"All of the world is full of suffering. It is also full overcoming." ~Helen Keller



Max in November 2014 during his hospital

stay to find out what was going on.

Have you ever been inside a Children's Hospital? I hadn't before we went through everything with both Emma and Max last year with a hospital stay and multiple appointments/tests.  We would sit in the waiting room and it seemed as though everyone was avoiding making eye contact with one another.  You have no idea what they are going through.  Some of the children were severely disabled...others looked normal but you had no idea why they were there. Were they waiting on test results? Did their child have a life threatening illness?  Were they just taking precautions? It is an uncomfortable environment to be a part of if you are new to it - honestly I don't know if it gets any better...there is no getting used to it.  

The one part that stands out is how many families, kids, and parents are there on a daily basis for routine appointments or tests.  It hurts my heart to know that so many families continue to struggle with these challenges- you never think it could happen to your family, but it could happen to anyone.  Every time I went to Phoenix Children's Hospital, it was packed. One time I was waiting for a genetics appointment in their waiting room and a mother was 25 minutes late because of traffic (it was a brutal day...lots of accidents and rush hour...we were struggling to get there ourselves)...the lady at the front desk told her that she was past her appointment time, and she literally almost started crying and was begging and pleading for them to take her appointment. They eventually did - I felt like I should have given up ours (I wouldn't have because we needed answers too - but I really felt her sense of worry and frustration). You wait for weeks/months to get an appointment to find answers for your children...having to wait another few weeks or months would be awful.

Max right after diagnosis December 2014. He couldn't sit by

himself but he could turn his head and laugh and grin.

The other thing that bothered me was finding out that not a lot of doctors have ever heard of Krabbe.  How is that even possible? Well I can guarantee you that every doctor we see is getting a crash course from us going forward!! After learning that Max had Krabbe, we still went in for heart tests to make sure multiple things weren't taking place (and he was fine on that front).  But just in talking with some of the nurses and technicians and explaining his disease to them, they had never heard of it and were saddened and shocked by what our future held. Max would be screaming through the tests - I just told them to get through the tests even though nurses and technicians were uncomfortable with his crying and shocked that I couldn't soothe him (they would tell me to feed him - or try music or toys or anything)...the more breaks we had the more he would cry. I told them that the irritability was part of the disease AND he was scared on top of it (and he wasn't on any of the meds that help with the irritability yet).  They almost stopped the heart tests multiple times because they thought they were hurting him or couldn't stand to hear him cry - I told them to do it anyway - that we needed the results and I knew why he was so irritable - how did I know more than them at that point?!?  The fact that they had no idea what Krabbe was...well, it scared me...I was scared for us...for future families. Do you know that unless you see the right doctor - this could be misdiagnosed or a mystery for months?  It was up to us to find a solution.  It took us a month to diagnose Max after all of this started and another month and a half to find the right doctor who specialized in this disease and was the first who provided any answers or real help.

After learning more about rare diseases - I can see why the Children's Hospital is unfortunately so crowded and also why it takes so long to find a diagnosis (if they can). I also understand why doctors are nurses aren't well versed in these rare diseases.  Along with all of the more common disorders and diseases with children - there are so many rare diseases such as Krabbe.

Did you know:

• There are approximately 7000 different types of rare diseases and disorders, with more being discovered each day.
• If all the people with rare diseases lived in one country, it would be the world's 3rd most populous country.
• 80% of rare diseases are genetic in origin and thus are present throughout a person’s life even if the symptoms do not immediately appear. (Allison's side note - you may also have had this gene in your family for generations and been carrying the disorder without even knowing it - that's what happened with us)
• Approximately 50% of the people affected by rare diseases are children.
• 30% of children with a rare disease will not live to see their 5th Birthday.
• According to the Kakkis EveryLife Foundation, 95% of rare disease have not one single approved drug treatment.
• 350 million people globally are fighting rare diseases.
• Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.

*You can learn more at ismrd.org or rarediseases.org

However - after all of this disheartening news - there are break-throughs being made every day.  There are kids who are transplanted before Krabbe symptoms appear who are living a relatively normal life today.  That is why Newborn Screening is so important! Anna's Law just got passed in Kentucky this week and just needs the governor's signature to be put into action.  There was a great piece done by local media and also ABC national news on the Wilson Family in Oregon who are trying to get a bill approved for their state (their son Marshall has the disease and when their younger son Michael was born, they asked for the Krabbe tests and were able to transplant before symptoms appeared - he is doing awesome today).  There was also some amazing coverage on Krabbe on ABC national news talking about Zach from England and his battle with the disease and bucket list that they are trying to get accomplished.  We are doing something similar for Max as I mentioned in my last post.  The media and awareness is what we need.  When Newborn screening has to be determined at a state by state level it is a struggle, but I feel like momentum is starting to happen.  Unfortunately, although I am still new to this "Krabbe Family", I feel that more and more families are being introduced on a weekly basis. They get flooded by the Krabbe community on what to do next - because we all know that is their best chance.  I'm hopeful that in July, AZ will get smart and include this in the screening.  I just would hate so much for another family to have to endure all of this.



