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Sunday, March 27, 2011

Day 14--hair cuts, hydrocephalus, and Anticipating tomorrow's weigh in

Well, the evening went alright.  I had to give G a hair cut as his hair was just getting out of control.  I had figured I would do a simple trim with scissors, but alas G has  LOT of sensory issues with his head.  The joys of autism....

So what was going to be a quick trim before bath turned in to a full blown hair cut with the clippers because he moved at the wrong moment while I was trimming and ended up with a nearly bald spot.  So then, it was a bit of a wrestling match to get him to sit and calm down so that I could quickly buzz the sides and back of his hair and then a backwards buzz on top to keep the top a little longer, like he likes it.  It came out nice, but it takes SO MUCH out of both of us to do a full hair cut.  He is okay with the clippers as long as they have a guard on, but terrified of them when I have to take the guard off to clean up the back  neck area and his side burns (for an eight year old he has the most amazing side burns--and always has).  He is getting better as he gets older, as it used to take one person to hold him and the other person to quickly buzz his hair.  We had a friend/neighbor who owns a beauty shop and she was really good with him, though even there we had to double team him.  He now will sit fairly still, and let you do it, as he is realizing that it will be done faster that way.  But the tickling hair makes his squirm too, more that most people would.  Over all though we got a good hair cut and then he got int he shower, which helped get all of the little bits of hair off.

J asked me if I would cut his hair too, but I told him that I am out of energy and I would do his hair later this week.  His hair does need a cut, but where G's hair is straw straight like my own (must be the shared Native American blood in us), J's hair is made up of those amazing little, tight spring curls as he is mostly African American.  So doing J's hair requires more energy, creativity, and slow work than buzzing G's hair off.  And as J does sit patiently while you work on his hair, I enjoy taking the time to think about what style would be good for him.  I am really tempted to grow it longer and see what we can do with it, but it is already getting very difficult to pick out each morning, as it forms mats overnight. But both boys have amazing hair.  G's is actually darker than J's hair.  G has jet black straight hair, and J has dark brown curls.

I had a little cry tonight after the kids went to sleep.  Sometimes you just need to cry.  I hate it when the kids are sick, it brings back memories of sitting by J's hospital bed during our numerous ICU stays when he was a baby) and wondering if he was going to make it.  I had a moment of that tonight, because even though he is getting through this cold/sinus/URI, his temperament has been really off--very moody, very changeable--it makes me worry about his hydrocephalus.  I have been trying to find a neurosurgeon closer to here, as his neurosurgeon that did his original surgery and that we have had do all the follow ups is now 8 hours away.  So, now that I am 99% sure we are staying here at least for a few years, I think it is time to find a neurosurgeon closer to follow J.  I had done some initial contact over teh last few months, but have yet to set anything up. Last year's appointment showed a possible increase in ventricle size, but he was showing no symptoms, so the doc recommended that we seek out someone who specializes in static hydrocephalus to follow him.  I have worked on that some (it is not a common speciality). I think I will be working on that more tomorrow, to get him an updated CT scan and in to see a new neurosurgeon.  He should not be this moody, even when sick he is usually not moody.  And as personality changes, particularly moodiness, is an early warning sign of increased pressure, I am feeling very strongly the need to have him checked out.

I did sit by his bed and pray over him for healing for a while. So I feel confident that the Spirit will lead me to the right people for him.  So tomorrow will be productive in that direction.

It is now time to head to bed.  I will just update the food journal as to what rounded out my day....

Dinner was Tuna Helper (generic brand) doctored up with left over veggies and some extra pasta.
And my evening snack was 1/2 sleeve of whole wheat crackers with cream cheese.
And I had a cup of tea and a glass of water.

Tomorrow is my weekly weigh in, it should be interesting...

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