Sometimes life doesn't go according to plan. Sometimes you find yourself on a road you never imagined you'd travel. Sometimes it can scare the pants off you. This is the story of how our little family came to be, continues to grow and how we (attempt to) manage the chaos.
Wednesday, June 1, 2011
Hey, we are in the Midwest.....
What happens when you have a super tall, yet super thin kiddo who needs one size for his height but a much, much smaller size for his weight? We live by adjustable waist pants, but in some cases (i.e., pajamas) it isn't always possible. Add to that the recent diaper loss - YES, my five year old is POTTY TRAINED - and we are left with pants that do not, under any circumstance, stay up!
Thanks, Daddy, for this quick and ingenious fix!
There has been a little bit of drama surrounding Marissa's central line over the past few weeks. It started with a simple clot that was seemingly easily cleared with a TPA indwell. Unfortunately, that lasted about a day. Once the weather started to warm up and she started to wear less clothing, Marissa decided central line pulling would make for a nice play activity. As a result, I did find it unclamped and pulled from it's dressing on multiple occasions. Certainly, this played a role in the resulting clots. We resolved the pulling issue by creating Hickman Fort Knox - which has her looking suspiciously like a very tasty, tender rump roast! Our last ditch effort last week was a third TPA indwell followed by a hydrochloric acid indwell. Sadly, it too, was unsuccessful. I'm dreading tomorrow because Marissa is scheduled for a pre-op exam and labs and currently her line is unable to be used for blood collection. No one, including the venous access team or any of the peds anesthesiologists have been able to get venous access on her in any of their past attempts which is why the line was kept. Oh, the pre-op? Well, seems Miss Marissa has grown tired of being all fancy schmancy "I have to have brain surgery every month" and is going to have a very routine, very normal-kid sort of surgery. She is scheduled to have a tonsillectomy along with her ERG procedure on June 13th. Her tonsils have remained huge since about January and her ENT said it's now reasonable to remove them especially since she is symptomatic. I hope it has a positive effect on the constant self-gagging she engages in.
I've not shared any photos of B & H because we're simply not allowed. I figure you don't really want to just see feet - it's so not fun to look at feet, but this picture pretty much sums up the wait. They love each other - they are siblings in the true sense of the word and they are so waiting to join their family!