It’s been almost 2 years since we last visited an orthopedic specialist at Scottish Rite. We were originally referred shortly after Gideon was born because his toes were significantly curled in. (His big toe almost touched his littlest toe!) The doctor then didn’t seem too worried about his feet and suggested everything would straighten out once Gideon began to bear weight.

This past Wednesday we had a follow up appointment just to see how Gideon’s feet were progressing now that he’s starting to bear more weight during therapy. The doctor gave a great report and even suggested that Gideon doesn’t need his AFO’s (the braces that go in his shoes). That’s great news because Gideon hates them.

During the appointment we were able to ask about an economically friendly stander (aka: one that doesn’t cost thousands of dollars) for Gideon. We didn’t know this at the time, but the hospital has a loan program. And since they didn’t have the stander, they loaned us a type of walker for Gideon to try out. (See photo of above.)

We’ve used it a handful of times since Wednesday and unfortunately we will probably be taking it back sooner rather than later. Since Gideon has no vision there’s no real desire to make the walker go. But that’s not really our biggest concern.  Because Gideon has such poor muscle tone and almost no fat, we are concerned about skin breakdown (pressure sores); especially around the area where he has a sacral dimple.

The black piece you see in the photo is really meant to “catch” kids if their legs buckle when walking. Unfortunately, Gideon uses it more like a seat and there’s not much support for his skinny, little-old-man-like booty.

We were fortunate that the hospital also loaned us a tumble form chair and tray!!

We have a tumble form chair that ECI had loaned us, but it didn’t have the proper straps to hold Gideon in place nor did it have the tray. I’m most excited about these two items, because they provide lots of options for us. Trying to play with Gideon is often times difficult. I’m usually holding him and a toy, all while trying to get him to manipulate the toy. Now I can sit both down and work with Gideon on reaching for the toys on his tray. We’ve been loaned these items for 6-12 months, at which time we can return them or ask for a loan extension.

I’m hoping to meet with a rep from Freedom Designs before Christmas. I really want to get Gideon his wheelchair. I’ll keep you updated on how all that goes!!

We are very thankful for so many blessings as we head into the holiday season.

For my Laynie:

I don’t know all special needs siblings, but I do know quite a few.

And I think it goes without saying, special needs siblings are special too.

You have an unique perspective- that only suffering could bring.

You can turn the darkest season into the brightest, most beautiful Spring.

You are patient and so kind- you do more than you’re asked to do.

You take on way more responsibility than typical siblings have to.

Your needs often come second, and though it is truly unfair-

Rarely do you complain, and you always show Gideon you care.

With him your sense of normal is definitely somewhat skewed.

But in place of society’s normal, God’s giving you a new view.

But as mature as you are for a child, you don’t yet fully know the cost.

To have a brother like yours…someday you will understand loss.

And when that dreaded day comes, we will try to explain to you why…

Sometimes God allows children to be born sick and then to die.

We’ll never fully know why we were chosen for this story.

But I can promise you one thing, it will all be for God’s glory.

People will be changed because of what your brother is going through.

But how you show him compassion, will transform their hearts too.

You love him without condition and unknowingly, you light the way.

Your example is one we should follow each and every single day.

I thank God for you both and for the bond I can’t quite explain.

To be a special needs sibling, what joy in the midst of such pain.

Love always & forever,

Mom

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelation 21:4

This past Tuesday we attended an event called Baby’s Day Out. However, this was no ordinary Baby’s Day Out… It was for the visually impaired babies. As you can tell from the photo above, Gideon had an outstanding time. I would caption this picture with the phrase, “This is the greatest day eveeeeerrrrr!!!!”

And it really was a great day, especially for me…and not just because they served us Olive Garden (although I’m a HUGE fan of carbs). They had great speakers, great vendors, great resources, and most importantly GREAT volunteers who played with our kiddos so we could learn and fellowship without the constant interruptions. Which means for the first time since becoming a parent, I savored my food while enjoying the adult conversation at the table. (Lord knows I need more of that!)

In fact, I was so deep in the conversation that I forgot to take photos of all the toys and vendors. So in the pictures below they were already starting to wrap it all up.

One sweet family on their way out let Gideon try their son’s wheelchair/stroller (I’m not sure which it really is), and Gideon looked so cute in it!!

Hopefully we can get him fitted for his own wheelchair soon. (He’s outgrowing his car seat carrier and his current stroller doesn’t provide much support for his tiny, low tone frame.)

I’m so grateful for Region 10, ECI,  DARS and all the other three letter services out there. They do such a great job supporting us with resources for our special needs kids. Events like Baby’s Day Out for the Visually Impaired are wonderful because they provide fellowship & community (which is HUGE no matter what you’re going through).

I met some amazing moms and dads who have some phenomenal kiddos. These babies and their parents have been through so much. Many of the kids, like Gideon, had multiple disabilities. But besides the visual impairment, they all have one thing in common- they are all such happy babies. The room was filled with so many beautiful smiles, and so many hearts full of love & joy.

I’m convinced that these are the children that change our world. They inspire everyone they meet because they remind us all just how selfish we are as individuals & as a society. They teach us to be humble and grateful, and in doing so, we begin to find ourselves free from the chains of selfishness. And when that happens, our hearts are liberated to fulfill our calling in this world- to serve one another in love.

You, my brothers and sisters, were called to be free. But do not use your freedom to indulge the flesh; rather, serve one another humbly in love. Galatians 5:13

What an honor to be around such mighty life changers at Baby’s Day Out.