A week and a day!

What a week it has been!! Feels like a lot longer than a week that we were DISCHARGED from CHOP. It's been a week and a day! Brody has been loving the outside world! We had to go to the hospital every day except for two different days when we were cut free from everything! Even though we were discharged we spent quite a lot  of time at the hospital. With Brody being on Coumadin we had to keep a very close watch on his INR ( how thin or thick your blood is) because of his mechanical valve. We had to take him for blood work just about every day! Awful! Poor kid does not have good veins so getting blood is a challenge. Usually a few hour challenge with multiple people and multiple sticks just to get a tiny tube of blood.

Regardless... We did it! Brody did it! He is the strongest little boy.. He has been put thru so much... No matter how big or how little this little man prevails! The two days we were free we took advantage. Took our boy to the zoo where we met the CEO of the Philadelphia zoo... He greeted Brody with a cheetah stuffed animal and took Brody behind the scene to meet and greet some of the animals.

One of the cardiology fellows that took care of Brody set up the meet and greet for him! Was such a good time for Him.

We also took Brody to the aquarium so he could enjoy NEMO! His favorite was the ferry ride over! 

Besides our two days of fun our friend Monnie was in town on business, so we had some new company. Brody of course enjoyed her as did we! A new fresh face to hang out with! We walked and enjoyed the beautiful Penn State Campus.

We had our final appointment with our cardiologist on Wednesday!

Dr. Swast said " he looks great" yes he does! Our team here has done amazing things for Brody and for our family! For now his team says he's done! Meaning there are no more surgeries that they can do...... Now we just pray his little heart holds strong... And when it's time for a new plan we will be right there with him! You never know what life is going to throw at you... So we are just going to live, be happy and enjoy each other. We may have a new plan in 6 months or in 10 years... The Dr's basically just don't know how long his heart will last. You can't live on what if's because then you miss all the good that is happening. All we can do is love each other and enjoy life!

For now we are burnt out on Philly! We are staying close for another week before we return home. We drove to Ohio to stay with my best friend Melissa, to get out of Philly, to enjoy fresh air and not city air. A home environment is wonderful! Even if it's not ours. Another week of being close to CHOP then we fly back to AZ! Brody has been either in the hospital or at the hospital and to say the least this little guy has some PTSD going on. Hoping it will resolve completely in time. Last night was the first night Brody did not wake up screaming and yelling to go outside. Outside was his safe place, for the past few weeks he's been waking up multiple times a night just terrified screaming and wanting to go outside.  Being away has been very beneficial to him! I'm hoping it will just improve as the days go on... And the hosptial becomes a very distant memory... For all of us! God is good. Kiss the ones you love!