one day left to live series - 18 months and 27 days

All is well!

So finally a week ago we had ECI come in for the first round of talks and evaluations.
It was really nice to meet and talk to them in person.
We are hoping that therapies will start as soon as possible. To top it, I hope the evaluations are completed in the next week or so and I should get copies too.
As I’ll require copies of the evaluation to start private sessions.

In the meantime we had been to the Dallas zoo; it was a nice place we went there before the crowd could come in so we enjoyed a nice long quite walk. Well I guess even Sripathi liked it.

Then two weeks ago we had been to Houston Nanmadwaar.
It was a blessing to sing and dance forgetting all the troubles.

And I'm enjoying these routine less days with Sripathi or Srimathi ???
Here he is dressed up in a nice pink frock like a girl.

one day left to live series - 7 months and 13 days

So Miss.Susan came home to evaluate Sripathi's vision. It was a long but fun session. I'm so grateful she could come. We waited for over 2 months to get visual therapy for Sripathi. Well from what i saw and what she explained, it was to find out in what areas Sripathi's vision needs attention.

Basically children with Cortical Visual Impairment or CVI have trouble interpreting what they see. though not necessarily an eye sight issue its caused mainly due to the brain abnormality.
They'll require several types of stimulation and practice or rather therapy to help improve their vision.

Sripathi had trouble looking at objects shown to him, he would not see any toy just shown on his face. But then he responds well to anything that has sound and light. So there is hope, yes he will be able to see the light at the end of the tunnel someday!

Apart from all this going well, Sripathi is constipated. Could be the iron supplement that's working its best. Anyways I'll need to increase his water intake which is the most recommended for constipation.

Miss.Susan will be back next Tuesday for further assessment.
There are several things lined up for next week, my appointment with the gynecologist, Sripathi's appointment with the Hematologist and we'll be flying to Houston for his appointment with the Neurologist.

one day left to live series - 6 months and 13 days

Miss. Peg taught us few more exercises today. She also informed us that based on her evaluation from the last visit, it seems Sripathi behaves like a 2 month old baby. So our goals are now to ensure that he learns to control his head and trunk. We need to make sure Sripathi gets these exercises done at several intervals in a day. As his head is large and heavy most of these physical therapies are going to be difficult and painful for him. But we have start somewhere to help him stay independent someday. Me and Sripathi need an awful lot of strength and determination to perform these exercises.

Tomorrow is yet another therapy day. The visual therapist will be visiting Sripathi and evaluating him. BTW last night Sripathi had a tough time getting back to sleep after he woke up at around 2:00 a.m. He got some nap probably 30-40 mins twice this afternoon. I know that's not enough at all. Babies his age are supposed to nap 2 to 4 hours in the day and sleep for 12 hours at night. And Sripathi probably manages to get some 7 hours of sleep during the night and just 40 minutes of nap time during the day. This is the reason i'm trying to find about sleep therapy.

I was just looking up for some quote on sleep and see what i found
People who say they sleep like a baby usually don't have one. ~Leo J. Burke

Good night