Jaime's Reading the Blog Again....

So, Jaime's back on an anti-eating kick again! UGH! OK, which one of you showed Jaime this blog? I think he wants to know what his CDH friends feel like with a tube in his tummy! :( Even his nurse was surprised at how little he actually ingested today (which has actually been going on since Sat). He's acting completely normal....beating the tar out of Jared and just overall being naughty, so I know he's not "sick." He's just Jaime being Jaime!
As for Mr. Jared...he went to the hematologist today. We'll be back to twice a week infusions! :( He's doing fine, the problem is, he had a knee injury in April that took a larger than normal amount of Factor to heal. The dr. said that if he was on prophy infusions, it may not have been as bad. Our goal is to preserve Jared's joints now...the more bleeds he gets now, the more arthritis he'll have in the future. While ice skating would NOT be their sport of choice...they get it and told us to infuse him more. Tom is going to be trained sometime this summer on how to start IV's. We also talked a little bit about Jaime...Jared's hematologist mentioned that he thinks that Jaime should be on prophy, too. This would require Jaime to have a port though because he's so little. Jaime has his hematology appointment in Cincinnati next month, so we'll see if Jaime's hematologist feels the same way!
We're looking forward to our trip to Cincinnati. I have the honor of hosting a CDH picnic with Bev, Anna's mom (LCDH) while we're in Cincy. We've invited many of our online CDH friends to join us. Can't wait to see everyone again and meet all of those that we haven't met yet. It will be a day of fun and sharing of our stories. Celebrating both the angels in heaven and the ones here on earth! I was talking to Bev and Jeanie (Ryan's mom, LCDH) and I told them that between the 3 of us, we have 3 different generations of CDH'ers...all cared for at Cincinnati Children's. It's fun to compare how different the treatments were for all 3 of the kiddos! We also know that there will be at least one newborn Cincy NICU grad there, too! If you've been invited, please let us know how many people will be in your "party." We're trying to get everything finalized by the end of this weekend! Also, please note that we have a room block at a local hotel! If you're interested in coming, please email me and I'll be happy to pass along the details to you! All those affected by CDH are welcome to come! :)

A pic from our last mini Cincy CDH Picnic in 2010, hosted by Bev: All Cincy NICU Grads-L-R: Colt, Ryan, Jaime, Ethan and Anna.

 Final note, because some of you have asked....yes, I DID accept a new position within UH. If you recall a few months ago, I wrote that I accepted a position. I did accept it, but then I wasn't able to commit to the hours with all that was going on with Jaime, so in the end, I declined it! While I absolutely LOVE my current position at UH, I felt the need to find one that would better work with Jaime's medical needs. So, I took a position 2nd shift at a local UH hospital. I'll be working only 7 minutes from home and a 3-9 shift (rather than 45 minutes away on day shift). It will be perfect for taking time to have appointments with Jaime....or to attend his therapy sessions. So, I will be starting at the end of July. While leaving will be bittersweet for me, it's something I have to do for my family! I'm looking forward to my new chapter at UH and am forever grateful that I can stay with the company that I have enjoyed working for over the last 12 years!

That's all for today's update....whoever told Jaime to read the blog....please tell him to stop! I really don't want to send him to the OR again for another major surgery! Thanks!
Until next time.......