I was looking through Max's Facebook page the other day and I realized that there are a lot of pictures of me with Max or Max and Emma but not too many with his dad, Josiah. It is because he is usually the one behind the scenes taking the pictures or living in the moment with the kids and snapping the pictures of just the kiddos. He is my strength and my partner in crime. He wakes up in the middle of the night with Max so I can go to work the next morning but he still goes in to work himself that day. He is so loving with both kids - every time I see them interact - he is just the best dad - so attentive and fun and goes out of his way for them. More than I could ever ask for....I feel at times that I may jump in and get things done without sharing the credit but he is always working and making sure these kids are having the best possible life behind the scenes and I'm so thankful for all that he does for all of us - every day. I personally would not have the strength to do all of this without him and I wanted to share how amazing he is to me and the kids.
Max had a few really good days this week where we were able to put him down and he didn't scream. That is promising to see. He seems to be feeling better to the point that he isn't throwing up bottles and is cooing when I talk with him. He still has his ways of communicating too!
He is also now qualified for the state's Early Intervention program which will help with therapies and advice on how to better adapt with him in our home. This is great for us and will be a great resource going forward. We also applied and have been accepted for Max to be a part of Hope Kids which provides events to families of kids that are going through a lot medically. We are very excited to be a part of such an amazing group of people and look forward to attending their events. https://www.hopekids.org/
Thanks for the many suggestions to add to Max's bucket list. We started by taking him bowling with cousins and family. He kicked the ball down the ramp - not quite a strike but he got a few pins. The best part was that Emma let him take one of her turns and was so excited for Max to get the opportunity to bowl. It was a great day for all of us. I'm looking forward to many of these experiences to come. I try to fill our weekends with fun activities or visits with family and friends while we can still get out of the house with him - it is important - and we are taking advantage of the amazing AZ weather right now.
We have an appointment on the 16th to explore feeding tube options for Max. While he can still eat currently (other than the scary few days we had with him throwing up bottles) we are looking to be proactive and use it as needed but still allow him to enjoy some of his favorite tastes - sorbet and ice cream being among his favorites!! We'd rather do this on our terms versus making an emergency trip we don't need to explore. We are also in the process of getting him a "stander" to help his bones and joints grow in the appropriate ways since he will never walk. It will be interesting to see how he likes it - I hope that we are able to get this soon - we are still trying to find the best one for his size and get it ordered.
All of the continued support of the Pittsburgh Team and our pediatrician's office have just continued to be so helpful through all of this. They continue to go out of their way to get Max the care he needs and they are so supportive to our family. (Great Destinations is the name of our pediatrician's office - Dr. Prentice - for those parents looking for an amazing and supportive pediatrician locally).
February 28th was Rare Disease Day. One of the huge advocates for Krabbe kids created a video which honored a lot of the kids who are living with the disease or have gone through it. It really highlights a lot about Rare Diseases and also Krabbe - I highly encourage you to take a look. https://vimeo.com/120864507 . Awareness and education are key to create change! Images Magazine in north Phoenix also took the time to do a story on Max and our family to help raise awareness for Krabbe - you can take a look at the story here: http://imagesaz.com/blogs/viewBlog/3005/a-miracle-for-max-Barnett
Thanks for your continued LOVE, prayers and positive light toward Max and our family. We couldn't do this without you.