Thursday, September 27, 2012

the month long viral extravaganza

I don't think this is the first time I've said this, but it really would be okay if it was the last... Leo has had quite a busy month!

On August 27th, a month ago, he began daycare.  Let me tell you that we adore the teachers at Early Headstart. We are so blessed to live in a community that provides this opportunity for our Leo!  This is no typical daycare, the usual child to teacher ratio has been 3 to 1. On some days, 4 to 1, and even on other days 1 to 1. It goes without saying that Leo is not only spoiled with love and attention by them, he is also given a lot of opportunity to work on his goals set by the therapists.

His OT, PT, and Speech Therapist have routinely seen him at "school" for the past month. He's up to one or two therapy visits per week, with the current big goal of sitting up. Even though he's come a long way with tummy time, he still has some work to go before sitting up on his own. This will be his biggest challenge so far, but I have no doubt he'll get there once he sets his mind to it.  He would MUCH rather stand, that's for sure... and if Leo could find some way to skip sitting up and go straight to pulling up, I believe our determined little guy would do it!

Working it with the Physical Therapist...

Working it during tummy time at home.

So back to the start of daycare... three days into it, Leo developed what seemed to be a cold. It started with cough and congestion and within a week he began audibly wheezing. After antibiotics for ear infections, breathing treatments around the clock, and finally a round of steroids, more than two weeks into this cold/infection and he was wheezing even more severely. The next part of his adventure brought a chest xray to check for pneumonia, azithromycin "just in case", an additional medication for his breathing treatments, and another (even longer) round of steroids to carry him through the next two weeks... until he was seen by a pulmonologist.

That's right, today Leo made a new friend which we have added to his list of specialists... Dr. Rosen, the pulmonologist.  We already love Dr. Rosen, even though we don't love the fact that he has diagnosed Leo with reactive airway disease.  What we love more about this doctor is the discussion he brought up with the goal of getting rid of this heart/apnea monitor!  Did I really just type that?  Seriously, I did. And with a smile!

Sweet, kind, wonderful Dr. R will be reviewing all of the previous pulmonologist summaries from Leo's monitoring events and setting a plan to get rid of this thing that's been attached to my poor baby while he sleeps for the past five months. If anything, the visit was worth hearing that!  We're also excited that Dr. R is the director of the sleep clinic located right there in the pediatric pulmonology clinic. He'll be able to re-evaluate Leo's obstructive apnea when the time comes to make a decision for surgery (removing tonsils and adenoids), and that decision is only a couple months away.

So what about the reactive airway disease?  Well, that means we may have a long fall and winter ahead of us - the absolute worst time for respiratory infections and the distress it could cause for Leo's breathing. He is starting a baby version of Advair as a preventative, and he'll be scheduled for Synagis injections for protection against RSV (which I'm so happy about, after knowing several of our little friends with DS who have been hospitalized for RSV!).  Synagis isn't a vaccine, instead it's an injection of antibodies given on a monthly basis during RSV season, which will help our little one fight off the infection if he's exposed.

On the horizon for our Leo... a follow-up visit with the GI doctor next week to talk about how his reflux is doing, his 6-month well checkup (which will actually be 7 months, since he was sick...), and his first FOOTBALL GAME... the "I-30 Classic" - Rockwall High School vs. Rockwall-Heath High School tomorrow night. 

I'll give you one guess, and one only, as to which of those we are the most excited about....!

Go Rockwall, Leo's rooting for you!



Coming soon... a wrap-up about Leo's DOC Band journey, and a look at his round head!

Wednesday, September 5, 2012

the blessing of a half birthday

Six months... really?  Leo is celebrating his half-birthday today, and I'm having a hard time believing six months has really passed!  But it has.  And what a great adventure it has been! Aside from the numerous dr's appointments, alarms, moments of worry, sleepless nights and general newborn and baby events, there have been smiles and laughter, hugs and happy tears... and they have been too numerous to count.

For example...

A close friend said it perfectly today, "I have been humbled...". 

I am humbled by the past 24 hours as I have seen donations avalanche toward Leo's Lions (his team for the Down Syndrome Guild of Dallas, 2012 Buddy Walk). I simply made a statement last night that the big walk is two months away, and I'm humbled by the generosity, love, and financial support that has continued to come our way. Our team is now over 80% (over $400) toward our fundraising goal! 

I'm humbled to hear a story that one of our donors gave every penny that they made last night from tips at work. Every penny! For my child and others like him!  I'm humbled that our friends would challenge each other, as well as the hearts of anyone who would read our facebook page... to not only give, but give more by topping their donation by $1. I'm humbled that for every "thank you" I typed on facebook, there were numerous individuals who "liked" the statuses. Whether someone could afford to give or not, so many became aware of our efforts and the kindness of others has touched their hearts enough to recognize that publicly.

In the past six months, there are many things I've learned about Down Syndrome and families who stand up to the challenge of raising a child with a disability that have really changed my view (in the best of ways) toward disabilities. Now I can say today was a defining moment that has changed my view on the world (at least my world), where those around me have hearts the size of Texas.  Where kindness and compassion have not been forgotten, those with Down Syndrome are loved and accepted, and good deeds are alive and well.

God has an amazing way of moving hearts and showing Himself to us.

It's Leo's half-birthday, and I could never have asked for a better gift!

Photo: Six Months!

With tears in my eyes, and a humble heart,

Joyce and Leo