Another kick at the can

So, after many months of daily nudgings to myself to write new posts on Maclain's blog, I am finally back in the saddle. I have no excuses really, it just seemed like I never got around to it at the end of every day. But I realized I really missed my writings and ramblings. Regardless of whether anyone reads them or not, the posts let me get some things off my mind and my chest.

We have had an extremely busy summer. After a month at the conductive learning centre in Michigan, we continued our conductive education sessions privately with a conductor from Hungary. For 3 days a week in July and 5 days a week in August, we spent 3-4 hours a day doing therapy with 4 other little ones. I don't know if I would say it was the best therapy ever, but it was consitent and it ensured that Maclain got conductive ed on a regular basis this summer.
Come October, we will be starting at the March of Dimes again for 2 days a week, 3 hours per day to participate in their new preschool program. Mac will also be going back to the Oakville Parent Child Centre for 2 days a week for integrated preschool. And then of course we will have our regular PT,OT and AVT sessions weekly.

I find lately that although Mac has made many strides over the past few months, I seem to be more down in the dumps about his CP. It's almost like once he learns something new, or accomplishes something, I get too excited and my expectations soar. It then takes me a good few days, or weeks to come back down to my "take one day at a time" thinking.

We also had something else exciting happen this summer. Mac turned 3! It was a day of mixed emotions. So blessed that he is here and a part of our life, but still sad that his brother Braden is not with us, and that Maclain has had to overcome so much in his first 3 years. We did have a great day overall, and his party was wonderful. This was the first year he had his own little friends at the party, and not just family friends, or Chase's friends. My little boy is growing up!

Receptive Language

While we were at AVT therapy this morning, our therapist Julie, who was reviewing the latest report on Mac's progress, noticed that he as been attending AVT for almost 2 years now. I was totally blown away. 2 years already. She remembered when we used to bring him in his infant car seat, and how little he was. It suddenly brought back all of those memories of when he was diagnosed with his hearing loss. We recieved that diagnosis even before his CP diagnosis. He was only 8 months, or 5 1/2 months corrected when he started going to AVT. All we knew at that point was that he had auditory neuropathy and was severly affected. We thought his delays in reaching his milestones were purely because of his prematurity. I think back to those early days and realize that if a hearing loss was all we were dealing with, life would have been a piece of cake! But at the time it was just one more blow in a serious of blows that started on August 2, 2007.

I started to think in the car about whether or not he had made that many gains in AVT over the last 2 years. He isn't talking yet right? But then I shook my head and focused on what he has accomplished. His receptive language as an example is fantastic. He is right where he should be for a 12 month old, which is what he is for his "hearing age" His implant has been activated for almost a year now. He understands his name, and the names of certain things, he listens to everything that goes on around him, he can localize sounds and he can associate certain objects with their learn to listen sounds. His cognition has improved leaps and bounds because he can now hear books being read, and listen to cartoons on tv, and hear songs playing. His latest mapping of his implant was incredible, They said it was the most accurate to date, and he gave the most consitent responses, so we know that this map is even better than his last ones, which will make it even easier for him to decipher speech and other sounds. This is incredible considering we were initally told that children with AN would not receive any benefit from an implant. Fighting for his CI was probably the single most important thing that I have done for him to date. It has opened up the world to him and made it possible for him to learn to read and speak, and learn. I am also confident given how much he babbles, and the new sounds he is constantly making, that he will one day have speech. My biggest goal was for him to have access to sound, and now he has it.
I also figure that with a mom and brother who don't shut up, he is genetically disposed to being a blabber mouth.

Here is a pic from his surgery over a year ago.

Give me an "M", give me an "I", give me a "C".....

