Wednesday, July 29, 2009

The much anticipated pics

So, I'm on the phone with one of my bestest friends in the whole wide world discussing how we are sooo excited about our upcoming trip which will unite our darling kiddos for several days of fun in the sun indoor, totally awesome water park resort, and my eldest comes running in the kitchen to tell me that my adorable doll baby who just turned 4 months old on Monday just rolled over! I told her she better be kidding because I'm supposed to witness those kinds of firsts! Much to my dismay, she was not kidding, and after I ran in the den to observe, I got to witness her second rollover in her whole little life from her tummy to her back! My dear friend got an earful of squeals and cheers from our end of the line. Will someone tell me how that happened so quickly please!?! I wanted Cora to stay tiny for at least a little while. She can't be rolling over already! I guess I need to get used to the fact that she is growing at super speeds, probably much quicker than my others, just so she can stay in the game.

Okay, now for the long awaited pictures of our new flooring. I'm only posting pics of the den, because the kitchen is still a bit incomplete. I am so excited I could, well, I'm just excited. Here's the den...

Daddy's chair and Emma's sweet!

Emma wasn't too interested in eating dinner tonight. These kind of days scare me. I don't like to see her like this. She has lost a couple of pounds and is no longer the chubby little toddler running around the house, squealing and having fun. She is now a sweet little doll who is fairly thin, lying in her chair, crying out in what seems like stomach pain. But how does one really know when that precious baby girl can't tell you? Carleigh asked me today if I wished Batten Disease only lasted for a day. I wish Batten Disease would just go away! One day I hope there will be a cure so no other little children will not have to go through the confusion of their minds and bodies shutting down.


  1. Your wood floor is beautiful. I'm so jealous.

    Are there support groups for Batten disease or is it just to rare? Since doctors are sometimes lacking in what is really helpful information, maybe another Mom would be a better source.

  2. Hi my name is Cindy Douglas. My neice Haylee Joyce has Infantile Battens Disease also. I believe you have talked to her mother. It is such a horrible and devistating disease. I check your website often and pray for Emma everytime I pray for Haylee. Haylee is starting to not eat from her bottle. She is getting feedings mainly through her g tube. Her ribs are also turnig outward now. You seem like such a strong family with lots of support. I wake up every day and wish this was all a dream. It seems like it can't be real. I can't imagine my life without Haylee.. I just want you to know that there are alot of people in my family and friends that are also praying for you. Hopefully one day they will find a cure. Stay strong and know that God is there to hold us up. Cindy


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