Monthly Archives: May 2013

Day 9 The spirit is willing but the body is…..well….tired!!

Today was another tough day.

Some of my muscles are tired

Some of my muscles are tired

 

 

It was a bit hard to get into the groove this morning but Mikayla came good with the help of some pre-planned “motivational” incentives to help her get through the tougher times…..

 

 

 

 

 

 

 

 

 

Although I am physically tired, I can still get lovely and straight
Although I am physically tired, I can still get lovely and straight

Once she got into the swing of it and found her focus, she did well, and even though she was physically tired, she still managed to find the body positions she was looking for in various activities.

 

 

 

 

 

 

 

 

 

 

 

 

There is no doubt that today is tough
There is no doubt that today is tough

 

 

But there was no doubt it was tough at times and that she fatigued more quickly.   The program was modified a bit today to account for this and Mikayla, like the trooper that she is, still tried hard.

 

 

 

 

 

 

 

 

 

Check this out - I have strong straight arms,  I am doing therapy AND school work at the same time.....AND I am still SMILING

Check this out – I have strong straight arms, I am doing therapy AND school work at the same time…..AND I am still SMILING

What was impressive, and inspirational though, was that despite significant physical fatigue, Mikayla still showed evidence of positive outcomes in areas such alignment and strength which would have gone right out the window under these circumstances in the past.

 

AND PERHAPS EVEN MORE IMPORTANTLY………..

 

 

 

 

I still have my sense of humour and we can all have a good LAUGH!!!
I still have my sense of humour and we can all have a good LAUGH!!!

Mikayla’s warm and bubbly personality shone through, and despite a tough day, all the hard work and perseverance, her “funny side”  had us all in stitches, and we could all enjoy a good laugh too!  GOOD ON YOU MIKAYLA – YOU ARE AWESOME!!!

Travel Tally:  1621kms and 18hrs driving

Half way there – Day 8 Intensive Therapy

Well to day is Day 8 and the halfway mark for the program.
So far, I think this was the hardest one for Mikayla. We were told that the second week, or at least some days in the second week, could be difficult. Today the effort and affects of fatigue were evident as she continued to work and try hard at her exercises. A bit more encouragement was needed, but she pulled through and once again did a great job.

Day 8 IntensiveDay 8 intensive

Day 8 IntensiveDay 8 Intensive
Even with the impacts of fatigue, Mikayla is requiring reduced input from the therapists and is more intuitively finding her middle and showing stronger postural control. These are all important for improved balance. She is using less of her deviations to assist her, and paying more attention to where she places her body. This is important for improved motor planning and patterns.  It should also be remembered that at the same time as we are seeing some of these improvements, the demands of what she is being asked to do are higher.

Although it has been a more difficult day, Mikayla has managed to stay focused (mainly) and kept her good sense of humour(mainly).  The picture below is an example of how she is progressing, showing how she maintained strong straight arms and elbows when weightbaring on them, and at the same time kept her hands flat, and she did all this at once, without the prompting and support that she has needed to this point.

Strong straight arms no prompting Day 8 Intensive 

So today was really hard for her, but with support and encouragement from those around her and the therapists working with her, she got through the day and put in another fantastic effort.

And if that is enough, she has also completed some of her school tasks AND done home work too and all without complaint!!

Travel Talley at the half way mark is 1443.7km  and approx. 16hrs driving

Where is the road map???

One of the difficult things that I have found about Cerebral Palsy is that there really isn’t much of a road map! I can remember in the early years of Mikayla’s diagnosis, searching for answers, desperately looking for some idea about what we could aim for, what it would mean for Mikayla’s future, what would it “look like” down the track???? Sure there was some very general information on Cerebral Palsy out there, but what I discovered is that outcomes ARE extremely difficult to predict for an individual. I can remember asking our therapists questions that they really couldn’t answer in the early days and feeling totally dismayed that I couldn’t seem to get a good solid straight answer….but now, I have much more understanding of why this is, and a much better understanding of the number of factors that can potentially influence the outcomes for an individual with Cerebral Palsy.
As a parent it is very difficult to know where to aim if there aren’t any goal posts, and indeed even if there are some, yet they keep shifting. As we continued along the journey, there were a few “indicators” given here and there which helped a bit.
We are still at a point of unknowns today, and still learning all the time about Mikaylas CP and how it affects her.
And I guess, there are two sides to every coin, and perhaps the flip side is that without a road map, there can be some freedom to pave your own path…..

