Evan in park
Friday, September 28, 2012
Family Photos.....with a toddler! :)
We went to a local park and took family photos this weekend. It was lots of fun.....and stressful! As anyone who has ever been around a toddler for more than 5 minutes can tell you, they don't sit still! Saturday was no exception! Evan wanted nothing to do with the camera and everything to do with the grass, sticks, rocks, and anything else he could get his hands on. Here are a few pictures from our photo shoot for you to enjoy! As you can see, Evan is doing well! Happy as a clam and curious as ever!
Tuesday, September 11, 2012
6 months ago
In just 1 week, Evan will be 6 months post transplant! I cannot believe this time has gone so quickly. To think of our lives just 6 months ago brings back so many emotions.
I remember spending my days worrying about whether or not Evan was going to eat and how long each bottle of formula was going to take for him to finish. I would do anything and everything I could to make sure he took his formula. Taking his formula meant staying out of the hospital and preventing potential brain damage as best we could. I spent a lot of my days at home because it was just too hard to stress about him eating and actually go out and do anything. My closest friends can attest to seeing me struggle to force Evan to finish bottles of formula and measured containers of baby food.
Just 6 months ago everything I put into Evan's mouth or offered him to eat was carefully calculated and weighed on a scale. I didn't just offer him a bite of what I was eating...I couldn't. It had the potential to mess up his levels and put him into the hospital and cause brain damage. Just one bite! How scary is that?! And that doesn't include the fear and frustration that day to day stress that could also have messed up his levels. Evan has spent the last week teething. He is cutting his canines and they have really been bothering him! 6 months ago if he was teething I was watching for any potential sign of elevate leucine levels. Now I am doing everything I can to just distract him from the pain so he can have a good day (and so I can have some sense of sanity in my house).
Here we are 6 months later and today we are going to the aquarium and the botanic gardens with friends. I am not worried about whether or not he will eat enough. (Although he is a typical toddler and is super picky with eating. Sometimes I wonder how he grows with the little bits he eats). We still worry about him catching a cold or getting sick as his meds are immunosuppresants. This means he can't fight off viruses and bacteria as well as a "normal" child. We do have that worry, but we also know that viruses and bacteria can be caught quickly and can be cleared with medications or other treatment. Before his transplant, we just hoped and prayed he got through them quickly so that he didn't end up in the hospital and his levels didn't get too out of wack.
6 months ago I also spent much of my days wondering when and if we'd get the call. We were told the wait would be about 3 months but most likely not more than 6. We were almost at the 3 month waiting point. I am still in awe that the doctors were so right about when we would get "the call". Almost 3 months to the day from when Evan was listed we got the call that they had accepted a liver for him. That was the end of one journey and the beginning of another.
People still ask about our decision to transplant and how we feel about that decision. I can honestly, without a doubt, tell you that it was THE BEST decision we could have made for our child! We have protected him from the very scary and negative effects of the VERY unpredictable MSUD! We have given him the most "normal" life we can offer him and he is flourishing because of it! Evan doesn't have a lot of words, but he can tell you just about any animal sound you ask him! :) He runs and climbs! He eats what he wants (if he wants to eat). He is a typical toddler in every sense of the word! I cannot guarantee that I would be saying all of those things if we had not chosen to transplant. I cannot tell you if Evan's brain function would be normal or if he would have gotten sick and lost some of his skills. I cannot tell you if he would have been hospitalized with elevated levels (which he most likely would have been at some point...especially with as much stress as teething has been causing him). For us, and for Evan, transplant was the best decision!
6 months....Sometimes it seems like an eternity ago and others it seems like yesterday! For us, 6 months has been such a time of change! :)
I remember spending my days worrying about whether or not Evan was going to eat and how long each bottle of formula was going to take for him to finish. I would do anything and everything I could to make sure he took his formula. Taking his formula meant staying out of the hospital and preventing potential brain damage as best we could. I spent a lot of my days at home because it was just too hard to stress about him eating and actually go out and do anything. My closest friends can attest to seeing me struggle to force Evan to finish bottles of formula and measured containers of baby food.
Just 6 months ago everything I put into Evan's mouth or offered him to eat was carefully calculated and weighed on a scale. I didn't just offer him a bite of what I was eating...I couldn't. It had the potential to mess up his levels and put him into the hospital and cause brain damage. Just one bite! How scary is that?! And that doesn't include the fear and frustration that day to day stress that could also have messed up his levels. Evan has spent the last week teething. He is cutting his canines and they have really been bothering him! 6 months ago if he was teething I was watching for any potential sign of elevate leucine levels. Now I am doing everything I can to just distract him from the pain so he can have a good day (and so I can have some sense of sanity in my house).
Here we are 6 months later and today we are going to the aquarium and the botanic gardens with friends. I am not worried about whether or not he will eat enough. (Although he is a typical toddler and is super picky with eating. Sometimes I wonder how he grows with the little bits he eats). We still worry about him catching a cold or getting sick as his meds are immunosuppresants. This means he can't fight off viruses and bacteria as well as a "normal" child. We do have that worry, but we also know that viruses and bacteria can be caught quickly and can be cleared with medications or other treatment. Before his transplant, we just hoped and prayed he got through them quickly so that he didn't end up in the hospital and his levels didn't get too out of wack.
6 months ago I also spent much of my days wondering when and if we'd get the call. We were told the wait would be about 3 months but most likely not more than 6. We were almost at the 3 month waiting point. I am still in awe that the doctors were so right about when we would get "the call". Almost 3 months to the day from when Evan was listed we got the call that they had accepted a liver for him. That was the end of one journey and the beginning of another.
People still ask about our decision to transplant and how we feel about that decision. I can honestly, without a doubt, tell you that it was THE BEST decision we could have made for our child! We have protected him from the very scary and negative effects of the VERY unpredictable MSUD! We have given him the most "normal" life we can offer him and he is flourishing because of it! Evan doesn't have a lot of words, but he can tell you just about any animal sound you ask him! :) He runs and climbs! He eats what he wants (if he wants to eat). He is a typical toddler in every sense of the word! I cannot guarantee that I would be saying all of those things if we had not chosen to transplant. I cannot tell you if Evan's brain function would be normal or if he would have gotten sick and lost some of his skills. I cannot tell you if he would have been hospitalized with elevated levels (which he most likely would have been at some point...especially with as much stress as teething has been causing him). For us, and for Evan, transplant was the best decision!
6 months....Sometimes it seems like an eternity ago and others it seems like yesterday! For us, 6 months has been such a time of change! :)
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