Wednesday, November 11, 2009

And Away We Go...

I seems these days we are always in the throes of some medical disaster: Hernias, Tetrasomy18p, Failure to Thrive, Fragile Bones, Profound Deafness (from birth), abnormally shaped Kidneys, bilateral Club Foot, Crohns Disease, Fibromyalgia, Migraines, Seisure, Diastolic Heart Disease, deafness (both Clanpaw's cancer, Baba's cancer, my mother's mixed "whatever", my Crohns disease, oldest son's Tetrasomy 18p, and now: Neurofibromatosis I in my younger son.

You may be asking what radioisotope I swallowed as a youngster, but as my chromosomes are normal in count(46 xx), (Beanstalk's are 47 xy, though) it's more likely I have damaged egg cells which originate from my mother (very long genetic discussion), but nevertheless, there's obviously something wrong and we are right back in the thick of it. Now, we'll be looking at everyone's Chromosome 17 for a few genes that seem to be giving my youngest a bit of trouble.

Yet another (possibly) de novo genetic disorder has struck the Scat family. Unbelievable.

So far, though, all Texas Childrens' Hospital is getting is an earful and an eyeful of Squib! And boy, is he full of it! We've been to the dermatology clinic (all over the clinic)...he met the criteria for NF I and we now have a bevy of tests ahead of us. And, boy, did he have a bevy of tests for them! NF2 and Schwannomitosis would not be good things, either, but we've got to test for everything.

Squib made it very clear from the start: "We came to play!!!" And there you have the resilient attitude of my little guy. This little inset of SqB shows him smiling and playing in his crib two days after open heart surgery (at three month). So, if you're gonna talk about your bouncer-backers Squib needs to be at the top of your list! We started off in our little exam room sitting by each other. Sqb in his gown me in my street clothes. Then the inspection began. The light nauseum. He messed with the blood pressure cuff, but turned a little pale when I offered to take his blood pressure (bad memories I guess).

Then the shredding began...yes...paper everywhere...which led to an exploration of the trash can. That whole trash-can thing went over REAL well with SqB's dad (my ex). He's a little, ummm, particular when it comes to trash.

He did NOT like the gown. I explained that it was to protect his privacy and he gave me one long "to heck with that!" look and tore it off. So by the time the dermatologist came around (with her flashing duck) to count spots and look at freckles he was streaking about and having a gay old time.

Me? I was not so carefree, because I was drowned in phone numbers and extensions of doctors that I needed to make secondary appointments with etc, etc, etc. I felt buried and overwhelmed at first but now it's just like doing a job with my son at stake. Minor detail...ha ha ha. Only NOT so ha ha.

Then the day became beautiful. We decided to forego all the traffic for a little play time. We ate spaghetti and meatballs and pizza in the Clinical Care Center with Andy (my ex) and played on the sky bridge between the CCC and Texas Children's Hospital West Building. Hide and go seek in a large temporarily abandoned medical building can be fun!!! We toured the fish tanks and played all over the equipment on the varying waiting areas of the CCC. And, in general explored the place as much as we could.

And BOY, do we ever like exploring! That loosened me up a lot and there are a lot of artistic things (cows on parade--who da thunk it), trains, playgrounds fountains, and beautiful gardens to see. If you happen to be there for any amount of time, such things bring hope and believe me (having lived there off and on for a few years) there are people there who need lots and lots of hope.

 Squib and I both like fountains, so I'm thinking of a riding/hiking route to take us past a lot of the gardens and fountains in the Texas Medical Center area for our next prolonged trip with a ride on the Metro rail so that SqB could get his jollies for having ridden on a "real" train.

The wee one was so wiped out that he never made it to Minute Maid park from 288 and MacGregor before he was seriously crashed out in his car seat and snoring to boot!

Thus begins our weekly pilgrimage to the Texas Medical Center. Ugh....but at least there are cool things to look at!

Gaining Some Perspective


  1. You make me really like my life...and I've had 20% of my bones broken by doctors. Seems I got off easy.

  2. Everyone has their trials in life, I think. I have a really hard time watching my boys struggle, but they are the happiest most resilient kids in the world!! Neither one complains a lick or seems to wonder why their life isn't different...