Sleepytime Quartet

So, it's almost Friday again. We have had a pretty good week. Kids in great moods, going to bed at reasonable hours....but not staying asleep.

What do people do when they have kids at this age that have to share a room? I thought we were on the right track, but then Carina has started waking up at 1am every night crying. We try to just let her cry, because she doesn't cry very long, but then Dante wakes up crying! And he gets out of bed and comes into us crying - loudly! Which then really wakes her up... you can see our dilemma. The other morning, Carina woke up at 4:30, so I just brought her to our bed. Then, Dante woke up at 5:30 crying and it was 6:15 before I got them both back to sleep. We are still having to put Dante to sleep in our bed most nights, as Carina doesn't want to give it up when Dante is ready to fall asleep. I know this is just a phase and once Carina figures out how to stay asleep or go back to sleep easier, this will pass. But, in the meantime - any suggestions?

Carina has been very chatty the last couple of days, saying what sounds like "bubba" - which is perfect, that's what we call Dante around here. It would not surprise me if her first words are his name since she just thinks he's the cat's meow. That is, when she's not making the cats meow by pulling their hair!

Dante is very into letters and numbers, spelling and counting. The other day, he spelled Carina. Then I asked him to spell a couple of 3 letter words like "hat", "sun", "jet". He did it! He's now moving onto being able to read some words as well. The other night, he was counting stuff at dinner, as always, and he got to 29 and then said "20 10". I said, "30", so he starts "31, 32..." We did record a video of him singing his abcs with peanut butter in his mouth, that probably only a parent would enjoy.



Dante is looking so good lately. His hair is very slowly coming in and his eyelashes are growing back. When he was born, he had the biggest swirl of hair on the crown of his head; we always said it looked like a hurricane on a weather map. I can see it coming back, so I decided to track it's growth with photos. The best part is that he is starting to fill out again and just look healthy. Dante was always a big kid, so it's nice to see meat on his bones again. He took his last "minty medicine"(zantac) this week and he seems to be doing just fine. Eating like a toddler boy should. Not much progress on the potty this week, but it will happen - hopefully not in the bathtub anymore.

This weekend, Chris and I are getting out for our friend's birthday, music class on Saturday morning and hopefully, lots of playing outside! The weather has been beautiful here - blue skies, days in the 70s, with cool, clear nights...

Standing Pee and Other Triumphs

Busy week around here. On Sunday, Dante, Carina and I went to the aquarium. It was a nice day out and I knew we needed to get out. It wasn't too crowded, so it worked out well. Carina was happy as can be sitting in the stroller watching all the people and Dante. Dante was super cute showing all the fish to his Diego action figure. "Diego, look at all the fishes! Wow, Diego, Look at that!" I wish I had had extra hands to catch it on camera. We went through the aquarium twice, since he always wants to go back, and he barely stopped to look at anything. Then as we were leaving, he was begging to go back through again.

We were very excited to have daddy home on Monday night. We went to the airport and Dante told me we would see 4 airplanes and sure enough, that's how many we saw! I should have asked him for lotto numbers. Later, when we were getting into the bath, Dante peed standing up at the potty! Go Dante! That was a first for us, as we had put potty training on hold after diagnosis. He has since done that one other time and even written his own tune, called the "pee pee song". It goes like this: sway back and forth (because he does that for all the songs he writes), start out loud and get softer as you go down the scale, and sing each word slowly - "pee, pee, pee, pee" then repeat. Destined to become as big of a hit as his other tune, "dibba dabba".

I don't think Dante was ready to give up sharing the bed with me, so Chris has been reading to him in our bed at night and then we move him to his bed afterwards. When he wakes up and realizes he isn't in bed with us, he gets a bit upset, but he gets back to sleep pretty easily. Speaking of sleep, Carina is almost sleeping through the night...although 6 am is way too early for me, it's better than waking up all night long. She really just wants to eat and go back to sleep, but sometimes, Dante wakes in the process and then there is no getting her to sleep. She still wakes up a couple of times, but she's getting herself back to sleep pretty quickly, for the most part. Strangely, I am more tired than before when I was getting no sleep. Although my short term memory is improved. I guess my body suddenly realized- "Hey! We haven't had sleep in a long time! I want more!"

