Uh-Ohhhh...

               McKenna's new favorite game is to drop things and then say, "Uh-Oh...."  Its adorable.  Even when she does it during church, like she did last Sunday. Its slightly less adorable when she does it instead of taking her afternoon nap, which has apparently decided she no longer needs.  She hasn't taken an afternoon nap all week.  I'm pretty sure she might never again.  Its very sad.  For me.  Since her morning nap is usually about an hour.  Which is not a very long time for me to accomplish everything that needs to get done in a day.  Sigh....  Anyway, I digress.
               So, I am used to hearing her "Uh-Oh"-ing through the monitor when she is in her crib, during her afternoon non-nap.  She throws her loveys and her binky, says "Uh-Oh" after each one, and then eventually cries when she realizes she doesn't have them anymore and no one has come to give them back.  She always falls asleep with her loveys and her binky.  I tried not going in, but then she just cries, and no nap happens.  So then I tried going in, replacing the thrown items, and sternly saying, "No uh-oh," and walking back out of the room.  She then played the game again, on repeat, so again, no nap.  No good solution to this little problem.  Except just not even bothering with putting her down for the afternoon nap, which was today's strategy.  Seemed to work fairly well.
              Tonight, when we put her to bed at 7:30, we heard a few uh-ohs over the monitor.  But she quieted down quickly and went to sleep, so we didn't worry about it.  A while later, Brett went in to check on her, and came back out laughing and telling me that I had to come see.

Tonight's "Uh-Oh" Casualties

She threw out both of her loveys, her lovey bunny, the blanket that we put on her when its cold, the bears and bunnies that sit in the corners of the crib to protect her head from getting banged, the towel that we temporarily had put against the far wall of the crib to stop her from slamming her head into it, and even her glowy seahorse!  Lol.  Every single thing that is in her crib was on the floor.

But she is a smart girl, and a quick learner.  This time, she kept the binky.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 Sleep tight, silly baby.

 

Family Photo Shoot Me

We have a really hard time getting nice family photos.  McKenna doesn't really like to look at the camera or smile, especially if someone else is taking the picture.  She usually scrunches.  Brett doesn't really like to look at the camera either (he prefers to close his eyes).  So, when I saw a deal on Living Social last spring for a photo shoot, I decided it was probably our best bet to get at least one decent family picture.  We bought it, but because of our insane schedules, we hadn't had time to use it yet.  So we decided this was the week.  We have a few days in CT, weather is usually nice this time of year, McKenna is starting to walk and can do cute things in pictures....  Seemed like a good plan.

We were able to get it scheduled for tomorrow morning, initially, which would have been perfect.  Except for the fact that its supposed to pour tomorrow.  Last time I looked, 90% chance of rain.   Given that our shoot was scheduled to be at the beach, that wasn't such a good plan. We had an unexpected (and devastatingly sad) opening in our calendar for this morning because our town's fantastic, amazing, wonderful, Norman Rockwellian (I know, not a word, but its a true sentiment anyway) Labor Day parade has been postponed due to ongoing issues from Hurricane Irene.  (My feelings about that deserve their own blog post, but I have limited time...)  Our photographer, Jason, was thankfully able to do this morning, and so we were good to go.

We all got up, got dressed in our coordinated but not "matchy" clothes, and were on our way by 8am.  We picked a morning shoot, because mornings are McKenna's best times.  She is usually chatty, happy, active, and lots of fun until about 10am, when she starts getting sleepy for her morning nap.  Thus, an 8:30am photo shoot should have been perfect.  Well, today McKenna began sobbing about five minutes into the drive.  Teething, apparently.  Chomping on her fingers ferociously.  Refusing any and all attempts to distract or soothe.  Nothing helped or calmed her down, which is really quite unusual. This lasted pretty much the whole drive.  I was nauseous by the time we arrived, anticipating the stress ahead as we were going to be trying to get her to cooperate for even five minutes.  Sigh.

We pulled into the driveway for the beach, to find a large gate and a stop sign in front of the entrance.  Huh.  That was not expected.  Jason was pulled over waiting for us.  He was equally baffled and said that the parks were supposed to have re-opened post-hurricane last Friday.  But alas.  It did not appear to be so.  Its Labor Day, I would assume people would like to go to the beach...  But not Silver Sands State Park, folks.  Out of luck.  Jason suggested we go to the town beach down the street, and cross our fingers that we didn't get a ticket.  We had, of course, specifically picked Silver Sands because of its gorgeous long picturesque boardwalk over the marsh and the beautiful sand and the fact that we didn't have to worry about getting a parking ticket.  But instead we drove down the street to see what we could find.  Sigh. 

