Everything is GREAT, but…

I love going to our appointments at CHOP.  The doctors there are really wonderful, and when you visit they make it multidisciplinary, meaning you make one trip and see a slew of specialists.  It’s already worthwhile to see our amazing doctor, Dr. Brandsema, but it makes it all the more worthwhile when we get to see so many others.  Often they sit in on each other’s part and collaborate, which is really patient-centered care.

This was our first meeting since our official diagnosis.  We focused on making sure Harry had no contractures in his joints, which he did not, and discussed the benign cardiology results.  We made a plan for an every 6 month follow up too.  We were able to see a nutritionist to discuss his slow weight gain and formulate some strategies to help facilitate some gain.  Harry drinks 1 to 2 of the 1.5 calorie kids shakes a day, which pack a hefty 360 calorie punch per shake.  We are aiming to add some of that to dinner, and we will hope he continues his slow gain.  He will always be lighter because he has less muscle mass than most kids, and we want him to stay a bit on the light side to aide mobility, but we don’t want him to lose.

We also saw the physical therapist (PT) who often bursts my bubble.  I had a great, positive visit, and of course PT had to go and use the magic words “assistive devices”.  He was talking to my husband as I food journaled for the nutritionist, which I assume was his plan all along because I am never receptive to any PT’s suggestion.  I hate hearing his inabilities and any negative thoughts for the future.  The visit is tough because I have to really dive in to how he’s been doing, some times focus on the negative, and we often cast guesses in to the future.  Dropping bombs like gait trainers and wheelchairs and powered devices does not float well with me.  We’ve been working so hard to get him mobile, and yes, dear therapists, I do want him to keep up with his friends.  I’m certainly not trying to hold him back, but I don’t think technology is the answer right now. Ugh.

It really is hard to hear “He’s doing great, but...” but we will survive.  I don’t know the right answers, but I’m doing my best.  Right now I’m trying to get this little boy stronger, facilitate his development, and give him independence.  It’s not an easy job, but we moms and dads figure it out somehow, no matter who our children are.  Harry could care less about all of this, by the way, as he promptly fell asleep after the PT was done working with him.  He had a great nap as we all talked at length about him (how rude we are!) and mom and dad got their blood taken to do genetic studies.  For the record – my guess is that husband is not a carrier but I am.  Just a guess.  We also were able to meet with the MDA representative and get Harry registered, which opens up a lot of doors for us with assistance and support.  They really are a great organization.


After the visit Josh took us to a really nice farm to table restaurant called Russet.  Thankfully it was a Tuesday night because we were underdressed and Harry was rowdy, but we had a great time and went home full of good food, wine, and a happy day together as a family.

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