Christmas Day
Well Christmas was very different this year. Not just the crazy, wide open 2 year old that has taken over the house, just everything. We really thought this was going to be “The best Christmas ever” as Austin put it. With all of the medical worries with Izzy and Buck’s mom it was tense, tiring, and trying.
For those who don’t know, Buck’s mom fell off the second floor balcony a few weeks ago while hanging garland. Just the week before I had invited them over to meet their new granddaughter (they were against the adoption, long story) and it all went well as could be expected with his parents. I am glad they came over when they did because it will be a long time before Martha holds a 2 y.o.
After falling, she was airlifted to Tampa General, in ICU, had a spinal fusion, immobilized in a big brace, has pneumonia and now is in rehab. There is a lot more to the story but I do not have patience for the details right now.
Well Christmas day Buck’s dad was sick and his sister busy, so Buck left us to go sit with his mom. I drove to my brother’s house for Christmas dinner, and he brought food to his mom. I understand that no one should be alone on Christmas, but it added a real damper to our family’s day. Austin was very down until he got to play the wii at my brother’s house, and I was a single parent to chase Izzy at a house with an unsecured pool. My sister, mom, and friend Della helped a lot but I was still exhausted.
The good parts:
Izzy loved to play with tissue paper and boxes
Austin was happy with his presents (11 is a weird age, not a child, not a teen)
Buck cleaned the stove
No seizures!!!!!!!
I am grateful to be together as a family, but feel kind of cheated out of my planned Christmas as a forever family of four. Izzy was super cute walking around with her Dora backpack on. It looked like she was leaving home to runaway. I wouldn’t blame her after all she has been through. I will try to post the video. Ignore the background noise I don’t know how to edit it out.
Sunday, December 30, 2007
Thursday, December 27, 2007
The Seizure Files
Since I cannot remember who I have told what, mostly due to exhaustion from the whole ordeal I will sum it up here with a cut and paste approach from different postings from my yahoo groups and personal e-mails.
Seizure #1
First of all for those who don't know Isabella had a series of seizures the day after immunizations while I was out of town with my parents. She turned a blue color around her lips and that is when we called 911 and went to Bartow Regional via ambulance. We thought this was related to her immunizations but due to the severity we made an appointment with a peds neurologist. We were seen for an EEG and had an appointment set up for the neurologist a few weeks later. she had a history of febrile seizures in China, only 2 both last spring.
She went in for a sleep deprived EEG (oh what fun for sleep deprived mom) in which she screamed bloody murder, and then went to sleep on cue. We were called the next day and asked to come in immediately. Of course this terrified me. This is what we found out.
What we know:
Isabella has multiple spikes (indicators of seizure activity and potential for) in all areas of her EEG. Wake, sleeping, and with the strobe light. They feel she is at very high risk for continued seizure activity and appears that she has been having some petimal seizures throughout the day. I apparently missed the boat on this one. I had put down her lack of response when talking to her to the hearing problem she is having and the blinking episodes to being Izzy.
She had a lot of spikes located in one section of the brain that they want to investigate further with a sedated MRI with and without contrast (Teresa B, I think this would be a good time to visit FL as this is right up your alley). They do not know what is causing it and it is a concern. There are many things that could cause it, but we are going to try and be positive and not speculate on all of the possibilities.
She is going to be on Depakote 2 times a day for the next 2 years before they will consider taking her off of it. We will carry emergency medications, Diastat, everywhere for the next 2 years and must be seen the next day after having a seizure.
She is never to get the Pertussis component again and will have a DT instead of a DTaP.
She will see the ENT next for her chronic ear infection.
The doctor was impressed with Izzy’s overall physical condition and stated that the children she sees from China are in much better shape than some of the other countries, but Izzy really appears healthy and well cared for. She reviewed the medical records/pictures and was shocked that foster care alone without physical therapy was able to improve her physical and cognitive development so drastically. She said her arm in the initial pictures appeared to indicate CP but it would not have improved and even a contracture would need therapy (her foster family really did a good job with her). She was puzzled that the physical exam did not correlate with the readings on the EEG.
My stress level is still very high and will be until this MRI is done and we know everything is okay or at least know what we are dealing with. Our attempt to obtain blood today was unsuccessful with 2 sticks, one to each arm and no blood. Due to the large number of test ( typical post china test), and the test for the neurologist, and then the follow up drug levels we are looking at least 3 blood draws over the next 2 weeks I can only hope that each one does not require multiple attempts. Right now the earliest sedated appointment for the MRI is the end of Jan. I am going to continue to call around in hopes of a cancellation.
