Dance

I don't know if he would like me posting or not, but it makes me happy.  I like watching him dance, even if it is through the Wii

Henry Swimming

 

Henry has been doing swimming lessons and he has improved so much. It is fun watching him. Here, you all can watch him too!

6 months after radiation

I recently went to the neurosurgeon for my 6 month post radiation visit, which was 1 year past surgery.  Before I went and saw the doctor, I needed a brain MRI. Let me tell you, I am very sick of brain MRIs!

I did all the usual, checked in, got into scrubs, got an IV, then I was shoved in the tube, again.  I kept thinking about how many times I have done this before (5 or 6) and how much has changed since then, and how much depends on the scan. It's something I don't like dwelling on, and usually I can be pretty practical, but when you're stuck with your thoughts for an hour, well, it can get to you.

Luckily, my meeting with the nurse practioner in neurosurgery was right afterward.  I headed up and was promptly seen. Normally at this stage of the game, they are happy if everything looks the same, stable and good.  My tumor was actually showing signs of involution and the middle had a little more loculations and less intense signal than before. It is a really good sign!

I left the office feeling hopeful after a pretty emotional day.

Later, I went to the audiologist to recheck my hearing. I felt like my hearing aid wasn't working as well as before.  Well, I was right, my hearing is worse, much worse.  It is gone, caput, fineto!  So long right ear hearing! There is now no hope for sound localization for me.  It's taken me about a week to accept it, but I have. I know this whole journey could have been much much worse, but I still miss my hearing (a lot).

But, I bit the bullet and ordered the cross cover hearing aids. This is the one that takes sound from the right ear and puts it in my left.  I haven't gotten it yet.  Since I have been waiting, I went to a church function and felt the whole implications of my hearing impairment. I was working so hard just to concentrate on who was speaking and not on the background noise.  I missed a lot of the speech, especially if they were on my right.  There was even one time I was non-shallantly cupping my left ear so I could hear more.  I felt like I couldn't relax. I had to keep my guard up and constantly be aware.  Aaron had a really good time, but I didn't. I left the night feeling....so this is what it's like.  Not happy with reality.

Well, really, things will get better with the cross cover hearing aids. Hearing shouldn't be a problem, but the localization will, and forever will be gone. When people in a group are talking, it is hard for me to know which one it is, when my kid drops a game piece on the floor I can't find it,  when my kid runs away from me in a store....

Ok, I'm wading in my misery a little. I need to stop it.

Twice this past week I have been contacted because someone knows someone who has the diagnosis of acoustic neuroma. I have been happy to talk with both of these people, and if I can ease their transition to this new diagnosis and make things a little less scary, then it is good.  I guess I just should remember the good.

Franny's story

 Frances just recently got inspired. Renae gave us a pack of blank books that we finally opened and Franny wanted to write a story. I went to work as she was writing it and when I came home, it was all finished.  I loved it!

Aaron wrote exactly what Frances wanted. He then said she could draw a cover picture. Instead she chose M F A H (mommy, Frances, Daddy and Henry). I swear she called Aaron Daddy and not his real name.

It's a little dark and Aaron's writing is not the best, so I will put the story in the captions:  Once upon a time, there was a baby and a child, Frances and Ruby with their Grandma. Frances wanted to bring her dad but her dad wanted

to wait for a second, so she just ran into the woods all by herself. She was crying and then she ran home. And then she got lost and she didn't know which way, but she was still crying And she changed her mind. She was thinking about an animal who can

run really fast, so she imagined that a cheetah was in the forest. And then at the rainbow she saw her home and there was a cheetah running really fast at her. She got on and told the cheetah to take her to her house The cheetah said "OK." Frances said "There's my home"

and she pointed to it. The cheetah said "Ill go to it. I can run really fast." Frances said "OK" Daddy said "Where is Franny?"  Frances said "What did you say? Monkeys were jumping on by bed and bothering me. I told them to stop but they wouldn't listen to me. Were you

trying to sleep?" said Daddy. Frances said "What? What is this? Is this a volcano?" And the papa said, "yes."
The End

Isn't that about the sweetest story from a 3 year old?  I thought you all would like it.

