God still answers our prayers, we don't run out of miracles!

You know, with Braden, we have received over 9 miracles in his lifetime. So I have to admit there are times I pray for him and wonder if we have used all our "favors" up in heaven. We have already been so blessed, sometimes I feel like I have to prepare myself for the "no" if a prayer isn't answered. But let me assure you with certainty, God is STILL in the miracle business, and he STILL answers prayers.

A few weeks ago, we changed out his G-tube, and there was an "incident". Not ALL of the pieces of the g-tube came out of his body. PANIC sets in, as we were leaving for a BIG trip later that week to go home to KS to see family, and introduce them to the newest member of the family, Laila Grace. How in the world could this thing come out of his body and leave pieces behind? Will we have to go to the hospital tonight? Will he have to have a surgery to remove the parts left behind? Will we have to postpone this well-organized and orchestrated trip with other out of town family to meet up? WE DON'T NEED THIS RIGHT NOW, was the first thought. After a moment to catch my breath, I texted some groups of our prayer warriors. I asked them to ask God for his favor, and let this event be minimized for Braden. He has been through so much, the thought of us possibly causing an issue for him was nauseating. So instead, we prayed.

Here is what the g-tube looks like new, and what Braden's looked like:


I called the on-call surgeon to ask what we should do. They concurred that we wait a few days to see if it passes, if not, come in to see the surgeon. I cried myself to sleep that night in prayer. Begging God to just make it all go away.

The "pieces" didn't pass over the weekend. So we saw the surgeon and had an X-ray done. Well, our prayer warriors must have been interceding extra hard for Braden, because we got another mini miracle - the X-ray showed NO FOREIGN OBJECTS in his stomach or intestines!! While it is possible that pieces of his tube were degenerating, because we often see that... it is highly unlikely that it was so disintegrated that it broke clean off and passed, or was just "sitting" where it goes without popping out! Our God is still in the miracle business people, and I am so grateful to have people willing to pray for our little warrior in our moments of crisis.

So we were able to take Braden and Laila home to see family, so our family could also meet Laila for the first time. It was such a time of celebration and joy. If I am being honest, I was worried about how some family may react to Laila's mixed racial heritage, because my generation is really the first to "diversify" our children - having children and marrying partners of a different race. But can I tell you?? Babies have a way of neutralizing any potential cultural divides, and our sweet baby Laila meets everyone she meets with a smile that will melt your heart. I saw members of my family (who are largely unemotional) cry tears of joy, upon meeting this precious child.

Here are several pics from our trip!!

Wilson Grandchildren

Halloween


Cousin Knox (asked to walk Laila to school with him!!), Nana and Grandpa


Great Aunt Karen, Cousins Patsy (mom) & Harley (daughter), and my friend Nicole (from college)


Betschart Cousins


Cousin Paxton, Gram, Group shot: Kodi, aunt Shala, Laila & cousin Huck, Papa Tom


Aunt Jenny, cousin Peyton, cousin Gentry playing maracas for Laila,


Great Uncle Dale, Great Aunt Patty, Great Aunt Marilyn, Great Aunt Brenda


Vogel Family: Great Grannie Vogel, Great aunts Tricia & Shelley, and a 4 generation pic (Aunt Shelley sits in for my deceased father)


3 generations of girls


Adorned in our KC Royals Championship gear - they won while we were in state, so we got our best selection of gear there!


Orphan Sunday in our BEE-LIEVE shirts celebrating our little would-be orphan!!


Our friend Anne from Norman, OK... friends Victoria & Mark and their newly adopted foster children from Dallas, and my little co-pilot taking a break on our drive home.


