Yay for Spring!!!

We could not be happier to see spring arrive in the Mikels house!!! It has been quite the sick winter around here and warm weather and sunshine are a welcome addition. We have had a pretty great couple of months and are really enjoying our new house. I must say, I have finally embraced living out here in Front Royal. I have found friends, a great church, and people that truly care about our family. Ross asked me if I wanted to move back to NOVA eventually and my answer was "No!" Our life is out here and we love it. Of course, I miss many of our NOVA friends...and don't get to see them as often as I want to.

Ross and I are still on the fence about Andon's Kindergarten placement. We have signed him up in the public school system out here...but are still weighing our options with private christian schools in the area. There are several choices...I just need to get out and tour them! Of course, we may keep him at Dynamic Life. We are just not sure at this point. It was bittersweet to register him for public school. It seems like yesterday that he was my little 6 lb peanut. Otherwise, Andon is doing wonderful. He is really progressing with reading and tries to read EVERYTHING...especially while we drive. I just can't believe what a big boy he has become.

As always, Noelle has the longest report. 2011 has been so amazing and so devastating for Noelle. She is progressing in every developmental area. She is really starting to talk and is now putting two words together "Dora Book," "No Mommy", "more please." She is such a big girl!! She is walking really well now, attempting to jump and attempting to run. Her Physical Therapist even said we could graduate to only using her orthopedic braces 50% of the time.

Unfortunately, her lungs seem to be struggling more and more. No one is really sure why...but she seems to continue to fight her lungs. Doing any type of gross motor really tires her out and makes her work extremely hard to breathe. Her lungs are the only aspect of her that is not consistently progressing. Last month, she was admitted for a Bronchoscopy. The docs did general anesthesia and went down her windpipe with a scope to see if there were any glaring issues with her airways. The study showed that she has slightly twisted airways which are smaller than usual. However, the docs decided that these abnormal ties should not hinder her breathing more than usual. So, we decided at this point...maybe her issues were vascular. We tried a trial of the medication called Sildenafil. Which is basically viagra (how many of you can say that your baby girl was on viagra?). We have had many laughs about it. To make a super long story somewhat short...it didn't work either. We were hoping that the increased blood flow between the heart and lungs would help her tremendously. However, after 4 days...we had to discontinue. She was much more out of breath than normal and her school was even calling me because they were even uncomfortable with her breathing. Even after coming off the medication, she has continued to struggle...so I'm not convinced that the medication made things worse. But who knows?!

This basically puts us back to square 1 with her lungs. Noelle goes back to the pulmonologist on Thursday and we are hoping to figure out when the trip to CHOP will be for our second opinion. It is time to get some fresh eyes and a fresh perspective on Noelle. Noelle could really care less that her lungs don't work very well. Unfortunately, this also means that she cannot self regulate when to stop. She will go-go-go until literally she is too tired to keep going. You can hear her wheezing across the room before she stops herself.

Great news...last month she also completed a 3 day EEG at Children's National in DC. This test showed that she does not have silent seizures!!!

So, that is basically where we are at. We are ready for summer and fun! We leave for the Outer Banks during Memorial Day week and could not be more excited!! Hope everyone is having a great spring!! I will try to update as soon as I have more information about our CHOP visit.

xoxo,

Stacie :)