Hello, my sweet William. I miss writing to you. I don't miss the solitude of a hospital room, but I do miss the quiet time to write and reflect on life and miraculous you. But, I am so deeply grateful that I have the chaos of our home and life. I find a deep sense of joy by just simply watching you walk (and try to run) throughout the house. The littlest thing makes my heart swell with gratitude. The other night all five of us were sitting on Olivia's bed reading books, getting ready for bed. I took a mental picture. It's so good to be together. It's so good to be healthy. It's so good to be happy. We are happy. I know that Daddy and I have never experienced the fatigue that we feel. And I think we all feel the stress of your illness. But we are together and so very happy to be.
So, updates. . .We went to the hospital on Friday for a few pre-op things. The did a barium enema. That means they put special fluid up your rectum and then took an x-ray of your large intestine. They did this in order to make sure your intestine is all clear, that there aren't any further blockages. All was clear. They also did a biopsy for Hirshsprungs disease. We will get those results on Tuesday. You did pretty well through it all. They had to give you some Versed to calm you down. They had to poke you about five times until they found a good vein for an IV. Then they put you in a "Deep sedation" so you would hold still for the enema and x-ray. You weren't happy to be there, but we survived.
As we drove home together I realized that we have less than two weeks until your surgery. I am very anxious for you to be put back together, but I actually got a little emotional thinking about the whole thing. I don't want our family to be split up again. Even though it will be better than our last visit to the hospital it is still the hospital and there are still risks. Thank goodness for prayer. It is bringing me a lot of peace. And I know we are on the flip side of all this. I know that it could be worse. I know that we are so very blessed. I am so very grateful for all of that.
I have been telling everyone that our William is back. You are who you used to be before all this, except you have a nose tube and an ostomy bag. . .but not for long. It is wonderful. It is a miracle. It is an answer to our prayers. I taught a Sunday School lesson today at church about the miracles Jesus performed while on the earth. In the lesson it talked about all his miracles, but then also said that there are miracles today too. You are one of those miracles, little man. You have shown us all that God is real and that he loves us and will comfort us and watch over us. He may not always take away painful experiences, but he will always bring peace to us and help us grow and learn from our trials. I feel blessed. I feel loved. Know that you are such a blessing to me and you are loved by so many. I probably won't write again until we are back in the hospital. . .so, until then, play hard, stay healthy, and enjoy your brother and sister ;)
xoxoxoxooxoxoxoxoxoxo
Sunday, February 20, 2011
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.
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.
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