I have accepted that Brad and I weren't chosen to live a "charmed" life, where we get married and have babies (who would be potential Olympians, of course), and live a very picture book life. This was not the path we have been given. We have been given an incredibly difficult and challenging life to raise a terminally-ill, medically fragile child whose time with us is unknown yet limited and requires 24/7 care... we don't get to take "vacation" or have many "date nights" or get to take a long weekend away just the two of us. We faced miscarriage and infertility. We had our own plan of adoption, but we were given an opportunity to embrace a situation that did not fit our initial criteria... and saying YES to this situation has been one of the best decisions of our lives. We were not called to ordinary. We were called to EXTRAORDINARY. I say that with the most humble bent possible... I wouldn't have asked for any of this, but I hope we answer what we are called to be, to the best of our ability, and a FULL RELIANCE ON GOD (FROG) to get us through, because only in his strength will we survive!!! We thank you for your continued support on our journey and being a part of our village.

We became a family of FOUR

So I'm sorry it's taken time to get something posted here... there's just SO MUCH to tell, but so much has to stay private because of the nature of our semi-open adoption. But she is here!!! Yes, SHE!!! We met with a potential birth mom in May, and a few weeks later, our baby was here!!

Laila Grace Wilson was born June 13th. 6lb 1oz


I cannot tell you how much we love this little girl. She has completed our family (for now) in so many ways! A "real baby" experience, complete with colic and tummy troubles... but all the smiles and personality we can handle! We hope to share the full story a year from now publicly when everything should be finalized, but God had ordained SO MUCH of our journey and hers to us. She was so MEANT to be our baby, even if WE didn't know it. Her name was even pre-ordained by the Lord, and we are super in love with her. Attitude and all!! She is going to be a firecracker!!

Braden's beeps do not seem to bother Miss Laila much, and her crying doesn't seem to bother him much either. They spend a little time together every day, and seem to be adjusting. Braden has come to accept that this baby is here to stay.

So now we are a family of four, and it's taken a bit of time to adjust to new terms like "children", "kids", and "daughter". Even scheduling for two little ones is a new adventure of us too! But we so look forward to all the things that probably most parents take for granted... probably the things we look forward to the most, are 1) Hearing the words "dada" and "momma" for the first time as parents, 2) having your child say "I love you", 3) Smiles back at you, 4) and the ability to give us a hug. These are the milestones that we look forward to, the ones you may have overlooked... and honestly, might be the only ones that matter to us!!

Thank you for your support on this journey, and sending us your love and prayers along the way.

The Hospital, our Easter, and the medically complex child

We were recently admitted into the hospital, breaking a streak of over 2 years of remaining hospital free. Yes, we had an ER visit in there, but were released with a home plan. We made the tough choice to take Braden out ONLY for the Special Needs Easter Eggstravaganza & Expo, and that this year we would forgo his presence at an Easter service. Well, he was fighting a urinary tract infection, but we didn't see that as enough of a reason to keep him home. Yes, it was also only in the 50-degree temp range, but most activities would be inside. So we took him.

Two years ago I heard they had a balloon room, which we didn't know about until after the event. I was sad we didn't give him that experience. Last year, the balloons were popping frequently enough, I was afraid it would set off a seizure, so we didn't go. I was BOUND AND DETERMINED to make this balloon room a reality for Braden. Since I served on the committee to plan the event, I made sure we ordered punching balloons - stronger and less likely to pop than regular balloons. So we FINALLY get to take him, and well, he slept the whole time. I was disappointed after the 3 year build-up, that he didn't REALLY get to experience it the way I wanted him to.

Then we decided to get our bunny picture before the lines got long, and it was still sub-60 degrees outside. So we rushed, and got it done. He was sleeping, again.

We got him back inside for the one thing we ALWAYS do for him - a professional haircut. He was awake for a good part of this experience. Really? This would be one to sleep through and enjoy... but that's our Braden. And it took 3 people to cut his hair - too funny!


Then we let his nurse and therapist take him to some booths - he got his face painted, and started doing some crafts. But it was short-lived and his heart rate started dropping too low, and he was getting too cold. So after ONE HOUR at this event, Braden had to go home. This was the sum total of our FAMILY Easter experience. And then... by Sunday night and the wee hours of Monday morning, we were in the ER, before being admitted to the hospital with Braden. The ONLY thing they could figure out with him was a positive FLU test. So remember my little post about how the little things to your kid that can mean they don't feel well for a few days, can have more dire consequences for us?