....given me H-I-G-A-N..that spells Michigan.
In our ongoing quest for therapies and therapy centres, I came across another center that offers Conductive Education, and really seems to have an interesting program, so Mac and I are headed there in May. Why not go back to Milford you may ask? Well, since I do not have a built in censor button, I will tell you. I don't want to give my money to a greedy, money focused, bad business, dis-respectful, arrogant, person. I have nothing but great things to say about the 2 conductors that work at Ability Camp, but the place itself is shameful, as is the Director. I told myself that I could put up with the sub-standard and dirty living accomodations, and being in the middle of nowhere, because I was sacrificing this to get Maclain what he needed. But then I started to think, why does it have to be like this? Surely there have to be other places that offer CE in a cleaner, friendlier, more professional environment, where parents weren't talked down to, and the accomodations didn't smell, and wasn't so depressing. I am constantly shocked by some of the individuals involved in the special needs world. So many lack the empathy, compassion, and respect that they should have towards us and our kids. But instead they seem to pry on us because we are in a very vulnerable place in our life, where we would do ANYTHING to fix our kids. I will not go into any more details for fear of being sued or something for defamation, but I will say this to that individual " SHAME ON YOU"

So off to Michigan we go. I am actually quite excited. I have heard great things about the program at the Conductive Learning Centre, and we are going to put Mac into a program this time where I will not be with him for the sessions, and I am eager to see how he does. The price is less than half of the program in Picton, and we are staying at a local hotel with fantastic rates for families attending the centre. I hope it is a good experience for us, and I look forward to Maclain making even more progress. I am very comitted to CE, and I think that we will get alot out of this next experience. I could be making a big mistake, and be wasting our precious therapy dollars, but I don't think I am. I have faith that the conductors at this place will be just as dedicated to the kids, and Mac will get alot out of it. And let's not discount the fact that there is a Target where we are going....a happy mommy is a happy kid!

He is doing so awesome and I am so proud of him. His head control is getting really good, and everyone has noticed. He is pooping on the potty more and more, and is making new sounds every day. I am so blessed to have my two boys in my life!

Patience is a virtue

I have no patience...never have, never will. And anyone who knows me would fully agree. I hate waiting in line, busy signals, traffic jams, commercials, and so on and so on.
Everyone told me that when you become a parent you learn to become more patient. Nope, never happened. When Chase came along I didn't miss a beat, and continued with my impatient ways. Probably the reason that Chase is the second most impatient person I know.

And then comes Maclain......

In the NICU this is what I heard; "be patient, he will get bigger and stronger", "be patient, he will learn to suck and swallow", "be patient, he will figure out how to breastfeed", "be patient, give him time, he will figure out how to breathe on his own", "be patient, one day he will be big enough and strong enough to go home".
Then I started to hear; " be patient, his milestones will take longer, he is a preemie", "be patient, he had a rough start", "be patient, he will do things in his own time".

I was forced to try to embrace a wait and see attitude, but I just can't believe that "good things come to those who wait". That attitude would not have gotten Maclain a cochlear implant, or access to valuable early intervention, or the equipment he has needed. I wish that I could sit back and relax and just let him be, and see how he develops over time, but I can't. I need to know that I have pushed and prodded, and have done everything I can to make sure he has every chance in life to succeed.

So as much I would love to stop and smell the flowers, I think for now I will be out catching that worm.

Wordless Wednesday

Ok, well not totally wordless, because that wouldn't be the true me, but I will save my next blog topic for tomorrow....

Kernicterus is a 4 letter word

Blame is such a powerful word. No one ever wants to be blamed for something, especially when it is something bad. As a mother of a special needs child, I spend a good part of every day in a blaming frame of mind. I blame myself for what happened to Maclain, I blame the government for not providing enough funding, I blame our therapits for not doing enough to help "fix" Maclain and so on and so on.
It turns out that in Maclain's case, the real blame is on the doctor who was supposed to be helping him while he was in the NICU. Maclain has a condition which is known as Kernicterus. It is what has caused his CP, his hearing impairment, and a few other issues. And the worst part of it all, is that this condition is 100% preventable. Kernicterus is caused by too much bilirubin in a baby's system. Or in more laymen terms, a baby gets Kernicterus from untreated jaunice. If the doctor who was treating Maclain in the hospital had of paid attention to the obvious clinical signs and put him under the bili-lights, our life and Maclain's life could be dramatically different. Unfortunately we will never know because this doctor chose to ignore these signs, choosing instead to believe that Maclain was suffering from a brain injury caused by his twin to twin transfusion which was not the case. I sometimes wish that his issues were caused by something as unavoidable as TTTS, because it would have been something that would have been out of anyone's control.
It saddens me when I hear about kids who have been affected by this condition, because it should never happen. Here is a link to a site for Parents of children with Kernicterus.

People, people, there is only so much of me to go around......

