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.

Click Here to See "It's an Ainsworth Story" The VLOG

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/


Monday, October 17, 2016

You'll be there.

Some of the most comforting lyrics I've ever heard begin with "Hope is an anchor, and Love is a ship. Time is the ocean, Life is a trip." The first time I remember hearing it, King George sang it one night years ago as I traveled alone from some small country town in East Texas to a smaller country town in Central Mississippi. And tonight I sang it to one of my boys at bedtime. I've been singing it a lot lately, because I miss you.


I never held you. I don't even know your name. In my heart I know you. I close my eyes and I see you. Or maybe I feel you. I wanted you so much but God needed you. The more time goes by, the more I miss you. As the anniversaries of the day we said goodbye to you happen over and over month  after month I just can't stop the feeling of wanting you. I cry thinking about you.

I never understood what a person felt with the death of an unborn child until we didn't have you. Many people believe a father doesn't have an emotion regarding miscarriage but I'm here saying there isn't a moment that goes by that I don't think about you sweet baby, a moment that I don't miss you or want you with us. And I don't have all the words to explain the feelings I feel but there are feelings there, a loneliness in my heart.


But as life does, we continue on. I keep on singing this sweet song to your brothers waiting for the day that I meet you. And when that time finally comes, it will be worth all the price I've paid just to be with you.

"I know that I want to go where the streets are gold cause you'll be there."

Monday, October 3, 2016

Could we please stop using the word "retarded"?

I often find myself the victim of my own mouth. I've never been afraid to stand up for what is right nor have I ever been afraid to speak on behalf of those who are afraid of reprimand for their opinions.. With that being said, I always tend to look at each situation that presents itself and over analyze, overthink, and often take the delivery of what is said out of context. In saying all this, could we all please agree that it is time to stop using the word "retarded"?

I am upset so don't shoot me for expressing my opinion but it is time to grow up and clean up our language. I admit in the past I've used the word in the wrong context but if I've learned anything in the last 17 months it's that the word "retarded" hurts. Period. I cringe every time someone uses that word in my presence. It is downright rude and disrespectful, regardless of what you're trying to say. It is hurtful, careless, and you may not even know you're doing it.

Until you're faced with your own battles regarding disabilities and adversity you won't know how deep words cut a person. I remember that age old saying "sticks and stones may break my bones but words will never hurt me".. This is a lie. And I pray that none of you will ever face a battle of being disabled, having a disabled child, or that your family won't face adversity. Life is too precious.


"Retard", "Retarded", or any like word in your vocabulary hopefully will leave your vocabulary after reading this letter. It is my sincerest prayer that we all begin to speak with a diverse tongue and we become mindful of how much pain our friends and family may cause without knowing by having a loose mouth.

Monday, September 26, 2016

an open letter to Levi Jackson

My Dearest Levi,

You are by far the most adventurous of my children. And by now I shouldn't be surprised by any of your actions. But I am..


I wake up at night sometimes and my first instinct is to make sure you're still sleeping. I don't know why I worry about you waking like I do, but there you are snoring.. Loudly. And after checking in on you I make my way across the house to your brother Noah's room then end in brother Rhett's room. But Always, I always start with you. And its because out of all of my children you have always been the bravest. The most willing to wander off. Sometimes I dream of finding you swinging on the play set in the dark, other days I dream of finding you and your dogs sleeping on the porch.. I have no knowledge why I worry like I do.


You are the middle child. And as such, you play the part well. The thing about Levi, you have a way with people. Not just Mommy and Daddy. But with everyone. Everyone loves them some Levi. Mommy says "your sour, then you're sweet." You're the kind of boy to punch someone in the chest then kiss the hurt away. That seems to be your way.


Of course I wouldn't change you for the world. You're perfect in your own way. After all, you're the only child we have that knows how to work an electric razor. You're also the only child we have that is interested in doing chores for fun, the only boy who enjoys watching Mommy paint without yourself attempting to join in. You're just you.


You're growing too fast. Right in the middle. Some days you crawl around with Rhett like a baby and other days you're trying to chase Noah onto the school bus like a grown boy. What an awesome place to be, fitting into the puzzle as the perfect piece.


I love you son. Always be sweet and kind. And slow down. You're growing up too fast. Heck, you already are memorizing song lyrics. Just like Daddy.

