Fries are done

Friday, March 30, 2007

Persistance Pays Off.... in more ways than one...

We have always raved about the wonderfully proactive and thorough care we have received from Dr. Patranella and now we have yet another reason to rave: Ever since we had the PET scan back in December, she has been trying to get us reimbursed for it. (If you recall, Chris spent many hours on the phone trying to get it covered by insurance, only to sit on hold or get routed to incorrect people, or cut off after 20 minutes.) We got a call last week that Aetna had finally accepted the appeal and would respond within 30-60 days. Melissa, from Patranella's office was on the case. We all knew it should have been covered because this was the test that prevented either surgery, or more chemo, and in either case, saved Dante from unnecessary treatment and/or surgery, and saved Aetna at least another $30K.

Yesterday, Dr. Patranella left us a personal message on my cell phone that Aetna had decided to reverse its decision and cover the PET scan! That was $2000 out of pocket, so what good news! We can't thank them enough for following through.

Finally found out Dante's AFP today: 2.7!!! I asked Pam, "Did you say 10.7?" "Nope, 2.7." It's supposed to be below 7.9 and had been pretty close to that the whole time (or slightly above. You'll recall on Dec 26th it jumped up to 18 - scary). This is good news. His Osmotic Fragility Test (I just had to say that) came back negative. That was the test to see if he had a couple of different forms of mild anemia. I guess we'll just go the fact that he has a lower than normal hemoglobin level - hey, somebody's got to be at the bottom of the scale.... or that it just hasn't quite recovered yet?

We don't go back to the doctor for a month. I think I will keep a closer eye on him this month and see if he gets pale or weaker, and then call up the clinic for a CBC if he does. I noticed last month he had a couple of days where he seemed real low, and that was right when we did his CBC.

Dante and Carina had some sleep-over time at Nonni's house and Kim's house, while Chris and I escaped for a few days. Big thanks to Nonni, Uncle Mike, Kim, John, and Uncle Dave for making that a possibility. They both had a great time and sufficiently reminded everyone what it's like to have young children.

Both kids seemed to have really grown more hair this week. They're in a sort of race to see whose hair can grow long faster!

Thursday, March 22, 2007

A Lucky Day

You know when you say to yourself, "Self, I'm going to put this here, so that I don't forget it. So, don't forget it." .... and then you go ahead and promptly forget it? Well, this morning in our rush to leave the house in time for the CT scan, Chris set his sunglasses on my mom's van while putting Carina inside. I even saw him look up at them, thinking about not forgetting them, as if the thought-bubble where appearing over his head saying those auspicious words. We drove off in the opposite direction and a block away Chris realized that he had, in fact, forgotten the sunglasses ....So we turned around and tried to follow mom's path. After 2 blocks we realized, as we were sitting at 22nd Ave waiting for traffic to clear, that it was probably hopeless. So, we turned towards the hospital, drove another block and guess what was in the middle of the road? - Chris's sunglasses - untouched, sitting askance the yellow lines, at rush hour, the opposite direction that mom usually drives. I told Chris right then we should buy a Lotto ticket.

Dante did great this morning. We tried the CT without total sedation, but with a nice cocktail that made him mellow and quite stoned; it worked! Halfway through, he says real quiet, "WOW". He did great with his port, considering it's been so long since he had it accessed (5 weeks). We went over to the clinic afterwards to draw labs, and for a routine check up. Dr. Grana was there and said he looked great. He gained 2 pounds and grew 1 inch since February! His hemoglobin and platelets are still running low, so they drew more labs. Dr. Grana said he might have a mild form of anemia, because his initial pre-chemo CBC showed a low hemoglobin as well. But, we never noticed since we hadn't needed blood drawn before that. She also said his immune system should be almost back to normal and can now handle preschool, mall play areas, etc - with handwashing, of course.

As we left, we went to get a bagel for breakfast, which Dante loves to do, and before we were even a block from the hospital, he was passed out in the backseat. He was super tired from getting up early, having a slight cold, and of course, the drugs. When he woke up 3 hours later, Chris asked him what we did this morning. His answer was "Get bagels." :)

The clinic called around 3 and said the results were back...with nothing on the scan!!! We got the detailed report faxed over and it looks like everything is proceeding normally with no changes. I knew it was going to be a lucky day - should've bought that Lotto ticket.

Monday, March 19, 2007

Don't mean to leave everyone hanging...

Busy Busy Busy around here lately...will report more on that later when I have a free moment.

Not too much news on the health front, except that Dante has a CT scan on Thursday - let's all hope it will be the last one for awhile!

Daddy returned from his trip and we were all very happy to welcome him back home, and back to help out with the routine. Boy, throw a change into a 2 year old's routine? By Thursday, I had to call mom and ask her to come rescue me so I could just step outside and scream! All is good now. And in perspective, it all seems silly. But, certainly not when you are sleep-deprived, spouse-deprived, hungry and dealing with an 8 month old who is teething and not wanting to leave your side and a headstrong 2 year old who won't nap!

