Sunday, March 26, 2017
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.
Thursday, December 29, 2011
We're Back!!!
So, it's been what...4 months since I've posted? Crazy!! I have been busy on weekends since July working on a certification for Pilates for Rehabilitation. My course work is finally over, but I have many review courses still and have to put in many, many hours before my practical and exam in April/May. So, that's why I'm so behind.
My little Lulu is getting so big!!! She has lost 4 teeth now, and 2 more are starting to come in. She is around 52 lbs, and about 49 inches tall. She is a silly girl and constantly has to be doing something. She is enjoying dance classes more and more, and it's the best decision I've made. She is becoming a lot more coordinated and her right side is a lot stronger. Her right hand continues to be weak, but fortunately her Nintendo DSi is helping to strengthen it, among other activities. She actually held herself up on a swinging bar for a few seconds several times. That's huge progress!
Lulu and I are heading to Orlando tomorrow to see Grandma and Grandpa, and Aunt Theresa. I will make a point of posting pictures and writing more when we get back. I have a lot of catching up to do!
My little Lulu is getting so big!!! She has lost 4 teeth now, and 2 more are starting to come in. She is around 52 lbs, and about 49 inches tall. She is a silly girl and constantly has to be doing something. She is enjoying dance classes more and more, and it's the best decision I've made. She is becoming a lot more coordinated and her right side is a lot stronger. Her right hand continues to be weak, but fortunately her Nintendo DSi is helping to strengthen it, among other activities. She actually held herself up on a swinging bar for a few seconds several times. That's huge progress!
Lulu and I are heading to Orlando tomorrow to see Grandma and Grandpa, and Aunt Theresa. I will make a point of posting pictures and writing more when we get back. I have a lot of catching up to do!
Tuesday, August 23, 2011
First Day of Kindergarten!!!
Lulu had a great first two days of kindergarten! I was so excited and emotional yesterday, but tried very hard to stay calm and cool for her sake. I was able to talk to the school principal and Lulu's teacher last week, and the guidance counselor has already called me twice. Very impressed so far with her school.
Monday, August 22, 2011
The past couple of months
So, I'm just not good at blogging. I don't have a lot of time to be on the computer, and it seems to take me a long time to post pictures, especially when I get so behind. Maybe I'll get better, but the next 6 months I am going to be slammed working on a certification related to my field.
A big milestone for Lulu this summer was that she finally started sleeping in her own room!! This started about 6 weeks ago. Now that we have the bed to ourselves, I don't know how we managed to have her sleep with us for so long. It seemed like once she was finally ready to make the transition, it was fairly easy for her. We do have some nights where she wants to sleep with us, but we consistently say no. She still doesn't like being in any room by herself, so I am so proud of her for finally sleeping in her own bed.
Lulu had her first dance recital a couple of months ago. She did great and had a lot of fun. She was actually a little comedian during the ballet number, losing her hair piece and being very silly on stage with it. Everyone started laughing. We just started up dance classes again last week. I am so glad she loves it and that it's something she wants to do.
We went to St. Martin for our vacation and for Brad's 50th birthday the beginning of August. Lulu did great on the plane and in the airports, but not so well while we were there. She had huge violent tantrums everyday. She did get a lot of pool time though, which she loves, and learned to swim without her floaties on. She is getting better each time we go to the pool. She's using her right side a lot! I was worried that she may not be able to open her snack bags, plastic containers and thermos for kindergarten, but it is not too difficult for her. Last year she would use her mouth a lot to help with opening things.
We have been attending counseling since Lulu is still having a hard time with self control, patience, expressing herself, and being told no. I would say that she is probably still grieving as well. We were really hoping that after this long, 15 months home, that the head banging would stop and that she could control her temper. She has come a long way overall, and I would say that there are a lot fewer tantrums. However, when she has them to the point of a complete meltdown, she is completely out of control and very physical to herself and us. She loves her therapist, and we were referred to a behaviorist. I hope with time and with her being able to express herself better and appropriately, that we will see less of these behaviors. It really seems like no one knows what to do to about the head banging, except for the obvious of making sure she doesn't injure herself. I hope the behaviorist can help us. Most of the time, Lulu is the sweetest little girl and behaves great. I always hesitate and wonder if I should even post about her behaviors. I have gotten comments from strangers in the past who read the blog. And I read a lot of blogs and never read about kids who were head bangers. Not on the personal blogs, anyway. So, if anyone is reading this and their adopted child has some of the same behaviors, I hope they know that they're not alone. After reading messages from parents on certain yahoo groups, I've learned that a lot of these behaviors are fairly common. I know it will get better in time, and hopefully with continued counseling she will learn how to express herself better.
