I cannot believe that it has already been one year since Max blessed us with his amazing spirit and joined our family. He is such a sweet little boy and has changed so much in one year. I'm so honored and proud to be his mom. Even with all of the things he has gone through this year - he is such a magical little boy, and we love him so much.
We have a fun filled weekend planned of day trips, time with friends and family and individual celebrations. We hope he enjoys the celebration of the first birthday as much as we will.
In the past few weeks, we have been extremely blessed by family and friends, and I just needed to recognize those who have been so instrumental in supporting us through all of this. Thank you to everyone who has donated on the GoFundMe site and to our family for setting that up - we are so blessed to be able to use this help toward travel, equipment, therapies etc. that may not be covered by insurance. Thank you also to our family who created the Miracle For Max blue wristbands - it is helping to spread awareness about this horrific disease and honoring our little Max.
Miracle Mile Deli has been including areas in their store to allow for donations to help with Max and create awareness for Krabbe - it has been incredible the amount of support we continue to receive from them!
We were also surprised by our neighbors - we seriously live on the best street ever - who came into our home when we were away and remodeled our bathroom - printed canvases of our family photos, cleaned our carpets, remodeled other rooms, landscaped the yard, got gifts for the kids and so much more. Coming home after an emotional week on the road to such an amazing surprise was just so fantastic. You hear in the news about all of the horrific things that continue to happen...well just remember that there is SO MUCH GOOD and thoughtfulness, healing and love in this world - we are reminded of this every day through the people that surround us.
We were able to go to Pittsburgh and meet Dr. Escolar and her team for the last week in Jan. She is just amazing and truly cares about her patients and families - when I finally got to meet her, I felt as if I were meeting a celebrity - so much excitement. I almost took a selfie with her but refrained. :-) She took her time with Max and we saw her every day we were there. We got more information here than we did 3 months in Phoenix. They have so much of an understanding and a comfort about it all. We have also been faced with one of the biggest decisions of our lives. I won't get into specifics just yet but everyone has been uplifting us to gain the knowledge to make this important decision for Max and our family. If you can too uplift us during this time it would be great.
After the many tests Dr. E. determined that Max has Late Infantile Onset- usually happens between 6 months and 3 years. His life expectancy is 3-5 years. You know, I don't really dwell on that number - the amount of years with him that are full of life and love are the most important to me - and it's only an average - greater things have happened beyond a number - HOPE. It was determined that Max is approximately at 4 months in terms of mobility and 8 months cognitively. We have increased his meds which have been making him coo and respond to us more - which has been fun. She also let us borrow a medical stroller which gives him so much more support and I have been able to put him down for 20-30 min at a time without him getting too upset (BREAK FOR MY BACK!!) which is great for him to gain a little bit of independence.
Other excitement - I got to listen in on a conference call about an AZ Bill to add Krabbe to the Newborn Screening - I know it is rare but it will definitely help other families who are going through this in the future and give them resources and opportunities sooner than we received them (or hopefully). They are in the process of researching the process and will be making a recommendation to the legislature in July - looking at costs and resources. I do hope that they provide the opportunity to test for this and help families early. It is truly the only way to help these families - early detection. It is really a shame that this cannot be federally mandated - each state has to fight for the ability to test for this disease.
Lastly - I have connected with so many amazing families that are going through this with their kids or are still in the community but have lost their kids to Krabbe from all across the United States. So many families are fighting for their kids and fighting to make the hope of saving other children's lives through newborn screening a reality in each of their states. Each family is just so open, willing to share, helpful, comforting and they provide their experiences. I'm so grateful that they have welcomed us into this community so that we can gain knowledge and hopefully in return, support those who need it as much as we do. All of this puts life into perspective; to enjoy the simple moments; don't let life pass you by; do what you love to do; surround yourselves with others who will make YOU better. We have found that we are a part of something greater and although tough, we are determined to make the best of it and continue to move forward as positively as we can.
Max shares his birthday with the same date that my mom passed 8 years ago. I still think of her so often. Sunsets, songs and little things remind me of her daily. Emotions are in full swing this year with everything going on and remembering her but I truly feel her spirit surrounding me and comforting me through it all. I trust that all will be well, even if I don't fully understand this path for our family or for Max. There has to be a greater purpose for it all - I just can't see why yet. It is the only way I know how to get through it all.
We will enjoy Max's birthday - celebrating his magical life and a true miracle.