Love you more, Daddy.

Tuesday, September 20, 2016

he bids me go; thru the voice of woe - his voice to me is calling..

Years ago in a far away place I developed a burning desire to help people. At the time, I was too young to fully accept the responsibility I had tasked myself with and I've spent years attempting to "get it right". After today, I can't say that I'm any closer to completing the task but I will say I'm truly honored to be writing to each of you.

Today we laid our grandmother, Carolin, to rest at the age of 67. Sixty-Seven years seems like many years when you're young, but to most of us now - we are either halfway there or more than halfway there. Now I know what you're thinking, we were lucky to have had a grandparent into our adult life and you're right - I couldn't agree more.. but. The pain hurts more the longer you have with them, or at least that's the way I feel. And 67 doesn't seem so far away now.

Much has happened in the last week and it's shaping up to be a busy week ahead. We lost two amazing people within hours of each other and next week we celebrate the union of a sister and soon to be brother. The clock never slows down, this I know. But for just a moment, in the blur of the last three days, the clock has seemed to stand still as we've spent unforgettable moments with family and extended family. For this I'm thankful. In the time of the most sorrow we have been able to rekindle friendships and embrace family we often don't see.

Life passes before our eyes ever so quickly. Embrace the now. Do not put off for tomorrow what can be done today - you may never get it done. Call your mother, father, grandfather, grandmother, child, aunt, uncle, cousin or long lost friend and tell them you love them. This is my challenge to you.

"And he walks with me, and he talks with me. He tells me I am his own. And the joy we share, as we tarry there, none other has ever known." #314 In The Garden


Rest in Peace Together Uncle Poochie and GiGi Carol, we will join you soon.

Thursday, September 15, 2016

It was the spring of hope, it was the winter of despair..

It is with a heavy heart and tear filled eyes I write today from the hospice facility at  my wife's grandmothers bedside. My heart hurts for our family. It has been along time coming, expecting the call that things have taken a turn for the worse but the moment the call comes, you're still not prepared.

The first call of many to enlist our help came sometime two weeks ago or so. And, after a week of trying to provide the best in home care the family could, Monday morning came around to Mary, Mary's mother and I attempting to pick GiGi up off the floor for what we decided would be the very last time. We tried, everyone tried, but ultimately the best decision was to have professional help. So here we are, multiple calls through the night getting updates on you from Mawmaw. And little Levi just came in to tell you he loves you. And my heart breaks all over again.



Today comes on top of last night, as all days do. We lost Uncle Poochie last night. We thought we were ready, but again, there's no such thing as ready. What a week our family is having. Everyone has been so strong, everyone has drawn closer together because of both of you, GiGi and Pooch. You both have always had an "ace in the hole". You've always both had your ways. We already miss you something terrible Poochie.
The days ahead look to be rough for everyone, thank God you're finally home Sir. The pain is gone; you've been set free. And soon, sooner than any of us had wanted, you will be home too Grandma.
Please pray for all of our family. Every one of us need prayers, thoughts, and well wishes. I know we we will see you again soon. Both of you. But for now, we sit. We mourn. We watch. And we thank God for the things you've taught us. The life you have given. And the love you have shared.

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair…" Charles Dickens

Tuesday, September 6, 2016

Oh no.. The white sofa again!

Have you ever put together a 100 piece puzzle? Sure you have. How about a 500 piece puzzle? Maybe, maybe not. None the less, you have a method in which to piece together the picture. Some of us put the border or barrier pieces together first. Others, put together groups of shapes/people/pictures until the whole puzzle goes together. There is one constant though, you have all the pieces. Now imagine putting together a puzzle with missing pieces.. Who wins?

Life is a constant uphill battle for most. We wake up each day, put both feet on the ground, and put our pants on one leg at a time. While I will admit that some of us only have one foot, or others step into a skirt, dress, or are clever and step into their pants two legs at a time, the vast majority of all of us follow the same routine of two feet on the ground and one leg at a time during our morning (or evening) schedule. I say all of this to tell you, we all begin each day with a plan.. A structured plan with goals we want to obtain by the time we return home and drift off to sleep, or a plan to have no plan (which is in fact a plan). And I will tell you all, our life is one daily plan after another that on the outside seems like a series of accomplished goals but I assure you it is not.

