Our neurologist thinks Paul is the sweetest kid around and being his mom I am in agreement with her on that. This morning we had a very long appointment where we were discussing the recent changes in how his brain is working. He was playing with some little cars on the floor while we talked. She was asking about his diet. I explained that he has some sensory issues with textures and we work around those and that he does not like any kind of vegetables. Paul says "I like that yellow pineapple one Mom".
Today for the first time I got to see the damage that has been done to his brain. Basically the back 1/3 of his brain is missing and what is left of it is very fragmented. It is clear that at some point (likely shortly after he was injured) he had a major stroke. That is why the right side of his body is so much weaker then the left. It was also noted that there is significant pressure around the area of the brain where what he sees is processed. That pressure is the reason we have noticed significant decreases in his functional vision.
Now what ? The neurologist and neuro-surgeon get together and have a discussion that involves all the medical lingo and then the neurologist, Dad, and I have a discussion where she translates all of that into something that we can understand. It looks like we may end up with 2 kids with shunts. Does that sound like fun or what?
These kids are amazing! They have survived severe physical trauma to their brains. They have no idea how much I am learning from them. When I see them succeeding I am in awe of their courage, strength, and adaptability.
Tuesday, March 27, 2012
Monday, March 26, 2012
The Crazy Princess Crown
We had to leave early Friday morning to get Lauren hooked up to her circuit board for the weekend so we could do a 72 hour EEG. She had wires of all the colors of the rainbow all over her head. Paul told her that she had a crazy princess crown on. I guess he really does not have any idea what a princess crown looks like.
I got to watch her every minute of the time she was awake so that I could record what she was doing, for how long, when, where, with who, and every detail in between. There were many pages before we were done. It clearly shows her cognitive decline, dementia or whatever you want to call it.
We have a conference call scheduled for late Wednesday afternoon to decide how to best proceed. Lauren got to take a shower this morning. She was really excited about that. Since she could not get wet for the entire weekend she was a little confused. I think she found it hard to believe that Mom was not telling her to shower. Hanna thought it was not fair because she still had to shower.
I hope we do not have to do any more crazy princess crown wearing for awhile now.
I got to watch her every minute of the time she was awake so that I could record what she was doing, for how long, when, where, with who, and every detail in between. There were many pages before we were done. It clearly shows her cognitive decline, dementia or whatever you want to call it.
We have a conference call scheduled for late Wednesday afternoon to decide how to best proceed. Lauren got to take a shower this morning. She was really excited about that. Since she could not get wet for the entire weekend she was a little confused. I think she found it hard to believe that Mom was not telling her to shower. Hanna thought it was not fair because she still had to shower.
I hope we do not have to do any more crazy princess crown wearing for awhile now.
Thursday, March 22, 2012
Spring Cleaning
Hanna`s foot surgery affair is almost over. Hopefully we will be able to stop running to therapy after next week. I think she is doing well enough to put an end to therapy right now, but we will wait for the okay first. I had gotten a note from the foot doc that would allow her to return to adaptive phy-ed class. I sat her down to talk about how this was going to go. I had explained that it was okay for her to walk on that foot, she could do whatever it is they are doing in class, and she could run, too. I also told her that she might not be as fast a runner as she was before getting the foot fixed, for awhile and that is okay for now. We are not looking for speed at this point. We want her to use the foot, toes facing forward instead of out to the side as they used to be.
Hanna was not at all happy about the plan of returning to phy-ed. She told me she does not like sports and she did not want to do that class. (Hanna does not like any completion and she is a terrible loser). She has the ability to do very well with physical activity. They do not do things that are beyond her ability in this class. She has enjoyed doing her own thing outside of class and does not want to change that. I told her that she was going to class so get used to it. I put the note in her folder for her to take to school. Apparently,she decided to throw it away. When the teacher could not find the note I was called. The teacher and I, together asked her what she had done with that note and of course she could not tell us. She finally said that she had not thrown it in the garbage. When her teacher asked her "which garbage did you not throw it in"? (that was the perfect question), her eyes got huge, she shrugged her shoulders, and put her head down. She knew that she had been caught. We did not get a straight answer from her. We left it at that and headed to the orthodontist.
I took her to the orthodontist, she pouted, Dad asked her where the note was, she would not answer, and she went to bed pouting. The teacher and I had agreed that I would play phone tag with the doc and have them fax another note to the school. The next morning Hanna told Dad that they were going to go outside to pick up garbage for phy-ed and she did not want to do that. She went to school and admitted to throwing the note in the garbage at home, but since it was garbage day and Allen had done his garbage job, ti was not going to be found.
