Sunday, January 1, 2012
Happy New Year!!! And a recap of the past few months..
Wow..and now it's 2012! It's amazing to think that we started the adoption process in May 2006, and our LID was January 22, 2007. If we were still on the NSN (non-special needs list), we would still be waiting for a referral. I can't believe how long the adoption time frame has grown, and I feel for all the waiting families. I am so glad we made the decision to adopt an older child..and one with a special need. No matter how difficult the past 19 months have been with Lulu's transition, I can't imagine any other child being ours.
We are still dealing with a lot of issues with Lulu and have seen many specialists. Lulu is still struggling with self regulation, anger, self injurious and anxiety issues. I'm sure most of it is stemming from past trauma. I am pretty sure some of it has to do with brain trauma as well. As I suspected, there was abuse in China. Lulu started talking separately to both me and Brad about things that happened to her. It was not a lot of information, but enough to know that she was violated and saw other children being mistreated. It breaks my heart and I just hope and pray that with time and therapy she will be able to fully attach, trust and self regulate her emotions much better. She has come along way in some areas, and is stuck in others.
Lulu had what we believe to be her first seizure on October 24. Brad flew to Hawaii 2 days earlier with his son. He earned the trip through his business, and the resort was adult only. There was no way we would both leave Lulu for a week. Lulu and I were having a great morning painting pumpkins, and then Lulu was about to get her bath. There was no warning and she started having her seizure as she was walking in the hallway. It was the scariest thing I've ever seen, and I actually thought she was having a stroke. I picked her up and laid her on her bed and called 911. The seizure lasted a couple minutes but Lulu lost her vision for about 10 minutes. She still couldn't see when rescue arrived, but then did shortly afterward. In the ER, they performed a CT scan. The ER doctor brought me to the computer to show me the image. It was shocking to see how much atrophy she has on the left side of her brain. The neurologist who saw her last year when we came back from China only had the CT scan report from China, and it was performed on an old CT. He was amazed with how well Lulu was functioning considering the amount of brain damage that was described on the report. The CT did not show the reason for the seizure, so we were admitted to the hospital and had to wait 2 days for an MRI and an EEG. The EEG showed seizure activity on the right, "good", side of her brain. They had already put her on IV anti-seizure medication, and the side effects made her erratic behavior even more uncontrollable. It was really, really bad. They called in a psychiatrist who wanted to further admit her for psychiatric work up. I knew that the environment, her father being gone, the new medication, lack of good sleep, etc, intensified her behaviors. I told the doctors we just needed to be released as soon as possible. It was the longest 3 days! We did have to change the anti-seizure medication because her behavior did not improve much when we got home. There haven't been any more seizures, and it sounds like the protocol is to keep her on the medication for a couple of years before doing another EEG. We have another follow up next month. I hate that she has to be on medication. From what I have read, children with cerebral palsy have a 40% chance of developing seizures. There was no mention of seizures from her medical records in China, but that doesn't mean she never had one.
As far as school goes, Lulu is doing pretty well. She has had some issues with her behavior but she has also gone several days with an "A" grade for behavior. I am very pleased with her school, and after a couple meetings, and after her seizure, she is now receiving OT in school, and other accommodations can be provided as well if she needs them. Since the first day of school she bonded with a girl in her class and they adore each other. She can be overbearing though, but is doing better at playing with other friends and sharing her friend with the other kids at school.
We are still dealing with a lot of issues with Lulu and have seen many specialists. Lulu is still struggling with self regulation, anger, self injurious and anxiety issues. I'm sure most of it is stemming from past trauma. I am pretty sure some of it has to do with brain trauma as well. As I suspected, there was abuse in China. Lulu started talking separately to both me and Brad about things that happened to her. It was not a lot of information, but enough to know that she was violated and saw other children being mistreated. It breaks my heart and I just hope and pray that with time and therapy she will be able to fully attach, trust and self regulate her emotions much better. She has come along way in some areas, and is stuck in others.
Lulu had what we believe to be her first seizure on October 24. Brad flew to Hawaii 2 days earlier with his son. He earned the trip through his business, and the resort was adult only. There was no way we would both leave Lulu for a week. Lulu and I were having a great morning painting pumpkins, and then Lulu was about to get her bath. There was no warning and she started having her seizure as she was walking in the hallway. It was the scariest thing I've ever seen, and I actually thought she was having a stroke. I picked her up and laid her on her bed and called 911. The seizure lasted a couple minutes but Lulu lost her vision for about 10 minutes. She still couldn't see when rescue arrived, but then did shortly afterward. In the ER, they performed a CT scan. The ER doctor brought me to the computer to show me the image. It was shocking to see how much atrophy she has on the left side of her brain. The neurologist who saw her last year when we came back from China only had the CT scan report from China, and it was performed on an old CT. He was amazed with how well Lulu was functioning considering the amount of brain damage that was described on the report. The CT did not show the reason for the seizure, so we were admitted to the hospital and had to wait 2 days for an MRI and an EEG. The EEG showed seizure activity on the right, "good", side of her brain. They had already put her on IV anti-seizure medication, and the side effects made her erratic behavior even more uncontrollable. It was really, really bad. They called in a psychiatrist who wanted to further admit her for psychiatric work up. I knew that the environment, her father being gone, the new medication, lack of good sleep, etc, intensified her behaviors. I told the doctors we just needed to be released as soon as possible. It was the longest 3 days! We did have to change the anti-seizure medication because her behavior did not improve much when we got home. There haven't been any more seizures, and it sounds like the protocol is to keep her on the medication for a couple of years before doing another EEG. We have another follow up next month. I hate that she has to be on medication. From what I have read, children with cerebral palsy have a 40% chance of developing seizures. There was no mention of seizures from her medical records in China, but that doesn't mean she never had one.
As far as school goes, Lulu is doing pretty well. She has had some issues with her behavior but she has also gone several days with an "A" grade for behavior. I am very pleased with her school, and after a couple meetings, and after her seizure, she is now receiving OT in school, and other accommodations can be provided as well if she needs them. Since the first day of school she bonded with a girl in her class and they adore each other. She can be overbearing though, but is doing better at playing with other friends and sharing her friend with the other kids at school.
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