Thursday, January 5, 2006 - Day + 189
Happy New Year, everyone! I feel so out of touch as Frank, Frankie and I have been fighting colds for the past couple of weeks. I felt my worse right before New Year's Eve. I was the one walking around my house with a mask on, trying not to be too huggy-kissy with my son. That weekend, Frankie started showing more consistent signs of a pending cold... runny nose, sneezing, slight fevers and a couple other symptoms that most people show when they're not feeling great.

So, of course, this worried both Frank & myself. We've made a couple of calls and visits to Yale to make sure there's nothing major going on that would otherwise compromise Frankie's recovery. Yesterday, they tested Frankie for any viral infections, and everything came back negative, but that doesn't mean he doesn't have anything, just not anything they tested for just yet.

We've been pretty low key here at home. We've had a couple of adult visitors restricted to family and close friends, which has been a nice change for all of us! And, thankfully, everyone who comes over is completely honest with their current health issues.

Last night was a rough night for all of us. I know the viral battery came back negative, but Frankie didn't sleep well last night. He was up on more than one occasion and up for a long time each time. So, we didn't get that much sleep. At one point, Frank thought I put Frankie in pajamas that were too small, and thought that might be uncomfortable for him. So, around 1am, since Frankie was already wide awake, I changed his PJs. He was up a couple more times in the early morning, so that couldn't have been the only reason. :)

On a side note, new friends of ours, who just recently discovered that their third son has MPS III Type A, are down at Duke this week for his work-up. This work-up will determine if their son is a candidate for the transplant. This is a very difficult time for them, so please say some prayers for them. And, if you're reading this, Good Luck!!

On Saturday, Frank's cousin, Mike, will be leaving for Fort Bragg for three months of training before heading off to Afghanistan. We were able to see him last weekend for a few minutes to wish him luck. It's sad, because I think it's the most I've ever spoken to him, and I'm so sorry for that. He's a great guy and I know that no one in the family is really thrilled that he has to go. So, Mike, if you're reading this, Frank, Frankie & I will be thinking of you and saying our prayers for a safe & quick return!!

See below a couple of pictures of Mike at one of Frankie's fundraisers this summer... a carwash at the North Haven McDonald's!!

Tuesday, January 17, 2006 - Day + 201
Has it really been 12 days??!! So sorry for the lack of updating. I'd throw in some excuses like we've been really busy or I've been sick, but I really don't have those. Although, Frankie was a little under the weather for the past few weeks, it wasn't anything that was of tremendous concern, mainly because we were so proactive about everything... not to mention, cautious.

Let's see... not much has really changed. Frankie's meds have done a little yo-yoing, but that's only because his cortizol levels still haven't gone above 1.0. What this means is that he doesn't produce his own steroids, so he doesn't really have much of an appetite. When we were at Duke for his 6 month studies, the endocrinologist there examined him and we had tests run to make sure he wasn't suffering from adrenal deficiency. And, unfortunately, they can't explain why he's not generating his own cortizol. So, we've bumped up the dosage of Cortef again, with interesting results...

On Friday, we increased his Cortizol dose, but not by much, from a prior wean. At 1am on Saturday morning, my lovely son was WIDE awake, and did not show signs of wanting to go to sleep anytime soon. But, he seemed pretty happy just playing in his crib. When he still hadn't fallen asleep by 5:30am (still happily chatting to himself, Blue, and Monk in his crib), I got him up and brought him downstairs. We watched a little Barney for roughly an hour, I gave him his morning medications then he started to yawn. At 7am, I put him back to his crib for a couple more hours of restful sleep.

On Saturday night, it was almost a repeat performance. Early Sunday morning, Frankie was wide awake again somewhere between the hours of 1:00 and 3:00 am. I was so exhausted, I couldn't tell you how long he played in his crib, but I think I told Frank to get him around 5:30am. And, the Sunday morning routine mirrored that of Saturday's.

Monday morning was a little better, with Frankie waking at 4:30am. At 5:45am, I begged Frank to take him until 7am. Thankfully, he did so without too much complaining. I can't fault him, we were both up that night (or rather that morning) with friends until around 1:00am. And, it was his day off.

Despite the weird sleeping pattern, Frankie has been doing very well. He's finally over the cold he was fighting, thank God. Ever since we realized he caught a cold, we've been basically keeping him in the house. We used to feel "okay" to take him to the grocery store during the non-busy times (are there??), but with the weather, the flu season, and various other reasons, we realized it just wasn't worth the risk. So, I've been using the home delivery system at our local grocery store!! It's worth the $10.00 delivery fee, that's for sure... I don't have to hassle with the supermarket, and everything is delivered to my kitchen door the following day!

Tomorrow, I'll just be dropping off blood to Yale, no clinic visit this week! His counts have been doing very well over the past few weeks, that we've been able to trim our clinic visits to every other week. And, since we're so versed in drawing Frankie's blood, I don't have to drag Frankie into the clinic just to get that done.

Well, this turned into more of an update that even I expected! One thing to note... Kate has a new web site (to the right). She now has a Caringbridge web site, so please visit the beautiful princess there!

And, for those of you who may not know, I am no longer a UPS employee. I think it was official today or maybe even last Friday. This doesn't mean I won't be back. I just can't return to work as originally planned (Jan 25). Frankie's immune system will not be strong enough until probably the late summer for him to be around other children. That leaves out Daycare, my mother or my mother-in-law for watching him during the day. And, we'd have to hire someone clinical to take care of him, if it were anyone else... frankly, we don't make enough money for that, nor would I feel right about it, either. So, now I'm a stay-at-home mom. And, I'm really good with that. I have to say, too, that I couldn't have asked for a more understanding employer. Everyone where I work has been so incredibly supportive and it's just so amazing to me. Thanks!!

