Have Fun - Help Babies!

Sounds like a win win to me!

As most of you know, I am a member of the Family Advisory Board. This boards focus is helping parents with children in the St. Joe's Neonatal Intensive Care Unit (NICU where Elizabeth spent the first months of her life and received the most amazing care)

There are two wonderful fund raising opportunities coming up soon and I wanted to ask for any assistance you can give.

The first event coming up is Shop For a Cause. This is a fundraiser hosted by Macy's. I am selling a 20% off coupon for all purchases and 25% a single item (some exclusions) for the day of October 17th. The ticket is $5.00 and the proceeds go directly to the Family Advisory Board.

The second event is the 5th Annual Silent Auction and Fashion Show. This is an amazing evening that features NICU graduates as models. The show is on Thursday, November 12th. The silent auction and reception begin at 5:30. The fashion show begins at 7. The event will be held at Washtenaw Community College in Ann Arbor. The price of admission is $25.00 and the proceeds go directly to the Family Advisory Board. The girls and I will again be models!

If you are interested in supporting our cause please contact me for tickets. If you are unable to attend the Fashion Show or do not shop at Macy's, but still want to donate, please let me know.
You can email me with any questions or to donate or leave a comment.

It is important for our group to continue to be able to support the many families that go through the NICU each year. Your support is greatly appreciated!

My Fashionable Girls!

Fall Fun!

Lots has been going on here but here are a few highlights-

Ava's first day of school

Fall Soccer

And of course our annual apple orchard trip- we got a little wet but still picked our apples and bought the very important doughnuts!

Developmental Clinic

Elizabeth had her last developmental clinic visit in August. This is a clinic at our hospital the evaluates low-birth weigh babies and others who may face developmental challenges.

It really came as no surprise that Elizabeth did great. To be honest I knew that she would do well, but there is always that little seed of doubt.
After two hours of "testing"; Elizabeth scored in the normal range for cognitive and superior for language skills! Based on what they saw they don't foresee and learning problems in school- We shall see- I was several weeks late and can't spell or do math with "letters" or at least with more than one letter!

Before she was born I was given the "what to expect" speech with statistics and typical outcomes for babies born so early. I was told- she probably would not survive- about a 20% chance. IF she did she would have (not she might, but would) significant delays in something. She may not be able to see, hear, walk, or maybe just have serious learning problems. I am not saying there aren't lasting problems with her traumatic entrance into the world, they just are not those ( I do need to add that without the laser surgery done on her eyes she would have been blind). I also know what a miracle that she is and that MOST micro-preemies have very serious issues in many areas. Depending on what study you look at Elizabeth's outcome is between 1-9%. It is hard for me to think of it in these terms and I really don't like to. Survivors guilt? Maybe? Perhaps it is just another reminder of how close she was to NOT being here and how easily her life could have gone another way. For now I am happy just to remind myself when she is especially "out of sorts" that she is a miracle and I should just be thankful that she just painted the wood floor green!

and of course we followed up of clinic visit to where else but the NICU to visit some fantastic people!

Showing everyone her Disney picture

We love the St Joe NICU staff!!!

From the Backseat

We have been on the road a lot the past few weeks. Here are a few things that we heard in the back . . .

Ava- singing "The Lion Sleeps Tonight"
Elizabeth- no singing please
Ava- still singing
Elizabeth - quiet!
Ava- looks at her and continues
Elizabeth- I no like singing!


Elizabeth takes off her shoe and holds it to her ear
"Hello? Mickey Mouse? This is Lizabif!"

Me- what are you doing back there?
Elizabeth - just picking my nose
Me-thats yucky please stop
Elizabeth - OK Mommy

on our way hone from church
Elizabeth asks Ava to hold her hand in the car, shakes it and say "peace be with you"

Matt- look cows!
Ava- oh yeah!
Matt- did you see them Elizabeth?
Elizabeth - I saw sheep (there were no sheep)

Ava- I'm tired of driving how much longer

Ava- as we just pass the last place to stop "POTTY! I need to go now!!!" or "I need to go potty, but I want to wait to we get home" (home was usually 5 hours away)

Ahh the joys of road trips, the cars are a mess, car seats look worse, but we had a great time visiting with lots of people after two years are near isolation.

Happy Come Home Day

Saturday August 1st we celebrated Elizabeth's second come home day. This day is much more of a day for me to celebrate than her actual birthday. I made a brownie cake at Grandma's and Elizabeth was able to party with some of the family.

Elizabeth the day we brought her home.

Celebrating

Elizabeth two years latter.

We still haven't hit the elusive 2o pound mark and have even increased her appetite stimulant. I am not sure why this bothers me so much, but it does. Maybe it is the fact that an average 9 month old weighs 20 lbs. Whatever it is I just can't get past it. It is just one stinking little pound!

Just because I was feeling good about her health and how far she has come; Elizabeth got sick and had to leave a big family get together on the 1st just a few hours after our little party. Aside from the disappointment of missing out on something- again- it was just another reminder of how fragile her health still is. I am absolutely dreading this winter. It will be her first year without synagis so RSV is a big scare; the swine flu also has me in a cold sweat as well as the thought of another 6 months of the year spent in isolation.

Pixies

We love Tinker Bell and all the other fairies - and even got to meet them at Disney World. We had no idea that we would soon find them at our house!
A few days ago we learned that a tricky little pixie named Cleanadessa had been visiting our home. Apparently she can hear when parents tell kids to clean up toys; she then comes at night to see if everything is picked up nicely. If it is, she will sprinkle some pixie dust around the area or may even leave a special prize that some of the tinker fairies made. If the toys aren't picked up she might shrink them to a teeny tiny fairy size or even take them away for a while! So far we have been lucky and have found some fairy dust and even a magical fairy jewel! Wow!!

We had a big surprise this morning. When Ava woke up today she noticed a small door on her wall. After careful inspection we determined that it was a fairy door. They must have constructed it while we were all sleeping; Ava said she didn't hear anything- they were very quiet. They use the door as a magic way to go between the fairy world and the human world! We are very excited but have to be extra careful about leaving toys and other stuff out. We don't want our new pixie friends to trip on anything or for them to take anything. Fairies can be tricky! Right now Ava is having fun playing with it using her Tinker Bell toys, we don't think the fairies will mind since they can only use it at night and we don't have any magic to get through the wall.

Disney Dreams

We just got home from a fun filled week at Disney. Here are a few pictures with more to come (over 700 were taken between all of us! Good thing we don't use film anymore!). A great time was had by all!

A special kiss from Snow White (we didn't see any other kids with kisses all 4 days we were there!)

Not so great of Matt, but look at the smile on Elizabeth! We couldn't believe how much she loved the tea cups!