Saturday, August 27, 2016

HOME

We made it home last night and crashed in our beds. Yesterday was such an emotional day for us. I think with confirming the news of what we feared was going on, just broke our hearts. More than anything I am sad for Gavin that he has to walk this long, bumpy road. But everytime I get down, he does something to make me smile. 

Today has been a GREAT day!! One of the precious moms on the 4th grade team periscoped the game this morning so Gavin could "coach" the team from the bed. He got so anxious that he had to move to a chair right up against the TV.
He was able to send comments and hearts to show love to the team. He wore his jersey and bit his nails with anticipation. Like I've said before he takes his role seriously. The thing that made me break down in tears was the helmets the boys wore today. One of the dads, Johnie and the moms, Sharolyn made "Gavin helmet stickers" for the game. 
It just makes me cry looking at it again! What amazing kids and parents. After the game Coach Steven brought over the winning game ball for Gavin. More tears! 
My sweet grandmother stayed with Gavin today so I could watch little man play. His team won 30-0 with Brody scoring twice! 
All of Gavins films will be overnighted to Kansas City on Monday. Hopefully we will hear from them next week on a plan. We will keep you all updated! 

Thank you again to everyone that has supported us this last week. Don't know how we could have done it with out you! And thanks to Traci for starting a meal train, what a HUGE blessing! 

"I have not stopped giving thanks for you, remembering you in my prayers." Ephesians 1:16

Friday, August 26, 2016

Heart Cath Update

Gavin got back to his room about an hour ago. He has to be on bed rest for 4 hours until we can get discharged. He was all smiles (as always) when they wheeled him in the room. 
So far Gavin hasn't vomitted (a first) post cath. We're thrilled! He called and ordered himself some chicken soup and he gobbled it up! 
This child is hilarious. He smiles through everything. He has the best attitude and tries to make light of everything. He asked for whip and nae nae again in the cath lab. He jokes with all the staff that come in and out of our room. Wish we could all be like him!! 

The cath confirmed what the echo revealed. Blood is pooling around the current coils and sneaking it's way back into the ventricle. When we were in Kansas City in January, the doctors told us they would have liked to put more coils in but his heart was getting angry when they tried to do so. So now we sit and wait while the doctors come up with a new plan. In the meantime, Gavin will have physical restrictions. 

Gavin is bummed that this is going on, but he tries not to focus to much on it! He got a special visitor once he got back to his room. Rufus the service dog! 
Rufus even left him a special friend to take home. :) 

After Rufus left, one of Gavins favorite NICU nurses, and first person to care for him at a few hours old, came by to give hugs. It's been our tradition for her to come by when we're admitted. Carmen, we are so proud of you and all the accomplishments you've made since Gavins birth. Carmen is now a nurse practitioner and works directly with the heart surgeon. We love you lady!! 
The plan is for us to come home tonight. Can't wait to get to our bed! Thank you all for the continued prayers and love. We couldn't make it through without God and the unending support of each of you. We are so blessed. 

“Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.” Colossians 3:15 NIV

Feelin' the LOVE

Yesterday, was an eventful day. We watched some baseball, played dominoes, walked around the nurses station, read a chapter book (thought that would get some brownie points with Mrs. B ;-)) and even made a few trips to the end zone. The end zone is a fun area where kids can play games, color, stuff a build-a-bear, etc. We could only go for 30 minutes at a time. Gavin is hooked up to a telemetry box that is being watched by medical staff. It shows what his heart is doing at all times. They can't get the information they need while in the end zone so we had to make the trips short. Gavin made the most of it and played lots of pinball monopoly and a fishing game with his Nana. Yesterday afternoon, Grandpa hooked Gavin up with an ice cream sandwich and played some dominoes with him. My parents dear friends, The Johnson's, happened to be here this week so Dr. Mitch joined in on all the guy fun! 

Gavin received the best surprise that literally had him smiling from ear to ear the rest of the night. Mr. P our awesome principal came up to visit Gavin. He brought him some sweet LCS gear and a real football helmet signed by all of the Varsity football players and coaches. Mr. Pepin prayed over Gavin before he left, we're so blessed!
 

Gavin received videos from his classmates. The girls did a Gavin cheer, the entire class sent a video message and the boys huddled up for a Gavin chant. It was the sweetest thing ever! 

Last night our sweet OKC friends, the Houstons and the Coopers brought us Gavins favorite pizza! He chowed down! 
Thank you all again for the food! And thank you Weedens for letting all our family stay at your house! You're always so willing to step in and help us! 


Gavin missed his first football practice as a "coach." He was slightly happy because it got cancelled due to lightning. He takes his job so seriously that he hated to miss it! The entire team got together in the field house to take the sweetest group picture. They held cards that said "We love you Gavin, you are Bulldog strong." If you follow me on FB, check it out. Didn't want to post it to the world without permission from all the parents. We're surrounded with some incredible, God loving families you will ever meet. I never take for granted that we get to be a part of such a fantastic school community. 

Before bed we got to skype this precious boy. He was getting teary eyed and missing us so we tried to make it fun. We "played legoes" and did some upside down talking. Ha! 


We love our little guy, he always knows how to put a smile on our face!

Gavin is still sleeping, we got him gowned up and they started running fluids around midnight. The doctor came in and said we will get started soon and it should be fairly quick procedure. Just want to get lots of pictures of his heart. They'll go through his groin again so Gavin will have to lay flat for several hours afterwards. We will update as soon as we can! Thank you again for all the LOVE, we feel it! 

