We are home and it has been to crazy for computer time.
The kids had an early out from school today so they are home. I took time to get my hair cut because it was making me nuts, and I just needed a little Mom time, too.
Lauren is changing meds so we have to bring one down while at the same time introduce a different one.
We now know that Lauren`s seizures are pretty well controlled and that is the most positive news in all of this.
Other than that there are lots of ifs, ands, buts, and maybes going on. That simply means that we have figured some things out and need to investigate them with some really serious testing. She does have some pressure issue, but it is not typical so what we do about it is up in the air. We also have cognitive issues and the answer to that is also not clear. We also have issues of multiple medications clashing, so we have to get that worked out.
All I know for sure in that the human brain is far to complicated for this brain of mine to understand all of it at one time. Lets just say I have never been all that interested in the study of neurology, but now I guess I had better gear up for some intense learning.
Oh, and for anyone out there who may just happen to have some anger issues, please NEVER take it out on your kid. They then have to live with some really tough stuff, FOREVER if you do!!!
Wednesday, November 30, 2011
Tuesday, November 29, 2011
Finally?
Today is the day we have been both waiting for and dreading for quite a while now. Today we meet with the entire team to get some answers as to what has been going on with Lauren for more then a year now. We got part of the answer a year ago when the seizures were diagnosed, but there is more to this then that.
I don`t care what the answers are, oh I am hoping for the best, but whatever it is an answer is better then this not knowing anything and not having any idea where to go or what to do about it. I am just ready for an end to the mystery of all this.
So here is hoping things go well!!
I don`t care what the answers are, oh I am hoping for the best, but whatever it is an answer is better then this not knowing anything and not having any idea where to go or what to do about it. I am just ready for an end to the mystery of all this.
So here is hoping things go well!!
Sunday, November 27, 2011
Thanksgiving Has Come And Gone
The past several days have been, well busy, stressful, fun, and chaos.
We have had appointments, celebrated Thanksgiving, moved the last of Karre`s stuff to her place, and decorated for Christmas.
The appointments were first on the agenda. Lauren needed to be at the hospital by 6:15 am the day before Thanksgiving. She had Phenal, a lumbar puncher, an MRI with contrast, and dental work done. All of this needed to be done so we worked it out so that she would get Anestassia once rather than four times. We didn`t leave for home until 9:00 pm. It was a really long day. By the time we left they had begun running the lab work on her spinal fluid and had found bacteria in it. We don`t know what it is yet. I have spoken to the Dr. twice since then and they are still trying to figure it out. Lauren was not feeling well Thursday and Friday, but seems to be doing okay now, so we wait it out. We have an appointment with our neurologists on Tuesday and hopefully they will have some answers for us then if not before that time. What they found is not the usual stuff and it is growing, but then dies off so they are getting some specialist to look at it.
Thanksgiving day we were all home except for Jared who was cooking for a lot of other soldiers and then gong to one of his friend1s parents place to eat again. We had a nice dinner and then played some games. I am thankful that everyone is in the United States this holiday season.
Friday Rene` Karre, and I went downtown to get Lauren`s checking account set up and then we went to look around at the small shops. There were no lines and no crowds to deal with so it was fun. Trevor stayed at home with the kids. He had Hanna help him make banana bread. He was going to take it back to school with him, but he forgot it so Hanna and Paul will have a feast, they love the stuff. In the afternoon we hauled the rest of Karre`s stuff to her house and then the kids decorated the Christmas tree. I told them I didn`t care how they decorated it. They put silver, white, and purple ornaments on the tree. It looks nice. Rene` sat up making little snowmen to decorate the stair railing with.
I had not done laundry since Tuesday so by Saturday I had to take care of it. We were out of milk, bread, fruit, and eggs so I had to go get groceries, too.
Today Rene` and Trevor headed back to school. The semester is nearly over and they will have about a month off soon.
Of course we had a few Hanna blow ups, and chaos, too. She just operates that way and holidays bring out the best is sabotage tactics. When it does not work for her it just irritates her to no end. We know it is coming and are prepared to deal with whatever comes our way. Today she asked when we were going to play Uno and I told her we had done that on Thursday when she was up in her room screaming and she had missed it and she says "I guess I should stop missing all the fun stuff". Maybe, just maybe she will figure it out some day.
We have had appointments, celebrated Thanksgiving, moved the last of Karre`s stuff to her place, and decorated for Christmas.
The appointments were first on the agenda. Lauren needed to be at the hospital by 6:15 am the day before Thanksgiving. She had Phenal, a lumbar puncher, an MRI with contrast, and dental work done. All of this needed to be done so we worked it out so that she would get Anestassia once rather than four times. We didn`t leave for home until 9:00 pm. It was a really long day. By the time we left they had begun running the lab work on her spinal fluid and had found bacteria in it. We don`t know what it is yet. I have spoken to the Dr. twice since then and they are still trying to figure it out. Lauren was not feeling well Thursday and Friday, but seems to be doing okay now, so we wait it out. We have an appointment with our neurologists on Tuesday and hopefully they will have some answers for us then if not before that time. What they found is not the usual stuff and it is growing, but then dies off so they are getting some specialist to look at it.
Thanksgiving day we were all home except for Jared who was cooking for a lot of other soldiers and then gong to one of his friend1s parents place to eat again. We had a nice dinner and then played some games. I am thankful that everyone is in the United States this holiday season.
