Randell Ramblings

Katie went for her dermatology appointment this afternoon. She saw 2 doctors who both have no concerns about her freckles/moles right now. They even mentioned that there is nothing "documented in the literature" that would confirm or back up the notion that chemo would cause this type of freckling. They did mention that she does have more freckles than the average kid her age and conceded that maybe there is something to it.

I am still glad that I brought her in for this skin check basically for the doctor to get a baseline and to calm my fears.  They want to check her again in a year.

Today, Katie had her 6 year checkup with her primary care doctor.

I still do not like Katie's primary care doctor and I REALLY need to make the time to find her a new one. I have been saying this since she was diagnosed in 2008!!! But, I figured she was fully under the care of Dr. Keuker, so I didn't worry about it.  Well, that really isn't the case anymore, so I really need to switch. But, I digress...

Mostly everything checked out OK with Katie today. 

She weighed in at 48 pounds with a height of 3 feet & 7.5 inches!

I told her doctor that she is ready to start catching up on her immunizations and asked if she had received the paperwork from the oncology clinic. To which she wasn't sure, but she would look into it.  OK, now Katie had her titers taken last OCTOBER...how could she not have received them by now??? UGH! I told her that the oncology clinic is recommending that Katie just get her regular 4-6 year booster, but that I wanted her to look over the paperwork to see if she agrees with that recommendation. So, we said we would wait to see what the paperwork says before doing anything.

Next came the hearing & vision test.  Hearing was fine, but Katie failed the vision test. She knows her letters, but when asked what they were from across the room, she couldn't see the smaller lines.  Poor kid, I thought she was going to cry. So, now we need to make an appointment with an eye doctor. Poor kid... She has already told me that she "WILL NOT WEAR GLASSES" because she thinks all the kids will make fun of her. UGH!

I told her we would talk about it after we find out what the eye doctor has to say.  So, we have tabled that fight for now...

***UPDATE 4/19
Katie's doctor called to let me know that she also recommends that Katie get the 4-6 year booster, which will be 4 shots...OWIE!!! She said that we could do it in a couple of visits or all at once, whatever we wanted to do. I told her that I would talk to Katie and let her decide what she wanted to do and that I would have to call back to make an appointment once I talked to her.

Probably sounds crazy to let a 6 year old make this decision, but after everything that she has been through, I figure it's good to let her have some say in what happens to her body. When I told her that she needed to get 4 shots, she started screaming and crying, but I told her that she could decide if she wanted to get them all at once or at 2 different visits. We discussed the pros and cons of both options, but she was too upset to discuss it too much, so I told her that she didn't need to make the decision right now and that she could take some time to think about it.

***UPDATE 4/24
Katie finally decided that she wants to get all the shots done and over with all in one visit. She took some time to think about it and every time we talked about, she would yell and cry.  But, after much deliberation, she finally told me this morning that she had decided to get them all done at once. I am so proud of my brave little/big girl.

Feels like forever since we have been to clinic. Katie's appointment was supposed to be on the 7th, but it got rescheduled to today.

We met with Dr. Usmani who went over the results from Katie's titers. She said that Katie will only need to get her regular 4-6 year booster, just like every other "normal" kid, which is great, I guess.  It does make me a little nervous that these immunities were not wiped out like they said they would be.  Makes me wonder what other cells may not have been wiped out....

I also brought up a concern about some of Katie's freckles.  We are hearing from other parents that these dark, mole-like freckles could be from the Methotrexate that she received and they may become a problem in the long run.  Dr. Usmani didn't seem overly concerned about them, but I am still going to make a dermatology appointment for her to be safe and to at least get a baseline. It is hard to know whether her freckles are from the chemo or are just genetic. I mean, I am covered in them, so it could just be how she would have been regardless of chemo. But, that's kind of where we are at with most things...we are left wondering things like whether or not she would be a faster runner if she hadn't had so much chemo, would she have an insane fear of safety pins had she not been stuck so many times over the course of her treatment, would she be such a strong, independent little girl had she not had cancer...We will never know the answer to these questions. At this point, it doesn't really matter...she is who she is and I think she is one truly amazing little girl.

At the end of the visit, Dr. Usmani asked if she was having any issues such as bed wetting. I laughed and said, "bed wetting? She is still in a diaper at night". To which, Dr. Usmani gave me a look like I am the worst mom in the world and asked "Why is she still in a diaper at night?".  This prompted a whole other conversation to which she suggested that I try a product called the Starbright System. Apparently these are underwear that give your kid a small electric shock when they start to pee. I couldn't believe something like this actually existed. This is one piece of advice I think I will ignore!!! GHEEZH!

Her dermatologist appointment is scheduled for Friday, April 27, 2012. and her next clinic appointment is scheduled for Wednesday, May 23, 2012.

OK, this is crazy!!!!

Disney allows you to book your dining reservations 180 days in advance. Online booking opens at 6am and phone booking opens at 7am.

I am NOT really a morning person, but I got up at 5:30am so that I could wake up a bit before trying to book our reservations.

Coffee - check!
Schedule - check!
Notes on where we want to book and what time - check!

6am comes and I am ready! Can't get in online - for some reason it won't recognize me as someone who has an "on property" hotel reservation, so it won't let me book my dining reservations...WHAT? ARE YOU KIDDING ME? JUST PERFECT!!! UGH!!!!!

So, now the anxiety is building in my tummy because I feel I am going to miss my opportunity...lol...is this rediculous or what?? HA!

7am comes and I call the ADR line. Get put on hold for a HALF HOUR!!!! Now, I am really not having a good feeling about our reservations.

7:30am - I finally get through and get everything we wanted without a problem...lol.

Cinderella's Royal Table - check!
Yak& Yeti - check!
Sci-Fi Dine In - check!
Crystal Palace - check!
1900 Park Fare - check!
and
Bibbidy Bobbidy Boutique - check!


Have a Magical Day Everyone!!!

Tonight, my little girl is having her first sleepover at her cousin Sophie's house.  I am a little bit nervous because she has never been away from me overnight before, but I know that she is in good hands!  I called at bedtime and she didn't even want to talk to me :-( So I know that they are having a blast. My sister in law said that they were so cute when they got ready for bed, they were both in the same pajamas and snuggled up together in Sophie's bed. So Cute!!!

We are supposed to meet them tomorrow morning at the St. Patrick's Day parade in Worcester to pick her up.

The Girl Scout Pledge!!!

Katie did eventually warm up to the music and dancing and she had an absolute blast dancing the afternoon away with her friends :-)


Other than dancing, there was also a craft and ice cream sodas for the girls to drink! I wasn't sure if Katie was going to like this drink because she doesn't particularly like soda, but she seemed to enjoy it for a little while :-) She preferred to be dancing!!!

Our adorable troop!