Buggies For Good Program - Our Story

My second son, Cameron, was born two months early on New Years day in 2008.  He spent one month in Waikato NICU and came home discharged as a healthy baby, with all the best wishes.  It soon became apparent that this wasn't the case, and in May 2008 he was diagnosed with Cerebral Palsy and epilepsy.  I have owned Mountain Buggy prams for 4 years(just a beginner really!) - starting with our black Urban Elite in 2007, and then our lime/black Swift in 2009.  Even though he was underweight and had virtually no muscle mass, he was difficult and heavy to hold because he had no control of his head - heads are heavy!  Our Swift went everywhere with us and was so easy to use.  We also got given a buggy from his physio therapist to aid in postural support.  It was heavy, bulky, difficult to fold(and came in two parts) and yuck!  No matter how good it was for him!  Being the buggy connosieur I thought I was, it just wasn't up to my standard and I often alternated it with his MB.  With the MB, I often took it out just to blend in and pretend we were the same as everyone else. 

In July of 2010 Cameron got a wheelchair.  Apart from having wheels, it is nothing like a buggy.  It has no hood, does not lay back like a buggy does and is about 10x the weight!  We have to face that Cameron will need a wheelchair for a good part, if not all, of his childhood at least.  It is our future, but as Cameron is only just 3 years old I'm going to be squeezing in as much buggy time as I can!  My main concern was protection from the elements of the weather, both sun and rain.  Being that we had no hood, we had no place to attach shade or weather cover.  I walk everywhere, and no matter how much sunblock we applied when we went out, with the start of summer, Cameron would come home with his knees roasted.  When I go out in the sun, I like to keep in the shade as much as I can and it just didn't sit right with me to have my son so exposed to the sun - especially as he was sitting still, strapped in, he couldn't shield himself even if he wanted to.  A hat wasn't enough to protect his body.  I looked into hoods and shields for the wheelchair and was told that they didn't "do" them and to walk along holding an umbrella - not practical!  Finally I found an umbrella that attached to the wheelchair but it was so big I couldn't see past(or over) it!  I reverted back to his Swift more and more, but because he can't support himself in a sitting position, he was fast running out of lying down room. 

I knew that Mountain Buggy used to make a special needs buggy, to hold bigger children, and I began making enquiries.  It was a lot of money and at the time I had no hope of coming up with the cash to buy it.  I even found another Mum on the MB Facebook page that had the special buggy - so I was seeing pictures of just how good it was and what it could do out in the open that the wheelchair could never do - from shading my child to going on the beach!  I made yet another enquiry and mentioned that I was going to try and look into community grants and funding.  A change in circumstances for our family meant that we could not afford to buy it ourselves.  It was at that point that I was introduced to the program Buggies for Good and was given an amazing offer - Mountain Buggy were GIFTING our family with their special needs buggy - Ranger.  I did what any woman would do when faced with great news - I cried!  I just couldn't believe the generosity of the offer, from a company whom I thought was there to primarily make money.  I quote from one of the emails I received from them - "sure, we are a business, but we're a business made up of real people, mums and dads trying  to make a difference!"  The difference this buggy was going to make to our family couldn't be put into words. 

As a thankyou, I decided the best I could do was donate our Swift to their cause - Buggies for Good.  It was coming to the end of it's useful life with our family anyway.  It was in excellent condition and could have sold for a great price, but I couldn't do that, knowing I had been gifted a new buggy already.  I wanted to share the same joy and give a gift of our own.  I suggested to Mountain Buggy that a family be found within the charity True Colours.  True Colours is based here in the Waikato and directly helps our family out - they are a charity of counsellors, therapists and private nurses that gives whatever help is needed to families that have a sick, disabled or life threateningly ill child.  I thought how fantastic it would be that a family with parents that don't have a lot of money because they are at home caring for their child and cannot work to get a buggy!  Too often I have met families in this situation, they afford not much more than the necessities of life, and getting out and about is made harder still by the care they dedicate to their child.  A family like this could really use a MB Swift - they cannot buy it themselves, but it is perfect for them - being small and narrow it can fit on buses and is so easy to take around for hospital trips, sitting in doctors offices and in lifts getting to and from all the different appointments and procedures they may face.  Mountain Buggy also thought this was a fantastic idea so at present our old Swift is down in Wellington, getting a facelift, and will soon be shipped back here to Hamilton where True Colours will present it to a family that will no doubt do what I did when faced with the gift of a buggy to make their life easier - cry with gratitude, thanks and appreciation!

Thankyou Mountain Buggy.  I hope that you can sense just how much this means to my family.  Buggies for Good really is good, and I hope with many more generous donations from the public that the scheme continues for good!

Ranger goes to school

Well we're really enjoying the Ranger.  Took it to school yesterday and Cameron got nice and comfortable and fell asleep in it.  Kept his head up too!  Way to go my boy.  I am really enjoying using a sturdy Mountain Buggy, it feels good and looks pretty good as well! 

