Wednesday, August 20, 2014

Hats off!!

Thomas is doing very well. Wounds are healing nicely and so far no infection. We are straight cathing 4x/day and still getting very little when we do, so he is peeing on his own pretty well. He is gaining weight slowly but surely and starting to watch his brothers play and be interested. 
We got his stitches taken out yesterday and they did a head ultrasound showing that his ventricles haven't increased at all, so the shunt is doing it's job just fine. He has no more position restrictions to stay off his back or his shunt side! 
This is where his EVD was. Hair is growing back in and the scar looks great.

The shunt scar is still pretty noticeable. Just recently we have started venturing out in public. Normally Thomas is in a wrap on my chest so his head is the only thing people can see and that is right where the shunt wound is. It is very obvious that people notice it. They first notice the wrap and smile and ask how old then their eyes go to the shunt scar. This brings me back to the 'how much do I tell people' question. Most people do the polite dance and don't ask. They just pretend not to see it. One of the reasons I like going to the hospitals and in for check-ups (probably the only reason outside of it keeps Thomas healthy) is that people just ask there. It's like there is an unwritten code for hospital personnel and other parents with kids in hospital care, they can and will ask anything. I am thankful for that. It seems so honest and open which is comforting to me. I know most people aren't trying to be off-putting, but when they ignore something that they so obviously saw and noticed, it's like they are ignoring him or are uncomfortable with Thomas's diagnosis even thought they don't know it or even just uneasy with a less than perfectly healthy baby.  I know that they may not want to ask because they think it might upset me or maybe I would not want to talk about it, but that is quite opposite. I want all the information out there because I have found when people don't ask or don't know all the information they can't really fully enjoy this beautiful little boy. Maybe it is a barrier of fear or uneasiness with the unknown, but the people that don't ask, don't touch him or get close to him. They don't ask to hold him or even ask what his name is. I don't want to make people uncomfortable, but I don't want them to be scared of him either. He's not too scary of a guy really....

I had bought some cute little newsboy hats for Thomas. Being born so close to the fall, he was a definitely going to need some cute crochet hats. I am a sucker for hats, but I have hesitation putting hats on him because I don't want to hide his scars from people. I don't want the message to be that I am hiding his story and don't want to talk about it. I imagine this gets more difficult as he gets older and maybe can notice peoples glances or maybe even be self conscious of his scars or any other part of his spina bifida. I hope we can set the example to be proud of who you are and help to show those around you that your differences are what make you, you! 


 

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