the roller coaster….

We are really only a few weeks into summer, and it has already been filled with ups and downs – right now we continue to be up 🙂 This week Isaac needed a new feeding tube (because his mama popped a hole in his!), we decided to do it all at once and get an esophagram at the same time – that all happened today.
First things first, the esophagram showed NO LEAK still in Isaac’s esophagus!! What a huge, huge relief that was.
Today was a hard day on Isaac. I have always told him what is coming his way. My grandmother was an amazing pediatric nurse a long time ago, she passed away shortly after I had Isaac, but she made sure to tell me that she wanted me to always be open and honest with him about procedures and appointments. Since Isaac was a three pound baby I have kept him informed. Today he heard “hospital” and started crying….. that was so hard! He had a tough time with the whole day, but in true Isaac fashion he pulled it together and had a great evening.
We took a special trip to get a treat after his rough day, he picked out a fun racetrack – and we had a blast putting it together an racing the cars ALL NIGHT long 🙂
We wish this was the end for Isaac and his medical issues, but it’s not… we have to start to seriously look at options to address his right chest cavity – it is obviously smaller than it should be and the rib fusion limits his lung growth. We have finally made contact with Children’s Hospital of Philadelphia and have sent them information about Isaac. We are hoping their review of it is quick, and we can move forward with a solution!
It really stinks to add more to the Isaac plate, the last thing I want to do is put him through more surgery and more procedures – but we have to give him every opportunity to get big and strong and healthy that we can.
This weekend we look forward to a visit from friends, and a fun pizza party Saturday night with lots of running and playing and fun!

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