day of surgery

9:30 AM got an update from OR that Srikar's surgery started.
12:15 PM Srikar is out of OR and in PICU. Dr. Sacco told us that they disconnected the connection between the hemispheres. We might go inside in 10~15 mins to see him


Srikar is moving little bit. He is waking up, crying and going back to sleep. His breathing tube was removed right after surgery and he is doing well without that.

Srikar woke up 30 mins ago and had 16 seizures. He is bothered by them and started crying whenever he is having one. He got Motrin few minutes ago and went back to sleep. He is crying in his sleep whenever he has a seizure. My heart aches to see him in such a pain.

redo surgery

Srikar is scheduled for redo surgery on 9 Mar 10 i.e tomorrow at Medical city, Dallas by Dr. Sacco and Dr. Price. Getting the surgery done at Hopkins this time is going to financial burden to us as Dr. Carson does not take our new insurance. So we decided to get it done at Dallas this time.

The neurologist at Hopkins, Dr. Vining has some concerns regarding his EEG. His EEG shows right side spikes whereas his clinical seizures always shows his right hand and right leg moving. After discussing with the other neurologists at Hopkins and talking to Dr. So (Srikar's neurologist in Dallas), she too agreed that removing the remaining left side tissue and disconnecting hemispheres might benefit Srikar.

We are concerned about his surgery and recovery as he had a long surgery and recovery last time. Please keep Srikar in your prayers for a smooth surgery and recovery.

wonderful holidays

Srikar had wonderful holidays with family. Srikar's uncles and aunts came to Dallas for holidays. We had fun with family and went to local attractions.
Srikar started rolling over both sides easily. He doesn't want to sit in our laps anymore and prefers to be down on his tummy. He got a stander couple of days ago. He also got a stroller and bathchair.
We tried the stander today for few minutes. After we put him in the stander, he started looking all around the room. He is making open mouth sounds and is working on close mouth sounds.
We haven't heard from Hopkins regarding his surgery date. hopefully we will hear something next week.

back from our trip

Srikar had a good trip to CA. He was excited to see his grandparents especially grandma who flew to CA few days before him. Unfortunately he caught cold and cough the next day, but that did not prevent him from enjoying himself. He was pampered a lot by his uncle & aunt. He was fussy intially when we got in the plane. He did not want to sit in our laps. Once the engine started, he was eagerly listening to the sound and the announcements, and slept after sometime.

I met Shawna who had a left hemi redo after 30 yrs of her first surgery at U.C.Davis . Dad and Srikar couldn't make it as they were sick.


Our neurologist called us this week to discuss about srikar's surgery. He recommended us going ahead with a redo to remove the remaining tissue and also disconnect the hemispheres. We haven't heard back from Hopkins yet.

trying to crawl

It has been a long time since I updated about Srikar. No major milestones, but he is improving a lot. His is trying to crawl on his tummy. His head control improved a lot. He is babbling and shouting for hours and wants somebody to play with him all the time when he is awake. Though he doesn't like the ramp, he gets down the ramp and tries to move some distance.He is working on his sitting posture.
He thinks grandma is to pamper him and feed him, but not for therapy. He doesn't let grandma do therapy, and whenever he is hungry and sees grandma he starts to cry for food, eventhough me and dad are sitting right there, he doesn't bother to ask us.

We called Hopkins couple of weeks ago to discuss about his seizures. They asked us to send them latest MRI and EEG which he had this week. We tried four medications with no success in controlling his seizures. MRI clearly showed a connection between left and right hemisphere, and the neurologist thinks the seizures are originating from his left hemisphere in the deep midsection.

We will be flying to California during Thanksgiving week to his uncle's place. We always notice that when we are outdoors for couple of hours and after coming home, Srikar behaves as if he missed home and is excited and happy to be home. This will be an intersting trip to see how Srikar takes it.

rolling over

Srikar rolled over for the first time today after the surgery. He used to rollover once in while before the surgery.He was trying to roll over for the last three days. Today morning I put him on his back. He turned to his side and was trying to roll over. He is trying his best to do so. Finally after 8~10 tries he rolled over and was smiling at me. He rolled over couple of times today by himself.

Our little guy still has cough and runny nose. He got a break from his therapy this week.

fever

Srikar is having fever from Thursday afternoon. Yesterday we took him to pediatrician, for blood test just to make sure his fever is not due to infection. Blood test came out normal. He was only taking milk for the last two days. He looks very tired and dehydrated. He is feeling little better today.He had little bit of solids for lunch. He is having more seizures than usual due to his fever.
We went to a Plastic surgeon at Children's Medical for Srikar's nevus and extra tissue on his left cheek and neck last week. The doctor told there isn't any laser which works for his nevus and because of the possible shunt infection they cannot do anything about the extra tissue. I was disappointed with the doctor's response. I was hoping laser could remove his nevus.
We will start Developmental services with ECI from next monday. It is going to be 3 sessions/month and increase it to 4 sessions/month.
He is babbling a lot nowadays, and is also getting used to ramp. He loves to play peek-a-boo.