Sripathi and several other special needs children have generously contributed their artworks for the Lighthouse Central Florida VIP Art Auction.Meanwhile tracking Sripathi’s Oral motor therapy, it has been going on just fine. I’ve been learning new exercises with regards to moving his jaws and cheek muscles. The therapist Ms.V suggested getting organic gummy bears (I found these sweet surf product online) She wrapped them in polyester organza fabric and makes him chew on it. Although he seems to work out at the therapists place and sort of fools me back at home. I got to learn to do it in a better way. Lately she has asked me to start phonics.
22nd February Sripathi restarted occupational therapy with Ms.S. She taught us about the brushing technique, something that Ms. Peg also told me and showed me how to do. Next was the joint compression. Compression was something that Ms. Peg has been doing with Sripathi since the beginning. But I guess joint compression would also help enhance his motor skills.
Finally we had to discuss about the ketogenic diet as per Dr.K’s suggestion. So on 23rd we went to Arnold Palmer to meet the clinical dietician to discuss Sripathi's conditions. Though I thought converting a pure vegetarian diet into ketogenic diet was going to be tough the dietician said its easier and that perhaps a vegan would be a big tougher. So anyways nothing is going to get started until we discuss it with Dr.W at TCH. At least we know there is yet another option to control Sripathi’s seizures. But of course it again is not a totally guaranteed method as it may or may not work for each individual. And if it does work for Sripathi we got to stay on the diet for I think 3 years.
That same evening Sripathi’s wheel chair arrived. It does not look as depressing as I imagined. Its looks more like a sophisticated stroller. Sripathi is all game for it. He loved to sit on it for lunch, snack and dinner. Oh yes I do feed him breakfast and that he has when he is hooked up on the standing frame. It a little uneasy to put him on the standing frame and watch him all hooked up and strapped all around. But well if it is going to help him we are both game for it! But until I get over my uneasiness completely and learn to appreciate the use of all these equipments I would not be able to share happy pictures :(
At the end of February and that too at the dawn of my 30th birthday Sripathi woke me up with a 10 sec seizure. It was mostly due to congestion. But sadly it seemed to reoccur at midday. Things seem to get out of hands when he seized again at 4:22 pm for a terrible 1 minute and 30 seconds. So we called the neurologists office in Houston and left a message for the nurse. And she promptly called me the next morning and suggested to add an extra dose of keppra at midday for a couple of days. And definitely it helped. He is doing fine. Touch wood!
The next day since Sripathi felt better, we took him to the temple for a quick darshan of Lord Siva on Shivarathri on the 2nd of March.
On 3rd Sripathi submitted his precious artwork for the VIP families’ auction organized by Lighthouse of Central Florida. Ms. Susan took a nice snap of Sripathi to post on the artists webpage. All the paintings are so beautiful. It is amazing how all the children created such soulful masterpieces. And the pictures of the artists are so darn cute.
A milestone in Sripathi’s medication! On the 4th of March he bid good-bye to Phenobarbital.
Since Sripathi spends a lot of time on the Standing frame he required sturdy shoes. We could find wide shoes that would fit over his braces only at stride rite. They were very expensive but Sripathi definitely needed a pair.
Coming to the cold and sad news. We are moving to Dallas, Texas. It is for my husband’s job. It is such sad to news to my therapist. I cannot imagine how much I’m going miss them. We would eventually find therapists at Dallas. But definitely Sripathi’s first therapists Ms.Peg and Ms.Susan have been like family to us. I wish I could take them with me to Dallas! Oh boy I already miss them, as we have like just 2 more weeks with them here in Orlando.
Sripathi and several other special needs children have generously contributed their artworks for the Lighthouse Central Florida VIP Art Auction.Śrīmad Bhāgavatam 5.11.16
na yāvad etan mana ātma-lińgaḿ
yac choka-mohāmaya-rāga-lobha-
vairānubandhaḿ mamatāḿ vidhatte
The soul's designation, the mind, is the cause of all tribulations in the material world. As long as this fact is unknown to the conditioned living entity, he has to accept the miserable condition of the material body and wander within this universe in different positions. Because the mind is affected by disease, lamentation, illusion, attachment, greed and enmity, it creates bondage and a false sense of intimacy within this material world.
