The Sum of his Parts

In the recent months, I have found myself in hesitation to write about certain things, like the many trips to Colombia Presbyterian Hospital for Specialists as we go over all Grady’s important parts in great detail…. some for preventative reasons and some because well little man has some very treatable yet ongoing health issues. I find myself in this odd limbo between wanting to vent, being frustrated yet at the very same time… oh so grateful, thankful and humbled. Hesitation, because sometimes people read stuff like this and choose to see the negative and the diagnosis and never see through to the SUM of his Parts or God’s crafty work in our Grady.

You see this blog post started really cooking after something was said to me this past wednesday  by the Audiologist….

“he is so cute, it’s too bad his parts are messed up”

Let’s rewind for a moment…if you make it through all the updates, I will tackle this statement. ….

On wednesday we visited the ENT and Audiologist for a follow up on Grady’s hearing. We found out a few months ago that he had fluid in his ears and it was possibly causing mild to moderate hearing loss. When I arrived (after a very long trip) they had a substitute audiologist working the equipment, we were the first appointment of the day and let’s just say he was clueless on how to run the buttons and microphone. So we sat in the booth waiting for odd sounds to ripple out the speakers and watched to see if Grady turned his head towards the sound. I could tell the audiologist was frustrated, Grady was frustrated and well I was just straight up ungracefully annoyed.

He came into the booth to explain his position and that he was not familiar with the equipment (no wayyyyyy), Grady looked up at him and smiled (of course) he then continued to  look at me and Grady and said ” …”he is so cute, it’s too bad his parts are messed up”…. GASP. All I could say was, “yeaaaahhhhh” (insert sarcasm, long pause, a slight head nod and eye roll)

The ENT unhappy with the lack of results sent us back into the booth with now 2 Audiologists, and still the results were still pretty inconclusive. I told the one Audiologist that came into the booth with us the second time around that Grady is attracted to faces and that he was less likely to look from left to right if he was sitting in front of him.  My observation was not understood or taken into consideration.  Overall they recommended we find a new Audiologist that would do a sedated ABR.

It was really fuzzy, maybe it was the peculiar statement from the audiologist that threw me or the fact that they really had little to no experience with children with Down Syndrome. All together we left puzzled.

Thursday we had a follow up with the Pulmonogist to check on Grady’s lungs and his asthma. He kindly let us come late after breaking down on the way there. Whew. (see post below) The Dr opted out of another chest xray because he was pleased with what he heard out of his lungs… He asked us to continue breathing inhaler treatments twice a day. Good update.

We also got blood work done from the Gastro doctor to try and figure out why Grady is having severe reflux. The hope in that is we may be able to uncover if he has any allergies that we were unaware of. He is spitting up, up to 50+ times a day, this is a mystery to us and we are having a hard time keeping up with it.  We have started him on a different anti- acid and are moving forward with a stomach emptying treatment of Erythromycin four times a day.  If this does not work, we are moving forward with a endoscopy.

So lastly, while I was in Colombia I ventured on down to the 5th floor to check out the Audiology & ENT  Department (since all Grady’s other specialists are there I figured why not, ecsp. after the day before nightmare experience ) I found great Favor as we learned that they actually do accept our insurance, they would see us right away that day, and we would be able to get a new hearing test for Grady. It happened so quickly that by the time I sat down with the Dr, who didn’t have our charts yet, I forgot to mention Grady had Down Syndrome.

Our conversation went something like this:

Dr. ” Does Grady have any other conditions I should know about”

Me ” no besides reflux, thyroid, ashtma I think that is it”

Dr ” Does he have any other medical conditions I should know about?”….

Me  ” No, not that I know of”   ….

Dr.  ” Does he have any syndromes I should know about? “ ….

Me (as I bust out laughing) ” Well you know he has Down Syndrome right, is that what you were getting at…? “…

Dr. “Yeah for a second there I thought I was going to have to make a diagnosis on a 15 month old, that would have been a first”

(This was a rather welcomed moment in my day, I always just assume people know he has Down Syndrome)

After all the testing and consult…We ended up making the decision to move forward with getting Ear Tubes in Grady’s Ears, as well as a sedated ABR while he is under anesthesia and if the Gastro or Pulmonologist want to move forward with any procedures they will do so at the same time. Therefore getting it all done in one shot.

Grady Therapy Update: Grady is getting Physical Therapy 3X a week , Speech Therapy 3X a week, Special instruction 2X a week and we added OT a few times a week starting soon, all within the comforts of our home. Sometimes it is hard to juggle everything, and most weeks we don’t make every appt due to scheduling conflicts, but I really believe Grady is gaining a lot from Early Intervention.

He is a blessed little boy.

Milestone Update…

Grady sat up all on his own this past week. I woke up to find him sitting upright in his crib with a big ole smile of accomplishment… Just a few days short of 15 months he decided it was time to see the world from a different view on his own conditions. We are so beyond proud.

Grady waived back to TWO different people in the elevators at Colombia after they waved to him. Huge!

Grady put a cookie in his mouth and tasted it a few times, showing us he is interested in self feeding. Just him bringing it back up for a second taste is Huge for him. He didn’t eat it or bite it, but this movement and interest was great!

