This is the amazing journey of our two miracles. John Craig was born on November 30, 2005 at 24 weeks and 5 days gestation. He weighed 1 pound 8 ounces and was 12 inches long. John is a true miracle and an inspiration to all that meet him! Hope Amanda, our perfect little girl, is currently recovering from two brain surgeries to remove a 6cm mass from the center of her brain. Hope represents everything good in this world and she too is an inspiration to all.
For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.
Jeremiah 29.11

Wednesday, August 15, 2007

A Typical Day

Chocolate for breakfast!

Nap time.....or should I say lack of nap time?



And, an afternoon at the ballpark!



What a life!!!

We've been having some fun around here.........minus the lack of naps! The little booger did not sleep a wink (during the day) on Saturday or Sunday! As of Monday, we have been back on track though....cross your fingers that I didn't just jinx myself:)

Let's see....what's new in John's world:
  • We should be starting the blenderized diet next week. His nutritionist is reviewing his PILES of medical records and will have his diet ready soon. We are debating about doing a gluten free diet since celiac runs on Daddy's side of the family......we'll see what she decides is best for him.

  • The other day someone asked me if John was 8 months old.....I simply smiled and said, "No, he's 20 months!" I am sure she felt a little uncomfortable. However, I did go on and tell her his story.

  • Our nightly routine consists of......dinner, bath, story/prayer, bed. After dinner we strip him down to just his diaper (we used to strip him down to the nudie....but that cold tile floor always made someone pee.) Anyhow, now as soon as his bath is ready I yell out to the hallway (where he's playing) and say, "I need a nudie bootie" and he'll take off laughing and crawling as fast as he can..........it's too darn cute!

  • I cannot even remember the last time he had a tremor (head and hands.) That cerebellum is definitely kicking in and doing it's job.....FYI, the cerebellum is the last part of the brain to grow.

  • He loves drinking water from a cup. He also LOVES to stick his hands in the cup of water and make a mess but all we have to do is say....no hands, and he'll put his hands down and open his mouth.....he's so smart!

  • The school that I teach at has a special needs preschool......and as of last year, I was not going to enroll John in it BUT, we got 3 new AMAZING teachers (one is from La Casa de Cristo preschool) this year..........they are awesome and so good with the kids! Now, I can't wait to enroll him.....not for 2 more years though:)

I am starting to see my father in me more and more....as noted above, I am beginning to plan ahead......WAY AHEAD!!!!!!

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2 comments:

Sheri said...

Hey you don't know me, came accross your blog from someone else, but I was wondering what type of cerebellum involvement your son had/has....My son has an underdeveloped R cerebellum (one of mnay birth defects) Since we moved its been difficult to get into a neurologist and we don't go till December. He gets speech therapy, ot and used to get PT up until recently, at our last eval the OT thought she saw tremmors in the hand...I hadn't really noticed, but have since thought I'd seen it a few times
(course it could just be worry) Anyways just thought I'd see what you know about cerebellum and problems that might be associated....thanks:)

Anonymous said...

Ok so now that my son has deleted the novel I had just written I'll try again..I am glad to see that John's tremors are not showing their ugly faces, Kellars haven't shown themselves in a while either, thank god for that..The one place I do still see cerebellar issues w/him though is balance, poor fella..And I feel ya on the naps, I'd do anything for one and here they CAN take one and don't..haha...