Two Year Appointment

In some ways I can't believe it's been two years and yet at the same time it feels literally a lifetime ago we were in the NICU. We're blessed beyond reason for how well Jonah has done and I feel guilty to admit that most days I don't even think about CDH, or his rough start, or anything other than enjoying him growing up faster and faster each day. He now loves to play on the playset out in the backyard, run after our friend's dog, and talk up a storm. We're even taking a few tentative steps towards planning for a sibling for Jonah.

But, since this is a CDH blog, I'd better get on with the update for that. For the first time I booked both our standing appointments for the same day. Remember Jonah goes to the surgical clinic once a year and the developmental clinic twice a year. This June, I set both up for a Friday and hoped he would stay in a good mood. Developmental first just in case things turned south.

The developmental appointment went well last time and I anticipated the same thing time around. I had even asked if we could be done after this appointment though I suspected we'd be asked to come again at 2.5 years and 3 years of age. But seeing as he was scoring at and above his age equivalent in everything and seeming to learn faster each day, it seemed a bit unnecessary. And, as it turns out, this was his graduation day, no more developmental appointments! They said he was as advanced as a three year old on most things (wow!), particularly comprehensive language. All the therapists were honestly just thrilled and so impressed! They even told me to have a discussion with his daycare center next week about how they'd need to keep him challenged so he doesn't get bored because he's so smart. Yeah, sure that would be popular and forever mark me as "that mom".

Then it was on to the surgical appointment. He got chest x-rays first thing and did fantastic! He sat in this little chair up high and got all strapped in. He was so calm and good they didn't need to do the head and arm straps which helped a lot. Then by the time he got upset it was nearly over. The surgeon looked at the x-rays and said everything looked good, took a quick peak at the scars and said they were A-OK and listened to his chest. It was over very fast and AJ even joked that it was pretty quick considering how big the bill would be. But of course we're delighted that things are going so well. They want to see us back again next year and after that we'll consider stretching out the surgical appointments a bit. There's no hard and fast rules, someone with CDH can reherniate at any time, but we'll stay optimistic but also remain cautious. Being more used to these appointments now, we know better than to ask if this or that will happen in the future, there's just no guarantees. We'll continue to monitor things and take it one day at a time. But, all in all, I just can't think of a single thing I'd want different. And what a wonderful blessing that is!

I may not update this blog anymore, I find I've run out of a whole lot of CDH things to specifically write about. If there's every anything more, I'll pop in...or maybe just to brag on my boy a bit more...but otherwise, enjoy a few more photos.

Those darn grandparents like to feed him way too much chocolate!

Mom prefers the natural sugar! Strawberry picking fun!

One year developmental checkup

We had Jonah's 1 year developmental appointment yesterday at Children's Hospital. He was due June 2nd so they schedule it close to that rather than his actual birthday in April. They again measured him on the Bayley scoring, asking him to perform certain tasks (in a fun way) and seeing what he could do. He enjoyed it overall as the physical and occupational therapists bring toys with them :) Speech just mostly observes and asks us questions. It took only 2 hours this time (as opposed to 3 hours for the first apt).

His measurements are:
Gross Motor: 12 months
Fine Motor: 13 months
Receptive Language (understanding): 14 months

Expressive Language (talking): 13 months

Cognitive (Play skills): 15 months

Excellent considering we were shooting for 12 months! He's actually just under 14 months based on his real birthday so we're happy he's at that level for some of the skills. We'll go back in December for another round of testing and then I think only one more when he's 2 years old.

While we were there we also got everyone's blood drawn for two research studies on CDH. One is called DHREAMS http://www.cdhgenetics.com/ and the other is called CDH Study at Children's Hospital in Boston. Both will be studying our DNA to help them identify the cause of CDH and potentially find a better way of treating it in the future. A bit of a pain and it took over an hour to get it sorted out but in the end we did walk out with the vials of blood that I'll send FedEx to the researchers.

Jonah is so much fun! He started walking about a month ago and now toddles around everywhere. We've moved our childproofing up to the three foot tall level (and learned to be on the lookout at anyone else's house :) He babbles all the time and loves to play catch and be tossed around by dad. Mom is good for cuddles when he's not feeling well, which he's not right now. He has a cold (or something) and coughs constantly. We've been assured its nothing to worry about, it just isn't any fun for him, especially since he's also cutting three teeth, two of which are molars.

On another note, my husband and I are celebrating our 5 year anniversary today. Looking forward to another 75 years or so! :)

Here are just a few recent photos, we sure are loving the summer months! Jonah isn't too sure about the grass some days but he loves being outside! Other days, he eats everything in site, grass, dandalions, flowers, bark and more :)

Our water table is another big hit, and we can hide in the shade during the hot and sunny part of the day.

And yea, no more baby food for Jonah! He loves eating big boy food, from spaghetti to just about anything else (except vegetables, which he's boycotting right now). We're not quite done with bottles yet but he does like a sippy cup of water.