Friday, March 7, 2008

CLICK HERE FOR LuDAL FUNDRAISER INFO-.pdf file

Short update here: Frankie was admitted to the hospital yesterday. He started the vomit/diarrhea thing around 5:30am Thursday. I gave him his IM shot of his stress dose steroid and then we were off to the hospital. Fortunately, we already had an appointment scheduled. But, it wasn't until about 3pm before we got to 7W.

Yesterday, after getting the shot and fluids in him, he seemed to be much better. And, the original plan was to have us stay 48 hours. But, this morning, at around 4am, he started gagging and having worse diarrhea, so now we're not sure. When we see the doctors today, I'll update more.

Until then, please say a little prayer for all of the boys and girls who are in need of medical care. Hug your kids and tell them you love them!

PS... Don't forget about the jewelry fund raiser!! I kept that info following today's update! Thank you so much!

Tuesday, March 4, 2008

UPDATE: Please keep in your prayers a little girl, and friend of ours, Kacey. She had gone to Boston recently for her transplant and has since relapsed. Unfortunately, this is the second relapse in 7 months. Please keep her and her family in your thoughts and prayers. Visit Kacey at http://www.kaceyrose.com/

Frankie is doing well (knock on wood).

Some nice news is that he is really enjoying school. He now is going four days a week for three hours each day. He runs into the school and really works hard the whole time.

On a side note, we wanted to thank everyone for continuing to follow Frankie through his journey. We seriously couldn't have gotten through all of the ups and downs without our family and friends, not to mention their unyielding support.

My sister's friend, Stacey has generously set up a fund raising event, which actually just passed this weekend (March 1), but it is still going on until May 8th. She sells Lia Sophia jewelry, and it's absolutely beautiful. If you're interested, any jewelry you purchase by March 8 (directions follow), a portion of the money goes directly to Frankie's COTA fund. If anything, just check out the jewelry... it really is beautiful.

Directions on how to order jewelry to help raise funds for Frankie:
Go to: http://www.liasophia.com
Click on "Our Jewelry" to the left of the screen
Choose a catalog
To purchase, click on "How to purchase" located in the top right corner of the catalog
Go to the BLUE box and search for the fundraiser by entering entering "Share" in the Hostess first name and "Joy" in the Hostess last name boxes.
Again, this fundraiser is only going on until March 8th (Saturday).

The other fund raising event that is going on is the one that my brother-in-law, David is organizing. That's the sports memorabilia silent auction/dinner at LuDal's in North Haven, CT. The event is scheduled for Sunday, April 6th from 4pm to 9pm. Again, it's a four-course meal for $125pp. The sports memorabilia is being brought in by Steiner Sports (NYC). Should you have any questions and you'd like to attend, please contact Dave at dfg@efpnow.com. We'd love to see you there!!!

Thursday, March 13, 2008

CLICK HERE FOR LuDAL FUNDRAISER INFO-.pdf file

I'd like to write that we're still here at Yale, but that would sort of be misleading. You see, we were discharged on Sunday afternoon with Frankie still accessed (needle in port) so we could continue to give him his antibiotic TID (three times daily) through till this Sunday.

However, since my little one hates to make anything dull... we got home around 3pm on Sunday, March 9. We gave him two doses of Vancomycin (one at 6pm and one at 2am Monday morning) without problem. At 4am Monday morning, I hep-locked his port and went back to bed. At that time, Frankie was sleeping nicely.

At 4:30am, I heard him cough. The hairs on the back of my neck stood up. "Here we go again," I thought. I lay quietly in bed, waiting for more coughs. Sure enough, he was coughing and vomiting. Frank and I got up and tended to our little one.

A call to the doctors followed shortly thereafter. We spoke about whether or not he should get the shot now, which we agreed upon. So, by 5:30, he had has his shot and we were packing our bags for our most definite admission to Yale, not more than 16 hours after we left. But, protocol had us go to the ED first, of course. Thankfully, he was already accessed, so they were able to get fluids into him much moore quickly.

So, yes... we're still here, but with a very short trip home in between. And, you can imagine my hesitation yesterday when the doctors said we could go home. I asked for at least one more day. They obliged. Not only because I wasn't sure he was 100%, but each time we leave and come back, it's another hospital co-pay that, quite frankly, we can't afford.

So, our plan yesterday was to "pretend" like we went home. They stopped giving Frankie constant fluids, and only hooked him up when he needed is antibiotic. I wanted to see how he was overnight and first thing in the morning. And, this morning, he was fine... no vomiting, no diarrhea. But, of course, that certainly doesn't mean things will be fine tomorrow morning. We can only hope.

We are going to be discharged today. I'm feeling obvious signs of Stockholm Syndrome, but I'll deal with it. We've been doing this for so (expletive) long, that nothing surprises me. Frankie still has a few more days of antibiotics that we will give at home. So, I guess I'm nurse mom again!

Say prayers for an uneventful next few days! I'll update when I can.

Tuesday, March 18, 2008

CLICK HERE FOR LuDAL FUNDRAISER INFO-.pdf file

One - We're in the ED (Emergency Room) again. We have no answers and it's getting ooooh, just a little bit frustrating. Frankie is going to be admitted to the 7th floor, again. This is the third time this month, since March 6th. Can you say "THIS SUCKS"???

Two - Frankie was diagnosed with MPS IIIA three years ago yesterday, Saint Patrick's Day.

I'll update when I can. I'm not sure it's going to be any different from the other times we've been admitted. We're just waiting for a room upstairs, so I thought I'd type up a quick update.

Monday, March 24, 2008

CLICK HERE FOR LuDAL FUNDRAISER INFO-.pdf file

As many of you already know, we hate to jinx ourselves. So, I waited until today to update. We made it through the weekend!

Frankie was discharged from the hospital on Thursday. Frank and I were able to go to a birthday party (adults only) on Saturday night. And, we were able to be with family on Easter Sunday. Whew!

But, that doesn't mean to say that we are in any way, shape or form on a safer road just yet. I know not to tempt fate. So, we just wait patiently for the next day to come, and then the next, until we forget that we're waiting.

Frankie has two appointments this week, one with Endocrine and one with his regular Hem/Onc docs. So, we'll be a bit busy with that, school and our first Parent/Teacher conference! Wow!

Thanks to everyone who has continued to keep track of us. Please continue to say prayers for young Kacey and her family. She is such a beautiful young girl that deserves your prayers, thoughts and good wishes.