A rusted white bus

Its been a long time since my last blog, I suppose time really does fly when your having fun! Makayla started JK in September. I stressed all summer about how this was going to be. I feared her  screaming as I strapped her into her wheel chair and having an anxiety attack while the bus driver pulled away. However summer was hot and Makayla doesn't do well in the heat. Soooo as the school year quickly approached I was ready to wave goodbye regardless of the protests! Now here's the kicker, its the little things in the special needs world that make you go well that just sucks!I had one of these moments on the first day of school when we were patiently waiting for our cute yellow school bus that we had toured the week earlier. Suddenly a short rusted white bus came to stop out side our house! I was devastated!!! As if its not bad enough that I have to wheel my kid onto the short bus for her first day of school but the damn thing isn't even yellow, and rust??? Really???? I was sad and angry and worse of all the dreaded harness had to be put on now! (I'd like to think of myself as a steel wall in the emotional realm but my eyes weld up with tears) suddenly I realized that perhaps all this time of stressing about how Makayla was going to react to this new period of her life was really panic of how I was going to react!!!!! Aghhhh!!!!! Funny how things work however cause before I knew it she was gone on a short white rusted school bus with perfect strangers! But wait a minute I could hear something I hadn't heard in a very, very long time.... silence! Ahhhhh peace and quiet and a bath calling my name! It was there and then I knew that I would be just fine!

Makayla turned out to love her first day of school and every day since for that matter (knock on wood). She is happier than she has ever been, and a happy monster makes for a happy mama, and there is something kinda funny about just how much I love that rusty old school bus now!

On a quick health update from the 12 tubes of blood, so far everything is normal and it could take up till Christmas to have all of the results in. I have been anxious up until now to get them but suddenly have realized it simply won't change anything, so for now Im just gonna enjoy the silence a little every day!

Monster mash and 12 tubes of blood!

Well the monster mash has come and gone! I am happy to say it was a success! We raised enough money to purchase the things on our wish list and then some, and I would like to think that everyone had fun. I am thrilled by all the people that helped out and that showed up, but have to admit was surprised by the people who didn't! It's an ongoing theme on this journey of the people who you hoped and thought would be there and aren't, Saturday was no exception. I fully realize that the people who were there are those that matter, but I continue to be surprised by the proportion of nearly strangers to family and friends. I haven't been able to fully understand this as of yet, but perhaps there will be meaning in it someday.

On Monday Makayla finally had an appointment with a geneticist,I was looking forward to this appointment simply because sometimes all it takes in my opinion is a pair of fresh eyes. In my mind I felt this was the last kick at the can in figuring out why Makayla is the the way she is. She does have a diagnosis of Cerebral Palsy, but this is more for the sake of paper work and resources. Makayla does not fit into a typical classification of CP, she has spasticity but more dynamic tone, mixed with episodes of low tone! It's complicated, the point is that people who have Cerebral Palsy have spastic tone that doesn't change. It is what it is. However all specialists who have sought after a proper diagnosis have failed and then moved on. I was relieved after the last batch of tests came back negative cause it was the last of the waiting, the last of the poking, the last of googling of crazy disorders and getting totally freaked out! I was at peace and acceptance that Makayla was who she was, and it was time to move on, no fixing her, no figuring out why, just living life.

The geneticist was so nice, so patient, and so sincere, ( a rare quality in a very busy specialist). She spent an hour with me, asking me questions, looking through Mak's records. She said 'that  little girl should have never waited this long to see me, I have seen enough children with cerebral palsy and she isn't one of them.' Perhaps i knew all of that but hearing it come out of her mouth was a huge wave of differing emotions. So here we go again! A very long list of genetic disorders, metabolic conditions, etc. 12 tubes of blood, 3 bottles of urine, a whole crap load of screaming, and a few days of exhaustion, and finally the wait! Yep right back to the racing heart for no reason, the restless sleeps regardless of how tired I am, the googling just to make myself crazy! Ugh! Her we go again!

Monster Mash!!!!!!!

Monsters Glamour Shot!

Days can seem long, weeks can seem endless, and years seem to fly by! There have been moments over the last 4 years when I doubted my ability to survive the day, there have been circumstances so tough I wanted nothing more than to quit, but when I look at this picture I know that somehow it was all worth it. Makayla's Journey has been unique and exhausting but here is what I have learned.

The people I thought would be there the most.... are not! I am just beginning to realize that perhaps it is not because they didn't want to be, but more because they didn't know how. People I did not know a short time ago are here because they know the pain so well, here in lies a bond not many will ever share, and I could never express how grateful I am for it. People I have never met....care, and blessings are disguised in the strangest of ways!

