Hello! I just wanted to give a quick update. Pax had his cardiology appointment yesterday and it went fabulous. I have never seen him so compliant before. Usually he freaks out if anyone other than close family comes near him, but yesterday he didn't fuss at all during his echo, EKG or his blood pressure and oxygen sat check. In fact when Lisa, (the nurse) walked in the door to do his pulse ox and blood pressure he immediately sat down and took his shoes off for her. Such a sweet boy! It made yesterday so much more peaceful.

Okay so his pressures are unchanged from after the cath in St. Louis, which is great news. Everyone was really pleased with how well he handled the procedure there and feel like they were able to give him some time before surgery. His pressures are about 50 right now. When they get to about 80 they'll want to do the surgery. The Ross-Konno is what they are looking at doing. They all think surgery will probably happen in March or April, but I'm doubting that. I think he'll go much much longer and I'm still expecting a miracle. I know wht God has already started in him He will complete. I can't remember if I shared this or not before, but a couple months ago when Josh was praying about Pax God spoke to him saying He would give him a new heart. A couple Sundays after that we were being prayed over and that was prophecies over Pax again and then it happened a 3rd time from someone else. I think God's trying to say something here. Haha! We have a few scriptures that we have been standing on that I'll have to share another time. I'm typing this on my phone an don't have the references on hand. So that's what we have been praying and speaking over him. Pax has a new heart praise God! 

Thankfully our St. Louis trip was covered by donations from people, but we have been having "fun" trying to stay afloat from Josh missing that week of work. Please be praying and believing with us that extra money would come in somehow to help get us back to where we need to be. God is so faithful and has brought us so far. I know He'll keep providing for us. 

Pleas ignore the typos...my phone isn't compatible with my fat fingers! Haha

St. Louis!!

What a tiring, fun, crazy, fast week this has been so far! We have been in St. Louis since Tuesday night for Pax's tests at St. Louis Children's Hospital. Our drive up here was the most quiet easy trip we have ever had...that's probably because we only had one kid with us though. ha! On the way up here we stopped in Springfield for our favorite coffee at Mud House downtown and then we spent some time at the mall letting Pax run off some energy.

Here he is introducing himself to the mannequin at Old Navy. He tried to ask for her number, but she didn't respond...

We successfully wore him out enough for him to sleep almost til we stopped for dinner in Rolla, MO. He wasn't very happy with our choice of Panera for dinner. He didn't eat a thing. We ended up making it to our hotel around 8:30pm. We were very happy with our hotel choice although we weren't happy to find out that we have to pay a ridiculous amount for parking. We are right in the heart of downtown St. Louis. The Ram's Stadium is literally right across the street from us. The St. Louis Arch is also just down the street as well as the Cardinals Stadium. After "exploring" the downtown area this week we have found it to be a really neat area full of really cool shops, restaurants and coffee shops. It's like downtown's that you would see in the movies where everyone walks everywhere and they live in buildings that have stores below them. There's a grocery market down the street that has apartments above it. You literally take the elevator down into the market. Pretty nifty. We also found the BEST COFFEE IN THE WORLD! It's called Park Avenue Coffee. They are also known for their "Gooey Butter Cake", which is a.m.a.z.i.n.g. We also found a little Italian restaurant called "Stefano's", which had the best veggie pizza I have ever had in my life. If you ever make it to St. Louis you have to try it. 

Okay so on to what this week has entailed other than the food...

So Wednesday our appointment was at 11am for an echo, EKG, chest xray and general assessment. We left our hotel an hour early thinking we could get breakfast on the way and maybe stop at the store for some hairspray and deodorant. (Our hotel also didn't have breakfast provided...geez!) Unfortunately we ended up getting lost and had to go to the hospital with frizzy hair, smelly armpits and extremely empty stomachs. Thankfully we were able to take a break between appointments to grab lunch in the cafeteria. Anyways, everything went very slow, but very well. We got out about 3pm and decided to go check out the Arch. It was the 1st time either of us has ever been to the Arch so it was pretty cool. After we went to the top and did some other exploring we took a walk down by the river where Pax fell flat on his face into the rocks and ended up with a black eye. Great, now everyone at the hospital is going to think we punched our kid! Anyways, here are some pictures. 

This is at the hospital on Wednesday. I guess Pax was trying to make Daddy play peek a boo.

This is the view of the Cardinals Stadium from the top of the Arch.

