Update Marijuana Oil trial

The marijuana oil has significantly changed the frequency, intensity and presentation of the seizures. It’s hard to say if it is better when we now have significant breathing issues with each large seizure.

What is amazing is Abbeys increased awareness and ability to learn. I have seen her ability to communicate through voice and hands become clearer. I have seen her stability in walking improve. And at times I have seen her mental endurance be extended.

For us the seizures are hard to handle.
For Abbey she is engaged and demanding of our attention.

As long as her quality of life is greater than the effect of her seizures, we will continue.

Photo: my girl is a little down at the moment. We are watching to see if something eventuates or if it’s another change in seizure pattern.

Start a Conversation Today

Start a Conversation Today

I am asked consistently if what I post on this page can be shared. In short, YES IT CAN and YES YOU CAN.

My purpose in sharing our story on this page is not to keep family and friends updated (this is just an added benefit). It is not to beg for your sympathy. Its not to have you feel sorry for me, Abbey or our family.

The PURPOSE of Voice of a Carer is for the following reasons and before I post anything here it must meet these guidelines. I have made these up for my own personal security and that of my family.

– what I post is an honest reflection of my thoughts, feelings and actions. It requires me to be very vulnerable, but I can control how much I share.
– it does not put me, Abbey or my family in an awkward position. It is not embarrassing or diminishes the dignity of any of us.
– its to provide a voice for other carers. To maybe allow other carers know they are not alone. To let other carers know that this role really sucks sometimes and its ok to say that. But on this journey we grow, we share and we become amazing people.
– to raise the profile of kids with disabilities and with medical needs in general.
– and finally to raise the profile of kids with rare conditions like my girl, Abbey.

If sharing what we posts means I can touch someone, assist someone, share with someone in one moment, then I have achieved my goal.

Please share. Please start a conversation with your friends, family and strangers. Say hello and smile to every carer you see. And lastly cuddle your precious people today!

Love from Hummingbird House

One week after our trip to Hummingbird House, I can finally share why it has had such an impact on us. On arriving home, we were straight back into life including doctors, work and changing seizure patterns. Trying to mentally digest what we experienced at Hummingbird House has been challenging.

Today I feel like I can put some of the experience into words.

Imagine being told about place that is fully supportive of you and your families needs, and that your daughters medical requirements are considered normal. Imagine meeting the gorgeous nurses, Rosie and Andrea, in an initial meeting at your home, who were patient, caring and not at all worried about what we would be bringing to the Hummingbird House.

The kids and I had visited Hummingbird House before Christmas to see the reindeers and had a very short tour. I was overwhelmed then at the facilities and beauty of the place. Honestly I did not believe it could be as they were saying. As all special needs parents know there are more times advocating for than just purely being with our children.

We arrived and were greeted with a smile and queries how we were doing. We were over-exicited and overly cautious. If we let ourselves relax, sheesh, normally all hell breaks loose.

Hummingbird House is a place for children with conditions that are life limiting or require palliative care. Our darling girl fits both categories. Such places are usually depressing, sad and have that icky feeling. Hummingbird House is a home.

We started with a tour of the grounds and facilities. The boys could not contain their excitement … walking ahead, touching things and being a little rowdy. At the time it was quite annoying, but now I see they were so relaxed to enjoy themselves.

Abbey stays on the Care Floor (not the hospital wing). Its a beautiful space with a music therapy room, art tables and patient care rooms that look like hotel suites. Each guest (not patient) has their own bathroom suitable for hoisting and a wheelchair. What a relief that Abbey could be cared for, no matter what medical condition she may present, from floppy and uncooperative to fully engaged and walking with assistance.

We were blessed with being able to also stay on the premises in a suite below the Care Floor. I was expecting bunk beds and a communal bathroom. James and I nearly fell over when we were presented with a small apartment that had been designed for including the guest requiring disability assistance. If we wanted Abbey with us downstairs, we could. If one of us wanted to stay with Abbey upstairs, we could. If we wanted to let Abbey have her own camping trip while we spent time with the boys we could.

