chaotic.

Monday, May 19, 2008

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I am continually amazed at what other people are willing to do for us! I can't express the gratitude I feel to all the generous people who helped us in our quest for therapy equipment for Colby! We were able to purchase the swing and some other things that we needed for him. The remaining amount is being put into a fund to go towards another round of Hyperbaric Oxygen treatment for him. It is insanely expensive. There are only 13 reasons that insurance covers it and of course a basal ganglia infarction is not one of them. So it costs us $9000 to do 40 treatments for him. We were able to do one round of 40 due to the generosity of an anonymous person (people????)from our ward. The difference is Colby has been amazing to watch. He can open up his hands when he wants to or is not having a muscle spasm. His hands were always clenched before. He can hold his head up and is able to relax on the floor and watch TV for up to 2 hours with out me holding him. He used to scream each and every time I put him down but now he only does when Riley tries to climb over him or pull out his feeding tube. His lungs have cleared up tremendously. We were able to send back his oxygen concentrator and O2 monitor which is quite nice. He hasn't been sick (knock on wood) since before we started doing the oxygen therapy. He got a cold of pneumonia every time we went to the doctors office before we started this. His digestion has improved and he has gained weight. He doesn't look like he is literally starving any more. He used to just be skin and bones. We hope that with a second round he will get his speech and a stronger swallow back. He is so close to talking again that it is frustrating. I wish those nerves in his brain would just work themselves out and find a new path to connect with. It is frustrating to hear about other kids with brain damage gaining back so much of their abilities when we are still celebrating the small things. He wants to walk so bad my heart aches for him as he watches the kids at his preschool play and run. He tries so hard to talk and gets so frustrated when I don't understand him. I can't imagine the pain and anger he feels at not being able to do the things he used to do. I pray continually for him to regain his speech but I know that all things come in the Lords time and that as his brain heals he will gain what he is supposed to gain back again. OK enough of the sad things in life. This was just supposed to be a thank you to all those who signed up for the money exchange and enabled us to get Colby some therapy equipment. Again you have my deepest gratitude and words cannot express how thankful we are!

Here is supposed to just be a picture of Colby on the first day of school. Apparently I took a video so most of it is the camera in my hand upside down. Just watch the first part if you want. Obviously I am technologically impaired. =)


At May 20, 2008 at 10:08 PM , Blogger Stacy said...

Wow Erin. I so hope the treatments will do more to help him improve. It is amazing to me all that you and John and your kids deal with and have dealt with these last 8-9 months. You are an inspiration. Keep up the good work and the positive attitude.

At May 22, 2008 at 9:47 AM , Blogger Angie said...

I think I threw up a little bit! ;) So glad that Colby is making progress! Hang in there! You are doing an amazing job.

At May 27, 2008 at 8:05 PM , Blogger Mandy said...

Wow! I watched that video of Curt and all I could think of is wow. It is just amazing. Please let me know what Landon and I can do to get the word out for colby. I would love to help you in any way possible.


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