Quap

When I was tending Zach and Halle, Zach and I were working on reading.  He can sound out lots of words and qualifies as a reader.  He has a learning tool with pockets which contain cards having a picture on one side and the word spelled out on the other side.  Some of the cards just have a letter.  I held up the Q and said, "What begins with Q?"  He said, "Queen.".  I said, "Yes, and what else?"  He thought  for a moment and then said, "Quap."  I said, "Well, quap would begin with Q but quap is not a word".  He said adamantly, "YES it is.  Quap is a word."   

I've had to reconsider.  It's been a rather quappy season for us.  I guess  he's right!

Halle was so funny.  One morning we went in the back yard to read books and bask in the sun.  The sprinklers had been on and Grandma's old picnic table had a skiff of water on it.   Halle would take her hands and flip water everywhere.  Then she would bend over and suck the water off the table.  It was adorable.

Halle and I had a lot of time together as Zach goes to preschool in the morning.  We would go out and ride scooters while we waited for Zach's ride.  One morning we went searching for bugs.  It is amazing how few bugs are visible at 8:45 a.m.    We finally found a potato bug.  Zach was delighted that it curled into a ball. Halle came to look and smashed it with her pointer finger.  So much for that bug.

We would often hop in the wagon, but one morning she really wanted to go on a stroller ride.  I got it down, but couldn't for the life of me figure out how to open it up.  There were a half dozen controls, most of which appeared to do nothing at all.  :-)  Halle got so mad.  The stroller was off the wall.  I clearly knew what she wanted, yet I "wouldn't" open it up.  That took a phone call to Trisha to explain how to open it up.  Luckily the remote instructions got us happily on our way around the block.  After the stroller ride we continued our bug search and ended up doing a little weeding.  At first  Halle was content to help pull weeds.  Then she started adding dirt to the bucket.  Finally, she was putting the dirt down her neck.  She was one dirty kid!  I'm guessing those cute shorts never did come clean.  She is such a happy baby.

 

NIH

Well, today is the first day of the NIH trip.  Kim is already there.  Trisha and Steve are on their way.  I'm the babysitter.  Kim texted on her way to NIH, " On the shuttle.  All is well  This is so surreal to have some answers after years of prayers.  It is weird to be here.  Brings ups a lot of tear-filled memories in the hospital." 

She called this morning as Zach was getting ready for pre-school. She said, "I had to call.  You should be here with me.  All those years, it was you and I in the hospital, getting transfusions, having blood tests, talking with doctors.  You of all people should be here to get the answers with me.  I don't know why I'm so emotional.  I hadn't suspected this.  It brings back so many memories and the frustration of dealing with a disease without a name."  She went on to explain.  There are some interesting things I've learned.  Low cholesterol is part of ALPS.  I've been told I have the lowest cholesterol my home  doctor has seen - but neither of us knew it was connected to anything else.   At NIH, they took 21 vials of blood!!!  I asked if that couldn't put me into some kind of shock, but they said I would be fine as my blood was good.  They will freeze some for possible future tests.  They asked me what I took to bring me out of  the ALPS episodes.  I told them they just gave me a transfusion.  They said, "That wouldn't have brought you out.  That helped the symptoms, but wouldn't have ended the episodes.  Normally they start and don't have a way to stop.  To stop the episodes, you normally need something like steriods"  I told them that I also had asthma, so many times I was on prednisone for my asthma.  Who knew there was a blessing in having both ailments?  Interesting, huh? 

She said, I also learned I'm not out of the woods.  I had thought, "I'm over it.  I'm good now."  They said, "Well, no.  That isn't true.  If you get a bad viral infection, you could end up as bad as Drew.  In the spectrum, Drew is on the severe side. You are in the middle.  And then your sister and Dad don't have anything noticeable.  We're so glad we get to see the whole family."

Well, Halle is getting tired of helping me type, so I guess we'll go do something fun.

What makes a person do it?

Greg competed in his first marathon yesterday - the Top of Utah. We watched for a couple of hours. It was pretty amazing. I assumed if you ran 26 miles, the pounds would just drop off, but there were plenty of overweight people to disprove my assumptions.   Of course, there were some that looked like runners and were still smiling and talking at the finish line.  Twenty six miles!  I still can't believe it.  Congrats Greg!