So, I used to consider myself a multi-tasker, and to some extent I still am, but balancing the daily tasks in life are so different then balancing all that is required in caring for a special needs child. Not to mention setting major expectations for myself and my kids.

As I have mentioned before, we participate in mutliple therapies, and if I had my way, I would do even more. But until the publisher clearing house van pulls up to my door with balloons and a life sized cheque, we will have to stick with what we are currently doing. ( ok, I may add in horse therapy, but who's counting)
Ok, so anyways, every therapy has goals, tips, tricks and to-do's that we need to work on, and every therapist has a set of expectations which ultimately end up in a report that I have to sign, but don't always want to read. I feel sometimes like I am dating mutliple men at once ( just a metaphor honey) and that they are going to find out about each other soon or break up with me because I can't keep up with their demands.
Here is an idea of the battles that happen in my head every minute of the day as I try to figure out what they hell I am doing for Maclain.

Conductive Education, which I totally believe in, which has overtaken my basement with wooden furniture, and which sucks my money out of my account, but I see the most promise with. They want me to date them exclusively. No exceptions. CE believes that if he and I are exclusive, my life will be full and functional and independant. But how do I keep Occupational Therapy happy when Maclain has to sit at a plinth for eating and playing, where he is not totally supported, which OT says we need for him to learn to maximize his fine motor skills. And what about PT? They would love to have Maclain in a stander so he can bear weight on his legs, and a walker that will help him be independant. CE would slap me if they heard me mention those things. But I become confused when I try to balance the value of Maclain learning how to walk one day on his own, but giving up his ability to explore his environment on his own in a walker that he can use by himself. And then we have AVT therapy which wants me to focus on having Maclain listen, but which requires me to narrate my entire day, use visual reinforcement and now tactile input to help him develop language, which needs to happen in an environment where he doesn't have to work on anything but listening. That would almost involve me doing no other therapy but AVT if I one day hope to have Maclain talk. And I didn't even mention the time I spend setting up doctor appointments, assessments, pre-school meetings. Oh, and we are going to start trialing a communication system soon, so there is another person we will be dating.

If this were truly a dating situation, I think I would break it off and just be single!

So my latest struggle is how to make CE a part of our day, while trying to make sure that we have the appropriate "equipment" for Maclain. And how we work in all of the other things we need to practice in a day while working through our new CE schedule. Oh, and did I mention that I also have another son and a husband? Just saying.....

I tell you, if I wasn't already crazy, I would have no trouble getting there in a hurry.

Fundraising

I have missed a few days since I posted last. Do I have an excuse? Sure, I have 1000 of them, but so does everyone else. When I run, I actually blog in my head, and they turn out pretty good, but of course, by the time I get back from my run it is gone from my head. And I thought about recording it as I run, but that would take more energy and concentration than I have or could muster up.
So, I write down my thoughts in point form and hope that it all comes flooding back!

Ever since we received Maclain's diagnosis of CP, and my googling reached new levels, one of the key things that I have worried about, and have kept me awake at night is "where is all the money going to come from" to help.
Here is a rundown of our special costs of caring for Maclain to date.

Ability Camp x 2= over $11,000
CME therapy x 15 sessions = $1800
Bath Chair $1000
Special toys $1000
High Chairs and seating $1000
Shoes $400
Therapy Equipment $3000


Some of our future costs

Ability Camp- $5,300 per 5 week session as often as possible for best results
Therapeutic Riding-$35.00 per session, once per week
Seating System-$3,000
Stander-$2500.00
Communication Devices- $5,000
Conductive Education through March of Dimes $46.00 an hour
Walker $1000
....and so on and so on and so on

To quote the Barenaked Ladies " if I had a million dollars", this part of my stress would be a non-thing, but alas, my ship has not come in, or rather my lotto numbers have not come up.

Which bring me to the reason for my post. You know, pride is a funny thing, it causes war among men. And it makes it hard for proud, self sufficient, hard working parents, to accept help because that means that somehow we have failed, and we need to admit that we need help.

Some wonderful friends of ours, who didn't listen to our protests, thank god, put together a fantastic fundraiser in October called Raising the Roof for Big Mac. It was a tremendous effort from some incredible people, and we were fortunate to have raised enough money to come back to Ability Camp. To this day, my heart warms when I think of that awesome night.






