Tuesday, May 31, 2011

Yeah, so I'm bragging.

I know I haven't been very consistent. And I'm certain that all of you are sitting at your computer hitting the refresh button in hopes that I'll write something about our lives. You aren't. Good, that takes some pressure off of me. It's nice out and I'd rather be outside anyway.
Buuuutttt....there are things going on here still even if I don't write as much. So I thought I would fill you in a little bit. The things I am going to fill you in on though are the two things that are the biggest to us, and that we are really proud of our sweet little bug for.
First of all we ditched the night night undies. A week ago Sunday we just said 'they're all gone.' She had been staying dry at night for a while, started having occasional accidents, we returned the night time undies, and the accidents went from occasional to never staying dry, not even at nap. So we decided to push her a little and see where it got us. Sunday night was the first night. She woke up wet. I stripped her bed, put her in new pajamas and she slept on the plastic mattress cover. We didn't scold, shame, or get upset. The natural consequence for wetting the bed is that lambie (her favorite stuffed animal) has to be washed, and so do the sheets. She seemed unfazed and slightly proud of the fact that she had peed the bed. I was feeling a little like I was in over my head, but had committed to attempting it for three weeks.


Nap time we stayed dry. Mama went shopping that night and came home with some cool character undies. If they get wet then we wear our boring undies. If the stay dry you get candy, a sticker, and to wear those cool undies. Five stickers gets a trip to the toy store. Ten more sticker gets a trip to the Indy Children's Museum.
Guess who hasn't had a single accident since that first night. Our little bug is quite the rock star. She apparently just needed a little incentive. So 11 days in we have gotten our toy as well as earned our 15th sticker (5 for the toy 10 more for the museum) this morning for a trip to Indy. I was all out prepared for three weeks of sheet washing daily, and possibly even a battle. HA! This girly proved me wrong in the best way possible.
Our second huge source of pride. Abigail is starting to read. She has known her letters and sounds for a little while. I wasn't hesitant to start the next step because she isn't even three yet. But she was very interested and showing all the signs of wanting to do more. So I jumped in having no idea how to teach a two year old to read, and we are starting to get it. She can do 'an' words and 'at' words. (So can, ban, fan, and so on). She is sounding them out and then putting it together to make a word. Take that all of you doctors who said that she has lots of 'strikes against her' and will likely struggle cognitively. Doesn't sound like much of a struggle to me!
Enjoy the video of Abigail reading...I know you can't see the words she is reading, but hopefully you can take my word that they are the right ones. :)


video


Proud of our rock star little bug,

Monday, May 23, 2011

Taking a walk with Abigail.

He walks in the door and is greeted by the sound of little feet running towards him and squeals of delight. He scoops up the sweet little thing in his arms and gives her a hug and a 'fooch.' She gives him a sideways glance, pulls his hat off of his head, and erupts in giggles. He pretends to care and tells her not to do it again. This repeats itself over and over until they are both giggling so hard that I can't help but laugh too.

We all sit down to eat lunch before he has to head back to work. He kisses his girls and tells us that he thinks we are beautiful. As we wave goodbye I turn and ask her if she would like to go for a little walk. Although it's good weather for it, and I know she likes it, my reasons are selfish.

She says yes. We put on shoes and I let her carry the house keys in her backpack like a big girl.

Her little hand slips securely into mine and I feel that overwhelming feeling of being the most blessed person on the planet. We walk hand and hand for many blocks. We talk about the vehicles we see parked along the street, the animals we cross paths with, and the helicopter we see flying overhead.

She then begins to talk excitedly about something God told her. I don't understand all of what she's saying, but her story telling already mesmerizes me. The way she moves her little hands around, the inflections in her voice, and how when she thinks something is funny she will laugh as she's saying it. There is nothing better than walking hand and hand with this sweet little girl while she tells me stories.

The last leg of our walk is always my favorite. We turn the corner and can see our house two blocks down. She tells me 'take hand away' and then bends down to pick flowers. I can't believe that in our six years of living here and going for walks I have never noticed all of the flowers in this yard. She picks a clover and puts it up to her nose, 'fwell good Mama. Hew, fwell it.' I drink in the smell. It does smell good. She picks a dandelion, and then gingerly shifts both flowers to one hand while slipping her other hand back into mine.

I know that someday she will no longer want to stop and pick flowers, hold my hand, or say, 'oh my gosh you awe so butiful.' I don't hurry her along. I don't dismiss her stories as silly. I drink in every last moment so that one day, when she calls to tell me about taking walks with her little ones, I will be flooded with memories of the same thing, and will smile.