EXCITING STUFF!  True Colours are going to be the recipients of Buggies For Good with my Swift!!  True Colours help us a lot with Cameron and all things disability related.  I approached MB and asked if they would consider donating to True Colours so that a family or two with a sick child could use a Mountain Buggy.  It's all happening very soon and I am so excited, and well pleased to be a part of something so darn cool!!  MB will refurbish and fully service my Swift, and then courier it to True Colours here in Hamilton - who will then decide on a family who they think will really love and appreciate a buggy.  When you have a sick child, it's not always possible to work, in which case finances become tight and often you just get by and feed the family.  A new set of wheels will enable some families to get out and about more, easier access to hospital appointments and much needed fresh air and time out.  The good thing about Mountain Buggy for this job is that they can take a bigger and heavier child, and extra goodies that some parents have no choice but to carry around.

This blog isn't quite turning out to be as deep and meaningful as I would have hoped - yet.  I'll just blame it on having so much else to think about.  Cameron is starting daycare very soon.  I wanted him to go to daycare so I could start to study nursing.  I can't do that at the moment because he needs a lot of time to ease into daycare, and he is only funded an ESW for two days a week, which is no where near enough to do full time study.  Don't want to do part time because you only have 5 years to start and finish nursing.  Plus, Cameron's respite care place said that he won't handle five days in care.  I have deep reservations on if he's even going to handle two days.  We. Will. See.  It would be nice though, if some things were normal.  If it were a case of simply dropping him off.

SOTD

Solution of the day.  No, there won't be a mundane short update every day!  At the moment I'm trying to document my attempts at better posture for Cameron in Ranger so that we can USE it heaps :)

As you can see he is not sitting 100% straight, but I never expected that.  What you CAN see is him in Ranger, at the end of our trip to The Warehouse with his head upright and his body in a relatively comfortable position!  A couple of times on the journey he dropped his head but I can reach through the gap at the side under the sun hood and quickly correct his head.  The test will be how he goes when he is asleep but so far we are much better.  What I have done is put a pram pillow under the board at the bottom so that rather than follow the contour of the buggy seat, it is sitting flat(higher than it was at the back) so it has tilted his pelvis forward.  I put his grey carseat insert in upside down so he has more support further up his sides rather than in his legs, and I lowered the head pillow ever so slightly so it is at his neck and not his ears.  It's all very "bitsy" but if it proves to be effective, I think it will be easier for someone to make us a proper insert.

You can see here he is sitting at a "socially acceptable angle" - that is one that won't attract comments from concerned people walking past.  Of course this buggy seating is not at a "physio therapist acceptable level" but again, it never will be.  But his neck isn't dragging along behind him, he is pretty happy and he is out of the sun(and soon to be rain).  The exposure he has been receiving to the sun was unacceptable to me.  Yes, he'll still get hot in this buggy, but he won't be in direct sunlight which I believe is wrong.  Especially for him who can't tell me how he is feeling.  Hopefully we can also correct some of his body posture when he gets his new CharleyWrap - that will be another major development, in the right direction!

Out of the gate and off for a walk...

My son Cameron recently was lucky enough to be the recipient of a special needs Mountain Buggy.  The Ranger :)  Cameron is three years old, and he has Cerebral Palsy.  I have owned Mountain Buggy prams for 4 years(just a beginner really!) - starting with our black Urban Elite in 2007, and then our lime/black Swift in 2009.  We have been alternating between Cameron's wheelchair and his Swift for a while, but it is getting to the point where he is too big for the Swift.  His wheelchair offers no protection for sun or wind and to me it is essential that he gets those options when needed.

Due to the generosity of Mountain Buggy, yesterday on our doorstep we took ownership of their large buggy, Ranger, designed for larger children than what a normal baby buggy would take.  I cannot even begin to describe just what this means to me, and my family.  We are humbled and overwhelmed and as a result we are going to donate back our Swift so it can be given to someone in need.  I am going to really miss my little Swift, but time comes when I have to face up to the facts, that it simply won't fit us for much longer.  They are made to last well beyond 3 years, but Cameron requires head support, he can't sit up and he is too tall to be lying back much more. 

We took Ranger out for it's first test run today.  It is great to push, it actually made me want to keep going, to get out and go for big walks!  However I am not feeling 100% about it, and as I type I can feel myself getting into a bit of a funk about how to solve the problem of Camerons head control in the buggy.  It does not recline, and the angle of the buggy is more upright than what he is used to in a buggy.  Awake he mostly did pretty good but sleep was a royal pain in the bum and he couldn't maintain an upright head at all.  Even had one lady comment on "that poor boys head" loudly as she walked past(seriously, what gives people the right, anyway!!).  I've got his carseat insert in the buggy for his hips and bum and the head wedge I have in there is from an older buggy he used to have from a medical comany, but asleep it does nothing.  The need I have to have everything perfect is doing nothing at keeping me calm here, as I get frustrated that I can't immediately fix this, and even if I did have an idea I don't sew.  I will keep thinking, I will keep rolling up towels until I can have him fall asleep and maintain good head control - ie BACK and not flopping forward on to his lap!  Only bummer about that is I need to keep taking him out on long walks for him to fall asleep and test my creations. 

Never mind(for now).  I hope to have many adventures with my son and his Ranger, I hope to at least do something exciting with it once in a while so that I can report back and not have you bored to tears.  I am really hoping that I can take it to the beach this coming weekend!  Something the wheelchair would never do.  Today Ranger had it's first trip to the shops and my favourite cafe and I must admit it was pretty cool checking out it's reflection in the shop windows!