A story about my Angel-Cerebral Palsy due to Microcephaly with Symptomatic Epilepsy Secondary to Lissencephaly with GDD and Bronchial Asthma. Plus the journey of my other warriors, Dyslexic and Slow Learner. Life is so beautiful with such a great gift from Allah.
cita pasal Kakak Qaisarah plak k...si garang ibu ni dok syok melukis dgn ayah skang...amboi2, memang anak ayah btoi la kakak ni...bakat tu ada dah dlm darah...maklum la ayah pandai melukis kan...hehehe...so ni la aktiviti 2 branak ni skang...
tengok la model - e-mef
Ada gaya x
bangga bila ayah lekatkan hasil lukisannya di wall
Hari ni 1st time buat hydrotheraphy utk angel Qalesya...thanx a lot to Mak Lang, Papa & Mama yg memberi hadiah pool kepada Adik!! Dan juga kepada Super Dad sebab sanggup kuar hujan2, mlm lak tu p beli pool sebab ibu dah nak merajuk hehehe...
Memang Adik suka sangat bila ibu letak dlm pool...terkodek2 ja kaki dia. Ibu risau jugak kot2 adik x mau, mana tau kot2 adik rasa gayat ka, sebab Adik mudah terkejut. Tapi rupanya Adik enjoy & melayan perasaan sorg2 hehehhe. Kakak kata, "ibu, adik benang.." hahahaha...nak kata berenang la tu...
Terapi ni bagus utk pergerakan otot Adik. Ya la, bila kita swimming, kita akan gunakan keseluruhan otot pada badan kita. Secara x langsung, akan merangsang lagi pergerakan adik. Atok cakap, Rasulullah saw pun menggalakkan kita ajar anak utk swimming...(boleh refer post ibu yg terdahulu-Hydrotheraphy, utk maklumat mengenai terapi ni)
my new pool
comei x saya??
kakak dok bagi semanagt (ka tunggu nak lompat masuk ja??)
What is exercise and why is it so important for my child?
As a part of normal development, a child is continually moving his arms and legs, exercising as he learns to roll, crawl, move through sitting positions and walk. This spontaneous exercise is often limited in children with cerebral palsy. They may only be capable of a few movements, relatively inactive compared with other children, limiting their amount of spontaneous exercise. Exercise is very important for children with cerebral palsy. Exercise is defined as an activity that involves repeated body movements, with the aim to improve or maintain a level of physical fitness.In children with cerebral palsy, exercise is used to strengthen muscles, increase flexibility, improve
respiratory function, enhance a child’s gross motor function and to have fun
How can I encourage my child to exercise and have fun?
Swimming is a great way for you to encourage your child to exercise, have fun and learn confidence in the water. Exercise in water is very appealing to all children. It gives the child with cerebral palsy a freedom of movement that they may not otherwise have on land. If a child has significant movement limitations, participation in land- based exercise may be limited. The buoyancy of water reduces the effects of gravity, poor balance and poor postural control. It provides postural support, allowing children with cerebral palsy to exercise with more freedom in water than they can on
The buoyancy of water creates an environment that reduces the level of impact on the child’s joints,
providing a gentler environment for children with unstable joints to exercise and weight- bear
Why is swimming so beneficial for my child?
Swimming has numerous benefits for children with cerebral palsy. Being in the water encourages children to move their limbs and experience the effect of movement on their body. Warm water encourages stiff muscles to relax, and children move more easily in the water due to buoyancy.
Water play is a great opportunity for children to experience a variety of sensory feedback. Children
experience the feel of the warm water, the sounds and sights of splashing and the movement of their limbs. Perceptual and visuomotor skills improve because water slows down movement and gives the child time to react and appreciate how to use their body. Swimming and playing in water is such an integral part of play for many children, especially with Australia’s climate. Learning to swim will give your child the skills to participate in sport, play with his friends and family, and provide him with a means of keeping fit. Treatment and play are inseparable in the young child. Your child will become more confident due to achievements made in the water. As he develops the ability to move and enjoy the water, his self awareness and self- esteem will improve as well.
What is hydrotherapy and how will it help my child?
Hydrotherapy is a water- based physiotherapy program. Hydrotherapy programs are used by physiotherapists to:
• increase gross motor co- ordination
• maintain or increase range of movement and flexibility
• increase muscle strength
• improve balance and posture
• improve fitness and endurance
• promote breathing control
• promote water safety and awareness
• develop basic swimming skills
• reduce muscle spasm and encourage relaxation and enjoyment
• encourage normal movement patterns.
A variety of swim rings, arm ‘floaties’, pool noodles and toys are incorporated into the hydrotherapy session to promote independence and freedom of movement in the water. The children enjoy activities in the pool including acceptance of the water and buoyancy, bubble blowing and protection of the airway, kicking, splashing, floating, singing and playing. The children’s skills are progressed with the aim to complete competencies required for swimming lessons.
What is Halliwick?
The Halliwick Method is a specific swimming program used by physiotherapists. It is based on the scientific principles of body mechanics and the properties of water, aiming to teach people with special needs to become as safe and independent as possible in the water. The philosophy of the program is that the child is happy in the water and the emphasis is on the child’s ability, not disability.
Movement in water allows people with disabilities freedom from the constraints that they endure on dry land. No matter how severe the physical disability they can learn movement in the water. The program consists of 10 specific progressive stages that are achieved without the use of floatation devices.
Lissencephaly is a rare brain malformation that leaves part of the brain smooth when it should have folds or gyri. Lissencephaly (meaning smooth brain) occurs when there is a defective migration of neurons while the brain is forming. It generally takes place in the womb between the 12th and 24th week of gestation.
