Saturday, June 27, 2009

Quick quick

Ok, so I know so many have been praying for the appointments this past week. I will give a quick update, as we just returned from Chicago last night and are headed to Lafayette today. Ok, here goes....

Nolan had an EGK, echo, and chest X-ray on Monday first. We then went and met with his opthomologist. His eyes have not improved and so he gave us an rx for drops. We are to put the drops (which are a dilating/blurring drop) in his "better" eye once a day to blur it, which will then force him to use the weaker eye. Optho dr. wants the eye issues to correct before he's 2, so we are to use the drops until Nolan's scheduled head surgery (cranial reconstruction) on Sept. 10. After the surgery we'll meet with optho again to see if the eyes have improved. If they haven't, he wants to schedule surgery to work on Nolan's eye muscles.

Then we met with the cardiologist to review the earlier tests. Nolan has 3 mild to medium heart conditions that are synonymous with his syndrome. #1 Aortic stenosis - which is the narrowing of the top of the aorta. #2 Mitral stenosis - The mitral valve connects the upper and lower chamber of the heart on the left is also narrow. #3 The mitral valve is also leaking. All 3 conditions are mild to medium and we are praying that they stay that way. They want to see him in a year to go through all the tests again to make sure it hasn't worsened. If it has, they surgically correct it. If it hasn't, that's GREAT! Nolan has no restrictions, and we are to carry on, as normal.

Thursday we met with another neurological surgeon in the Chicago area. What a waste of time! She didn't give us an opinion either way and basically told us it was our decision. Ahhhh! I feel as though she looked at Nolan with a syndome diagnosis and basically felt as though there's nothing we can do for him. He's always going to be delayed, so why bother. She didn't say that, but as his mom, I felt that in her attitude.

So, with that, we pray for his sweet little heart and eyes. We contact our surgeon at Riley to just talk with her about our "second opinion." We meet with the plastic surgeon on July 6th and will also have a little more insight once he's seen Nolan.

On a better note, we had a great time with family in Chicago. We got lots of pictures and I will post them soon.

Have I mentioned today how much I love that little boy? :) Well, I'm just smitten!


Lindsay and Troy said...

I can't even begin to know what you guys are going through but we are praying for you!! Nolan is so belssed to have such wonderful parents:)

Wani said...

You guys have had a busy week. I hope to hear more about it (if you're up for it) when we get together on Friday. Looking forward to seeing you and meeting Nolan.

Tyler and Whitney said...

So much to process, but so thankful too that God already knows what Nolan needs. Great to see you over the weekend, even if it was way too short! Love you!