So today has been another long day for your mommy and your daddy, but the good news is it was a pretty slow day for you little guy. No tests, no poking, no prodding, and the doctors were only talking to us today so you got to hang out in bed. Pappaw came up today too, which is always a good time but was especially good today because he brought you presents. You may have to get used to this because I have a feeling your pappaw will be bringing you lots of presents. Don't let me forget to tell you about these presents tomorrow, because they are special ones that we are going to use a lot.
Earlier I guess I kind of left you hanging on the edge of your little crib pad when I told you that your mommy and daddy were going to talk to your doctors about what all they think is going on with you. Well we thought we were going to talk to one or two doctors but because you are so special a lot more than that showed up (and two more of them tried to be there but were busy with other little kiddos). They each took turns telling us about who they are and what kind of doctor they are, and then they told us what they know about you. Turns out they know a lot about you little guy.
First the nephrologists talked about your little kidneys and how they have been watching them for a while (that was all that pushing around on your belly they have been doing with that funky gel covered thing). As it turns out your kidneys aren't in such good shape but they are starting to get better which is great news. Then we talked about your little head and the pictures they took the other day. As it turns out those pictures showed us that your little head is built just like it should be, nothing out of the ordinary at all. That also included how well your beautiful blue eyes looked for their test. Next we talked about your little nose and how one side of it seems to be a little bit clogged. They weren't too worried about it though, they said they can fix that one easily. Then they revisited your little ears, and they told us that there is a decent chance you may have some trouble hearing but based on how well you are responding when mommy and I talk I would say they may not know how strong you are yet. Last was your little heart, and I only say little because you are so young. If they had any idea how tough you are and how much you are doing for your mommy and daddy they would have said you had the biggest little heart ever.... But they told us that your heart was a little different and that they hadn't seen one quite like it before. So that means they have to talk to some more doctors and then they are all going to bang their heads together (he may have said put but this was just how daddy pictured it) and decide what to do to fix that little heart of yours. It may take some work but they seem like really good doctors and you are one strong little guy.
Now that is a whole of of things for one little guy so the doctors started looking for a reason for all of those things. They think they have found that reason but they are sending off some of your blood to test and see if they are right. If they are though, then you have something that the doctors call CHARGE syndrome (http://chargesyndrome.org/about-charge.asp). Now I won't go into tons of detail about it because to be honest there are all kinds of ways this CHARGE thing can play out and the doctors say the best thing to do is wait and see what happens when they get your little heart fixed. So I know that sounds like a lot there little man but mommy and daddy are trusting in God and those wonderful doctors to help you get through those things so we can get back to the business of playing and cuddling and all the fun stuff.
For now though, I think mommy and I may cuddle up on the couch so we can have another family night with just the three of us. I know you have lots of fans out there who will want to talk to us but for now I think its family time, cause we need to spend some time with our little miracle :) I can see you have already put your feet up to relax so maybe we will find something fun on tv to watch together....
I love you Connor.
- Daddy
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