Tears, Courage and Rainbows

My heart is aching.  My emotions are high.

Max had a really good weekend and a good Monday and Tuesday.  I typically get up each morning before everyone else and head to work. I posted Wednesday morning without looking through my Facebook newsfeed.  I noted that Max had been having good days.  I got a call about 10:30 - he's struggling.  Our nurse noticed that Max's O2 levels were dropping into the 70s and staying there - his normal is low 90s and dips into the 80s but goes back up.  She administered some O2 and he got back to his baseline and had a good night.  We are watching him to make sure nothing is going on.  I received a note about lunch time yesterday that mentioned what a sad day was for the Krabbe community. We lost two beautiful kids - Addilyn and Nicholas - to this horrible disease. I hadn't seen this - it was a shock...  I closed my office door and cried.  I just couldn't hold back the tears. My heart is aching for their families, and it hurts even more to know what other parents within the community have already gone through and still do but also....what is in our future.  With every loss...I get a flashback to diagnosis day - there is nothing we can do.  Take him home and keep him comfortable. I don't know how we are going to do this...how I will have the strength to continue to move ahead.  I don't know - but I also know I'm not the first to go through it.  Others have survived and live each day the best they know how. I admire their strength, their courage and their grace.  I continue to try to live in the present the best I know how.  But it is easier said than done.

This is not the first time that Max has been having good days and then struggles when we find that another Krabbe child passes -  there is a significant change.  With Hannah, Anna, Parker, Lauren, Addilyn, Nicholas, Maximus...and others. It is as if he can sense it.  Maybe I'm reading too much into it, but it has been consistent.  I think it hurts a piece of him too.  I think he can sense it.

I got it together after crying in my office and went through the rest of my day.  We are having celebrations, games and meetings at work this week.  I hope I played it off and no one recognized my sorrow - I try my best not to bring it with me.  I got into my car on my way home and sobbed.  It was a gloomy day with lots of storms.  I played sappy songs to try and get it out of my system before I got home with my kids. I try to be brave for them and try to carry a positive presence for them...or they will know something is up.  Something that is greater than they can handle.

I have a good 45 min to 1 hour on my commute home, and I was about 15 min from home when the sky parted and the most beautiful rainbow appeared.  There were gray clouds all around and a patch of blue sky with the rainbow in the middle - stretching above the clouds.  It was a sign to me - it's going to be ok.  You have the courage to get through this...to advocate...to take care of your kids...your family...to have strength for others who need it. You will have the courage to get through all of this and to carry on. Then a second rainbow appeared - it was the most vivid rainbow I have ever seen in my life and it stayed with me until I got home - then slowly disappeared.

I don't know what the signs mean or if I am superficial.  But I truly in my heart believe it was a sign - that those who we have lost are ok.  That I'm going to be ok.  That Max, Emma and Josiah will be ok. It certainly doesn't make anything easier or better here on Earth but a hope.

I got home and clung to my kids.  I hugged Max and played with he and Emma. Through all of this, I'm so blessed - to be with an amazing husband who has been through a lot with me already, let alone this.  To my two beautiful kids who I wouldn't trade for anything.  There is so much love and support that continues to surround us.  Friends, family, co-workers and complete strangers who are helping.

But the Krabbe Families all over the world who we have connected with... who continue to push and advocate - no matter how much pain they re-live, they push on to help future kids and families - they are heroes.  They are there to support all of us who are still going through the fight with our children and they stand together and hold strong for those who have lost their children. They are so open to helping others. The strength, courage and grace that is shared is remarkable. We are all family by genes - I would be lost without them and their support and openness. They inspire me to live each day to the fullest and continue to fight for Max. And fight for future kids. Thank you.  I can't always express how much it means - but it means a lot.

I have found that I have the courage to move forward and to live in the moment with my family and friends.  Each and every day I have with everyone is a gift. Each and every day I have with Max is a gift. There is no promise of tomorrow.  But I've found the courage to live for today.


Allison

WARRIORS

I was running errands the other day and the song "Warriors" by the band Imagine Dragons came on. This song has been used at  sporting events and in video games to elevate the level of intensity, fire and passion that people hold. It is a heavier rock song but the lyrics really stuck with me. Here is a link to the song:www.youtube.com/watch?v=VP9I8ZUwKpc 

As a child you would wait
And watch from far away.
But you always knew that you'd be the one that work while they all play

In youth, you'd lay awake at night and scheme
Of all the things that you would change, but it was just a dream!

