Thursday, September 7, 2006

Frankie was admitted to the hospital this afternoon after registering a temperature of 102.6 while we were at clinic.

We sort of knew something was up with him over the last two days because he had a runny nose. Last night he had a low grade fever of 100.4, and since we were headed to clinic today anyway for a blood draw, in the back of my mind, I think I expected to not leave tonight. Although, you would think I would have packed more and/or prepared more for a longer stay, but yeah... that didn't happen. Thankfully, Frank left work early and brought the necessary items for our weekend getaway here at "Hotel Yale".

In any case, Frankie was doing much better this evening. His temperature is still hovering in the 101 area, but his spirits have rebounded and he's more active... more like himself.

I will update more as I know. We're just waiting on cultures and tests to come back to make sure he's not harboring some nasty virus.

Monday, September 11, 2006

First, let me acknowledge the men and women who defend our country, our freedom, every day. Without you, we would not be able to go about our daily lives with the ease and nonchalance that we do. Thank you and God bless you all.

Second, today is a day of remembering those who lost their lives five years ago. Five years... I cannot believe it's been that long. So much has happened in my own life, it seems surreal. Five years ago, Frank and I were just dating. Five years ago, I knew nothing of MPS III Type A. Five years ago, I was a really cool aunt, I had no bills, I had a good job, went out on the weekends and even during the week. Amazing how things happen that will drastically change your perspective, your priorities, in a matter of seconds. My heart goes out to the families who lost a piece of them that day. I pray for your comfort, your peace.

Third, Frankie's fine. Actually, he was okay a couple of hours after we were admitted to the hospital, but they have to keep him there on antibiotics until the cultures come back. Cultures take about 48 hours, so we knew we were there until at least Saturday. Thankfully, everything came back negative and we were discharged Saturday afternoon. But, one of his blood levels (FK) was funky so they asked that we come back to clinic on Monday (today) to have it rechecked.

Last, and certainly not least, we have to extend a HUGE thank you to a wonderfully generous family. THANK YOU, MATURO'S!!! It's a crazy story, but I'll try to summarize. While we were away at Duke for Frankie's annual eval in August, I received an email from Frank's cousin Sue (and a couple of calls). Her neighbors, the Maturo's, wanted to host a fundraiser for Frankie, but wanted to do it in a few weeks.

We had no prior knowledge of the Maturo's or why they wanted to do this, but after meeting them Tuesday, we were once again reassured that there are truly wonderful people out there. Phillip and Isabelle have two boys, Mathew and Dylan, (excuse the spelling if it's wrong). They realized how lucky they were to have healthy children and had made a promise to themselves that they would do an annual fundraiser for a needy child. This one would be the first.

Yesterday was the fundraiser. (It was a private function, so that's why no announcement on the site.) Had Frankie not been admitted on Thursday, we would all have been able to go. I would have loved for the people there to meet my beautiful boy, but I believe they understood why he couldn't come. I did get there toward the latter part of the afternoon and enjoyed some delicious food. They sent me home with SEVEN trays!!! I don't think we'll have to cook for at least a week! Phillip's sister, Susan, catered the event. (Check out Dylan's Deli on State Street in North Haven!!!)

It was such a beautiful day and the Maturo's were so generous in opening their home and their hearts to Frankie. We cannot thank them enough.

PS... if you live in the area and are looking for a car... go to Maturo Motors in West Haven! He has no idea I would even write that, so don't think it's a plug he asked me to do. They're a great family and I feel so privileged to have met them.