Tuesday night was the Outstanding Educator's Awards and my good friend Louise was a finalist. A bunch of us from school got dressed up to go support her and had a good time. We were very bummed that she didn't win, as she seemed much more deserving in her category than the others, but I am sure they are all great teachers. The teacher who won was a teacher at Lakewood when I was there, and she was definitely a stand out in the bunch. In the program was a list of nominees and one of my former students was in there! She teaches middle school - pretty cool. And I guess that should make me feel old, but I just felt proud of her for being nominated.


Hey, let's go get a CaT Scan!

Wednesday morning, we woke up at 5 am and had to get Dante to start drinking contrast for his CT scan. Luckily, he had woken from a dream around the same time, so that went pretty smoothly. We went in and had the usual level of high quality service and attention that Dante seems to get everywhere he goes. Amy and company were practically fighting over who got to take his vitals. By the time we left, he was covered head to toe in stickers. Things went much smoother than last time and we all agree that perhaps next time, we won't have to sedate him. It takes longer to get him prepped and sedated than it does to do the scan. None of us like sedating him, but getting him to stay still on the table was a near impossibility at the beginning. Now he seems much more at ease with it all.

He was very excited to get to say hi to the fishies and see "cars and people". We went up to our old digs in 2SW and ran into Sara, our Child Life Therapist, which made Dante very happy. He did one of those deals where he is super quiet while Sara is there and the second we walk away, "Dante see Sara!"

Wednesday night, we went out for our Valentine's dinner. We went to a local pizza place that we had only ever had take-out from, but it's always packed. They gave us one of those clip-on-the-table seats for Carina, which she loved, because she was closer to all the action. They gave Dante some pizza dough to play with and kids eat free on Wed - so it all worked out! Dante got some spaghetti and meatballs, which he loves. The entire evening was crisis-free and we felt like the model Nuclear Unit.



We finally got the results of the CT scan this morning. It doesn't say "normal", but it comes pretty close. There is a spot in the lungs that they think is related to his sedation and not breathing deeply enough. There is evidence of a larger thymus, but this is normal post-chemo growth. (Apparently, it shrinks during chemo, so it then enlarges after.) The left inguinal area where he had his biopsy and is always the area in question, is unchanged. No growth, but no shrinkage either. Also, I forgot to mention that our latest AFP test was 6.6!!! We are going to have another CT in one month to track the thymus growth and the left inguinal area. We will also do another AFP at that time. No doctor's appointments for one month. one. month. free!!!

Dante is definitely feeling good. His cheeks are rosy, he is super happy, super lovey dovey with hugs and kisses, playing well with his sister and just being a good kid. He has been napping again lately, which certainly can't hurt the attitude! Carina has also been super happy lately. We have truly been blessed with wonderfully magical children. Now if only we could get some sleep....

All Good News Today

I took the day off today, anticipating spending an entire day at the doctor's office getting a transfusion. I even packed ALL sorts of entertainment. Irene did his CBC while Dante inspected the Thomas the Train stickers and stuck them all over his body. His hemoglobin went up to 9.2 - so no transfusion! Yea! His ANC is 3700; his platelets are still low but up a few points from Tuesday. All of the tests they did the other day to determine the cause of the anemia came back negative. They are still waiting on one test, but I got results for about 10 different things and all were good. Whew.

We have a CT scan on Wednesday morning at 6:30 am!!! fun fun fun. Once we get the results from that, we will determine the plan from there.

Having already requested a sub for my class today, I took full advantage and took the kids to a new park in south St. Pete, Dell Holmes Park. There were a handful of familiar faces from Sweet PEAS there, and Heather met us with Tyler and Gretchen. What a great park on the shores of Lake Maggiore, designed for 2 years and up, everything was low to the ground and safe for preschool age. There was artificial turf, so we set the girls down to crawl around while we chased the boys. It was actually quite hot today in the sun, so Dante got a bit flushed and I wished I had worn shorts! (Silly to think that after hearing the weather reports for those of you up north. Chris said it was 15 in CT.)(it was. it's 12 right now! -cg)

We had another night of Carina crying in her crib at bedtime. It's been tough, because the last two nights she has not been tired, but I had to put her in there so I could get Dante to bed. She pretty much slept through the night last night, so wish me luck for another night of "sleep". I say "sleep" because Dante is in bed with me and he tosses, a lot. But he also snuggles too.

