update ( 12 march 09 )

Thought I would start out the post with a photo of Corrigan getting his “flirt” on with Petra. I really need to talk to this kid about a more “chaste” kiss for the ladies. He really loves to slobber a big giant wet one on anyone gal can get ahold of. 

It really is cute (and gross at the same time *wipes back of hand across cheek*) how he thinks that he is really “kissing” simply by taking his wide-open mouth and slamming it against any available spot on anyone’s face.

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On that note…

Yesterday was Corrigan’s scheduled visit to Hopkins and everything came back great. His ammonia was 55 but we seriously doubt that the result could be accurate when, last week, he had an ammonia of 32 when I took him to the local ER and he had a fever, vomiting, diarrhea and had an ear infection.  Yet perfectly healthy he returns a 55?  We (mark and I) think that the problem is somewhere in the lab.  These blood samples have to be handled so quickly…there is a very brief window of time that the sample can sit. It already has to be drawn according to a very specific set of rules and the time in which it has to be worked with is much less time than the busy lab seems to get to it. In the best of cases, 30 minutes is when we should be hearing a result. Twenty minutes is not unheard of, why, our little “country-bumpkin” lab had a result to me in 17 minutes just 7 days ago (*grins*..yay us! )  Yesterday, it was over 2 hours before they got a result to us. They are simply overwhelmed and I imagine that not only Corrigan’s sample comes flying in with STAT stamped on it. 

Anyway, we were pretty confident that he was fine and headed back home.  The doctor called, tonight, to tell me that his plasma amino acids came back as “fabulous” and this is considering he just had a 4 day illness. Praise God…we not only handled it at home, hyperammonemia-wise, but we also managed to keep his protein intake at something close to normal and all of his other numbers are stable and behaving as well. Yay again!

His therapist came to visit today and she was surprised at how much he improved on all of his arm issues on his own! A month ago he was putting little or no weight on his hands/wrists and was grabbing things awkwardly through clenched fists. Now, he nimbly picks up the smalles of toys and passes them back and forth between hands like hot potatoes.  He is up on all fours and darn near crawling ( not the one or two movements he makes before he stops..but full-on motoring) and shows absolutely no sign of weakness in his arms or hands.

In fact,his fine motor skills are so vastly improved that he is already proficient at guitar.

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The next shot kills me. He really loves to feel the vibration of music. When Daddy plays he loves to lay beside his Dad and puts his feet on the guitar to feel the vibrations. He will strums the guitar and then stop, in awe, and place his hands flat on the body of the guitar to feel the ripples through his hands. He just looks so….amazed at what he is feeling.

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Wouldn’t it be great if everyone in the house played a stringed instrument? All three of my guys playing guitar?  Sweet.

Other than all of that nothing much has changed. We did have to place our first order for medically managed low-protein foods for Little C yesterday. His insurance will cover two thousand dollars of food per year but they require that the orders be placed in $500.00 purchases.  At first, I was wondering how I would manage to find a freezer big enough for $500.00 worth of food until I got a copy of the order form. Can you believe that a loaf of low-protein bread is $11.99???? A small box of low-protein fettuccini is $10.99! I won’t even tell you how much the cheese costs *falls over dead*  I now have $128.00 worth of bread coming to my house and, oddly, it is only 12 loaves. Disgusting, really…the way they can get away with charging those prices. Thank God for insurance to pay for such an expense.  How on Earth would I be able to afford this kind of food on our income?   This weekend we are going to have to push some bills around to make space to purchase a deep freezer.  Obviously, Corrigan is not going to be eating bread and cheese in the next few months…but he will in the next year and these items have a deep freeze shelf life of 9-12 months…so I am going to be storing a LOT of bread in a freezer for awhile.  I am concerned about the price of one of these monsters…and I do not know if they need a different kind of outlet and I suppose that I should contact my renter’s insurance provider to see if it covers the loss of medical food. We should probably be looking to purchase a generator too I suppose. Oy vey.

I think that I must be getting close to my photo upload limit on the free WordPress account by now. It feels like I am uploading a lot of photos lately but hey, it is what I love to do…if I only ever had any of these printed on paper! I am really bad about that.

My little crawler…look at those unclenched fists!

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and oh my GOODNESS, look at that tummy! You would never know that his diet was managed so tightly. His doctors think that he must be sneaking twinkies when we are all in bed or something.

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and finally, just some other shots that I like…

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One thought on “update ( 12 march 09 )

  1. I absolutely LOVE the one where he is about to crawl… with the fists open! He just looks so RARING to go. Yay @ all the good numbers and getting the cool new food ordered! Btw, mi freezer is su freezer… since you go by here several times a month and all…… *wink*

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