Thursday, November 19, 2009

Another Challenge our Fighter Wins!

So Braden has been very healthy other than the allergies that are getting everyone around here these days. When I had to get up in the night at 3:30 Tuesday morning I was surprised he was upset and kicking around and not a happy camper. I suctioned him and settled him a few times until 4:30 am. At this time his sats were dropping, but I really wasn't getting much out in suctioning, so I figured he just needed his morning vest treatment which comes at 6 am.

Oxygen seemed to help, but after vest therapy he didn't seem too much better. And once we were on the road to daycare, I noticed he was doing those three little "recovery breaths" like after you've been crying which had me concerned at this point - because he still wasn't acting like he was getting sick. Braden has a few tell-tell signs like gunky eye stuff or purple eyelids when he's not feeling good. So we put him on oxygen when we arrived at daycare.

I had already called the doctor's office 5 times and left messages in 3 places at this point, so I headed to work. LaTacia calls me about a half hour later to say that Braden is acting like he's kind of gasping for breath. Not good. I tell her I am on my way. As I am getting over there I am of the mindset that I will be taking him straight to the ER... but I'd so much rather him see the pulmonologist, because the ER folks don't always have a great grasp on his respiratory issues, and they will probably have to call them for consult to come down anyways.

So I finally get the nurse at the pulmonologist on the phone who asks me some questions and suggests that I should just TRY to change the trach first, and if that doesn't help, bring him on in and we will get him to somebody. So I get to the daycare and Latacia helps me get Braden prepped for trach change. We change out the trach and he immediately coughs up some stuff that's been building up, and see that the trach we just pulled out had a mucous plug - YUCK!

Not just gross, but when I ran water through it to clean it out, I could tell there was only a TRICKLE of water and my poor baby had been trying to breathe through that tiny hole! No wonder he was gasping for air! I felt like a bad mom for not recognizing that this was the issue, but it was our FIRST plug. The signs weren't clear because I was able to suction some, I was able to go a little past the normal suction line - turns out it was probably bunching up in the line.

Crisis averted, no visit to the ER. Within two minutes Braden was breathing normally again. His strength and fighting spirit never cease to amaze me - he is one amazing kid! Thank you God for a solution that worked and for being with our boy while we worked through how to fix it - our little guy is resiliant!

The picture is from our photo session in the park a few weeks ago - he and Jackson were "taking five" while mommy and daddy posed for pictures. Our little guy wasn't super cooperative and got bit on the corner of his eyelid by a mosquito that swelled up pretty fast - so he wasn't much for photos that day.

This Thanksgiving be thankful for all the little things you take for granted every day - you might have to slow down to think about what those are. The crooked smile of your ornery child, the way your kid skips down the hallway, the way someone you know always greets you with a smile... be sure to tell those you are thankful for why you are thankful for them, for you never know when their time may come and you miss the chance to tell them how much you care.

Mommy was asked to write for Baton Rouge Parents Magazine, who will be putting out a Special Parents edition. The assignment was to report on daycare options for special needs children in Baton Rouge. If it's not heavily edited and chopped down, you will get to see all kinds of my personality come out. I'll be sure to post a link when it's available, I'm not sure when they plan to go to print. I think early December. Thanks for checking on us,

Kodi, Brad & Braden

Sunday, November 15, 2009

Lessons in the fog

Special thanks to Latacia and Annette for helping work the table at Mistletoe Market

As I drove Brad to the airport this morning to attend his grandfather's funeral, there was a blanket of thick fog on the ground. The fog was thick, making it difficult to see too far down the road. It was odd to me how strange things looked in the fog, and how unfamiliar things looked that are very familiar.

As we made our way through the fog, it struck me how very much like this fog was like the storms we pass through in life. We are so overwhelmed by our circumstances that we can't see the forest through the trees. All we can really deal with are the things that are right in front of us, because in the difficult times, even the most familiar can seem strange and uncomfortable. We wonder why we can't see farther down the road, and it's uncomfortable to think that we can't see what's coming up ahead.

1 Corinthians 4:12 tells us "Now it is required that those who have been given a trust must prove faithful." We have to trust that even though we don't understand in the storm why things are happening, that God has a plan for us, and that He will give us the tools to cope when we need them most.

So the Mistletoe Market this weekend proved to be much less fruitful than we hoped. I'm trusting that God has another plan and that I won't let this cloud of disappointment ruin what the road ahead might bring. The plan is now to put everything(baby bumble items and bottle art) on clearance. You can look up items on clearance at: and This process demonstrated just how scattered my creativity can take me, and it's allowed me to reorganize myself and focus on the things that will produce the most results. The sewing and the bottle art was therapeutic for me in ways, but probably not a long-term venture. The motivational magnets I think have long term legs, although surprisingly didn't do awesome at the show - but I think a lot of that had to do with my "eclectic" mix of items on the table. They don't take too much time like the others and will let me flex my creativity in other ways.

