YAY!! Back in action!

So, I don't know what happened to the blog. But as quickly as it went down...it came back up as quickly. So much has happened in the past few weeks. I'm going to need to post pictures later...but for now the update!

I took Noelle for her regular visit with the Pulmonologist. It was an AWESOME visit!! She is doing amazing and can now tolerate some time without oxygen all together. Otherwise, she is down to about a 1/2 liter of oxygen and then about 1 liter at night. I'm so proud of her progress.

We picked up her braces and shoes on Wednesday!! They are so cute...better than I could have possibly imagined. The shoes are white with pink stripes and the braces are designed with pink and purple hearts!! She is doing really well in them too and can pretty much stand on her own with the walker. The PT also brought something called a Pony Gait Trainer. This allows Noelle to straddle a seat and it allows her to move her legs and push her self around. It is so exciting!

I was out with Noelle the other day and one of the ladies in the waiting room asked me about her. I told her briefly about Noelle's story and told her that we were really lucky. She replied "No baby, your blessed!" So true...so true!!

The only other issue we've been having with our big girl is with her heart rate. It seems to dip really, really low in the middle of the night to the point that her pulse ox machine beeps off. As soon as the machine starts to beep or if I go in there and shake her a little...it comes right back up. But her heart rate should never dip below 50 and it has been going into the high 30's. Scary. We have an appointment with the cardiologist again on Monday. He said they will put a monitor on her for a while to check and see whats going on. He said as long as her heart rate is coming back up...he is not too concerned yet.

More exciting Noelle news is that we are going to be attending a Feeding Clinic down at UVA late this summer. We are going through the lengthy application process now. It is an intensive 2 week program that will hopefully minimize the amount that Noelle has to use the pump. It will get her more comfortable eating by mouth. The idea is to eat more by mouth and less by pump. They have all sorts of techniques and methods to doing this. People all over the country and world have come to UVA for this program and we are going to be lucky to attend!! I'm sooo excited! We will probably stay at the Ronald McDonald House for the 2 weeks.

My little biscuit Andon has been having some issues lately too. We visited with his new pediatrician yesterday because he has been complaining of tiredness for a few weeks now. In addition, tummy aches, back aches and "brain" aches. I noticed this week that he has been running some low grade fevers everyday as well. They took a bunch of blood yesterday and he was so brave. They are thinking he might have Lyme Disease or Mono or something like that. He's so tough! It absolutely broke my heart to watch him get his blood drawn. I'm an expert at holding Noelle down and making sure they get hers right....but have never experienced this with Andon. I seriously almost cried! I think he handled it better than I did. We should have some results on the blood work at some point next week. Other than that....we are having a BLAST outside in the nice weather.

Never in a million years did I picture myself as a stay at home mom. I thought I would be terrible and would not enjoy it at all. It is honestly the best!! I have enjoyed my time at home so much! I don't think I could ever go back to working full time. It is so nice to have fun with the kids and I work on my new business, Everyday Miracles, in the evening after bed time or during nap. I can work when I want to and set my own schedule! It is heavenly!! I have never been so relaxed. I'm finding that I'm enjoying the kids so much more as well! I have had years of rush, rush, rush....hurry, hurry, hurry! It took me a while to calm down....but I honestly love it! I would not change a thing. Everything happens for a reason!!

The March for Babies is just weeks away now! I'm so excited to be marching with my hubby and kiddos! If you haven't donated yet...please do soon!! Aunt Ada has raised so much money for our team...I am so blessed to have her helping us out!!! She has helped raise over $700 for Team Go Noelle Go!!!!!!!!! There are no words to describe my appreciation to her!! :) :) I need to add that money to the website...we are so close to our goal!!

Happy First Day of Spring everyone!! We hope that you all are enjoying the great weather as we are!! I'll post pictures soon of my peanuts!! Happy Saturday!


xoxo,

Stacie :)