Three Little Engines: Daytime Potty Train and Portable IV

Tuesday, February 8, 2011

Daytime Potty Train and Portable IV

This is Aidan's in-home or portable IV.

And he still has it. And he's not happy about it.

The doctor felt he didn't look as good as he should being on a 24hr continuous IV, with at least two previous IVs.

To be specific, he's extra puffy, which should not happen. Originally when I was told they were going to hook him up to one of these, we planned on keeping him away from Jace and Damon in a separate room, to protect him from their curiosity. But fortunately they've only needed a few reminders to leave it alone.

But he's not vomiting anymore, so I'm happy.

I cannot express how excited for Jace and happy I am that he is officially daytime potty trained.

He's so proud of himself!

Truly a blessing in the middle of all this!

1 comment:

DQ said...: Awesome Job Sis! So glad you were able to find the strength and patince to make it happen. And Great Job Jacen! Keep it up. :); February 9, 2011 at 5:09 PM

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Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.