After talking to a good friend last night that has spent a lot of time with Izzy, I feel better about the situation from the standpoint of I think it is going to be something manageable, and not some horrible diagnosis. She is so active and vivacious, each day she seems to blossom more; it seems unlikely that this could be a progressive, debilitating diseases process.
Thank you again to everyone, continued prayers are very much appreciated as well. I will update you all as I know more.
Trish
(mother to the very bizzy IzzyB)
Seizure #2
The Sat. before Christmas, just days after seeing the neurologist, Izzy woke up her usual self full of P&V. We were trying to play quietly as not to awaken the boy child. This consisted of her running around like a banshee in our bedroom with me saying shhhhh, don't wake GeGe. Suddenly she was limp on her R side and kept falling over. She could not sit up and looked like she had a stroke. We were told to take her to APH (the children's hospital) and by the time we got there she had at least one seizure and was limp as a rag doll. After i was thoroughly searched by security I was allowed in. The rest was the worse care i had ever experienced and will be left for my "What is wrong with health care" post. They gave her a loading dose of depakote without checking a level, and sent us on our way. We made it through Christmas (also another post) and saw the neurologist The next day.
F/U Neuro appointment
We saw the neurologist yesterday who ordered a stat MRI with and without contrast and yes sedation. Well she was out all last night and still couldn't walk until after 2 pm (when she got up from her nap) today. Chloral hydrate is some powerful stuff. I will say it is the quietest she has ever slept. The people at the radiology center were great.
The radiologist talked to me right after the scan. He found no masses, bleeds or aneurysms. Apparently the neurologist was really looking for a old or new stroke or pathology due to the abnormal firings on the EEG in the left hemisphere. Well today after the full and careful reading was done she called to say that Izzy's left temporal and parietal lobes are smaller than the right. It is probably a congenital abnormality or resulted from poor nutrition and stimulation as an infant. She hopes she will grow out of the seizures but is not sure and we need to do some real stimulation and so forth with her. I need to get her evaluated by developmental services.
So I feel much better knowing what we have to deal with. The neurologist is still so surprised at her lack of motor deficits with the findings. I am glad she did not start this in China.
Tomorrow, more blood draws. I am surprised with all she has been through that she still gives me hugs and kisses. What a hard 7 weeks home it has been for her. Thank you for every one's prayers and support.
Trish
Seizure #1
First of all for those who don't know Isabella had a series of seizures the day after immunizations while I was out of town with my parents. She turned a blue color around her lips and that is when we called 911 and went to Bartow Regional via ambulance. We thought this was related to her immunizations but due to the severity we made an appointment with a peds neurologist. We were seen for an EEG and had an appointment set up for the neurologist a few weeks later. she had a history of febrile seizures in China, only 2 both last spring.
She went in for a sleep deprived EEG (oh what fun for sleep deprived mom) in which she screamed bloody murder, and then went to sleep on cue. We were called the next day and asked to come in immediately. Of course this terrified me. This is what we found out.
What we know:
Isabella has multiple spikes (indicators of seizure activity and potential for) in all areas of her EEG. Wake, sleeping, and with the strobe light. They feel she is at very high risk for continued seizure activity and appears that she has been having some petimal seizures throughout the day. I apparently missed the boat on this one. I had put down her lack of response when talking to her to the hearing problem she is having and the blinking episodes to being Izzy.
She had a lot of spikes located in one section of the brain that they want to investigate further with a sedated MRI with and without contrast (Teresa B, I think this would be a good time to visit FL as this is right up your alley). They do not know what is causing it and it is a concern. There are many things that could cause it, but we are going to try and be positive and not speculate on all of the possibilities.
She is going to be on Depakote 2 times a day for the next 2 years before they will consider taking her off of it. We will carry emergency medications, Diastat, everywhere for the next 2 years and must be seen the next day after having a seizure.
She is never to get the Pertussis component again and will have a DT instead of a DTaP.
She will see the ENT next for her chronic ear infection.
The doctor was impressed with Izzy’s overall physical condition and stated that the children she sees from China are in much better shape than some of the other countries, but Izzy really appears healthy and well cared for. She reviewed the medical records/pictures and was shocked that foster care alone without physical therapy was able to improve her physical and cognitive development so drastically. She said her arm in the initial pictures appeared to indicate CP but it would not have improved and even a contracture would need therapy (her foster family really did a good job with her). She was puzzled that the physical exam did not correlate with the readings on the EEG.
