Baseball and Mother's Day

We've been fulfilling so many fun things on Max's bucket list and I got a message from a huge Krabbe advocate who has created the Team Krabbe Strong Facebook page, John Neal.  He told me that he had contacted the Arizona Diamondbacks about Max.  They all were so touched by his story that they decided to invite us out for an amazing experience so that we could fulfill some of his bucket list items - going to a baseball game, meeting someone famous, meeting a mascot and playing catch.  We were concerned this past week that we wouldn't make it when suddenly Max came down with a fever on Wednesday and it spiked to 103.  His baseline continues to change...he's slowly losing things but we also knew that we couldn't push it.  Luckily, while a bit fussy on Friday, his fever finally broke and we were destined to go to the game on Saturday.  The game started around 5:20 and they wanted us at the ballpark at 2:30 so we could have an amazing day.

I had the opportunity out of college to intern one season at the Arizona Diamondbacks in their game operations department where we had the opportunity to get on the field for promotions, interact with the players, etc.  But this time is was special - going back after almost 10 years (I can't believe it has been that long!!) was awesome - but it was an even greater experience to be on the receiving end of things and to experience it with my family...for Max...all because of Max.


We started meeting in the amazing Dbacks lobby.  We were greeted by Paige in the community relations department and she had jerseys for the kids, a teddy bear for Max, a hello kitty bobble head for Emma and lots of baseballs to get signed. We went onto the field for their batting practice and got to take it all in.  A normal day in May in Arizona would usually have the roof closed (hot!!) - but luckily we had a day in the 70s and got to be at the ballpark with the roof open. It was fun watching all of the players fielding...hearing the crack of the bat and watching the ball sail into the stands. I missed this...I love baseball.

They led us into the dugout to get some family pictures.  I shifted Max and he cried - these days whenever you laugh, shout, breathe, move him...it takes him a bit to calm down and he tells you all about it (he was very jumpy unfortunately that morning so we didn't know what to expect for the day).  While we were calming Max, the manager of the Diamondbacks, Chip Hale, came over and talked with us. He thanked us for being there and said hi to both kids.  He asked Emma how old she was and asked if she was going to be a ball player some day.  She of course replied that she would be lol.  And luckily she didn't tell him she was 18...that she was 3- I think she's finally getting that one correct.  We then took some more pictures and Emma kept crawling up to the top of the bench.  She also put her glove next to one of the ballplayer's gloves.  It was pretty funny to see the size comparison.  We mentioned while in the dugout that she is going to expect this every game - what an awesome experience.  We watched the players go in and out and got to watch batting practice from inside the dugout - so fun!

After we came out of the dugout, we were standing and watching the guys take batting practice.  Chris Owings (2nd)  ran out onton the field next to us and said hi to Emma and asked her if she wanted some bubble gum.  This was a new experience for her but she loved it and gave him that flirty grin that she always does.  For the next 10 minutes all she asked for was that bubblegum so finally I gave in and let her have it - she's never had bubblegum before.  She put the whole thing in her mouth and had baseball "chew" in her mouth - clumped in there with a big bulge in the side of her cheeks.  She grabbed her glove and was ready to run out onto that field if we had let her. Max also brought his glove and one thing we had on his bucket list was to play catch.  We weren't expecting for his first game of catch in his life to be with Aaron Hill! He came over and asked if Max wanted to catch a ball - it definitely was pretty simple...he dropped the ball in his glove a few times and Josiah dumped it out of Max's glove and into Hill's.  BUT it was awesome.  Max got to experience this with his dad - something any kid would love.  To play his game of catch with a professional athlete and his dad on a major league field is something truly special.  You can tell that Aaron Hill is a family guy - he was so good with both kids and asked Emma what her favorite kind of candy was - in which she replied..."all of them." So he ran into the dugout and brought out a bunch of chocolate for her (after permission from us of course).  It was very neat and she enjoyed eating it throughout the game.  He also wished us the best with Max.  Poor Max was alert at some moments and sleepy other times.  It was a lot for him to take in and he was sensitive on top of it all.  Hill signed a ball for us and ran out onto the field.  Class act and he seemed very happy to be able to play catch with such a special little boy.

