Ugh

What She Wore: Blue jean capris with a dark wash (I’m mixin it up); black, short sleeve top with a mandarin collar; black strappy sandals. 

Dare I ask people to pray again?   Today I am fed up with hospitals, and medicine, and doctors in general.  I am, in fact, ready to move off the grid, live in a mud hut, and only give my child herbs. 
 
Yesterday we went to visit nuerosurgery.  Charlie’s ventricles seem to be continuing to enlarge.  At this time, there is NO need for a shunt, but we’ll be back in a month for a follow-up CT scan and a consult. 
 
This wouldn’t be such a blow if Charlie didn’t seem to be doing so much better.  He is TRYING to pick up his head, he’s smiling, he’s having more visual connections, I’ve seen him swiping at his picture books.  The other day I even thought he was going to laugh.  He also eating up a STORM.  All this just doesn’t jive with the idea that we could be heading for brain surgery.  My only hope is this: Charlie is three and a half months old.  Most kids, if they aren’t shunted by age five months, never end up requiring a shunt.  So, you know where my prayers are headed this weekend.
 
KM
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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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13 Responses to Ugh

  1. siobhan says:

     Consider me praying.  I\’m praying as I type this.  Charlie has made such fantastic strides and beat such amazing odds, I\’m praying that he will continue to do so.  If he can hang in there for another month and a half then he\’ll be golden.  And Katy, you\’re amazing.  I think that I would be freaking out if I had had to deal with any of this.  You\’re doing great.  And Charlies development sounds great.  He doesn\’t sound like he is far behind at all!  
    All my prayers and hope
    Siobhan

  2. Becca says:

    You got it my friend. Anytime you need them, consider it done!
    Hugs,
    Becca 

  3. Becca says:

    A\’s feet and lower legs are extremely weak, and tend to turn in unnatural directions, so the AFO\’s are meant to try to train what little muscle he has to stay in the way that you and I have our legs. Or at least that is what I am understanding at the moment. I am sure that I will learn more in the coming weeks. He gets casted for the AFO\’s this week, and it is a series of fittings before he starts to use them, we are being told 6-8 weeks from now. You can put your entire hand around his lower leg. That is scary to see, even scarier to actually do, especially when he is 18. I have no idea what physioligically is happening, but at this rate, we, both Mitch and myself, are clearing credit cards fast and furious because we have this weird sense that the pendulum for him is swinging. And maybe not in such a good direction. But I can\’t focus on it, but be ready, just in case.

  4. IRENE says:

    you have mine anytime you want too hun 

  5. Gina says:

    you guys never really left my prayers, so…consider yourselves covered on my end. sending good, positive thoughts your way.

  6. Toni says:

    This will be my mission for the week: Praying. Count me in.
    This has to be more than a little frustrating. I get upset when Mia has a runny nose for more than 2 days. You know, the comment I left on redvanramblings can apply to you too. And if you\’re serious about the mud hut thing, make me an offer. I\’ve seen it done on TV and I\’ve always thought it might be fun to try. Give Charlie kisses. ~Toni 

  7. Nadine says:

     I\’m with you in spirit!!

  8. -c says:

    Don\’t ever be afraid to ask for prayers! There isn\’t anything that can help little Charlie more – and there are many of us more than willing. Sometimes we need to be reminded to keep praying – and it\’s even better when we can be specific. Please, don\’t hesitate to ask.
    -cindy 

  9. Antonella says:

    Yeah, you guys never really left my prayers in the first place.  I really hope that Charlie doesn\’t need brain surgery. Like you said, it sounds like he\’s doing so well. Doesn\’t it melt your heart when he smiles??
    Give Charlie a big kiss for me and  great big (((HUGS))) for you and the hub,
    Antonella

  10. Jaysey says:

    Thinking of you and Charlie–he\’s such a fighter–I am sure it will all work out. 

  11. KEL says:

    I am sorry to hear about the turn of events for Charlie.  I will keep him in my thoughts and prayers.~K

  12. Unknown says:

    Come on kid!!!!  1 1/2 more months to go!!!! I\’m cheering him on out here in BFE Cheyenne.  Don\’t you just love it when they smile at you…you\’re the most important in their life…I just love that.hugs,Mercy

  13. Sarah says:

    I keep you guys in my prayers regularly, just so things keep improving. He\’s made it this far, I highly doubt he\’s going to let anything get him down now! He\’s tough.  

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