Friday, March 5, 2010

New Year's Rockin' Eve

While things aren't happening as quickly as I'd hoped (developmentally) they are definitely improving. The weather is getting nicer and we are able to get outside more and more. I just want Noah to start doing STUFF! GOOD STUFF (not seizing or throwing up; I always feel like I have to cover my bases when it comes to asking for things!) like reaching, smiling, chewing, you know, normal baby stuff! I am just never satisfied! I just keep pushing and most times pulling for more.

Now for an update on the recent doctor visits:

MRI: No changes! WhaHoo!
AFPs (alpha fetal protein level which is a tumor indicator): DOWN DOWN DOWN from last time! THANK GOD!
Surgeons: Satisfied with progress so far. Surgeon 1 we will see in a year and have another MRI. Surgeon 2 hopefully we won't see again (nothing personal!).
Urology: The "ball dropping" isn't just for Dick Clark on New Year's Eve (my very poor attempt at humor). No-man does have a testicle that didn't descend so they have to go in surgically and bring it down. This surgery is scheduled for April 12th. YES folks, ANOTHER freaking surgery. Whatever! SO SICK OF THE HOSPITAL! But hopefully this will be it for a while.
Keto Team: Pleased with progress. Will talk about weaning meds at our next visit in 3 months if our little man can manage to maintain seizure freedom.
Eye Doc: Wants to see how No progresses and hopefully with head control, eyes will improve. Keep fingers crossed!

That's about it, I guess. Three days is a long time to spend running from floor to floor at CHOP but it was SUPER nice to have my NICU friend come along for a day. Thanks Amy! We are so happy to be home and getting back into our routine.


  1. Jason & SherryMarch 6, 2010 at 3:58 PM

    Joy! Joy!! Joy!!! Oh, what wonderful news...Little No is our hero and miracle. We love ya'll and are so very happy to hear of progress. xoxoxo

  2. I love the outside pics! Thanks for the update. Hugs!, Jodi

  3. The pics are great. Getting outside must feel like a wonderful gift. Prognosis sounds good. Hold on to the positive super mom! This means we will get to see you soon soon soon!