Tuesday, November 30, 2010

Amazing

I have been really slacking on the updates and there's definitely news to update!!!!

Alex had his follow up sleep study more than a week ago. Check here for information from his first sleep study. Hubby definitely felt it went way better than his first study several months before since they didn't charge in the room with oxygen the entire night but we didn't want to get our hopes up. Even the surgeon who took out his tonsils and adenoids out wasn't that optimistic that they were enlarged enough to make that much of a difference in the severity of his apnea. Well Alex amazes the "experts" again, I don't know why I bother to be surprised anymore. He's been lovingly referred to as a rockstar since his wee NICU days and he continues to be one in my eyes.

We met with his pulmonary doctor and he said his obstructive sleep apnea went from severe to mild. His oxygen sats never dipped below 92% during the most recent overnight study. Can you say amazing???? Want better? He is now on his second night of sleeping at home without oxygen tubes all taped to his face. yep!!! This is only the 3rd time in his 18 months of life that he's been able to be without oxygen. Two of those times he's only been able to be without it for a week or two before getting sick and needing it again; so be forewarned the mama with the purell is back in charge during this winter cold/flu season!!!!

His pulmonary doctor agreed to let us hold onto the oxygen and apnea monitor for awhile longer since it was just in August that Alex had pneumonia and the only way he didn't have to be hospitalized was because we had all the oxygen, monitors and nebulizer machines at home. The doctor hopes that as he gets closer to two or three years of age if we can minimize his respiratory illnesses and give his lungs a chance to heal and grow healthy lung tissue, he'll be able to fight off colds, etc without needing the heavy artillery.

and Nicholas? Yeah he is pretty fabulous too!!! He started taking independent steps almost two weeks ago. He is so cute about it too. He flys around pushing anything he can find around the room and then stops about two feet in front of me and raises his hand above his head like he's in class with a question. I've learned this is my split second warning that he's coming for you, ready or not. At first he was lunging himself full steam ahead and pretty wobbly but in a very short time he's working it out and his coy little smile tells me he's pretty proud of himself too!

Those are just a couple of examples of our really fabulous days. But I'm a HUGE fan of the ordinary days more and more lately too. It feels like we've had a long journey to get back to ordinary. Just thinking back to everything that has happened over the last couple of years. The time and energy it took for us to start our family, then all of the complications beginning so early in our pregnancy, the premature birth, the three months in the NICU, the nine surgeries between the two boys in 18 months, illnesses, hospitalizations, new diagnoses, yadayadayada. I am more than happy to get back to the regular, ordinary day to day of life.

With no more anticipated surgeries (knock wood lots of times), and Alex coming off of his long time need for additional oxygen, there is this sense of calm that is just starting to settle in that I haven't felt in what feels like a very LONG time. I feel like we are coming off a turbulent road and rounding the corner at last. Its an amazing feeling. Am I using that word too much? oh well. I've tried other words on and thats the word that fits!

We've gotten a chance at some ordinary lately and I love it.

Goofing around at home:








spending time with family





The first hair cut

 Alex: I don't know about this
 hmmmm.....
 Okay, I approve!

And Nicholas?

 he was supervising
 and flirting.
now he says he has to grow some more hair quick
 so he can come back soon!!!


the Christmas pictures...okay well the header is just a teaser, will be back with more soon :)

6 comments:

Anonymous said...

Oh my gosh!! What exciting sleep study news! SO happy to hear! And I can totally relate to the "first steps plunge". :-) Braelyn is doing the same thing. Glad to hear things are settling down a bit. Enjoy it, you deserve it!
Heather C.

Joanna (and David) said...

That is WONDERFUL NEWS! I just got happy chills all over reading the sleep study news! I'm so happy for you guys! How wonderful for him to sleep free of all those tubes. I know you are loving that! The new haircuts are super adorable. Can't wait to see the Christmas pics!

cfallone said...

It was so great to catch up today. I am so happy for you, Mark and the boys. This holiday season you just might be able to slow down long enough to enjoy its sights, sounds and feelings.

Stephanie said...

I absolutely LOVE hearing about your boys. And the icing on the cake was hearing that Alex is currently oxygen free! Fantastic news! You've got me thinking now, maybe we need to look into having Nate's tonsils and adnoids out...they didn't look like they were a problem but maybe it'll be just the thing. Alex and Nicholas are doing so well! Happy Holidays to you all!

Jill said...

YAY!!! Fantastic update! So great about the oxygen and the walking and everything else! I love ordinary, normal days. They're so underrated. :)

Anonymous said...

Holli, what beautiful pictures from Xmas, and the haircut pics. What beautiful boys you have! Thanks for sharing with everyone. God Bless you all and have a Happy New Year!
Ray H.