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!