We arrived to see all of the trees, grasses, and plants brown and dead from flooding from the hurricane.  Jason commented that he couldn't believe how dead everything was, because he had just shot a beautiful set of family photos here two weeks ago, and everything was lush and gorgeous.  Apparently outdoor photo shoots after a hurricane aren't a good idea.  Sigh. 

Well, we got to it anyway.  A few awkward shots sitting on a log.  McKenna didn't smile, but she surprisingly wasn't screaming, so that was pretty good.  Then Brett noticed that she was bleeding.  That's right, bleeding.  Because bleeding is what you are going for during a photo shoot, right?  She sometimes bleeds from the spots where we give her the Lovenox injections, but it hasn't happened in a while.  The ridiculous thing about it was that after we gave her her shot this morning (in the stomach), I said, "Let's make sure that we get the Band-aid on tight so that she doesn't bleed during the photo shoot."  I really said that.  And yet, there we were, mid-photo shoot, with blood all over her stomach and clothes.  Sigh.

So, after we recovered from that little disaster, we got some really adorable shots of her by herself, sitting and standing, in the grass (which didn't look TOO dead) and by the fence.  She smiled, and was charming.  Of course, that's because Brett and I were standing behind Jason acting like lunatics to get her to smile.  Much harder to do when we are in the pictures with her.  I am looking forward to seeing those pictures.  I think they are going to be great.  But we do have a million gorgeous pictures of her by herself already...  Again, the goal for today was a family photo.

We posed sitting by the fence for a bit, and I think maybe we got one or two good ones.  Hard to say.  Don't know if McKenna was smiling or scrunching.  Don't know if Brett's eyes were open or closed.  Don't know if my hair was all blowing in ridiculous directions.  Jason was trying to shoot while waving around a plastic bag of Puffs hold her attention and make her smile...  So, the jury is still out.  I was hoping the next set would be THE ONES.

The sun and the clouds were suddenly perfect for some shots with the water behind us.  We hadn't done any water shots yet because the sun was too bright before.  We were finally going to try to get my dream shot, the three of us walking in the sand by the water, holding hands.  It was the one picture that I had envisioned when we booked the shoot.  It was the one I could see hanging in our living room. 

And then, right then, McKenna decided she was done.  DONE.  And by done, I mean inconsolable wailing, tears, runny nose, rubbing her eyes, acting exhausted (at 9:15am, a good hour and fifteen minutes before naptime, mind you).  For about 20 minutes.  No matter what we did.  I might have gotten her calmed down once or twice, but as soon as we moved or began hoping that maybe we could try again, she started back up again.  Jason was exceedingly compassionate and patient while we attempted various things to get her back in the game.  But it was not to be.  Photo shoot time was over.  No dream shot, no pictures in front of the waves, and, I'm afraid, no perfect family shot.  Sigh.

I'm so disappointed.  I shouldn't be surprised, but I guess I hoped with all of our careful planning, maybe, just maybe, it would work out and we'd get what we were paying for.  We shall see when we get our proofs.  My bet:  Awesome, beautiful, adorable solo shots of McKenna, and a bunch of awkward, crazy, funny, imperfect, oddly-expressioned, eyes closed, scrunchy family photos.  At least some things in life are always predictable.  Sigh. 
 

Sleep battles

We always check in on McKenna after she falls asleep and we no longer hear the rustling around, mumbling, and sometimes fussing (or wailing) through the monitor.  Often, it is evident that quite a battle took place before sleep eventually won.

How can this possibly be comfortable?  Isn't your little leg asleep??

Loveys abound, hard to pick which one to use...

And my favorite recent position, laying on top of Seahorse Glowy and lovey, foot hooked through teddy, bent forward in half.

This girl of ours plays hard.  Even when she's asleep.

Why we love Daddy...

One day this week, Brett decided it was time for a wagon ride in McKenna's new red wagon.  It was late afternoon on a cloudy day.  I glanced outside and said, "Its raining."  I assumed he hadn't realized this.  Brett looked out the window and said, "Yeah, it is."  Then he walked into the other room.  I assumed he was going to find something else for McKenna to do.  Instead, he returned with two raincoats.  And a white plastic garbage bag.

