Wednesday, May 2, 2007

Well, after a week of recovery, Frankie was admitted last Tuesday (April 24th) with a fever of 101.6F. Thankfully, it was just an infection related to his umbilical hernia. And we were sent home after two days with oral antibiotics.

So, now a week after that, we're home and trying to get back to normal. It's so hard to get into a routine lately, when every time we turn around, we're getting admitted.

Besides that, we don't really have any new news.

But, what I do ask is for your prayers for all of Frankie's friends, old and new, that are recovering or living with diseases and disorders that make life a little more challenging for them, and their families. You have no idea the power of your prayers, thoughts, and even the smallest note left in their guestbook. I know, because it constantly reminds me of the love and support that surrounds Frankie. For that, I am most thankful.

This month, the 21st to be exact, Frankie turns four. I am blessed every day I get to wake him up and hug and kiss him. I am blessed every night I get to give him a bath, dress him (lather him in Protopic and Triamcimalone creams), give him a hug and kiss goodnight. Trust me when I say, I cherish every single second. Cherish every single second with your children... it is worth it! The laundry will get done, dinner will get made, the bills will (eventually) get paid...

A few dates to remember, with appropriate links:
Saturday, May 5 - Rainbow of Heroes Walk, Durham, NC
Saturday, May 12, 6:30pm - Fundraiser for Frankie, Hamden, CT
Tuesday, May 15 - National MPS Day

Thursday, May 10, 2007

This past week, Frankie woke up with a fever. So, it was off to the ER for our undetermined length of stay at Hotel Yale... again.

This time, I think we were just ready for the 5 hour wait in the ER before a room was ready on the 7th floor, so the time didn't seem to pass so slowly (at least for me). And, as usual, we received a wonderfully cheerful welcome from our nurses.

Thankfully, this stay was a shorter one, and we're home now. And, since Frankie was inpatient last Mother's Day and for his 3rd birthday, we're doing everything in our power to avoid that this year. So, maybe he was just getting it out of his system this week. :)

We had a follow-up appointment today at clinic for his FK level as well as a follow-up with surgery for his port and umbilical hernia surgery. And, depending on what the FK level is, we may be able to wean his dose a tiny bit more again. But, no one is going to take any chances, so we're taking everything in super slow motion.

And, since we were a little busy this past week, I have no idea how the Rainbow of Heroes Walk went. I wish we could have gone, but maybe next year. Our thoughts and prayers continue to go out to all of the children and families affected by disease/disorder. We pray for healing, comfort, and peace.

Saturday night is the joint fundraiser for Frankie and Cameron. If you're in the Hamden area this weekend, please consider going to the Broom Ball event. If we hadn't been hospitalized this week, we would have gone, but the crowd will be too much for Frankie, so we'll have to stay home. But, both my family and Frank's will be there to enjoy the games.

A few dates to remember, with appropriate links:
Saturday, May 12, 6:30pm - Fundraiser for Frankie, Hamden, CT
Tuesday, May 15 - National MPS Day
Monday, May 21 - Frankie's 4th Birthday

Sunday, May 13, 2007 HAPPY MOTHER'S DAY

Happy Mother's Day to all of the wonderful women that have blessed my life! I am so fortunate to have met such strong, inspirational women over my 35 years, especially these last three. Faced with what seems to be one insurmountable challenge after another, I've seen ordinary women display incredible strength and courage for their children.

Regardless of the situation, I believe all parents would do what we have done. You just buckle down and do what is best for your child. It's almost like you go on autopilot. It's all relative. Our specific challenges with Frankie are, by all means, a bit different, but that doesn't mean that mine are any more difficult than those of my sisters.

I think back to when I was a little girl... the youngest of four girls. My poor father was outnumbered! By my age, my mother had four young girls, ages 4, 8, 10 and 12. We had chores, responsibilites... we were taught to respect others, pride in one's self, and basic manners.

My mother is amazing. She would take all four of us, by herself, from Connecticut to England. I can barely get Frankie to the grocery store without wrestling with his mask a few hundred times! So often we forget how we got where we are, who helped us to be the person we are today. I believe I'm a good person. I owe that to both of my parents and my three sisters.

Without the love and support of my family, both my side and Frank's, and my wonderful friends, transplant and non, I doubt I would have weathered these past few years as well as I have.

