Tuesday, February 23, 2010

Please Forgive Me

I didn't realize it's been SO long since I've posted.

I think it's easier to post when things are rotten or fantastic but posting when things aren't exactly like I expected is a little more difficult.

Noah is still retching and gagging after feeds and it makes me CRAZY! I feel terrible for him and am so worried he'll develop an aversion to eating or blow his internal sutures. I do my best to help but I've resorted to constantly having a bulb syringe in hand to help him out with secretions. I feel like I'm sucking the life out of him but his secretions are so copious and thick he just can't deal with them on his own and that makes the gagging and retching even worse. I envision him one day running for the door at the mere sight of the thing (sound familiar, Mom?).

We go to CHOP on March 1st for an MRI and a visit with Dr Hero and Dr Hero II (1st surgeon and 2nd (2nd being our newest hero since he has enabled us to go out as a family for walks, weather permitting and it has been food for my soul!). March 2nd is a meeting with the Keto Team (also our heroes for obvious seizurey reasons) and we have an appointment with Noah's Urologist (to discuss pending surgery). March 3rd is an appointmet with the Opthamologist, Dr M who we haven't seen in about a year and am anxious to hear his opinion on Noah's vision capabilities.

**Amy, can we manage a visit sometime in here? Let me know. (FYI: Amy is a woman we met in the NICU and her daughter had an SCT too. Immediate Soul Sister!).

We had a most excellent visit with Tracy, Jeff, and Baby Colin. OMG! My new nephew is ADORABLE! They almost didn't make it out the door with him! ::Smile:: Their visit recharged my batteries more than I expected.

I think that is about it. We are expecting some equipment to help Noah with standing soon and I am excited. It's been SO VERY nice to play with him and read and not carry around a bowl to catch the last feed coming back to haunt us!

All in all things are definitely better and I'm just left wanting MORE! Give me an inch and I'll take a mile!


  1. Hey there! This sounds encouraging and I love the photo :) I'll keep fingers crossed for good news from all the docs in the big city!
    Love you guys.

  2. Hip Hip Hooray! Sounds like things are looking up! So nice to see Noah with his cousin and to hear that you are getting outside and having visitors... fantastic. I'll be thinking of you in the beginning of March with all those visits, but can't wait to hear all the good news they will be telling you!! Yea!! Just can't wait till you come visit!

  3. We can absolutley fit a visit in! you let me know. Work is flexible so you let me know the date,time and where and i will be there. i am so excited to see you guys!

  4. Love the beautiful photo full of the beautiful people. xoxo. We'll be anxiously awaiting the updates of all impending appointments and sending prayers of love for the best to come.

  5. Well, things seem to be improving! You're like every other mom out there when you say "give me an inch and I'll take a mile"--I'm the exact same way.

  6. Lovely to read. Glad things r looking up. Gorgeous photo... Of all
    3 of u xxx

  7. Thanks for keeping us in the loop. I am glad you sound so dang positive! So happy to hear you guys can take walks, maybe a little sunshine on your shoulder. Much love and many hugs! Jodi