Ordinary Miracles

I've been trying to write this blog post over the course of four days - but more and more amazing things keep happening - so I've edited this many times.  Sorry if it is a bit longer than normal - there is just a lot going on.

After connecting with some of the other amazing  Krabbe Families, a few suggestions came to start a Facebook page to help spread awareness - so being that I am very familiar with social media, through my work, I decided to launch Miracle For Max.  I'm absolutely overwhelmed by the response - and it is all due to other Krabbe Families sharing the page with their own supporters.  Thank you for taking the time to follow our story...for all of the well wishes, prayers and support.  We are in the earlier stages of this disease from the looks of it, and we are grateful to have such a strong "team" uplifting our family in this time of need. Thank you.

I also wanted to share a few other pages of the families who have reached out or we've been following (I know I'm missing quite a few in this list).  Please take the time to say a prayer for each of these families and their little ones.  They need strength and support just like we do:

Hope for Hannah - Please uplift this family who just lost their sweet Hannah Bear to Krabbe on Dec 28th.  They helped in getting Krabbe added to the New Born Screening in PA.  Hannah's mom has just been awesome to me - even with everything she is dealing with right now.
Addilyn's Journey of Hope - A brave little girl whose health has been up and down recently - she needs extra strength and seems like an absolute sweetie.
Love for Lily -  A little girl out of MD who has had a stem cell transplant procedure and is doing well. She continues to provide hope for many who have this disease or who are diagnosed.
Baby Reesa Foundation -  This family is in our hometown who is pushing for NBS testing in AZ. They have a bill through to the decision makers. They also just recently welcomed a baby brother for Reesa who is Krabbe free!
Marshall's Mob - Promoting NBS awareness nationwide but out of OR.  Marshall has Krabbe - his brother Michael was tested for Krabbe and had a transplant at birth - so far no signs of Krabbe. Just another reason to get Krabbe added to New Born Screening programs.
Hope for Blaine - A little boy from OH who was diagnosed at 16 months - however it took awhile to be diagnosed (similarly to Max). He is such a cutie.
Embracing Emma - a little girl diagnosed but went through a stem cell transplant in OH and is doing really well. Another reason to get that New Born Screening in each state.
Miracles for Mabry Kate: A family out of TN with little girl Mabry Kate - this family needs lots of prayers and support.

Thank you for taking the time to support them as you are for us.

An update on Max.  After connecting with a lot of families, we are in the process of trying to get out to Pittsburgh to meet with the doctor who is the expert on Krabbe, Dr. Maria Escolar.  So many of these families reached out and asked...have you seen her yet? Apparently this seemed the right direction instead of just waiting for test results and DNA sequencing to come back so I reached out last week.  I'm hopeful that we can find out more on Max's current condition, options and how to help with some of the things that make him very irritable.  It is a shame that the doctor's at PCH didn't even provide this information to us.  We could have been on our way to getting more information by now.  I was told they would reach out to find medicine etc.  that was working well for these Krabbe kids but they hadn't heard back from the doctor (and I believe they said they were going to contact Dr. Escolar) - well that was a month ago and haven't heard anything - let alone get a call back. So I reached out on my own and within ONE DAY, I got a response and a lot of reassurances from Dr. Escolar's team. It just shows that these kids are stuck in a medical system that thinks there isn't much hope - keep them comfortable and send them home to die. It sounds harsh - but that was the news and the message that we received from the doctors who diagnosed him.  Time is of the essence with this disease and it upsets me that all we continue to do is wait for these doctors to get answers. I can't wait anymore - we are pushing everywhere we can to get some more info. I know I'm venting a bit here - but I think it is for good reasons.

I do have to say and highlight that even though our pediatrician has never treated a patient with Krabbe - she is our advocate and is doing everything she can ( bugging everyone she can) to help us get answers - I'm so incredibly grateful to have her on our side and so fortunate to be linked with her. She wants the best for us and has just been amazing. I'm hopeful we get an update next Monday from Dr. Escolar's office on when we can head to PA (doctors actually take vacations?!? We caught them on a bad week for us with them being out) - but we are ready to go when we get the green light.

In a previous post, I mentioned that maybe we shouldn't advocate for early New Born Screening based on the doctor's message to us who diagnosed Max.  There may be research out there to tell me otherwise - but I have changed my tune significantly.  There are many cases where Krabbe was detected early and there was an option for a stem cell transplant with success! If we were told early that Max had Krabbe - our story may be very different at this point in time.  Why not test if there is treatment?!?! At LEAST give us the option and the information so we can make a decision if he is diagnosed!! The Krabbe families here in AZ have already gotten a bill passed to at least have the Director of Health take a look to see if they will add Krabbe to the NBS - I have since written an email with the same message - add Krabbe to AZ NBS and told them our story - I hope it helps. There should really be early testing in every state - especially since there has been a lot of success in these stem cell transplants so far.  I'm hopeful they will include this in our state in the near future.  It shouldn't matter where a child is born to have the option of transplant.  I know it is a rare genetic disease, but time is of the essence and if not caught early there is essentially no hope.

Max ended up having an ear infection which has since been treated, and he has been a much happier guy the past few days.  He's been giggling more and has more energy. It has been great for us to enjoy these simple moments with him.  With our daughter, Emma, and Max we've been dancing, singing and having lots of tea parties - time that is well spent with our kiddos.

The hardest part for me to contemplate is how Emma will handle all of this (she's making a picture for Max in this photo).  It will be so extremely hard for Josiah and I but for a little girl who loves her brother so much - I just have trouble writing about it. We passed a car crash on the road the other day on our way home and Emma asked me what happened.  I told her someone was probably going too fast and needed to slow down.  I hoped everyone was OK and that's why we have to be safe in the car and wear our seat belts, etc. etc.  She told me the crab got them.  I had no idea what she was referring to, so I asked her to repeat herself and she said the same thing but added, "The crab got them, like it got Max."  I was brought to tears. She's only 2 1/2 but clearly understands more than I think she does. I worry the most about her through all of this. Her "normal" has certainly been taken away, although we are trying to do everything we can to keep things going for her. We were able to escape, the three of us, to Disney on Ice this past weekend.  While it would have been great to take Max, it was important for Josiah and I to give Emma that one on one time because there hasn't been as much lately. It was a great time for all of us and great for Max to spend time with some other family members.

I ran across a song after we watched Charlotte's Web a few weeks ago (movies and music have been favorites of both kids as of recent) and it made me realize that I need to enjoy the Ordinary Miracles in life.  The song is called Ordinary Miracle by Sarah McLaughlin. The lyrics at one point say: 

Life is like a gift they say. 
Wrapped up for you every day. 
Open up and find a way. 
To give some of your own.

I'm trying every day to give some of my own.  And I'm enjoying these "ordinary miracles" that are given to me like smiles, play time, coos, and cuddle time to name a few.  I'm still waiting though for my EXTRAORDINARY MIRACLE.  It is just hard to stay hopeful at times.   I need to stay positive and continue to hope and pray for that miracle for Max but I'm also keeping my guard up - I can't be torn down again. This may be such a horrible outlook on all of this but it is my reality and some of the awful thoughts I deal with daily.

Thank you all for your continued support, love and strength.  You make us a better and stronger family each day.  I personally am humbled by all of this.  Max is truly here for a reason and I'm glad you are all a part of it.

~Allison

#MiracleForMax