Here we are, don't turn away now (don't turn away)
WE are the warriors that built this town.
Here we are, don't turn away now (don't turn away)
We are the warriors that built this town.
From Dust.

Will come, when you'll have to rise
Above the best, improve yourself
Your spirit never dies
Farewell, I've gone, to take my throne
Above, don't weep for me
Cause this will be the labor of my love (my love)

Here we are, don't turn away now (don't turn away)
WE are the warriors that built this town.
Here we are, don't turn away now (don't turn away)
We are the warriors that built this town.
From Dust.

These Krabbe kids are the WARRIORS...warriors battling to get through the day...to see...to hear...to experience life...to breathe.  They battle daily. Their parents are warriors for calling on insurance companies to get them the gear they need, taking them to doctor and specialist appointments to find answers, ER visits, therapies, etc to get them the care they need to thrive...or really...to survive. The community around them is created...with prayer, love and strength. They are warriors for advocating for the next generation of kids who hopefully may never have to experience this horrific disease because it is caught early enough with newborn screening. These Krabbe kids are warriors for leaving a legacy for other children...creating change within their states...their communities - so that one day they can help others survive.

...but it doesn't make the day to day easy.

I can't talk on behalf of the parents who have lost their children to this horrific disease but I can attest to living through the daily emotions and routines or surprises:

• Not wanting to put my child down because I don't know how long I'll actually get to hold him.  
• Running to his aide when he is choking on his own secretions and gasping for air (Max has been gasping lately when he's upset). 
• Keeping a journal of medicines to make sure you don't overlap and give him too many...which could lead to organ failure. 
• Figuring out how much to feed him...how to keep him hydrated...how to adjust if he isn't tolerating it. 
• Counting his diapers to make sure he's functioning properly.  
• Calling on home equipment companies to try and get the equipment he needs (going on 6 months)
• Forwarding medical necessity letters and denial letters to get the coverage needed with insurance
• Questioning everything - why hasn't this been done, how do we get approval, who can I call, how much longer should we wait?
• Learning new equipment and medical terminology (I feel like I can add a few things to my resume)
• Daily appointments, therapy sessions, nursing care
• Keeping his stats to make sure he's hitting his baseline
• Trying to figure out if his baseline still exists or if the disease is progressing

Then trying to achieve the "normal things"

• Cooking dinner 
• Trying to keep up with the housework 
• Entertaining a 3 year old
• Running errands, etc. 

I wouldn't trade my life for anything...but some days by the time the kids go to bed...I'm ready to end my day as well...just to hear Max wailing in pain with another leg spasm. My husband is the one doing all of this at home during the day while I work - he is a rockstar! It isn't easy. I come home and we pass the baton... and he goes to work. We have such opposite schedules to provide the best we can for our kids...

It's hard to watch your child suffer.  Luckily Max doesn't every day yet...but when he is and you try everything you can think of to help him but it doesn't work - you feel helpless.  I posted recently that I feel like we "wing it" often. A lot of doctors and nurses have no idea what to expect, how to help...but we have a few who have been blessings.  We have still been blessed in the fact that he doesn't need oxygen full time and some other things but I always question if I'm missing something....just by virtue of not knowing or not knowing what to even ask. With this disease...things can turn quickly...a lot of his Krabbe friends and special needs friends have recently been battling... they have been in and out of hospitals ...they are fine one minute and battling the next.  While we get to experience fun things with bucket lists and family get-togethers, this disease also becomes very real...very quickly. Plans change, things are cancelled.  My friends know that my new clause is - "we will be there as long as Max is doing ok"...and I appreciate their flexibility and accepting of it all.  It is scary...the unknown...the "what's ahead"... is scary.  We trust we are moving forward the best we know how. We live in the moment with the wisdom and trust that we are doing the best we can...We have to.

Lately, it has been a bit frustrating when we have been advocating and telling people to test their children or themselves for Krabbe and when they try to do so...they get the run around or they get uneducated responses... "It is so rare your child will never get this"... "It doesn't run in your family so why are you testing?" ... "Sorry, we can't help you - we don't know what that is". Luckily, in these instances, these people have pursued and haven't given up. If you do want to test yourself or a child who was born - you can get a kit off of the Hunter's Hope website - it says it is for newborns, but it should work for adults as well.  It will at least show if you have carrier status...then you can get into further genetic testing to confirm if you actually have the disease or not.  I think this is the best place to start.

