Catching on up - year 3

Year 3, I call this the year of the ambulance, the hospital stays, and withdrawals! In the summer after Makayla turned 3, she had a very difficult time waking up one morning. It was just the 2 of us home and after waking up she could barely stay awake, she seemed disoriented and very clumsy. You never want to think the worst but suddenly Mak lost consciousness! I dialed 911 and within a few minutes a whole lot of people were in my house! Her breathing had become very labored and her eyes were totally rolled back into her head. As the fireman tried to rouse her and put oxygen mask over her mouth she didn't even wince. She wasn't there! She couldn't tell the difference between me and these perfect strangers. ( Now considering how anti social Mak was this was incredibly crazy for me.) At the hospital she was hooked up to all the essentials, they took blood, and than we waited, and waited and waited. Mak was unconscious for 10 hours!! This feels like an eternity in the emerge when its your baby!! The pediatrician figured this to be a post dictal period after what must have been seizures ( sudden loss of consciousness, eyes rolled back, etc.) It had been suspected that it was a stroke but her cat scan was clear! So what do you think they did, thats right people they gave her a huge dose of meds!! Once she finally started waking the meds had caused a strange reaction, what was labeled as thrashing about! Now to explain all the details would take up a whole lot of blogs so I'm gonna give you a short version.

    The next day we went home. Her pediatrician than added a regular dose of anti seizure medication to her already large dose of muscle relaxant and botox injections. Makayla hated these new meds, she fought tooth and nail, and would spit as much out as possible. (perhaps she knew better) Now without using any profanity it will be hard for me to get my point across here, Makayla turned into a possessed child who wanted to crawl out of her own skin! She screamed night and day, there is no question in my mind that she was hallucinating ( and the sights were not rainbows and sunshine).  We tried changing from tablets to liquid but  it was useless we were doomed.  Now one would think well at least she isn't having anymore seizures, well thats what we thought until we went to visit Oma and Grandad in Peterborough(3 hours away). I had a girls night and had to race back to find Mak nearly unconscious again, the cycle repeats ( 911, emerge. IV, little old dr with a bow tie, heavy does of different med, 15 hours of waiting for her to wake up) However this time she presented with some stroke like symptoms in the ambulance. ( scariest moment ever up to this point) She tried crying but only half her mouth would open. Dr Bow tie called the thrashing about 'scratching at demons' which is not what I wanted to hear but totally what I thought. To be continued...

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.
  

Let's do a little catch up! Makayla's first year!

    Well here we go! Year 1!! Feels like a whole longer ago than what it was! Makayla was born 10 days over due, and without getting to icky she was literally yanked out by her head by a student midwife!! (Don't get me started) The bruising around her head was so bad that we called her 'blueberry' for a very long time! After she was born we spent a whole 3hours in the hospital before we headed home! ( Crazy now looking back!) Things seemed to be going pretty good except for a rather cranky newborn! Makyala twitched A LOT in her sleep to the that it was very hard for her to stay asleep for any length of time at all. I have video of her twitching away in her sleep only a few days old! I was told this was normal ! It wasn't!! Makayla starting having these seizure activities from the very beginning but no one did a thing until she was nearly 2 years old! Here began the beginning of our not so good medical experience! At 19 days old we took Makayla to the local emergency, she had become very lethargic and wasn't keeping much down! The pediatrician who I had been told was the 'best' and we were in 'very good hands' came in and decided that she needed to run some bloodwork and do a lumbar puncture to check for a serious type of infection. Makayla learned than and there that DR's are simply not to be trusted!!! She was the strongest most vocal baby that Doc had ever seen! After hours of trying to get an IV to start an antibiotic (before they even had any proof of infection might I add) they shaved her hair and got a usable vein in her head! Horrifying would be a good word to describe this experience! Next came the lumbar puncture! This 'great' Dr had been up working for 17 hours and after rubbing her weary eyes attempted to stick a long needle into a 9lb babies spine! Makayla would simply not give in!!! after several attempts and an entire team of nurses holding this infant down the Dr gave up! She said it was the first dry lumbar puncture she ever had in 25 years of practice! After a few days we were sent home with no answers and a very pissed off child!!

    Well colicky would be a way to describe the rest of that first year! Makayla  was tired and cranky and very attached to mama!   Her body  continued to jerk and twitch her awake night after night! Most  nights I was up 5 to 10 times sometimes for hours each time to calm her back down! Apparently this was normal because we had allowed her to get use to sleeping in our bed, or allowed her to drink from a bottle! I read lots of books and tried everything but it was all utterly useless!

   At 8 months old a little light bulb went on, Makayla couldn't eat her toes! As weird as that sounds that was the moment I realized how tight Makayla was! Babies ate their toes!!! Makayla couldn't even remotely get her foot near her mouth! Not to mention she still couldn't remotely sit up or crawl!

   Specialist number 1! We had just moved up north and did not have a Dr. so I made some calls and 1 developmental Pediatrician had a cancellation that week! (life would never be the same) After a 30 minute car ride with my still screaming child we went through about a 40 minute question and answer period and some very simple tests! Expecting to hear that Makayla had tight muscles and would need to do some physio, we were beyond shocked when the Dr asked us what our worst fears were??? My answer do to previous googling activities was 'cerebral palsy'. Well that is what I'm thinking she said. We were told that Makayla would have a life long disability that day and everything after that sounded like muffled garble as I fought back tears.

A road less travelled

Makayla will be 4 years old in May. She currently is diagnosed with hemiplegia spastic cerebral palsy and nocturnal myoclonic jerks!! She has come a long way over the past year! She's what you call an unbalanced climber,  meaning she can't even stand on her own but she loves to climb onto the most dangerous of things! She is currently learning to use a walker for short distances and a wheelchair! She is our Mickey moo, our monster, and princess! She doesn't talk but she signs 'please' and every time she does it melts my heart! She just started saying Mama again in the last couple of days ( the most beautiful sound I have ever heard)! She does regular physical therapy, speech therapy and occupational therapy. She is seen regularly by a whole lot of different specialists at McMaster and her diagnoses is currently being questioned. A good friend said her diagnoses will not change her, she will be that same funny little girl regardless of the title. Her journey has been incredibly hard, most parents will never endure a tenth of what she has gone through in the last few years yet she remains happy and what I would consider inspiring! Her laughter is infectious, I could only dream of finding such joy in such simple things!