Monday, July 21, 2014

Birthday goodies and the SuperMOM weariness

So I wanted to take time to thank those of you who gave Braden Amazon gift certificates but weren't quite sure what that would get him. Well I've included pictures of Braden's room and his new, amazing light projector. He loves it. Totally loves it. Here you can see why he would love it too.

We also got him a traveling gel memory foam bed for our trip back home. One of the places we stay he won't have a bed, so we wanted to be sure he would be comfortable!! And we were finally able to get more beads/filler for his bean bag chair that he adores, and enough to refill his foot rest - since he has grown over 1.5 inches in the past year, his feet are really starting to hang off the edge and nearly touch the floor.

Well, we are really digging deep into a few things that require a lot of work right now - so just pray for us.
1. We are in the middle of our home study for adoption, nearly finished with most of the pre-req paperwork and have embarked on the toughest part (seriously, harder than finding a match) - FUNDRAISING. When God called us to adoption, and still having a Braden situation (and the medical bills and fundraising required to keep up with everything insurance doesn't cover - and Obamacare has left us with more supplies and medicines this year that will no longer be covered) - we didn't exactly have another account of $40 - $50K sitting around just waiting to be spent. Yes, that is how much a domestic adoption costs. There is a possibility we could luck out and get one of this opportunities to only have to spend around $15K, but we just don't know our journey yet. But adoption today is done with a higher attention to the emotional stability and security that are more healthy for the birth mom and adopted child, long term.
2. Mommy is about to become a home health agency. I have a ton of things to get set up and paperwork to complete but soon we will have complete control over hiring, firing, evaluations and pay raises for our Personal Care Attendant workers.It will bring more work for us, but nothing we can't handle, and honestly will give us better control over communication between worker and employer. Pray for us!!
3. Seasonal sickness and sleeplessness are upon us. Many in Baton Rouge have been sick over the past 4 - 6 weeks with sinus and allergy flares that have debilitated them. It's been no different in our house, but yet different in severity and length. We have not slept in over 6 weeks now. Braden - poor thing has had stuff pouring out of his face every night. And while you and I would have an autonomic reaction telling our body to cough or breathe to clear our airway - he doesn't have that - so we have to clear it for him. Every night. Several times a night. So we definitely have lots of newborn practice, LOL. But after 6 weeks, it takes a toll on the parent too - leaving us susceptible to infection too. So mommy got sick with the sinus infection business too, but hopefully after a visit to the ENT we are on the mend… and my Superwoman cape will once again be restored. But special needs parenting is not for the weak, you will become weary from time to time. It's hard to take care of ourselves when we are busy caring for others - but I'm learning. And trying. I guess I'm never too old to learn. Sometimes the lessons have to come many times before we take it in:-)

Occasionally I get to see a post like this and it's a great pick-me-up and reminder that even at my weakest… I CAN DO THIS!! :-) (All things in Christ who strengthens me!!!)

Thanks for checking in on us!!
Kodi, Brad & Braden

Friday, April 25, 2014

EIGHT IS GREAT!!!! His WARRIOR DNA is winning!!!

Today we celebrate the birth of a true warrior, a fighting spirit and angel on earth - Braden.

Last March when we were in the hospital several doctors indicated to us that we needed to prepare ourselves, because his condition was declining and we were nearing "the end." (GULP). But God has other plans for our little miracle. God knows what his days are numbered - because medicine cannot fathom the powers of prayer and healing beyond their comprehension. But here we are, celebrating 8 beautiful years God has given us with our son.

Birthdays are always bittersweet - because it's cause for celebration, and at the same time pause for reflection as his time on earth we know will be running out. We might be one of the lucky ones who makes it into their teenage years, but our realistic expectations are different than that. No matter the time we get with him, another week, another year - IT WILL NEVER BE ENOUGH. His body has been working so hard for so long, eventually it will tire out and come to rest. BUT TODAY WE CELEBRATE!!

He's overcome so much. When he was about 2, before we were diagnosed with Leigh's - given his condition, the doctor's claimed even then he was a miracle. They said he shouldn't have been able to be conceived. He should have passed in utero. He should have been stillborn. And then there are those times in the hospital when he was very ill, that they just didn't think he would make it. And then the death sentence that is Leigh's Disease.

But my son is born of WARRIOR DNA. HIs grandmother Susan shouldn't have been born or made it past her complete blood transfusion as a newborn, and she's overcome multiple health scares and challenges that threatened her life. His aunt Shala has overcome multiple battles with cancer and other numerous scary health battles that threaten her life. And his mom - well, I may have had some health issues, but nothing life-threatening - those who know me would say I have an intimidating game face, that I am fiercely loyal, and that I will pick up my sword in their battles to fight with them and protect them. And so we will celebrate our WARRIOR DNA!!

