Yes, on an average day he looks and acts like a normal little 2 year old, but really he is still pretty sick. How do you explain that to people who don't understand?
Right now we celebrate the daily things. Like Mack not screaming over little things or actually getting some sleep. We also celebrate the BIG things like his enzyme levels are drastically dropping!!!! He is on five different medications at this point and we are hoping to take out his PICC line next week at our appointment.
I haven't been posting much about his progress because we need to try and live a normal life. We have had some great friends stop by and spend their weekend and weekday nights entertaining us:) We even had a new babysitter come over on Friday night so we could get out for a few hours. The kids are still talking about her 2 LB dog-I will post those pics later.
The hardest part of all of this is trying to explain what is going on. We still don't have all the answers and we don't really know. It's been nice to have people around us that do try to understand and have gone above and beyond comforting us. Thank you!
It's also hard as a mother to go from what was before...
To what is now. It's still my baby, but the medications have made him put on an extreme about of weight. He doesn't seem to mind and seems to be much happier these days. I just feel he looks so different.