Haley’s Giggle

Now that all of the celebrating is done here in DC, it’s time to roll up the sleeves and dig in. For those taking care of Haley, it means that we all have to keep trying new foods, figuring out new ways to try to make her walk, and ultimately grow.  Because she is signed up for school next year, and darn it all if she doesn’t make it.

Of course, being sick with a stimach bug doesn’t help things.  Tonight is an experiment.  Since she’s lost so much fluid in the past few days, and wont’ eat (not even soup), I have put “Tiger” gatorade into her feeding pump. I figure it’s the best thing to rehydrate and replenish those key electrolytes lost during stomach things, but since she won’t actually imbibe it, this is the next best thing.  So far, the pump has only gone off once.

Hokey Pokey (or “Hopkey Popckey” as Haley calls it) is going well, though Hales has problems with the turning part. and standing on her own to put her legs in and out. But we’re getting there. 

On another front, since Haley doesn’t have enough doctors who are looking after her, there is a hunt for a pediatric orthopedist. Lucie the PT thinks it’s important at this stage.  No need to freak out until it’s necessary.

In the meantime, Haley’s spirits are kept up (whether she likes it or not) by Anna, always willing to give a kiss/hug/play princess.

She’s due for another big round of doctor’s appointments and exams, including her CT scan (to see whether or not there is anything neurological affecting her walking). I wish there was a way Haley could cram for any of those tests.

I’ve constantly wondered how this kid, who has gone through so much, is able to keep such a jolly disposition. Then my mother was telling me she was going to visit her Uncle Joe soon. This man was stricken with Polio when he was a child, and though he didn’t die, developed a severe limp that lasted throughout his life. And yet he has, for nearly 100 years, been able to easily laugh off all that the world has ever thrown at him.  So, I’ve stopped wondering how Haley does it. Now I just marvel at it.

Wishing you all a happy new year. too tired to even write full sentences. Haley is great, in great part because of Anna. Grammy, Gramps are Uncle Pretty are often on hand for a round of Hokey Pokey or  “Live your Life” by TI and Rihanna. 

New pictures are up, and more will come. Haley’s body rash now comes and goes. She still tugs at her new spigot-like feeding tube, but she’s slowly growing to ignore it. Eating and walking are plateaued, though she certainly has the attitude of a healthy child. we’re going to start vaccinations, but it will be a long and drawn out process.

Going to apply for pre school for Haley next year, in the great hope that she catches up and is able to join her age group. 

In the meantime, will keep trucking up the road. Hoping to teach Haley the value of energy conservation: that it’s possible to go through something over and over again without having it exhaust you every time.