Next Saturday, July 23rd will be our first Monster Mash! A fundraiser for our little Makayla! We hope to give her the best life she deserves by getting her all things that will allow her to be a kid regardless the cost. Most parents buy their kids a bike for a hundred bucks, hers will cost fifteen hundred! Most parents buy a potty for twenty bucks, hers will cost 900. Most kids can go to any park and swing all day if they wanted, Mak can't and probably never will. A specially adapted swing $700. The lists go on and on and therefore MONSTER MASH! 

However I have found this asking for help thing to be very difficult, I have a  little problem with pride and control so allowing others in to help is way out of my comfort zone but it has allowed me to see some good in the world again. I had started to become hard and bitter, let's be honest it isn't easy watching every other mother walk hand in hand with their kid and talk about why God made flowers. Since deciding to plan this event people I have never met have offered to help in a whole bunch of different ways. It's been pretty awesome! So to all you kind hearted people that do exist, thank you! It couldn't have come at a better time! 

4 years old and some spontaneous pain!

Well Miss Makayla is officially 4 years old. Where does the time go? I remember when she first got diagnosed and I said everything in terms of  ' oh by the time she's 5.....' well now that's only a year away!  Wow! I suppose all my hopes and ideas for how far along Mak would be by the time she turned 5 may not be met but my how far we have come. Her therapist ( one of many) said to me the other day, Makayla is one complex little girl! Boy I thought now there is an understatement! This same therapist told me the other day that she felt Makayla had  a couple of seizures that morning, she described this behaviour as Mak being very happy in an activity when suddenly she shrieked and her arms trembled leaving her irritated and unable to focus. Hmmm I thought, this sounds very similar to what I had been experiencing during the last few nights, I had taken some video just to show the unbelievable pitch of screaming that came out of a sleeping child. I had presumed pain, perhaps some sort of muscle cramping,   I also had seen her do it a few mornings earlier to the point of me taking her to the walk in clinic to have her ears and throat checked, ( she was pulling on her ears as if she hoped to pull them right off, cycled with biting her own wrists in what I can only guess as a behaviour to numb the pain!) Not much phases me after all I have experienced but to truly think about this, a pain must be pretty unbearable that biting your self repeatedly feels comforting,( this very thought saddens me beyond words that no amount of nurturing and love I have can soothe the pain).

After being instructed to send the neurologist a videoed episode of the torment this poor peanut experiences on an increasingly regular basis I finally caught what I needed. Today the Doctor replied that he felt strongly that these episodes were not seizure activity but rather a very rare form of spontaneous pain more particularly esophageal spasm that occurs in rare cases of infants and children with neurological disorders. The pain is sudden for unexplained reasons and is similar to that of the pain of someone having a heart attack. So his nurse sends me an article to read entitled infants and children with mental retardation suffering from paradoxyl blah blah blah. WORST TITLE EVER!!!! What parent would ever want to read something titled anything like that about their kid? Well I read it intently, and boy did the case study ever embody Makayla. Ugh!

Well the good news is no new anti seizure meds, ( thank the Lord!) There is medication that seems to slow the spasming down so starting on Monday we embark on a hopeful mission to end what most likely has been a 4 year mystery journey of pain for our monster. May there be peace at the end of the new medication rainbow!!!!!!

Stuff

It's wild the amount of stuff kids with physical disabilities need. Makayla currently uses a wheelchair at school, and an  enclosed walker (finally). At home we have a wheelchair stroller, and 2 walkers which were awesomely given to Mak by little friends of hers who are now running around (a little shout out to JP and Aurora)! We keep one in the basement for practicing but it seems to be a bit heavy yet for her to really enjoy using, and one that we keep by the door for outside and going places. I have just realized that the only way I can take both wheelchair and walker is if Daddy rides on the roof. (Not super practical) Not only is there a lot of stuff that takes up a lot of room but the chairs are so heavy. I am so not complaining It's just the little things that typical parents wouldn't think of. I am super thankful that we now have a wheelchair ramp going into the house, it has made life for our backs quite a lot better!! Next I am considering a teleporting machine!!! Any thoughts?? Now don't forget her AFO's or foot braces, and theratogs she wears with cable twisters to straighten her legs. Somedays it just seems like an awful lot of stuff to worry about and take care of.