They let us get closer to the batting cage and there was Emma, hands on her hips telling the guys when to swing and "good job".  Tuffy Gosewisch kept talking to her and she kept telling him "good job" after he was done taking a few swings.  The guys definitely thought she was cute and thought she could be a future manager :)  Paul Goldschmidt also came over in-between at-bats to say hello, wish us well and sign a ball.  And he of course made the comment that he liked Emma's shirt (thanks Kasey!!). He's been such a big part of the dbacks program so it was very great to get to meet him.

We thought we were about done with the day after getting to watch some of the team hit some balls out of the park when Cliff Pennington came up and said hello.  He chatted for awhile with both kids and was very gracious as well. He asked a bit about Max - whenever anyone asks about Max, I'm an open book and want to educate - I didn't go crazy like I do with some doctors but I told him kind of what happens.  It was great to be able to share about our special boy and we thanked him for taking the time to recognize him and give him such a special day that we will treasure as a family forever.

But it wasn't over yet.  Baxter came down to the field and took the time to interact with both kids.  Max was crying when he came over initially. But Baxter approached him slowly and gently stroked his hand.  Max stopped crying...I then proceeded to ask Baxter if he could come to our house every day to soothe him.  I think this was actually Max's favorite part.  He was so alert and calm.  Josiah and I were both so happy.  Baxter then proceeded to play around with Josiah and took his hat in exchange for his own - a bobcat has a huge hat and the hat had  holes for his ears.  Emma thought it was funny and Baxter tried Josiah's hat on his head but it was too small...so he put it on Emma.  It was a great way to end our on field experience. They gave us some amazing seats to enjoy the game - 2 rows up from the dbacks dugout.  We lasted through 6 innings and both kids were spent and both slept on the way home.  Thanks so much to Paige and the rest of the Community Relations Team at the Diamondbacks for going out of their way and making our experience one that we will never forget.  And thank you for allowing our precious boy to do something in his lifetime that we never imagined would ever happen.  We are forever thankful and grateful.  What an amazing organization!  And thank you to John for taking the time - not even knowing us personally - to write the Diamondbacks and help set this up for Max.  We are so grateful and you have such a kind heart.

These experiences are bittersweet.  It is amazing to get to do some incredibly fun things but we also know and it puts into perspective that our time with our son is limited. We don't know when things will turn like they did this past Wednesday, and we don't ever know if they will turn back.  I found myself sitting and watching the game with tears in my eyes.  How many games will we enjoy as an entire and complete family...maybe only one...maybe lots but it was tough.  I watched these little boys running to the dugout and asking the players for the game balls - Max will never have that opportunity.  When everyone cheered for an amazing play - Max cried...the noise...the startle...I know everyone around us was thinking...why bring a baby to the game?!  Because this might be his only one...

This Mother's Day has been the hardest yet for me.  I don't know why, but I have been extremely emotional.  I was spoiled with this experience for Max and by my husband and kids with gifts and flowers but it was tough not knowing the future...looking at our present lives and seeing how crazy things are with Max, with new equipment and experiences but special all at the same time.  I think the hardest part is that I miss my mom more this year than ever before.  She was always there to help me understand why...to help me through things. Don't get me wrong - we have support all around us with all of our families and numerous friends...but when something happens...you usually want your mom. I know at times I look at Max and think about what he could he be doing, but Max is special the way he is.  He is perfect in my eyes.  He has taught me so much about life and love.  He has shown me the kindness of complete strangers.  He has helped expand our friends and family to people we never thought we'd ever meet.  He has given us some amazing experiences.  He is Max...just perfect.  But it doesn't make things easy. 

Thank you to everyone who helped make this an amazing experience.  To be able to let our boy live is all that we could ever ask for and through these experiences, he is living.

Thank you for your continued love and support for our family. 
~Allison

PS - for more pictures of our experience...be sure to check Max's Facebook page soon!

Emotions

 We successfully had Max's G-tube placed.  We were in the hospital Wed - Saturday and he did fairly well.  We learned quite a bit but we also were just ok with the nursing care we received - we got mixed information and had to fight to get his medicines correct.  We had some great support at home during this time with Emma and also from those who visited us in the hospital. We were home for 2 days and then had a breathing scare with Max - his oxygen levels were ok but he was working extremely hard to breathe so Josiah took him by ambulance to the hospital where we were there another 2 days (2 days that Max decided not to sleep).  They couldn't do much - helped us suction his mouth and nose more than a nose bulb would do...I hate this disease.  However, we had a good experience with the doctors (more upbeat and eager to learn about this) and the nurses who were Max's advocates and a step ahead of us (for once).

