Monday, September 30, 2013

18 month milestones & surgery. Again!

Day by day, there seem to be very few changes in Leo with regards to milestones (and btw, I decided recently I don't like that word - "milestones"!), but then months pass and Boom!  I reflect on where he started and I'm amazed. Just simply amazed by this boy.

Last week, Leo had his 18 month checkup at the pediatrician. His recent accomplishments include speed army-crawling, speed-cruising, super-transitioning while cruising, and just the other day he let go of the wall so he could pivot his body and grab my hands. The little stinker with "texture aversion" who won't eat table food at home has also been taking bites of table food at school. According to his teachers, he does a great job mimicking his peers. He has tried macaroni, mashed beans, banana, scrambled eggs, and just today blueberry muffin. And he has made it clear that he does not like pears whatsoever.

He's proven to us recently that he can do more than we realize, even though he's still lacking some confidence. We now know we have to raise the bar and Leo will grasp to exceed our expectations!

So back to the 18 month visit, can I be honest for a moment? All in all, his check-up went really well... until a few days later when I caught a glimpse of his report from the pediatrician to Early Head Start. More than half of his developmental milestones were listed as "below expected range for age".

This made me cry. 

Yes, I'm overjoyed by how well Leo is doing. On an "adjusted" chart, he is actually doing well for a child with an extra chromosome. The part that hit my stomach like a brick was the feeling that my baby boy was being judged. And yes, I love my pediatrician dearly. She thinks the world of Leo and is continually impressed by him. But to me, this piece of paper and what was written on it felt like the beginning of a trail of measurements that Leo couldn't live up to. Like a finish line set for the Hare, my little Turtle creeps along behind - albeit with the greatest of effort and the biggest of heart, ever trailing behind. So I'm not brought to tears often, but this did it.

On the same day of my pity party, came a return to the ENT doctor. If you've followed along previously, you may recall Leo had his tonsils removed (along with adenoid removal and ear tube placement) last December. He was 9 months old and afterward, developed a respiratory infection before being discharged from the hospital stay, became dehydrated, and developed pneumonia. All of these brought the most interesting Christmas gift of all - a Christmas Eve and Christmas Day stay in the hospital. This was really sad at first, but ended up making for a very memorable Christmas for our family, to say the least! (Read the post "where did December go?")

At the ENT visit last Friday, Leo returned to be evaluated for what we thought was re-growth of his tonsils that were removed, causing a restart of his moderate OSA (obstructive sleep apnea).  He's been having pauses in breathing at night, with gasps for air again. After peaking in Leo's throat, Dr. Mitchell decided to do a scope to get a more accurate look. What we actually found out was this - Leo's palatine tonsils (the ones that are visual and removed with a standard tonsillectomy) which were removed last December did NOT grow back, but his lingual tonsils (which are usually too small to be seen on exam) became super-sized!

Did you even know that we all have more than one set of tonsils?  

Neither did I!!   

According to the world of ENT, it's somewhat common for the lingual tonsils to peak in size at adolescence, especially in children with DS and obesity. It is rare for this to happen to an 18 month old. Rare. But it happened to Leo.

In light of his OSA symptoms coming back, surgery has been scheduled for November 20th to remove the lingual tonsils. Leo did have eye surgery scheduled for October 16, and that has also been moved to November 20th so he can have both procedures back to back with only one sedation.

While we were initially upset by this news, we aren't totally surprised. Sure, I'd rather not see him go through another tonsillectomy because the recovery is really, really difficult at this young of an age. But I would rather not see my baby boy struggle to breath at night, and continually wake up because of the struggle he is having.

So, there you have it. What's happening and the explanation behind it.

Thank you for always keeping our sweet guy in your prayers. He will need more, come November!

With love,

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