Lastly, this week Mak had another appointment at McMaster with an eye specialist. She needs glasses!! Now to many this doesn't seem like a very big deal, and considering all we have been through you are quite right, but I was so upset by this news. It's funny the things that seem to throw you over the edge. I didn't cry when we filled out forms for a wheelchair, or walker, but eye glasses!!! It's not that it's a big deal, it's just one more thing! One more expense, one more thing to take care of, one more thing that Makayla NEEDS! I was sad to think that she has trouble seeing, as if trouble walking and talking isn't enough. And let's be honest here people how do you teach a monster to keep her glasses on her face and out of her mouth?? Makayla eats any and all inedible objects, it's what she lives for!! Ugh! It's simply one more thing! I realize Makayla will look sooooo cute, thats totally stating the obvious!! :)

A little story about a yellow walker

Today is a day of happiness. Makayla was given a new walker last week by a little friend of hers.( thank you) For some reason Makayla loves this walker!!! We have tried many and I do mean many different walkers over the last year. Most were seen as 'EVIL' for reasons I also do not know. I think a huge part of it is a sudden increase in awareness, but only Mak really knows. The point is this little yellow walker is totally awesome to Makayla so lets go with it. Over the last week I have been working with Mak to walk across the living room maybe 8 feet. Today I decided to take it to school and Mak walked from the car to the building and than down a very long hallway and than all the way back. She was so excited that she just wanted to keep going!! It was so amazing.

The challenge has been the fact that Makayla would not hold onto the handles of anything for any length of time. She loves to have her hand in her mouth or hold onto a favourite toy ( typically Buzz the bee!) She seemed to have no awareness for her safety and this caused some serious issues with trying to get anywhere with her walkers. But today she held on, she held on and she just went for it. Awesome is the word, simply awesome! and yes I have witnesses!!!

Why its so exciting? Well because as many parents of special needs kids will tell you the hardship is the extreme slowness of progress. There are days/ weeks/months/ years  that simply seem to go nowhere. All the effort of therapy and appointments and hard work on our part seem to be pointless at times. However than out of nowhere they make a huge gain! Today was that day!!

Some people say never, some say maybe, some say some day, Makayla said today!

Parents get to brag about their kids all the time, I never have gotten that! Until today! My Makayla has Cerebral Palsy and walked over 50 feet today with her little yellow walker!! Yeah Mak!

Things that make me cringe!

Makayla has taken up a new hobby! She likes to stick her hand down her throat and make herself throw up!! Why on earth is she doing this?? Well over the last month Makayla endured a chain of unfortunate events! She got the flu which caused some awful vomiting, which than turned into quite an ear infection which caused her little body not to keep anything down, which than lead to dehydration which sent us on a trip to the hospital. Luckily after some intravenous drugs, and lots of fluids through her IV we went home. Than a whole crap load of antibiotics! (crap load is my technical term) Somewhere in this mess of sickness Makayla got some strange idea that hey this whole puking thing is kinda interesting!! So here we are dealing with a new problem and a heck of a lot of laundry!!

Why this makes me cringe besides the obvious! Well Mak is already underweight, and lost almost 2 pounds while being sick, which is a lot on a mini person, and because of her high muscle tone she burns nearly 5 times as many calories as a typical kid. So if she keeps up this habit how on earth is she going to gain weight!!? Next is the effects of stomach bile (this  stuff is designed to literally breakdown food!). Imagine what it does to one's esophagus lining, tooth enamel, and gums! (I would like to insert curse word her but will refrain) Did you know that a bulimic's teeth are completely rotten?

What to do? Well mr. google found no magical answer, just a few other parents seeking advice! Her therapists and teachers are at a loss! So now we wait for a behavioural therapist! Who knows how long that list is. In the meantime LAUNDRY!!

Results and words

The results came back last week! I am happy to say that everything is negative! Makayla does not have any progressive or fatal mitochondrial diseases that they can tell at this time! What a relief! Now when I first read the letter I was relieved but oddly I found myself very annoyed as well. I felt like I had wasted so much energy and time not only my going through the whole procedure but also worrying about what may be! It took me about a week to actually feel the real weight lift off of my shoulders! We can move forward now accepting that Makayla is just Makayla. She is made uniquely and wonderfully! It may have been nice to have some sort of scientific and medical answers but I would rather no answers ever if the answers were worse than the unknown! With the unknown there are no boundaries, no limits to how much she can achieve!  Every day may be a challenge but every achievement however small or grand we will see as a gift perhaps even a a miracle.

"Serenity is not freedom from the storm but rather peace within the storm."

Over the last couple of weeks the silence was broken!!! Makayla is now saying 'Mama, Dada, Bob, bear, and yeah!' She is also finally waving bye bye and consistently saying please to ask for what she wants! Though the last weeks she has been sick and the days have seemed somewhat endless with fevers, and frustration, I feel there is light at the end of the tunnel every time I hear that tiny voice I have waited so long to hear! Ahhh serenity now!!

