Tuesday, February 8, 2011

Little Booger

Lots of good news.
Your surgery to reverse your ileostomy is scheduled for the March 3rd. Whoohooo!!! We are excited to see the end of the ostomy bags somewhere in sight. The night before last I actually slept over five straight hours, only to wake up with you saying "Mama" and finding your bag had exploded. Yuck.
You are still gaining weight. You gained another two pounds, which when you are only about 20 pounds is quite a bit of weight. You are now in the 26th percentile. Yeah! The doctors were very pleased with your progress on all levels. You are walking strongly (but still a little wobbly) and playing, laughing, smiling, and just being our regular WONDERFUL William.
You will go back into the hospital in a week or so for a separate out-patient procedure. They need to make sure your intestines are all cleaned out and ready to go for your surgery. They will also retest your iron count and do a biopsy. They want to rule out a certain disease that could be the cause of all this. It is called Hirschsprung's disease. In children with Hirschsprung's disease, a lack of nerve cells in part of the intestine interrupts the signal from the brain and prevents peristalsis in that segment of the intestine. Because stool cannot move forward normally, the intestine can become partially or completely obstructed (blocked), and begins to expand to a larger than normal size. The doctors are pretty sure you don't have this disease, mostly because it usually presents itself in infancy, but they want to rule it out.

Just a little side note. . .you are awake right now and making me laugh and want to pull my hair out all at the same time. You are pulling on my hands as I try to type or typing your own letters. And you are on your feeding tube too. This has become a bit of a challenge. You need to be fed through your tube three times a day and then all night. All of these feedings have become increasingly difficult to pull off because you are so darn wiggly! You are constantly on the move during the day, so Daddy or I , or even Olivia and Lance are constantly chasing you around with your pole on wheels that has your formula on it. You have learned to push it around a little, but you just aren't strong enough to push it and your attention span isn't long enough to remember that you are even attached to anything. And then at night you roll around and wrap yourself up in the tubing, so I get up at least a couple of times to reposition you. You are little jewel. I love you so much and would do all these irritating things for the rest of my life if it meant I got to have my little boy in my life, but that doesn't keep them from being irritating :) At least the irritation has a purpose, right?

We were visiting at another church building on Sunday and as we were leaving our family walked by a mother and her son. The son was probably about 3 years old. He saw Will and said "What's that?" about three times, referring to Will's feeding tube coming out of his nose. The mother didn't know what to say, so she said nothing. Finally, the boy said, "Is that a booger?" Our whole family just started laughing. The mother was mortified. I quickly explained to the boy what the tube was for. And then Lance said, "And he has an ostomy bag too!" The whole experience helped me to better understand how, in the future, I can interact differently with people and families of people with special needs. I don't mind answering questions about Will. I like to. I know people are looking and wondering, so I would love to satisfy their curiosity. I especially appreciate what children have to say. They are so innocent and never intend to offend or hurt. They just want to know why someone is different. If anything that whole experience gave us a good laugh :)

In all ways you are doing awesome. Daddy and I were talking about you the other night and saying how we can hardly keep from smothering you with love. We are so grateful to have you back. And you are back, boy! You are a full fledged toddler. Full of personality, persistence, and playfulness. So, for now we are trying to take it all in and enjoy the little time we have before you go back into surgery and our lives get a little harder for a time. I am so very grateful to see a kind of end in sight.

I love you, my little man. Be happy. Stay strong. And know you are loved.

6 comments:

  1. It was so wonderful to see you ALL at church on Sunday! I am so happy that this whole journey is going on the downhill slide for you all.

    I cannot believe his surgery is on March 3rd, must be the day. My mom has to have heel surgery and it is on March 3rd. We found out that my dad has prostate cancer and will have his prostate removed on...you guessed it, March 3rd. I am going to be a busy caregiver, but at least both of mine will be at SWMC. I am so happy that Will will be reconnected the same day...ahhhh what a releif!

    I cannot tell you how happy I am for you all!

    Casey

    PS...Dallin thought it was so cool to see Will's nose hose...I guess he doesnt see someone else with one. :)

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  2. Great news, Betsy! Hooray for progress!

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  3. Oh My Goodness! A Booger! That would be one big booger! I just love the way kids think! I am so excited for this final surgery. That is the end and the beginning isn't it? I just loved seeing William at church reacting like an other toddler. Put me down. Pick me up. Let me out. Give me that. I want to pick this up. It was very entertaining. You are blessed and we are blessed to know you. Take care!

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  4. Congratulations. Our prayers will continue to be with you.

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  5. Betsy,
    So happy for the update. Thank you for taking the time to write.
    Becca

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  6. Dearest Betsy ~

    What a wonderful gift you have been given, that for the rest of your life you will be able to relate to others with disabilities without feeling uncomfortable because of what you have experienced with William!

    He just keeps the blessings rolling in, doesn't he?!

    Know that you are loved, Janet

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