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.