A New Normal…Filled with Busy Days

I feel like I am getting the hang of this “mother of two” situation.  We have a nice little schedule going here.  It helps that the boys nap at the same time in the afternoon.  I stagger things a little bit during the day so that I get some alone time with both boys.  It’s worked our very well and I hope we can keep this schedule up for a little while before they need it adjusted.

Of course, there have been plenty of extra doctor’s appointments thrown in which I will now update you about.  I took Paul for a renal ultrasound (that’s of his kidneys) and the unofficial report is that they look great.  I just got that from the tech, but haven’t heard from the radiologist.  I also took him for a hearing test which was slightly frustrating.  I don’t believe Paul functions high enough and is alert enough for a “reactionary” hearing test.  (These are not official terms, just what I’m calling it.)  What I mean is one where someone says something on one side of him and we wait to see if he turns toward the sound.  He seems to have done this in our daily life, but that’s not a controlled environment.  But the thing is, he was under stimulated up until a few weeks ago.  The boy knows how to zone out, so if he doesn’t want to react to something, he won’t.  The other type of testing the audiologist tried was one that would detect the cilia movement in his ear (or something like that) and in order for that to work, Paul would have to be completely still for like 30 seconds.  Ummm, right.  That isn’t going to happen.  Even during nap time, that won’t happen. He won’t sleep while we poke his ears with tools.  So, I’m not sure where we are.  We don’t have a conclusion on his hearing, but we are going to see an ENT since his ear canals are really  narrow and we want to be sure one of his ears (the adorably goofy one) isn’t blocked with wax or fluid.  Then I’ll talk to our pediatrician to plan our next move.

Good news though-Paul has gained a pound since coming home!  He’s becoming a champion spoon feeder and loves drinking his formula.  What a great kid.

Lastly, we’re still working the details out with the children’s hospital in Salt Lake City. First they lost our referral, then I was scheduling with someone who I suspect had no idea what she was talking about.  Thankfully, the nurses at my pediatrician’s office are on it and coordinating for me, so hopefully, we can make one trip down there, see a cardiologist, do an MRI, and a repair for what we suspect will be the findings.  Is it bad that I’m not entirely sure what we suspect the findings are?  It’s been such a whirl wind of a few weeks that I haven’t had the sense to really discuss it with the doctor.  We’ll see her again in a month so I’ll talk to her about it then.

And now for the good stuff…photos and video!  Enjoy!

Some nice kisses…

 

Some good laughs…

 

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7 thoughts on “A New Normal…Filled with Busy Days

  1. Sew

    I love to see videos! Such a sweet little baby!!! Love his laugh!

    What is it with siblings that want to lay on top of the kids! So funny! Love, love, love!

    More, more, more…. ;)

  2. Katie Jo

    These videos and pictures are adorable. I have an uncontrollable reaction to Paul’s laughing,,,which is laughter itself. What JOY he brings!

  3. Brandy Calvert

    Precious pictures and videos! I’ll keep the medical stuff in my prayers. As a mom with hearing loss myself, I know a LOT about all the testing–had my children tested also, and we have to rely on the cilia test for my middle child, since at 3 he won’t do a reactionary test! I’ll pray for effective response to the cardiology needs–as a parent, one of the scariest moments in my life was learning about a child’s minor heart issues, and you’re dealing with much bigger issues. Both boys are precious, and you’re doing GREAT!!!

  4. Laura M

    Thank you for the videos and pictures! I love to see him smile and I love to watch him with his brother. I’m so glad you found him. I pray everything continues to go smoothly. Keep the updates coming:)

  5. Nanie

    He looks so happy and Ben looks like he’s hav ing a ball with his big brother! Love kisses and hugs to all Nanie

  6. Molly

    Hi! Found your blog thru Sharon Jiretz. Our 4th son has DS! Wanted to give you some hope…Andrew is in a regular 1st grade class and is potty trained! It CAN and WiLL happen:) I wanted to give you my email in case u wanted to chat with someone who has “been there – done that”. It is mollyvoth@gmail.com.
    We are self -employed as well. We got our son qualified as disabled thru the social security admin. (Down Syndrome is an automatic qualifying event). Even if u earn too much $$ for SSI income for him, you may qualify him for Medicaid – which means free medical service for him which will help with your personal policy plan.
    Don’t want to ramble, but wanted to say hi! He looks awesome!
    God’s Blessings to you and yours!

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