The big round dome looking thing is the Ram's Stadium. Our hotel is right behind it...you can't see it though.

This is a picture of the Arch from just below it looking up. It's HUGE so I couldn't get the whole thing.

 Us in the little...and I mean little "elevator" riding to the top of the Arch. 

Thursday our appointment was at 11:30 for Pax's heart MRI. It lasted about 1 1/2 hours or so. Unfortunately we had to hold him down so they could place his iv, but when it came time to go back I was able to carry him back to the room where they gave him some sleepy meds in his iv. He basically passed out in my arms and then I handed him over. It was nice cause it wasn't traumatizing at all. We were released about 3:30pm so we decided to make a very fast trip to the zoo, which is just up the street from the hospital. We basically made a little circle to see the hippos, elephants, cheetahs and a couple other animals I don't remember. They closed at 5 so we only ended up being there for about 30-45 minutes, which was fine with me because I was a hot mess and I was exhausted. Something about hospitals makes you tiiiired! After that we made it to our hotel just before downtown became crazy. (There was a Ram's game last night.) We had a nice relaxing evening last night. 

Today was Pax's heart cath. It was scheduled for 10:30am, but we ended up having to wait until 1:30pm! Poor kid hadn't eaten since dinner last night and hadn't had anything to drink since 8am. He was not a very happy camper, but we successfully distracted him for most of the morning. They have an amazing rooftop garden. There are swings and lounging chairs as well as regular benches so you can take in the beauty. There are also a couple of telescope's to use if you want to spy on the rest of St. Louis. Here are a couple pictures that I took of the garden.

On the same level as the rooftop garden there is also a big playroom for the kids. It was full of absolutely everything that a kid could want. There was also a teen room, but we didn't go in there. There were video games (wii and nintendo ds), board games, puzzles, crafts, kitchen play area, musical instruments, blocks (I started a block house. :) and sooo much more! There was a huge dinosaur collection too that I'm sure Dakotah would have been so jealous of. Pax had a blast playing in there! Here are a couple pictures of him playing.

He also got to go for a ride in a car while we were waiting...

Okay so he finally got to go back for his cath about 1:30pm. He got done around 4:30 or so. He did great during the cath. They were able to balloon the aortic arch as well as the subaortic area that was of the most pressing concern. They originally didn't think they would be able to balloon that area, but they were. Unfortunately the ballooning didn't help much and actually caused his mitral valve to be leaky now and caused the leaking that was already in the aorta to go from mild to moderate. So basically it helped a little, but not much. So for now the plan is to communicate the new information with his cardiologists back home and come up with a plan. For tonight we are staying in the Cardiac Intensive Care Unit (CICU) so they can monitor him overnight. He has to stay laying flat for 5 hours so they are keeping him sedated until about midnight. Every once in a while he wakes up and cries out, but he konks right back out. At midnight they'll take him off sedation and let him fully wake up and then he'll be able to eat and drink. As long as he's doing good then we will get released sometime tomorrow. It's probably going to be a long night, but hopefully Pax will want to sleep even though he's been sleeping the entire day. Are we that lucky?? We'll see. 

We have been very very impressed with the hospital so far. The staff has been absolutely amazing! I thought that the Children's hospital back home was amazing, but it doesn't even compare to this place. Everything about this place was made with kids in mind. The only thing that Tulsa does better is that it's more accomodating to the parents. The rooms here are small, there's no bathroom in the room and no couch/bed except for a recliner. Oh well...I'd rather have excellent care for my kid than be able to sleep and pee in the same room as him. 

Tomorrow, we get to go to Branson and spend the night with my brother and sister-in-law and get to spend time with my Dad and step mom. And then Sunday we finally get to go home! I can't wait to sleep in my own bed and get back to normal routine! 

Okay, I think that's it for now. If you made it this far hooray for you! You have a great attention span. haha 

Thank you for praying for us and standing with us in faith for Pax's healing.

I've had this song burning in me all week and then the worship team this morning sang it and it's really blessed me so I thought I'd share it with you. It'sa song called "Healer". You can find it by Hillsong or Kari Job, which is my favorite.

