Tuesday, May 29, 2012

the past 2 Weeks (that seemed more like a month!)

Has it really been only two weeks since I last gave an update on what Leo has been up to?  Because I swear it seems like it's been at least a month!  Well anywho.... on to the update...

I left off at the scene where Leo took on the heart/apnea monitor.  He has done a great job sporting the device, although he's given mom a few scares with the alarm going off in the car. On May 15, he successfully had 2-month immunizations, followed by a fever for two days (typical). On May 16, we visited the pediatric gastroenterologist to have a little talk about the reflux issues and make some medication decisions. Can I just say how much I love Dr. Whitney?  I've met two other families since that visit whose children see her, and she's wonderful! There was a medication our pediatrician was considering (in addition to prevacid) for Leo's reflux issues, but a possible side effect is torticollis (where the neck muscles spasm and cause a twisting of the neck, with the head tilted to one side). Considering Leo's low muscle tone and what it would take to overcome a side effect like that, Dr. Whitney decided the risk outweighs the benefit. Instead, she made a plan to limit his feedings to 3 oz maximum. Two weeks later, I can say it's working great! He's still eating every 2.5 to 3 hours, but there have been a few times he's crammed all that eating into daytime and slept through the night... so at least he's being a trooper about it!

Our next stop, on May 18, was Leo's first visit at the Children's Medical Center Down Syndrome Clinic. It was a long day there, but we met some wonderful staff who will continue to be a part of his treatment for years to come and obtained some really useful information and resources to plan ahead for his needs. Totally worth our time! It both amazes and inspires me to see individuals who have gone into the medical field working with children or adults with DS because they have a child with DS. It's awesome for us parents, because it makes them an even better resource. Needless to say, there were a few of those parent/professionals that we met through our visit at the DS clinic.

Last but not least, Leo had visits last week from our wonderful ECI (early childhood intervention) specialists - Heather for developmental, and Kaylee for speech (feeding). We are excited to report that he's doing so well with feeding, we get to scale down to Kaylee visiting once per month for now. He's also doing so well with movement that we're increasing Heather's visits to twice per month. To top it off, we'll be adding the ECI Physical Therapist into the mix starting in June. Fun stuff, I tell you!

As for upcoming fun stuff?  Tomorrow, we visit the pediatric cardiologist.  The only "heart work-up" Leo has had was through my prenatal sonograms. Although there were no heart defects seen prenatally, and none "heard" on exam since he's been born, just to be thorough he'll have an echo cardiogram tomorrow. About half of children with DS are born with a heart defect, so being thorough is a good plan! 

One other big accomplishment this past month?  Need I explain....

Isn't that the sweetest thing? 

Another "upcoming" fun, non-medical thing... Leo will be a participant in a little project for "Joel & Friends" this Friday. I'll put more info about it in the blog this weekend, but for now... go check this out and consider supporting the project:  the Joel Project (Joel & Friends)
Also, go to facebook and like this page:  Joel & Friends (on facebook)

In addition to all of Leo's recent activities, he has experienced his big sister completing middle school (she's so ready for high school!), and watched his big brother doing an awesome job Potty Training.  What a two weeks it has been for our little guy!

Rolling right along....

Love, Joyce

1 comment:

  1. I'm so glad you've got great Dr's taking care of him it really does make all the difference. It sounds like he is just coming along in huge leaps and bounds. I love the smile picture, what a beautiful moment and he is so precious you can post as many of those as you want.

    I can't believe Meris is already going to high school it seems like 5 minutes ago she was leaving CLP it's amazing to think it's been 2 years since then already.