As humans the most basic thing we can do is admit we are prone to failure. Failure will do one of two things to each of us, make us better or send us on a long road of self doubt and uncontrolled bad decision making. Keep the faith, strive to do better each day. Life isn't a cake walk. Life certainly isn't a series of getting our way each day.

On a normal day, my wife and I set out to do a few of the basic things - make sure Noah is at school on time, that all the kids eat enough calories (what a feat), make it to work before the tardy buzzer rings, and so on. If we make it to bed at night without a child in bed with us, it is an overall success. But so much occurs between 6a and 11p that wears you down over time. How many times did Levi not make it to the loo today? Did Rhett actually nap? Is Noah on the naughty list at school or did he surprisingly bring home a good color? And of course, the list goes on and on. I say all of this to say, if I were to let all of the "wear and tear" things weigh me down I would be no good to my family or society. We are all going to face challenges. Things will go the way we intend every day for a week then that week will be followed with hit and miss days for the next two months. This is okay. This is normal.

I see many people through my work that believe they are the only ones who don't have their lives together. What an opportunity I have been given to share my story with them. To share the obstacles that we have overcome. Just remember, that the daily things that "wear and tear" on you do not define you. The funniest thing I hear people say is "You guys really have everything together, how do you do it?" HELLO.. The last time I checked, one of my children went #2 on the white sofa yesterday while we were cooking dinner then proceeded to invite his brother to play in it with him. I assure you all, my life is far from together. I take each day, one day at a time, and hope at the end of the day all of my kids go to bed with all their phalanges, appendages and hair - by the way, one of my children is going to bed without his hair today (once again proof that we don't have our things together, proof that we are human).

I say all of this to tell anyone who needs to hear it, life happens. We are all facing an uphill battle. The most important thing we can do for each other is to encourage one another to be better people; to reassure each other that life happens.

As far as updates go, Noah scored all good colors in school last week! Levi does not have any hair and is quite proud of his new look (he likes wearing a ball cap). Rhett is addicted to Daddy lately and tolerates Mommy but still refuses to eat much food or to spend much time alone. Mary and I had family in town this past weekend from Missouri and were lucky to spend a few hours visiting. We received happy news today that we are to be Uncle and Aunt again, our Niece Corbin will be blessed with a new sibling in 34 weeks or so. We also are looking forward to the marriage of Mary's sister Carolin to her long time beau Thomas, which reminds me I need to order Noah's tuxedo today..

Life is happening, the plans we all make get us through the day. Don't dwell on the negatives, look forward to the positives. If you pray, pray for my family. There are so many more unknowns out there for us, but we are fighting to make a difference.

Monday, August 29, 2016

an open letter to noah..

My Eldest Son,

You have the imagination I have only ever had in dreams.. To hear you tell a story, I might need to pull up a chair for an hour or two (and that's if you're being sparingly low on the details, plot, and characters).. You have a gift son. I hope you know how much your excitement and ability to change negatives to positives will make a difference in this scary world.


I found myself today looking back at the videos of you when it was just Mommy, Daddy and you. You're first uncoordinated steps, at our first home together, your smile and your baby voice. So much growing up has happened in these almost six years. Things have flown by too fast. Now here we are, you're a Kindergartener with two younger brothers and a dog that you seem to enjoy being mischievous with, ready to begin playing soccer, eager to read, write, and learn. Goodness, we will close our eyes, open them and you will have children of your own.



My son, there are many things I have taught you and things you've naturally inherited of mine - things I love to see and things that remind me that you're mine. Your smile, the need to be pressed and ironed, your overdramatic "injuries or illness", your laughter, your curiosity and your stubbornness.. It's going to keep you in trouble - try to not be as hard headed as I have been. Turn the other cheek, brush the chip off your shoulder, and above all - don't let your determination to be right ruin your ability to learn from others. 



I will say, I should've seen your attitude and arrogance coming (all I needed to do was look in the mirror) but when I look at you I still see my little baby with his chubby cheeks, thunder thighs, blonde hair and I hear your voice.. The voice that first spoke "Da Da".


It's amazing what you see when your eyes are closed. The places you will go, the people you will meet, the love you will share with others.. The knowledge you have and will absorb. Always be humble. Do not be heartless. Envelop others, learn, teach, and share your happiness. Close your eyes Noah. Listen to the world, hear the earth breathe, taste life, and do not give up.



