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.

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.

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. (:

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! :)

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.

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.

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!