Action planning to achieve your goals.

"If we don't change, we don't grow.
If we don't grow, we aren't really living."
— Gail Sheehy
Alhamdulillah, I am so grateful to Allah for His guidance. It it so much better when you have a clear vision of what you are trying to achieve before you take the action to reach to goals.

Mujhee on the liberty swing at Carson Street School.

Remember Mujhee wrote about her goals for this year. Here is a quick review of what action she trying to do to achieve her goals.

  • I want to be able to sleep at night between 9 pm to 7 am.
Mujhee is unable to go to sleep at a regular time every night. She needs to change positions up to 4 times each night. Sometime she is very distressed at night with temperature and seizure activities.There are some nights where she will not sleep at all because she was on midalzalom during the day to stop her prolong seizures and make her fall asleep straight away. When her sleeping pattern changes, it takes her couple of days or more to get back to the routine.

Alhamdulillah, she is down to one addministation of midalzolam in a week since her last anti-seizures medications review late last year. Prior to that review she  took up to 5 times of midalzolam during a week. Alhamdulillah her prolong seizures has decrease and I'm hoping for seizure free. Read about the review of her anti seizures medications here. The next review is on the 14th February 2014 in sha Allah.

She is seeing a Sleep Therapist from TCCP - The Center for Cerebral Palsy and decided some changing and trial of the Invacare Softform Premier Active 2 and the mattress overlay to regulate her body temperature when sleeping. Her sleeping has gotten so much better since the trial. Although she still has problems to get to sleep early at a regular time, I don't have to change her position as much as before. Before I would change her position at night up to 4 times but now it has go down to one. Alhamdulillah. Even though I don't mind doing it because it make you feel better once I get of of my bed and change her position then she will go back to sleep. Otherwise she would keep calling me until I come. In sha Allah we're definitely going to get the mattress and overlay for Mujhee. And please remember her in your prayer.

I also do ABR between 8 to 9 at night. I found that it keeps her muscles relaxed and encourages deep breathing to help sleep. I am so happy that she doesn't mind ABR machine on her through out the night. There are so much I would like to write about ABR but I just don't have time. In sha Allah, may be I will write after the ABR training this March.

  • I want to try the Ketogenic diet as a treatment for epilepsy. 
Last year Mujhee's seizures went skyrocket. She was so sick and stayed in bed most of her time. She missed a lot of appointments and her school too. Basically she had no quality time because of the uncontrollable seizures. Her medications was revise every 2 months last year. She's on Midalzolam, Tapomax, Clonazapam and Keppra. Towards the end of last year someone mention about Ketogenic diet, a treatment for epilepsy so I discuss with her Neurologist and he referred us to the Dietetics. She has the appointment with the PMH dietician on the 24th February to discuss the treatment, in sha Allah. I'm so excited for Mujhee about this. I hope her seizures will only get better.

Alhamdulillah,with the help from our Muslim community we managed to secure the training for this year. May Allah bless our community for coming together and help us. It is like a dream come true and I am looking forward to this coming training on the 15th - 19th March, 2014. May Allah give me the strength to make it happen.Now it's time to do the ABR video report for this coming training.

Mujhee will be attending her first Gemstones Youth Group on the 16th February 2014 in sha Allah. The group meeting every third Sunday of the month.

Our community is awesome. They are organizing the fundraising for Mujhee with a family bbq and soccer match and games for the kids on 23th February 2014 at the Thomas Moore Park, Wilson between 10 - 1 pm. Insha Allah Mujhee will be there to meet our wonderful community and I think it is a great way to understand disability and each other. There will be a representative from TCCP- The Center for Cerebral Palsy to answer questions about Cerebral Palsy and what can we do to support people with CP.

IEP meeting at Mujhee's school, Carson Street School, will include the discussion on her complex communication needs on the 19th February and a visit to ILC with Mujhee's speech therapist to see what options she has for her communication needs on the 27th February in sha Allah.

  • I want to upgrade my wheelchair.
We'll be looking at it sooner or when needs, insha Allah.

I'm still thinking about what option we can do as doing nothing is not an option. Insha Allah there is a way and we're going to find it out soon.  Any suggestion would be much appreciated. Please leave comments.

In sha Allah with the help from Allah, let's make the reality come true. Always remember it is not what I can do, but what Allah can do for me.


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