Thursday, March 2, 2006 - Day + 245
Just couple of updates over the past week:

Saturday, February 25th - National MPS Day. You're supposed to wear purple that day, but seeing as it was a weekend, and I do most updates during the week, I dropped the ball on this one. Woops.

Wednesday, March 1 - Clinic visit went well. Dr. Sleight is happy that Frankie's rash is going away. But, it seems to still hang out on pressure points with bumps and peeling skin. We're not concerned, just curious about the state of his skin at this point.

Frankie's blood pressure continues to do well, so we are now officially off of his blood pressure patch! Only Amlodipine (PO) remains. We had the two infusions Wednesday and are planning to be back in three weeks, should everything go well between now and then.

His appetite continues to be up and down, mostly down. But, he's got some wiggle room in the weight department, so no concerns just yet. And, for those of you who know what I'm talking about, his cortizol level, which has been consistently under 1.0, came back as 6.0 from yesterday's blood draw! So, he now has the steriods in his system to make him hungry. Now, he's just being obstinate!

But, to his defense I must come... He's been coughing for about two days straight and has had a (clear) runny nose for maybe four days. So, I'm thinking he's not feeling 100 percent, and that's probably what's really affecting his appetite. All in all, Frankie's doing very well lately. We are very lucky with his health, and are blessed with the family and friends we have that love and support him and us.

On a separate note, at 1am on Wednesday morning, my father was brought to the emergency room in excruciating pain. Around 12:30pm that same day, he had his gall bladder removed, laparoscopically. The surgery went very well, and he is recovering nicely. This morning, Thursday, before the snow, my mother and I went to the hospital to visit him. He's a bit sore, slow moving and talking, but is doing great and should be discharged either tomorrow or Saturday.

Ah yes, I mentioned snow, didn't I??? Yeah, I just read the weather report and it's 71 degrees in Durham. Not fair!! The weatherman said it was going to start snowing mid-day. Well, apparently, mid-day is 9:30am. It's 12:30pm now and it's still snowing. It's a light snow, small flakes, but still it's steady coming down.

Love to you all! Keep warm!!

Thursday, March 9, 2006 - Day + 252
Good afternoon, everyone! Well, this week has been interesting...

Frankie's still not eating all that great. I think I can get him to have just enough baby food with his crushed up Magnesium tablet in the morning, and then every meal after that is an adventure! Each meal, we try to offer Frankie solid food. And, each meal, if he gets a piece into his mouth, it usually ends up on the floor. So, we should be buying stock in Pediasure soon.

Because I was concerned, I brought Frankie into clinic yesterday. He had lost another 0.7kg from last Wednesday. He still has some room to lose weight therefore, the weight loss is not a huge concern at this point. Dr. Sleight took a good look at him, and even though a small rash has presented itself on Frankie's face, she does not believe it's GVH.

For those of you with weak stomachs, you may want to skip this paragraph. Another reason I brought him to clinic yesterday is because he's been having bouts of diarrhea and vomiting for about four days now. Our biggest concern, of course, is GVH in the gut. The weak stomach and the presence of the rash on his face spurred us to action. As a double check, I dropped off a stool sample this morning to the clinic, so we're just waiting to hear back from the doctor as to the results.

Today, Frankie had a dentist appointment to look at his chipped front tooth. Because he still has his central line, we premedicate. And, for those of you who remember my first attempted visit to the dentist, let's just say, it was practically a repeat performance.

I completely forgot a conversation with the dentist where she told me that he shouldn't eat before the appointment. When you have a child who doesn't eat, and he wakes up wanting something, you give him something to eat, right?? Well, he actually kept down a half of a portion of scrambled eggs.

Long story short... they wrapped him up like a cocoon, so he couldn't move his arms or legs to take an x-ray of his tooth. That went okay. Of course there was inconsolable crying, but trust me, worse was soon to come. The dentist then started to give him nitrous... this did not mix well with the scrambled eggs, as most of you can imagine. The next thing I know, there's this geyser rising from my son's mouth, hitting everything. And, when I say everything... I mean everything. As I was retreating with my hysterical son shortly thereafter, the dentist was still picking out bits of egg from her hair. There are very few times in my life when I can say I've been completely embarrassed... this hits the top of the chart. We've rescheduled for May. Lesson learned.

Friday, March 10, 2006 - Day + 253
Just a quick update tonight. Frankie is doing much better. His spirits have never dimmed, but he's showing more interest in eating, and keeping it down. On the downside, his rash has a bit worse, red and spreading. I'm loading him up on his creams, so I hope that will keep things under control.

Please note that I have added another name to Frankie's "Club 5200" list. Lane was an older child that was diagnosed with ALD (Adrenoleukodystrophy). Unfortunately, Lane passed away November 10, 2005, at the age of 25. He was 21 months post-transplant. Lane was on the floor at the same time Frankie was, and his mom, Diane, was one of the first people Frank & I met on the unit. She's a wonderful and proud momma. I remember her always with a positive attitude, despite her son's diagnosis. I apologize to her and Lane's family, for not adding him to Frankie's web site earlier. Please do me the honor of visiting his site.

Friday, March 24, 2006 - Day + 267
I know it's been two weeks since my last update. To be completly honest, I've been a bit burnt out and needed to take a break. Even now, I realize this update isn't going to be huge, because Frankie's not settling down for his morning nap.

Frankie has this inexplanable rash all over his body. The doctors here at Yale and the dermatologist really can't say what has caused it, but there are theories, of course. The theories include: GvHD, an allergic reaction to Bactrim, or a reaction to a virus. I have a feeling it's a combination of all three... or something we just haven't figured out yet.

The plus side is that the rash hasn't affected him in any other way than being unsightly. He doesn't scratch at the red bumps, his eating has very much improved, and so have his diapers. So, I guess we have that going for us!

As for Frank & I, we're getting a fun night out tonight. Our friend, Matt, is celebrating his birthday at a local pub, and we've got Frank's parents watching Frankie so both of us can go. It should be a good time, to say the very least.

Thank you for your patience, your emails and your continued prayers.