SOFT CONFERENCE 2011

The conference was wonderful. So many new families and families already met. Families who have lost much and families who have new! Many smiles and laughs and also tears shed! In this journey sometimes you can't help but wonder who will not be returning next year. You never want to sound down or negative but in this world you can't avoid it. A huge thank you to the Marohn family and the Cook family. It was an unbelievable conference for all.

I am so glad we had the opportunity to travel with Annabel to Chicago. Thank you to Mel, Tara, Carly and Colette for agreeing to our road trip. Mel and the girls did all the tourist type things. They saw the Astro's at Wrigley's field, ate deep dish pizza, saw blue man group, went to 2nd City to see comedians.

There were many things that were highlights of our conference like meeting Barb Farlow, Annie's mom who is doing so much for all of our children. Annie's life was cute way too short when doctors there in Canada decided her life wasn't worth saving. It is very sad but Barb has put so much of her time and energy into doing everything to change this.
Also, we were able to meet Annabel's Internet boyfriend Dawson. What a sweetie...his parents Josh and Renae are amazing and so much fun. I decided this conference needs to last a week at least so we can just spend time together with nothing going on but hanging out!
Also seeing Kelli and Akaiya...can I say this girl has grown so much. Kelli will be on the board next year for St. Louis.
Also, getting to know Krissy and Terre. We will be meeting up again. To new friends Maddison T18 and her little sister Emma, parents Micah and Angie. These are two busy parent with active little girls.
Getting to meet and hear Rick Santorum speak and hear his story of Isabella, 3 years old and Trisomy 18.

If you know that I took pictures and they aren't shown here I am having much trouble with one of the camera's I took photos with...I am hoping to work this out soon. I have many more to come.

Annabel returning from vacation to therapy!

The sightseeing bunch visiting us at the hotel...

Gabriella and Annabel visiting...

Annabel making sure her Team know what to do for the HOPE Stroll... 

This is new on Annabel's wish list...

Dawson, Annabel's internet boyfirend...He is even cuter in person!

Aniella, Dawson and Annabel getting tired from too many photos

Josh, Dawson's dad holding Annabel..

Annie's Mom T13, Barb Farlow (middle) with Annabel and Tara...

Annabel sleeping in the RV...

Chicago bound in the RV...

A huge reminder along the way...

No the RV isn't really moving, silly!

Carly, Mel and Colette

Tara and Mel

Just a few of the trisomy families participating in the Stroll for Hope

Girls attending the Astros game at Wrigley's Field

Annabel sleeping with her eye's opened...

Team Annabel, ready..set...GO!

Gabriel (Partial T18) and Annabel

Annabel learns to throw....

This is Annabel's new found talent. She loves to throw the ball, basically any ball and any size. This ball in the video is a weighted ball, but when you toss her just a regular plastic ball she can even catch and toss it back. The little video is over 2 minutes so you can just watch the first part since it is repetitive. This is Rebekah her nurse encouraging her! The video was taken over the 4th of July weekend but I am just learning how to post the videos again.

A great appointment....

Today, yes today was a wonderful appointment. I can say in the last year I haven't really felt very positive. Today we visited with our GI doctor. We were lucky enough to get an appointment with him a year ago in May. This is when Annabel began her life on TPN/central line. With that came a dependence on TPN, nursing, several blood infections, way too many visits to ER and admissions, 6 new lines and the list could go on and on....But today we were told that she is now on 60% g-tube nutrition. I haven't blogged about it very much because in the last year we would make a few advances all to discontinue the feeds and go back to where we started. It has been a couple months since we began EleCare. We have continued increasing her feeds beginning at 15mls. and now up to 135mls. (4 1/2oz.). Today we will begin 5 oz. She is down to only 8 hours of TPN and no lipids due to such a large weight gain. They are cutting back the calories in her TPN also today. They have also adjusted her caloric intake to 800-900 calories vs. 1100 calories. When I heard the words 60% nutrition coming from being tube feed I had to fight back tears. I never want to look weak in front of the doctors. We have been told Annabel would probably be on TPN the rest of her sweet life. HOPE is what we were given today. To go back to a life of not being so dependant on other things that negatively affect her health.
The negative is that Annabel still continue to struggle with UTI's. She is on two IV's for the next 10 days. For anyone who follows Annabel's story this is just a way of life for her. But today, nothing can get us down. WE are so thankful for the HOPE that Annabel was given today! Thanks to everyone who continues to follow her story and pray for her. I am sorry for the lack of post but somedays she is just tired (or maybe mommy is the tired one!)
I am hoping the pictures show how happy we are with the good news!!! Meemaw came by for a visit.