countdown

It is May 6th, only one more week until the heart cath on May 13th. I actually think that it is going to happen this time instead of the previous 4 times where it was canceled. We are ready to get it over with and be done, but we just want a good outcome. We have known for a while that he had a kink in his Left proximal pulmonary artery. This is an important one and it takes the blood to the lungs. Therefore, we want to make sure that it continues to work well. Right now he is not symptomatic, but this is something to be handled before there is actually a problem. Right now, the only 2 concerned are that I think he is teething again and he usually spikes a high (103) fever with teething and his hemoglobin has been low. We had blood drawn yesterday, so we hope the numbers are better than 2 weeks ago (8.6) and normal is 11-13 for this age.

The heart cath will take between 4 and 6 hours. That is a really long time to wait. But, I do not want them to rush anything and Miles is a complicated kid anyway. Then he has to "sit still", yeah right, for 6 hours. Are you kidding me, 6 hours. So we are starting to pack the bag to keep the little guy entertained. We are getting pretty good at packing this bag, which also includes overnight stuff for us too, since this will be the 4th attempt at the heart cath and bronch.

Everyone is ready for the heart cath to be done and over. It is weighing heavily on us, especially my mom. My parents will continue to keep an eye on us and try to keep us sane while everything is going on. On Saturday, Justin's mom flies in for the week to help keep a watch on Sophia while everything is going on with Miles at the hospital. She will be taking Sophia to and from school and also staying with her while we are at the hospital.

I have been collecting stuff for Sophia and Miles goody bag. Miles is getting new matchbox construction cars and Sophia is getting a book of tattoos. It is always really hard on her when we have to be gone. I know that she is concerned that we will be gone a full month like before, and it is hard to reassure her that it will not be that way, even when you are not really sure.

We all continue to just move on and make it through the day. I do start to reflect back to the beginning days and get sad. It is just so hard to think of those days, I try not to think of them too often. Just remember to give your healthy kids a big hug for me today and prayers would be greatly appreciated.

love,
the ohio taylor family