Some minor bumps in the road

Hi everyone--just wanted to give you a brief update.

I just got off the phone with Rob, who is on his way back from the hospital with Grace after her weekly infusion. I was unable to go because I am actually quite sick myself, though on the road to recovery. We had some minor problems at the hospital today.

Grace's infusion typically takes two hours. However, if the patient tolerates the medications well, the staff gives the parent and/or patient the option to speed it up to 1 1/2 hours. Because Grace had tolerated the previous infusions well, and because we are trying to get on the road for our trip to the coast, Rob went ahead and told them to speed up the drip. Unfortunately, Grace did not tolerate this well at all. She felt quite sick and lightheaded, and vomited twice. I just spoke with her, and she's doing better, but still not feeling too great. Lesson learned--take the whole two hours!!!! Don't try to rush it!

We are waiting to see how Grace does before we hit the road. The medical facilities in Westport are practically non-existent, so I want to make sure she is well recovered before we head out. Today is Rob's birthday, and we were hoping to hit the new Cabela's on our way, but we'll see.

In related news, Grace had an appointment with her rheumatologist earlier in the week. The lesion is looking a little better, and has actually shrunk by 1mm, which is great news. Grace has also only gained 1 lb, which is further good news. Though she is retaining quite a bit of water (another side effect) which makes her appear like she has gained more. At this appointment, I also learned to give her the methotrexate shots in preparation for when we can cut back on the steroid treatments and give her only the methotrexate at home. The nurse let me practice on her (Grace wanted no part of it), and I am proud to say that I am a natural. The nurse told me I missed my calling, and should have been a nurse!

The timeline for the treatments is also under scrutiny. Grace's liver enzymes were slightly elevated this week. Still within the normal range for a child receiving her treatments, but a little on the high end. She is sceduled to receive a treatment next week, but then will likely be taking a week off. We'll let you all know more as we find out additional information.

Thanks for your good thoughts. We truly appreciate them.

On a selfish note, I'd like to take a minute to wish Rob a happy 39th birthday. I always knew that he is a great husband and father, but he has really shown that over the last few weeks. He's the best.

We'll update again later.

Love,
Sabrina