Im pleased to say that Jacks EKG and ECHO was very normal, showing a healthy heart and as his Cardiologist added, nothing to say he had Mito! Im so relieved, as this is a big one for our kids. This is the first time we've seen Cardiology since his Mito diagnoses at Childrens. Dr. M. said that we wouldnt need to follow up with him for a year or two, unless he was showing some red flags of cardiac problems. So hopefully we can feel pretty good that for now anyways, we're not seeing any progression in this organ. Dr. M. did add that we have to keep in mind that it could still happen because he has Mito and this is a progressive disease, telling me gently as if Ive never heard that before. BUT I really liked him, he was very thorough and very kind, spending a lot of time getting to know Jack and his past medical history.
NOW I cant say the appt. started out so well. Of course Jack was very sleepy and I had to wake him and carry him over to the scale to get a weight. So I started to wonder if we could do this appt with him completely asleep! Thankfully he woke up enough to follow some commands. AND as you can see, very pissed to wake up to sticky tape all over his naked chest!
As for the brighter part of our Childrens visit, Jack didnt say boo during his blood draw! No crying, No wiggling, nothing. We have a new Lab tech that we really love, Hector! He's this huge guy but so very gentle. Jack asked him what his hours were, he-he.
and then back to more sleep...blah.
Pulmo appt Monday, Getting myself prepared for this one!
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4 comments:
So happy to hear his heart looks good!
I am sorry to see the the EEG didn't turn out as nicely.
I will pray for you guys that even though the pulmo appt may not be what you want to hear but that there is a treatment or something that will be able to help Jack to feel better. I will look for that update!
Have a great summer! I love all the pics you post especially the ones of Jack looking well and playing with his siblings and cousins. So nice to know that he is still having some good times even if they are few between.
Thinking of you always!
Yay! One less thing to worry about!
Jack looks like he was very unhappy to wake up to tape and leads all over him...poor guy...that's the difference having an aware/cognitively unaffected child...he knows everything he has to endure and yes, he looks pissed!!!!Lol
As far as Hector....the blood GURU....he is requested by me at every blood draw...he is amazing and so sweet...and fast, and Hudson rarely cries!!!!
Hope we meet up Tues...I will look for you after the apt. You can text me too if you need to get a hold of me during the apt.
Looks like the sun is peeking through today....wahoooo!
Hooray for good news! You guys have been in need of that!
Yay for normal. I've been thinking of you today and hoping you got good, useful info from Jack's appointment today!!
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