Monday, April 4, 2011

perfect timing

We've had a wonderful month of laughing and cuddling and growing (even hair!) and breezing through milestones.  Adeline is a happy, fun, and very busy little girl!   She's babbling and repeating some sounds - if she sees Pete, our cat, or if you ask her her what a kitty says she hisses! She says "Hi!" and "Oh, Oh," (and loves to play the "drop game".) She patty-cakes, loves peek-a-boo, and throws her arms in the air when you say "Soooo big!"  She's cruising the furniture, and walls, and doors...she will grab onto anything she comes across and will pull herself up for a better view.  Anything that we carelessly leave on the coffee table will be inspected and then thrown to the floor.  And if there is one itty-bitty piece of anything left on the floor she will hunt it down and put it in her mouth.  She is surrounded by baby toys but prefers anything electronic, or anything her brother wouldn't want her to touch.
Basically, she's a normal, healthy, happy, and curious 10 month old girl.  And we cannot even begin to express how grateful we are for that.

We've had one small set-back.  I (along with our daycare provider) have noticed that Adeline's head isn't as round as it was after surgery.  Her head is growing, but it seems to be becoming elongated again.  I took her to a follow-up appointment because she was put on a nebulizer for wheezing, and I mentioned it to the pediatrician.  I was hoping the pediatrician would say that she thought it looked fine, and not to worry about it.  But she didn't.  She asked when Adeline was going to be seen again by the craniofacial doctors.  Long story short, Adeline's April follow-up appointment with her neurosurgeon was moved from the 19th to tomorrow. 

I am sure that we are all overreacting.  I am sure that the neurosurgeon will say that everything is fine - it has been only three months since surgery - she has a lot of time for her head to "round out" again.  They said from the begining that they wouldn't even consider a second surgery until 9 months post-op.  But I can't help but feel that nagging "mommy instinct" that I tried to ignore when I first noticed that Adeline's little head wasn't normal.  And to be honest, I don't like it.  After Adeline's surgery I swore that I would never put her through that again.  That no matter what, that horrible week was not worth it.  But now that I know how much it has helped her - now that I know how much she was suffering the couple of months before it - now that I know what could happen if we didn't allow the surgeons to release the pressure on her brain and reshape her skull - I know I have to put my selfish fear aside and trust that God will guide the surgeons to do what they need to do.  But, God, please tell me we are all overreacting.

So as I was getting Adeline ready for bed tonight I spent a few extra minutes kissing that little (not so round!) head of hers.  And I told myself not to become obsessed with the what-if's.  And God sent me the perfect little gift, at the perfect time.  An amazing "cranio-mommy" created a Craniosynostosis Awareness video with pictures of beautiful children wearing headbands and "do-rags" that she made and sent to each family.  I have to admit, I didn't get past the first 10 seconds of it - I started bawling and had to shut it off!  But I am going to force myself to stomach it before I go to bed tonight. 

The link is to a Facebook page, and I don't know if it can be seen outside of facebook, but it is worth a try.
Avery's Angels Awareness Video
I am hoping she will post the video on her webpage so it can be seen by anyone.

Godspeed baby girl.


  1. Sending prayers your way....Sherry & Gil

  2. I am hoping for the best for you and sweet Adeline!!!! Thanks for posting our video. I will try and get it on the website soon. Keep me posted on how she is doing <3

  3. OMG I think that God is getting angry with me as I have so many on my prayer list but you and Aaron know that Lynne and Adeline are on the top of that list. Please let us know as soon as you find out what is going on. Your little family has kept me going during some bleak times lately. Nile is always our laugh for the day and Adelines pics are what keeps me going. Luv you all

  4. Sending lots of prayers and love for little Adeline!! We are thinking of all of you!! It is amazing how you have stayed so strong. I admire your incredible faith in God!! Love to all of you!!!

  5. I'm glad that you sent me an update today. Braydon still hopes that he gets to see his girlfriend next Friday. He wants to show her all of his hair. :)