The consequence was to go pick up garbage in the neighborhood. I am not sure what they decided to do at school, but we had talked about having her pay for the fax to give her the idea that those things cost money. She gets to go to phy-ed and maybe pick up more garbage there as well. The neighborhood thanks you, Hanna for doing some much needed spring cleaning!
Hanna was not at all happy about the plan of returning to phy-ed. She told me she does not like sports and she did not want to do that class. (Hanna does not like any completion and she is a terrible loser). She has the ability to do very well with physical activity. They do not do things that are beyond her ability in this class. She has enjoyed doing her own thing outside of class and does not want to change that. I told her that she was going to class so get used to it. I put the note in her folder for her to take to school. Apparently,she decided to throw it away. When the teacher could not find the note I was called. The teacher and I, together asked her what she had done with that note and of course she could not tell us. She finally said that she had not thrown it in the garbage. When her teacher asked her "which garbage did you not throw it in"? (that was the perfect question), her eyes got huge, she shrugged her shoulders, and put her head down. She knew that she had been caught. We did not get a straight answer from her. We left it at that and headed to the orthodontist.
I took her to the orthodontist, she pouted, Dad asked her where the note was, she would not answer, and she went to bed pouting. The teacher and I had agreed that I would play phone tag with the doc and have them fax another note to the school. The next morning Hanna told Dad that they were going to go outside to pick up garbage for phy-ed and she did not want to do that. She went to school and admitted to throwing the note in the garbage at home, but since it was garbage day and Allen had done his garbage job, ti was not going to be found.
The consequence was to go pick up garbage in the neighborhood. I am not sure what they decided to do at school, but we had talked about having her pay for the fax to give her the idea that those things cost money. She gets to go to phy-ed and maybe pick up more garbage there as well. The neighborhood thanks you, Hanna for doing some much needed spring cleaning!
Tuesday, March 20, 2012
Total
It was just so nice yesterday after school that the kids all went outside so I was able to go through backpacks without Hanna and Paul throwing things everywhere.
When I got to Hanna`s folder i noticed she had written a note which read "Mom I need more total".
I was thinking to myself what in the world is she talking about. They have a grocery list where they find the words of the things they want to make for their own breakfasts at school so why would she write a note here asking for Total cereal? She does not even like the stuff, the cereal she asks for (and seldom gets) are Reeces Peanutbutter Cup Cereal and Cookie Crisp Sprinkles Cereal.
When she came in for dinner I asked her what kind of Total she wanted, the whole grain or the kind with raisins in it. She told me I was crazy and she did not like that stuff. I asked her why she had written a note asking for it then? I showed her the note and she read what she thought she had written which was "Mom I need more toothpaste".
She explained that the word total started with a t so she thought it was toothpaste.
We have tried to get it through to her that if you don`t know what you are doing or are not sure you need to ask for help. I am sure if she had asked someone in her classroom would have helped her find the word toothpaste.
Asking for help would keep her out of a lot of trouble that she gets herself into...
like the baby butt cream that she put all over herself thinking it was lotion.
like the knot she could not get out of her shoe string so she decided to cut it out, only thing is she cut a big hunk off the top of her shoe.
like the time she put dish washing liquid in the dish washer.
She always keeps us on our toes with the things she comes up with. Hanna always wants to be on her own island no matter what.
I put some total, as in total whitening toothpaste, in her backpack.
When I got to Hanna`s folder i noticed she had written a note which read "Mom I need more total".
I was thinking to myself what in the world is she talking about. They have a grocery list where they find the words of the things they want to make for their own breakfasts at school so why would she write a note here asking for Total cereal? She does not even like the stuff, the cereal she asks for (and seldom gets) are Reeces Peanutbutter Cup Cereal and Cookie Crisp Sprinkles Cereal.
When she came in for dinner I asked her what kind of Total she wanted, the whole grain or the kind with raisins in it. She told me I was crazy and she did not like that stuff. I asked her why she had written a note asking for it then? I showed her the note and she read what she thought she had written which was "Mom I need more toothpaste".
She explained that the word total started with a t so she thought it was toothpaste.
We have tried to get it through to her that if you don`t know what you are doing or are not sure you need to ask for help. I am sure if she had asked someone in her classroom would have helped her find the word toothpaste.