Next weekend we will celebrate his birthday (belated) with a Ninja WARRIOR party! It is the spirit of my son that we will celebrate even though his body will only allow him to watch from the sidelines. I've posted some pictures below, just a quick snapshot of his journey and ours - thanks for all your support and prayers, because we could not do this alone. Thanks for checking in on us and loving us from near and far.

From our days in the NICU

First set of pics at 2months old

18 months


Age THREE epilepsy walk birthday party and Easter

AGE FOUR - epilepsy walk birthday party


AGE SIX - at his splash party

AGE SEVEN - from the glow party

Eight year birthday party pictures to be posted in MAY:-)

Thursday, March 20, 2014

365 Reasons to Celebrate

Today marks an anniversary we have never been able to celebrate before... 365 days without a hospital visit!! We came close a few times, but we have made it... FINALLY!

In case you are wondering why this is such a big deal, I'll remind you that he will be 8 years old next month. 8 years and had never gone a full year without an admit to the hospital. And I'll also jog your memory... that 4 or more doctors at that time were telling us our warrior was in a state of decline. It's one thing for one doctor to remind you of your official diagnosis and that your son is terminal, but it's quite another to have SEVERAL tell you that your son is nearing the end. See that post here:

But nobody puts my baby in a corner. God has had another plan. My child is a warrior, and he is determined to write his own story in the medical journals. We do have days where we wonder if his time is coming, you can't live like we do every day and not have those thoughts handily waiting in the dark corners of your mind, just lurking around the corner waiting for an opportunity to pop out at you. If you need perspective on what a typical day can look like for us, you can see our daily battle here:

So after 365 days of continuous relative health and freedom, I feel like dancing. I feel like I've had moments today I could have leaped off bridge or jumped over a train my adrenaline has kicked in so much in my excitement. I just want to shout it from the mountain tops.

We had to make tough decisions this past year to get here. No trip home to KS/MO for the holidays, keeping him out of daycare and in his home environment, and reducing his therapy schedule. Each of these was a difficult decision, but one that has paid off in dividends for our little man. We get the pleasure of enjoying him for a little longer, loving this little angel for just a little more, running my hands through his curly hair a few more hundred times, getting him to sing to me a few hundred times more. And we don't take a day of it for granted. You see, keeping him home has had it's own pay-offs too. Now that we are mostly staffed each day of the week, and several evenings a week - Braden will sing to me in less than 30 seconds now, and it used to take him a few minutes to warm up to me before he would sing. Now, he knows in a few short moments that I am not there to "mess with him", bathe him, change his clothes, do oral care, handle breathing treatments and cough assist - I am just there to be his mom and to love on him... AND I THINK HE KNOWS IT!!! One of his nurses lamented the other day that Braden wasn't singing to her that day, but as soon as I came in and started loving on him he started "talking" away... and she was jealous.

You know our perspective is a bit different than most of the planet. Most people think about what they WANT to accomplish in 365 days. I'll proudly wear the badge of my son who DIDN'T accomplish something. I'm glad we don't know any of the current ER staff at OLOL Children's Hospital, with the exception of a few. In this case, we are HAPPY to be unknown.

I am so proud to be the momma of this warrior. This year we will celebrate his 8th (gasp) birthday with a NINJA WARRIOR party. He is my hero, he continues to show his worth in this battle of life and we will cherish the moments we continue to be blessed with.
Judges 6:12 "The Lord is with you, mighty warrior".

Thanks for checking in on us. We love your support, your kind words and your continued prayers. They are all invaluable to us!!
You can view his facebook page for the most current updates here:
-The Wilson family

Thursday, January 02, 2014

Not your typical New Year's celebration

As you may know by now, nothing is ever "TYPICAL" at our house, not even New Year's.

This year, since we are not traveling at the holidays we have the luxury of having access to our caregivers during the holidays. So when we got invited to a New Year's party, even though we knew we likely couldn't stay until midnight, we got our nurse Erica to agree to stay until 10pm so we could enjoy a little bit of New Year's revelry with friends. We had a good time with friends old and new, but soon had to hit the road by 9:30 to get home in time to relieve the nurse who had church plans:-)

Just when we were starting to feel some regular kind of people "normal"... we came home to Braden, of course - who maybe had a different plan. The nurse said his g-tube feeding button was loose, so we decided to change it before going to bed, so we wouldn't have to do it at 6am the next morning. We waited until after midnight, to ensure his stomach was as empty as it could be, before making the swap.

