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