Monday, November 19, 2012

Home again!

 This was the face I was seeing at the hospital.  Stoic, miserable, withdrawn.  Refusing to make eye contact.  Groaning and turning away when I attempted to tickle or play peek-a-boo.  Micah was just breaking my heart!  So much regression.  So hard to see, and not be able to fix.  I was starting to wonder when I was going to see this boy's beautiful smile again, let me tell you!  Finally, we got the doctor's okay to get him up and out of bed, and let him try out his new wheelchair.  Still not happy, clearly.    
And once we were discharged, he whimpered and grimaced his way through the three-hour drive home.  Oh, my sweet boy.  

And then . . . then we turned into our driveway.  And my Micah started to grin and giggle and bang his Lego on the window in glee!!!  It may have been dreary and drizzly outside, but Micah was pure sunshine as we walked into the house!  He was just smiling, and smiling, and looking around at everything.  So, so happy to be back home again!  To be hugged and kissed by Daddy and brothers and sisters didn't hurt, either!  Familiar faces!  Familiar place!  Oh, the relief!  
Can you imagine what must have been going through his mind while he was stuck in that hospital bed, in pain, unable to move, day after day?  Mommy kept saying it was okay, but it clearly was not okay at all.  

But oh, his joy, to realize that he was back home!  
Home is a beautiful word, isn't it?

Friday, November 16, 2012

Gideon's Casts

Gideon is now sporting some cool 
green and blue casts to match Micah's:
Gideon was due for another round of botox injections in his calves, to loosen up those tight muscles again, and this time we decided to cast his feet following the injections.  Sometimes casting for a few weeks can greatly prolong the effectiveness of the botox, and it provides a much more effective and constant stretch.  So we are trying it.  The botox was great last time around, but the effects were much too short-lived.  Gideon is dealing with it like a champ, and after a few minutes of confusion, he decided that he is okay with his clumsy new "boots."  He can sort of walk in the casts, but he has very little balance, and he weaves around and trips over himself and falls almost constantly.  So for the next few weeks he will get to borrow this snappy little walker from Shriners:
and for longer distances, he can take a ride in the chair:  
And my cheerful little Gideon is just taking it all in stride.  He is living in a hospital, he suddenly has his feet encased in clumsy fiberglass boots, and his brother is moaning in pain, but he is just going along with it.  As long as he has his mommy by his side, he is fine.  (If I decide to leave the room for a few minutes, that is a whole other story, though . . . then the boy quickly starts to fall apart.)  My mom is here at the hospital, helping me out, trading kid-shifts with me, cooking in the tiny family-area kitchen for us, and generally running herself ragged trying to keep up with all of this.  I am so very grateful for her willingness to be here with us for all of this, and also for Derek's parents who are helping out with the other kids back home.  

We had a beautiful sunrise to start out the day today:  
which blossomed into a lovely sunny day with 
an amazing view of Portland:  
but Micah is miserable, and just wants to go home and feel like himself again.  He always keeps an eye on the door (he is staring at the door in this picture) 
because he has figured out that whenever the door opens, it is most likely going to be somebody in scrubs coming through, and that person will (despite their smile and kind words) most likely be intent on poking him, moving him, making him eat something he doesn't want to eat, or otherwise tormenting him in some way.  He has become very nervous about the door, and every time it opens he whimpers.  He is breaking the nurses' and doctors' hearts here.  They keep trying to explain to him that they only want to help him, and he is just not seeing it that way. Please pray for Micah.  He is having a really hard time with all of this.  

Wednesday, November 14, 2012

Micah's Surgery

Today was Micah's big surgery.  First of all, lest you worry, the surgery went great and he is now recovering.  He should be discharged in a few days, and until then Shriners is taking excellent care of us.  We love Shriners!

Both of Micah's hips were out of their sockets, his femurs were tilting the wrong direction, and his pelvis was not formed properly, so he underwent a seven-hour procedure today that involved bone saws and screws and metal plates to, well, basically take him apart and put him back together again.  

As you can see from the picture below, he will be sporting a very uncomfortable-looking spica cast for awhile now.  To say that he was unhappy when he woke up would be a big, BIG understatement!  He has an epidural, and doesn't seem to be feeling much pain, but boy was he furious!  This boy loves to get down on the floor, scoot around on his bottom, and get into things!  He cannot figure out why this is happening to him, and he is very sad and grumpy this evening as he struggles to accept that no matter how much he  stares at mommy and pleads with his eyes and his quivering lower lip, she will not take the cast, or the IV, or the catheter, or any of the other tubes and wires, away and let him get down and play.  Sweet, sweet boy.  

And right up until the surgery, he was so cute and giggly and full of smiles, and SO BUSY!  He actually stood up just holding on to the bed rail, for the very first time, this morning.  Until now he would stand only if I held him under his armpits, and today he felt steady and strong enough to be comfortable holding himself up!  Oh, how bittersweet.  To take that away from him, now, when he has worked so hard and come so far.  But the truth is that without this surgery, he would have experienced a lifetime of pain.  He would have probably never been able to walk independently.  He would have never been able to stand up straight.  I am so, so sad to watch my brave little sweetheart struggle through this, but knowing that we are doing the very best thing we can for him.  Because of this surgery, there is a good chance that Micah will one day walk!  

Oh, if only he understood that now.  All he knows now is that he wants mommy to make it all stop and to take him home.  By the way, Micah is getting a chance to practice another new skill of his today, even if he is immobilized.  He has started talking!  And his first (and so far only) word (well, words, technically):  "All done."  Sounds more like "ah guh" but he says it along with the "all done" sign when his yogurt is gone or when he wants out of his wheelchair, so after wondering for a few days if we were really hearing words, versus babbling, we have determined that he is truly communicating with us!  And today he got lots of opportunities to tell me that he was all done . . . as he tried to climb out of his spica cast, as he tried to rip the IV out of his hand, as he tried to get out of bed . . . He is communicating loud and clear that he wants to be all done!

Soon, dear one.  
Soon this will all be over and you will be faster and stronger than ever before.  
Hang in there, brave boy, and soon we will be all done.

Meeting Henry and Ramona

My oldest son, Isaac, has been a big fan of Ramona Quimby and Henry Huggins for as long as I can remember.  (For those of you who spend less time in the world of children's literature than I do, those are two of children's author Beverly Cleary's most famous characters.)  And a couple of years ago, he learned that there were actual statues of these characters, along with Henry's dog Ribsy, that we could go and see.  They are at a park in Portland, Oregon.  Anyway, two years later, we finally made it down there to meet his literary friends.  The rain even stopped for a few hours, just in time for the meeting!  And to top it all off, on the way home we actually drove down Klickitat Street!  You would have thought we were meeting the President, and driving on the White House lawn, for the level of excitement this all generated among my dear little crew!  
Gideon and Gracie (a.k.a. Ramona) and the original Ramona hit it off right away

Blessing and Micah made friends with Ribsy

and Josiah and Isaac were surprised at how tall Henry was!

Sunday, November 4, 2012

Gracie's Little House

Isn't this one of the cutest little playhouses?  A very kind couple decided they wanted to share it with a family with young children, and we are thrilled that they offered it to us!  Gracie would move in full-time if I would let her.  She thinks it is the perfect home!  She lets her brothers play in it too, though.  I think it is just about perfect, too.  Thanks, Cheryl!