Monday, November 21, 2016

He's Doing It!! Rhett is Walking!

Wow! I can't believe I'm writing this today, Rhett is WALKING!!

See the video of him walk here

For those of you who don't know the whole story, I want to catch you up so you know how amazing this milestone is for our family and our sweet baby boy.

Rhett attempted to come about 4 to 5 weeks before he was born. My wife had been hospitalized multiple times for dehydration and numerous kidney issues and Rhett decided that March was his month! Thankfully Mary's doctor was able to keep him incubating a bit longer.

Fast forward to Rhett being 4 months old. He is sleeping only a few hours a night, he won't nurse well and transistioning him to formula seemed to be the best way to get him additional nutrients. On top of this, Rhett would scream in his car seat for the entire amount of time we were in a vehicle. This made for a disaster. Then, we began noticing he was not hitting some of the milestones he should be. Having our son Levi, 13 months older than Rhett, milestones were fresh on our mind and Rhett wasn't anywhere close to Levi's timeline.

Everyone we met kept saying "don't compare your children, he will get there". But by 6 months we knew that Rhett needed help. Through a confidential conversation with our doctor she was able to get us help. Also, due to the community volunteering Mary and I participated in we knew a wonderful therapist that could help us! First we were referred to a neurologist, a specialist, then a program through the state that would allow Penny to begin Occupational Therapy with Rhett. All the testing pointed to apraxia (similar to a stroke patient, your mind knows how to do something but the wires that send the signals are no longer viable or haven't redeveloped - in Rhett's case, they thought the wires never connected). After multiple tests they determined a Genetics Test would be the most accurate chance of helping Rhett.

The test itself was simple but the waiting game for the results became torture. On top of the wait, our insurance decided not to pay the claim and I was called by the testing facility to say they were going to stop waiting for the insurance to pay and process Rhett's DNA because of how important it was to diagnose him, they also asked if I would sign appropriate documentation for them to fight legally on my behalf for the insurance to pay the claim. (At the end of October they finally paid the claim).

Fast forward another month and half, by now our Occupational Therapist has begun to come see Rhett at home weekly and Rhett has gotten tubes in his ears to help keep his multiple infections away. And then!! Rhett's Genetics Test results came back.. Rhett is missing parts of Chromosome 17 also known as Chromosome Deletion. Wow. What does this mean? Well.. no answers. There isn't sufficient documentation on this particular deletion. We do know that duplications or mutations of these pieces of DNA cause shortness of a person, stubby fingers, a small not fully functional mouth and a few other things - all of which Rhett doesn't display, with the exception of his mouth muscles not being fully functioning but that goes along with all his other muscle movements.

Again, fast forward. Medical bills are stacking up, company premiums increase significantly, insurance is refusing to cover Rhett's therapy. This is taking a serious toll on my relationship with my wife and other children. I stress out constantly. I cry because I'm helpless with my sons condition. I begin doubting whether he will walk or crawl. I also begin being influenced by friends and family members to begin making accommodations to our home to support a wheelchair and other various ridiculous things before even knowing what life would be like for Rhett.

And finally, we hit rock bottom. We weren't happy as a family anymore. We couldn't function the way we should. We let too many people be involved in personal decisions regarding the wellbeing of our life. It was the end of the line for our family.. Then, we turned it all over to God. And I promise you, on that Tuesday life began to change. We began to change.

We were blessed with a new insurance company that was willing to help all of our children, Rhett began to crawl, we stopped taking our love for each other for granted, the kids began to have a normal routine again. And we began to smile and laugh again. And that was it. We could've given up our lives together and who would that of helped? Instead we asked for help to change ourselves and we haven't looked back.

Fast forward to yesterday. Many therapies, appointments, 2 new dogs, our oldest has moved on to kindergarten and our middle son is trying to potty train.. and Rhett lets go of the couch and walks across the room on his own. No help. No encouragement.

Appreciate the milestones. And don't be afraid to fight for what you believe is best for your family. And always turn your troubles over to God.

Click Here to see our latest VLOG here with tons of footage of our weekend fun with Rhett walking!
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