Better Days

What She Wore: blue jean capris (I went and bought some new pants today, so maybe I can mix this up a little); yellow, polo-style shirt with purple stripes; black strappy sandals.

I met with the early intervention coordinator on Monday to discuss the results of Charlie’s evaluation and create a plan for future therapies.  I felt pretty good when we were done.  Charlie is mostly within normal ranges.  Actually, he’s below the mean, but normal in everything but Gross Motor.  I looked over the goals for gross motor, and I think he’s already progressed since the goals were developed three weeks ago.  One goal is for him to roll from his side to his back–he already does that!  In fact, he also rolls from his back to his side.  Head is still wobbly as all get out, but we’re working on that.  He’s was also slightly above average in social–that’s my little butterfly–charming the pants off the examiner. 
Here’s something crappy, though.  The examiner recommended Physical therapy once a week.  Only problem?  No available physical therapists.  We’ll have to wait until there’s an opening.  Right now they think they can get us an occupational therapist twice a month.  If we qualified for Medicaid, he could go to the local hospital for physical therapy, but we make too much money.  What kind of crap is that?  My husband works hard and makes money and get WORSE health care than people who don’t make any money at all?  I told him we should get a divorce and then Charlie would qualify. 
In the mean time, he also qualified for vision therapy although the examiner expressed her belief that his eye problems have more to do with his muscles and less to do with what he can actually see.  Yay!!!  Many of those types of problems are easily corrected with laser surgery.  In fact, just yesterday he looked right at me when I was on his bad side.  I’m including a picture below. 
Later this week I’ll update you on my crazy shoe shopping, and other fun stuff.
PS: You may also notice that this bath-time boy is feeding tube free!

About takedeux

In one summer I had a baby who was hospitalized for five weeks, quit my job, and moved back to my hometown. This blog is about starting over.
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15 Responses to Better Days

  1. Joell says:

    Your little butterfly…I love that!  
    All wonderful news, except you are RIGHT about the crap about the health care system.  It is messed up.  Regardless, I say, GO CHARLIE GO!!  He will show them all!!!
    Love the pic…nice strategic arm placement, by the way! 😉 

  2. Stacy says:

    Boy is he getting big already.  He looks perfectly healthy to me.  Yeah – no feeding tube!

  3. Toni says:

    Oh my goodness he is like a model baby. Wow he\’s so stinkin\’ cute.
    Moving right along…this is all great news to read! It\’s got to be aggrivating to one day be worried about poor Charlie having to have a million more surgeries…and then the next be told that the problem may be something so simple to fix.
    When you were told that it would be a while for therapy, did they suggest anything you might be able to do with him at home while you wait?
    Caleb and I have thought long and hard about divorce many times. Health care, food, daycare, college tuition money, job placement…you name it. We\’d be sitting pretty.
    Thank you for your kind thoughts about the morning sickness issue. How great would it be if you actually did live close by?! You\’d get me crackers and 7-up and I would get to hold your baby all the time. It\’s a win win situation.

  4. Nadine says:

    So cute!!! I miss havin\’ a baby….I don\’t really want to put my old tired body through that!  
    Hang in there girl, You\’ll make it!

  5. Aimee says:

    what a little cutie…and such a fighter…he must get that from his strong mama….i am so happy to stop by and hear such good news…
    *~*   :o) if you don’t have a smile to give today…  :o) I will give you one of mine…  :o)   *~*  

  6. Unknown says:

    I wonder if the hospital physical therapists would give you some tips on exercises that you could do @ home w/ smiley? He looks so WONDERFUL!That\’s what the BOYS problem was, the muscles around his eye. They just gave him special glasses and some how that corrected the problem he had, he now wears contacts of course…lol….(humming the you\’re so vain song in my head)hug that baby for me today,Mercy

  7. Sarah says:

    Awesome!! He\’s such a sweetie.

  8. siobhan says:

     HE IS SOOOOOO CUTE!!!!!  That is wonderful news that he is doing so well, except for the the healthcare part.  We need some serious healthcare reform.  It sucks that Charlie had to wait for the care he needs.  But Charlie is a little miracle baby, he\’s going to amaze us all.  He\’ll probably grow up to be president, and hellp to fix all our healthcare problems if they haven\’t been fixed yet!  Of course he\’ll be the prez AFTER my Conor is president!  🙂 LOL

  9. Christi says:

    Katy –
    He is so lovely.  He seems like he is doing so well!  Thanks for all of the updates.  I look so forward to them!  Charlie is a tough little fighter, and doesn\’t seem to mind a challenge!  Seems like one minute things are rough and then he shows them that he is moving right along.   

  10. Normal Every Day Life says:

    He such a cutie!!  I can\’t really tell, but does he have redish hair??  And YEAH for the no feeding tube it is amazing what babies can come back from.  My Step-Son was borm 8 weeks early and went through alot of stuff with his bowels.  ( Oh and yes I was around when my step-son was born, I met his daddy when he was 3 months along in his mommy\’s tummy)!  Anyway…..he is adorable!!   

  11. WINDOW LIVE says:

     I haven\’t been blogging but I wanted to check on you guys.  Your guy is absolutely beautiful!

  12. Becca says:

    He is such a cutie! You know, you might want to see if Charlie qualifies for SSDI.With all the life challenges he has had and potentially may have to face down the road, it might be worth looking into. It does take some time, and the hoops may seem hard, but I would ask your son\’s doctors. You might be surprised what doors that opens for you. It does stink when you are insured and cannot get to services, but there are those who can. I have been there done that. Now Mitch and I pay a lot out of our pockets because the X wouldn\’t and there are just somethings that have to be taken care of. Not that we mind. Never. Keep fighting. Charlie is more than a butterfly, he is an eagle and we all want to see him soar! And with you and dad there, pushing and in his corner, there is nothing that little guy can\’t do! 

  13. Antonella says:

    Hey Katy. I imagine all this constant monitering must be stressful. Dante got to some milestones really early, and others really late. Like, Dante didn\’t roll over until he was like maybe 5 months old or something. He also didn\’t sit up by himself until later. Try not to stress that stuff too much, every day is different.
    About the health insurance, have you checked out child health plus?? You may not get free health care, but it may be cheap. Also, maybe if you go to a Health plus office, you can ask them if there\’s anyway to cahnge things on your application so that you can qualify(they did that for me before I had Dante), I learned a whole bunch of little tricks!
    Charlie looks adorable!! He really is amazing, to think of all he went through and look at him now! What a handsome little guy!

  14. Gina says:

    I loved hearing that he\’s a little social butterfly! I hope the physical therapy challenges get worked out so that Charlie can get the care he needs soon.
    He is so handsome!

  15. Lin says:

    Ah he is looking so good.Very adorable,but he has always been adorable.Thank GOD f
    he is doing GREAT.It is hard to believe seeing him now to believe he has gone through
    all he has.God bless all 3 of you.Lin

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