Hey mama, what is daddy doing?

Mama, its wet out here!  And dada is tucking a garbage bag around my legs! This is funny!

Mama, I love my wagon!

What now, dada?

Mama, come play with us!

Where is this water coming from?

Huh, that's interesting....

Hee hee.  I like wagon rides in the rain.

Off we go!

 And that's why we love dada.

My last last day at work

        Yesterday and today I went into my former job for two days to do some transition work with my fantastic replacement, Jenna.  My official last day was at the end of June, but Jenna hadn't been hired yet, so we were able to arrange two days to go over her caseload, etc. before the start of the school year this year.  Jenna filled in for me when I was out on maternity leave, and I am thrilled that she has been hired to fill my position now that I have resigned.  My in-laws were kind enough to come babysit McKenna for the past two days, and I went in to work.
        Since its the beginning of a new school year, it felt quite odd.  I felt like I was back to work, getting ready to start a new year.  And I was actually pretty sad about the fact that it was just pretend...  I am already missing it some, and I know I will miss it from time to time now that the school year is beginning again.  I actually quite loved my job, despite complaining about it on a regular basis when I worked there.  (Isn't that always the way?)
         My choice to stay home instead of work has nothing to do with not wanting to work.  I love my career and I love working with my students.  I just felt strongly that my time right now would be best spent investing in McKenna.  We didn't want her in daycare, especially with her medical issues, and paying a nanny would take most of my salary anyway (and as much as I love my job, I'm not really into doing it for free), so it just makes the most sense.  Besides which, I want to be home with her during this exciting and amazing time in her life, as she learns to walk and talk and understand things and communicate and play...  Its amazing, and I don't want to miss it all!  It was a hard choice and I could never, ever judge anyone who has chosen differently, but we talked it through and prayed about it and its just what we feel God has called me to do at this point in our lives.
        I am beyond thrilled to now be a stay-at-home mom.  It is a blessing and privilege, and I am so very thankful for a husband who supports my desire to be home and that I have the opportunity to be home with McKenna while she is so young.  At the same time, it is a very different life than I am used to living.  Its exhausting, first of all, especially with our dear one, who craves interaction with others and intellectual stimulation on a constant basis and doesn't nap much.  During the day, I am by her side pretty much every moment she is awake, and due to her limited napping, that equates to most moments of the day.  There is virtually zero time to get anything done and I have very little time to myself.  I am lucky to have my parents around most of the time, since we are currently staying with them while Brett finishes school, but they will agree with me when I tell you that McKenna is really a multiple-person job.  So its just a very busy and tiring day!         
         Secondly, its not very intellectually stimulating.  Its just not.  Let's be honest, Baby Einstein and blocks and stacking rings and balls and The Hungry Caterpillar just aren't as fascinating to us as they are to our children.  I adore watching McKenna play and smile and giggle and stare intensely at things as she tries to figure them out, but sometimes I miss using my brain.
         Thirdly, my interactions with other adults are pretty much limited to my husband and my parents and a few wonderful friends who I text with during the day.  I love my parents very much.  I obviously adore my husband.  My friends help keep me sane.  But I used to spend most of my days with other adults, working together to help our students, and its just not the same.  Its not bad.  Its just different.
        So for the last two days, if I'm being completely honest, I kind of felt like I was on vacation.  I stopped at my favorite coffee shop on the way to work and finished  my delicious Jamaican Blue coffee while it was still hot.  No one screeched or cried or shouted at me. I ate my lunch at a leisurely pace. I could use the bathroom whenever I wanted to, without rushing.  I used my brain.  We talked about psychiatric diagnoses, complicated family dynamics, counseling strategies, logistics of time management and scheduling, the successes and failures of last year's efforts, the delicate nature of some staff interactions, the very recent death of one of our middle school students and its impact on our student body, and the general day-to-day challenges and benefits of working within our educational system.  We laughed about some of the ridiculous situations that are encountered in this job.  We teared up while talking about the amazing emotional progress made by some of our more challenging students.  I felt intelligent.  I felt interesting.  I felt like an adult.  I felt like my other self.  I even felt kind of pretty.  (Real clothes and makeup and jewelry can have that effect on you).
        And then it was over.  And I was kind of sad about it.  And I came home, for the LAST last time from my job.  And my sweet, adorable, beautiful, amazing daughter was waiting for me.  And when I walked in, she grinned from ear to ear, and squealed with glee, and bounced up and down in her grandma's arms, kicking her little legs and waving her little arms with total abandon.