How is it diagnosed?
Lissencephaly (if severe enough) can actually be seen via ultrasound while the baby is still in the womb. If it is a milder case, the proper diagnostic tools include a MRI with or without contrast or a CT scan (Lola’s did not show up on a CT scan).
Are there different variations of the condition?
There are many different degrees of lissencephaly. The entire brain can be smooth making it a complete lissencephaly case or just specific areas of the brain can be affected making it isolated.
How is it treated?
There is no cure for lissencephaly because it is a malformation of the actual brain itself. Anti-seizure medication may be needed to help control seizures as this is often a symptom of lissencephaly. But constantly challenging the brain (via therapy) to help it to form new neuropathways is the greatest type of treatment you can offer to a child with lissencephaly.
What is the prognosis?
Each individual case is different which makes giving a prognosis difficult. It also depends on where the lissencephaly takes place. While others can see perfect, but they lack other skills such as memory, the ability to speak or other fine motor skills because the lissencephaly occurs in the frontal lobes.
. Physical, occupational, speech and behavioral therapy are all implemented to help a child reach their maximum potential. No two cases are alike therefore a specific prognosis is never attainable.
Links we found helpful: Lissencephaly Information Lissencephaly Loop Lissencephaly Launch Pad
Again, the information on lissencephaly is quite sad. You never imagine your kid will be the 1 in 85,470 to have this condition, but it can happen. So rather than wallowing in sorrow as you read the detrimental news online, follow the journey of the child who has been affected. My initial response was extreme sadness (in which it is normal to grieve), but now I am embracing this condition because Lola is still Lola. She will not be defined by West Syndrome or lissencephaly. She our daughter. She is an individual human being. She is writing her own definition of what these conditions are and how they affect her. She will not be that textbook case which is why we stay away from reading too much information on the internet.
Esei ibu terpilih sebagai 3 esei terbaik pada kursus hari ni....
Dianugerahkan seorang anak istimewa adalah pengalaman yg tiada nilainya. Nur Aida Qalesya, seindah namanya, puteri bongsuku yg disahkan penghidap Cerebral Palsy sewaktu berusia 5 bulan. Keadaan otak yg diluar kebiasaan menjadikan prkembangannya tidak senormal kanak² lain. Itulah kehidupan, kita perlu belajar menerima sesuatu diluar dugaan...
Menjaga anak istimewa terlalu banyak dugaannya. Memerlukan komitmen, tenaga, kesabaran dan kasih sayang yg amat tinggi. Emosi anak yg tiada kawalan dan sukar diramal. Rasanya sudah terbiaisa dengan jadual harian yg padat, tidur hanya 3,4 jam sehari. Jadual appointment yg penuh saban minggu - Fisio, Carakerja, ENT, Ofta, Peads. Semua ini bukan dilakukan seorang diri. Kerjasama bersama suami, meringankan beban dibahu ini.
Syukur kerana saya mempunyai seorg ketua jabatan yg amat memahami. Sentiasa memberi nasihat dan dorongan untuk menjadi lebih kuat. Beliau amat bertimbang rasa bila membenarkan saya bercuti separuh gaji selama 4 bulan walapun tugas saya amat diperlukan.
Saya tak pernah menyesal dengan takdir ini. Saya rasa amat bertuah terpilih menjaga bidadari syurga, amanah yg tiada nilainya. Allah tahu saya kuat kerana itu saya yg dipilih...
Rakan², kadangkala x semua yg kita mahu akan menjadi realiti. Kita perlu belajar menghadapi kenyataan walau sepahit mana pun ia. Setiap yg berlaku ada hikmahnya. Tuhan mencipta kepahitan dengan seribu sebabnya. Pasti ada kemanisan dihujungnya
Insyaallah, pengorbanan ibu akan berbaloi satu hari nanti..
Nur Aida Qalesya, engkau cukup istimewa buat ibu, ayah dan kakak...
*Kursus Soft Skill Hospital Pulau Pinang Siri 5/2011
28-29 September 2011
Hari ni 1st app dgn Dr Keng, pakar genetik..Adik such a gud gurl today...very responed to doc...cuma Kakak je yg dok kacau Ayah, sampai susah Dr Keng nak bgi explanation...next time Kakak tinggal dgn umi kat umah k!
Dr Keng cakap kemungkinan Ibu dan Ayah pembawa gen yg kurang normal...dan gen² tu bergabung sewaktu mengandungkan Adik..
Dr Keng ckp kena amik sample darah Adik bab nak buat ujian kromosom...nak hantar ke KL..nak cek kromosom no 17 samada normal @ x...pastu kalau ok, nak hantar sample ke Manchester plak bab nak make sure x da masalah dgn colour kromosom...(ibu pun x brapa nak paham term² medical ni)...
Klau kromosom Adik ok, nak kena cek gen Adik plak...Dr Keng plan nak buat CT Scan bab nk tgk samada otak Adik ada x kalsium yg bertompok...(ibu still x paham sequence dia dgn punca Adik...)
tapi kemungkinan sebab gen, so would be 25% risk for the next birth...Dr Keng ada ckp, klau mengandung lgi, doc akan scan baby utk tau samaada sihat @ x...tapi after 22 weeks of pregnancy baru bleh scan...which means, anak dah 5 bln baru kita nk wat keputusan samaada nk buang @ x...x sanggup rasanya nak dengar...x kan la kita sanggup nak buang darah daging kita sendri...
so sementara tunggu keptusan ujian kromosm & gen Adik (app Mei 2012), Ibu dan Ayah kena berjaga² la...tapi kalau dah Allah tentukan rezeki kita, Ibu terima dengan hati yg redha...