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Ups and Downs…

10 Jan

…And I’m not talking about the organization in Calgary (www.upsdowns.org)!  I’m just talking about how I have felt about Jake’s progress lately.  I have my ups, and I have my downs.

Ups:

I feel like Jake is way more alert and attentive to his surroundings.  We went back to water therapy yesterday, after having a three-week break for the Christmas vacation, and I noticed a HUGE difference in him.  He was interacting with the instructors more, giving them more eye contact and way more attention.  We always do singing at the beginning and end, and there is usually some sort of toy / object that goes along with the song.  And Jake was holding onto the toys / objects for dear life!  Whereas before Christmas, he would have looked at them, and not been the least bit interested in picking them up, putting them in his mouth, or interacting with them in any sort of tactile way.  So, that feels like progress to me!

Eating has become another huge “up” for me.  Jake is a rock star!  He LOVES food, and has done really well so far in the eating department.  We are getting him used to as many new foods as possible (one at a time, of course!) and so far, the only thing he doesn’t like is chicken (I think the texture is a little much for him at this point!)  Also, I feel like he is starting to get the routine of mealtimes down.  When I put him in his chair, he looks at me expectantly, and opens his mouth, even before I have the food ready!  I do not know very many signs yet, but I do know the signs for “hungry”, “food”, “more”, and “all done”, so I sign those things to him before and after every meal, and I really do think that he’s starting to see what I’m doing and register it as corresponding with meals.  Again, that feels like huge progress for me!

Downs:

I took Jake to get a follow-up echochardiogram (ultrasound of his heart) yesterday.  When he was born, they found a tiny hole in his heart.  Everyone assured me that this was no big deal.  That it was a very common ailment for preemies.  That it would probably close up on it’s own within a few months. That it had more to do with being premature than with his diagnosis of Down syndrome.
It has now been 8 months, and so we went to do the follow-up, to make sure the hole has closed up.  And guess what?  It hasn’t.  Boo.  I was honestly in shock when the ultrasound technician told me that she could still see a tiny hole.  It wasn’t even information that was on my radar; I was so sure that it would have been a non-issue by now.
It’s not a big deal, even at this point.  I will wait to hear from my pediatrician, but likely the answer will be that we will just keep monitoring it for longer, and see if it closes up on it’s own in the next little while here.  No one seems overly concerned at this point.  But I’m still discouraged.  To me, this is a down.

I guess those are my thoughts for this week.
I’ll leave you with a picture…:)

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6 Comments

Posted by on January 10, 2012 in Uncategorized

 

Tags: , ,

6 responses to “Ups and Downs…

  1. Shannon Fox

    January 10, 2012 at 3:40 pm

    Hey Karyn

    Your story is one that I read with eagerness.
    Jake sounds totally amazing. I feel like as the mom of a preemie I understand many of your struggles. Although Chloé (6 months today!) is doing well, she too requires follow up appts for a kidney issue. It is hard to indulge in pure enjoyment of your child when there are constant fears and what ifs. I can only imagine that life with Jake, and his diagnosis of down syndrome is that much harder than what we deal with but I wanted you to know that I to some extent understand your struggle and have sympathy that you don’t get to experience mommyhood in the “normal” way. I love reading your story because it is one that brings perspective and encouragement. You are a great mom, and your son is adorable.

     
  2. Felicia

    January 10, 2012 at 3:42 pm

    Jake IS amazing and you guys are doing such an incredible job with him. We will be praying about this “down” with you guys for sure. Love you all lot’s!

     
  3. Sonia McKnight

    January 10, 2012 at 4:38 pm

    he is sooo beautiful!

     
  4. Laura

    January 10, 2012 at 7:12 pm

    Please keep us updated on Jake’s heart. I hope that hole closes on its own! Jake is doing great. I’m working on signing with Ben too but I often forget.

     
  5. Sandra Chadsey

    January 10, 2012 at 7:45 pm

    Hi Karyn, Those are really great “ups”. Eating, Eye contact, interaction and grabbing onto the toys are really great signs and to be able to have time markers of “in the past 3 weeks” is so encouraging and positive. Keep reminding yourself of how well Jake is doing and it is because of all your labour and love – You are doing an incredible job with Jake!!! he is a real cutie. We will pray for his heart and that God will take care of it.

     
  6. Sarah Kemmers

    January 21, 2012 at 7:52 pm

    Also… hates peas.

     

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