May 21, Day +113, We're still here!

"Just the Facts"-- What a week, good labs except for one, another midnight trip to the ER for an off the charts level. Still very week, but having to keep exercising.

B seems to be averaging about 1.5 weeks between blood infusions, which has increased from 1 week.  We are not quite able to make the 2 week mark yet, but that may come soon.  In the meantime another hiccup has presented itself and this one is tricky to manage.  We are watching this level and the very first time I tested the reading was so high the range stated: "Call the Doctor"  The bummer was that it was 10 pm, so we had to wait 2 hours and test again, which didn't go in the direction we hoped it would, so off we went to the ER for another torturous night waiting, getting IV fluids and more testing.  We were finally released to go home at 6am the next day. ugh!  I don't know about you, but I need my beauty sleep.  B was able to cat nap for an hour or so in between testings as he was laying down.  I was on a fold out chair.  Oooops, sounds like I am complaining.  Anyhow, we have spent the last few days working on a rhythm to get this new phase under control as much as we can.  To top it off, B's diet has shifted once again, so what he was eating last week no longer works this week.  But, we do have good news and that is the protein shakes we are giving him seems to be working and putting the weight back on.  He checked in at 147 this week!

The latest on the hair report is that it is coming in, but still sparsely and a bit wild.  When it finally all comes in, it will be very interesting, still cannot tell the color or texture or if it will be as thick as he once had.  He still does have that mustache and is set on keeping it until head hair is in full bloom.  We had to extend his handicap placard as it doesn't look like he will be driving anytime soon.  Bet, you are all happy to hear this!  I would choose to stay off the roads if they allowed him to be driving right now.  For all the difficulties we are enduring, there are always sweet blessings that come our way.  You have to be looking up to catch them and cannot be so self absorbed or you will miss them, but they are very special and delivered at just the right time.  So thank you for all the blessings!
Until next time,
Hopeful Believer.