Saturday, May 21, 2011

Mastocytosis

I was waiting to post this past week because we were supposed to be getting some biopsy results from some skin taken from one of Abigail's mysterious blistery bumps. But alas, they didn't come in on time, so we wait.
It's been a weird week emotionally and I'm trying to come to grips with a few things. I have been trying to do a bit more research on mastocytosis. Late last summer we heard the word for the first time. I researched a bit. We saw a specialist (she sucked) and she said she didn't think she had it. We decided not to pursue anything more unless we saw more issues.
Fast forward just a tiny bit, and Abigail is diagnosed with GERD, something that could be caused by her low tone, mastocytosis, or just something that some people have. Never think twice about it.
Then after the removal of the tumor in April we hear that mast cells are the issue again. We aren't certain what that even means, soooooo....we make an appointment with a new specialist. And warm weather hits.
We are back where we were last summer. Abigail has lots of little bumps, some big bumps, they all itch, and unlike the usual 'allergy' things people get they all have blisters on them. She has no runny nose. No itchy eyes. No sneezing. Just itchy blisters all over her little belly, back, arms, and legs (and one on her face).
So I begin to research again. I read about masto. I talk to some other people with it. And I fight the words I keep hearing. Mastocytoma=mast cell disorder even if we don't see any other signs. And the spots all over her, look like a mast cell flare up. And the fact that they came just weeks after we had to increase her medicine because her GERD was causing problems, looks like a mast cell flare up.
So Thursday I began the descent into a fit of rage. I keep telling myself that it's perhaps a coincidence. Maybe the biopsy will come back as something other than mast cells. Maybe I'll be surprised. Then I'm interrupted by the need to give my daughter more benedryl to keep her from scratching until she bleeds.
I remember this emotion (all though much more intense it seemed) when we first learned about NF. It's the 'denial' aspect of trying to work through something new. It wells up from somewhere deep inside, and I believe that if I can just concentrate hard enough that I can will this to not be true. I can pretend away the facts and go on living.
But reality has a small grip on me during these thoughts, and I know for the sake of my daughter I must move forward and get answers.
And when wakes up from nap, I turn on some Nichole Nordeman on Pandora, and we dance until all I can do is enjoy myself. We dance until we are both laughing and I am full of joy. We dance until I realize, that even if she has another stupid label coming, that for now all is right in the world.

video

Sunday, May 15, 2011

Life.

What's going on you ask? Well mostly the same as the last post. We are spending time outside playing, planting our garden, weeding it, watering it, and walking around and peeking at everything to see if anything is popping out of the ground yet. We have been garage selling (one of our favorite Saturday and summertime activities). We have been reading lots of books, riding bikes, naming worms, and eating Popsicle's outside so they melt all over you.
Medically things are going okay here for now. Perhaps someone else will understand this story Wednesday morning my phone rang with a 'private caller' on the I.D. Some of Abigail's doctors show up as this so I answer. They are calling to remind me of an appointment Thursday morning. I start to panic because I don't think Abigail has an appointment Thursday morning. I asked who the appointment was with. She said the doctor's name and reminded me it was to remove my wisdom teeth. I am so used to every doctor's visit being for Abigail that it hadn't occurred to me that I had an appointment.
I did have my wisdom teeth removed (I was genetically blessed with only two anyway). Wasn't so bad. My right cheek is swollen and slightly green tinged like it's bruised, but I pull the look off well. And even if I don't you won't know because I won't be posting any pictures of it! The worst part thus far is living on soft foods that never make me feel very full.
The only other thing medically is that the return of warm weather has meant the return of Abigail's mysterious itchy blistered spots all over. And I can't seem to get her into the derm any sooner so we will likely be seeing the family doctor again tomorrow. I'm hoping they can biopsy a spot at this point so we can get some more answers. It is most likely they mast cell disorder that she most likely has that is causing it.

And as for some of the fun things of summer, Saturday garage selling. Aaaahhhhh! It's like a little slice of heaven to our family. We get up earlier than anyone should on a Saturday. Our first stop is McDonald's for large carbonated sugary beverages (and water for Abigail). The next stop is our local donut shop where we load up on some more sugary snacks and then drive to our favorite neighborhood sale. They do it twice a year and we always find some sort of awesome bargain there on something we have been wanting/needing. Saturday was no different. Jason's excitement was the weight set that was only $25. (Jason just read that paragraph and reminded me he is also excited about the jell-o egg molds he found that had designs on them.) Abigail's favorite was the kid's tool set she to picked out for $1 keeping her nighttime undies dry the night before. My favorite (and something I've been watching for, for a while) was the plastic drawers to organize all of Abigail's kitchen play stuff. I got them for free! So I was the winner of best deal. ;)

So that's our life in a nutshell. We are busy playing outside a lot so I may not write as much. Right now I am taking advantage of the rainy afternoon to relax, drink some tea, and update all of you.

Enjoying some down time,

Monday, May 9, 2011

Catching you up...

All right. I'm going to attempt to catch you all up in the quickest way possible.

1. Abigail is doing great. We are enjoying the nice weather of spring, and getting to be outside more.

2. We planted our garden with the help of a little one. She enjoyed putting the onions in the ground and watering it.

3. I turned 29 and my husband and daughter did a great job celebrating my life.

4. On May 6th I realized that we had passed the two year mark since first hearing about NF without me even realizing it. I'd say I'm doing better with it.

5. I had an awesome Mother's Day as well, and love the fact that my birthday and Mother's day are so close I feel like I get celebrated for a whole week.

6. Saw an orthopedist today and he said that everything looks great with Abigail. She is just a slightly uncoordinated two year old...and then he went on and on about her cognitive skills.

I know I should sit down and write more about our lives, but I'm really enjoying the no doctor's appointments accompanied with awesome warm weather!!!!