Gideon Update!

We have had lots of doctor appointments recently and we still have quite a few more going into December; so I wanted to let you guys know about some of the results that we have recently received.

Last month, Gideon was in the hospital for a virus. The urine test and nasal swab came back normal. But their biggest concern was that his platelet count was low, 85K. (Normal is in the 130’s.) The hematologist then asked us to come back in a few weeks for a follow-up blood test, to see if his count had improved once the virus was gone.

That appointment happened yesterday and Praise Jesus! his counts are in the normal range!! His hemoglobin levels were still slightly down (11.5 is normal and Gideon is at 11.2), but the doctor thinks this is normal for Gideon given his diagnosis. My only complaint was that they had to stick him twice to get enough blood. And when they pricked his foot, it left a slash (it’s like he moved when she stuck him). Needless to say, his finger and foot were bruised to a deep purple color and I’m so glad we don’t ever have to go back! Little G was discharged from their office with a clean bill of health!!!

Well, clean for him.  😉

We also had a follow-up ABR (hearing test) on Halloween. The results showed his hearing is stable; meaning Gideon has not lost anymore hearing since his last test!! This is also very good news!! We have a follow-up with his audiologist later this month to pick up his new ear-molds.

Next week is crazy. Gideon is going back to Scottish Rite Hospital to see about his feet and what his future looks like in the way of standing/bearing weight. Also next week, we are going to see a wellness doctor close to home who is interested in learning more about Gideon and his genetic disorder…not sure right now what that will look like, but we are excited that doctors are interested in knowing more about our little guy.

And finally, in December we will see his ophthalmologist and endocrinologist. I’m anxious to see the endocrinologist as many of our PBD kids suffer with adrenal insufficiency. I’ll  keep you posted as those appointments take place.

We feel extremely blessed with all this good news and we appreciate your prayers as we continue to navigate this crazy life with our Mighty Warrior.

Early on in our journey, I spent a season wallowing in self pity. It’s easy to feel sorry for yourself when you have a child with a disability. Heck, it’s easy even if you don’t!

A wise friend once told me that the remedy for self pity is to serve others; and when it’s possible, spend time serving as a family.

As always she’s right. Serving others is extremely powerful. Not only does it keep us from self pity & isolation, but it teaches us to give and to love others. Most importantly, it helps our eyes focus… so we can truly see that we are blessed despite our circumstances.

Yesterday we took our kids to serve for the Manna Project. Laynie and her daddy arrived on time… Gideon and I were late, since he decided to take an early nap. Kevin and Laynie served by measuring out & boxing up rice, beans and soy. Laynie was eventually moved (with the other little kids) to coloring and decorating the boxes. I helped keep the kids on task and Gideon….well, Gideon was unable to help physically. But he brought smiles to all the volunteers….so I would think that’s a huge help!!

The big take away was that we spent two hours as a family working towards a common goal that would bless others. It led to some amazing conversations with Laynie. It gave me fresh eyes to see my son and how fortunate we really are.

It was through our mission to bless others that we realized… we are the blessed. In 2 hours, all campuses combined packaged more than 200,000 meals. While that’s wonderful news, I can’t help but think, what if we served for just one more hour? What if we did this every weekend?

Maybe I’m becoming an idealist, but how would our world (and our children) be changed if we spent more time serving others with our families, instead of just serving our families?

I love capturing the perfect family photo. You know, the one where everybody is looking at the camera and smiling. But if we are honest, attaining a photo like this requires a tedious process that usually involves elevated blood pressure, bribery and the inevitable threats.

And all for what?! So we can post it to Facebook as if to say to the world, “Look at us! We have the perfect family and the perfect life!” Well let me go ahead and tell you that our family is not perfect, nor do we have it all together.

To get the photo above, it takes a grueling process- one that makes me more and more aware that I have a long way to go as a parent… heck, as a person. Anytime I need a lesson in patience or grace, we can just go take family photos.

So here is reality… For every great photo you see of us, there are 50 others that are pure crap. I’m sad to say, those other crappy photos show just how far I have to go as a mom.

So I wrote a poem to express how this process to picture perfect goes down for us…every…freaking…time.

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To get the perfect picture, I think we would all agree,

That everyone needs to smile by the end of “1-2-3”

But rarely does that happen, on the very first shot,

Because someone’s never ready, this happens quite a lot.

Sometimes you get a good one, and it really blesses your heart.

But you can’t get over the fact, that you’re standing so far apart!

And as you move in close, the smiling can never quit.

Unless your youngest child is about to throw a fit.

When he’s found your hair it’s over, the next few photos will be crap.

And you begin to rethink your idea, that he could skip his afternoon nap.

“Keep smiling” you tell everyone, hoping the chaos will soon cease.

Dad begins to laugh, because mom’s blood pressure has increased.

Finally everyone is positioned, but no one is looking except for mom.

She’s the only one stressing about this, which looking back, seems quite dumb.

But we have to get a good one and so grandma keeps on clicking.

And then the oldest turns around, to express her clock is ticking.

“Someone might get the pumpkin I want!” with attitude she screams,

“First we do photos, then we’ll find the pumpkin of  your dreams.”

“But I want to go look now!! Oh mom I just can’t wait.”

“If you turn around & smile, we’ll stop for ice cream cake!”

And when the groans begin, mamma is done being sweet.

“Turn your sassy self around, or you’ll never get another treat!”

With everyone facing forward, finally there’s hope of a great picture.

But dad’s arms are tired, trying to keep brother from kicking sister.

Between the youngest & the oldest, you’ve captured restlessness & sass

And if you weren’t at a church, you’d certainly whip the oldest’s…ugh, bottom.

And just when you think you have had more than you can take,

A sweet moment happens, so a smile you quickly fake.

But the oldest isn’t on board, so the threats again are thrown out.

So she fakes it with the best of them, isn’t that what this is all about?

We need the perfect picture to hang on our perfect wall.

So everyone on social media can think we have it all.

And that’s why I’ve posted this progression, so you can see we’re all the same.

We all have struggles and issues, trying to keep that perfect image is to blame.

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I hope that you can relate and I hope this made you smile. If it did, please share it with your friends and family. If you have a funny family photo that shows your imperfections, please post it in the comments below so we can all smile together.

Happy Fall from our imperfect family to yours!