Unanswered 5

Well the last  I wrote we were waiting for some scary test results for Makayla to find out if she had some progressive disorders. I realized that waiting to hear if your child's dying is something most parents will never have to endure. I have had to do this numerous times, will this time be the last? I really don't know, because officially AGAIN the Doctors have no idea why Mak is the way she is? Thats right, all results were negative!! Obviously this is great news however I found myself for the first time simply annoyed at the years that have gone by, the tests that have been done, the tears that have been shed, the googling that occurred, the STRESS that coursed through me, has all been for what seems like nothing!! Spinal taps, muscle and skin biopsies, numerous MRIs and EEGs, a butt load of blood work, urine samples, all done in tears and agony and all producing the same results of we don't know!! I know butt load seems like a very uneducated description but seriously the thought of all the damn needles just annoys me to the point of childish like tantrums and phrases like butt load!

The strangest moment I had in these final results is that for the first time in 5 years I officially allowed myself to acknowledge that this disability is forever. Don't for a second think that a disability only affects Makayla but it changes everything for everyone in our family. Great amounts of sacrifice have had to be made, and will continue to have to be made FOREVER! That's the word that got me so hard this time, FOREVER! I am going to be depressing for one moment and here it is: I may never have a conversation with Makayla, I may never walk hand and hand with her, I may never see her get married, I may never have an end to changing diapers (UGH), and I will never experience the empty nest syndrome!!  I realize that all you cliche people want to pick up the phone and tell me that all things happen for a reason, and God doesn't give me more than I can handle, and blah blah blah, I KNOW but I am sad and a little scared of the life I have been given and the long hard road it will be!! YES I will make the best of it and yes Mak is totally blessed to have such an awesome mom!! ;) Its just that sometimes forever sounds really long!

I have many girlfriends who have special needs kids and they have had weird conversations about when their kids hit puberty and things like this,  my participation in the conversation was putting my fingers in my ears and saying 'la la la' like a 3 year old. I wasn't even being funny, I was totally serious! I guess that's the denial they talk about in the grieving process! Denial......check!

So now that I've dealt with that I'll throw in some super optimism for ya! Makayla turned 5 years old on Monday!! She has come a very long way in the last year, particularly in the last 2 months. I had last blogged about all the supplements I had started her on and how I thought they were helping, well I am happy to report that she continues to make gains more than ever before! She is now on a gluten and casein free diet and boy what a difference!! She is happier, and way more engaged! She is also now saying 4 syllables, including saying 'bye'! The other day when the dietician was leaving, I almost fell over but instead I just jumped around and a had a little party all by myself! Ahh its the little things!!! I suppose that's the good part of every test being negative is that Makayla will not be defined by what others have achieved or not achieved but rather anything is possible!! I guess this is the beginning of acceptance!! 

2 notes!

     So you may have noticed that I haven't blogged in quite some time. I do much better in retrospect rather than during the midst of the storm. I guess I need time to digest all that takes place before divulging all my feelings to others. We have been waiting for many many test back since July if you recall. Most were normal but a couple things were a bit strange! The genetics we are in involved in now are so complicated so I will give you the short form. Makayla has a high level of lactic acid in her blood, what does it mean exactly, I don't know. She also has a high ratio of VLCFA of the C22/C26.     ( told ya it was complicated) So we have done more blood work, another 6 tubes! ( that's right 12 tubes from July just wasn't enough!) They are rechecking both levels again to make sure it wasn't just a fluke, but also testing for the related gene disorders and diseases. Makayla fits a lot of the profile of a number of disorders linked to the POLG gene sequence ( Alpers disease) as well as rare mitochondrial disorders ( Batten Disease). Keeping in mind that this is not the first time something has been strange in the midst of blood and urine testing, we wait patiently for what could be life altering news. To top off the stress of this torturing wait next week Makayla will undergo her second sedated MRI and an Echocardiogram at Mcmaster. (Your prayers are always appreciated.) And because that's just not bad enough she is way over due for new splints which means new casts which means an hour of torture for both her and I. ( I curse at the very thought.), ( no not out loud mother)!!!

      However on a second note!! I have been in contact with someone who specializes in fatty acid supplementation! Through a strange twist of fate or by the awesome hand of God, I received his brochure and decided to give him a call. he seemed very knowledgeable on the subject to the point of describing many of the symptoms of Makayla and even the background of our family. ( I was really intrigued after speaking with him and set out on a mission to immediately get every supplement he recommended!) He did this all for free might I add! In the meantime I also had started dealing with depression and exhaustion, so I also started taking what he suggested. I can honestly say that it has been almost 3 weeks, and I feel so much better, but better yet Makayla is doing really well. In just the last 4 days she has begun to say 'Mama', again, and sign please, yes, and more again!!! She also just seems more with it, following some direction and taking turns with me! She is also clapping like a maniac again ( something we hadn't seen in over a year!) AWESOME!!!! We played a funny game we made up today and for the first time she totally understood it and we both laughed endlessly over taking turns! ( when I ask her what a baby says she will say 'googoogaga', the greatest sound!) Her babbling is much more creative with syllables, and her ability to sit and play in one area is lasting more than 4.6 seconds! For the first time in what feels like forever I feel truly HOPEFUL regardless of anything else. That;s it for now folks, stay tuned!!

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!! :)