2013 Here We Come

Happy New Year’s Eve! 

Connor loves looking in the mirror.
Sometimes he'll even blow kisses to himself!

I can’t believe 2012 is almost over.  Sometimes it feels like this year has flown by and others it seems like it has drug on and on.  Definitely a year for the books though!  All sorts of things to celebrate - our first full year with the little guy, Clara completing kindergarten and loving the beginning of first grade, lots of people visiting us in Pennsylvania and a few fun family get-aways.  And this year has brought more than its shares of challenges – the death of my grandmother, Brent’s spine issue early in the spring and, of course, Connor’s diagnosis of Joubert Syndrome.   

A life changing year.  One that has brought out my greatest strengths and weaknesses.  I’m not quite ready to be thankful for the challenges laid before us, but I’m hopeful that day will come.  I know God has not given me more than I can handle in the grand scheme of things, but sometimes on a particular day or week it certainly feels like it.

Working on hand play therapies

Now we look to 2013.  If 2012 (and 2011) taught me anything, it was that you never know what will be around the next turn, so I can’t even pretend to know what these next 12 months will bring. And even though I’m pretty Type A, I’ve never done well with New Year’s Resolutions.  I feel like I make them at the peak of optimism (and usually after several days off from my job) and then disappoint myself.  Maybe if I call them hopes rather than resolutions there will be less room for disappointment :)  

So some hopes than for the Dean family in 2013…

1. Connor will sit by himself before he’s 18 months.
2. Molly will begin exercising regularly.
3. Clara will ride a bike without training wheels.
4. Brent will play softball again this summer.
5. Connor will stand with minimal support.

Seems like a fairly realistic list for the next 12 months.

Kiddos on Christmas Day

No major medical updates to report in the last two weeks.  The only change is that we no longer have to patch Connor’s eye.  The ophthalmologist wasn’t certain it was doing any good, so we’re just going to see how things progress without it.  We had a great Christmas and now are REALLY looking forward to our vacation in Florida!

Blessings to you and yours in 2013.  Thank you for keeping our family in your thoughts and prayers this past year!

Hugs, Tests, Progress and Vacation

First, I cannot blog today without saying that our family’s prayers are with the community of Newtown, Connecticut.  The whole thing makes my stomach hurt.  Today is one of those days I hug my daughter extra tight and don’t even remember all those times she’s sassy and difficult, one of those days I squeeze my little man and don’t get sad that he doesn’t hug back because he’s in my arms smiling up at me.  I'm so thankful for my children and cannot imagine what these parents whose children were killed are going through right now.



The night after his surgery



Yesterday it was one year since Connor had his eye surgery.  His surgery was to help with his ptosis (droopy eyelid).  They basically did a tuck in his eyelid so that it didn’t cover his pupil any longer.  I remember how tiny he looked on the bed as they rolled him away.  It’s quite a scary experience to turn your child over to a nurse and know the only thing you can do at that point is hope and pray for the best. Luckily, the surgery went ok and while there will be another one in the future, we’re hoping to be able to hold off for a few years.

Connor had his consult with the pulmonologist last week.  She ordered two tests – an upper GI scan and a sleep study.  We had the GI scan already and it ruled out physical abnormalities as a cause for his choking when he drinks and his snoring.  The sleep study will tell us if his oxygen levels are staying where they should be when he’s sleeping and may explain why he snores so much!

We had another appointment with the feeding team this week.  They were happy overall with the progress they saw, especially his head control and posture in the feeding seat.    The dietician is changing him over from formula to Pediasure.  It’s higher in calories and more appropriate for a one year old.  The Speech Pathologist introduced a new feeding routine to give Connor cues when the spoon is coming.  I think he gets it usually, but we’re going along with it to see if it helps.  We finally figured out an anti-reflux drug that doesn’t make him more irritated and that my insurance company will cover.  Hopefully he can stay on this one for the three months the doctor thinks it will take to see if there is any improvement.



Seems to like the stander!



Last weekend we were finally able to get Connor into his stander.  While he doesn’t like the process of being strapped into the contraption, once he’s in it he really seems to like it.  Maybe just a new angle to view life is exciting?!  He stood like this for almost 30 minutes while we read books, played with toys and danced around entertaining him.  This stander is on loan from the ARC and we have started the process of getting our own through CHOP’s seating clinic.



Both the PT and the OT are very pleased with Connor’s progress lately.  The PT found a new set of really tight muscles in his abdomen and back a couple of weeks ago and with some stretches she showed us he limbers up pretty quickly.  This makes learning to sit nice and tall much easier.  Both therapists have said how lucky we are to have Carrie, Connor’s babysitter, as a part of our lives.  She does more exercises with Connor than we are able to on a daily basis and is so attentive to his growth and needs.  He just lights up when he sees her in the morning! 



Sitting with just the Boppy for support!



And finally, the countdown has begun.  We’re going on vacation in January – Disney World here we come!  We have been thinking about going for a year, but almost cancelled when we got Connor’s diagnosis last spring.  There were and are so many unknowns, so many extra costs – how could we justify this vacation?  And then we reminded ourselves that #1 – We have two kids and cannot deny Clara the things we want for her because Connor might have medical bills.  We wanted to go back to Disney one more time while it was all still real for her. #2 – Connor’s a good traveler and will love Disney will all the bright characters, lights, smells and maybe even a ride or two.  #3 – If we stop living, having fun, going places because our child has Joubert Syndrome we are doing no one a favor.  Building memories is important for every family no matter the challenges they face.  We’ve been saving for over two years for this vacation and we’re going.  It’s going to be awesome!