Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, April 30, 2007

Lack of organizational skills...HELP?

I wish I could figure out how to get the newer posts to the bottom of the page, and the old ones at that top. Instead I have to tell people to start reading FROM THE BOTTOM of the page. That is just backwards!

Anyway, we are sick here. Angela and I both have strep. She's just tired, while I'm running a fever and pretty much a mess. Sometime during the night Dean was talking to me, but I was hallucinating and thought he was Yira, warrior princess. I have no idea where that come from, but...well...Dean doesn't make a very good warrior princess.

There is a lot to do today. First, the floor guys are supposed to be here at 7:30 to put one last coat on the wood floors. I promise not to mess them up this time and won't set foot on them until this time tomorrow morning. What I'd really like to do is get a hotel, but finding one that will take 3 dogs and 8 puppies might be tough.

10:00 I'm supposed to take Zurri for her level I obedience graduation. Not sure if I'm going to or not. I'm no longer contagious, but I feel like crap. We'll see.

Sometime today.....I need to take Angela to Minneapolis childrens to get hip films and a ton of blood work done. We need to see if her funky gait has affected her hips at all. And the blood work...I dunno, there's a whole list of stuff they're looking for. Some commonly related to DS, and others not so much.

Tonight if Angela is feeling up to it is Special Olympics track and field practice. She loves this!!! Some of her best friends from school are there. She is completely independent while there and rarely has any behavioral issues, which makes me go hhhmmmmmm. But it's already warming up here and since she doesn't sweat this year might prove to be a tough one for her. Last year we had to drop out after the area meet because it was just too hot for her to attend practices.

Amongst all of this, there is a litter of puppies to care for. They're growing fast and their families are so excited to find out which one they're getting. I have a couple matched in my head, but won't make anything final until next week when they've reached 6 weeks old.

For me, today should be a better day. I'll be too busy to do much thinking about anything. You know what they say about "idle hands". Mine certainly won't be today. Thanks so much for thinking of us, and praying for us. I don't think I can wait till Weds to talk to the Neurologist. That is just too far away. I'll try him today and see if he's heard anything from the other dr.s and if he's had time to research whatever it is he was looking for. I'm thinking it was a needle in a haystack.

Sunday, April 29, 2007

WHAT????????

I think the doctor thought I wasn't hearing what he was saying. I know my face was blank. Often when parents receive devastating news, their brain stops processing information at that point, and they don't hear anything else the doctor has to say. I think when he looked at me and said, "This is a grave situation" he thought I'd gotten to that point.

But I was hearing him, this doctor whom we've been seeing for 11 years. In fact, it was 11 years ago this winter that I first heard the term, "Moya Moya disease" from this very doctor. But this time, I expected him to say the disease had finally progressed to the point of needing to do surgery. Instead I heard something much different. Instead I heard, "We can't do anything the way it is right now. If it were MMD in the classic form, we could operate. But this isn't classic, and it leaves us in a very difficult situation."

I asked the couple of semi-intelligent questions that I could think of, and we were sent on to the appoitment desk. There were some films and bloodwork that needed to be done...THAT DAY. As Angela and I reached the appointment desk, I handed the nurse a form I'd been carrying with me for 3 days. It was a new release form authorizing the Neurologist to contact one of our other specialsts ASAP to fill her in. As I handed it to her and explained what it was, I lost it. I became a blubbering puddle of tears that was unable to talk. I managed to squeak that we'd come back on Monday for the tests. I couldn't do it today.

I couldn't do it that day because what I really needed to do was get to a phone. My cellphone isn't working at the moment and I needed to tell someone. I needed to call Dean...my rock...and I needed to call my mom....my anchor. Since I didn't have a cell it meant waiting till I got home. A whole hour....

I dropped Angela off at school and her teacher asked how the appointment went. That's all they needed to ask to send my over the edge. I told them the news then went home to call Dean and Mom.

Now that I've had a couple days to process everything, I'm finding myself thinking all sorts of crazy (and sometimes dark) things. For instance, I had to run pick up my check, and while driving had to wait at a light for a funeral procession. I found myself wondering if I should be setting aside money for funeral costs? My friend who's son has A.L.L. (a form of leukemia) said this is normal. In fact, she has sat in church and thought, "I like this song...it would be a good one for a funeral."