         And I felt loved.

Surgery is scheduled...

We finally got confirmation from Boston Children's today that McKenna will be having her hand surgery on Monday, October 10 (Columbus Day).  We will be going in for her pre-op appointment on Sept. 30th to make sure that her bloodwork and everything else looks ok for surgery.  We will be checking in at Children's on Sunday, Oct. 9, and hope that she will be discharged on Tuesday, the 11th.
After getting clearance for the surgery at her last appointment, we were hoping that the surgery might be sooner than this, but it is a four-hour surgery, and the long time blocks for September were full already.  So, October it is.  The most disappointing aspect of this (aside from just wanting it to be over!) is that it means McKenna will stay on her injections for 55 more days.  Sigh.  That's 110 more injections, for anyone who needs help with math.  That's a lot and it makes me really sad.  I just really want to be done with that- she will have been on the Lovenox injections for about 8 months by the time she has her surgery, which will have been over half of her little life.  But, we have prayed that her surgery date would be in God's timing, and so I have to trust that October is the right time for it to happen.  Perhaps her arteries need a few more weeks to get stronger, and if that's the case, then of course waiting is the best plan.
We are thankful that her cardiology team and plastic surgery team will be working so closely together and it gives us great peace and confidence knowing that her whole team is in the same place.  And now I have 55 days to figure out how to dress a baby who will have an arm in a cast for a month in cold weather!  I have a feeling she will have some one-armed shirts before this is all over... 

Boston Children's Hospital- 8/3/11

Today we spent the day at Boston Children's Hospital.  McKenna had a sedated echocardiogram at 9 am (we checked in and started sedation at 8 am), a consult with Dr. Newburger (her cardiologist, who specializes in Kawasaki Disease) at 10:30, and a consult and x-rays with her plastic surgeon at 1:00.  We finally got in the car at around 2:45, so it was a long day, but it was a really good day.  She was such a trooper, and hung in there through lots of long, unpleasant, exhausting appointments. 
Her echo shows some continued improvement in one of her aneurysms and a very slight improvement in the other.  Based on her current measurements, Dr. Newburger said that she feels the chances of her developing a clot are very small, which is great news.  She also said that she felt it would be safe for her to have her hand surgery soon, even though that will mean that she has to come off of all of her anti-coagulation meds for a time.  She feels that once the surgery is over, it will be ok to change her medication regime to either asprin only or asprin and Plavix.  Both options are better than what we are doing now, since that will mean we can stop giving her the Lovenox injections twice a day!!  The poor thing has been having injections twice a day for five and a half months now, and her little legs would be very happy not to have bruises all over them anymore.  And her mommy and daddy would be VERY happy not to have to give her injections anymore...  So that is all great news and gives us lots of hope for some big improvements very soon.
Then we met with Dr. Taghinia, her plastic surgeon.  We haven't seen him since our initial consult when she was about two months old.  He and Dr. Newburger have been in touch several times about her care, however, and it is so nice to have doctors who are willing to collaborate so well to make sure that she is getting the best possible treatment.  He was thrilled to hear that she has been cleared for surgery, and we will be scheduling it next week.  It is likely to be sometime in September.  While I completely dread the thought of our sweet girl having surgery, I am also excited for it to be over and for her to have fuller use of her fingers.  She will be in a cast for about a month, and then will have splints on her fingers for another six weeks after that.  Lord help us.....  Its going to be an interesting fall, since I am sure our sweet, fiesty girl is not going to be amused by either of those things.  Yikes....
In any event, we continue to be completely impressed by everyone that we encounter at Children's.  It is an amazingly kind, compassionate, friendly, down-to-earth place, with incredible doctors, nurses, and staff members.  Everyone there is just fantastic.  They have recently been ranked by US News and World Report as the #1 Children's Hospital in the country. We feel so blessed to have McKenna's treatment team located at such a phenomenal place.
And we are so thankful for the ongoing prayers of so many people throughout these past several months.  We know that God has healed her thus far and will continue to work in His perfect way in all that is to come.  So keep it coming!