I had posted and discussed at length on Facebook after this article, to support the thoughts and realities for us. Click here for the post: http://batonrouge.citymomsblog.com/your-kids-sniffles-are-my-kids-picu-stay/

This is one of those times. The UTI, paired with exposure to cold weather, and exposure to many germs in a crowd after ONE HOUR and minimal interaction meant the FLU put him in the hospital. And not only that, because he is complex, the doctors for days could not agree on why he had certain symptoms that ultimately could not be figured out nor explained.


I hope this offers parents whose children wore their adorable little outfits and misbehaved and got chocolate on them or popsicles at least take a moment to appreciate that they got to actually wear the outfits mom and dad bought, they got a family photo of some kind, and that Easter was spent together as a family... because none of that happened for us. I'm not sharing this because I'm upset or angry - just offering perspective. Please don't take those moments for granted, because medically complex families may never get to experience them - the cost is just too high.

So I wanted to share with you this post that I thought was extremely well-written about life as a parent of a medically complex child. If you have an extra 3-minutes, please read it. It offers tremendous insight as to what life is like for us.I recently read this post on another blog, and I thought about just how much it describes our life. I've tried to describe what it means to be the parent of a medically complex child, why we have to make overprotective choices, and why we never ever really get to "relax."

Link: http://themighty.com/2015/04/when-your-medically-complex-child-is-never-really-out-of-the-woods/

God bless you for keeping us in your prayers, offering notes of support and encouragement, bringing us meals, and just doing other things to help us out. We love you for that. We NEED you for that. Thank you for not waiting for us to ask you for help, and just doing something for us. It is hard to ask, or know WHO could help at times, so honestly, the JUST DOING is appreciated more than I could express. Telling us you are coming over with a meal and when can you be at our house or at the hospital - we just love you so much we could never express it with enough gratitude. Telling us you are picking up the mail, cutting the yard, coming to clean, do laundry or dishes... you are so appreciated. For those far away who send beautiful cards and notes of encouragement - you are such a valuable piece to our support team, and your emotional support is needed an appreciated. All these ways of showing us your love - they get far more mileage than the time you took to invest in that simple act of kindness - they are the memories and support we need in our weak moments. They are the vote of confidence we need to know that we CAN do this, even if we haven't slept in 2 straight weeks again.

For those of you NEW to our story, here are some posts that offer a snapshot of a day in our life:
http://baby-braden.blogspot.com/2013/03/a-day-in-our-life.html
And oh... the medical billing: http://baby-braden.blogspot.com/2009/10/walk-day-in-my-shoes.html
And the other stuff too to round out this PICTURE of our life: http://baby-braden.blogspot.com/2010/10/10-10-10-reflections.html


So Braden will turn 9 this month. Our little SUPERHERO will celebrate in BIG STYLE with friends and family. We can't wait to share the pictures!! Thank you GOD for giving us NINE years!!!!

Love to all,
Kodi, Brad & Braden

Celebrate Good Times - 24 month NEW anniversary!!

So as I write this, our miracle little warrior child is celebrating with his parents tonight. Today we have made it two years since our last hospital admission. We made hard choices to get here, but we made it. We don't get him out much. We don't take him out and even cancel therapy and doctor's appointments if it's below 50 degrees. We battle too many consequences to make it worth it. We must have had some extra prayer warriors working on our behalf when mommy got the flu and bronchitis, for Braden and daddy to miss the flu bug completely. WE MADE IT!!! For those new to our story, we really never went much more than 3 or 4 months in the past without an admission. Occasionally we would make 6 to 8 months without a visit. This two year anniversary is quite monumental.

I visited the hospital this week to bring some goodies and encouragement to another special needs momma who had to make some hard choices that included a feeding tube for her son, and a few other surgeries as well. It was AWESOME to walk by the residents and staff doing rounds, and not recognize a single soul! I was lucky to run into a few of our nurses from the PICU. I got some great big hugs and high-fives, and of course some sighs of relief that I was not there with Braden.

