2 weeks on ACTH

Some of you have asked for an update on Mason and how we're doing. My goal in all this uncertainty has been to try to be positive and optimistic and, because of all your prayers, it has thankfully been the norm for us to feel this way. As you can imagine there are some tough days. Randomly some days I'll get emotional when I see little boys running around or a baby holding her head up or a baby drinking out of a bottle or other things "normal" babies or children do. Carly had a basketball game a few weeks ago and halfway through I started crying and I had to take Mason out of the gym. I saw so many little boys playing basketball and it was really hard for me to watch.  When we found out we were having a boy I was so excited for Casey to have a little boy to play sports with. I know he can play with our girls too but I felt a big sense of loss for this part of Mason's future we were looking forward to. We don't know if Mason will be able to play sports, or be able to talk or be able to do anything normally. That has been the hardest part of all of this. People have asked when Mason won't need to have a feeding tube anymore.  This is also an unknown. We wish he didn't need one but we're grateful he has one so he can grow. Our answer to a lot of questions is the same, we just don't know yet.

Since Mason has been on the ACTH injections for the past 2 weeks life has been pretty hard for him which has made life hard for us. ACTH steroid therapy for Mason is 4 weeks long; 2 weeks of twice daily high doses and then 2 weeks of cutting down on doses and weaning him from it. We have gotten over the anxiety of having to give him the shots it's just the horrible side effects of the ACTH we're dealing with now. ACTH makes Mason really fussy and seem in a daze.  He doesn't full on cry but he moans and groans all day and night. His first few nights home from the hospital a few weeks ago he didn't sleep longer than a few 30 minutes stretches and the rest of the night he moaned.  It is the saddest thing ever to see your child uncomfortable and in pain and not be able to do anything about it! A few days last week I just turned up the TV and  radio really loud for some relief from his groans. The ACTH also raises blood pressure and blood sugar so we have a home health nurse that comes to our house 3 times a week to keep tabs on them.  I have been emotionally and physically drained. I wish so badly that my sweet little boy didn't have to go through this! On the other hand I have still been able to smile and laugh and do everything that I need to do as a mom (moms always find a way to do what they need to do!). 

 We don't have any answers to the cause of the seizures or a prognosis yet. In many children with infantile spasms the cause is unknown and prognosis is unknown as well. Some kids may respond well to treatment and then continue to develop pretty normally. On the other hand, some children with infantile spasms will grow up severely delayed. Genetic testing results will slowly start coming back to us and hopefully those will give us some answers as to why Mason is having seizures and what the future may hold to him. Thank you again for all your prayers and sweet messages and offers to help out. You all have been answers to our prayers!