Since we have been home - Max has been extremely lethargic. He sleeps all but 3-4 hours day and night.  He doesn't want to be touched, held or move. He doesn't want to hold onto things or be moved into new positions.  I don't think his eye sight is what it was because he is gazing past us again and you have to get right in front of him to catch his eyes and have him focus on you.  He seems grumpy and fussy - I think we have lost some trust from him...he doesn't know what is coming next.  It is scary for him.  It is scary for us.

G-tubes, feeding pumps, syringes, medications, suction machines, oxygen on the way, nursing home help, physical therapies, doctor appointments -- it is coming all at once.  It is overwhelming. It is exhausting.  It is hard to hold it together some days. Frustration sets in. Anger. Helplessness.

I felt strong in the beginning - we can tackle this...learn as we go. But it is tough.  It is hard to not know how to help your child.  It is hard knowing that there is no solution.  It is hard knowing it will only get worse.  It is hard knowing that we will lose him to this awful disease at some point.  It is hard to stay positive. It is frustrating that the state can't approve programs to help Max fast enough (this disease is all about time) - we are still waiting.  It is frustrating that insurance denies certain pieces of equipment that will help him - we are fighting to get these things. It is frustrating  that you ask nurses and doctors questions and they don't have the answers - or they tell you one thing and we should be doing something completely different - yet another mediocre experience at Phoenix Children's on our side (except for the surgeon who was great). - you do find some that really care and go out of their way - we have a handful that we are forever grateful for.  It is frustrating  that the Department of Health and the Newborn Screening Department in AZ is postponing things because of a rule freeze made by the governor - now we are looking at fighting to get Krabbe added in 2016. It is frustrating  that we are having to bounce our daughter from one place to the other while we care for Max...she is handling it ok but has been acting out a bit more because Max is getting our attention. It is hard to continue to find hope.  I struggle with it every day.

But it is refreshing to see all of the amazing support.  People who give because they want to help.  Those who help us out at home, whether that be meals, watching Emma, visits, emails, Facebook messages, gifts, follow-ups, fundraisers...we are so loved.  It is refreshing to have his pediatrician call us to check on Max and make sure he is ok after hours - because she wants to make sure we have the support we need.  It is refreshing to see doctors and nurses want to learn about his disease and get us the help we need - (Banner Thunderbird was really on top of things).

No one should ever have to go through all of this.  We get exhausted working to get answers and help but we'll continue to fight and move forward so that Max gets what he needs - we are his voice. We will continue to fight so that the state will understand why it is so important to test for this disease - so that no other family will have to endure this pain and heartache - and so no child has to suffer.

Hopefully we will get a "more energized Max" back to us in the next few days so we can continue with some of our fun experiences with him.  In the meantime - we keep him comfortable and love him beyond belief.

I know this is definitely a more emotional post - it is raw emotion - but it is our new reality and it has been tough to swallow and get used to.  It is our "new normal" for the time being.

Thanks as always for your love and support. I have faith that all of this is happening for a reason beyond my understanding, and we continue to try and live in the moment and take things as they come.

~Allison

Support

Holding Max after my conference

I haven't written in awhile.  Our lives have been full.  Full of amazing experiences that have been provided to us by so many generous people and organizations.  Full of extended family time.   But also full of medical inquiries, worried nights, tough days, extra emails and tiresome phone calls all for one little boy who owns my heart. But it's worth it - everything is worth it.

I was gone for a few days last week at our national sales meeting for the company I work for - close enough to come home so I could leave at a moments notice if an emergency occurred but far enough to miss my kids for 2 days.  I have to say that being around my coworkers and colleagues was great but I choked up a few times from a distance when I saw the blue Miracle for Max wristbands worn by so many of the reps that I work with. The support is more than the wristbands though - it is the personal phone calls and emails, the gifts for the kids that are not asked for but greatly appreciated...the monetary donations that are given out of people's own paychecks. I just can't get over how amazing everyone has been in supporting our family through all of this - and especially for Max.  And even those who are not comfortable talking about the situation - please know that everything is appreciated more than words and more than can ever be expressed.