My stress level is still very high and will be until this MRI is done and we know everything is okay or at least know what we are dealing with. Our attempt to obtain blood today was unsuccessful with 2 sticks, one to each arm and no blood. Due to the large number of test ( typical post china test), and the test for the neurologist, and then the follow up drug levels we are looking at least 3 blood draws over the next 2 weeks I can only hope that each one does not require multiple attempts. Right now the earliest sedated appointment for the MRI is the end of Jan. I am going to continue to call around in hopes of a cancellation.
After talking to a good friend last night that has spent a lot of time with Izzy, I feel better about the situation from the standpoint of I think it is going to be something manageable, and not some horrible diagnosis. She is so active and vivacious, each day she seems to blossom more; it seems unlikely that this could be a progressive, debilitating diseases process.
Thank you again to everyone, continued prayers are very much appreciated as well. I will update you all as I know more.
Trish
(mother to the very bizzy IzzyB)
Seizure #2
The Sat. before Christmas, just days after seeing the neurologist, Izzy woke up her usual self full of P&V. We were trying to play quietly as not to awaken the boy child. This consisted of her running around like a banshee in our bedroom with me saying shhhhh, don't wake GeGe. Suddenly she was limp on her R side and kept falling over. She could not sit up and looked like she had a stroke. We were told to take her to APH (the children's hospital) and by the time we got there she had at least one seizure and was limp as a rag doll. After i was thoroughly searched by security I was allowed in. The rest was the worse care i had ever experienced and will be left for my "What is wrong with health care" post. They gave her a loading dose of depakote without checking a level, and sent us on our way. We made it through Christmas (also another post) and saw the neurologist The next day.
F/U Neuro appointment
We saw the neurologist yesterday who ordered a stat MRI with and without contrast and yes sedation. Well she was out all last night and still couldn't walk until after 2 pm (when she got up from her nap) today. Chloral hydrate is some powerful stuff. I will say it is the quietest she has ever slept. The people at the radiology center were great.
The radiologist talked to me right after the scan. He found no masses, bleeds or aneurysms. Apparently the neurologist was really looking for a old or new stroke or pathology due to the abnormal firings on the EEG in the left hemisphere. Well today after the full and careful reading was done she called to say that Izzy's left temporal and parietal lobes are smaller than the right. It is probably a congenital abnormality or resulted from poor nutrition and stimulation as an infant. She hopes she will grow out of the seizures but is not sure and we need to do some real stimulation and so forth with her. I need to get her evaluated by developmental services.
So I feel much better knowing what we have to deal with. The neurologist is still so surprised at her lack of motor deficits with the findings. I am glad she did not start this in China.
Tomorrow, more blood draws. I am surprised with all she has been through that she still gives me hugs and kisses. What a hard 7 weeks home it has been for her. Thank you for every one's prayers and support.
Trish
Thursday, December 13, 2007
Pretty in Pink
I always wanted to use that title so I did. It is sad to have such a introverted, camera shy child.
Wednesday, December 12, 2007
Visit with Santa
Today was the day to visit Santa at the mall. I had this all planned out. Wednesday is early release so I would get Austin from school at 1:45, rush to Millennium mall at get the pics. In and out that easy. Well an hour and a half in line before our turn. Izzy did well. Afterwards Austin told me he is a mean Santa and had a mean voice and tone with him and Izzy. Who knows what really happened. Everyone has a bad day. I was happy for the pictures and happy that Izzy did not bite the Santa.
I guess I could have dressed the kids up more but I thought if I kept it low key and comfy I would have the best luck with Bizzy B. It is hard enough keeping her clothed without putting her in an uncomfortable dress with crinolines. We will save that for her next set of pictures.
Tuesday, December 11, 2007
Bizzy B and D.A.R.E. Graduation
For those of you that love to look at pictures of my kids, here they are. Izzy B just playing and Austin at his 5th grade D.A.R.E Graduation. Lake County Sheriff Department does a great job with the program. All of the 5th grade students were dressed in their D.A.R.E. shirts and excited about the program.
Izzy B was a little disruptive. Of course Austin's class all came over to see her afterwards. She loves the attention. I am still trying to pull my thoughts together to post about our little trip to the ED, it is still an emotional subject. No I have to figure out how to get her to sleep Monday when she has her EEG. I also need to set up our Christmas tree and decorate.
Thursday, December 6, 2007
Bizzy B
Okay, here it is. It is not the one I wanted to post but it worked. The music in the background is underdog from Austin's cell phone. This is how busy the b is all day, except yesterday for our visit to the ED and ride in the ambulance, but that is another story for a longer post.
