Things

Rachel and I spent the day down in Birmingham, AL last Thursday. I had originally made the appointment six months ago so we could go to the Down syndrome clinic at the University of Alabama at Birmingham. Then, starting over a month ago, Rachel started to have some really disturbing stool issues. At first, we thought she had caught something viral. Then, it continued for over two weeks and I took her to the pediatrician. He took a swab and sent it off and found nothing. I called the doctor and said "This is not normal. We need to do something else" and he had a bag full of vials for us to pick up, fill up and take to the lab. Those results came back without any answers besides it's not viral and it's not bacterial.

At that point, it was time to see a GI doctor. I chose to take her to the GI doctor down in Birmingham that my son had been to when he was diagnosed with MSPI. I made the appointment the same day as the clinic appointment. I was really hoping while we were waiting those two weeks that the issue would magically clear up. But it hadn't. After taking a very detailed history of Rachel, the GI doctor decided to take some more stool samples to test for some different things, to take some blood work and an x-ray of her belly. Right now we are waiting for those results. Depending on what those results say (or don't say), we'll know more on how we are to proceed.

This has been very difficult thing for me to handle. Something is wrong but right now I can't do anything about it. Stephen has suggested cutting out foods in her diet to see if that is the issue but we can't. If we do that, any of the tests that may need to be done and the outcomes that we may receive would be compromised. I want her to be diagnosed correctly. I don't want to guess and be wrong and have to start all over again. So we wait. We should have results at the end of the week. Until then, I'll keep stocking up on stain remover and Destin and praying this is something simple to overcome.

Birthday Party!

Another beautiful birthday party day!

cake i made for rachel

signing "off" - she didn't like the ribbon :(

saying "thank you"

 It's nearly impossible for me to get pictures of Rachel smiling. It's like she sees the camera and refuses to do it. There are so many times during the day where she smiles at me and is cute as heck and I wish I could capture it. So, while it seems like she wasn't all that happy at her party, she was. She just won't let me photograph her!

She's Three

Our little girl is three. Being three brings about a lot of big changes. Rachel will no longer be seen by therapists in our home. She is now officially a preschooler and had her first day yesterday. I didn't receive any calls throughout the day asking me to come pick her up early so that was a good sign. However, she was completely exhausted when I got her and a mess when I got her home. It took her 20 minutes of screaming before she calmed down enough to take a nap. Once she had her nap she was back to her old self. Apparently preschool is tough work.

Rachel starting school is tough for me too but not because I don't think she'll do well in school or because I will miss her. This is the first time she will be out of my sight and protection. I can't shield her anymore. She is a tough cookie but that first time she understands that she is being left out because she is "different" will kill me. I can already feel my heart shatter in my body. When I was a grade schooler (and even a high schooler), I never felt like I belonged. There were cliques of girls who did everything together and I was not included. I wanted nothing more than to be skinny, blonde and pretty. I would write in my diary about how I needed to lose weight and draw "before" and "after" pictures of me.

Rachel will probably go through the same emotions like I and many other girls had about themselves. Unfortunately, she will also have the added obstacle of Down syndrome. Her face is like a giant target saying "I'm different. Pick on me. Leave me out of your group." How will I assure her that she is beautiful and smart when most of the outside world thinks and tells her, maybe not with words but actions, that she is not beautiful and not smart enough to belong?

I know she is only three and that maybe I should just be thankful that she doesn't understand it now. But she has started school and to me that means that hurtful part of her life has started too.

Family Weekend

We went to one of our favorite places this weekend - The Huntsville Botanical Garden. They are having their Scarecrow Trail this month and next month and I wanted to go see it. It was a beautiful day but we honestly didn't get to enjoy the scarecrows that much. It's hard to do that when you are constantly chasing after a little girl who doesn't understand the meaning of "stay with us." We managed to have a good time anyway though and the kids even got an impromptu dip in one of the little swimming holes that are still running. We also stopped in at the butterfly house. It is gorgeous in there right now and must be the season for butterflies or something because you couldn't walk two feet without running into one.

um, dada, this elmo scares us...

no, i wasn't going to eat this rock. why would you even suggest that?

Book Worm

Rachel girl has found some "new" favorites. Rock on , Dr. Seuss!

The Big Trip

We took the kiddos up to PA to visit family. Rachel hadn't been up in quite a while and Charlie had never been at all. I thought it was time for the rest of the families to meet him so we planned this trip. The trip itself was good even if the actual travel by plane was the worst experience ever. I know the kids had fun but Charlie was NOT thrilled with sleeping in a new place after the first two nights. We managed to hit the beach- they both loved it -swim in the pool, celebrate birthdays and visit with family all in a week. We did leave with a parting gift of a cold. However it's been pretty mild and it's not keeping them from sleeping. You know that is the most important part, right? Now let the pictures roll...

This plane thing isn't so bad....

Wait, you say we're flying Delta??!!

Off to the beach...

Eating sandy blueberries and PB&J

water cold? lay on the hot sand!

peek-a-boo with great grandma w

great grandpa w showing charlie how to whistle

alright elmo, you better do your stuff!

charlie and evan

rachel and grandpa c

rise and shine at 4 am to get on a plane back to AL

how we spent most of our time waiting for the plane...always waiting for the plane