Lulu started Chinese lessons yesterday at UNF. I was in a course over the weekend so Brad brought her. For some reason he thought I signed her up for Level 2, so they sat through the whole class before the teacher said Lulu should be in Level 1. I hope she didn't miss too much. I'm looking forward to bringing her next week. She doesn't want to speak Mandarin at all to Chinese people, but says she wants to learn how to read and write in Chinese. I'm curious to see how she is going to do in the classes.
We were able to meet Lulu's kindergarten teacher last week, and had time to talk to her about Lulu's background. We really like her teacher and I'm so excited that she is finally in kindergarten!
A big milestone for Lulu this summer was that she finally started sleeping in her own room!! This started about 6 weeks ago. Now that we have the bed to ourselves, I don't know how we managed to have her sleep with us for so long. It seemed like once she was finally ready to make the transition, it was fairly easy for her. We do have some nights where she wants to sleep with us, but we consistently say no. She still doesn't like being in any room by herself, so I am so proud of her for finally sleeping in her own bed.
Lulu had her first dance recital a couple of months ago. She did great and had a lot of fun. She was actually a little comedian during the ballet number, losing her hair piece and being very silly on stage with it. Everyone started laughing. We just started up dance classes again last week. I am so glad she loves it and that it's something she wants to do.
We went to St. Martin for our vacation and for Brad's 50th birthday the beginning of August. Lulu did great on the plane and in the airports, but not so well while we were there. She had huge violent tantrums everyday. She did get a lot of pool time though, which she loves, and learned to swim without her floaties on. She is getting better each time we go to the pool. She's using her right side a lot! I was worried that she may not be able to open her snack bags, plastic containers and thermos for kindergarten, but it is not too difficult for her. Last year she would use her mouth a lot to help with opening things.
We have been attending counseling since Lulu is still having a hard time with self control, patience, expressing herself, and being told no. I would say that she is probably still grieving as well. We were really hoping that after this long, 15 months home, that the head banging would stop and that she could control her temper. She has come a long way overall, and I would say that there are a lot fewer tantrums. However, when she has them to the point of a complete meltdown, she is completely out of control and very physical to herself and us. She loves her therapist, and we were referred to a behaviorist. I hope with time and with her being able to express herself better and appropriately, that we will see less of these behaviors. It really seems like no one knows what to do to about the head banging, except for the obvious of making sure she doesn't injure herself. I hope the behaviorist can help us. Most of the time, Lulu is the sweetest little girl and behaves great. I always hesitate and wonder if I should even post about her behaviors. I have gotten comments from strangers in the past who read the blog. And I read a lot of blogs and never read about kids who were head bangers. Not on the personal blogs, anyway. So, if anyone is reading this and their adopted child has some of the same behaviors, I hope they know that they're not alone. After reading messages from parents on certain yahoo groups, I've learned that a lot of these behaviors are fairly common. I know it will get better in time, and hopefully with continued counseling she will learn how to express herself better.
Lulu started Chinese lessons yesterday at UNF. I was in a course over the weekend so Brad brought her. For some reason he thought I signed her up for Level 2, so they sat through the whole class before the teacher said Lulu should be in Level 1. I hope she didn't miss too much. I'm looking forward to bringing her next week. She doesn't want to speak Mandarin at all to Chinese people, but says she wants to learn how to read and write in Chinese. I'm curious to see how she is going to do in the classes.
We were able to meet Lulu's kindergarten teacher last week, and had time to talk to her about Lulu's background. We really like her teacher and I'm so excited that she is finally in kindergarten!
Sunday, June 12, 2011
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