Update

It has been a long time since I have posted but we have been busy and as the saying goes, "No news is good news."  Kyle continues to do well.  He is gaining weight and seems to have lots more energy.  We continue to have monthly cardiac caths and biopsies as well as the IVIG.  All is going well which is good.  Spring is a busy time of year for us and we all have lots going on.  Kyle is enjoying being outside and being Kenton's side-kick.  It is good to see him have so much energy.

It is becoming easier to not dwell on where we have been in the last year and to try and enjoy life again.  I will probably post less on this blog unless things take a turn.  I will still use it for medical updates and as I am able to help more with the blood drives and the organ donation, post that information here also.  

Liz, thank you for your comments.  I want to get your email address, I'll try to call you sometime to get it.  I think about you often and we hope to see you again also.

We are back home and doing well

Kyle was released from the hospital on Saturday morning. He heart rate has remained stable and I am praying constantly that it continues to remain that way. He and I drove back home Saturday. The roads weren't the best and we heard that I-70 was closed for a few hours but had opened back up by the time we got to Columbia. The interstate just east of Kansas City and the roads up to north of St. Joe were bad but we took our time and made it safely.

On Sunday the Make a Wish foundation people came out to the house to visit with Kyle. Kyle wasn't shy at all and was very excited about having a "wish" granted. He seemed to sleep better Sunday night, at least better than I did. This last visit to St. Louis was really hard.

Good news- Jessica got one ratings on both of her entries at speech contest and will now be going to the state competition. We are so proud of her!

For now we hope things remain quiet and routine for us. I have to take Kyle down to the hospital for labs in the morning and then to school before I go to work. We don't go to another doctor's appointment for several weeks if things remain quiet.