Evan in park
Friday, November 16, 2012
A day in the life...
Life has been so much more "normal" lately. A typical day consists of enjoying Evan by going to story time, the park, the zoo, or just having fun at home. We get out as much as we can. Yesterday we ran errands, went to music and movement class at the library and the park. It's so nice to be able to enjoy being a mommy rather than spending my days strain per every little thing! It doesn't mean I don't worry or stress about things. It's just a lot less than before!
Monday, November 5, 2012
The tables have turned...
Evan is now 7 and a half months post transplant and doing well. We have had little bumps, but nothing that couldn't be handled fairly easily. Evan's amino acids are good and his liver functions are beautiful! The stresses we have now are nothing like the stresses we had pre-transplant. We still stress about Evan eating, but that's because he is a picky toddler and it drives us crazy! When the stress of him not wanting to eat lunch is just too much we don't have to fight him and make him eat like we did before transplant. He doesn't have to take "x amount of formula" and "x amount of protein" to stay healthy. Now he takes his meds twice a day and eats what and when he wants to (at least what we are willing to offer him). It's amazing to look back on what days were like before and see how different they are now. We are so blessed and have come so far in Evan's 19 month life! :)
Now to the title of this post...the tables have turned...
Instead of me calling, emailing, or facebook messaging families asking for support and help with managing Evan's MSUD and the stress... I am the one receiving phone calls. I have spoken with many families who are just learning to manage their children's MSUD or some who have been doing so for longer than Evan has been alive. One family has a young child who is very similar to Evan in that the child is already refusing to drink the formula even when amino acid levels are normal. By sharing our experience with this family, I am hoping they realize they are not alone and that there is a possible answer (this family would like to pursue liver transplant from what they have said). There is another family who used to help me because their child is older than Evan. The mother would listen when I was frustrated and struggling to get Evan to eat. She was there to listen when Evan's levels were elevated or when he was in the hospital. Now she is pursuing liver transplant for her child and I am there for her. I have explained to her the process we went through, the transplant experience, the recovery, and what our life is like now. I feel like I am paying forward what other people did for us when we were struggling to manage Evan's MSUD. It's a good feeling, but at the same time there is a level of sadness I feel for these families. I hate that they are going through this struggle. It's not something I would wish on my worst enemy. But, I am thankful that I am able to offer them some support and I hope that they feel like they have hope! I pray daily for all those effected by MSUD that they stay healthy and persevere in managing this ugly disease.
If you are reading this because you have a child with MSUD and are looking for help, please don't hesitate to contact me or ask for help. There is a FB page for families with MSUD. That's how I found my support! Remember, you are not alone!
Now to the title of this post...the tables have turned...
Instead of me calling, emailing, or facebook messaging families asking for support and help with managing Evan's MSUD and the stress... I am the one receiving phone calls. I have spoken with many families who are just learning to manage their children's MSUD or some who have been doing so for longer than Evan has been alive. One family has a young child who is very similar to Evan in that the child is already refusing to drink the formula even when amino acid levels are normal. By sharing our experience with this family, I am hoping they realize they are not alone and that there is a possible answer (this family would like to pursue liver transplant from what they have said). There is another family who used to help me because their child is older than Evan. The mother would listen when I was frustrated and struggling to get Evan to eat. She was there to listen when Evan's levels were elevated or when he was in the hospital. Now she is pursuing liver transplant for her child and I am there for her. I have explained to her the process we went through, the transplant experience, the recovery, and what our life is like now. I feel like I am paying forward what other people did for us when we were struggling to manage Evan's MSUD. It's a good feeling, but at the same time there is a level of sadness I feel for these families. I hate that they are going through this struggle. It's not something I would wish on my worst enemy. But, I am thankful that I am able to offer them some support and I hope that they feel like they have hope! I pray daily for all those effected by MSUD that they stay healthy and persevere in managing this ugly disease.
If you are reading this because you have a child with MSUD and are looking for help, please don't hesitate to contact me or ask for help. There is a FB page for families with MSUD. That's how I found my support! Remember, you are not alone!
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! :)
Wednesday, June 27, 2012
3 months and 9 days
Evan is now 3 months and 9 days post liver transplant. His liver function numbers are beautiful, he is eating like most typical toddlers (what and when he wants LOL), and is active and happy as can be! I cannot believe how far he has come in such a short amount of time. There was a time when I could never imagine my child eating even a bite of meat or cheese and today he eats turkey and cheese sandwiches! :) We are so blessed!
Monday, June 4, 2012
Prayers for other families
I want to ask you to pray for another family of which we have recently learned. Their little girl, Riley, has had her 3rd liver transplant in a month and is still not doing well. Her ammonia levels are high and there is fluid in her belly. She was born with biliary atresia which is one of the most common reasons for liver transplant in young children. Please pray that the doctors can determine why things are not going as they'd expect and that they can get her on the road to recovery. This family has been through so much and they are all fighters.
Here is a link to their story: https://www.facebook.com/RileyLarson.BAAwareness
I'd also like you to please keep a few names of other families in your prayers. Our friend Amanda Walton is awaiting liver transplant for her MSUD. She is in her 20s and is tired of living with MSUD. She wants some sense of normalcy and has been waiting for a new liver for some time now.
Another friend of ours, Mackenzie is also in need of prayers. She is 13 and has been struggling so much with her MSUD that she has chosen to be listed for liver transplant in Chicago. Her mother and I have talked a lot over the last year or so and I know her mother is also struggling with this. They are definitely ready to get "the call" and move forward to the next stage of their lives..a life without MSUD!
Here is a link to their story: https://www.facebook.com/RileyLarson.BAAwareness
I'd also like you to please keep a few names of other families in your prayers. Our friend Amanda Walton is awaiting liver transplant for her MSUD. She is in her 20s and is tired of living with MSUD. She wants some sense of normalcy and has been waiting for a new liver for some time now.
Another friend of ours, Mackenzie is also in need of prayers. She is 13 and has been struggling so much with her MSUD that she has chosen to be listed for liver transplant in Chicago. Her mother and I have talked a lot over the last year or so and I know her mother is also struggling with this. They are definitely ready to get "the call" and move forward to the next stage of their lives..a life without MSUD!
As always, please continue to pray for all the families and children with MSUD. It's a daily struggle for many of them.
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