Henry's birthday

 Since Henry's birthday is on Halloween, it is always extra special on that day. I don't know why, but both Aaron and Henry wanted his party on his actual birthday. I had to work until 12:30 so it was a tight schedule, but Aaron did all the research and preparing and made things happen.  Scrambling for a party venue, we found a great store in Linden Hills called Heartfelt.  I recommend this to anyone without reservations!  She had a  premade birthday party where they would make swords, have a scavenger hunt and shoot crossbows.  Not this is totally up every 8 year old boys alley, but it was even more so for my Hanky.

 I really think this was the perfect place for the party.  All of Henry's friends are so well behaved and creative, everything went without a hitch. They started the afternoon with a little discussion on what was going to happen and the different steps they would take.  I was still driving during this time, but apparently the parents were a little rowdy and needed a talking to. I'm a little glad I missed that point When I got there, all the kids were paying attention and EVERYONE was quiet.

 The first thing they did was decorate their swords. It was done with a waxy crayon tip thing that also had some metallic on in.  My personal favorite was the Griffindor sword that one of Henrys friends make.  Every sword looked great and so unique.

 Once they colored the swords, they got a leather hilt on them and jewels were placed on the handle.

 After a quick snack, it was time for a treasure hunt. There were small jewels hidden in the store for all the kids. They got baskets and each had to find 7 jewels.

 Here you can see all the great swords they made.

 After some face painting, it was time to test out the swords. I am happy to report that no one got injured and everyone had fun.

 Next they fired the cross bow into a fake tree where holes are present. Everyone waited so patiently for a turn, and when Frances actually got her arrow into the hole, all of Henry's friends clapped..  What a great group of friends!

With Henry getting another year older,  it makes me even prouder to watch what he is becoming. He is a very kind, sensitive and caring young man.  He does great in school, loves sports and even loves crafting with his mom.  I mean, what more can I ask for?  Nothing, he is the best!

Goodbye Pacis

Unlike Henry, Franny was a pacifier kid. She wanted and got them pretty much all the time until we eventually switched to only using them for naps and nights. It had been that way for quite awhile, with her attachment to them never waning. Laura and I had felt for awhile that we needed to stop them entirely soon, and had talked to her occasionally for a couple of months how she'd be done with them at some point. She didn't like the idea, but we told her she could choose a toy when the time came. On October 24th, I got to sleep in while Laura was up with the kids, and when I got up I was informed this was the day. Franny wanted to go pick a toy. She chose Tinkerbell and Periwinkle figures. Since Henry never got an end of paci toy, he got to choose one too and picked Rock 'Em Sock 'Em Robots.

I wanted Franny to understand this was 100% the end, and also not allow the possibility of us giving in, so I chopped up her pacis in front of her and threw them away. She didn't care at all as I did it. She didn't take a nap that day, which was not super unusual, though she was taking naps more often than not at that point. Bed time was of course a little difficult. She moaned the word, "paci" over and over, but almost in mourning more than as a demand. She cuddled between Laura and me on the couch and moaned pitifully but got to sleep fairly quickly. I carried her to bed after awhile, and we had no idea what to expect for the night. She made it to 3:00 before she woke up extremely upset in that out-of-it way. Laura tried to console her for a long time without much luck. Eventually Franny said only watching a show would calm her down. Sounded like a bad idea to me, but Laura turned on the iPad with her around 3:30. Franny did calm down and went back to sleep after they watched for about half an hour. Was a good idea after all. The next night it was slightly difficult to get her to sleep, but she slept all night long with no problem. The next night was a little easier, and then it was pretty much a non-issue at night.

Unfortunately though, naps have pretty much gone out the window without pacis. I'd be OK with this if it weren't for the fact that she seems to still need naps. She had very few meltdowns before, but since the naps have stopped, they've become common. It's been two weeks without a paci now, and she's taken one real nap, with a couple of short snoozes in the car, in that time. Still adjusting to a new sleep schedule. Mostly she's still sweet Franny, just with some bonus fits of exhaustion fueled unreasonableness and tears. Time keeps marching on.

Halloween 2015

Princess Elsa & MegaMan got their trick-or-treat on in Hopkins with Dad, Grammy, & Poppy. (Princess Elsa kept her face paint on from MegaMan's birthday party that afternoon.) So much excitement and cuteness, such as Franny starting to yell "trick or treat!" from the sidewalk as she runs up to a door.