And, now I'm rambling. I guess I'm just trying to find the right words to thank all of you for your continued love and prayers.

Thank you, Mum, for teaching me what's important. I love you so very much. Happy Mother's Day, everyone!

A few dates to remember, with appropriate links:
Tuesday, May 15 - National MPS Day
Monday, May 21 - Frankie's 4th Birthday

MONDAY, MAY 21, 2007 HAPPY 4TH BIRTHDAY, FRANKIE!

Today is a wonderful day! Today, Frankie turned 4 (8:03am). And, roughly that time this morning, he was having a Physical Therapy session... no easy day for him!

Daddy made Frankie a wonderful breakfast (banana pancakes), which, unforunately, he didn't want. But, instead ate all of his strawberries and vanilla yogurt. I must say, he missed out on the pancakes!

After Physical Therapy, we hopped into the car and went to the Beardsley Zoo (Bridgeport, CT). It's a small zoo, but it's perfect for little kids. And, it was beautiful weather for walking around. The sun wasn't to hot and there's a lot of shade throughout the park. He really seemed to enjoy running around. It was really great to see him happy, laughing and truly enjoying himself.

I've added new pictures to the web site, so please check them out when you get a chance. Even though we're weaning the steroids, his face still shows a lot of weight. We're hoping that will drop off soon.

Tonight, he has a session with his Special Ed teacher, Michelle, and then we'll be enjoying some hotdogs on the grill and later some cake with the grandparents. I have yet to frost it, but I have time... I think. :)

Saturday, May 26, 2007

Be careful what you wish for.

So, for a while, Frank & I had done what we could to avoid another hospitalization, especially Mother's Day and Frankie's birthday. And, we made it. Ah, yes... but we forgot to add in big holiday weekends to our wish.

Last night, around 10pm, Frankie was still fussing and not really sleeping as soundly as he does. So, Frank went to check on him. He had a fever of 101.5! He was bright red and so super hot, I couldn't believe he was "just" 101.5.

So began the routine of calling the on-call doctor and packing the bags for the 48-hour Minimum stay at Hotel Yale!

We were at the ED by 10:30pm. What is it about Friday nights?? Do kids just wait until that night to get injured or sick? There must have been twenty children in the ED when we arrived.

Thankfully, we were rushed into an exam room, and since we knew we were being admitted, our ED stay was only 2 hours! A record! And, for whatever reason, I think it went more smoothly because all lines of communication were open. Plus, they really needed the rooms in the ED. Everyone has their own agenda.

By 1:00am we were settled in a room, Vancomycin started, Tylenol given, and Frankie asleep. Now, we're just waiting to see if the blood drawn from his line comes back with a virus. If not, then hopefully we're home by Monday. If it comes back positive, then it will be a longer stay for us... at least 7 days.

On a side note, the fundraiser for Frankie (Broom Ball) from May 12, raised just over $700 for each child (Frankie and Cameron). I'm told it was a great event. We couldn't go because we were trying to stay out of the hospital, and were told to avoid crowds. I wish we could have gone. Maybe another time. MANY THANKS to all who attended and of course to the players!

I hope this update finds you all well and enjoying the Memorial Weekend!

Take care,
CJ, Frank & Frankie!

Wednesday, May 30, 2007

We're out.

We were originally going to be discharged on Sunday, but prior to leaving, I really wanted a CBC done so we could check Frankie's ANC level. Whenever he gets antibiotics, his ANC takes a hit.

I was actually surprised that the doctor's never ordered a CBC on Frankie while we were there. In any case, his WBC came back at 2.4, so I knew before seeing the differential that we'd be staying at least one more day. And, good thing, because his ANC was under 300! Very neutropenic!!

He received a dose of GCSF on Sunday and on Monday before we left. And, on Tuesday, we went for another check of his levels. His ANC was 1100, thankfully.

And, since we were in the hospital for the entire holiday weekend, we weren't able to put together his playset (his birthday present from his grandparents). So, hopefully, the weather will cooperate this weekend, so we can get that set up for him to enjoy.

But, before that gets done, I have to rake the lawn so Frank can mow. We had a tree removed and there's too much debris right now to do anything back there. My dad came over today to help clear some of the overgrowth. We'll have to do it in stages because the weather is so hot and sunny.

I hope everyone enjoyed their weekend!!