Daegan’s Intervention.

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In case the title didn’t tip you off, things have been nothing but chaos around here lately.

I now have two children seeing healthcare specialists, one child attending two preschools (one morning and one afternoon) and I’m still pregnant with number four.

Which means you can throw in bi-weekly OB visits (with increasing blood pressure measurements and a impending three hour glucose test) on top of everything else.

Busy doesn’t even begin to cover it.

Unfortunately, just as we are starting to get somewhere with the endocrinologist and Bronx’s latest test results, another medical issue is now beginning with Daegan.

He’s been seeing a pediatric gastroenterologist for the past month, since his nine month checkup revealed that he had been losing weight.

Surprise, surprise. The doctor couldn’t find any G.I. issues that would explain the weight loss.

So, no definite answers for why he is so small.

On top of that, Daegan has missed several important milestones. At ten and a half months, he still cannot sit by himself, cannot push himself onto his arms when on his tummy, and his head control is not as strong as it should be.

Because he is falling behind, his regular pediatrician referred us to an early intervention therapy team who came to our house to evaluate him.

The reports they sent back to us were more than just a little concerning.

Daegan is developmentally delayed. In all areas.

I wasn’t expecting him to be so far behind. It was a bit of a shock to hear that he was almost 50% delayed in motor development and between 15-30% delayed in all other development.

Based on the results, he will be starting physical therapy and developmental therapy in the next few weeks.

That’s not the most alarming part of all of this though.

The therapists and the gastroenterologist have all mentioned that Daegan has overall muscle weakness.

And remember how he was born with ptosis? That condition is caused by muscle weakness as well.

Based on the muscle issues, our pediatrician is now referring Daegan to a pediatric neurologist to determine if the muscle weakness is being caused by a dystrophy or some other muscle disease.

But that doctor is booked until after the holidays, so we have a little bit of a wait until we can even start investigating this new issue.

Between now and then we have another visit to the ophthalmologist (not sure how that is going to go now that we know his muscle weakness extends far beyond just his left eyelid) and we have two different forms of therapy starting.

At least we’ll be staying busy during the wait.

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