I want to thank EVERYONE who came by the booth and supported us at the show - we love you and we thank you for helping support Braden's medical fund. Each of you who has reached out in ANY way to participate and support one of our fundraisers is very important to us. We feel God loving us through our friends - and we are SO BLESSED with wonderful friends here in Baton Rouge who demonstrate their love and support. Our faith is tested constantly by raising a terminally ill child, and we wouldn't be as strong without your supporting arms wrapped around us.

I've recently been asked to write for a Special Parents magazine, and hope to use my voice there to advocate for change for special needs families through the media! Also Brad and I are getting more involved with the local Epilepsy Foundation of Louisiana and our contacts and skills can be put to use there to help a practically entirely volunteer organization get a little more organized in the marketing and event areas.

So I guess I'm busy doing Spring Cleaning in November, but it does feel good. It will let me focus on things that might be opportunities to REALLY make a difference. I'm thankful for the creative outlets I've explored for the last year, and thankful that I have NEW avenues to explore that better fit my talents. I'm sure Brad will be thankful that the "clutter" will be lightened up some, and I hope Braden will appreciate the extra snuggle time. I'm glad God gave me an outlet for everything and has now lead me down a new path for my creativity... I'm trying to let Him lead me down a path that I can't quite see the whole picture for, but I'm hoping the fog will eventually clear, and I can appreciate where things are going. For now, I will try to appreciate the things I can see that are right in front of me.

Prayers and blessings to our family who will bury Grandpa James this week without Braden and I - a short trip is just too risky for him. We hope they know how much we want to be there and know we are loving them from afar. Travel safe Daddy... we will see you soon.

Braden, Kodi (& Brad)

Wednesday, November 11, 2009

Rest in Peace - Maj. James C. Patee

Braden, Daddy, and Grandpa Patee

Brad's grandfather, Major James C. Patee of the US Army passed away early this morning. He was a man of strength, courage, character who loved his family and showed his grand and great-grandchildren love, support, and kindness. It's entirely fitting that our family hero would pass away on this Veteran's Day, as I can't think of a more fitting way for us to remember him. Brad will probably have to travel the long distance and short time frame alone, as it would be too hard on Braden to do an up and back in the car for over 34 hours... but we will be going with him in spirit.

Mommy will be running a table at Mistletoe Market (holiday shopping extravaganza) to raise funds for Braden's Medical expenses. The show is this saturday at the Sheraton Atrium from 8a-5p. We hope to sell out of all Baby Bumble Boutique items (blankets, burp cloths, valances) , all the items in the bottle art section (, and the golf head covers. Additionally, the very popular motivational magnets will be offered at the show on special ( but these I can ship to anyone interested in affordable teacher gifts, friendship gifts, etc. SHOW SPECIAL is 1 for $8, 2 for $15, 3 for $21, 4 for $25 or 5 for $30 - plus $7 shipping for every 5 shipped.

We tried a re-shoot this weekend on the family photos - we will see if anything came out - it's all about getting our "particular" little man relaxed and happy to get good shots. Mommy and daddy can fly through about 30 shots in no time, it's getting the prince while he's cooperating that's making it tough!

We will post after the show to let you know how we did - pray that we sell out of everything in stock and only have special orders to fill after the show!!

Thanks in advance for the kind thoughts and prayers for the family, as we say good-bye to our beloved family member who will now be watching over our own "little soldier".

Braden, Brad & Kodi

Sunday, November 01, 2009

Fundraising Update & Photo Shoot

Braden was selected to be photographed for the LA Faces of Epilepsy calendar, so when orders can be made, we will post the information on here for you to order one to support local families with epilepsy. Today he met some new friends... and made a new little girlfriend who is also 3, suffers from epilepsy, and puts a team in for the walk too... our new little friend Addie Claire! She was so precious to Braden... she was sharing acorns with him that he would hold, and she would talk to him and Braden was talking up a storm to her getting her attention! She would blow him kisses and say, "I like him" and "He likes me"... too cute!

I took a few of Daddy and Braden too here.

So the posts have slowed because we have so much going on. Braden is doing great right now health-wise, but Brad's grandfather has not been given much time, and Kodi's bff from college - Nicole - her father passed unexpectedly so a road trip to be with the family has kept us pretty busy.

We are getting ready to enter a craft show called Mistletoe Market at the Sheraton Atrium Nov. 14th to raise money for Braden's Medical Fund. We will be selling baby blankets, burp cloths, 12 months scripture magnets, bottle art, and golf head covers! Our goal is to sell out of everything and only have some custom orders to fill after the show.

The soup & dessert fundraiser is going well! We must send a special thank-you to Norwood Baptist Church in Norwood, LA... a friend from LSU goes to church there and Braden has been on their prayer list for years. Our wonderful friend Mandy and her church did a spaghetti dinner fundraiser for Braden and sent us a check!! THANK YOU for continuing to pray for us, and for going beyond prayers to take action to help our sweet boy!!

More thank you's to friend Stacie Coles for getting the word our about our fundraiser... her friends and family at Parkview Baptist Church's "Sunshine Class" and Tuesday Morning bible study have taken collections for Braden, and we appreciate it so much! Thanks for your prayers and love!

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