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.

New Ramp

So this week had been a productive week. We noticed that Srikar is creeping a little when placed on his tummy. So we thought that if he is kept on some slope he will try to crawl. So last weekend we went to the Home Depot and built a ramp for Srikar. Father and Grandpa were the ones who built it and from a couple of days we are placing Srikar in the ramp.

On the first day Srikar was a little scared of the new development from flat surface to an inclined surface but yesterday and today he is doing much better. He isn't crawling yet but he is creeping little and little to reach the bottom end. And sometimes if he is angry he just lies there as if he is protesting... :) ...

Thank you Brande and Monika for your valuable information about the ramp. It was very helpful.

His therapy is also going great. He has been much more active in his OT, PT and ST. All his therapists are happy with his development. He has been holding his head straight much longer and he has been sitting in his Bumbo seat for a longer time.

Thanks to Srikar's Therapists Sarah (PT), Alyssa (OT) and Darrah (ST) for working so hard with Srikar and be a part of his progress.

starting new medication

Srikar is put on new medication to control his myoclonic jerks. He is having 20 ~25 of those everyday. Sometimes he is not bothered by those, but sometimes he takes few seconds to come out of those.
His incision on his stomach and head are healing well according to the Neurosurgeon who did shunt surgery.
Srikar also had appointment with Pediatric opthalmologist last week. His optic nerves are looking fine, but his eyes are little bit out of sync which is common in Hemi kids. Opthalmlogist might do a small procedure to correct his eyes in future. But for now we wait and see how he develops.

Nowadays he is enjoying his therapy and also finding ways to get away. He acts as if he is tired and wants to sleep As soon as I bring him out he is all smiling and shouting. He is using his left hand to explore other things and is moving his right hand up and down when he is happy and angry.

He is having great time with his grandparents and aunt.

A Pretty Tough Week

This week had been pretty tough for our little champ. Srikar slept all day on Tuesday (21st) and was not interested in taking food. Even though he woke up a couple of times he was not able to open his eyes and was fussing really bad. So we called his Neurologist and described the symptoms and he told us to go to ER and get a CT done.

We went to the ER and CT was done. Srikar was moved to PICU. On Wednesday LP was done to determine the pressure. LP indicated that Srikar was having hydrocephalus. On Wednesday also Srikar was sleeping all day till the LP. After LP he became more fussy. He started crying a lot. We were worried. We were told that he is having Hydrocephalus he needs a shunt in his brain. and there will be an incision in his head and a small incision near his abdomen.

On Thursday afternoon Dr. Price conducted the surgery and placed the shunt. Everything went well during the surgery. After the shunt surgery Srikar was sleeping all day. In the evening he woke up a little bit. But he was still not taking anything by mouth. On Friday he looked much better. We were moved to the upper floor out of the PICU. He started having his milk.

Saturday was a happy day for Srikar and all of us. We returned home by 2:00pm. Everything went well and Srikar is now much better. With the shunt in place he looks more active than I saw him on Tuesday. A tough week for our champ.. But champions never quit. :)

Please keep Srikar in your prayers and pray for his quick recovery and good health. Thank you all..

Hemispherectomy Reunion and post-op visit

Srikar had EEG and CT done last week. The startles that we are seeing do not register in the EEG like typical seizures, but from the way they looked in the video, his neurologist is leaning towards considering them and treating them as seizures. The CT did not indicate hydrocephalus. Regarding his post-op visit Dr. Carson (Neurosurgeon) is pleased with Srikar's post-op progress and thinks his myoclonic seizures might also be due to his nervous system still rewiring. Dr. Vining (neurologist) recommended couple of medicines for Srikar's Myoclonic seizures. Dr.Vining and Dr.Carson looked at the CT and think intracranial pressure is not an issue. Srikar started cooing, holding his head and definitely smiling a lot which he lost before surgery due to development regression from seizing. Because of the signs of progress, Dr.Vining and Dr.So do not think his current seizures need further surgery, at least in the short-term.

We had an amazing weekend at the reunion and it was nice meeting other kids and their families.

Srikar was also excited to be at the reunion. He didn't take his naps during daytime during those two days. He was looking at the people and lights and posing for the photographers.

Flying was breeze. Srikar was sleeping most of the time during our flight. We have met many familes and thier amazing kids and learned their stories. We did not get to meet all of the kids. Hoefully we will get to know more of them at the next reunion.