I found myself staring at Max the other night and just started crying as he slept in my arms.  All of the "what he won't ever be able to do" thoughts started filling my head.  I try to block this out all the time. It is so hard to keep the thought of the future out of my head at times.  I kept thinking about how I didn't want to put him to bed - just want to hold him forever because I don't know how long I will be able to do so. Dark thoughts like this enter my mind daily but it is reality.




A high school friend of mine (we still keep up on Facebook) posted this the other day, and it was perfect for everything I had been thinking about.

"All the world is full of suffering. It is also full of overcoming." ~Helen Keller



Max - March 2015. Cannot hold

his head and needs to sit propped up.

He coos but smiles are hard and

laughing is gone.

Wow - while Max may never get to do a lot of things WE had dreamed he may do - there are a lot of things that he can still overcome and accomplish on a daily basis.  When he hasn't smiled in awhile - it is an accomplishment for the day when I see it land on his face.  We can all accomplish and overcome things we face in our daily lives and see things we may not normally recognize through this little boy's life...simple things that we can all learn from and strive for to be better in our own lives. We can overcome future suffering - and expand this newborn screening throughout the country, if not, the world. We need to find the positive in all of this and continue to charge ahead. 

It's hard to do, but when I get these messages of encouragement, it helps me wake up in the morning...it helps me function...it helps me move forward.

Thank you for your love, your messages, your gifts, and your kindness.  We couldn't get through this without your continued support.
~Allison

Love

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.

~Allison

It is not about what is lost ~ it is about what still remains

It has been awhile since I've written - life has gotten in the way - which is a very wonderful thing. We've had lots of cherished visits from friends, weekend trips to the park or have been out front playing with the neighbors over the past few weeks. Josiah and I have recently faced some tough things emotionally but are moving forward and have leaned on each other for support.

Max had a rough few days not keeping his bottles down and has just been a bit more fussy than usual all weekend.  I remind myself - wouldn't you be grumpy if you weren't feeling well either?!? Hopefully this was just a small stomach bug that will pass and we will get "Max" back soon.

We've unfortunately both noticed some decline in Max since our trip to Pittsburgh - which was already a month ago.  It is harder for him to smile - when we get a laugh, coo or smile - it is the greatest moment, because we don't experience this as often - Max was the most smiley and happiest baby so this one is so tough. I read one of my first blog posts with me singing the alphabet to Max and at the end asking if he wanted me to sing again and he'd coo in response - I haven't gotten that in awhile from him - yesterday I tried it and didn't get any response. It's heartbreaking how fast he continues to lose certain things - this disease affects both the brain and the nerves - his brain is the most affected right now - he has moderate damage (mild, moderate, extreme scale) and I'm starting to notice he can't comprehend as much as he once could...OR maybe he just can't express what he still understands.  A few months ago he had a bit more physical strength; he was really aware of things and would follow things with his eyes - he could comprehend somewhat; he loved Mickey Mouse cartoons - they caught his attention with the music, colors and fun shapes. Now we cherish the days - moments - where he gives any kind of response.  Different positions are very uncomfortable for him...he also is more intrigued with lights and fans...more so than his favorite shows where he could learn more - he also looks past things...tougher to focus. We were able to borrow a kid cart (medical stroller) which in the beginning worked well - now it is hit and miss with him.  He just likes being held, comforted and consoled - I have to admit while it does a number on my back and there are moments I want to put him down to cook dinner or clean the house - I'm enjoying these moments to be able to hold him close and other things can wait at this point in time.  When I get trapped in these moments where I am sad about what he is missing out on...catching myself focusing on what he can't do and what has been lost, I think of something that I heard a few days ago on a reality show (yes I admit - I'm a reality junkie - a guilty pleasure)...the Celebrity Apprentice...Leeza Gibbons was talking about her charity Leeza's Care Connection which honors her mom who faced Alzheimer's. Her charity helps families who are dealing with Alzheimer's Disease.  She made a comment that stuck with me...something along the lines of: "We have to remind the families that it's not about what is lost, but what is still there.  You have to embrace what they still have and enjoy those moments"....I'm trying...I'm really trying...

