Wednesday, March 5, 2008

Day 59

Hey Blog Family! Oceana had another relaxing nap yesterday. I think this must be the favoured way to sleep. We took a very short walk to the store yesterday during the house showing - and she fell asleep in the stroller. We were hoping she wouldn't fall asleep. I don't mind her taking naps - but when they START at 4:30 it's like a disaster waiting to happen. Thank goodness she only slept for an hour. And anyways, Miles arrived minutes later, so she needed to get up and play. Miles came in and said, "Toys?!" Poor kid was an his great gramma's last night and I'm sure he couldn't touch anything. Haha. He saw Oceana and assumed there'd be toys! Too cute. It'll be fun this morning when Oceana realizes that Miles is still here! They're still sleeping 18 hours of jet lag!

Joshua's doing pretty good. But that encephalocele definitely looks larger than it was. Nothing much to report there. I'm out! See ya!

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  1. Joshua looks so cute in that little outfit! I am praying for you and your family. Mya god continue to give you grace one day at a time.
    Praying in PA

  2. Is Joshua's cele as big/long as it appears to be under his cute little covers? I saw the pic from his birth, but I can't really tell....

  3. Hello! I stumbled across your blog a week or so ago, and have read all of it from beginning to end. Our first son, Will, was born with Meckel-Gruber syndrome - a lethal genetic condition. Will had an encephalocele too, as it is one of the main symptoms of the condition. Unfortunately, Meckel Gruber also presents with major kidney issues, so he was only with us for 15 precious minutes after he was born - but we wouldn't have missed those minutes for anything. Our second son, Charlie, does not have Meckel-Gruber syndrome, but he does have Hypoplastic Left Heart syndrome - a congenital heart defect which means he only has half a heart. He's four now, and is a real joy to us. I just wanted to let you know that I really enjoy checking in on your blog, and am praying that all continues to go well for you. Feel free to check out Charlie's blog, or Will's webpage if you'd like to! With love and best wishes, from Cardiff, UK.

  4. Joshua sure does look like he is filling out! He is so cute in his clothes. I am sorry to hear that his cele may be getting bigger. I continue to pray for him. I actually said quite a long prayer for him and the other babies whoes blogs are off to the right of yours. I just keep praying for a miracle...wait...Joshua IS a miracle :)

  5. Susie!

    I had a dream last night that you guys came to visit me! I got to hold Joshua- care to make that come true? :P

  6. I have a question. In the last couple of pictures of Joshua, it looks like his shoulders and chest are very large. Is this just because his head is smaller so they look larger by comparison, or are they actually larger than normal? I ask because my husband's brother has a condition where certain bones grow too long, and his chest and shoulders (and hands, actually) look a lot like Joshua's in the picture where he's wearing the overalls. But it may just be the way he's laying as well. Just wondering - thanks!


  7. Happy Birthday Joshua!!

    I have been following your blog for awhile now and praying daily for you all.

    Blessings to you all.

    Kandi in AZ

  8. Hi Susie, I havn't left a comment in a long time but I just really wanted to let you know I check your blog daily and pray for you guys often. I'm sorry to hear about Joshua's Cele getting worse, you will be in our prayers.

    And i just love that quote from Abe Lincoln. Your right, we all need to enjoy the cuddling, hugging and kissing more often. Thank you for that reminder with my own children.

    Oceana is such a cute little girl, I just love the blond hair, tan and her dancing :)

  9. Did you start another blog? I loved reading about your family....

    rita from alabama usa