Saturday, September 27, 2014

Perseverance pays

Here is the beautiful Lily who has helped out twice a week for the past 6 weeks with Victoria's leg stretches. Lily has been such a blessing to Victoria and indeed our whole family. Not only is she proficient at stretching, she is fantastic at braiding hair! Alexandra is always the first one in line!

The physio confirmed last week that all the stretching has been worthwhile. Victoria's hamstring muscle is now well within an acceptable range. Her calf muscle is still on the threshold, however it hasn't gotten worse. So Victoria is still standing on the wedge daily for 20 minutes and wearing the night boot to give the calf a good sustained stretch while she sleeps.

The first week of hand motor training has been successful, with Victoria achieving her three goals in some way. There are still improvements to be had, but her focus and determination has been paying off. 

One of Victoria's goals was to tie her shoelaces. There was one small hitch to this goal, Victoria didn't have any shoes with laces! We were going to use an old pair of Charlotte's shoes. However, when we were at the hospital last week one of the nurses gave the girls some shoes, one pair, which fitted Victoria perfectly, had laces!! We are so grateful for the generosity people continue to show to our family, and for God's perfect timing.

The other benefit of this group training is that Victoria is meeting other children who face similar physical challenges to herself, giving a sense of 'normality' to her physical world, that she doesn't often get.  

This post I wanted to share some statistics relating to Camp Quality, an organisation that has helped our family enormously since we began this cancer journey. As we get wrapped up in our own world it can be easy to loose sight of the number of children and families that are also doing this journey. Here are some of the statistics relating to Australia.

3,137 families living with cancer, spread all over Australia, are part of the Camp Quality family.

7016 children living with cancer across Australia have access to Camp Quality programs

In the last 12 months Camp Quality teams across Australia have successfully delivered 73 family camps, 96 family fun days, 55 kids camps catering for children from the age of four to seventeen.

There are many ways you can support Camp Quality, if you want to know more, please click here.

On my last post I shared a link to some writing I have posted on the ABC Open site about low level depression. Part 2 of this writing has been now been posted, Moving out of the mire of low level depression. If you want to read it, please click here. Or if you know someone who might benefit from my thoughts and strategies, please pass the link on to them.

Thank you to everyone who continues to pray for Victoria. We know that God has His hand on her and that He is faithful.

Happy (blessed, fortunate, enviable) is he who has the God of [special revelation to] Jacob for his help, whose hope is in the Lord his God, Who made heaven and earth, the sea, and all that is in them, Who keeps truth and is faithful forever. Psalm 146:5-6 AMP

Tuesday, September 16, 2014

Therapy, therapy and therapy

It seems as though there is always something significant going on in Victoria's life. This last month has been no different. She has continued diligently each day to do the 40 minutes stretching of her left leg muscles. We will find out on Thursday what the next stage is in that therapy.

Monday afternoons have been filled with fun in the local hydrotherapy pool, again with the goal of stretching out the left leg muscles. This will continue for the next few weeks.

The riding adventures on Sprinkles have definitely been a highlight of the last few months. Victoria was invited to participate in the Riding for the Disabled Regional Mounted Games at Raymond Terrace. She competed very well, remembering all she has been taught regarding steering Sprinkles in the right direction, and giving commands for stopping and starting.

The stopping command with the reigns is tricky for Victoria. Having less strength in her left hand and arm, when she pulls on the reigns to stop, Sprinkles often veers to the right, as she naturally pulls harder on the right reign! Needless to say, the riding is very good therapy for strengthening her left arm.

All the training paid off, with Victoria winning 3 ribbons in the Led Rider events, 1st in Flagging, 2nd is Bending and 4th in Barrels. Of course I cried when she received these awards, so absolutely grateful to God that she has had this opportunity to be involved in this sport, and has been able to achieve so well. And so very grateful to all the volunteers at RDA who have made the training possible, and have shown such care and dedication to all the riders. They are another of the many blessings we have received despite the circumstances.

School holidays commence on Monday, but there will be little rest for Victoria, as she is participating in a research study entitled 'Functional splinting effectiveness in children with neurological conditions'!  The study aims to find effective treatment options to improve hand use in children with neurological conditions. 

As you can see from this photo, Victoria has limited movement in her left wrist. Yesterday, Victoria and the Occupational Therapist involved in the study came up with 3 goals for Victoria to achieve over the 2 weeks of daily 1 hour therapy sessions:
1. Tying shoelaces
2. Playing keys on piano with all fingers on left hand
3. Doing her own hair in a pony tail

These might all seem like simple tasks to use who have two fully functioning hands. But for Victoria with limited strength and functionality these tasks are very challenging. It is a blessing for Victoria to be a part of this study, and hence receive extra therapy to increase her independence.

During the therapy sessions, and practice sessions, Victoria will wear this splint to give her hand extra support. She has already given it a name, 'the spy glove'. Please pray that these therapy sessions will be effective and Victoria will be able to achieve the goals she herself. 

So as you can see we have been making the most of these treatment free months, helping Victoria to physically improve as much as possible. On the 3rd October it will be 12 months since the chemotherapy treatment stopped. I know I have said it before, but I will say it again, we are so grateful to God that Victoria is so well, and thriving in every way. 

This time off treatment has also given me the opportunity to reflect on all that has transpired over the past few years. There have been some very deep lows and some very big highs. At times the lows have been very very difficult to navigate through. In an effort to encourage and help other people who may find themselves in a similar situation, I have written about my own experiences of being a carer, suffering low level depression, and the strategies I used to get through. My story is posted as part of the latest ABC Open project, Speak you mind. If you are interested in reading about it, click on this link The Carer needs to be cared for
I had so much to write about, it has been split into 4 parts and will be posted weekly over the next 4 weeks. If you know someone who you think might benefit from this information, please share the link to this post.

Ultimately it has been my ever faithful God that has pulled me through, accompanied with the love, prayers and support of family and friends. Thank you to everyone who has helped me in some way get to where I am today, in a very good place!

Keep and protect me, O God, for in You I have found refuge, and in You do I put my trust and hide myself. I say to the Lord, You are my Lord; I have no good beside you or beyond You...The Lord is my chosen and assigned portion, my cup; You hold and maintain my lot. The lines have fallen for me in pleasant places; yes, I have a good heritage. I will bless the Lord, Who has given me counsel; yes, my heart instructs me in the night seasons. I have set the Lord continually before me; because He is at my right hand, I shall not be moved. Therefore my heart is glad and my glory [my inner self] rejoices; my body too shall rest and confidently dwell in safety, For You will not abandon me to Sheol (the place of the dead), neither will You suffer Your holy one [Holy One] to see corruption. You will show me the path of life; in Your presence is fullness of joy, at Your right hand there are pleasures forevermore. Psalm 16;1-2, 5-11 AMP

Please pray that Victoria will continue to be her namesake, victorious and a conqueror, in all areas of her life. And that Ken and I will be alert to any attacks that may come prior to the next scan on November 3rd. Thank you