The strangest part of all is that our life has not changed. Other than adding aspirin to Angela's medication regimine, things are still the same. She's the same kid she was on Thursday. When you get a scary diagnosis, shouldn't something change? Like suddenly you have more doctor appointments for some kind of treatment. But so far, nothing has changed for us outwardly. Inwardly there's been a lot of change for Dean and I. Suddenly we know something about Angela that we never knew, that is following us like a big dark cloud, all knowing.

There are good things that have changed. I understand the behaviors now, and that Angela is in pain all the time and we didn't know it. (though we've suspected it for a long time) It's much easier to be patient with a child who is in pain and acting out because of it, than with a child who is just acting out for the sake of being mean.

So where do we go from here? We wait for the Neurologist to call. He promised to do so by Weds morning. He wanted to talk to the Neurosurgeons in Boston, and at Mayo to see if they had any brilliant ideas. Until then.....we wait....we watch....we try not to be paranoid....Most importantly we love our little girl and cherish every moment we have with her. We could have days, weeks, months or years, but we will cherish them.

Angela videos

Here are some cute Angela videos. She's such an amazing kid. You'd never know by watching her all that she's gone through, or will go through.

April 25, 2007
View this montage created at One True Media
Angela shows the puppies


Special Olmypics 2006
View this montage created at One True Media
Special Olympics 2006


Angela in Jr. Dog handling class, summer 2006
View this montage created at One True Media
Angela Jr Handler class


Angela's Special Olympics Team
Spring 2006
View this montage created at One True Media
The RAVE

A grave diagnosis

I guess it's time for me to start blogging on a daily basis. I need to be able to keep my thoughts together, and to keep people updated without spending double the time to do it.

Some of you are from my forum family and already know. Others are just stumbling upon my blog. So, here's a post I made to my forum family on Friday, April 27, 2007.
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Early this morning we had Angela's appointment with the neurologist. Since her MRI was done a couple weeks ago and I hadn't heard anything, I'd decided that "no news is good news". And then a few days ago I realized...hmm...when her EEG was done they called me in a couple days to say it was normal. When her EKG was done they called me in a couple days to say it was normal. I haven't heard boo about the MRI....and now I know why.

I really didn't think it was possible, but what Angela has is worse that MoyaMoya disease.

In Moyamoya disease, there is a narrowing (sometimes blockage) on the internal carotid artery in the brain. As the narrowing progresses the brain, being in short supply of blood and oxygen, will start to create new blood vessels that kind of search out new blood supply. When this happens they can do a procedure, (very basic explanation here) that gives the brain a new blood supply to leach onto to. It's major neurosurgery.

So, as an infant Angela was found to have a narrowing on her Right carotid artery. But there was no revascularization, however her SYMPTOMS followed those of MMD. We've watched her all these years. About 3 or 4 years ago she started having TIA's (transient inschematic attacks, which are basically like mini-strokes.) but her MRI showed now changes in either the narrowing or revascularization, leaving everyone puzzled.

About 4 weeks ago she started having what are called "Tripping spells". Apparently these spells are indicative of a new blockage, so we repeated the MRI.

The MRI results are devestating.

Angela now has a significant blockage on her LEFT carotid artery that was not there before. It is WORSE than the original blockage on the right. There is NO revascularization going on. THAT is the worst part of all. If there were revascularization starting, we'd have an operable situation. Without the revascularization, the problem blood vessels that are located in the brain stem are not operable.

In the 4 weeks since the Neuro last saw her, Angela's gait has changed significantly, and it's because the right side of her body is now affected as well. Her speech is somewhat more difficult to understand. Her pupils are uneven. She is very tired. He said the behavioral issues are most likely because she ALWAYS has some level of a headache, and the escalations are problably when she's at more of a migrain level.

He is contacting the Neurosugreons in Boston and Mayo who specialize in MMD and have more experience with the disease in kids with DS to see if they have any thoughts. All of her records are being sent to each of them. All the rest of her symptoms fit MMD, the narrowing on both the left and right Carotid arteries fit MMD, but the lack of revascularization has him puzzled.

Angela's biggest risk right now is a massive stroke. A massive stroke on the left side of the brain at the level of the brain stem will not be survivable.

I am in shock and numb. I have known for years there was something more happening. In the last month my stomach has been in knots knowing that there is something more. But I expected him to say the MMD had progressed to the point where it's time to do the surgery. I didn't expect to be told it's likely there is nothing they can do.