Dreaming in Color

Thursday, March 10, 2011

Weight Check

Hi all, sorry again for the pause in updates,we've been busy.  Oh, before I forget, I have some really cute pictures of The Drop (Bean) I just have to remember to get them off my camera.  Also, FYI I gave up Facebook for Lent. 

Ok, Bean had an appointment with Dr. Moyer (GI) today and he weighs 16 lbs 1.5 oz and is 26 and 3/4 inches long.  Physical therapy is getting cut down to every other week with Speech staying the same at once a week.  We are also trying to make all of his feeds take place at night while he is sleeping with just like an hour of feeds in the afternoon.  The bigger and more mobile he gets the more unrealistic it is for him to be hooked up to a pump, even with the backpack; that pump is freaking heavy and we're just not going to make him do that.  I cant believe he is almost a toddler.  Oh, did I mention that his birthday party is going to be at The Little Gym of Lake Oswego on Sunday, May 22nd from 10:30 a.m. - 12:00 p.m.?  Can't wait:) It's Elmo and Sesame Street themed. Heavy in the Elmo.

So we did the bottle thing for a week but then Ashleigh our Speech Pathologst said to just forgo the whole bottle thing because eating from a spoon is more advanced and since he does that better than a bottle we will just stick with that.  We are also meeting (getting a second opinion) with his new nutritionist at the end of March.  I want him to be monitored more closely by Nutrition so that we can make sure that someone is always up on how much we are feeding him because right now we are basically doing everything with his feeds on our own, in terms of raising the rate and volume-Bean just needs someone more hands-on.

He has done this weird thing, a handful of times now where he kind of seizes up in our arms, it's a bit disconcerting.  It only happens when we are either holding him or lifting him up from a sitting position to be held.  He gets real stiff and shaky from the waist up, for a few seconds and then is fine and relaxed.  He is not bothered at all by these.  Of course, I just got on YouTube and Nat'l Institute for Neurological Disorders and Stroke and I think it may be Action Myoclonus.  It sounds most like what Bean does and says it is caused by brain damage from lack of oxygen and blood flow to the brain which happened multiple times when he went into cardiac arrest.  I even recall a nurse or two of his saying that he may end up with neurological side effects from all those times that he coded.  Or, I could just be bat-shit crazy and instead of giving up Facebook for Lent give up the whole damn computer altogether.

Oh, speaking of brain function, Ashleigh did a Expressive/Receptive test on Bean Monday night and he is 2 months ahead of his peers in his receptive skills and right on target with his peers in his expressive skills.  Ok, I need to go to bed, it's almost 4 am. :) 

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