Once again, not much to report. We had a cardiologist follow up yesterday and there wasn’t much of a change. They did an EKG and echocardiogram to monitor Finn’s potential progress. Dr. Vezmar said he didn’t see any changes to the size or function of Finn’s heart from the last time we looked. It’s not really bad news, but not good news either. I guess it would be rather miraculous to see a notable change in just two weeks when a lot of times colds last that long. But, I was pretty hopeful that SOMETHING would change.
The good news is that Finn is “clinically” doing well. He is gaining weight (up to 9 lbs and .06 ounces), sleeping, having regular dirty diapers and all around appears to be a normal child. Wonderful! He has always felt normal to me but medically it just wasn’t so. For now, there are no immediate concerns. Unless he shows additional lethargy or slows down his eating/diaper output we are sort of coasting for a while. We will do follow up cardiology appointments every 4-6 weeks for the time being and will hopefully find out if there are any genetics updates by the end of the month.
We asked about best and worst case scenarios now that Pompe is off the table. Just over 2 weeks ago our best case scenario was worse than anything we could’ve imagined. Now, our worst case scenario doesn’t seem all that bad. Best case scenario is that in 3-6 months we start to see some changes in the size of Finn’s heart and eventually the HCM just sort of resolves itself. We then would have no more use for the lovely cardiologists at The MPLS Children’s Hospital. Worst case scenario involves some more treatment (depending on the genetics outcomes) and potential surgery or placing a defibrillator in his heart. If that is the case then he likely won’t be much of an athlete or at least his athletics will be restricted to golf, bowling and some casual skating or skiing with the family. All things we can live with.
For now we will go back to eating, sleeping, yoga, chasing after a toddler and trying to figure out when I can fit in a shower.
This weekend my dad is coming up to meet his newest grandson and taking us all to the St. Paul Train Museum. Life with boys, I love it.