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!