Calgon, Take me Away!

Thursday, March 08, 2007

Wear Sunscreen!

Last fall, during one of our hospital stays, I had pulled my hair back in a ponytail and noticed that I had a spot that looked like I had scratched something on the edge of my scalp. I thought nothing of it, and then a month or so later, again at the hospital, I noticed it was still there. Well, once we sort of had our wits about us again (January), I went to the dermatologist and sure enough, it was a basal cell carcinoma (skin cancer).

I had it "removed" this week and being the second one I have had, I thought not much of it, even though it was a new procedure. Well, perhaps I should have asked more? I now have a section of hair shaved and a 3 inch row of stitches on my hairline. As the Doctor was stitching up my head, I realized I was getting a mini facelift on the one side of my face. Even though the spot wasn't that large, it was a couple of layers deep and in order to make it heal smoothly, they had to make a larger seam. I will have the stitches in for 10 days. Luckily my hair should fall over the shaved area and not be a big deal. I can't even describe how horrible a disposable razor with a surgical blade sounds on your head when it is already been numbed and you can't see what they are doing. The doctor was pretty funny too. He says, "Now don't stare in the mirror and freak out because your head is all swollen and you have these stitches and all. It will go away soon." And then he hands me a mirror.

So, I went to work right after the appointment and had a huge bandage on my head. These are the things that were asked: "did you fall? did a kid push you? car accident? what did you do?" My answer? I didn't wear sunscreen! Anyway, let's just say I have one serious headache. Too bad I can't take the painkillers they prescribed.

Dante has had another good week. He is very into his "yoga video" - yogakids ABCs. He tries to do some of the positions and sings a namaste song. Very cute. He has been super lovey this week, asking to hug and kiss us all the time. I think the sibling jealousy is kicking in big time. He's getting more and more upset when Carina grabs his toys. In the meantime, she's just trying to get closer to him, because she wants to be doing whatever he is doing.

On our way home from music class last weekend we went by some stables in South Tampa and said hi to the horses. We brought Carina to music class this time to see what she thought. She was taking it all in, but unfortunately, class is right at a time when she usually naps, so that might not work for her.

It is interesting, but I guess not earth-shattering, how different the two kids are. Dante just loves music and always has. Since he was born, if we would sing to him, he calmed down instantly. I remember being home alone with him for the first time, he was freaking out crying and I was running out of things to sing! I just kept singing the same things over and over. Those songs are still some of his favorites. Carina seems to have no interest. When we sing, it barely affects her at all. Sometimes, she will smile and stop and listen, but nowhere near in the same way that Dante did. But then again, he wouldn't even think of crawling somewhere without complaining about it first, and she is from room to room without even a thought. It will certainly be fun to find out what kind of personalities they grow into.

Double Trouble

Chris will be going out of town this week, so hopefully, things run smoothly. We have a decent bedtime routine going, but it mainly works because we're both here to make it happen. I think I will have to pull the "be a big helper" routine with Dante and have him sleep in our bed again. Twist my arm.

mean face - "we better NOT be out of cheerios..."

surprise face - "we have pistachio cookies?!"

Thursday, March 01, 2007

the Ides of March

Every year, I suddenly remember that although March is a beautiful time of year in Florida, it is miserable to a person with pollen allergies...Chris has those allergies. Which means that all windows stay closed - house and car, the cats are banished and he is trapped inside with tissue dispensers strategically placed throughout the house. Our yard looks like it is covered in golden brown snow - oak leaves and pollen.

This week, when Chris had the kids it was a bit tough trying to entertain them all day without going outside to walk, play ball or go on the playset. They went to the aquarium instead and had a good time. What a good investment that aquarium pass has been!

We start a new round of music class this Saturday and Carina will be joining us for this session. We shall see if she is as musically inclined as her big brother. I tend to think not, as she doesn't appreciate our singing nearly as much as Dante does. Dante tried to write w new song tonight to match one of his favorite books, My Big Boy Bed, but he didn't seem very happy with it, as it sounded just like the "pee pee" song. So, we set it to the tune of "Stray Cat Strut" - one of his favorites.

Today, I stopped by mom's house to pick up Carina, and Dante proceeded to ask for about everything in the house to eat, so mom casually says, "Are we still worried about his appetite?" I doubt that. He eats great and is definitely gaining weight. Although, his new fad is to steal Carina's cheerios.

Thanks for the sleep advice. We have had a decent week. Both kids have slept pretty well. Carina is learning to put herself to sleep at night and when she wakes up, it doesn't last long or else I bring her to bed with us and she passes back out. I thought I was feeling caught up on sleep and then the other night, I laid down to put Dante to bed and woke up the following morning! I never do that - I guess I needed it.

We scheduled our next CT scan for March 22nd, so no real health updates until then. Just staying in our holding pattern and hoping for a good month!