I am also still very confident that there is a greater purpose for all of this...no matter how hard it is to believe.  He is in our lives for a reason.  He is our amazing son - and we love him unconditionally
just the way he is.

We also just recently watched The Theory of Everything with highlights the life of Stephen Hawking - what an amazingly brilliant person who has lost so much to ALS but is determined to make a difference and push forward and he has lived past what anyone could have ever predicted.  It was a difficult movie for Josiah and I to watch - ALS seems very similar to Krabbe in that so many functions are lost - however the brain remains in tact...not so much the case in Krabbe. How I hope that Krabbe gets added to our Newborn Screening tests here in AZ and all across the country - it is really the only hope any family has with these kids.

Max loves being outside.  Yesterday he was so upset in the morning and we just couldn't calm him but we still took him to an amazing event organized by our family: Yoga in the Park (last Sunday of every month we get together).  He instantly calmed down the moment he was held and outside.  He loves to look at the sky and the clouds.  Always looking at the sky... He became fussy later in the day and so we went out in our backyard and again instantly calmed down - got to touch the leaves, feel the breeze...enjoy nature. And just gazing at that sky.

Emma absolutely loves her brother - we were at a Valentine's themed play date a few weeks ago and Emma was making sure that Max had Valentine's cards, that he got candy too, that he got to experience everything that she did and she made sure that no one left him out.  She continues to amaze me every day and helps us so much when we can't grab things - she helps. In her eyes - Max is perfect, normal and her brother - she protects him and loves him unconditionally.  I continue to learn a lot from their bond and their love every day.  When she gives him a kiss - while Max doesn't always smile and can't express as much any more - you can see the smile in his eyes - he loves her as well. 

We did get some good news after testing Emma - she doesn't have Krabbe- but she is a carrier of the disease (much like Josiah and myself).  If she has kids one day, she would have to get her partner tested - if he also is a carrier, they would have to be careful because they would have a 1 in 4 shot in giving their children Krabbe...if her partner isn't a carrier then their kids will be fine...but she could pass the gene to her kids and they may also be carriers.  In the grand scheme of things - this is great news and we are happy that she only carries it...doesn't have it.

Josiah and I have decided to make a bucket list for Max.  We want him to experience as much as he can. He already has done a lot - Been to Disneyland and met Mickey Mouse (one of our favorite family places well before kids), he has been to the local aquarium, been on an airplane etc. etc. It's a little difficult to come up with ideas for a one year old - but we are doing our best to start this list and hopefully continue to build amazing family memories together while we have the time with him on this Earth.  If you have any ideas - please let me know.

Music has been a therapy to me lately.  It is amazing how the "right" songs with messages that I need to hear keep finding their way to me. With my long commute to work and back - it actually helps me get focused for the day and control my emotions a bit - the car is where I release a lot so I can move forward.  Music is good for the soul - it is for mine.

We continue to get amazing donations, cards and well wishes.  I apologize for not getting our thank you's out personally - but we hope you understand that the time we have is devoted to our children and we are trying to make the most of the time we all have together as a family - it is so precious. If we haven't reached out - we will...we will be sure to contact all of you individually - we appreciate all that you've done, more than you know.

February 28th is Rare Disease Day.  Our goal is to spread awareness - have more people learn and understand this disease.  While there isn't a cure today, there may be one in the future and there are treatment options today if caught early enough. Awareness is key.  Thanks for the support on the 28th to help raise awareness for Krabbe to help others going forward.

I love someone rare - he is my world.

Happy First Birthday, Max!

 

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.

~Allison
#MiracleForMax

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

Bring on 2015

I've been sitting here reflecting on the past year.  While there have been more trials than I've ever experienced, I'm also very grateful in a lot of ways.  The fun, family, friendships, love, and hope had been great. We still are here with the people we love and surrounded by more family and friends than ever before.  I gave birth to the most beautiful and perfect baby boy this year. ..so grateful to have him as a part of our family.

I started following a Facebook page for Hannah...a little girl with Krabbe...who would have been two January 15th and she lost her life this past Sunday to the horrible disease.  I read about her family's experience and it sounded really tough...live in nurses...breathing tubes...she couldn't open her eyes...didn't want to be held. I'm praying for this family because I can't imagine going through it...but it seems that it will soon be my reality.  I just keep praying for strength and hope.

