Monday, November 21, 2016

SATURDAY SOCCER | SUNDAY FUNDAY | WALKING BABY | VLOG ⚽️��

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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Wednesday, November 16, 2016

Noah, You are Destined for the Greatest of All Things!

My Dearest Noah,

I don't know how to begin to explain to you the hurt you feel in your heart and how that feeling fades with time. I know that you want to bring certain individuals back into our lives, that your heart longs for the relationship you have lost, and Son we know your hurt - but you must be protected from the things that will damage you as you grow older. 


You waited for me today. You waited too long for Daddy to arrive home so you could tell me about how sad you are. All you wanted was to see me all day, for me to make you feel better. Mommy just couldn't cut it today, you needed a Daddy. So here I am. You're sleeping, and I'm typing. Trying to put my thoughts to words so that one day you will know that I have tried to share with you all that I could to heal your heart but that I must protect you.


You're upset. You don't understand why an adult you Love would not choose you over their vice. And I get it. I know your hurt. I just hoped that some day people would grow up and not let history repeat itself. Your life is perfect Son. Your Momma and I will do our absolute best to show you the world and Love you more than you could ever imagine Loving another person. So as I type tonight, I think of the sound of your tears. Your sniffles. And the sound of your innocent heart breaking because you don't understand yet that some people are not cut out to be part of a family.

One day when you're older, you will see how sheltered you truly are. You can Love a person to the depths of your soul but that doesn't always mean they will choose your Love over their selfish ways. Remember the Love your mother, brothers and I share with you - this Love is Eternal, the kind of Love that not everyone is blessed with in life.

You're so young, handsome, brilliant, and you hold one of the few keys to Daddy's heart. The best advice I will give you is to remember who is true to you, and keep moving forward. Life is too short to let others hold you back, you are destined for the greatest of all things!

Daddy Loves you Noah.

SN: To all of you out there who forget how fragile children's hearts are, shame on you! I won't curse you, nor will I rag on your behavior - I will however remind you that we all will face judgement day.

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Tuesday, November 8, 2016

The devil is out to get each of you..

I write tonight from my couch with a sick baby in the arm opposite of the eye I can't see out of. I've spent most of today trying to recall small details of the events that have taken place over the last week.. I'm not much of a memory man, I have a fear of developing Alzheimer's early in life and forgetting my wife, children and friends names. So remembering small details takes me much longer than the average Joe, but God I need you to shake my memory!


I remember hearing stories over the last 20 years about how Jesus was surrounded by his closest friends and betrayed by someone he had so much love for. I can't help but to weep for Christ. I say all this to say, I don't know that you could really ever trust anyone. Or maybe it's that I've allowed too many people to let me down that I thought were standing in my corner. Just don't ever get comfortable thinking that a person, a group of people, an organization, or company will be for you what you are for them.. after all, we all live in sin and seek the pleasures of this world. The devil is out to get each of you.


For the sake of not wanting people to think I'm preaching, I just want to say - please know who you really are. So much of my life revolves around my wife, children, doctors visits and my job, and that is ok. That is normal. But take time to find yourself. A lesson I learned recently, "Don't worry about what could happen, wait to see what will happen before inducing stress on yourself." Although I don't agree with the whole idea of not having an action plan, I do believe there's a reason I learned this lesson and Lord let me share this message with others!


I haven't written in some time, Mary and I recently began a video blog (VLOG) on YouTube with new videos released on Mondays, Thursdays, and Saturday's. With our new commitment to YouTube as a partner there will be more information shared there often before it is shared here. Hopefully this new adventure will allow us many more opportunities to venture out beyond our current comfort level. I have committed through a promise to my Son Noah that I will finally write a series of children's books based on how imaginative he was as a toddler - this has been a goal of mine since he was young and I've allowed too much time to pass, it's time to focus on what will leave a positive, lasting impression on the community my children will grow up in.


I love you all, thank you for reading. Please share with others and comment your thoughts, I enjoy responding to everyone and your feedback.

Also, don't forget to subscribe to "it's an Ainsworth story" on YouTube. The easiest way is to go to our website which is currently being redirected to our YouTube homepage: http://JMAinsworth.com/