Friday, August 31, 2012

Cardiology and the Rear View Mirror

Today Jacob's family walked into Johns Hopkins Hospital for the first time in four months. This past week it has been 16 weeks since Jacob's heart surgery and we were headed to the cardiologist for a follow-up appointment. It's hard to describe being once again in the sacred halls of a place that so significantly healed us except that it is a healthy mix of friendly faces and feeling like home and really never wanting to have to be there again.

And as it turns out, we don't have to be there again - for two (!) years. We will miss those friendly faces but wow that's good news.

While the appointment lasted three hours. Seriously. Still, Jacob did a great job tolerating the echocardiogram (took a nap). And other tests (watched videos on the iPhone).

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Maybe with the exception of the blood pressure.

We all did our best being patient waiting for the doctor.

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When we did finally see him. He said....(yay)... Jacob's heart looks great. Working perfect. Cardiology problems are behind you.

Come see me in two years. Two years!!!!! Wow, what a relief.

(and we might add, much needed perspective about what is really important during a very difficult week. healthy baby heart wins)



Tuesday, August 14, 2012

Cheers to Brutal Honesty

Jacob had an evaluation last week. One of those evaluations that helps determine what services he qualifies for. Maryland has a great home support program and so far we've had good experiences with his PT and OT. Now that he's getting older we are all venturing into speech/language territory (and yes, it's looking like Jacob's parents are going to have to learn sign so Jacob can learn sign but that's another blog post).

Anyway. On the surface these evaluations are quite simple. Government forms... lots of questions. Friendly special educators acknowledging answers with the appropriate Mm-hm. Occasionally asking Jacob to perform some task, etc. Under the surface they are a little painful. Parents aren't often put in the position of needing to be brutally honest about what their child can, or more importantly - cannot - do. See....the optimistic-parent-who-thinks-this-child's-skills-are-amazing spin on his capabilities does not score another therapist coming to your house. Being brutally honest about said capabilities, or lack thereof, does. So honest, Mom was. And score a home speech therapist, we did. So there.


The list of questions also was a reminder (for me) of some things we are supposed to be practicing. Stacking blocks is on that list and we haven't worked on that for awhile. So we tried some practice this weekend.

Jacob loved it. Not exactly.

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Lucky for Jacob, just about the time the block stacking became really intolerable.... the mailman came! And even luckier... she had a package for Jacob!

On initial inspection, that box contained a note on a piece of paper (PAPER!) which Jacob *thought* was the best part of the package.

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Little did he know what other treasures were inside....





W.O.W.

So many thanks to our friend who sent the treasures! Jacob loves them and will surely share with cousin Jonah... they are both going to have a great time with all the pop ups!



Sunday, August 5, 2012

Not Convinced

I can't not post these photos because they just make me giggle every time I open them.

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(Take note, that's as close to a smile as we get when we swing.)


We live exactly one block from a lovely city park. Close enough to just grab the baby and walk over... even for a short, spur of the moment venture in the playground or on a park bench to watch the squirrels. Nice, right?

So all the same good mojo that is true for the baby-in-a-box trick is also true of swinging. You know...back and forth, adjusting balance, etc, etc. So we try swinging. Often. It is also supposed to be fun.

Jacob is not convinced.

 

Wednesday, August 1, 2012

Baby in a Box

Jacob's physical therapist is always coming up with fun things to do during therapy that Jacob loves and most of the time doesn't even realize she is making him work at the same time. Brilliant therapist (she's done this a few times before).

The latest bit of therapy work/play is Jacob in a box. How is this therapy? Well... in addition to giving him some confidence about sitting up by himself and reinforcing spacial/sensory what-not (the hard boundary of the box).... when the therapist (or mom or dad) zoom him all over the house (riding in said box) or tip the box way over side to side, he has to constantly adjust his balance and work to keep himself upright...which he does pretty well. Lots of work. He thinks it's a blast.

Also. The flaps on the box are pretty fun too.

 

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ps... apologies for the lack of action (zooming around the house) shots, it's a lot of action and hard to catch.