After a lot of back and forth with a specialist and our insurance company - we have finally scheduled for Max to have a MIC-KEY g-tube (feeding tube)  placed -- I'm not making that up because I am obsessed with Disney, it is a real thing :-) --  and a Nissen Fundoplication (which wraps the stomach around itself to make it more difficult to vomit - less risk of aspiration).  I am glad this is finally in place because while he can still eat by mouth,  it is taking longer and his stomach isn't always happy and can't always keep things down.  I'm also petrified....of learning this whole new process and way of doing things....petrified that he will be under anesthesia. His surgery will be on Wednesday 15th (tomorrow) at 1:00 PM PST.  We will be inpatient with him at Phoenix Children's Hospital until at least some time on Friday if not longer based on how he is doing with the recovery. We are praying and hoping that everything goes smoothly.  It will take time to heal - no doubt...so we may be slowing down on the "fun experiences" for a little while.

Meeting Howler at the Phoenix Coyotes Game

Also since posting Max's "bucket list" on his Facebook page - we have received an amazing response - people from all over who are extremely willing to help us make everything happen for him.  We are so amazingly humbled by it all and every time we find out about a new experience - we are so surprised, grateful and amazed - thank you sincerely for helping us make some wonderful family memories. I've had numerous people contact me on similar experiences and we appreciate everything!  There are so many wonderful people who are giving and gracious to make these things happen for us....for him.

Recently in the Krabbe Community we lost two perfect little angels.  While I never met either of them or their parents, I felt so connected and followed their stories. We lost precious Anna who was a Disney fan and just recently took a trip with another little boy in the Krabbe Community, Jackson, to Disneyworld. There they were dressed as Belle and Prince Adam - so cute. It looked like such an amazing trip for both families. Sweet little Anna was also present to see Kentucky sign a law that will include Krabbe testing on the State Newborn Screening program.  Unfortunately the next day, she grew ill and passed.  She was just a little over 23 months. The moment I opened Facebook that evening - it was all over my news feed.  I was in tears and clung on to Max so tightly. My world stopped - I cannot imagine how it felt for her parents. I don't want to even begin to try. We lost sweet Lauren from Canada just yesterday - again my world stopped and it was a difficult evening for me. She too was a Disney fan and had so many amazing photos on her page - such a sweet little girl. I saw a post to her page in the morning my time that had a tone which was different - or I perceived it to be that way.  Then I checked her page in the afternoon and she had passed.  Both of these kids reminded me that this disease is just so cruel and it can come out of no where. Life can forever change in an instant.

Loving his new toy - Lightning McQueen!

Now my rant...the political garbage of not funding the opportunity to save a life in each and every state in the USA is just unreal. I know I am new to this Krabbe fight, but I'm more determined than ever to help advocate - to provide the opportunity of life and hope for the families of kids who get diagnosed right away is unmatched.  It may be rare and it may not come up often so it is looked at as too costly for each state, however it is the only chance to treat Krabbe and there is a solution. If you put yourself in our shoes - wouldn't you want to know if your child had Krabbe at birth and his hope and chance was to get a transplant - at least be given the option so you could research it further or at least get a second opinion if you weren't sure about the initial test? Or would you rather worry because your child is suddenly losing abilities, you take him to multiple doctors to not find a diagnosis because nobody has heard of this disease...finally get the test results that tell you it is too late to do anything and take your child home and keep them comfortable because nothing can be done? To me the choice is clear...but I'm also living it. 

This Krabbe community can be extremely difficult to be a part of, but there is also an extremely strong connection to all of these families.  The support and guidance...the reassurance, tips, and suggestions...the LOVE is amazing.

I'm terrified of this procedure and newness with Max tomorrow - I'm terrified for all of the unknown experiences that just keep presenting themselves - I'm terrified for our future without this little boy - I shouldn't go there but it's hard not to have that thought cross my mind. There are days that I'm not myself - more emotional, sensitive, will get angry for no reason at all...will shut out those who I care about more than anything.. It's hard, it's really hard some days. BUT I'm also grateful for the support, love and prayers and the amazing energy and light surrounding our family.  He is quite a little boy to be touching the lives that he has. 

For now...I will remind myself to take things a day at a time - live in the moment - tackle our obstacles as they come. Support those who we can, accept the support around us.  Thanks for the extra prayers and love this week as we embark on a new adventure with this little man.

"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