Asking for help would keep her out of a lot of trouble that she gets herself into...
like the baby butt cream that she put all over herself thinking it was lotion.
like the knot she could not get out of her shoe string so she decided to cut it out, only thing is she cut a big hunk off the top of her shoe.
like the time she put dish washing liquid in the dish washer.
She always keeps us on our toes with the things she comes up with. Hanna always wants to be on her own island no matter what.
I put some total, as in total whitening toothpaste, in her backpack.
Friday, March 16, 2012
The Purple Horse
Today was a big day for us! We had a neurology appointment at Gillette at 8:00 am, which meant that we were out the door by 6:00. I just love those mornings where you get to drive in the dark and pretty much have the highway to yourself until you hit the metro morning rush hour.
At any rate we were there to meet with two of the neurologists who have been trying to figure out what is going on with Lauren and FINALLY after eighteen months of testing, adjusting medications, and then some more evaluating we just might have figured it out. The news is not all that great, but I think this is really what is going on and we may be able to do something about it. They know that the temporal horns, which are some thingy that connects to the lateral ventricles of the brain and are a part of the system which regulates pressure have not closed. These temporal horns are supposed to be closed in girls by the time they turn 16. Lauren was 16 when we first started noticing cognitive declines in all areas.
So what do we do now? First thing up is a 72 hour EEG (what fun) just to make sure her seizure disorder is totally controlled. After that they will do a lumbar puncher and reduce her pressure to the normal range. This is a short term fix. By doing this we will be able to see if there are any improvements in her abilities. If there are then we go for the longer term solution which is to place a shunt to regulate her pressure. She is almost certainly going to have a shunt even if there are no improvements because her pressure needs to be regulated and monitored to be sure it does not get to high.
Everyone is feeling that the reason her temporal horns did not close has do with the traumatic injury to her head as an infant, therefore if the pressure can be regulated there will be improvements. The other possibility is that these things did not close because she may have some form of dementia, which has been the main thing they have been considering for quite some time now so that news is not shocking. Although dementia is diagnosed only when everything else has been ruled out, researchers are finding that temporal horns which do not function correctly may be a marker for some types of dementia.
One of the neurologist`s keeps telling Lauren that we are looking at all of the brown and white horses, then we found some black ones, and striped ones, and some spotted ones too, but we had to keep looking at her brain until we found the purple one. She is not understanding this analogy completely, but has been cooperating with all of this just to find that purple horse.
At any rate we were there to meet with two of the neurologists who have been trying to figure out what is going on with Lauren and FINALLY after eighteen months of testing, adjusting medications, and then some more evaluating we just might have figured it out. The news is not all that great, but I think this is really what is going on and we may be able to do something about it. They know that the temporal horns, which are some thingy that connects to the lateral ventricles of the brain and are a part of the system which regulates pressure have not closed. These temporal horns are supposed to be closed in girls by the time they turn 16. Lauren was 16 when we first started noticing cognitive declines in all areas.
So what do we do now? First thing up is a 72 hour EEG (what fun) just to make sure her seizure disorder is totally controlled. After that they will do a lumbar puncher and reduce her pressure to the normal range. This is a short term fix. By doing this we will be able to see if there are any improvements in her abilities. If there are then we go for the longer term solution which is to place a shunt to regulate her pressure. She is almost certainly going to have a shunt even if there are no improvements because her pressure needs to be regulated and monitored to be sure it does not get to high.
Everyone is feeling that the reason her temporal horns did not close has do with the traumatic injury to her head as an infant, therefore if the pressure can be regulated there will be improvements. The other possibility is that these things did not close because she may have some form of dementia, which has been the main thing they have been considering for quite some time now so that news is not shocking. Although dementia is diagnosed only when everything else has been ruled out, researchers are finding that temporal horns which do not function correctly may be a marker for some types of dementia.
One of the neurologist`s keeps telling Lauren that we are looking at all of the brown and white horses, then we found some black ones, and striped ones, and some spotted ones too, but we had to keep looking at her brain until we found the purple one. She is not understanding this analogy completely, but has been cooperating with all of this just to find that purple horse.
Thursday, March 15, 2012
Gotcha!
I know it every time Miss Hanna is up to no good. I can just tell by the way she acts with that sweeter then sweetness oozing out everywhere, what she says, or most of the time what she does not say, she is up to something. Whenever you ask her what is going on you get the "nothing Mom", shrug of the shoulders, and the deer in the headlights look.
