Tuesday, May 25, 2010

We've Been Busy

Last week was Chloe's appointment with her feeding OT. Tammy was so impressed with Ms. Chloe's oromotor development. She said judging her on her oromotor skills she would never guess that she is tube fed even as much as she is (which is about 40% of her daily intake now - gooooo Chloe!!!!). I was just thrilled to hear all this good news about how Chloe is doing! I can get so frustrated with how far we have to go still that I can sometimes lose sight of how far she has come!

We also had Chloe's IFSP (Individualized Family Service Plan). That's the service planning meeting to determine what services Chloe "needs". This was a big one even though it wasn't her annual because we are moving to a new town this summer and will be getting all new therapists, so we wanted to make sure her current therapists had a chance to make goals for her and that we had a transition plan in place. They used a new assessment tool that focused on her daily routines and how well she meets my expectations for each routine and then how satisfied I am with each routine. I found the tool to be quite useful in directing our goal setting and figuring out what are some things I would like to see change. It clearly gave me a strong voice in determining her goals.

Lately, I've really been having a hard time with Chloe's inability to walk, as the weather is nice and I'm really having trouble with her crawling outside, and it was so nice to have a table full of sympathy at her IFSP. I get tired of hearing "oh, she'll walk". I KNOW she WILL walk, it's just hard that she's not walking now. That may sound harsh, but that's my reality. I know that in many ways those of us who are blessed with a child with Down syndrome get to enjoy having our "babies" longer, but that has it's challenges as well. For me, it's been a long time to have a crawler. Don't get me wrong, please! I LOVE Chloe for who she is and all that she can do. This is just my struggle right now and simply having a group of professionals hear me out and sympathize with me was empowering and validating. So onward and upward - I can stop dwelling on it and turn my focus to helping her reach her goals, as SHE is ready!

Another big piece of our meeting focused on feeding. Since Chloe had the stomach bug again she stopped taking a bottle all together for a few days. I was very discouraged and worried we had hit a wall. But just as I was losing hope, she picked up the pace again and is actually drinking more then she was before! GO CHLOE!!! She takes 18-24 ounces by mouth per day now. I think I need to say it again. . . GO CHLOE!

Last but not least we had her ENT (Ear, Nose and Throat) appointment on monday. A hearing test showed that she had fluid in her ears and although her hearing is "fine" docs don't like to let children with developmental and particularly speech delays suffer from ANY hearing loss whatsoever as that will have an adverse effect on further speech development. So they take this very seriously. Fortunately, few ear infections and little to no hearing loss means we can "wait and see". So no tubes for now!!! Wooooo-hooooo! She'll go again in September for a hearing test followed by an immediate ENT appointment for the most consistent care. Have I mentioned we have the best ENT EVER!!!! :) Dr. Baum ROCKS!

So we've been busy, but a good busy. Chloe's the hardest worker that I know. I've got a video to post soon. Until then. . .smiles :)

Saturday, May 15, 2010

Spring Pics!

Chloe Peacock
Beardsley Zoo - Bridgeport, CT

Xander and Sadie outside the prairie dog exhibit.

A beautiful peacock.

Chloe enjoying a snack! :)

Chloe looking at a beluga whale atMystic Aquarium.
She was waving frantically at it in the first picture!

Me and Chloe

Me, Chloe and Miles at our new house (oh yeah, I don't think I've posted about that yet! I'll post about that later!!!!)

Chloe at the new house in the backyard.

Happy girl.

Big brother Xander with some "flowers" for Chloe.

The 3 kids in the backyard of the new house.

Hugs for Xander.

Where's Chloe??? Her favorite game!

Enjoying a beautiful day with her big brother!

Xander and Sadie at Xander's first science fair! :)

Thursday, May 13, 2010

Proud Mama!!!

Okay, I need to brag about my big kids for a minute. Sorry no pics yet, I'm having troubles with my camera, but I DID take pictures tonight and can hopefully get some uploaded soon.

Anyway, Sadie was terrified tonight at her dance rehearsal and after being sick for 2 days and then getting thrown into a room with about 30 girls all running around it was just too much for my little 4-year-old. So I ended up sitting in with her while she watched the other girls practice their routine. Her teacher came up and invited her to join them for the last chance (no pressure, which I really appreciated), but she again declined and told me she was too scared. So I encouraged her (AKA bribed her with a toy) and she agreed to give it a try. I was sooooo proud of her in front of all those big girls, out there dancing with a smile on her face and her shoulders held high. YOU GO GIRLFRIEND!

Next up was Xander-man at the school's first science fair. He was the only 3rd grader to present and just shined standing there demonstrating her experiment to all his peers and their parents, as well as teachers and the principal. It was so awesome to watch him in action. He even volunteered to present at the end of the fair to the PTA meeting attendees. He exuded confidence and pride as he explained his process to onlookers. I was soooo proud I could barely contain myself.

okay, time to sign off. Chloe just had another vomiting spell. argh. . .

Sick House

Boy, that's almost putting it mildly. To make a long story short, it started Friday and ended. . . well. . . I hope tomorrow, with 3 kids and 3 adults all with the stomach bug. The 3 kids were all sick at the same time! YIKES. MOST of us are feeling better, so now it's just a matter of getting back to full strength. It'll come.

And through it all I couldn't get Sweet Ella Grace out of my mind. Wondering what it was like for her to be sick and how she was feeling. Was she feeling sick yet? What was her mom feeling? I couldn't help but think of them as I held sweet Sadie's hair back as she threw up for the ump-teenth time and cried "I just can't take it anymore". All the while as I comforted her, knowing that she'd be better in a day or two, I couldn't get Ella out of my mind. I want to wisk out there and make it all better. I want them to NOT be dealing with this. But I digress and these negative thoughts aren't helping anyone. It's time to turn on the positive mojo.

A few years back I started a tradition in my family where every night at dinner time we would think of different people who were having struggles in their lives, say their names and maybe even write their names on a candle, then we'd go around the table and tell jokes and laugh until we couldn't laugh anymore. That way while we were thinking of people our positive happy thoughts could span the universe and hopefully reach them. My kids still sit down at the table and say "Let's think of people and do jokes". I think it's time to sit back down at the table together, think of some special people who need some positive energy (like Sweet Ella, wonderful little Jax, and beautiful brave Zoey), and let our laughter heal.

Saturday, May 8, 2010

A Birthday Wish: Thoughts and Prayers for Sweet Ella Grace

I was so sad to see today that our Ds blog world has been rocked by another bit of devastating news. Sweet Ella Grace has transitioned to leukemia. So for my birthday (today) I'm asking for thoughts and prayers for Chloe's California "twin". You can visit her blog for more information and some adorable pictures of the beautiful Ella Grace. We love you Ella Grace, Denise and the rest of the family!