Unexpected Twists (and a bonus! Fun Ways to Decorate your Head)

[caption id="attachment_1022" align="alignleft" width="300" caption="One of the first hat & sleeping moments.."][/caption]

On Thursday morning I was reminiscing about how last May, after Ellie's surgery, her body was having trouble regulating  temperature.  She would spike up to 107 degrees one night and then jump down to 94.   At one point, the PICU nurse after checking 3 thermometers to make sure she was getting an accurate reading, put an extremely loud electrical medical warming blanket on Ellie to try to elevate her temperature.  After an hour of warming, she checked her temperature, and it had not risen.  I suggested that I snuggle in bed with Ellie and try using my body heat.  I crawled into bed, avoiding all the tubes and lines running all over the bed into Ellie and laid down beside my sweet girl.   So greatful was I to snuggle up against Ellie to do

[caption id="attachment_357" align="alignright" width="300" caption="Ellie hats began at an early age.."][/caption]

something, anything that might be useful to her.  Fortunately, after an hour, Ellie's temperature did raise from the "body heat" method.  I was thinking about how this might be blog material, discussing how sometimes the simple way, the easy way is actually the most effective. 

With thoughts of the possible blog in the back of my mind, Ben &

[caption id="attachment_1011" align="alignleft" width="300" caption="Another Ellie hat moment. More like "Get this hat offa me!""][/caption]

I went to Ellie's music concert.  Ben was super excited about the concert and had been asking all day when we could go to the concert.  We had been listening to the music on CD and tape in an attempt to memorize the songs.  Ben had all the songs memorized, Ellie on the other hand, kept insisting that she did NOT want to sing on stage.  Growing tired of the conversation, I suggested that perhaps she should lip sinc.  Her teacher, Ms. Zwart, insisted Ellie sing with the class as she noticed that Ellie

[caption id="attachment_1019" align="alignright" width="300" caption="The 3 c's of successful hatwearing--cozy, cute, comfortable."][/caption]

has an excellent singing voice and loves music, continually

singing songs of her own making.  I envisioned Ben singing from the audience while Ellie did NOT sing from the stage.  Or maybe the audience would think that Ellie was somehow throwing her voice without moving her lips while Ben actually sang the songs.

When we arrived at school near concert time, unfortunately, Ellie saw us and thought it was time to go home.  She became highly upset  when she realized instead it was concert time.  Not a good start to the whole extravaganza.  Ms. Zwart came in like a

[caption id="attachment_1024" align="alignleft" width="300" caption="Another strawberry hat photo, because those cheeks are so cute."][/caption]

superhero and saved the day, taking Ellie by the hand and escorting her upstairs.  Ms. Zwart has a super power of being able to calm Ellie down in a moment's notice.   I keep expecting to spot her superhero cape underneath her teacher disguise. 

When the concert began, Ellie stood on the front row of the risers next to some of her classmates.  The program began with a

student reciting a poem.  The entire time he was reciting, Ellie

[caption id="attachment_1020" align="alignright" width="300" caption="She will wear the hairbow, but she will NOT enjoy it."][/caption]

was protesting loudly that she wanted to go home.  Then when the music started, Ellie began singing and dancing for everyone's entertainment.  I felt myself tearing up thinking how incredibly far she has come.  I wished terribly that the lights were off so I could have an "ugly cry", but alas the lights were on and bright, allowing everyone to see my emotional breakdown.   I had to pretend as if I had an allergic reaction to something and just discretely wipe my eyes.  Every time a song came on, Ellie would swing her arms, move her legs back and forth and occasionally clap her belly drum and her head.  When the rest of the class did clap, Ellie swung her arms back and forth to clap them in a much more theatrical way.  Several times, Ellie had a wedgie,

[caption id="attachment_1021" align="alignleft" width="300" caption="A happier hairbow moment."][/caption]

which she had no problem taking care of, regardless of the audience in front of her.  Between the songs, Ellie would become

upset, particularly with the clapping of the audience, she would hold her ears, protesting that it was too loud.  I sort of went back and forth, wanting to yell and cheer and clap for the 3rd and 4th graders and wanting to request that the audience use sign language clap, which would be silent, for Ellie's benefit.  Ms. Zwart stood off to the side and during the nonmusical parts of the concert, she would stand with Ellie until it was time to sing again.  

[caption id="attachment_1027" align="alignright" width="300" caption="Ellie all decked out for Easter Sunday."][/caption]

I always try to dress Ellie in a long shirt or dress because her pants tend to slowly ride down her body.  I recall a boy in my grade school whose pants were forever falling down, revealing the top part of his derriere, currently referred to as the "coinslot".   At one point in the concert, Ellie got an itch on her back.  As she tried to scratch

it, she began to lift up her dress and I said aloud, "Oh no!" because I knew the entire audience was going to be getting an eyefull.  Fortunately, it did not last long and I am going to assume that all the parents in the audience were so attentive to their own child that they did not notice Ellie's coinslot.  The boy

[caption id="attachment_1023" align="alignleft" width="300" caption="The same Pooh hat a month later..."][/caption]

standing next to Ellie continually encouraged her throughout the concert, telling her how many more songs they were going to sing.  When a child from another class stood up to sing a solo, Ellie kept singing, unabated as her classmates looked at her astonished that she would sing during someone else's solo.  Ellie, being Ellie, of course did not notice the looks of horror aimed in her direction, but just kept right on singing along.  The exact opposite of what I had envisioned beforehand--Ellie not singing at all. 

I think the thing that was most astounding to me was thinking that a year ago, Ellie lay in a hospital bed unable to regulate her

[caption id="attachment_1026" align="alignright" width="300" caption="The one and only time Ellie wore pigtails."][/caption]

body temperature.  After the concert, Ms. Zwart and I conferred on how we had both felt emotional seeing Ellie up there performing.  And I knew for sure that Ms. Zwart was in fact a superhero disguised as a teacher.  How else could you explain someone so invested in your child's life?  She really understood how momentous this was.  Today she stood on a stage in front of her entire school and flashed them (unintentionally of course).  If you would have told me a year ago this is where we would be, I never would have believed it.  Amazing!