Just updating you that we still need to get bella a van that can carry a wheelchair due to seizures she has now she can be in the wheelchair longer and longer before able to get ability to move again.
This year is full of more tests, appointments and smashing goals out of the park as well :)
After the last appt it has been decided that we need a pead neurologist to be involved. This was suggested 18 months ago but peads tga didn't do it so now they are being told by orthopedics they need to do it.
This year has been the hardest yet for BB but she has done well. Back at orthopedics today
We have been given a rare opportunity of possibly being able to get the van we require for Bb for $11k instead of the usual $30-40k
Any help through givealittle or any other fundraising ideas you have please let us know.
Sharing also helps amazing :)
With her hands locking up her fingers are starting to cross each other and there is a wave in the hand that should be straight.
Her hands are proving painful daily at the moment but good news is she did her exams.
Yesterday was a full on day, Bb has a very weak right side all the way down her body. Struggling to move but still can laugh and listen to music...and hug a teddy. Back to orthopedics soon, having physio, one long day at a time
Bella unfortunately has been in hospital with a big set back
She had a seizure, collapsed and when woke could only move her head and the pain was massive.
She has been in hospital since and is having to learn to walk again. Just going to the toilet or doing four steps twice with two ppl helping wears her out.
Her recovery to get to where she was...no idea how long. Join us on our fb page for more updates which we do in-between falling asleep in chairs. Please help us help bella.
Both hands are fully locked and pain is really high
A referral was asked for ent (ears nose and throat) and unfortunately three weeks later found out they still haven't written it
Unless you get private medical help you don't seem to get far in nz for some
Bella can have a little bit of independence even on her bad days
Struggling to walk without any support today, could not even sit up in bed without help. Most people would just give up with waking up and unable to bend to sit up without help but now our BB. I suggested a day off and cuddles on the couch but after hugs with one of the cats (which is why they are so important with us finding a house to accept cats) Bella was ready and waiting for her school taxi.
Bella hurt her back last week with swimming and although we have good days we have had a rough few weeks
Days up to 19hrs asleep, pain out of control, heart rate over 180, and more. She had a specialist appt today - three were supposed to be there one turned up. Because of that they have rescheduled for another date meaning today's was really a waste of time. They told me to make an appt at one of two places for her hearing (instead of doing a referral in the hospital as the list is too long) but the problem is they won't accept the booking for under 18yr olds!
So hard to get medical help
Bella is needing the van that will help her on her bad days with her wheelchair. Please share this page with your family and friends
We thank everyone for helping
Update on Bella this morning.
Did you know she suffers from her condition in all limbs ?
The poor girl is exhausted from pain and yet still got ready for school. I can't wait to see what type of leader she is going to be with her determination!
Her legs aren't working, both hands still fully locked.
Now this is where we run into a new issue.
She got the power wheel chair to help her on her really bad days. Great when it is just her legs however when it is both hands too it's too painful to use even the joystick.
So she's back in her manual wheelchair today having to be pushed around hopefully by teacher aids that don't forget where they have put her this time lol!
Tonight ended with a mad rush against the clock when Bella came to me and said mum my hands are about to lock. Thinking drat I need to get those nails she has on her off real fast I went to work.
Less than ten mins later both hands complely locked. Legs locked only moments afterwards.
She's now tucked in bed freezing as she always is when she locks up so extra blankets gone on her.
Bella shared with me yesterday that some teachers ask her why is she even at school. Clearly in pain, tired (falls asleep in class occasionally), and struggles to move.
Her response gave me a smile as it means she listens to me but also shows her grit.
She responds with "Because I deserve an education "
This little warrior is inspirational.
She heard the words I would whisper to her in her tears and screaming and has applied them.
Today we started the day with no balance and limited use with her right arm.
Tonight she has adapted through pain and making cinnamon scrolls
Major news for Bella and yet something we all take for granted... She was able to do her own buttons today with getting dressed.
Due to a handy new gadget she has been able to get with funding from you awesome people, Bella was able to take another step towards independence and also having a bit more privacy with getting ready every morning.
Obviously it won't work if her hands are locked but now for the first time in 13 years she is thinking about being able to wear her first pair of jeans.
Isn't it amazing what we take for granted others crave to have it for the first time.
So keep the help coming, join the Facebook page, share this givealittle on your social media as together we are helping make a difference.
Thankyou
BB has had a bad month. I think we are only up to about 8 days in the month of May where she has been able to walk normally. Winter doesn't even start for a few more days. Just pray things change
For the fifth time the powered wheel hair we are trying to get has been stuffed up. It's not in NZ after a month of waiting and the supplier has cancelled the order. Unfortunately all other wheelchairs she needs are more expensive and we are feeling at a loss To be able to help Bella. Please share the page and hopefully we will get there for her.
