Saturday, July 9, 2016

Semiannual Update

So this is a looooong overdue update.  Haven't updated since February and we have been busy, so we will have one long one. 

1. Today Jasiu had his semiannual appointment with cardiology. His LAST semiannual as he just graduated to ANNUAL appointments !!! Mama is more scared than Jasiu.  He did great at the hospital and confused it with "mom's hospital" (I'll get to that soon). He walked in like a boss, went straight for the toys in the waiting room to wait his turn. Then he walked in and got his height, weight and vitals. He was perfect for EKG and echo as well, at this point John is a pro and such a good boy. He is almost a full pediatric bed in the room, so that's huge for us.  The echo and EKG were read and Dr. H said all looks great, no changes in leak, still mild and function is great and there is no narrowing in any of the areas that possibly could narrow. Then he said we can see you in a year, unless John says something is different or we notice anything off out of the ordinary ! WOW one whole year to see cardiology. This is huge for us. Labs went decently well and the blood draw caused just a few shed tears but nothing a new LEGO set couldn't fix.

with Dr. H.

EKG Time

Getting an Echo like a boss

2. This week marks 6 weeks that Jasiu is a big brother, for those readers that are not on Facebook, I don't think I even shared the news on the blog.  Baby Dominik was born on May 25 and Jasiu became officially a big brother, a job he doesn't take lightly. Emily being a big sister AGAIN, is also very excited, "even if the baby is a boy he's still cute " (her words).  Baby is heart healthy above all else, we had two fetal echos and I insisted on an echo after birth and they are all good and normal.  Baby is doing well and we are all adjusting to being a family of 5. The true test will be when the kids go back to school and I go back to work, but all will  be well I'm sure.

Maternity Session

Maternity Session

Jasiu enjoying being a big brother in awe...

All three kiddos

3. Jasiu is registered and getting an eye exam and another dental exam all in preparation for KINDERGARTEN !!! Another milestone in this HLHSers journey. I can't explain how excited we are that he gets to cross this milestone off his list come mid August. He knows almost all of his letters and numbers to 10 and can verbally count until 20, he is a very smart boy and just as his sister has a remark for almost anything you tell him. He negotiates well with Emily to get what he wants.

Overall, as always, no update is a good update, means that nothing out of the ordinary medically is happening, and since we are on a good streak, we like to keep it that way. We are living as normally as possible with a kid with half a heart, which for us only means that we work hard to remember morning meds, and the fact that we sometimes have to force out our blueberry out of the pool to warm him up. He tends to get cold and lips and nail beds are quite blue, even pulse ox was at 75 for about 10 minutes once, but once warmed up, it got right back up to his usual 95 range.  Other than that we have a typical mischievous 5 year old who has lots of energy, gets in lots of trouble and thinks up of the coolest Lego creations all in that little head and heart of his.

4 th of July Weekend

This is a tired Half hearted boy at 2pm after a long weekend - nap time deserved (rarely happens these days)

We keep praying that things stay this way and keep thanking God for this miracle that we are able to enjoy another day.