Our Little Neatfreak

We never would've thought it possible for a neatfreak to come out of this family, but it appears we may have one on our hands! Gantt puts everything away! That's normally a good thing, but he puts EVERYTHING away, and in such random places that it's hard for us to find things! We're not sure if he's being neat or if he just wants to hide things just for himself. Here are some of the things we've found:

Toy in the kitchen cabinet

Brett's inhaler and the cinnamon sugar in the drawer

Anakin Skywalker in Mark's sock drawer

Caught him in the act this time!! Good thing, because this is Brett's special feeding therapy spoon.

Rearranging the refrigerator to his own liking

We love Gantt!

Sept 8 Clinic Visit Results

Brett saw his GI doctor, pulmonologist, and dietician this past Wednesday at UNC. He gained 60 grams in 2 weeks. This is less-than-stellar growth; however, in the CF world, sometimes just not losing any is counted as a success. We were slightly encouraged by the weight gain, and no major changes were made to his feeding regimen - other than always trying to get him to eat more.

His pulmonologist thought his lungs sounded fantastic- in fact, the best he thinks he's ever heard them in Brett's entire life. This is great news! It has been nice to enjoy a couple of weeks of wellness. I thought it was going to be a relatively non-invasive visit, but I forgot about the usual deep throat culture and the bloodwork. Always bloodwork. They especially wanted it this time since he seems well. This helps to have something on file with which to compare "sick" bloodwork. We've never really had that before since he's never really seemed completely well. Since Brett does not have a Broviac or a PICC right now, he had to have all the blood taken peripherally, which this time meant 2 sticks. The first in his arm clotted off, so we had to start all over again - restraining him, using the tourniquet, finding a vein in his hand, getting access, then seeing if the blood would flow. It did the second time, but veeeeeerrry slowly. Thirty minutes and 7 vials later (small vials), we were finished and could go home.

The clinic visit was 4 hours long, but went well since Brett is feeling so much better.  This period of wellness may be short-lived, though, since his initial bloodwork results showed that his IgG level is plummeting again. His last infusion was during his last inpatient visit - the beginning of August. The high level of IgG may even be what has caused him to be able to stay well for the last month or so. But now that number is less than half of what it was even 2 weeks ago. At that rate, he would probably get sick again soon and have another hospitalization. Right now they are looking IVIG therapy**.

Should we and the doctors decide on going forward with this, there will be logistical issues facing us - frequent use of a blood product, hospital admissions or "outpatient" hours-long visits, and probably most importantly, venous access. It can be done peripherally to start off with, but that is of course not ideal for the long-term. They are thinking without the frequent IgG infusions, he'll probably be sick and hospitalized a lot of the winter. For now we will be seeing his immunologist soon, and will be discussing access options with his surgeon. So long for now!


**(Intravenous immune globulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months.)

Hello, September!

I can't believe it's already September 8th! And I can't believe it's been 11 days since my last post. As usual, our family has been very busy. I don't enjoy being very busy. I try to protect our calendar fiercely so that we can enjoy downtime and freetime, and so we're more flexible when our plans have to change. However, it is truly amazing how the calendar sort of seems to take on a life of its own.

Is that a nugget you're eating?

Between Rob's sometimes crazy work/travel/hockey schedule, Mark's school and homework schedule (special days, parties, field trips), various appointments (for all 5 of us), therapies for Brett 3 days a week (they come to the house, yay), things can get pretty busy at times. And that's not even mentioning the daily therapies that must be performed on Brett - those are a given.  Mark is only in one extra-curricular activity, soccer, but it takes one evening and every Saturday morning. Also, in my quest to do something good for myself, I've committed to an exercise class called "Boot Camp" 2 days a week and tennis lessons one day a week. I'd love to play tennis more - I'm really enjoying it - but right now I feel as though I'm lucky to be even doing it at all. Without my "assistant," Erica, I definitely wouldn't be able to. We live by the clock, which although can be binding, in other ways it's freeing to have that "flexible routine" because everyone knows what comes next and what to expect. Now if I could just get laundry on a schedule and dinner on the table...

As for Brett, he is doing MUCH better. He looks and acts much healthier, and many people have commented on it. It seems as though he has gained weight, but we'll see for sure at our appointment today. At the last clinic visit we decided to advance his feeds and we made a few dietary changes. He did end up testing positive for enterovirus and rhinovirus (common cold). Look for a post tomorrow regarding the results of today's clinic visit.

OK, SORRY ABOUT THIS FORMATTING CRAZINESS!!! It's happening when I text my posts. I'll fix it soon!!