one day left to live series - 10 months and 22 days

We are back and Sripathi is doing fine but not his dad. Aravind developed a fever the day we landed in Orlando. He is now on antibiotics and is recovering fast.

On the day we landed in Houston we visited a prayer hall. People were singing, playing the cymbals and drums sort of instruments. It must have been a little too loud for Sripathi because he immediately had a seizure but a short one.

On the 15th he had to fast nearly 4 hours to be sedated and taken for a Spinal tap or lumbar puncture. Later during the day he had to give blood tests. As usual the nurses were fighting hard and finally drew blood for 2 tests and after nearly an hour of struggle they called the doctor to check if the third test was necessary because they just could not find a vein to draw blood. After sometime the doctor returned the call stating that they would not require the third test.

After a long Wednesday he had a break on 16th and met his ophthalmologist on Friday afternoon. She was impressed with his improvements and told us to return after 6 months and mentioned that she might consider glasses for Sripathi if he is still far sighted. And as far as playing one eyed jack she said we need not worry about it but make sure he does not press or pry into his eyes.

Later we went to visit his neurologist who was also impressed with the way Sripathi was trying to roll and lift his head. He said all the tests so far the spinal tap and the 2 blood tests came back negative. He also said that it is happy to know that the tests are turning negative but at the same time we have to understand that we are not finding any answers.
He then explained how to wean him off the phenobarbital in 9 weeks as Keppra alone would be sufficient for now and if necessary he would go up on the Keppra.

Dr.W told us that seizures triggered by some kind of physical discomfort like constipation, congestion or like the other day which was caused by loud noise is not as critical as compared to seizures that are provoked without any reason. And such seizures would not cause much harm, but as much as possible we need to recognize Sripathi's discomforts and avoid such situations of lowering his seizure threshold.

He checked Sripathi physically and when he measured his head circumference he drew the graph and compared it with our last record which was 3 months back and said there is a 3 centimeter increase. He was quiet concerned at Sripathi's large head. He said it has to stop growing at this rate.

Our other concerns were with his motivation to use his hands. Apart from touching his toes and playing one eyed jack he doesn't seem to use them. Dr.W attributed this to his hypotonia and affirmed that this too would improve with time and therapy if not completely cured.
I had found about Anat Baniel method of movement therapy for special needs children like Sripathi. So I mentioned about this therapy to the doctor, he said it should be fine to engage him with this kind of therapy. Dr.W also asked us to return after 6 months if everything goes well. So I'll now try to fix up an appointment with the therapist in Gainesville. Hoping that we can drive Sripathi to the therapist on one of these Friday's.

Overall the feedbacks from both the doctors were good. So much for not having any hopes because I had absolutely nothing in my mind and was not anticipating anything.

one day left to live series - 10 months and 13 day

Thank you for all the kind comments on Sripathi's biggest milestone.
(Happy Ganesh Chaturti celebrations with virtual kozhukkatai.
And belated Janmastami wishes with virtual chedai.)

We are heading to Houston this Tuesday for his scheduled visit with the neurologist, neuro ophthalmologist and day long genetic tests at Texas Childrens hospital.

In the meantime his vision has greatly improved after Ms.Susan's arrival as his vision therapist. His occupational therapy is progressing moderately as he cooperates for at least 20 minutes with Ms.Julie but sadly even after 4 months of physical therapy he gets dislikes the PT sessions totally. Sripathi does several of the exercises during the day in bits but somehow does not want to do certain moves. If we continue performing tummy time on a boppy with his elbows tucked he would start wailing non-stop and simply exhaust himself crying and eventually fall asleep.

Guess its for his own fun Sripathi is playing this one-eyed jack for a couple of weeks now!