With this new button of his, while it has many perks of being low-profile and extremely durable unlike our old Mickey buttons, the challenge with this one is that the removal process is not as easy. The underside is less flexible, and can make it a little more traumatic at the site to remove and replace. As a parent, you know how hard it is to watch your child go through pain, but knowing you are the one or reason for the pain being inflicted, it's really quite emotional for me. I get nervous, impatient, hot, nauseous and sickly, and I'm not even the one doing it or on the receiving end! I feel like I never really "get it together" with these. So daddy patiently took his time exchanging the button, meanwhile I exacerbated the issue by applying the lube to the new button too soon, causing it to begin disintegrating (like it's supposed to once you place it), but that also meant it was opening before it was inside Braden - really? Let's just make this stressful situation even worse!! I swear I almost lost it, but as usual daddy kept his cool and told me to chill out. In the next 2 minutes he had the old one out and the new one in...

Mommy does the "nursing" afterwards: clean up of the site, application of antibiotic ointment and gauze, administration of pain meds, and loving on him and rubbing his head and turning on his Oliver glow seahorse.

After all that, we were too amped up to go to sleep, so we watched more of the Living Dead marathon that was on. And eventually we settled in and got to sleep sometime before 2am.

Evidently, we were extremely exhausted from the overly emotional events of the evening, because mommy slept through 2 alarms that morning, and our house did not get up until 9am. We adjusted Braden's schedule for the day, and just enjoyed a day together as a family and stealing extra snuggle time with our guy.

I feel like we've just come out of an entire season of THANKSGIVING that began in October and may never end... we are just so grateful for our loving God who continues to bless us with more days to love on our little warrior. God has been faithful to us by bringing a job to mommy that's really all the exciting pieces of her last career, only without the incredible stresses that come with trying to increase newspaper revenues in a world that's gone digital. Even with all the changes going on, we are hoping for more changes for our family in 2014. We have been exploring the possibility of adoption, and feel we are called to move forward with this in 2014. Please realize, this is not a quick process in any sense, and we have many more decisions to make before we really go down this road... but we would appreciate your prayers as we try to discern the path God has meant for us, as we begin our journey to bring a new baby home to join our family. This too will be emotional and incredibly expensive, which means more fundraising, only this time for family expansion, not just to meet the medical needs Braden has outside of insurance coverage.

So as God would have it, just as I was starting to stress out about Braden's dwindling funds in his medical fund, and adding the pressure of fundraising for our adoption journey... a kind-hearted friend of the family contacted me out of the blue to see if he could do a fundraiser for Braden. THANK YOU JESUS and THANK YOU RYAN O'NEILL for being our angel right when we needed one! We cannot wait to see what you pull together and we look forward to supporting you from miles away by letting all of Braden's support team know about your fundraiser! My sweet friend Michelle Gros gave me a necklace for Christmas that sums up what I needed to grasp: "The Lord will fight for you; You need only to be still" - Exodus 14:14 (by the way, her family is selling these as a fundraiser as THEY are adopting this year too!! You can see all the options in their Etsy shop here:

We had to put hard laminate commercial flooring in his room to replace the carpet we just had cleaned 8 months ago. As the highest trafficked room in the house, many adult hours spent in the room with him, it was just necessary. It's actually been quite nice, as it makes moving his cart easier to move so we can get in the chair and snuggle with him!! Here are pics of mommy and Braden on Christmas Eve, and with Daddy New Year's Day.

So as we move into 2014 and you think about all the things you wish to accomplish, I sincerely hope you take the time to be thankful for all that God has provided and brought you through in 2013. We are prioritizing FAMILY in 2014. If this is also a goal of yours, but you are not sure if the things you are doing are making them a priority, I found myself asking a simple question to keep me focused... "Is what I am doing today making a difference on the things I want written on my tombstone?" The sentiments people share after I'm gone, most likely won't be "was a loyal employee, hard worker and always put in more hours than required, was a pretty good volleyball player"... I'd like to focus my time on the things I hope are there: Loyal Friend, Loving Wife, Doting Mother, A Heart to serve others, a faithful servant of the Lord. That's really all the direction any of us need in life, but it's our choice to live it instead of just hope at the end of our days our family shows us more grace than we deserve. I want to earn it while I'm still here.

So with that, from our family to yours, I hope you have an amazing 2014 - so go do something about it! Make a difference, be the change you want to see in the world and carpe diem!