Back to that silly thing the Audiolgist said to me…. Well he is right he has some parts that are to this world ” all messed up” and yes medically speaking his parts aren’t really working perfectly, but I will say this and it isn’t a “smooth it over with whip cream and a cherry”

The Sum of his Parts is everything you see in these photos. He is an incredible little boy, with incredible little parts that need a little help from some incredible doctors with God given gifts to make my incredible little man all that he can be.  I will without a doubt in my mind continue to pursue the best medical treatment from the best doctors no matter the distance or drive, time or money, will switch doctors or therapists when needed, follow my mommy instinct, and continue to pursue the best for my most incredible little boy.

That Audiologist is very lucky that I had my morning coffee already, that I love Jesus, and Grady was on my lap, Oh and I only hope for his sake that no one ever makes broad statements about his parts.

At the end of the day, Grady’s smile smoothes me over, the way he cuddles up next to me brings back sanity, his presence is proof of Faith and the wonderful works of our God.

See I told you no cherry on top of that right?

If you made it through this incredibly long post, I promise just photos next time 😉


20 thoughts on “The Sum of his Parts

  1. Jennie says:

    Um, wow. Even after thinking about it for a few minutes, I don’t have a good response to the (rather ignorant?) audiologist. Eesh.
    Great post, Erin. And thank you for the updates on how G is doing health-wise.

  2. Ilisa Ailts says:

    I love all your posts Erin. It wouldn’t be right if it was all sunshine and lollypops. You sharing your “tests” allow me (and others) to think about situations that we may have to respond to and also to think about our own attitudes and behaviors that are hurtful towards others. The whole package…

    Sounds like Grady has tons of help and support, I hope/pray you do, too (that is also why you can share, because we can support you).

  3. Lindsey says:

    I want to hug youuuu!! I think you need a card – a business card with just your name, your blog address, and something like “For more information” or “YOU might need more information”… no? or just hand the guy a Bible and tell him you’ll pray for him. Perhaps?

    BTW, Grady’s parts are not messed up. They’re exactly the way God intended them to be, aren’t they?

  4. Staci says:

    Loved your post! So excited to hear of Grady’s recent milestone! Very disappointed in the ignorance and lack of professionalism shown by the audiologist – glad you were able to find a great alternative quickly and come up with a good treatment plan! I always enjoy seeing your beautiful photos and reading your thoughts… most of which I share as I reflect on how God creatively designed my daughter, who also happens to have an extra chromosome! Hope summer will bring a slower pace for your family and a break from doctor visits!

  5. Kristin Montgomery says:

    Great post Erin! And yay Grady!!!!! Carter also went to the audiologist and they found fluid on his ears, she scared me to death telling me he could have hearing loss. His pediatrician said there was nothing to worry about, were about to get a visit to an ENT dr just incase. I love the sweet pictures of your adorable boys!

  6. Lara Font says:

    He is so stinkin cute!!! I want to grab hold of him and hug him! Hang in there Erin, God has the perfect plan!!! Just curious, have you done OAE’s on Grady?? The booth test isn’t always the best marker of the test especially as kids get older, the OAE is done non-sedated in the ENT’s office. A small tube is inserted in ears and measures brain response to sounds. You have to hold tight so they can get a read (and Parker likes to pull it out of ear), but it works! Parker hasn’t ever had fluid, but we always have the booth test and OAE tests done at every appt to check hearing. Just a thought..and I hear you on the “sum of the parts” we have a small urology issue in our house and I keep asking myself “why” Lord? The heart, now this?? I remind myself, “we ar eto have joy in the journey!!!” Congrats grady on sitting up!! Whole new way to view the world!!!!

  7. Elisabeth says:

    Such a sweet update! Your boys are so very cute. As I read your post I remembered back when my Wesley was a year old and we were looking at putting tubes in his ears and getting an endoscopy to try to identify why he was spitting up copious amounts every day. God has been very gracious to help us identify what was causing these things for him, and I pray that He will do the same for you.

    On another note, I don’t know if you have an Easter Seals around you, but we have found that the audiologists that work at our Easter Seals are spectacular. They work with lots of kids with all kinds of special needs, and we have had lots of success with getting Wesley’s hearing tested there since he was just 12 months old. Again, I know things are different in every state, but for us Early Intervention even pays for Wesley’s hearing tests when they are done at Easter Seals.

  8. Courtney B says:

    Grady is perfect, God did not mess anything up within that little boy. I’m glad I was not present for that appointment.

  9. Melissa says:

    Even with Claire sitting on my lap I’m not so sure I would have been that kind to the audiologist. Glad you found one that worked out better! Love all the new pictures of your handsome boys!

  10. sheena Greene says:

    As I read all that you said about this appointment and the way you handled this was amazing and by the time I got down to the bottom of this post I was in tears! I leave your post so blessed and encouraged!! You are such an amazing momma and the way that you love Grady and are such an advocate for him is simply breathtaking! I feel so honored to know you and have you as a sister in christ!

    I loved how you put the statement “That Audiologist is very lucky that I had my morning coffee already, that I love Jesus, and Grady was on my lap, Oh and I only hope for his sake that no one ever makes broad statements about his parts.” That sounds exactly like something I would say or at most think! I am just amazed at some people’s remarks.

    Thank you for blessing me yet again!!!

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