You hold my very moment
You calm my raging seas
You walk with me through fire
And heal all my disease
I trust in You, I trust in You

I believe You're my healer
I believe You are all I need
I believe

And I believe You're my portion
I believe You're more than enough for me
Jesus You're all I need

You hold my very moment
You calm my raging seas
You walk with me through fire
And heal all my disease
I trust in You, Lord I trust in You

I believe You're my healer
I believe You are all I need
Oh, I believe

I believe You're my portion
I believe You're more than enough for me
Jesus You're all I need

Nothing is impossible for You
Nothing is impossible
Nothing is impossible for You
You hold my world in Your hands

Nothing is impossible for You
Nothing is impossible
Nothing is impossible for You
You hold my world in Your hands

I believe You're my healer
I believe You are all I need
Oh, yes You are, yes You are

And I believe You're my portion
Lord I believe You're more than enough for me
Jesus You're all I need
More than enough for me
Jesus You're all I need

You're my healer

I wanted to share an update about Paxy with you all. I waited so long because we just wanted to process the information and we wanted to wait until we received some extra news, which we got yesterday. So basically, our surgeons here in Tulsa have decided there's nothing more they can do for Pax and thought that a transplant was the best option for him. So they sent his records off to Dr. Canter in St. Louis to be reviewed for transplant. Yesterday Dr. Canter contacted Pax's cardiologist who then relayed the info to us. They don't think Pax is a good candidate for transplant right now because all of his numbers are so good and he's doing so well. However, they do think they might be able to do a surgery to help him out. They want us to go up to St. Louis to have some tests done to check his heart for fibrosis/scarring. If there isn't scarring then they can probably do the procedure. If there is too much scarring then they'll evaluate him for transplant. So right now I'm just waiting on a call from St. Louis to schedule everything.

In other news I'm soo excited today because my weight finally entered a new "decade"!! I haven't been in this decade since probably 2006. I've lost 15 pounds so far and believe me I have worked hard for those pounds! Now just... A whole lot more to go! Haha

Hey y'all! Just wanted to give a quick update. Pax had his heart cath Tuesday morning. (I included a couple pictures for you. The first one is him in his big boy gown beforehand and the second is him trying to come out of lala land afterwards.) We went in at 5:30am Tuesday and they started about 8:00am. It only took about 1 1/2 hours and he did great during it. Other than having trouble throwing up afterwards there weren't any other issues recovering. They were unable to balloon anything unfortunately. The narrowing ended up being just below the aorta...basically it looks like its the aortic valve which is just below the actual aorta. The area he had repaired last August is just above the new narrowing and they said it looks great. The doctor was actually really impressed with how good it looked. The site where the coarctation was repaired during his 1st surgery has gotten a little narrow again, but not do much that they're concerned about it. The doctor said it could be a few years before he would have to balloon it. So back to the new narrowing...tomorrow is the big conference between all the doctors. They'll come up with a gameplan and then the surgeons office will call us to set up an appointment to meet. I've been told a couple different things regarding the possibility of surgery so I'll just tell you what is actually decided when we find out. I'm hoping I will hear about an appointment tomorrow afternoon, but it'll probably be Monday. It seems like each time we get a little more emotional than the last time. I just dread having Pax go through anything else as well as the effects that it has on the family. It's kind sucky, but I know that no matter what happens that God will give us the strength needed and we will come out the other side even stronger than before. Please keep our family in your prayers as we face the next step. Thanks!

Cath Scheduled

Alrighty, so here's the latest...I talked to Pax's cardiologist on Monday and the surgeons agreed that he needed to have the heart cath now. Dr. Madronero said they were concerned though that if the balloon can't be done that surgery wouldn't be the answer for him. I know his age and size factor into that, but I don't really know what exactly that means. She didn't go into any more detail about the meeting than that and I didn't ask because it doesn't matter...the balloon will work. His heart cath is scheduled for the 24th...arriving about 5:30am and starting around 7:00am & pre-op stuff the day before. Please be praying with us that the location of concern is located high enough that it can be ballooned. God has been so good and has brought him through so much already and we've seen Him do so many miracles in Pax before so we don't expect this to be any different. Also be praying that he stays healthy the next couple weeks so no scheduling changes have to be made. Thanks a ton!

Oh, I thought I'd include a funny picture for you. This past Friday Josh and I went to the wedding of some really close friends. I don't consider myself to be photogenic at all, but I'm pretty good at taking goofy pictures so here ya go. (The other woman is my lovely sister-in-law, Lish.)

And here's a picture I took of Pax and Kaiden playing in the laundry basket.