Fundraising for Mikayla’s needs

i-am-mikayla.jpgWe have linked in with a great charity called “The Developing Foundation” who supports families like ours to raise funds towards achieving their vision for kids with additional needs like Mikayla. Although the decision to help Mikayla in every way we can is easy, putting yourself out there enlisting help is not, and anyone who know us, would know that taking this step has not been an easy decision. We are hoping that the benefits for Mikayla however are BOUNDLESS, and that with the help of supporters, we can really help her achieve all that she is capable of, and keep her life as barrier free as possible.

The Developing Foundation gives our family the opportunity to raise funds to help us continue to provide Mikayla with opportunities to further develop her abilities, increase her independence, and find ways of participating in activities that she loves. The donations Mikayla receives will help us continue to work towards overcoming the challenges that cerebral palsy presents Mikayla every day, and give her every chance to “become all she can be and fully experience life”!

To help Mikayla achieve her goals and make a difference to her future, you can:

• Donate online by clicking the blue ‘DONATE NOW’ button under Mikayla’s photo at www.developingfoundation.org.au/family/mikayla and receive an automatic tax deductible receipt for donations $2 and over
• Share this information with your family, friends, colleagues, and anyone else you can think of to help us increase awareness of The Developing Foundation and our fundraising efforts to help Mikayla.
• Help us raise sponsorship for our team through participation at the Annual Brisbane Riverwalk event by collecting donations on our behalf using pre-printed receipts supplied by The Developing Foundation Inc.
• All donations of $2 or more are tax deductible. The Developing Foundation commits 90% of funds raised by or donated to our team, to these unmet needs. The remaining 10% is used by the charity to cover credit card charges, administration and support.
If you have a question for our team please email teammikayla@hotmail.com

Thank you for your support, it means a lot to us, and will help make a difference to Mikayla both now and to her future.
teammikayla_lores.jpg

YOU CAN BECOME ONE OF MIKAYLA’S ANGELS NOW BY MAKING A DONATION.

Go to www.developingfoundation.org.au/family/mikayla or contact us at teammikayla@hotmail.com for more information.

Mikayla and family

Mikayla’s Story

Life has been a challenge right from the start. I was born nearly 13 weeks early and weighed just 576grams (1lb4oz)! I was so small that my Dad’s wedding ring slipped easily onto my tiny arm like a bracelet! Due to my prematurity and very low birth weight, it was a very difficult time for my family and there were many things to overcome during the months I had to be in the hospital.

Today, I’m pretty much like other kids my age. I like to play, read, listen to music, do arts and crafts and enjoy the out of doors, and spend time with my friends. I really love animals, especially horses and dogs, and one day I would love to live on a farm and have lots of animals of my own!

Cerebral Palsy affects my balance, strength, and coordination. It makes many daily things difficult for me to do, and it means I need help with a lot of things…but it doesn’t stop me!

To help my muscles, bones, and joints, I need ongoing therapy, and lots of different equipment. As I grow and change, equipment often needs to be resized, modified or replaced, and I sure have grown a lot!
In May, I have the opportunity to do an intensive therapy course right here in Australia! Intensive treatment like this can help a lot, and is not readily available here. I will work on my movement patterns, stretching and strengthening, and improving my balance. It is very expensive to do, but it is a great opportunity.
As well as the Intensive therapy course, other things that Mikayla’s Team is raising funds for include my regular ongoing unfunded therapy and my equipment needs. This year this includes:-
• Gap funding for a bigger power wheelchair (I have outgrown my current one)
• New hi/lo supportive seating for use at home (I have outgrown my current one)
• A Kidwalk hands free standing and walking device (This will really help with my muscles and will allow me to do activities I love while helping my body)
• Regular Physiotherapy, Speech Therapy, and Occupational Therapy
• Therapeutic horse riding and other therapeutic interventions. (This is a great activity to activate and strengthen many of my muscles and riding horses is also really great fun!)
• A 24” modified tricycle (I have outgrown my current one)
• Home modifications for wheelchair access.
Each of these things will make an important difference to my life, and to my ability to do things I need to do, and those things I really enjoy.
With a lot of effort and determination, I continue to overcome many challenges. With your support and the continued love and help of those around me, I want to reach my potential, to be as independent as I can be, and to fully experience life!

Day 6 Intensive Therapy

Day 6

Despite the fatigue factor that was evident today, Mikayla persevered and continued to try very hard.
Although it was more challenging again today, she really did give her best and that is all anyone could ever ask or expect….

walking on knees day 6froggies with flat hands day 6twisting and looking for ball day 6

and she is STILL keen to come back tomorrow…..and even enquired about when the next course would be on so they could make sure she was on the list for it!