I sincerely hope that  our state decides to put some funding toward Newborn Screening...they may actually save someone's life.  I hope they also educate the medical field a bit by adding it to the test.  You can't put a price on life but our state is debating that still.

There are many Krabbe Warriors who have made a difference in many states which are including Krabbe in their newborn screening process.  There are many warriors who continue to battle to get it added.

Max will continue to be a warrior. He fights every day.  Josiah and I will continue to advocate and push, and educate...we can't give up - we won't give up. I continue to wear my various "Warrior Shirts" on the weekends representing the Krabbe kids across the country who fight daily and trying to bring attention to this disease.  I'm sure you have seen a few of these shirts on Max's page.  We'll continue to learn and "wing it" the best we know how.  The love we have for our children is unmatched.

We continue to uplift and pray for these families who continue to face their own daily challenges.  We appreciate all of the warriors around us who send their daily love, prayers, words of encouragement, gifts and wonderful spirit.  We couldn't do this without you, and we are grateful to have you by our side as we continue on this journey.

~ Allison 

The Daily Challenge & Our Train Park Adventure

This disease is devastating. I got in the car yesterday and looked at Max through my mirror - his eyes were staring off in the distance...they were going different directions...I started crying while my three year old asking me if I was ok.  I think Max's eye sight is very limited. This disease is moving so fast.  Josiah and I have been putting things in front of his face with no real reaction.  He can definitely hear us and occasionally I think he will lock eyes with me - but it is happening less and less.  He's also lost that beautiful smile. The baby who slept through the night at 1 1/2 months and laughed and smiled like no other baby I've ever seen...is now not able to express much.  It is heart breaking.

When I get him dressed each morning - I talk him through it. He gets very jumpy or irritated with certain quick movements so talking him through it and going slowly seems to work.  At the end, I tell him how proud I am of him and that he is so brave for not crying - his eyes always widen...a sense of pride...at least I'm going to interpret it this way. I remember posting quite awhile ago about me singing the ABC's to Max and at the end I'd ask him if he wanted me to sing again - and he'd coo.  I'd give anything to have that moment in time back - to give him back those simple abilities.  Life continues to change and throw obstacles our way...we've learned to adapt and change as needed but when you look back or think back to those early and happy days...it is hard.  It is hard to live in the present and not to grieve the inevitable.

About a month ago we had an amazing Saturday at a local train park with the Jamison Family. I'm sorry I haven't posted this until now but wanted to share that we fulfilled Max's bucket list "Ride a Train" at the park.  Emma loved the carousel, and we walked through an older train car from the 1920s - it was very cool.  Then we all got on a little train and rode it around the park - Max ws very tired for a lot of the day but was soothed by the train ride with the wind in his hair - he really liked it. Thank you to the Jamison Family for the fun Saturday and for spoiling the kids and us - it was so generous of you all and was a great day spending time with you.  I've included some pictures of the train park below - be sure to scroll to the bottom to check them out and I hope to upload the video soon as well.

We are taking each day as it comes.  Suctioning and trying to modify his feeding schedules appropriately so his little body can handle it are our daily battles.  Working to get insurance to cover certain things and working now with the state insurance to get the nursing care we need has been crazy.  Swerving to get to the side of the road because he is choking or me jumping in the back while Josiah continues to drive happens more frequently. It is scary to only have one adult in the car.  I'm sure during rush hour that we upset a lot of people when this happens. Just remember if you get cut off or someone does something on the road that comes out of nowhere - please remember that they could be racing to an emergency or trying to help their child in the backseat.  While we try to be as careful as we can, there are times that we get a little crazy. Luckily the majority of his struggles in the car have come when both of us have been there but we've been alone when it happens and it can be very scary for him and for us.

We have a nurse come out to the house once a week to weigh Max and answer any questions to be sure he is where he needs to be with everything.  We have a therapist come to the home once a week to help massage Max and stretch him - Max LOVES her.  You can tell it has been a good day when "Miss Lisa" has come to our house.

It continues to be a struggle to balance "real life" with all of the medical obstacles but we are getting through it the best we know how.  Emma is now alerting us if he is choking and has the suction machine in hand to help Max out - how many 3 year olds even know what a suction machine is?! :-( She perseveres through it all but some days the "attention" balance is harder than others and she clearly suffers with not as much.