I told Dad and Rene` this morning that she was up to something and I would figure it out. Moms are like that some how. When I went to take a shower this morning I hit the jack pot. A brand new tube of tooth paste was smeared all over the place. It was in the garbage can, on the floor, on the sink, and the toilet seat as well.
Gotcha, again kid! It looks like someone will get to clean bathrooms and buy tooth paste with her allowance. I suppose we will have to have the screaming, kicking, crying nonsense first, though.
I told Dad and Rene` this morning that she was up to something and I would figure it out. Moms are like that some how. When I went to take a shower this morning I hit the jack pot. A brand new tube of tooth paste was smeared all over the place. It was in the garbage can, on the floor, on the sink, and the toilet seat as well.
Gotcha, again kid! It looks like someone will get to clean bathrooms and buy tooth paste with her allowance. I suppose we will have to have the screaming, kicking, crying nonsense first, though.
Thursday, March 8, 2012
Found Snow
Since we have had very little snow here, maybe an inch now and then, or some shush/ice/rain, but basically a very very brown winter we went to Grand Forks, North Dakota to find some real snow. We spent last weekend with Rene` and Trevor on the campus of the University of North Dakota where they attend classes and I also did, as they will tell you, more then a few years ago. The photo on top is Gillette Hall in front and the Education building. I spent the majority of my time in class in Gillette Hall, third floor (up lots of stairs), to be specific. The photo below is the Ralph Engalstad Hockey Arena where we watched our Fighting Sioux sweep Minnesota State University in the final series before tournament play begins. There were no leather seats, marble floors with art work on them, or student season tickets when I was in college. We had to wait outside in the freezing cold before every game to battle for tickets and wear long johns to keep warm in the old arena.
It snowed on and off all weekend and of course there was wind blowing across the prairie as well. The top photo is the quad area which runs through the center of campus. The one below is looking from the Johnstone, Folton, Smith housing area ( where I lived all four years and where Trevor was a Residence Hall Assistant), across the English Cooley.
We took the kids swimming, ate, played cards, watched hockey,went to the mall, and found just enough snow to make it a real winter.
Still Here
Some one called yesterday, just to check since I have not blogged for a week. I am still here and busy as always. We went to North Dakota last weekend to find some snow. I have photos I will share later, for now a quick run down of things.
I have taken Hanna to therapy 2x. She is doing okay, but things are moving slower then expected, so we are going to have to step things up here and she is not going to like it at all.
I had to take Paul to Urgent Care since his ear hurt. He has an ear infection and is now on antibiotics and back to normal.
There is something wrong with our wheelchair accessible van. We have had it to the shop 3 times already and they can`t figure out what is going on. The check engine light is on again so it has to go back again. Karre took our big van and when she went to go to work this morning it would not start, so we have to figure that out, too.
The graduation drama just drags on and on. The latest is our legal people talked to the district`s legal person, but apparently that person does not know what the district`s policy is so they are now playing phone tag trying to get in contact with someone who is supposed to know what the policy is. Lets just say here that our legal people are getting tired of the run around. I understand since I was trying to get this done on my own for quite awhile and got the same treatment.
I had Allen to the clinic for his annual check up. I am thankful every day that his health is stable and requires little attention.
I had 2 PCA evaluations this week as well. That is always a venture in paper pushing that goes on forever, but it is done once again.
We have had Hanna drama to fill in the empty spaces of our days.
That pretty much sums up everything, nothing exciting just life moving along.
I have taken Hanna to therapy 2x. She is doing okay, but things are moving slower then expected, so we are going to have to step things up here and she is not going to like it at all.
I had to take Paul to Urgent Care since his ear hurt. He has an ear infection and is now on antibiotics and back to normal.
There is something wrong with our wheelchair accessible van. We have had it to the shop 3 times already and they can`t figure out what is going on. The check engine light is on again so it has to go back again. Karre took our big van and when she went to go to work this morning it would not start, so we have to figure that out, too.
The graduation drama just drags on and on. The latest is our legal people talked to the district`s legal person, but apparently that person does not know what the district`s policy is so they are now playing phone tag trying to get in contact with someone who is supposed to know what the policy is. Lets just say here that our legal people are getting tired of the run around. I understand since I was trying to get this done on my own for quite awhile and got the same treatment.
I had Allen to the clinic for his annual check up. I am thankful every day that his health is stable and requires little attention.
I had 2 PCA evaluations this week as well. That is always a venture in paper pushing that goes on forever, but it is done once again.
We have had Hanna drama to fill in the empty spaces of our days.
That pretty much sums up everything, nothing exciting just life moving along.
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