Mikayla’s program was a similar routine today and even though she seemed to be feelin’ it a bit more today, she did a great job, and there was evidence of positive affects in some areas.

Travel Talley: approx. 1080kms and 12hrs of driving

Week 1 Intensive Therapy

The therapists are always smiling and enthusiasticWell we made it through week 1 of the Intensive Therapy Program….and we are still smiling!

Firstly I want to say that the therapists are lovely and have shown an impressive level of knowledge, professionalism and commitment to what they are doing. Throughout the week, I was impressed with the way the therapists conducted themselves with the same level of energy, enthusiasm, and focus for each individual – whether it was the first child, on the first morning, the middle session  of “hump day”, or the last session of the week!

Here is a basic summary of the sorts of things this week entailed for Mikayla:
• Stretching muscles -abductors, hamstrings, hip flexors
• Dissociation Exercises – using right side and left separately
• Strengthening muscles – glutes, abductors, obliques
• Weight shifting – forwards/ backwards, side to side
• Alignment – finding and holding a neutral alignment
• Arm strength – weight-baring with straight elbows and flat hands
• Motor planning
• Stability
ALL of these things are challenging for Mikayla and take a lot of effort and concentration. She did a fantastic job focussing, listening, trying her best and persevering!

Stepping exercise
What sorts of differences did I notice during the week?

•There has been some improvement in Mikayla’s movement patterns during her exercises, with repetition. This would be expected because from experience we already know that Mikayla responds well to repetition, and needs to warm up to the task. There were definitely times I could see a better fluidity of movement in what she was doing. (there was a good example of that in the bench work she did and also in step work).
• There has been some improvement in strength. Most notably to me, in her right leg as a stabilizer when weight shifting, and in her arms. At one point today I couldn’t believe how long she was able to maintain weight bearing with her straight elbows without collapsing down onto her forearms for support.
• As the week progressed, the therapists were able to provide less support and prompting at times – things like lifting a leg to step up, squeezing her buns to stabilize and things like that.
• There are more things that I noticed as it was all happening – a moment when she held herself upright a bit longer, times were better pelvic stability were evident, times where she ‘looked good’ but the specifics of that are hard to explain. Some of the positive things I noticed were very subtle, but demonstrated a “difference” all the same.

Sometimes it can be really hard to relay this kind of information because there isn’t always something glaringly obvious or miraculous that is meaningful to those without specific experience/knowledge/and often history, with the individual (and I say that respectfully).

Taking a rest

 

During the week, there  were times that Mikayla was feeling tired and there were times that she was asked/encouraged to go a bit further – to push her limits….but just enough of a challenge, and nothing that seemed unreasonable for her.

 

 

Day 5 included trying some CME (Cuevas Medek Exercise)

CME trial - end of day 5

Today Mikayla had the opportunity to do an extra hour at the end of the day to try CME.  In this approach Mikayla was being exposed to the influence of gravity with the therapist providing “distal” support (I think this means providing support as far away as possible – or in other words providing the least amount of support that is possible).  It proved difficult to do with Mikayla mainly because of her size and weight which is right at the end of the scale for this kind of therapy because of what it entails.  Mikayla did a GREAT JOB, though, and there will be some further discussion about the best way to proceed regarding this into the coming week.

So overall,  there has definitely been a lot going on, and a lot to take in, for both Mikayla and Me!
I asked Mikayla what she thought of it all and she said “Good”.  So there you have it.

Heading home for some R&R

Heading home for some R&R

I think we are BOTH looking forward to some R&R this weekend. I will try and find it somewhere in between some of the other basics of day to day life and keeping a house and home as well – you all know the drill – laundry, cooking, cleaning, grocery shopping, bills, pets.  Then there is attending to schooling as there isn’t much time left by the time we get back home each day during the week.  There is all the usual parenting that goes with having two children (as wonderful as they both are), and of course attending to Mikayla’s daily assistance needs (minus “therapy” for a few days though) ……. and of course most importantly spending quality time as a family – with BOTH kids, and my husband.
Miss Mikayla has some school work to do, to help her keep up with her class, (although we did manage to creatively attend to some of it during the week here and there), but rest assured, she will definitely get time to play and chill out too!

TRAVEL TALLY FOR WEEK 1: 900kms 10hrs