Thursday, August 25, 2016

Gavin Update

Most of you know by now, Gavin passed out at school (again) yesterday. We are SO thankful for the quick reaction of Coach R, Coach B, the school nurses and our favorite counselor. Once again they handled the situation like pros. We feel so blessed and safe with Gavin being at LCS. The entire situation was handled calmly. I can't say enough about our school and staff!

For those that don't know, Gavin was transported via ambulance to OU Childrens in OKC so we could be with our cardiologist. Once here we started testing to rule out heart issues. 
(Little brother got to come up and visit before we left Tulsa) 
(Gavin getting on his expensive ride 😜)
This morning we got some discouraging news, still trying to process it all. The echo that Gavin had last night has shown changes from his echo in May. There is more blood pulling back into that ventricle that was coiled off in May. With that being said, Gavin will need another heart cath to get the specifics. So we will stay again tonight and do a heart cath first thing in the morning. Once we know specifics from that we will make a plan on any intervention Gavin needs. Please keep praying for Gavin, we know God hears our prayers and shows us miracles in these discouraging times. 

I want to share something I read out of my book at 4 this morning. It was so timely for me....

"We are learning to live as children who are deeply loved. We are learning to live with confidence that every temporary suffering will lead to eternal good, if we just stay near to our Father. Even when it hurts. ESPECIALLY when it hurts."

Wednesday, August 17, 2016

'Twas the night before 4th & 1st grade...

Tomorrow this guy will be in the FIRST GRADE! 

My sweet, fun loving, feisty Brody. From the moment I found out we were expecting you, we just started laughing and since you've been born we haven't stopped. We thought God had a funny sense of humor giving us another baby in the midst of caring for a very sick 2 year old. But you know what, it was the absolute PERFECT plan!! You were the absolute best addition to our family. From a young age, you were full of personality and character. You bring us so much joy and happiness. I don't think a day goes by where you don't make one of us laugh until we cry. I love you Brody Man, I can't wait to see what God has in store for you this year. You keep shining bright, keep being a leader and keep up the laughter! I love you so much!

And then there's my fourth grader...
It wasn't that long ago that I was sitting in a hospital room, begging God to not take you. I wasn't ready, I had so many plans for my little guy. He was going to say his first words, walk, run, laugh, cry, be happy, get mad, go to kindergarten, graduate high school, go to college, get married and give me some grand babies. Even if he didn't do all the "plans" I had for him, I still prayed he would live a LONG, fulfilling, happy life. Every scary moment, every heart breaking situation, God has stepped in and said "keep fighting Gavin, I have great plans for you."   Tonight part of Gavins class bingo assignment was to write down a favorite quote. Gavin picked his own quote that he frequently says to himself "just keep fighting." And he does it, every single day. 

Here we are, his LAST year of elementary. What a bittersweet moment. Gavin my prayer for you is to never get discouraged, (Joshua 10:25) the Lord will always fight for you, (Joshua 23:10) and you keep fighting too! I love you G!

Sunday, July 31, 2016

A Dream Come True

For as long as I can remember Gavin has loved football. He loves to watch it, he loves to share stats, he just can't get enough. His love for football has been a double edge sword. It's the very thing that makes him happy but also very sad. He's had countless therapy sessions sharing his sadness that he will never be able to play tackle football. He has begged and attempted to make deals with the cardiologist to give him a physical pass to play.

Fall is tough for us. Gavin watches his friends come to school every Friday in their jerseys and hears their stories of practices and games. He loves his friends, their biggest cheerleader, but he also struggles with wishing he could do what they do. I have spent many nights praying and seeking counsel on how to handle this situation. I always point out the positives and the fact that Gavin gets to play baseball (which was once a no go). I try to always point out his strengths! And above all I remind him what is truly important in life, his character and that he is a child of God!! At the same time, I am a girl and don't truly understand why football is such a big deal to him. I know he looks at how athletic/active his daddy is, he claps and yells for brother from the sidelines, he watches his grandpa ref college football and cheers for his NFL buddy Brandon. He is surrounded by football. 

Last week, Gavin got an exciting call. Coach T (4th grade football coach) called Gavin to ask if he would be an honorary player/assistant coach. He asked him to help hype the boys up at game time and come to every practice and event. Gavin began to shake and had a hard time getting out his words. I could tell he was on the verge of crying. Sure enough, as soon as he hung up with Coach, tears began to flow.


video

Tonight, Gavin was introduced to the team as an "honorary member" at their annual pool party. I am telling you these are some of the greatest kids around, they welcomed Gavin with open arms.


As a parent my heart is bursting with happiness for my son. I know he will take his role seriously, he is pumped. So thank you Steven, and thank you Amanda for this. You have no idea the impact and the joy you've brought to this little guys life! Lets go Bulldogs!!! 

Tuesday, April 12, 2016

Happy Heart Day Gavin!

I can't believe it's been FOUR years since Gavins last open heart surgery. Gavin had to have his chest opened to place a pacemaker after a period of slowed heart rate. Gavin rocked this surgery and we only spent 2 weeks in California! Looking back on this day and thanking God for His many blessings. He has held us through this journey. Gavins fight and determination is shown every time a "stone" is thrown his way. And I can't forget how BLESSED we are with the greatest family and friends that have supported us the last 9 years. Happy Heart Day Gavin!!! We love you!




(This picture is after he was extubated. He gave us a thumbs up and said "I look like the back pew guy." His sweet friend, Paris York, who went to be with Jesus, would always give Gavin a high five after worship.)





“Taste and see that the Lord is good; blessed is the one who takes refuge in him.” Psalm 34:8 NIV