There is so much to share about our Hummingbird House experience, but here are the highlights:
– the food by Pauline. Home made dishes that delight the senses every lunch and dinner time.
– the boys loved the chickens.
– the playground for the boys.
– the joining staff for lunch and dinner with Abbey if we decided too.

Our family were not a strange entity at Hummingbird House. We were normal to the staff. That is where the emotional overwhelm started. To be accepted with no need of explanations.

However James and I are processing that the staff were surprised at our Abbey, in particular there is no seizure rescue medications, her intensity of seizure and her amazing abilities, but how these abilities can alternate significantly on an hourly basis.

We had the privilege of chatting to the nurses in charge of Abbey’s care and they shared or confirmed our thoughts. The thoughts that we are in a pretty crap situation. Yes, I have always know it … but to be put in a placed where we are considered normal and to be totally cared for … to then come back to reality, it hit me hard.

Hummingbird House also provides me a place to call on for assistance when it does become too hard. And its becoming harder as the weeks progress. After 12 years of very minimal assistance, now there is more. Wonderful.

Where to now?

Back to Hummingbird House as fast as we can!

Sometimes you need to let the puzzle fall apart to realign the pieces.

Sometimes you need to let the puzzle fall apart to realign the pieces.

It has been a sad week, to be honest. Mentally coming down and processing our trip to Hummingbird House plus changing patterns to the seizures for Abbey, yet again. It’s been a very long week, with some other personal concerns.

Reinforcements finally arrived home yesterday to take some of the load. This morning my brain crashed as I had my safety net back. The need to hold it altogether for the family, finally failed.

Letting it all fall apart was the best move today. Lots of tears and some undignified sobbing meant all the emotion is released. Now I can move towards my best again.

Marijuana Ool Update

Abigail heard us all in the kitchen and vocalised she was not happy about that. With assistance she walked with me to the kitchen and stood at the bench chatting away.

The CBD oil has improved Abbey’s alertness and willingness to engage in the world around her. She is retaining abilities and improving upon them. It is wonderful to see my girl an engaged member of the family, once again.

The CBD oil has completely changed the presentation of the seizure. We have gone from status epilepsy for up to 3 days, to highly physical, vocal and difficulty breathing up to 5 times a day plus other seizure types. The seizures are much shorter, but still as life threatening.

Life has changed for Abbey, for my caring role and for the family. It’s a new normal that we are still working through. The highlight of each day is my daughter responding when I chat to her, and my girl showing she wants to be with me.

When will the paperwork end?

In January to early February I filled in over 50 forms equating to about 150 pages of paperwork related to the needs of Abbey. Yes, I kept a tally for about 30 days, just to see why I get upset.

We all hate paperwork, but a lot of it is frivolous due to internal policies and procedures of government or businesses in the disability sector.

This doozy is a form we need to fill in to allow teachers to administer medication at school. Perfect and extremely important for regular medications. Things can change quickly though, and this is when it tests procedures.

Abigail had stopped taking this medication, ahead of schedule while at Hummingbird House. To ensure it would not be administered at school, this form had to be filled in again and signed, advising not to administer. All to be done before the dose due at 12pm. Lucky I was home or Abbey would have been medicated.

I understand the need to cover bums for legal issues. I did it with a smile on my face and laughing at the situation, but one snide remark that this is silly.

I wish it was easier. I wish that carers did not need to run around printing forms to sign for nothing to happen … to photo and email back to prevent a course of action that would disrupt our children, all before a deadline.

A note in a communication book and via a phone call should be enough. And maybe it’s not enough.

All organisations who interact with carers or parents should have procedures in place that minimise the unneeded stresses to carers due to frivolous paperwork.

Who will take up this challenge?
Who will put the child first and allow us to do our caring role?

I am passionate about this. Carers waste a lot of time, energy, money and emotions filling out frivolous paperwork.

Watch out for future days as I share what is frivolous.