Year 4 so far

Year 4 held a lot less drama! (thank God)...... Makayla is not what I would consider coordinated and she has had some issues with cracking her teeth, and probably from a combination of her bodies crappy job at using nutrients and the fact that Makayla loves to eat any and all inedible objects, her teeth have paid the price this year. After knocking out the lower half of her 2 front teeth and the wait list for kids like her having been an entire year to have work done poor little Mak had to have the remainder of those teeth pulled out cause they were causing her so much darn grief. Now there is a sight, 3 grown adults holding a 28 pound mini person down in order to literally yank her teeth out ( barf). Thats right people she was wide awake 1, 2, 3 ... go!! I figured you were all wondering why that beautiful little smile was missing a few pearly whites!! Mak than chipped another and finally the hospital found her a spot to have it fixed along with a cavity!!! Most kids go in and say "ahhhhhh" to have a couple cavities filled, but not our Mickey Moo she has to go to the hospital for a day surgery procedure and be gassed asleep in an operating room. ( nothing like lying your 3 year old down on a steel table with a room full of strangers, watching as she loses consciousness and than walking away!!) However this is how it seems to go for Makayla!!!

Next came our neuromuscular specialist, who specializes in diagnosing rare diseases. Since Makayla's speech never came back, she is considered to have regressed. Regression is NOT a part of Cerebral Palsy. So he suggested that we do a new MRI which we are currently still waiting for seeing how the waitlist at Mcmaster can take up to 2 years. He also suggested we have a muscle and skin biopsy done to check for mitochondrial diseases ( I am often flabbergasted at the lists of diseases and disorders that exist in this world, one's that are next to impossible to pronounce) Anyways 8 weeks ago tomorrow we headed to McMaster hospital again to have this procedure done. At this point we have been getting use to the whole battle of the IV but what happened next was an absolute shocker for us! The sedation medicine used caused a strange reaction in Makayla's muscles unlike anything I had ever scene or ever hope to see again. Her entire body went into myoclonic spasm, she could barely breath and her eyes were bulging ( she was scared to death and so were we) the nurse held her jaw open so to keep her airway open  but after a minute or two it had not subsided. Next came a similar drug to what she takes at night to calm everything down. It worked and she relaxed but not before scarring us for life! The doctor than cut out a small chunk of muscle and skin and stitched up her leg. We are currently waiting for these results and it is not an easy wait.

Year 3.....continued

Makayla was transferred to a hospital in Orillia to be watched by her developmental paediatrician. We were there for a few days and then finally sent home! A couple of weeks later 911 again! Repetitive story thus far! However this time Mak was diagnosed with a UTI and we were admitted to Mcmaster hospital for another few days this time her bout of unconsciousness was followed by a very livid little monster! Here is where the doc in the emerge said 'why is she taking so many meds' a story I repeated many many times that day to many different doctors. During this stay we met Dr meaney!! that really is his name! However he is the nicest neurologist I have met. It was figured that the amount of muscle relaxant she was on had caused her bladder to retain urine and this causing the infection, than putting the body under so much stress causing it to seize. ( who really knows) Here Mak had her first EEG, which results didn't say much. Dr Meaney listened to me about the jerks Makayla had been experience since birth, he prescribed a new drug to deal directly with this problem something every other dr neglected. So we started weening her off of her anti seizure med and started her on her new ones. Makayla had other plans, she went off her meds cold turkey!

I have witnessed withdrawals from heroin addicts, this was pretty darn similar! Rocking in a chair holding Mak as tightly as I could all night long, night after night, and yes more screaming! I have believed in God all my life but in this moment I questioned everything. A sleep EEG was conducted at sick kids in Toronto, the entire process was  a nightmare all its on. Just imagine pinning this kid down well 50 electrodes are glued to her cute head, now keep her away from pulling on them for the next 12 hours!! The screen in our room told us that Mak had several seizures that night all coinciding with bouts of screaming and jerking but to throw us for a loop the results came back normal. (I have no explanation but something to do with a false positive) I didn't know if I could take it one more minute when suddenly the new meds kicked in!! The twitching subsided and yes people the child slept!!!!!!! Makayla slowly made her way out of an overdosed state and back in the world where hallucinations didn't exist. The tortured child slept and I slept! It wasn't as though she never woke up in the night again because she did regularly, but the pain, the fear and the screaming all disappeared. Thank you Dr meaney!!!!

Makayla was stable for a few months and the specialists had hoped that once she became stable and seizure free her language skills would come back. They didn't come back and so they decided to test her for a variety of rare diseases. Spinal tap number 2. After a team of nurses tried several times to get an IV started to put Makayla under the DR had to give her oral meds that calmed her down because she got so upset at this point that she was able to constrict her veins making it impossible to find a usable spot! Eventually the spinal tap was done. After 8 long weeks of waiting the results showed nothing. Relief but the mystery continues!

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!