Another fantastic act of charity that came our way, was as a result of someone who had heard about the event for Maclain. The dance troop that her daughter belongs to decide on a charity or fundraising drive for someone in the community at Christmas, and they chose to help Maclain. I don't think there was a dry eye in the house when I got up on stage to thank them for their generousity.

The only challenge with fundraising, is that typically it is not a one time gig, unless you have a specific goal in mind for a one time event.
For us to be able to help Maclain live an independent and functional life, we need to get help financially from other people because we simply cannot do it ourselves, and god knows the government does not help in any great way.

So as I think about the future and I research the next steps in his care and therapy, I have also come to think about planning another fundraiser. This time, I hope to be able to do alot of it on my own, so I don't have to burden other people who have busy lives themselves. I am also going to set up an area on my blog, where people may donate if they like, and I will keep a running tally of where the money is going, and how it is helping Maclain.
And in the meantime, stayed tuned, because the wheels are turning, and I hope to have another fundraiser come the spring or summer.

Wow, your son is so well dressed and well cared for.

Someone actually said this to me one day not too long ago, after the woman asked how old he was and then made "the face". You know, the face that says " really, he is 2? And not walking, and not talking?" So as usual, I went on to explain that he has CP, and her response was the same as the title of this post.
Ok, lady, what would you expect? That because he is not "typical" that I would just leave him dirty and unkept? If anything, I go out of my way to ensure that Maclain is always well dressed and well groomed, as I did and do with Chase. Research actually says that people and kids with CP who present well and are well kept tend to be more respected, and better treated by society. That is not why I do it though, I do it because I LOVE MY KIDS, and I am proud of them, and I like them to look nice and I want them to learn to try and be presentable.
It just irked me that someone would make this comment.....if Mac was walking and talking and had a face full of chocolate and ripped and dirty pants, with disheveled hair, nothing would be said except maybe something like..."oh, how cute, boys will be boys".


So that leads me to the second part of my post.
I have had the privilege to meet a wonderful woman by the name of Dana Florence. She is the mom to triplets, all of whom have CP. Yep, you read that right, they all have CP, and the two boys have auditory neuropathy just like Maclain. Their names are Taylor, Cole, and Brody and they were born at just over 25 weeks gestation, and they turned 2 on January 1st. These kids are beautiful and loved, so loved and their mom is truly incredible. There are so many days when I feel sorry for myself, and as most people know, I have my issues with depression. I say the same old line " why me" and to this day I have never received an answer to this question. But then I meet this woman, and I think holy crap. Really, that is what goes through my head. How does she do it? And she doesn't just "get by". She goes above and beyond to make sure that her kids will have every chance in life. Another mom here at camp asked her how she can be so happy all the time, and Dana replied " what other choice do I have? If I don't have hope, what else is there"? It really helped me to put some of my own issues in perspective. And I know I said they are loved, but it's not just that, they are all so happy, and the look that she has in her eyes when she is with them.....sigh....if you could harness that look and bottle it and sell it, I swear it would bring world peace. I pride myself on how much I do for Maclain and how hard I work to bring him every opportunity to have a wonderful life despite his challenges, and here is a woman who is doing the same, but times 3. Can you even imagine?
Oh, and top of that, she has started a foundation to raise money for stem cell research to find a "cure" for CP. Like having triplets alone isn't enough, not to mention triplets with CP, but then she starts a foundation to help OTHERS!
Her website is http://threetobe.org/

THREE TO BE is a foundation working in partnership with The Hospital for Sick Children & Bloorview Kids Rehab, to support the development of new treatments and therapies for children’s neurological disorders. There are presently no foundations or agencies in Canada aimed at funding research and therapy for this broad spectrum of disorders, which range from Cerebral Palsy to Epilepsy to Autism. THREE TO BE stands ready to fill that gap. We are passionate about developing the organization to advance these fields of research, and to make a difference in the lives of many children living with neurological disorders

Check it out. They are having a fundraiser in May, and I know I will be there for sure.

I think sometimes that God gave me Maclain so that I would meet other incredible people whose aquantaince brings me inspiration.

