Catching up - Year 2

    So around Makayla's 1st birthday she was sedated for an MRI (let the test's begin). The results were normal along with a bunch of bloodwork ruling out a number of other possible diagnosis! We had started our weekly therapy appointments  which consisted of  a 30 minute screaming car ride an hour long torture session, and a 30 minute screaming drive home! It was so painful each and every time!! I suppose you could say it was worth it because at about 16 months old she started crawling! I wish I had the words to describe this but all that comes to mind is awkward and unbalanced!! ( but who really cares we were ecstatic) Here began a very long journey of head bumps and bruises and a whole lot of panic attacks (mine of course!)

   Makayla was casted for her first pair of AFO's (ankle braces), she was pissed!! Her spasticity made it tough to get them on, and if she could talk I think she would have said that they irritated the crap out of her! To make things worse she hit her 18month growth spurt and as if the nights were hard enough add painful stretching of tendons and muscles to an already very unhappy kid  and you get a very very exhausted, angry little girl! Sooo the Dr says lets try a muscle relaxant!! ( I am so not for drugs, but I was DESPERATE) I hadn't slept a full night in nearly 2 years!! So I said ok! I woke up the next morning in a panic!!!  She had slept through the night!! i would love to say that the sleep problem was solved than and there!! (IT WASN'T) It helped but Makayla's body seems to get use to drugs very quickly! Next came botox injections, large needles 4 to 8 at a time put deep into her leg muscles in hopes to slow down the muscle contractions! ( torture is the only word I've got!) This seemed to work a bit but it only lasts for a couple months, so there started the dangerous concoction of an increase in drugs and botox!( Did I mention this kid is not even 2 yet?)  There comes a point when you simply need the screaming to stop and you pour all your trust into the 'professionals', ( apparently not always the best idea).

   Now let's make something clear! Mak's disability up to this point was totally physical! The Dr hadn't been concerned about her intellectually because she was using a number of signs ( thank you, more, stop, dog, milk) and she was able to say bubba in reference to her bottle, mama, dada. Here is where things get odd! After some time of being on her meds Mak simply stopped communicated. No words, no signs, no eye contact. She was tired and clumsy, and yes still very cranky, but because she didn't speak a lot it was hard to tell at first if this was behavioral or what.  ( Let the guessing games  begin!)

    I remember a moment that I refer to as 'buggy eyes', she had absolutely no balance and her eyes seemed to be popping out of her head ( I didn't think it to be a crazy idea that this little girl was virtually exhausted!) The doctors agreed that most likely this was exhaustion so let's up her meds. ( Doctors don't think hmm maybe this is a side effect from the large amounts of meds she is already on, that would be like admitting a mistake!) The remainder of this year would consist of good days and bad days.