So, for me, I've taken up a new hobby... knitting! I've done quite a few scarves over the past month, and now I'm doing a coat. I've already finished the back after just a couple of days. I don't knit while Frankie's awake, so it may take me a while before it's complete! I'm also going to return to a past love... black and white photography. Lord knows it's a lot more fun than doing laundry or cleaning out the attic!

Wednesday, January 18, 2006 - Day + 202
Okay, I may be slightly demented... I'm asking anyone who watched Regis and Kelly this morning (Wednesday, January 18) to send me an email with their "Word of the Day" for the contest they're running right now. I know I'm one among millions who will enter the "Out of Control February Fantasy" contest, but I would love to try.

I wasn't able to catch the episode today because I was running Frankie's blood to the clinic and then had to pick up his prescription at the pharmacy. When I got home, the show was already over.

If anyone knows the word of the day, please email me at cynthia@frankiepants.com. Thanks so much!!!

PS... Frankie is doing so much better. His chemistries and counts came back this afternoon, and to quote his nurse practitioner, "His numbers are rock solid!" However, the cortizol level is still a mystery! :)

Hugs!!!

Thursday, January 26, 2006 - Day + 210
Over the past week, things sure have been crazy. I've gone through so many emotions and situations than I care to ever go through again. It amazes me how much things can change in just a matter of minutes. Don't worry, it has nothing to do with Frankie's health... I'm just rambling.

But, to top the entire week off, yesterday, Frankie woke up about an hour earlier than he usually does. So, tired and eyes still partly closed, I opened the door to his bedroom to find I could almost see my breath. It was freezing in his room. And, he was wet, so you can understand why he was up early. I'm just glad we didn't get the winter weather we were expecting. You have no idea how incredibly cold it was in my son's room.

Apparently, we ran out of oil to fuel our steam heating system of our house. I had been talking to Frank recently how I hadn't gotten a bill from our oil company in a while, and I guess this is why. We weren't getting our normal fuelings because of a computer. What happened was the company was going off our usage history. But, we haven't been home for eight months, so the usage history they were going by was so way off base. On the phone, they were telling me that we weren't out of oil. I guess they have cameras in our basement, because the gauge was clearly showing me that we were out of oil.

On top of this drama at 7:30am, we had to get ready for clinic. Thankfully, Frank stayed home with me so we could handle and/or go through this day together... Did I forget to mention, it was our anniversary, too?!?

We boiled water for our make-shift showers (no joke). I called my father to come over and wait for the oil guy to arrive and fuel us then restart the furnace. Apparently, an oil technician has to restart your furnace if it should run empty.

Amazingly, by 8:45am we were on our way to clinic. Since we arrived later than I usually do, we had a bit of a wait. I expected it, and Frank was with me, so I didn't get completely unnerved. But, while waiting in the general area, I realized yet again, how much my son misses playing with other children. I thought he was going to get whiplash the way he watched all of the children pass him by. Some of the children are curious of his green mask, but I think, in general, it doesn't even phase them. It just breaks my heart that he can't even play with his cousins. I feel like he's missing out on so much... time he'll never get back.

Clinic took a whopping five hours! I wouldn't have minded so much, but the facilities are not very comfortable. It's nice that we get the one isolation room, but there's just an examination table (not a bed, like at Duke), one broken, death-trap of a recliner, one chair and two children's chairs with a round table. Thankfully, they do have a TV that we can play VHS tapes of Barney, Thomas and Blue. If it weren't for the wonderful treatment from the nurses and doctors, the day would have been miserable.

Finally home around 2:30pm, Frank & Frankie took well needed naps. I tried to nap, but my mind was reeling over the past week and the $600.00 fuel bill that was conveniently left in my mailbox for me to find. I debated about going out to dinner for our anniversary (as originally planned). I was so tired, I just wanted to sleep. But, if we stayed home, I'd have to cook dinner, and that meant cleaning the dishes from the night before.

So, we went out! And, it was wonderful. We had great food and fabulous service at D'Errico's in North Haven. We ate like royalty! They have the most amazing food. It's a small establishment and the lighting is low. It gives a great feel for a nice night out for dinner. The portions are huge, too! Both Frank & I had the Steak Frederico, DELICIOUS! Steak with spinach, portabello mushrooms and lobster in a cream sauce. I'm smiling right now because I'm realizing I have leftovers in the fridge. And, the creme brulee and banana split pie were so very tasty! Yum!

This was a longer write-up than I expected, and nothing yet about Frankie! Oops.

Frankie is doing great. All of his counts came back within normal range from yesterday's blood draw. His doctor and nurse practitioner believe he's progressing very nicely. His cortizol level continues to be a mystery, but not a major concern as of yet. His CMV levels came back negative again, so we're weaning him off of the Valganciclovir dose, back to Q24. The latest thing is that we're trying to get him scheduled to see a dentist as his teeth may be sensitive. But, we don't have dental coverage anymore (another mistake I have to deal with). I'm waiting to hear back from Yale's Pediatric Dental Unit. I don't know what's going to happen since the first (and last) thing they asked me on the phone was which insurance I had. Great.