Tuesday, December 29, 2009

Let's Work On Some Milestones

As it turns out, Paxton is ready to begin doing regular baby things.  Like focusing on play and interaction with others (not that we don't do that already, but maybe others besides Mama).  Like working on getting him on a ahem...schedule.  We need to work on developing his head control and strengthening his neck muscles.  All of these things, I am ready to do. I am tired of focusing on the meds and the monitors, not that we won't still have to focus on those, but we can add some fun things in there too. Let's work on busting out the play mats and the bumbo chair from baby cribs

It's funny how you forget to do all of the typical baby things when you have a special needs child.  We have been so focused on right side line feeding, watching the clock until his next med dose, his saturations, his color etc. etc. etc. 
Today after our visit to St. Pete I realized he really is doing awesome. I have yet to see so much enthusiasm from his cardiologists (one of which literally hugged me on the way out, how often does that happen... I completely teared up). I am told he has been gaining an average of .58 grams per day and man was she psyched about this! I was concerned he may not be continuing to gain weight at the steady pace he has been, because he has not been eating by mouth at all much anymore. He used to take up to 4 ounces per feed and now if we get him to take 2 we are lucky.  The rest goes into his g-tube. Man am I glad we decided to go ahead with that surgery or he would be hospitalized for this lack of eating.  His doctor thinks he has developed an oral aversion to eating. In fact, she is surprised he hasn't already as this is very common with single ventricle babies.  We will begin speech therapy to work on getting him eating again.  Other thank that, she was happy with his weight, happy with his blood work, happy with how much stronger he is each time he sees them.  I was so elated to see how enthused she was with him.  I asked her what the plan was for his Glenn (the second surgery).  She said they really like to wait until they are 6 months old to think about it.  I was so happy to hear this because I really was worried they would want to do it sooner since he is gaining weight so well.  The only reason they would go in early is if he were outgrowing his shunt and as of now, his shunt is still to big so that is not likely going to happen!
Today was the first day, I did not pack my bag. You know the one doctors told me to always bring "just in case".  I was freaking terrified that I had jinxed myself by not bringing one, but I didn't need it. I really feel like it's ok to start enjoying being home. We have 3 more months to be together and I am ready to enjoy every moment of them instead of worrying them away!

Moments like this!


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1 comment:

Lorena M said...

I love how they are all around you on the same couch! Don't you just love that? I have an almost 7 yr old daughter and an almost 2 yr son and there are times when one is practically on my head and the other one on my lap! Am so glad Paxton is doing great and he will be so much bigger and stronger by the time he is 6 months old.

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