Tuesday, March 5, 2013


So let's get it out of the way... After realizing on-line Weight Watchers just wasn't going to cut it for me, I joined Jenny Craig. My life is so crazy right now, I really need something very structured so I don't have to make any more decisions than I already do. After one week, I lost 3.6 pounds. I had lost a few before so total loss is 7.3. Current BMI - 33.7.

Mackey had his second birthday a few weeks ago. The poor guy really gets the short end of the stick. It was a low key event at our house but he had a big celebration at daycare. He was thrilled to get presents so I don't think he minded not having a party. I will write a post strictly about Mackey soon. He is growing up so fast and I want to make sure I record some of the wonderful things he does before I forget.

Some of Seamus' symptoms seem to be changing so we spent 7 hours at CF and GI clinic on Friday and got x-rays and an ultrasound done. The concern was he might be developing ascites which is fluid build-up in the abdomen because the pressure has increased so much in the liver. The doc called us Sunday night, which is usually not a good thing, to tell us there was no sign of fluid but he has lots of trapped gas and they can't figure out why. He had some stool but isn't obstructed. He constantly looks like an 8th month pregnant woman. We also got definitive proof of the cirrhosis which up to this point they had assumed but hadn't proven. This doctor has only been following Seamus for about a year and I think he's finally starting to understand the uniqueness of the situation. He admitted that Seamus is "a mystery" and his liver (and GI) disease is not following the path of most CF patients. We had another long discussion about transplant on Friday and he still believes Seamus isn't ready but we are concerned about waiting too long because he could become too sick to be eligible.

The best part of the weekend was meeting with the Make-A-Wish volunteers. They had lots of questions for Seamus about his likes and interests and really listened to his request. He has a very specific request so we are hoping they are able to do it. He makes to go to the Activision offices where they make the Skylanders video game and create his own character called Man-atee. It's half man, half manatee. The face will be his face. He's come up with all the powers he has and whole story line. So hopefully, he could actually work with the designers to create it and incorporate it into the game, at least a version just for hem. My biggest concern is they wouldn't fully understand what he wanted and would just send us out to meet with the designers who would give us a tour and just show him how they work. I think he would be very upset if we went all the way there but he couldn't make Man-atee but it may be too much work for them.

He has a second wish, just in case, which is going to the Disney resort in Hawaii. Obviously, James and I wouldn't mind if that wish was granted but he really has his heart set on the first one so I hope they can do it or at least some comparable version of it.

So we're still waiting for culture results and more liver blood work to come back but currently Seamus is feeling good which is the most we can ask for. I'm hoping we get that huge snowstorm everyone is talking about so we can all stay home together and snuggle.

1 comment:

Rick said...

Thank you for the update. Please don't think too far ahead like I have done in the past. The more specific our expectation, the greater chance we have for disappointment. The future has held experiences beyond my wildest dreams. Like having a namesake. I did not know what my family was thinking and planning. It was a wonderful surprise (and I am still thrilled about him sharing my name. I love living in the moment because I have the opportunity to enjoy life to the fullest, just as it is!