I Love you with my all of my soul. Thank you for teaching me the things I don't know and for giving me the best title in the world, better than any other.. 

Daddy.

Saturday, July 30, 2016

an open letter to rhett..

It has been too long since I last wrote. I admit, there have been numerous times I've wanted to sit down and write, more times that you have asked me to. Things have been a constant change, an evolvement from one week to the next but here I am, as I knew I would one day be again, writing to you. Today however, I'm starting something different.. A series of open letters to my son that I'm willing to share with you.

Rhett,


My lucky #3; from the moment I learned of your heart beating, my life changed - your mothers life too. I couldn't have asked for anything as special as you to come along, Lord knows that we are blessed to have you. You smile, laugh, and your life to you is and will continue to be happy. When I look at you all I see is perfection, joy, and Love.


Being blessed with you has to us been the glue that keeps everything together, in line and a bond that our family centers around. We are so thankful to have you.


I will admit, relearning all the ways to teach you what you need to know is a challenge for Daddy. I spend most of my day wondering when you will walk, what you will sound like when you finally talk.. Nervous that you don't eat enough, because you're stubborn like me. I fight constantly with Doctors, insurance companies, specialists and with the different banks to make sure your Mother and I are providing the absolute best resources to help you develop - its a tedious, ongoing battle - but for you I will fight until the day I die to get you all the help you need.


Mommy isn't as concerned with the milestones as I am, of course she is with you all day every day and sees your progress so much closer than I do. Your therapist continues to be amazed at the leaps and bounds you make each time she sees you - and that is reassuring to me. I just want you to know how much I love you. And how scared I am, scared that we could miss something small that will one day be significant to you. Scared that I spend too much time doing all these things to grow you, that I might look back and miss you being our baby. To be honest, I sit and watch you - look at you, play with you, and I already miss you. I miss you because one day you will be grown, you will leave our family home, and be gone.


I love you son. Always remember how important you are to everyone you meet. Your life is significant, you will make a difference.

Daddy.

Tuesday, March 22, 2016

Where would we be without photographs?

Years ago I would lie awake for hours with a million things on my mind.. I don't do that anymore. I think partly because Mary is there, so I relax, and fall into a deep sleep rather quickly.. The other reason, my mind is like scrambled eggs - all day, every day. I find myself in interesting conversations with some of the most amazing people I've ever known, enjoying the conversing then suddenly I can't remember what we are talking about.. It would be something if it was isolated, but it has become multiple times daily. Maybe it's older age, maybe I'm losing it - for now I will attribute my brain to being well done scrambled eggs.


When I last left you all, we had traveled to Jackson for testing to happen on Rhett. We have received the results and thankfully the tests did not show any indications of Leukodystrophy(s). We are so thankful to know things have been "weeded" out. As of today our plans are to continue his weekly physical therapy and follow up with the neurologist in May. We are still waiting on the genetic test they first ran to come back. There has been some reluctance from the insurance company to pay for the test, so our 3 week window has now become almost 7 weeks of waiting to hear. We are optimistic and have faith all will come out in Rhett's favor. In the meantime, Rhett did receive tubes two weeks ago and has been in a much better mood!


This past weekend we celebrated Noah's 5th Birthday and Levi's 2nd Birthday.


The boys both had a very great time and they especially enjoyed the bouncy house - as did we all!


We have been on the run so much lately that I was able to take a week away from work to spend time with Mary and the boys, we didn't do much of anything all week - it was rather nice. I was sure hoping to catch up on sleep and I bet my wife hoped that as well. We did enjoy multiple evenings of working out at the gym together - she is way more dedicated than I ever could be. It has been nice to turn my work brain off for a moment. Today was my first day back to work and I'm pretty sure it was harder on Mary than it was on me, raising these boys doesn't come easy - I give her big kudos.


We also celebrated our niece Ryleigh's 2nd Birthday this past weekend as well (she is 3 weeks older than Levi). While there, Rhett stood up against a child's table and side stepped with much help from his Mawmaw - kind of a cool day for all of us. He also decided to get up on all fours and take one crawling step! All the while his Mommy was in bed sick at home. :( I'm sorry she had to missed out but thankful for his progress.


