Oh my Avalyn...

Well it's 9 p.m. and tonight 6 years ago I was getting ready for the ride of my life (a.k.a. child birth)... my baby is going to be 6 in the morning...eesh- we are getting old!

Enough about that though. Good news for her birthday. After fighting with the lady at the doctor's office (she was new and rude..nuff said) they called yesterday and let us know her blood came back in all normal levels. So what that means is that although her kidneys are being, well for lack of better word- dumb, they are not affecting any other systems in her body. In other words, there is really nothing to treat. It is not uncommon for this to go on for months or years without ever progressing (now they tell me) into kidney failure.

So... we will continue to do weekly urine tests until we have two clean weeks. Then it goes to monthly, and so on. I am not going to report each week so you can assume that no news means same or better.

Thank you times a million for everyone that has been diligently calling and asking questions, it means the world to know that y'all care so much about our baby, like we do. Now is time to celebrate though..... Happy Birthday to Avi!!!!

Oh and HAPPY HALLOWEEN TO ALL OF YOU!!!

Avalyn Update

Well, I think I have this thing figured out. (hahahahaha).. So the good news is her blood pressure is normal. However, her urine still has blodd and protein in it but the levels are not increasing. They had a medical student who is studying HSP there today and she did a full overview on Avalyn, then the regular doctor did her once over as well. Dr. Bledsoe says she had a little boy a few years ago that went on this way (blood & protein in urine) for a year and a half and then one day it all went away and he was fine. They suspect that is what will happen with Avalyn. Meanwhile, they did a full blood panel today..CBC, Renal Panel, Mono test, etc. They are testing for a number of illnesses to see if there is anything that needs to be treated before kidney function will improve. They also mentioned that her lymphnodes are slightly swollen which could indicate an infection (blood will show).

So the bottom line is her kidneys appear to be functioning well enough that we do not need to go in to panic mode (lmao.. they tell me this now....) but they are going to continue monitoring her without treating anything if or until there are additional symptoms to treat (.i.e blood pressure, illness, infection, or if the blood shows something her blood pressure and urine did not.)

Halloween Comes Early

Friday night was the Simards' First Annual (lol) Halloween Party. The party had a great turn out, everyone was there. From Bin Laden to Sarah Palin, witches, angels, devils, priests, old ladies, and of course the blood-suckers that threw the party, everyone but Obama was equally represented.

Avalyn was excited to get dressed up and hang with some friends, Piper fell asleep about 15 minutes after the first guests arrived. I have a new recipe that was awwwwe some.. it's a pumpkin pie dip that is basically canned pumpkin, powdered sugar and cream cheese mixed together with some cinnamon and pumpkin pie spice... OMG.. good stuff with cookies.

Overall, it was a great party. I think it was the first time I have been able to let my hair down without freaking out about Piper. We were pleased that a bunch of our neighbors showed up and some guy that looked like Jon too (one of Jon's co-workers came dressed as Jon..hair style and all).

This is going to be a busy week. Tuesday afternoon is Avalyn's doctor's appointment, Wednesday she gets to trick or treat with her troop at the Brighton Care Center (Nursing Home), Friday is her birthday and Halloween (last year she had more fun giving out candy than trick or treating) and Saturday is her birthday party...fun, fun, fun. So for those that call me.. forgive me if I am a little dishoveled this week! Love you guys... thanks again to everyone that has been keeping tabs on Avalyn, I know it sounds terrible but it makes me feel better to know I am not the only one freaking out. BTW I finally got that call from the doctor's office; they advised me that they are taking direction from the specialists at Children's Hospital and that on Tuesday if her tests are abnormal she will be sent to CHOC (Colorado has a CHOC too) for further evaluation. Sounds scary but at least we know they are looking out. oxoxo

Avalyn Update

First, the funny part of the story.

So this morning as Avalyn is leaving for school we go in the bathroom for our weekly "urine collection" and of course.. she can't go. Finally, as she is almost late for school I get just enough. I put the lid on, put it in the "black bag" and Jon and I take her to school.

We come back from dropping her off and grab the pee only to find the lid wasn't screwed on so... it spilled all in the bag. Argh...

Good times...

So after school I took her over to the doctor to get it tested only to find.. yet again, her blood and protein levels are up. Her doctor wasn't available so as of right now we are scheduled to see the doctor next Tuesday (ahhhh... I don't think I can wait another week to find out what the heck is going on).

