Tuesday, September 18, 2007

Noah's Progress

Noah is doing great! We are slowly weaning his O2 and hope to have it off before we go home. He's making huge progress with his physical Therapy. We had an appointment today and don't go again for 2 weeks but his Therapist said she wouldn't be surprised if he rolled over by then. And today we made MAJOR progress on eating. Last Thursday at his eating therapy we tried a new bottle. It's the type of bottle they use on infants with a cleft palate. It's just easier to suck and has a variable flow. But its been working good. He's been using it off and on all weekend but hasn't been able to take a full feed from it. Then I made the mistake of giving him some meds in his mouth (I really wanted the feeding tube gone) and that made him so mad his puked and wouldn't even let me put his paci in his mouth the rest of the night. So I've decided to work on getting all his feeds by mouth before trying the meds. Then today, he woke up from his nap and took his entire feed (all 80 cc's) by mouth!!! He had to burp a few times and needed a sugar shot several times, but he actually ate the whole thing and in only 20 minutes! I was so proud I had to call Allison and his OT Therapist and brag. What a good little boy! So we are definitely on our way to being tube free.
Also, our current GO HOME date is scheduled for October 25th. We'll go to clinic in the morning, be cleared by the afternoon if all is well and we will drive home the next day (the 26th). The idea of "home" has become such a figment of my imagination. I almost have to ask myself if it's really there. But I am SO excited...
One more thing.... I recently found out that my Aunt Ann is very sick. She had to have surgery and there were some serious complications and she can no longer talk and is paralyzed. I don't have many details, I just know she's in serious need of blessings. Please keep her in your prayers. She is such a wonderful sweet woman and her family loves her very much. And I would very much appreciate your prayers on her behalf.
Much Love,


  1. Hi, again, Crystal
    I just wanted you to know that Bill
    & I just returned from SLC this weekend after spending part of each day at the hospital visiting Ann. She is doing so much better.
    She is now talking, breathing on her own, walking without much help, moving the left arm, but not the hand too good yet. Therepy is wonderful. They took the trake (spelling?) out and now she can talk and is learning to eat real food again. The stitches were removed from her head during the week and Jana cut the right side of her hair to match the left. She looks so much better. We are all so pleased and know that Heavenly Father has heard all our prayers. Your grandmother has been like an angel to Ann and been by her side so much. She told me she felt bad that she couldn't keep up with your problems. She loves you so much and knows you are in good hands. Noah's pictures adorn their refrigerater door. We continue to pray for Noah to be able to come home soon. You are a wonder and we admire all of you very much. Love, Aunt Marilyn

  2. Crystal,
    Omigosh! He's just so adorable! I just wanna hold him!!! I'm so happy to see an update as you know how many times I check your blog a day (I know, I have no life)and it's great that's it's a happy positive update. We're still praying everyday for Noah and your entire family. Oh and I'm happy to see the post above that your Aunt Ann is improving so much. We'll put her in our prayers as well! You'll be home so soon and I seriously CAN'T WAIT! I've been SO bored without you here! Love, Jen

  3. Crystal,

    Great job Noah!!! I am so happy that he is eating by mouth. Soon he will take everything by mouth and we can celebrate the day that he is tube free!
    Yeah for October 25th!!! I know that home seems like it will never happen, but I promise that it will and you will never be more excited to see your bed.


  4. Yahoo....we'll keep praying that all goes as planned. You are such a trooper, and so is Noah. I can't wait to see how much he has grown.

  5. This is my first time reading Noah's story, so I had to do a bit of catching up. What wonderful news about his progress. He is just adorable!

  6. I've stolen this photo twice...hope you don't mind!!lol!! He's just so stinkin' cute I can't stand it. Thanks for cyber-sharing him with me! lol!!

  7. Crys, you can celebrate my birthday and bring noah home!!! :)


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