Thursday, April 8, 2010

A long week

It seems and feels like the last few weeks have all run into each other, we are still struggling with this nasty respiratory infection (both Kyle and I have it) Alex had a fever on Tuesday....strange...came on all of sudden and then was gone by the am....crazy, I'd say we've been more sick this last month then all winter. I think the steroids that Kyle and I are on are getting us both down and it's been a frustrating process.

We got to meet with Kyle's entire team on Tuesday, pretty much spent the day at the dr's office. But it was good, we got more info from Columbus and got the opinions from the team that knows Kyle best. Have I mentioned my love for Kyle's GI dr lately... Amazing person, amazing doctor. Anyway, we are keeping a very close eye on some of his labs, little concerning this week but we will know more on Monday. As for our meeting with the surgical team, I think that went pretty well, we were surprised by some of the recommendations and not prepared for them but in the end I think it will be the best for Kyle. We are looking at doing both his surgeries in the next month at the same time. It's a good move for Kyle but will make the surgery and recovery much harder. But it can be done all at the same time, so while it will be a hard and difficult surgery our sweet boy will only have to go thru it once.

Both Mark and I have that sense of dread right now, while we know we it has to be done it's still so heartbreaking so think about. I feel like we just went thru this in November and yet this surgery will be more than that one...I'm petrified. I look at his sweet face and it kills me to think of him going thru more....Our baby who has endured more than I will in a lifetime will have to be once again put thru so much. It's hard to wrap our brains around it. None of it makes sense to me, yet in the same moment I'm so thankful, grateful, overwhelmed that we are still fighting this battle....



Weerock said...



Tisha said...

Your are truly one of the most amazing mom's I know. (((hugs)))

Anonymous said...

Kate, I'm so sorry for the sense of dread you are feeling, you are right to feel that even though you are making the best decision for Kyle. It is so hard to put them through anything else. Hopefully getting both done at once will help him overall.
I am glad that you have a GI dr and team you can trust and talk to.
I am also sorry that you are sick, I hope you feel better ASAP.

Jessica said...

Thinking of you. xoxoxo

Lauren said...


I can't even imagine how long this week must be for you guys. When I think of how long ago SU was and all you have been through just since then I am overwhelmed for you and truly amazed by the unending fight you and Kyle bring to your journey.


Debbie said...

So sorry you have so much to deal with and to anticipate for your little guy.
I is not fair, for him or you as parents! I know the ache of watching your child suffer and anticipating what they don't see coming...I am so sorry.

Take care and big hugs your way.