Home Sweet Milford

So, we are back at camp again for 5 weeks. I have been both dreading and looking forward to this moment since our last day of camp in June.
Given my state of phyisical and emotional fatigue, this post will be both a rant and a happy post all mixed into one.

Being at Ability Camp is the hardest thing I have ever had to do in my life. It is not the physical part, but how it affects my emotional state. It is a slap of reality when we walk through these doors. Don't get me wrong, I am extremely grateful that we are here, that we have this opportunity again, but it is so hard to believe some days that my little guy needs all this help. For someone who rarely cries, he spends a good part of his morning and early afternoon in tears. But you know what? While it breaks my heart that he has to work so hard, it puts a huge smile on my face when I see what he can accomplish. Even from the last time we were here, he has improved so much. It is so hard to make sure I cover off on all of the things I need to do for him on a daily basis from a therapy perspective, but conductive education helps to roll everything together. In our 5 hours of classroom a day we cover eating, potty training, standing, sitting, singing, speech therapy, socialization, walking, stretching etc. I feel like even though I am not sitting in front of him working on his hearing and speech, he is getting so much through what we do all day. It helps ease some of the burden of worry that I am not doing enough for him. Do you know how good it feels to have him poop on the potty twice this week already? When he does something like that, it almost feels "normal" and we can just relish in his accomplishment.
These kids and parents work so hard, and I know that the rewards for this hard work will be there when it is all said and done. I just wish that we had the resources to do this therapy all day everyday. It is so frustrating that the people in the UK and Japan and countries like that have realized the tremendous value that conductive education can offer to our disabled kids. But our fine country doesn't believe in the benefits, and therefore there is no government funding or even insurance coverage for such a wonderful program.
Ok, I could write about this all day, but the bottom line is I am thankful we are here, I can't wait to see what these 5 weeks brings us, and the weather has been good enough for me to squeeze in a few 5km runs. So in this moment, in a place called Milford, all is right with the world.





http://www.abilitycamp.com/

Where did all the twins come from?

Ok, so no offense to anyone who has twins, or multiples, but my rant today is about the sudden appearance of twins everywhere I go.
When I was pregnant with the boys, I didn't see ANY twins anywhere, although I did know another mom who was pregnant at the same time with identical twin girls, who although having TTTS for the whole pregnancy were born fine at 36 weeks.
Now is seems I see them everywhere I go. Where did they all come from? I get that I am bound to run into twin sets when I go to places like McMaster, or Sick Kids, or places like that, but why do I see them now at Price Chopper, walking down third line while I am trying to run to clear my head, the zoo, the mall, Starbucks, etc, etc. It's not like I begrudge anyone who has healthy surviving twins ( ok, maybe just a little, if we are being honest) but every time I see them I can't help but think " Why me?". And don't even get me started if they are identical twin boys.
And one more thing, why does just about every woman I know who gets pregnant, wishes for twins? I wouldn't wish that potential complication on my worst enemy.


Ok, enough with the feeling sorry for myself for right now. Onto the good stuff for today!
Maclain did great at therapy today. He is just getting so much stronger and he tries so hard. We have had alot of transition over the last few months, and it has taken him and I some time to adjust to our new therapy team, but so far his PT is on my good side. She is so positive and really gets excited when he does something new or gets better at something. And she is so positive about what she thinks Maclain will achieve over time. If I can make it through a therapy session without crying, or at least getting the teary sting in my eye, it is a good day, but with our PT sessions, I don't get the stressful worry, I just enjoy all the hard work Mac is doing, and see how much stronger he is getting. It takes so much of my energy mentally to get through the day these days, let alone through all the therapy sessions, but his new PT makes it a little easier!
And as a side note, with his new haircut, could he be any cuter?

It takes 21 days to form a habit

As you will see by the date of my last post, the good intention I had of starting and maintaining a blog about life with Maclain fell by the way side. I have wanted to do a blog since he was born, but the CP, doctors appointments, Chase, life, work, therapies etc etc got in my way.
BUT, I am committed this time to make this a go! I need it for my sanity, and I hope that everyone one who reads it gets a laugh, or some new information, or sheds a tear, or is able to relate something I have said to their own life.

I figure if I can start running and have kept it up for over 4 months now, I should be able to find 20 minutes a day to record the goings on in our life. I have also decided that going back and trying to capture 2 years worth of our experiences might be a little tedious, so I when I have a post that may allow for some past history, I will be sure to include it.