Emma and Max were both sick for Christmas.  All of the fun family get-togethers we had planned were cancelled for us.  Josiah and I were so bummed but I think the kids were fine with it and didn't know any different.  We did make it up to our family cabin the day after Christmas and Emma got to play in the snow.  It was fun but also exhausting. ..Max barely slept. He hasn't this past week.  I'm lucky to have some time off of work to catch up on sleep and work with Josiah as a team to keep our sanity through the nights. Poor buddy lost his voice...too much crying with a cold. I feel for him. I want to take it away. But he's still eating from his bottle...still laughing. ..although my ticklish little guy isn't ticklish anymore. He's still cooing at Emma...loves peek-a-boo...watches tv...loving the colors...likes listening to books...can hear. ..can see....wants to be held every minute which is tough but a blessing to be able to cuddle with him. I'm grateful for all of that.

We trekked to Phoenix Children's yesterday for blood work.  They are going to do dna sequencing to figure out what mutation is causing all of this... Also so that we know what to test Emma for. The last time they drew blood it took an hour to get it and they almost had to draw from his head but luckily found a vein in his hand. This time they called the IV specialty  team right away because they remembered him.  It took all of five minutes...thank goodness.  He cried longer just about being on his back than actually getting his blood drawn.   Now we wait...4 to 5 weeks for answers.

Josiah and I celebrated our 7th wedding anniversary on Monday.  We've been together for 13 years. We got to escape for a movie and dinner and it was one of the few times we weren't too tired to talk.  We both are feeling a lot of the same emotions...having some of the same concerning thoughts.  He's my rock and we need to talk more...it was hard to see a sweet baby boy about Max's age sitting near us...looking and smiling at us.  Sitting up on his own...it took everything in me not to start crying. ..happy anniversary. ..the focus continues to be our kids but it's hard to be brave for them.  We both agree however that we know we have to remain strong to help each other. I'm so grateful for this man every day and love him unconditionally.

Thanks to all of our family and friends for spoiling our kids this year. I think we can open our own toy store and library :-).  Your generosity, love, prayers and support are more than we deserve or could ever ask for and are so sincerely appreciated.

I'm ready to bring on 2015. While I know there are many obstacles ahead...I also know there will be a lot of smiles, fun, laughter and good times.  We continue to appreciate the simple things in life and live in the moment.

We wish you and your families a very happy new year and wish happiness and good health for you all.

#MiracleForMax

Changing Lives

Someone posted this quote on their social media page a few weeks ago and it really moved me:

There will always be a reason why you meet people. Either you need them to change your life or you're the one who will change theirs.

This is my new favorite quote and something that I truly believe. We have a lot of people changing our lives -  There have been some people recently who have shared their personal experiences or shared miracle stories.  There are others who know people that are somehow linked to all of this and others who have provided continuous support in various ways.  Sometimes the purpose of your life and seeing why things happen in the way that they do aren't always explainable. I don't think we are always supposed to understand why these challenges or changes come into our lives when it seems unfair or drastic or life changing. I do know that the reason that each of you got to where you are today is to have touched my family's life in the way that you have because we have needed the support and we very much appreciate it. You are changing our lives - making us stronger and surrounding us with more love than we ever could have imagined.

When I lost my mom so unexpectedly 7 years ago to a heart attack - I had no reason for why this had happened.  Why was her time up? I needed her here with me - for me, for my dad, my brother, for the so many people who were around her.  At the time, I didn't get it and I still don't entirely.  She was 53 years young. And it was tough. It IS still tough.  BUT in seeing the glass half full as I always try to do in my life...she helped bring a lot of people back into our lives that we had been missing - who are here for us now.  There are new people who are in our lives and supporting us more than we could have ever asked who may not have been in our lives as strongly as they are now.  Loss is never easy - I would ask to have my mom with me every day, but in a way - there was a lot of good that came out of the situation.  It's made me a stronger person because of it.  There may be a greater purpose for all of this.  I don't know what it is and I don't like going through this but that's how I'm trying to look at it.

We got the results of Max's DNA test back. We found out that the common gene mutation is not what we've passed to Max.  Of this rare disease...we have a rare mutation...really? So we go back to the lab and get more blood drawn and listen to our poor baby cry.  Then we wait for 4-5 weeks for the specific dna makeup...close to his first birthday.

The holidays have provided ways for us to get out and enjoy friends, family and different events around the valley.  There are some days that Max cries just to cry and other days are better and he cries because of separation anxiety like a normal ten month old would.  Emma has loved the lights and all of the fun.

We are still adapting, learning and loving each day and doing the best that we can.
Thank you for supporting us and helping us through this time. Your positive light and love can help do amazing things and we feel all of it. YOU are changing our lives...as is Max...in so many magical ways.