Easter Blessings!

Noelle's EEG came and went on Friday. Luckily (and kind of unluckily) Noelle had lost some additional weight and came in under 10kg (she is down to about 20 pounds approx). Therefore, they were able to just put some sleepy medicine in through her gtube. This was great news. I totally wanted to avoid an IV. However, the medicine didn't really work and she pretty much screamed through the whole thing. Hopefully it did not mess up the results. The technician at the end made a comment that hinted toward her having seizures. I guess we'll see. The Neurologist should be calling me back any day now with results.

We also celebrated Ross' 30th birthday last Friday!! Last year, Noelle was admitted on his birthday and needless to say, we didn't do anything special for him. In fact, I think he ended up bringing me lunch and was a shoulder for me to cry on! He is an incredible husband and dad!! I attached a picture of his birthday cake. The "old fart" was his idea and Andon got so excited about it...I just did it! haha!

Otherwise, Andon and Noelle had a fantastic Easter. The Easter Bunny was very good to them.

My poor babies are both sick. Andon started yesterday and Noelle started today. They both have nasty noses, coughs and slight fevers. Nothing too alarming...but of course, Noelle needed extra oxygen support to keep her sats up this evening. We were playing the old "up and down game." Nothing new in our house. I took her back to more frequent nebulizer treatments and turned her oxygen up. Luckily, she is still not on high flow. I have been able to manage her oxygen sats on about 2 liters. If she requires any more throughout the night...I probably go ahead and put her back on high flow and call the doctor in the morning. I am so blessed to be able to handle these things at home with ease. Not every household can just pop their kid on high flow oxygen if they need it. The tricky part is...knowing when to call the doctor. That part stinks. Admission to the hospital is always looming in the background when you talk about Noelle being sick. If I can manage her at home without steroid help....I call myself successful. If she gets worse or is all of the sudden requiring a lot more oxygen...of course I would call.

Andon starts soccer this weekend and he is super excited! I have to admit that Ross and I are really excited too. Having a family activity "all about Andon" is a wonderful change!

Also, big news in our family is that I was asked to speak at the March for Babies coming up next weekend. I accepted...however am somewhat shaking in my boots! I will be speaking in front of about 1,500 people! By far the biggest crowd I've ever spoke in front of. Granted, I MC'ed events in college, spoke and taught at conferences....but this is a little different and its about a very personal experience. But one that people need to hear. We have a great story to tell about our miracle baby. If you all are going to be around on April 18th, come to the March for Babies in Reston and support me and all the preemies. I would appreciate as many people as possible to cheer me on. The more familiar faces...the better!



I wanted to post some recent pictures!! I finally am posting some pictures of her new shoes. They are so cute and she is so proud to wear them! I also put up a picture of Noelle in her Pony Gait Trainer. This is helping her to figure out what to do with her legs and to get down the motions of walking while being fully supported. She likes it some of the time! :) Enjoy and have a great rest of the week!

xoxo,

Stacie