Many things are happening in our world. We're hoping to continue the positivity that we have been blessed with, and we will continue to search for answers for Rhett. Noah & Levi are continuing to be Noah & Levi - hopefully they are learning the routines we are modifying for them.

Thank you all for your continued prayers for our family, we are very grateful.

Sunday, March 6, 2016

Keep heirlooms away from floating shelves!

It never ceases to amaze me the number of things that happen in the world that are labeled as an "accident". I accidentally forgot to take out the trash, I accidentally wrecked the car, it was an accident.. I've said all of those things within the last little bit of time, so I'm sure my wife isn't the biggest fan of "it was an accident"! We hear this often, mainly from our children.. But things don't just happen by accident. There is always a cause, and what we label as the "accident" is the effect. To avoid rambling for hours on this topic, Mary and I learned tonight that things we label as heirlooms, things we wish to pass down to our boys in time, have a special place and on a shelf hanging from the wall adjacent the front door isn't the place for them. 

Moving right along, last week when I wrote we were waiting for Monday to roll around to hear from the Neurologist regarding Rhett. Between physical therapy and his afternoon ENT appointment the Neurologist called to say Rhett would need testing in the big city of Jackson, MS on Tuesday. He said many things, regarding what the testing would eliminate or what it could tell us and he also made sure we knew that traveling to Jackson, although far, would be the best place to go. He specifically said they would be checking Rhett's genetics for enzymes that assist with the nervous system - as Rhett can not independently control either of his legs well. After his call we saw his other doctor who has scheduled surgery to place tubes in Rhett's ears to alleviate his ongoing ear infection - poor guy can't catch a break!

Tuesday morning we headed out to Jackson, the about 3 hour drive took us about 4 to 4 1/2 hours to make, then the same amount of time on the way home; have I mentioned Rhett Solomon does not enjoy riding in the car? He will scream for hours if you let him. Once arrived in Jackson everything went very fast, I will say we were at the University for less than one hour. And he did what we all would do if we were held down while people poked us with needles, he was screaming. These tests have to be handled a special way and we should have the results Tuesday!


Rhett is very happy, every day something excites him and in turn makes us believe more and more that he will be okay. We have faith. And we believe that what is meant to be will be and we will adapt if necessary to the changes that may come. 

We all went to the Zoo on Wednesday, am I boring you yet? Noah turned 5 years old. It's hard for us to imagine Noah not being here but he definitely has been around for over 5 years now.. Kicking, screaming, kissing, loving and all the things Mama's boys do. He insisted upon beginning his Birthday with a trip to the Aquarium followed by the Zoo.. How convenient that his gift from us this year were season passes to both mentioned and the Insectarium.

He told me at the end of the day, "this is the best birthday ever". And I believe him!

The amazing thing about this week is all the positive things that have been happening. The children are doing and acting better than normal, except bedtime - still working on that, and our stress levels have dropped. Levi even stayed the night with his grandmother this week - allowing Daddy+Mommy to have an evening out while Rhett+Noah enjoyed an evening at home with their other grandmother. We even attended church for the third consecutive week in a row, that hasn't happened since before Levi was born!
I want to close by thanking each of you that have sent in positive messages to either of us. To each person who has prayed for my family and for Rhett. A special thank you to the people who have shared our story, called, came by work or home. We are so thankful for each and every one of you. Our blog last week was read by over 1000 people! Monday we take Rhett for ear surgery, Tuesday we should hear from the Neurologist regarding the most recent testing and Friday Rhett has his physical therapy - keep us in your prayers.


And because I'm still learning, I'm able to say this photos in the blog may not be in the correct place on the phone version, be patient with me as I continue to learn. (:


Sunday, February 28, 2016

Don't Buy White Furniture!

The best advice given to us that we've never followed and continue to resist, "don't buy white furniture." And by white furniture I assume everyone includes area rugs in this category. It seems the older our boys become, the more we think we are out of the phase of where this statement doesn't apply to us anymore. So as I sit here dressing Levi from his bath, I look at our beautiful white area rug that covers the wood floors of the bedroom and see the largest brown stain from this child removing his diaper early one morning on my watch as I attempted to catch a few extra zzz's.. Word to all of you new parents, take the advice - "Don't buy white furniture (or area rugs)."