Bella's having a really bad year where she's experiencing multiple days of all four limbs locked. Now the first part being new wheelchairs to support her is done we have to look at a modified vehicle to help her be transported easier on her bad days.
Friday's update:
We are still in the wheelchair. (Day four) And also has two locked hands so not one limb is working right now.
The sesta (van taxi provided by Ministry of education) is pushing for her to be able to go in a new van where it has a chair lift instead of how we do it at the moment by needing multiple ppl to get her out of her chair, lift her into a van then put the chair in the back of the van folded up.
When she is like this she can have bladder accidents where as the message doesn't go to her brain and then a surprise puddle can be around her. With being at college we keep trying new ideas on limiting the embarrassment of this for her.
But on the good news is that she is still determined to get an education and she is doing very well in maths at college.
Bella has an awesome sense of humour. So it's not her that is short....it's the trees that are tiny!
After a period of not being able to walk Bella was standing on her own again and with it being the school holidays decided to explore the redwoods in Rotorua and do bunny gold for the first time.
Although very sore at the end and the next day Bella was able to just be a kid and have fun.
When the phone rings early in the morning from the specialist saying he forgot to address a problem with Bella in clinic ... Nearly four weeks ago.
Her blood pressure is far too high and has been steadily getting worse over the past two years.
He just forgot to tell us that it is at the point of something needing to be done asap.
She has a scam for kidneys coming shortly along with tests to be done at the lab ASAP.
It's hard to trust the drs when they just forget....even more so when it is not the first time.
Will keep you posted.
Hi everyone - just letting you know that a facebook page of her journey has been set up after alot of asking for one :) Feel free to join, share, and invite friends and family to it.
https://www.facebook.com/bellasjourneynz
Take care
Had a phone call today saying that college is struggling with her health needs at school. She is taking alot more time and attention than other children her age due to her condition and funding from the government is just not covering it.
It was a hard call to take as we want her main stream as firm believers that even with hurdles, Bella can continue to live as normal as possible life.
The saying I have always given her and she has brought into her life and uses to get through and pass onto others now is...
It doesn't matter how bad it gets. It's only your attitude that will hold you back.
The school is trying to make changes to help her, but they have no idea if it will be enough or not yet to help her.
Fingers crossed, prayers appreciated
Yesterday she finally turned 13. She had a fun day with her friends and family and got lots of teddy bears and plushies (her favourite thing!)
Unfortunately though she's ended up in her wheelchair again today. But she had so much fun over the weekend anyway...and won a game of mini putt for getting a whole in one!
Hi everyone, Bella hasn't had the best of week's this week with needing to be in a wheelchair and pushed around most days. Her pain level has been high.
What also does this mean when she's in a wheelchair? Help with the basics like pushing her around, help out of the shower and bathroom, help dressing, help getting just up the driveway and then up the stairs to get inside.
All this normal people take for granted but with Bella is just isn't possible.
The next funding project we have planned is for a ramp for her to get inside easier and then a modified car or a modification to ours so it can handle her wheelchairs and lifestyle more.
But hey even with the bad days she can still smile for a bit :)
Hi everyone, we just want to say a massive thanks to all the people who have donated so far. Bella is close to being able to get the first of the two new wheelchairs that she requires. Please keep sharing the link to friends and family and very soon we will have a Facebook page open about her journey so you can follow the good the bad the happy and the sad. But hopefully the biggest message you will get from it is that it doesn't matter what life throws at you, what matters is your attitude.
The photo attached is of her intermediate graduation where she had a daddy/daughter dance.
But in speaking about attitude she could have been all poor me as struggles with her limbs and to tell the truth we do get that occasionally and that's ok. But the thing is she rises back up and became the Junior student house rep this year (first year) of college. What she put down of what she wanted to show people? That no matter how hard you have it, put your mind to it and if you work hard enough you can become anything you want to be.
Take care
Funding has become so hard for those with disabilities as alot of it has gotten even tighter or cut altogether. Bella is supposed to have a teacher aid that pushes her at school and she has been told they don't get enough funding for that now.
Not just Bella but all people in this world deserve to be treated with respect and dignity.
Also at school water was turned off for construction and she needed to use the bathroom. It took approx 30 mins for her and the teacher aid to find a bathroom for disabled in the school that was working. And the only one was in the staffroom. Where is the dignity in that?
Last week Bella had full attendance at school even though for three days she was in a wheelchair. Two of those days she had both hands also completely locked. I have uploaded some photos on a wax bath treatment she can have at home now thanks to an awesome couple that provided it. A few days beforehand she was getting out of the school taxi and her leg gave way and she fell out of it at school. This year is already shaping to be painful and full of locks but she will get there. Our Bella has so much determination and spirit it's amazing.
