"All is Well"
So the 4 hour MRI on Sripathi's brain and Spine came back with no bad news. Of course his brain is still large and it was obvious that it was due to the enlarged white matter but in addition to that we learnt that the white matter is nearly double its size for this age. Also the doctor mentioned that he noticed polymicrogyria on Sripathi's frontal lobes they are the main reasons for this seizures ans delays. Sadly we can do nothing about it. They will just stay. Other than that we were surprised to know that there are 3 or 4 more children like Sripathi with all the similar diagnosis. Well since they are all around the same age we really don't know what is store for his future. Well I hope all these children have a smooth way all the way! Yeah there will be bumps we know that and we expect them but not bad enough to bog us down.
Well then came the Spine Doctor who said Sripathi's spine is just fine know and that he will check back on him in a year. Although there are several chances that Sripathi could develop scoliosis its still a long way ahead so we were not there is nothing to worry about as of now.
We came back and Sripathi was getting back to his therapy schedule and now my husband returns home on Monday and suggests that we go back to Houston on Thursday and stay there for Veteran's day. Well its not often that he gets a break and I don't want to be a spoil sport so we leave and plan to return on Sunday only that my husband fell ill and we returned only on Monday. And guess what the very next day me and Sripathi were down with cold and fever for the rest of the week.
Sripathi got a little serious this time with cluster of seizures controled by an increased dose of diastat and then wheezing. Well with Dr.B on our side we were able to get his back to normal in 10 days. He was given an antibiotic, a steroid and a medicine through the nebulizer.
BTW in between our trips, one day I took Sripathi for OT and half way through the session the therapist sort of asked me if I find any improvements with Sripathi since we started OT. And I was positive because he has shown a lot of improvement. A baby with a head circumference of 55 cm that is heavy are a rock is fighting all that to learn to hold is head up is THE most incredible thing in the world. Well that's what I think because the therapist was not happy with the progress. Basically she was not happy about Sripathi's visit with her. So as i was waiting for this conversation to end, she was almost direct in saying that we should probably look into a different home health service to provide OT for Sripathi. Well as the story goes that was the last time i saw her.
So we are not back to searching for another OT, I've asked ECI to provide us with an OT again. Hope this time they have a quicker turn around because the coordinator mentioned that they have new OT's joining their team.
Also she told me that they would give me an application for the Respite care. That we I could have a friend or caregiver for Sripathi for 20 Horus a month.
The best part is our friend is a professional OT from India since she is not licensed here in America she is not working as an OT here. Yet I could pay her with the respite time and money and have her provide OT for my son.
Keeping my fingers crossed!!!
Okay its Thanksgiving weekend and so I took the time to call my two most favorite people in Florida, Miss. Peg, Sripathi's first PT and Miss. Susan, Sripathi's first VT. Ah it was so nice to hear their voice and so nice to know they are doing just fine. Here's wishing to "Thank" everyone we've met in this thrilling journey during this Thanksgiving 2011.
Happy Thanksgiving!