I believe the last we left off on our journey, we were waiting a date for Rhett's MRI procedure.. That happened, two Friday's ago. In a series of the longest two days we traveled an hour each way both Thursday and Friday of that week to meet with the doctors, anesthesiologists and hospital staff. MRI's for babies and toddlers are difficult procedures, the child must be sedated then put to sleep and then the MRI can begin.. In total, Rhett had 4 MRI's. The experience was as wonderful as the experience could be, the staff was wonderful and treated us as family - something we desperately needed. The weekend happened and this past Tuesday we received a call from the Neurologist with the results...

Rhett has some abnormalities with the white matter in his brain. It was a very lengthy conversation, much of which neither of us have understood and we have refrained from Dr Google due to the worst possible scenario being the first thing we have read. The light in all of this, Rhett's Neurologist is on staff at UMC in Jackson, MS with access to a team of colleagues with much experience in Pediatrics. We should receive a call on Monday (leap day) with a plan of action, what comes next, and what we should do to make life work better for all of us. We had an emotional moment today, thankfully we were prayed over by new friends at a church we began attending recently - and while I don't push religion on anyone, I am very thankful that we were exactly where God wanted us to be today.. And I hope that everyone who has prayed for our family will continue to do so.

The following day we visited our Pediatrician for Rhett's regularly scheduled check in and his past due 6 month shots (no we intentionally didn't miss them, he just wasn't in the best of health to receive them until now). This trip included the news that Rhett is being referred to a ENT for tubes in both ears. We make the journey to see him tomorrow as well.


The best news of all with Rhett, he has begun sitting for periods at a time without support! While we can not walk away from him yet, it is the progress we have been needing to see to stay motivated. He also broke his first tooth today! And last night, he sat in a regular restaurant high chair unsupported! Much to be excited about. Physical therapy is definitely working with Rhett, he isn't thrilled during the actual therapy but is relatively happy with himself and his new abilities.


Today has continued to be a learning day with Noah. The more we believe he will learn that rules are rules, the more he continues to defy them. For him to be 5 years old this week coming, he sure acts about 30 with his smart mouth. None the less, he does have many moments of love and affection that aren't making up for his disrespect, but they come close to washing it all out. Any advice from parents of young boys (or girls) on how to out of the box discipline would be much appreciated. He did enjoy a fun day with his cousins today. He must be super tired, he didn't put up a fight when we put him to sleep tonight. Goodness he is growing fast. We are planning a trip to the Zoo in New Orleans for his birthday Wednesday, it's all he has talked about for as long as I can remember!


Levi also had his shots this week! And he continues to sleep in our bed at night. Much to my delight but not my wife's. HA HA. It seems every night one of the kids sneak into my bed, and I can handle it.. Cause Daddy's only have their boys for a little while, then you become "Dad's". Levi has also been testing the waters and boundaries. Thankfully its normally with food or toys.. He hasn't gotten too out of control in other aspects of his life.


I will finally say goodnight to everyone who is reading this blog. I honestly have had many of you reach out to me for updates and you have asked me to continue writing. I felt discouraged with putting hands to keyboard but I do want to make a record of where we stand each week and hope this will provide us the ability to look back on life in years to come when we have overcome all of our trials. (I will also say, Levi and his Mommy are behind me.. She is reading a children's book word for word and he is repeating each word after her, very sweet moment for them that I'm witnessing.)

I also hope each of you enjoy the photo's, as I've finally learned to insert them! :)

Monday, February 8, 2016

Life is hard. Unfair.

Life is hard. Unfair. It always seems the more we try to get ahead the further behind we become. I don't know  why good people always are given a more challenging hand than others but it sucks. Period.

I can't say that we have ever been more stressed out as a unit than my wife and I both are tonight.. Our dog died today. She has been with us for four years and the last 40 hours of so of our lives have been one constant hurt after another, praying, pleading to keep her alive. But as life happens we had to say goodbye. I know it doesn't seem like our world should be falling down around us over our dog passing away, but her death is the straw that is breaking the camels back.

I can't say that this week has been filled with any good news, numerous bad things are happening all around us and the devil has came at us in so many forms.
I will positively say Rhett's ear infections seem to be going away, he is much happier! Noah and Levi both have been handfuls for everyone. We can not seem to get Levi to bed at night, Noah has continued his defiance. And Mary + Jake continue to try to be positive as we continue into the unknown.

