Thursday, January 28, 2010

Wonderful Support

Since chubby kid's diagnosis last year, she has been registered as a partially sighted person.

Along with her registration, she has been receiving support provided to people with vision impairment. Earlier on, even before chubby kid was registered, a lady from an organization working with visually impaired children had been visiting her at her nursery once a week for an hour or so. Her responsibilities include teaching, guiding and facilitating chubby kid's learning and development. Her presence and guidance have helped chubby kid tremendously.

Furthermore, after her registration, another lady from another organization came to guide chubby kid in her mobility development. Her responsibility is to teach chubby kid how to move around safely. She has started chubby kid on a hoople (an equipment which looks like a tennis racquet without the net) to move around by feeling her surroundings using it. This is a prelude to using a roller cane (a cane with a roller at the bottom). Once chubby kid masters the technique to use the roller cane, she will then be given the white cane. Learning to use the cane at such a young age might sound strange to some people. The reason the lady pushes this skill set so early is only because I told her that we will be going back to Malaysia after my studies and that we do not have such a support back home. So, the lady will try to teach chubby kid as much as she can benefit from before we head back home.

The paediatrician whom chubby kid sees will eventually issue a statement/letter to ensure that chubby kid will get the appropriate support when she starts school. This will include a one-to-one teacher support (if I am not mistaken) reading materials in larger prints and other equipment that a visually impaired child might need.

The nursery that chubby kid attends has also been very supportive. The staffs treat her like any other children and include her in all the activities. Thus, she has been enjoying herself and benefiting from all the activities that encourage her to use all her senses and to become independent.

The more I write here, the more stressful I become when I think about what will become of her when we head back home and try to survive without all these support.


Saturday, January 23, 2010

She Will Thrive

I had written this blog entry for quite awhile but was quite reluctant to post it up. It is not that I am being in a state of denial, but rather, I am in a state of hopefulness. Hopeful that chubby kid's eye condition will somehow improve or that there is a cure for it. But alas, with the ophthalmologist's diagnosis, all my hopes were dashed.

It took quite awhile for me to compose this entry. With the emotional state that I was in, it was quite hard to think straight. Before the diagnosis, we were still in the dark of what was causing chubby kid’s nystagmus, long-sightedness and photophobia. It was as if there was nothing conclusive on her condition and of course, I was pretty hopeful that it would get better with time or that it was something curable. 

Last year, she had an appointment to do an electroretinography test, some sort of electrical test to detect abnormal function of the retina. The results of the test lead the ophthalmologist to make a diagnosis of chubby kid's condition. And so, she is diagnosed with cone dystrophy although the ophthalmologist cannot be certain whether it is just cone dystrophy or cone rod dystrophy.

The ophthalmologist took a while to explain the disorder in general. She is obviously going to have poor vision and photophobia for the rest of her life. But at this point of time, she is still too young to tell the extent of her disorder. I asked if she sees her world in black and white. The answer is no, she could see colours but the way she perceives colours is different from us. And then I asked if she will be able to differentiate colours. The answer is yes but it will not be an easy task for her.

He even did an eye scan and test on both my husband and I, which I think came back normal as he did not comment on it. He will carry out further tests on chubby kid in the next appointment but would not repeat the electroretinography test as she was much too upset with it.

Well, there is nothing that the ophthalmologist can do to treat her. The only thing to be done is to make the best out of things by giving her tinted glasses, baseball cap to shield the sun light (not that England has much of it) and in future, to notify schools so that she gets books in larger prints and teacher support. They do have a lot of support here for children with vision problems but I am not sure what sort of support chubby kid can get back in Kuching.

There seems to be a certain finality at this moment in time. A finality that came and took away my hopes. You see, chubby kid's eye disorder is a genetic disorder. So, there is not going to be anyway that she can be cured or for her condition to improve unless genes can be altered or unless God said so. Having a genetic disorder means that she either inherited it from us or she has a mutated gene that causes this disorder. This can only be confirmed with a genetic test, which we hope to undertake in the near future.

The possibility that she inherited the genes from us also means that there is always a risk that future children that we have will have the same disorder. Not that my husband wants to have any more children. He had already said even before chubby kid's birth that he did not want to have any more children after chubby kid. But because of chubby kid's condition, I was quite keen to have another child, so that chubby kid can have a companion and someone to take care of her. I had plans to persuade my husband to change his mind, so that there would be someone to take care of and guide chubby kid because she might have difficulty functioning outdoors. But this has changed with the diagnosis. I do not wish to risk bringing another child with vision problem to this world. It will be too much of a responsibility to bear. The first 20 months of chubby kid's life had been a huge challenge to us, physically, mentally and emotionally. When all the tears dry, the pain remains deeply etched in our hearts. The pain radiating from the thought that chubby kid will not be able to do a lot of things that other kids can do easily without much effort is extremely hard to bear. Thinking about her future and about all the things that she would miss out in life because of her disorder just heightens the extent of my woes.

Before the diagnosis, I still had a hope to hold on to. But now, I have nothing to hold on to. At times, I still get into a frustration that only mothers of visually impaired children can understand. I seek solace in prayers and find comfort in something that I recently read in an online forum from someone who has cone dystrophy. “Let your child use her inner spirit and she will thrive. Do not let your fears hold back your child, for she will go further than most sighted people.”

Friday, January 8, 2010

More Muffins

My husband's baking mode is in full drive. Bring it on, darling :-)

Tuesday, January 5, 2010

Monday, January 4, 2010

Chubby Tortoise

We bought chubby kid a new backpack, since she is always carrying our big ones around.

Since then, she has become a tortoise, carrying it around the house everyday.