Thursday, July 30, 2009

Under the scalpels

Yeah well, this has been the summer of dermatologist and plastic surgeon visits. All in the name of mole removals. First John (off his head), then Sarah (2 off her neck) and finally me (off my back). The only one left is Jimmy, but being in his 20's he keeps putting it off and as I cannot literally drive him to the dermatologist since he lives so far away, I can only ruminate about it. Grrrr.

Anyway, John is all healed up and all tests are clear. Yay for him! Sarah and I are still sporting steri-strips and bandages and waiting for all the biopsy results. Yes, lots of fun in this house!! Lucky John, he gets to change mine every day. What a guy!

Wednesday, July 29, 2009

Day to day for now.

Hey! I've been busy working and hiding from the heat. But we have managed to get to riding. These pics are from today. It was hot, hot, hot. But she did well. It's almost time to move to a new horse. Very exciting!
It's hard to believe she will shortly turn 13! A teenager. My last teenager....





Monday, July 20, 2009

I was surprised, for sure!

Well, it was wild. That's all I can say. Unexpected and overwhelming.

Are you wondering what happened?

Well, today, Monday, is my 50th birthday. The big 5-0. Which is all good. Not THAT much of a big deal. I like going into new decades. Each one is better than the last. I didn't have much planned, just to go out to dinner this past Saturday night with my sister and a few girlfriends. No big deal. I don't really get out that much so it would be a treat for me. So I got Sarah into bed and one of my girlfriends picked me up, her daughter offered to watch Sarah, and we headed over to my sisters to grab her before moseying over to the restaurant.

Except...

When we pulled up to my sister's house there were all these cars.....and 70s music...and balloons.....and people! It was a party! An old-fashioned surprise party...for ME! I was shocked. Everyone was happy and cheering and I was speechless.

I was trying to absorb this tidal wave of excitement in a few split seconds when briefly my eye caught a face on the other side of the porch. Could that be my son Jimmy? No, It couldn't be, he's down in Washington, he hasn't been home since Christmas, he couldn't be here? Could he? ...Could he?... And then I looked harder. At that moment I realized that it WAS him and I burst into tears. I lost all dignity. I was a mess. In front of all these wonderful people (friends and family, but still...) crying like a baby on Jimmy's chest. Good grief. :)




After I pulled myself together we all had a great time. There was a beautiful cake with one of my baby pictures and big pink roses on it. And a slide show! Great food and wonderful, sparkily gifts. Everyone was there. It was the best. I cannot believe how secretive and deceitful those around me can be! I am very impressed-lol! A lot of planning went into this and it turned out so perfect. I was entirely, completely surprised. My sister outdid herself.




My brother and myself





Destiny




Jimmy and John







John and my nephew Gavin







One of the best parts was that I did not have to worry about Sarah. She was happily tucked into bed, singing her happy songs and falling off to sleep, under the watchful eye of a lovely sitter. I am so thankful for that. It left me free to enjoy the party and everyone there.



So there you have it. Good times.

Saturday, July 18, 2009

Time

It takes 'forever' for me to give Sarah a bath and hairwash. And this must be done often, frequently, over and over, endlessly and repeatedly. And so on. And on. Whew!
There is lots of lifting and leaning over and soap and shampoo. And it all goes so much more smoothly if I have a cooperative young lady. I have discovered that there are definately more 'happy' baths if I take my time and don't rush her. We go, ever so, S-L-O-W. We take a lot of breaks. Breaks where I actually leave the bathroom and let her sit there and relax. Soon I hear her singing to herself and I know she is ready for the next chapter. The whole kit-and-kaboodle takes at least an hour. At which point she is finally laying in her bed, all dressed, with her wet hair on a towel. And then she needs to lay there for about 1/2 hour before she is able to gather her strength to go on with the day. I tell you, it is quite the event. And lucky me? I get to do this All. The. Time.

But the smiles you see below make it all worth it. And I am lucky.


Wednesday, July 15, 2009

Here come the curls






Do you see them? I just cut 2 inches off Sarah's hair last night and TaDaaaa! There they are! I have missed them. Sarah had long curly hair when she was up to age 3 and I gave her the first big haircut. Then they were gone. Little waves here and there but that's all over the past almost 10 years. But...they have returned! How fun! My son Jimmy had the same thing happen. Curls when he was a toddler, then his hair went straight and now a head full of curls when he lets it grow out a bit :) Isn't that crazy? Anyway, it's cute on Sarah. Lots of loops going this way and that. Bouncy. Flouncy.

She went to the dentist today. No cavities and all looks good. Her Aunt Ali happened to be there also so she hung around to see how Sarah did. She was impressed with our girl :) Just gotta get to the orthodontics now.....

Friday, July 10, 2009

Some test results


So some of the bloodwork results are in. So far, everything is 'normal' except one. One. I am so used to there being all normal results that it is a bit startling when something pops up. One thing. One teeny, tiny, little thing. One tiny little duplication on one of her chromosomes that is 'a variant of unknown significance'. Meaning, they don't know if it is causing any of her issues because they don't know what that teeny, tiny part of the chromosome is responsible for.
So now what? Well, as I wait for the rest of the testing to be completed, her father and I will be tested to see if either one of us also has the same little irregularity. If one of us does, then this duplication is irrelevant, because it clearly has not affected us(ie we are walking, talking people-lol). If neither of us has it, then there is more of a possibility it is indeed problematic for Sarah.

There. Got that?

So what is my prediction? I will go out on a limb here and say that one of us does have it, meaning it is not the cause of Sarah's issues. And why do I think this? Because I know she has Rett Syndrome. I. Just. Know.
Even if they cannot find the Rett Syndrome marker in Sarah on one of her X chromosomes this time around, it will be found eventually. One of these years.

What are the odds that this duplication they have found presents exactly like Rett Syndrome? Close to zero I will bet. Of course, you never know for sure because all of this research is so new and constantly evolving.

So we shall see.
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