We are asking for prayers. Prayers for comfort in the loss of our Lexie. Prayers for Rhett's neurologist appointment on Thursday to bring positive results, that our baby isn't going to live a life of complexities. And prayers that we find structure and patience to continue to see the good in life and to accept that all things happening in our lives are to make us a stronger family.

I want to be a positive person, to bring positive news to my family and friends.. But I'm so sad. I'm selfish. I want my wife and kids to have their cake and eat it too. I want my child to not have a life filled with accommodations. I'd love to complain that my dog tracked mud through my dining room because the kids let her in the back door.  And I want to wake up knowing something (or someone) isn't always out to get us.

Monday, February 1, 2016

Somewhere around 1:00am our day began.. Not like an "oh I'm fully awake lets rule the world today" began, but a "why is my baby screaming uncontrollably" began.. Perhaps I need to back up for a quick moment.

Last night our day ended fighting first with Levi, then Levi + Noah, then Levi again to sleep. Man if I would've gotten the memo that by this point in the game I wouldn't be sleeping all night through I think I would've.. Actually probably not, sleep or no sleep, our world revolves around these boys.

Fast forward - by the 4th or maybe the 5th time Rhett woke up it was safe to say we needed to visit the doctor. And we both needed somewhere to sleep for at least one hour uninterrupted. So, I ran off to work like my usual Monday, into a mess of busyness that didn't leave me walking through the door until after 7:00pm, quite a bit of time without sleep! Mary was able to have Rhett seen at our pediatrician to discover that his ear infections have become worse, going into our third week and two antibiotics have failed! On top of all the confusion and things going on in his little world he can not defeat ear infections. The bright side for us, not for him, is he received a shot today to hopefully build him up and clear this out. Needless to say my wife had a long day of holding our crying baby.

So here we are, the end of the longest day either of us have had in some time, exhausted watching the boys play with each other - of course fighting their sleep. The good thing we have been blessed with recently is constant events, things you could say, that have kept our minds busy; work has been the most entertaining in months, Noah has transitioned to doing lessons at home (I believe he is able to read and identify all letters except his G and the number 7), our niece Emma was born Tuesday, Mary has begun a relationship with the gym again and a friend recently reopened his business(which allowed my wife and I an evening out of the house).

We are no closer to discovering the whats and whys of Rhett but we are thankful for his happiness, as it's very easy to see he is happy and is loved. His brothers are both adapting to our changes, hopefully one day they will all have a routine that is easily followed by all. We as a family have much to celebrate and as things change in our lives we will continue to share.

Monday, January 25, 2016

My son tried a candy cane today

I've contemplated for more than a month on the best way to communicate our journey as a family to all of our loved ones, extended family, and friends.. Here we go!

Rhett tried a candy cane today! It doesn't seem like much right? After two older children this should be a walk in the park for my wife and I...but it's not. This is a major milestone to us. Our youngest son hasn't had the major milestones many other parents have experienced (ourselves included with Noah and Levi). He doesn't sit, he doesn't pull up, or stand or crawl nor is he on path to walk.. Yet. So today we applaud the things others don't often remember, in the prayer that soon we will share his abilities with our family. As for when, we pray it will come daily. So many of you, our closest friends and family, have offered guidance and help as well as requested updates.. Today our updates haven't begun to come in, but I can confidently tell you Rhett loves candy canes as much as his older brothers!

For those of you who haven't learned, Rhett is a little behind where he should be. He has missed a few milestones and we have begun the journey as a family to help get him caught up. We have met with several individuals who know how to make his happen and soon we will meet with doctors, neurologists, and of course our beloved therapist Penny who is confident she will help our son. Through this we have made decisions to make life somewhat easier for all of our boys.

Not knowing how our schedule may change nor the consistency in which change will remain, our oldest son Noah will enjoy his last day in preschool on Friday.. Believe it or not, he is happy about being home with Levi and Rhett everyday and he has much work to do from a home school perspective! We met with his teacher today and we all are confident this decision will benefit our family.

Don't drink that water!! Levi is attempting to indulge himself on the bathtub water. He seems to go with the flow and is in his usual climb on everything, get into everything, where's my "Bubba" self.

While everyone is celebrating major milestones in life, join me in my excitement, my son tried a candy cane today!