As usual...life has taken over, so I am sorry I haven't posted for a while.
My dad and stepmom came to visit last week, but I will save that for another post.
Right now I need to take a moment to let out my frustrations.
It has been 6 months since Evan was born, which also means 6 months of weighing his formula every day, weekly blood tests, weekly weight checks, constant diet changes, worries, and difficult feedings. Of course there are also good days that are all happy and smiles, but right now I am frustrated. Is it selfish of me to wish my child were "normal" and didn't have to have these tests every week? Is it selfish of me to wish that I didn't have to worry every time my child didn't want to eat a whole bottle or was extra fussy? I know it could be worse...especially since a former colleague of mine just lost his 16 month old son to leukemia. That is definitely worse.
What brings on my frustrations right now, you ask? Well...again...Evan's levels are elevated. His numbers are 800. What is most frustrating is that last Monday he was tested...we didn't get results until SATURDAY...5 days later! His numbers were elevated to 500 and the doctor didn't recommend a diet change. I should have gone with my gut and cut Evan off of protein for a day. Of course I am not the professional so I did as I was told and continued to feed him his protein and MSUD formulas. Then he gets tested this Monday, we get the reults today and he is now at 800...or was on Monday I should say. The Dr. recommended we lower the amount of leucine we give him by cutting some of his formula. I feel like it's not enough. I feel like his numbers have obviously been going up for 2 weeks now. Maybe 24 hours without protein would be better. We've done it before. I just don't understand how the decisions are made! I will definitely be asking for further clarification come Monday when we have our genetics appointment.
It's also frustrating because as a mother you want to protect your child from everything and I am doing my absolute best yet my son still ends up with elevated numbers. What more can I do? I barely leave the house unless I have to. I fight him to make sure he finishes his bottles so that he stays healthy. I love him and play with him and try to teach him new things every day. But still...it feels like nothing is enough. It feels like no matter how hard I try he just needs more. Today was hard. Evan cried...a lot! I thought it was his teeth, seeing as he has two of them coming in. Then I get the email telling me we need to do a diet change because his numbers are elevated. Now I don't know...was he screaming because of his teeth or because his leucine levels are too high? Was he fighting the bottle because it hurt his teeth or because his numbers are high?
I HATE MSUD! Yes..HATE! It sucks...it's completely unpredictable and so scary! We are talking to the geneticist on Monday about getting a referral to meet with the transplant team in California. Hopefully we can meet with them soon and get the ball rolling on a "cure" for Evan's MSUD. (At least that's what people in the MSUD transplant community call it).
If you made it through this post...thank you! Please say an extra prayer tonight for us that Evan's levels drop quickly! I want my happy baby back! :( And please, say a prayer for angel Micah who was taken from us too soon! I think of him and remind myself that no matter what struggles I am facing with Evan, we are still blessed to have him here. Things can always be worse...even when it doesn't feel like it.
