Friday, September 23, 2011

On Tuesday Pax went for his monthly cardiologist visit. Once again, it was a good visit. Dr. Madranero said that the pressures around the area they just repaired has gone up some since his last appointment, but not enough to worry her. The averages were between 19-23. At an average of 45 they would do a diagnostic heart cath to see what exactly is going on. Dr. Madranero is hoping that they won't have to do a heart cath for another 4-6 months. Of course, the pressures could stabilize and not increase at all, which is what would be the best thing to happen. :) Overall she was very very happy with how he's doing and once again was amazed that through this whole ordeal he has never shown any outward signs of anything happening to him. This just makes me smile everytime. :D She is also hoping that in the near future we will be able to stretch our appointments to every other month. How awesome would that be??!!

On Wednesday I took Pax for his 9 month checkup at our new pediatrician. I can't tell you how relieved I am to have him at a new office and with a new doctor. *sigh* It's a very small practice with just 1 doctor and a few nurses. And bonus, one of our good friends works there! I'm so happy to have a doctor that actually speaks English and cares about my kid and can actually help him. Anyways, I could go on and on, but the important thing is that he's doing beautifully in his growth and development. He's sooo close to crawling. He's been getting up on all 4's and tries so hard to move, but isn't quite there yet. In the meantime he is very content with just scooting at the speed of light on his belly. He's also been learning to stand and he's been doing quite well. I would expect him to be starting to take steps with help in the next month or so. He isn't sitting up yet, but he has 3 more months to get that one down before physical therapy steps in. I'm confident that he will get it though! 

On another note...we are going through some very important "changes" and seeking God for some direction concerning some steps that we may need to take. Please be praying for us that we would have wisdom and CLEAR direction as to what we need to do. Change is never easy or pleasant but is sometimes necessary. 

Thursday, September 15, 2011

I saw this post from another Mom of a CHDer (congenital heart defect) and decided to steal it to share with you. ;)

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Emily Perl Kingsley 1987

Wednesday, September 14, 2011

Yesterday we got to celebrate the life of a little girl named Taylor. She was 11 years old and endured way more than anyone should ever have to endure in her lifetime. We met Taylor's Mom and Dad while we were in the hospital with Pax. We actually shared the surgical suite with them. Taylor had just had her 4th open heart was supposed to be her last, but a couple days after she got home she developed a life threatening infection and was admitted back into the hospital and put on life support. She stayed there for almost 2 months. Josh and I decided to make their family our first family to adopt as part of our developing foundation, which we still have yet to name. A portion of the profits from the shirts that we sold would go to them to help with bills while Taylor was in the hospital. We also tried to take them food once a week and just provide general support and love to them. This past Friday a benefit was scheduled at their church and Josh's band, Manifest Destiny, got to play at it and we also sold shirts there. Unfortunately that morning Taylor went home to be with Jesus. (The benefit did go on and there were a TON of people there. Taylor's family was hugely blessed.)

I was so struck by this family and so touched by the life of this little girl that I had never "technically" met before. In the weeks that she was in the hospital I felt like I carried her in my heart so I was heartbroken when I learned that she had passed. Yesterday though, I learned all about her and her life and what she stood for. She lived life so incredibly full. Probably a lot fuller than most of us will ever live. Her life was full of joy and laughter. She was told she couldn't play sports or do physical activities, but she played pretty much every sport there was. She greeted each day with singing and smiles. After leaving the funeral yesterday I was so moved. I realized that we need to live each day with more joy. She could have chosen to be down and out about her condition, but instead she chose to be happy and live her life full. I need to wake up each morning with a smile on my face and joy in my heart and a song on my lips. I have so much to be thankful for! 

If you're reading this please take a moment and dwell upon what you have to be thankful for. Do your best to live today with a smile on your face and a song on your lips...even if you sing badly. ;) 

Wednesday, September 7, 2011

We got the laptop back!! Yay!! Hopefully I can get back to blogging more often now. Things have been going very well. Paxton is finally getting back to a "normal" sleeping and eating schedule. He's actually slept through the night a few times in the last couple weeks. We moved him to the crib in the boys' room so I'm sure that has helped. I know it's helped me sleep a little better. :) He's working on crawling still and sitting up on his own. He's gotten a lot better and I'm sure he will get there soon. It takes heart babies a little longer to master those movements that involve the core muscles because so much time is spent in the hospital laying on their backs and then after a surgery it takes a while to recover too. A "normal" baby would be spending that time working on skills like rolling over, sitting up and crawling. However, I think with Paxton he is still in the "normal" range so I'm not at all worried. Besides...we all learn these skills eventually right? :) Here's a picture of him working on his sitting up skills while sitting in a new high chair that we got him. He loves it!

This past weekend we decided on a spur of the moment trip to Branson for Labor Day weekend. We called Paxton's cardiologist and got the all clear to travel so off we went. We had a blast! The weather was absolutely gorgeous so we were able to take the kids outside to play and one day we even went to The Landing to go shopping. Pax got to play outside for the first time ever, which was adorable!

Here are a couple pictures of Pax playing outside and one of Josh and Kaiden on a little ride at the landing. I also included one of Dakotah on his first day of first grade.

Friday, September 2, 2011

Looks like I'm gonna have to blog from my phone for a while. Our laptop is "sick" and we don't know when we will get it back. :( To update from my last post...Pax is doing wonderful. He is now 4 weeks post op. He had his post op appointment on August 18th. It was a wonderful visit. It was the 1st time we have had an appointment that there were no immediate concerns. I actually heard the words "his heart looks beautiful". I really believe that God gave us the best cardiologist and surgeons. We asked for the best and that's what He gave us. Dr. Madrenero was so emotional about him. She said multiple times how scared she was before, during and after his surgery. She said that he truly is a miracle. She was so ecstatic about how well he did and how quickly he recovered. We don't have tO go back until September 20th! I love hearing that my kid is a miracle...especially from doctors. I love it when God looks good.

He has continued to improve each day at home. He is starting to sleep better and he's eating better. He's very very active...crawling all over the house getting into everything he shouldn't just like every other baby his age. It's so great! :)