I often wonder about the meaning of our journey. One day I will ask God what it was all intended for, and I'll know our true purpose. But somedays I am blessed with little snippets of how our lives impact others.

Many people when they receive difficult news or a diagnosis can find it devastating, crushing, unbearable and completely overwhelming. They can find themselves drowning in a sea of information and uncertainty. I met one of these women several years ago when she came to our Bible study for moms of special needs children. At the time, we were studying Esther. By the end of the study, she was telling some of us how we had become the Esthers in her own life. At the time I'm not sure I really understood her full meaning.

In the hospital, as she introduced me to her son's nurse as "her Esther". She began to unfold the story of how overwhelmed and flooded with desperation she was when her son started receiving multiple diagnoses. She explained that in our Bible study, she just noticed how I seemed to handle much more complicated medical issues with my own child with a kind of grace, calm and peace that she was longing for. She said that is was simply my example of how I was living this life that encouraged her to make the decision to essentially pick herself up off the floor, and start handling her own life issues the same way.

She is living proof, like my own family, that it's not the circumstances that determine the life you live - it's how you handle and deal with those circumstances that determine the life you live. People are always watching, and I forget that. I'm grateful that God gives us these graces, because I certainly would never describe myself as calm or graceful... you know that's all the covering of Jesus!! Peaceful I'll take, because I rely on Him to get us through this difficult journey, and I feel like I have been given a peace about our life and the things we deal with. Negative things come at us constantly, it's the devil's way of trying to sneak in. Bad things in life never stop happening to us, but we can't let them drag us down. The same is true for everyone, it's simply LIFE. You just have to put your big girl panties on and deal with it. Every day. Every time. It's just going to keep coming anyway.

Choose positivity and hope my friends - life is so much sweeter. Thanks for keeping us all in your prayers, we so appreciate them!! Braden's birthday is next month... NINE!!!


(Pic of our little man - I found him like this one morning, legs crossed. What struck me as funny about this, is that his daddy used to wake up and sit in this position every morning until he would wake up.)

Kodi, Brad and Braden Wilson

Overdue update and a 22-month anniversary celebration

Lately I’ve been awestruck. The life that modern medicine has afforded us with Braden can be so overwhelming at times it takes my breath away. I recently find myself tucked away in his room – just watching his machine breathing for him. I see him sleeping more than 20 hours a day and I know that his body is tired and unable to handle normal functions. His machines seem to be doing more and more for him, and I marvel at how incredible this all is.

We are at home with our son, grateful for quiet time with him. Appreciative we are in our own home. Awestruck that his machines can keep his body going when he physically can’t, or his brain doesn’t tell the body to function automatically like ours does.

I barely want to take him out of his little bubble. We avoid sick people, in fact, I sometimes run away from them. We don’t get him out unless it is absolutely necessary… we cancelled therapy to avoid the germs this awful season, we don’t go out into the world so he can keep his temperature stable, and his secretions normal.

I don’t want to ever go back to the hospital. It’s a place where germs abound, and we see what evil can look like in this world. It’s a place where some children get better, and some never get to go back to their earthly home. It’s a place where we are always exhausted and low on sleep but high on emotions. I want to avoid all of that as long as possible. I want to avoid the inevitable, but I know we can’t escape it forever.

But for now, we will celebrate our 22 months of being hospital-free. We will celebrate the comfort and safety our home environment provides for Braden. I remain grateful to the men and women who helped qualify us for the help we desperately needed for Braden to get home nursing. I will continue to marvel while staring at the machines that help him live. I will thank God for every continued day we get to be with him. I will love him like I’ve never loved anyone else. And I will try not to complain when I’ve been up four weeks straight with him at night, because I still get to wipe off those chubby cheeks and run my fingers through that gorgeous curly hair for just a little while longer.