As most of you know our son, Maximilian, was diagnosed with Infantile Spasms this past week.  The journey that finally led to this discovery has been a long one and not easy in the slightest.  Shortly after Max was born I felt that something wasn't right.  Shakey legs, excessive crying, tight/very stiff muscles, severe reflux and eventually realizing he was not meeting certain developmental milestones.  I asked his pediatrician at every appointment what could be wrong, but he kept telling me every baby goes at their own pace and I knew this but still...I know my baby better than anyone else.  It wasn't until we were at a recent check-up when his doctor saw that I was visibly upset and crying that he listened.  FINALLY listened.  Even though he didn't think anything was wrong with Max, for my own peace of mind, he referred us to New York's early intervention program, Challenge.  After some initial appointments, we had two evaluators come to our home to check Max out.  Challenge confirmed that, yes, Max was delayed by about a month but nothing a little physical therapy wouldn't be able to fix since we are catching it so early.  At our next appointment with his pedatrician, the doctor took the information from Challenge, coupled with the fact that his head circumferance hadn't seemed to grow, and he told us he was concerned.  He was referring us to Methodist Hospital, where Max was born, to see a neurologist.  Once we met with her she addressed the same concerns and ordered an MRI to be done - they would be looking for Spastic Quadraplesia Cerebral Palsy and Microsephaly.  As you can imagine, I was a basket case.  The thought of putting my 5 month old baby under anesthesia was terrifying. 

Fast forward a couple weeks later.  We were on a family walk on a Thursday afternoon.  Max had fallen asleep in his stroller and when we pulled up to our house afterwards and stopped to talk to our neighbors, he began to stir.  I picked him up and he did something unusual.  He thrusted himself forward, with his hands extending outward, head lowered to his chest and his legs came up.  I thought he was trying to sit up at first because he doesn't like me holding him like a baby anymore, he likes to be up-right.  I adjusted him accordingly and suddenly it happened again, and then again, and then again.  It lasted at least a minute straight.  Other than that, nothing else seemed out of the ordinary though, he was still completely aware and didn't seem to be in pain.  When he woke up in the morning and did it again, however, that's when I panicked and started taking a video of what I was witnessing.  In the months leading up to all of this, I'll admit, I was reading a lot on the internet about his symptoms and what it could all mean.  As silly as people made me feel about this, I'm glad I did because I recognized Infantile Spasms immediately because of how much I've educated myself on so many disorders.  I sent the video to his pediatrician and neurologist and they advised that I get Max to Cornell Hospital in Manhattan as soon as possible.  After a 24 hour EEG, my worst fear came true.  Infantile Spasms - seizures. 

It has been nearly a week since we've come to the hospital now and after a normal MRI, blood work, IV's, tests, and more tests, we have not found what is causing this to happen.  The genetic test results come back in a few weeks, some of what they're testing for may take a couple months.  For now though, Adam and I have learned how to administer his steroid injections that he needs to be on for 4 weeks.  These steroids can wreak havok on your heart, weaken your immune system, cause your sugar levels to surge and have a lot of other scary side effects, but luckily they go away once he's off of them. 

With all that being said...I have been on the fence about creating a 'go-fund me' page.  But after a lot of thinking I know I have to put my pride aside on this one because it isn't about me, it's for our son.  For those of you that don't know, Adam recently quit his job at Dinosaur BBQ after nearly a decade working there.  We came to this decision because of many reasons, but ultimately it was because we didn't know what was wrong with Max at the time and didn't feel comfortable putting him in childcare - and thank God we listened to our intuition.  I went back to work full time and although I do have good medical coverage for my family, between the deductible, the extended hospital stay, co-pays for the therapies he will now need, and the Tier 3 medications, it's all going to mount very quickly even with insurance. 

Any little donation would be greatly appreciated by Adam and I.   Thank you and please keep the positive energy coming our way.