Tuesday, December 4, 2007
Unable to upload video
Okay, I have tried for 2 days to upload a video of Bizzy B without luck. It is from my digital camera, is in Quick time format and within the size allowed. No luck. it keeps saying it cannot connect to blogger.com. I am a little irritated, mostly because I am unable to complete the task. Any suggestions out there?
Monday, December 3, 2007
Monkey Bread, return to work, and the Bizzy B
Since this post is a bunch of odds and ends I will take them one at a time:Monkey Bread: while eating breakfast at Cracker Barrel Sunday, a fiend's (Sandra's) high school daughter asked ma a peculiar question. She had to make a certain body part model and wanted to make it edible and asked me what would work for it. We debated the pro and cons of jello and decided on monkey bread as the choice. Since this poor family is from up north, they knew nothing of monkey bread. Austin, Izzy, and me agreed to help them out. Can you guys guess what the body part is? It was a group effort to complete it. Chris, Sandra, Auntie Lynn, Courtney, Austin, and of course IzzyB. What is monkey bread without someone acting like a monkey. Please post your guess in the comments section. I hope we get an A on it. Yes, I miss teaching that much that making monkey bread into body organs is fulfilling.
Today was my first day back to work. It was hard to leave the B in the hands of the daddy, but I did it. It was nice to talk to adults instead of wrapping creepy baby up a million times, feeding creepy baby, and listening to creepy baby go lalalalalala. No I am not calling my child creepy baby that is what we call the doll she carries around all of the time. She sleeps with it and it always must be near her. Of course Buck fed my poor untainted child McDonald's today instead of the food I had left for her. She is only 2 and already being poisoned!
The last thing is my BizzyB. We call her Bizzy B because she is always in motion. I will attempt to post a video of this perpetual motion machine to give you a glimpse into her day. Understand this goes on all day.
Tuesday, November 27, 2007
Just me and my shadow
Just me and my shadow, 2 dogs and a fish. Well today Buck is at work and Austin back to school. It is just me and IzzyB. The non-stop, attached to me, climbing monster.
She definitely acts attached to me when no one else is around, but add anyone else to the mix and she is all over them. It could be a friendly grandmother type, the nice neighbor, an ax murderer, homeless person that sleeps in a dumpster, an alien from outer space, as long as it is an option other than me she gives hugs, and blows kisses. When we are alone she acts like I am her best friend, hugs me and wants in my lap. So my options are move us to a deserted island.....just me and her, lock her in a tower like all fairy tale evil villains do, or live with coming in last. i haven't decided yet what would be best. I am enjoying the time alone with her, but really need to go to work. Decisions, decisions.
She definitely acts attached to me when no one else is around, but add anyone else to the mix and she is all over them. It could be a friendly grandmother type, the nice neighbor, an ax murderer, homeless person that sleeps in a dumpster, an alien from outer space, as long as it is an option other than me she gives hugs, and blows kisses. When we are alone she acts like I am her best friend, hugs me and wants in my lap. So my options are move us to a deserted island.....just me and her, lock her in a tower like all fairy tale evil villains do, or live with coming in last. i haven't decided yet what would be best. I am enjoying the time alone with her, but really need to go to work. Decisions, decisions.
Friday, November 23, 2007
Thanksgiving
This was a wonderful and exhausting day. The past 2 years have been spent waiting for the holidays when we would all be together as a family of 4. Well that is what we have.
IzzyB did well for her first time in a packed house full of people and many breakable items. She was on sensory overload so we ended up walking outside in the drizzle to help her relax. No meltdowns or fits just way too excited. I should have brought the pack and play to put her in but did not think of it. I guess I have to relearn how to be a mom for a toddler or at least for this toddler who is very different from my son. We were missing many of our usual crowd at dinner but that was a good thing. i think it would have been too much if everyone was there.
The most interesting thing was when my sister asked if i would go back to China with her to get a baby. First I said I am never going back, then I asked her if she remembered what she told me when I asked her to go, she did (she said no very quickly), then she said but now you know what to expect and do, and i finally said yes I would go with her. Very strange conversation. The whole time i am thinking my brother never should have pulled out, Kim could have their child. I know that is crazy, but i thought it. My sister wants a 3-4 y.o. girl. I think we could do that.
Anyways, my brother's former neighbor kept asking why we got a baby and Jason didn't. i kept saying I don't know. Maybe they need to be more open with people, instead of saying they couldn't get a baby! Anyways, so much for my rant. Here are the pics.
Wednesday, November 21, 2007
Wednesday, November 14, 2007
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