The doctor is supposed to call me before then to talk about what's next but I am still waiting.

Here We Go....

Well, well, well.. I have been threatening a blog site for some time and when I realized how easy (and free) it was I knew the time had come. This site will house a variety of blogs. Mostly, it is going to be for family photos and updates; however, for those that know me (or have seen my myspace) you know that I love to write my epiphany blogs as well. So.. there will be some of those every now and then.

So to begin with I'll give you the latest scoop on us crazy Simards.

First Jon... he has gone off the deep end but is the idol of neighbors and crossing guards alike. Our house looks like something out of a horror movie but I am certain it will grab us some gift cards when we take first place in the Halloween decorating contest yet again...

Aside from that he is still managing for Costco. He actually has a schedule I can live with these days and it's nice. It may have taken us almost 10 years but it seems we are finally establishing some sort of home life routine. OH crap.. We're growing up!!!

Next on the list is Avalyn. Avalyn turns 6 on Halloween and is jumping out of her skin with anticipation for her birthday and Halloween.

Avalyn just finished her first round of soccer and it seems she is hooked. Not to mention, she is really good. Must be those long legs of her's but she kicks some bootay at the defense. I can't wait for the warm weather and soccer time to return.

Avalyn seems to be at the end of this "freak illness" as I have resorted to calling it. For those that haven't heard the whole story, right before we left for California last month she came home from school complaining her legs hurt real bad and that she had mosquito bites all over. Turns out they weren't mosquito bites. We took her in the following day (the day before we were to leave for California) and (Thank God) they diagnosed her within ten minutes. She has what's called Henoch Schonlein Purpura. The condensed version of what that is goes like this: is a systemic vasculitis (inflammation of blood vessels) ...
Typical symptoms include palpable purpura (small hemorrhages in the skin), joint pains and abdominal pain. Most cases are self-limiting and require no treatment apart from symptom control, but the disease may relapse in a third of the cases and cause irreversible kidney damage in about one in a hundred cases.[1] The exact cause of Henoch-Schönlein purpura is unknown, although it may occur after certain viral and bacterial infections, as well as an adverse drug reaction to some medications. (Wikipedia, 2008). "

HSP typically lasts 4 -6 weeks and we are rounding out week 6 and the rash seems to have disappeared. I should back track a minute and explain that Avalyn has had "kidney involvement" on this illness. Nothing major, but her urine tests have come back with blood in them and then it went away and then it came back with a vengance. It seems to have cleared again but she will continue to have her kidneys checked regularly for at least one year.

The current situation is that last week's test came back 100% clear (HOORAY) and she will be tested again tomorrow. If tomorrow's is clear than we get to wait a whole month (as opposed to the current weekly testing) before having them tested again.

Meanwhile, as Avalyn is great at.. this entire time she has been in fantastic spirits about the illness. In the beginning (while we were in California) she had the swelling and arthritis (another complication of HSP) bad and she still went on as if everything was peachy. She's a trooper, that's for sure.

She's also joined a Girl Scouts' Daisies Troop and loves it! Stay tuned for cookie sales in January!!!

On to little Miss Piper. Piper is about to hit 11 months and (thank goodness) is not walking yet. She is crawling, standing and is likely to walk any day. She's still the little sweetheart she's been since birth but I think she is starting to get the family sense of humor even. She only says a few words but babbles on full conversations with everyone. She's still a little runt... fitting into her 6-9 month clothes still which is hard when it's time to buy winter clothes but I have no clue what sizes to buy.

Not much else to report on Piper. She's cutting teeth like crazy and miserable when that's happening but otherwise she is a good baby. And when she's not being good, that smile and her cuddles make up for it.

And a little about me... I'm in my 4th block of classes through University of Phoenix and they are kicking my butt. I finally lost that 4.0 I've been braggin about thanks to (go figure) my tourism class. So at a 3.83 I'm scared in my current classes. I stink horribly at Environmental Science and Cultural Diversity is a little whacky too. But.. I'm getting there.

After school I am still madly addicted to Photoshop and digital scrapbooking. I am doing my best at this domestic life.. but I am sure I could be doing a lot more.

Well... stay tuned and I'll be getting pictures up soon.