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.

Neurologist appointment

Srikar had his neurologist (Dr. S0) appointment yesterday. Srikar is having startles from last few days, which we think might be seizures. Neurologist also mentioned that they might be myoclonic seizures, and wanted to do an 24 hr EEG monitoring. We mentioned him that we are going to John Hopkins next week for a follow up appointment and he scheduled monitoring for monday and tuesday, so that Dr. Vining at J.H can also check the results .

Srikar's First Brithday !!!

Today is Srikar's first birthday. Gokul uncle and I did the decoration last night and Srikar was looking at us and did not know what was going on.His uncles and maternal grandparents blessed him and celebrated his birthday . We missed his paternal grandparents who are in India. Thank you all who called and wished Srikar.

stomach bug

Srikar had stomach bug for last two days. He was throwing up whatever he ate. I tried some new food day before yesterday. Not sure if that caused it. We were scared those two days thinking if it is hydrocephalus. From yesterday he stopped throwing up and is taking some solids. His fevers are also down from yesterday. But he had two sizures today which lasted 10 sec.

He is doing well with his OT after I changed to morning sessions.He have one OT in the afternoon and I am trying to change it to morning. He had one afternoon session yesterday, but was very tired and looked exhausted due to the heat. He had his first PT session today morning which he didn't like because of the hard work. He was tired after the PT and had a short nap.

Srikar will be celebrating his 1st brithday this saturday, yaaay..he is going to be 1. :)

still running fever

Srikar is still having fever. We went to pediatrician for a blood test and urine test on monday to check for any infection. All the tests came out negative for infection. We went to OT this week twice, which didn't go well. During the first session he started having fever and became fussy. So I had to take him home. During his second visit all of the sudden he became fussy and was crying. Even though he was looking at the therapist, he was also looking for me to make sure I am there. We couldn't continue, so I had to take him home. Last two therapies were at afternoon. I am not sure if it is the time, or the room or the therapist he is not comfortable with. So next time we decided to try one session in the morning and a different room and see how he does.

His food intake also went down due to fever. Hopefully his fevers will go down soon.

fever

Srikar is having fever for the last two days. Due to his fever he is not taking much food. We went to pediatrician today and he wants us to wait couple of days for blood test as srikar is not showing any symptoms of infection. His fevers are ranging from 99.8 ~ 101.5. He is very irritated during his fever.

His neurologist increased his dosage of Depakote as he is having seizures. Hopefully his fever will be gone pretty soon. We are hoping to start his therapy from next week if he is fever free.

therapy

Srikar had his therapy evaluation this week for speech, PT(physical therapy) and OT(Occupational therapy). He will be going for a 1 speech/week, 2 PT/week and 2~3 OT/week. He is sleeping most of the time as he is feeling very tired after 15 ~20 mins of therapy.

He started smiling more and is making some sounds which we haven't heard before.
He is still having fevers and seizures once in a while, which we are hoping him to outgrow as time passes by. He is trying to hold his head again.

His incision and wound are healing well. It might take 2 more weeks for his wound to heal completely.