Jabulani Jonny

Hey guys,
Here’s a video of Elliot’s B-day party in case you missed it. 

(video embedded for those on RSS)

Yesterday was Elliot’s 1st birthday, though the party’s today.  It’s amazing to see how far he’s come in this short time.  I remember back when we first got the news of his HLHS and the restricted atrial septum.  As the picture grew clearer during those few months before birth, we had no idea how this was going to play out.  We didn’t know if Elliot was going to make it through the few minutes after birth, or through his surgeries, and what that life was going to look like.  To say that we struggled with faith is putting it mildly. 

However, Elliot arrived around 8:30am July 24th and he came out pink and crying, exactly what we’d hoped to hear.  Though they were predicting that he’d need immediate surgery after birth due to the restricted atrial septum, in fact they had the OR ready next door for it, his sats were actually good enough and they decided he didn’t need that immediate operation to fix the ASD.  That in itself is a little miracle.  When they did the first of his HLHS procedures at 6 days of age, the surgeon explained that he had no idea how Elliot was stable for that week.  His atrial septum was completely closed off, which means no oxygenated blood should have been getting to his body since he didn’t have a left ventricle to pump it there. 

We spent 2 1/2 months at Children’s Hospital of Philadelphia as Elliot recovered from his first surgery and we tried to get his oxygen sats up to a normal range.  We all got home in mid-September, but did a 3 week stent in Egleston Children’s hospital in October.  We went back to CHOP for his second surgery right after Thanksgiving and were back home after one week.  That was a whirlwind trip.

So here we are after a year and i thought everyone would be interested in seeing how Elliot is doing.  Fantastic is all I can say.  Granted, he’s still on oxygen and has his feeding tube, but he’s doing extremely well right now.  He’s progressing like the little boy he is.

To help you see how well he’s doing, check out this video of some highlights from the last few months.  Happy Birthday Elliot!!

This morning we had an appointment with Elliot’s cardiologist for an echo cardiogram and a general checkup.  Lately Elliot’s O2 sats have drifted lower, averaging in the mid-70′s during the day and kind of bouncing around at night.  The doc thinks his Pulmonary arteries may be clamping down a little, which restricts the blood flow to the lungs. 

Since the HLHS repair is based on a passive blood flow system to the lungs this has the effect of keeping his sats lower.  He suggested trying some medication to “relax” the pulmonary arteries, which we’ve actually asked about as early as last October while we were staying at Egleston.  Looks like now may be the time to try.

We’re still anticipating going back up to CHOP in Philadelphia the first part of next year for his third operation, so it looks like he’ll be on oxygen at least to that point.  Hopefully the new meds will help to boost his sats and the Fontan (3rd procedure) will reinforce that. 

I have to say that it felt a little strange to be back in the doctor’s office talking about going back to CHOP and what not.  Although we’ve been on oxygen, a feeding tube and plenty of meds, it feels as if it’s been forever since being in the hospital. 

Well he turns a year old next Thursday and he really is doing great.  He’s crawling very well right now.  He’s standing and learning to walk a little while we hang on to him.  He’s actually starting to eat pretty well now too, which is great.  He really is an amazing little person, very laid back and a great sense of humor.  I’ve got a video I’m putting together of all his little antics.  I’ll post it in the next couple of days so you can see how big he’s gotten.    

Well blog posts have been slow around here the last couple weeks.  There really hasn’t been a lot going on outside of work and home stuff.  I haven’t been taking any photos lately and I’m missing the camera. 

We’ve really been working with Elliot on his crawling and eating.  He’s doing so well right now, eating much better and crawling all over the place.  We’re pretty excited, maybe that’ll mean the end of the feeding tube before long.

Here’s my quick update for the RagamuffinTop Challenge

This week has been  crazy busy at work, however I’ve gotten up each morning and met my training goals for the half-marathon in November.  I signed up on Los’ RagaMuffintop challenge so this serves as my weekly update. 

This week I well on the training and the eating.  I’m taking the running a little slow due to ailing knees.  Hopefully I can get them up to speed in the next few weeks.  Here’s what this week looked like:

Monday:  My Nike+iPod didn’t save this workout due to user error.  However, I did 3.11 miles in a run/walk fashion.  I would run 1/2 mile then walk 1/2 mile, alternating for the duration.  On Monday I weighed 193.8lbs. 

Tuesday:  I hit Gold’s Gym for an upper body workout.  Resistance training is the key to skinnying down.

Wednesday:  Same as Monday.  See…

Thursday:  I ran a mile, then did some 100 meter strides.

Saturday:  I just did a nice 30 minute bike ride at a pretty decent pace.  I didn’t premeasure the distance so I’m not sure how far it was, maybe 10 or so miles. 

Yesterday morning I weighed 190.3, after hamburgers and some cobbler yesterday afternoon… hey it was my free day…  I weigh 191.4 this morning.  I think next week I’ll be able to drop several.  It usually takes my body a couple weeks then I can drop pretty quickly.  We’ll see.  Hope you guys had a great 4th.