Doctor Day

We somehow fit in 4 doctor's appointments today. One for Carina for her flu booster shot. One for me - just a cleaning at the dentist. The other 2 were for Dante.

Dr. Patranella was very happy to see that Dante had gained 2 pounds since we saw her last month! He has not been sick since we started on the Zantac, which helped his appetite tremendously. We are now going to drop to once a day, for another 2 weeks and then stop all together and see how he does. Other than that, she said he looked good to go until his 3 year check up.

Next, we were off to the oncologist's. We didn't really see a doctor there today, just the physician's assistant. His ANC is still 2600, which is good. However, his hemoglobin is 8.2 - low (they transfuse below 8.) His platelets are still low - not super low, but still below normal. They took a lot of blood to run a variety of tests to see why he's anemic, and we'll be getting results trickling in over the course of next week. I'll have to take him in on Friday to see if he needs a transfusion or not. Hopefully not. I had said to Chris the other day, that I thought Dante seemed to be not feeling so well, looking pale and getting tired easily. Chris attributed a lot of that to his nap, or lack thereof, and the weather. But, the blood levels made sense. I sure hope they can determine what's going on. The list of possibilities as to the cause was interesting and stressful, and then the PA said, "...but none of these would be related to his therapy." Are you kidding me?! How can his blood be having trouble getting back to normal, and it have NOTHING to do with poisoning his body with chemo 5 days a week , every 3 weeks, for 16 weeks ? really.

Dante ended up napping afterwards, as the two appointments really wiped him out, which was good for him. He even went to bed on time, so he must have been tired.

Speaking of sleeping, we thought for sure we were doing good with Carina. She's been going down to sleep at the same time as Dante, waking a little bit here and there, and then sleeping most of the night. Last week she even slept through the night for 2 nights in a row. I didn't know what to do with myself! Then the weekend came...Carina has been up every night, all night, since Friday. Waking up every hour or two and not going to sleep unless I fed her. Last night, we finally brought Dante into our bed because she was screaming so much, and she cried all night long. I'm so sleep deprived right now, I can't remember what I'm doing half the time.

So, we will be having Dante sleep with us for the next few nights while Carina cries it out, or else I won't be able to function. Dr. Patranella swears that in her 20 years she has only met one baby that took more than 3 nights to figure it out. I remember her telling us that with Dante, and it was pure agony to hear (his crying, not her advice) - but it only lasted one and a half nights. Really. He has been a good sleeper ever since. It's just really hard with the two kids sharing a room, to avoid having them both crying when one of them wakes up!

Chris will be heading up to CT to visit with Gomma this weekend. We have music class, but other than that, no big plans, except trying to get some sleep!

Some photos from Chris and Dante's recent expedition to the aquarium:

Baby alligators!

What's that one?

Wall of water

Boy in fishscape

Uhh, there's a turtle on your head...

Beachy Day

Dante, Carina, Nonni and I ventured down to Casey Key to visit with Uncle Dick and Aunt Karen today. They were down from NC to visit Granny Mil and her niece, Laurie. Karen was laughing as I proceeded to unload all sorts of stuff from the car for just a day trip. I told her that this wasn't my first BBQ and that Dante would be happy! I didn't do too bad, as the only thing we didn't actually use was the extra sets of clothes.


I got out the pack n' play for Carina and I think Dante spent more time in it than she did! Perhaps the novelty. I couldn't get him to stay in that thing when I really needed him to! He did hang out in there and play for almost 45 minutes while Carina slept and I rested. It was a terrible day for the beach - cloudy, rainy and about 65 - but we made the best of it. Chased birds, got our feet wet, found shells, watched wakeboarders and generally ran around. Dante was smiling most of the day and just kept running back and forth out to the beach and back. Carina just had a good time as long as she could see Dante.

On our way home we stopped to say hi to Millie and had a nice visit with everyone. Millie's niece Laurie was prepared with presents for the kids that kept them, at least most of the time, away from all the breakables in Millie's house. Carina decided to scream almost the entire way home, but Dante was sound asleep before I made it to the interstate. I was wishing I was sitting in the back seat in a cushie seat instead of driving!

Dante and Daddy went to the aquarium this week. Chris said that Dante raced through the whole place and as soon as they got out to the car, he says "Dante see fishes under water and turtle..." as if he is describing what they just did. So Chris says, " Yep, that's what we just did and saw...", "No, Dante go back in!"