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Running Laps
Dear everyone,
I apologize -- probably left you hanging at the concern we had toward
the end of my last update (blood in T's stool). Turns out his platelets
were fine, and that was a on-time occurance, fortuanetely, so the doctor
wasn't concerned. After I last wrote on Thanksgiving night, we drove back
to MKE and got the go-ahead to return home again for the remainder fo the
weekend. Let me tell you, being home was the most powerful medicine I have
ever seen prescribed. Our entire family reacted as if we'd received some
sort of energy transfusion". The boys had a blast jumping around the
bunk beds. Joe and I kept running from room to room "because we can"
(SPACE is such a precsious thing now after the RMH).
Coming back to the RMH was rough on us all. First, the 2 hours of cleaning
house and packing (and administering IV meds during the drive) left us tired
and edgy to begin with. Then, stuffing the four of us back into our room
(sardine-style) felt like we'd tasted candy and then ripped it away. So
we were pretty grumpy upon our return.
Travis' energy has been very high, to our delight since our home visit.
In fact, I sat, chin to floor, watching both boys RUN LAPS around the second
floor balcony circle at the RMH. No kidding, this was the first time Travis
actually RAN for probably 4 months. And he wasn't' half bad. His little
legs are stick thin after all the lying around, but he held his own in the
indoor race! Spencer, always a great runner, reveled in the physical competition
again.
Travis has otherwise still been eating very little and still not drinking
enough, so is still on IV fluids/nutrition supplement at night. He's had
diarrhea for the last 5-6 days (the doctor isn't sure why, as otherwise,
he's doing so well) belly aches and high blood pressure. But the good news
is that his stool sample showed no problems (Guess who the nurses and I
conspired toscrape the sample into the specimen jar? -- God love ya, Joe).
And his CMV (virus) has gone down to almost zero!!! Travis' counts seem
to be doing ok (WBC 3.6, Hgb 8.6, Platelets 49) The Hemoglobin has actually
gone down a few times (requiring last week's transfusion and possibly tomorrow,
depending on his counts) and Dr. Casper doesn't know what that's from, but
said he's "cautiously optimistic" because Travis seems to be feeling
so great. That phrase is the most positive enthusiasm we get out of this
doctor, as he's seen it all, and knows not to get too excited prematurely.
So, after tomorrow's clinic visit, we will hopefully be "sprung"
to spend the weekend at home again. Yippee!! Then back to clinic Monday,
and if all is well, possibly "home home" as many of you have asked
-- home for good. We're going to need a U-Haul just to cart off the ceiling
high piles of paperwork and books and toys and clothes! Anyway, things MUST
be getting back to "normal" -- I even worked 10 hours yesterday.
That's the scoop from here. Thanks again for being there for us.
We're happy -- and "cautiously optimistic." (-:
Melanie, Joe, Travis and Spencer |