The Bits In Between

Our days  have gotten quiet, life is settling down, it's almost time for me to get back to reality and work. Clara is doing so well. We went to the ENT (Ear, Nose and Throat) clinic to check on her snorty breathing. Her cardiologist was concerned that there was a possibility of a nerve being nicked during surgery, a nerve  that would impact how she swallows and her voice box. The ENT doctor cleared her in every way. The nerve does not seem to have been nicked and her palate seemed to have no abnormalities, which is unusual for 22q kids. He believes she just has a floppy voice box and will grow out of it-Nana Wallace reminded us that there is a lot of floppiness in our family, no big deal :)

Waiting for
Cinderella to
start

Clara attended her first cultural event-we went to see her cousin Ellie perform in Cinderella. When she wasn't sleeping, she loved the lights and glitter and wonderful costumes and colors! I cried a bit when watching a sweet little girl with Downs Syndrome dancing with the girls, assisted by another dancer. I can't wait until Clara is old enough to participate in dance or any activities she wants-and I hope there are such wonderful partners for her if she needs it. It reminded me that she can do anything she wants, this girl is strong and she will rock it.

Clara's disorganized
tongue, she always
sticks it out her
left side.

Speaking of being strong, Clara's ENT and speech therapist believe her biggest obstacle to eating is her weak cranofacial muscles. She has been eating about 3 mL orally, which is a sip in adult terms. So when speech was here yesterday, we tried feeding her on her side with thickened formula. Then she can suck in the formula and let it sit in her cheek for a second before gathering the energy to swallow without choking on it. She has become disorganized about eating, no knowing where to place her tongue and how to process everything in order. So we are taking it slow and practicing this new method, and she actually ate almost 1/2 ounce yesterday! She is sleeping more, this is definitely sapping her energy a bit, but we won't give up unless she does. In the mean time, we are still going to set up an appointment with GI to explore moving to a g tube, just in case.

Comfort for Kids
care package

 We are so lucky to have found so many online support groups to share ideas and advice and strength. The 22q group we participate in has a mom with a cute little daughter around 11 years old. She had an idea to  start an organization to help 22q kids feel better when they have surgery. It's called Comfort for Kids, go like their Facebook page and donate today! This sweet girl and her family have done a great job, and they sent a darling care package to Clara this week (it was sent last time she had surgery, but due to hospital mix ups, arrived here yesterday.) She  is fascinated by the toy with the bells on it, especially when I put it on her foot.  We have a soft cozy blanket, a bunch of fun books and DVDs, and our favorite part-the artwork on the box. Thank you to Kirsten and Amy and your family, it was so sweet!

Comfort for Kids box

I know that when I return to work, life won't stop and I'll still get lots of time with my sweet pea. I intend to keep her locked in on weekends, snuggling with me and telling her stories. But my 'vacation' will be over soon and we intend to make the best of it. We're going to stuff in all things we can, some swimming, heart mom play dates, a trip to the mall, and maybe a visit to the canyons for some s'mores. It feels good to have some control over our lives again, to know she is doing well, and to get out and play with her.