Thank you for your continued support.  Your messages on Max's Facebook page are so loved and each one is read.  We appreciate the questions - I'm happy to help educate the best I know how.  Keep them coming.  We appreciate all of the support around the wristbands, t-shirts, gifts, money and simple notes. Your love surrounds us and helps us through each day.  Thank you for continuing to lift us up and help us out.  We appreciate it more than you know.
~Allison

Anthem Community Support

"I've heard it said

 that people come into our lives for a reason, 

bringing something we must learn,

and we are led to those 

who help us most to grow if we let them

and we help them in return."

 

~Stephen Schwartz, Wicked the Musical

I resonate the best with music. Music is so freeing to the soul.  I have quite a commute from work to my home so I find myself allowing the music to speak to me during these commutes ...some of the lyrics may not have been meant in the way that I interpret them but it helps me none-the-less. Sometimes it can be comforting, heart breaking, eye opening...the list goes on. I've had some good cries to and from work just releasing tension, fear and other things, and I've also had a sense of great joy and strength.  It is a good reflection time for me.

I love Broadway musicals, with WICKED being one of my favorites, especially the music. "For Good" came on in my car the other day with the above lyrics really making me think. I personally don't think that things happen by coincidence or people cross our paths just because...there is a reason and always a chance to learn from another.  I've found that if I allow myself to open up, I can learn.  I can learn more about them, learn a life lesson, learn about myself. I've learned so much in the past year. I've learned how gracious people can be and how many people are willing to stand by our family. I've gained friendships where I never imagined I'd find them, but I am extremely grateful to have them. I've taken the most stressful moments and tried to find a positive light through it all. Max has come into my life for a reason.  He's teaching me so much and I'm growing as a person. We all have a purpose but his is truly special and has brought a lot of good out of a lot of people, me included.  Would I change this purpose... selfishly,  YES of course - it is hard seeing him go through what he does each day, but trying to comprehend this and find a light through it all is the way that helps me get through each day. I'm also trying to help him through all of this, the best that I can.

So many of our family and friends and even complete strangers have been incredibly supportive of Max but we've found that the community of Anthem is unlike any other.  We were contacted through Max's GoFundMe account by the Anthem Country Club who was hosting a 50/50 raffle at their golf tournament and they wanted to support us with 50% of the proceeds that they received.  What an amazingly generous gesture which we greatly appreciated.  On top of that, the person who won, Elaine, decided to donate her winnings to us...so we got 100% of the raffle.  What amazing support that we have received from this community and we are humbled and grateful for love and support.  Thank you for taking the time to support us and continue to help us raise awareness.

A few weekends ago, a tennis tournament at Anthem Community Center was also hosted in Max's honor.  People went out of their way to make posters with his pictures, they had a raffle for prizes, and flyers were handed out to educate about Krabbe.  It was amazing how many kids and adults came out to support us. We were able to bring Max late in the morning to thank everyone in person.  I'm so glad Josiah was there to jump in with a short speech about our thanks because I was choked up - the blessings that continue to present themselves are just incredible.

The Anthem Community comes together to take care of those in their community.  We are so honored that Max was highlighted in their programs.  He's so loved by so many.  Thank you to both the Country Club and Community Center teams for helping us raise awareness and helping us financially with Max as well.

We have been fortunate in the fact that a lot of the money raised has not had to be used yet.  We don't know what is ahead but have been fortunate with our insurance and family support. However some most recent necessary equipment was deemed "comfort items" so we may be tapping into that resource.  I wanted to mention that if we end up not having to use it for expenses for Max's equipment, therapies etc. we look to donate it to help other families or support some of the programs who have supported us.

We did launch a t-shirt booster campaign to raise awareness about Max and Krabbe. If you are interested in getting a T-shirt or Tank Top, you can do so here until June 15th: http://www.booster.com/miracleformax1

As I mentioned to someone recently, we continue to take things a day at a time.  We help Max through the rough moments but we really enjoy the moments of joy and fun, celebrate the little milestones and continue to love him as much as we can.

I will have an update soon on our Train Ride with Max and also our experience at Luke Air Force Base soon. We've continue to tackle his bucket list at a rapid pace - it has provided some great moments and memories for our family.

Thank you as always for your continued love and support.  You help us daily, more than you know.
~Allison

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