So, without further ado, he is the first of the new posts!


It seems that most of the blogs I follow have a "thing" that they do, that makes them a little unique, so my "thing" is going to be that I will start each new post off with a rant of some sort. It might be related to a therapist, or a doctor, or my husband, or Chase, or the dog, or the guy who cut me off on the highway, or the rude barista at Starbucks. But I figure if I can get a rant out of the way early, it will make the rest of the post more pleasant!.


Government funding.

I can't even begin to articulate how I feel about this topic. How hard it is to know that we, along with many other families are sitting on a wait list for SSAH, some up to 2 years, while a 16 year old mother of 3 by 2 different baby daddies uses her welfare and other gov't funding to buy smokes and scratch tickets. There has been no "new" funding for SSAH for a few years now. Any money they receive each year goes to the people who are currently receiving the funding, which leaves nothing for the "newbies". It's not like we need this money for hot tubs or european vacations, we need it for respite care, therapy, equipment etc etc. But, so long as that 16 year old gets her smokes, I guess I shouldn't complain about the inequalities in our funding systems.
Did I mention how I feel about the government grants being given out to researchers to monitor the fertility cycles of the naked mole rat, or something like that? How about more research grants to cure cancer, or use stem cells, or something life changing? But what do I know?
In case you are curious, here is a link to the SSAH program.
http://www.mcss.gov.on.ca/mcss/english/pillars/developmental/programs/family_support.htm

On a nice note, I am so excited to see Maclain using more switch toys. We have been working to find ways for him to communicate and express his wants and needs while we work on his receptive and expressive language skills. He has been using computers a modified mouse, and something called a Big Mack switch ( how fitting) that we can record messages on. As an example, we can record" more bubbles, bu-bu-bu" and when he pushes the switch button, the message plays and I blow more bubbles for him. His face just lights up!
We use his left foot ( yes, that is a movie, how ironic) because his control and tone in his lower half is so much better than his upper half. So for the purpose of consistency right now, this is how we use them. We are working to evaluate what the best system will be for him going forward, but for now this is pretty exciting and fun too. How nice it is for him to be able to activate his own toys without us doing it for him. He really is learning the cause and effect of things now.
http://assistivetech.net/search/productDisplay.php?product_id=10719

As for me? I ran over 7kms yesterday with my good friend Laura and it felt great. My life has been so out of control for the past two years, and continues to be out of my control, that running gives me some sense of control. Plus I get 40 minutes or so to myself with my thoughts. Some days they are good thoughts, most days they are hard thoughts, but either way I am able to explore them without someone bugging me.

Ok, off to get Maclain up from his nap, and then figure out something creative for dinner.

Agnew out!

About us

Well, I could write forever about myself, as it is such a fascinating topic....haha, but my life is really all about my family

I am married to a wonderful guy ( Graham) and mom to Maclain, and also my first born pride and joy Chase, who was born at a whopping 10lbs, 3ozs on November 20, 2005.

We live in Oakville Ontario, which I am positive is the lululemon, starbucks, BMW, platinum amex card, live-in nanny, captial of the world. None of which I have the privilege of.

Welcome

Well, after many many months of reading other people's blogs and finding comfort in their stories, I decided to start one of my own.
The hope is that I can keep our friends and family up to date on what is happening in our lives, and to report on all of the happy, sad, good, bad, news about my littlest one Maclain.

For those who don't know, my son Maclain was born on August 2nd, 2007 at just under 30 weeks gestation, weighing 3lbs, 7ozs. He is an identical twin, and his angel brother Braden passed away from actue twin to twin transfusion http://www.tttsfoundation.org/ a few days before Maclain was born.
As a result of this trauma, Maclain has been diagnosed with Auditory Neuropathy http://auditoryneuropathy.tripod.com/ANindex.html, and CP http://www.cerebralpalsy.org/
He suffers from hypotonia and some dystonic movements.

While it is a life I would never, ever have imagined, or wished for, it is one that I think God planned for me. I believe that I was meant to be my little Mac's advocate, and that this is the way that I will finally learn to embrace patience.
He is a beautiful, loving and happy little boy, who will continue to amaze us with his strength, determination, and spirit.

I love you Maclain!