Friday Rene` Karre, and I went downtown to get Lauren`s checking account set up and then we went to look around at the small shops. There were no lines and no crowds to deal with so it was fun. Trevor stayed at home with the kids. He had Hanna help him make banana bread. He was going to take it back to school with him, but he forgot it so Hanna and Paul will have a feast, they love the stuff. In the afternoon we hauled the rest of Karre`s stuff to her house and then the kids decorated the Christmas tree. I told them I didn`t care how they decorated it. They put silver, white, and purple ornaments on the tree. It looks nice. Rene` sat up making little snowmen to decorate the stair railing with.
I had not done laundry since Tuesday so by Saturday I had to take care of it. We were out of milk, bread, fruit, and eggs so I had to go get groceries, too.
Today Rene` and Trevor headed back to school. The semester is nearly over and they will have about a month off soon.
Of course we had a few Hanna blow ups, and chaos, too. She just operates that way and holidays bring out the best is sabotage tactics. When it does not work for her it just irritates her to no end. We know it is coming and are prepared to deal with whatever comes our way. Today she asked when we were going to play Uno and I told her we had done that on Thursday when she was up in her room screaming and she had missed it and she says "I guess I should stop missing all the fun stuff". Maybe, just maybe she will figure it out some day.
Tuesday, November 22, 2011
All Grown Up
Yesterday Lauren turned eighteen so according to the world she is all grown up. Four other, very typical kids here have reached this mile stone and they are certainly not grown up yet so Lauren isn`t either.
When it comes to Lauren, physically she is a beautiful blonde, with huge blue eyes. Her braces will very soon come off her teeth and she will have a gorgeous smile, too.
In all other respects she is and will always be a little girl. She needs her meals prepared, clothes laundered, and home kept clean. She needs to be kept safe, cared for, and loved. She needs someone to deal with all of her many medical needs, handle her money, and make sure she is safe in the community. She likes to be very involved in all of this, but doing any of it on her own would be a disaster.
She still really likes to be read to, her favorite game is Sorry (we have played it hundreds of times), she still like purple anything and everything, and she still plays with her baby dolls often. She likes her hair fixed so Karre game her two feathers for her birthday.
What will this grown up life hold for her? Right now there are lots of unknowns. All I wish for her is that she be happy. I don`t care if she is someone in a grown up body who is still a kid, that`s just fine as long as she is happy with being who she is.
And now we can put November 21st back on the calendar. Dad kept telling Lauren that they forgot to put it on the calendar so she could not have a birthday and she just kept saying "Monday is my birthday, don`t forget"!
We could never forget the day Lauren was all grown up! We celebrated with purple and pink cake.and will go out to Applebees, her favorite restaurant next weekend when most of her siblings are home.
When it comes to Lauren, physically she is a beautiful blonde, with huge blue eyes. Her braces will very soon come off her teeth and she will have a gorgeous smile, too.
In all other respects she is and will always be a little girl. She needs her meals prepared, clothes laundered, and home kept clean. She needs to be kept safe, cared for, and loved. She needs someone to deal with all of her many medical needs, handle her money, and make sure she is safe in the community. She likes to be very involved in all of this, but doing any of it on her own would be a disaster.
She still really likes to be read to, her favorite game is Sorry (we have played it hundreds of times), she still like purple anything and everything, and she still plays with her baby dolls often. She likes her hair fixed so Karre game her two feathers for her birthday.
What will this grown up life hold for her? Right now there are lots of unknowns. All I wish for her is that she be happy. I don`t care if she is someone in a grown up body who is still a kid, that`s just fine as long as she is happy with being who she is.
And now we can put November 21st back on the calendar. Dad kept telling Lauren that they forgot to put it on the calendar so she could not have a birthday and she just kept saying "Monday is my birthday, don`t forget"!
We could never forget the day Lauren was all grown up! We celebrated with purple and pink cake.and will go out to Applebees, her favorite restaurant next weekend when most of her siblings are home.
Saturday, November 19, 2011
One Crazy Day
Yesterday was just one crazy day.
First the truck needed to go into the shop since some fuel line gasket cracked, so we spent money fixing that.
After getting the truck back the mini van went in to get an oil change, more money.
Next Karre and I headed out to run lots of errands. We got everything done except buying the groceries. My phone rang and it was the teacher calling me about Allen. (she seldom needs to call about him). He was being loud, crying, and stubborn. This all occurred after lunch time. We decided to let him chill and talk a little later to decide if she would be able to get him on the bus or if we would need to pick him up.
I continued doing what I was doing and the teacher called back about fifteen minutes later to tell me that Allen had a rash all over his stomach, so errand running came to a halt and we went to pick him up at school.
I decided that since Lauren is scheduled for several procedures next week that require Anestassia and she can not be exposed to any crap I would take him to Urgent Care and get this rash checked out.
We had been in the van for less then five minutes when Mr. Allen decided to start singing If You`re Happy And You Know It with the clapping and stomping too.
At that point I called the pediatrician who told me he would be back in the clinic in a couple of hours and we should bring Allen in then and he would have a look and that rash.
Since we had time we went and got the groceries that we hadn`t gotten before. Then we went to the clinic. No one has any idea what the rash is. I can not think of anything new that he might have gotten into, so we left with a wait it out plan.
When we got home I got the news that when Angie was driving my van back from the park some power steering thing went out, ssssoooooooo, now the van is back in the shop to be fixed.
I guess we are spending A LOT of money at the shop this month.
And the rash that was there yesterday has disappeared over night, thank goodness.
First the truck needed to go into the shop since some fuel line gasket cracked, so we spent money fixing that.
After getting the truck back the mini van went in to get an oil change, more money.
Next Karre and I headed out to run lots of errands. We got everything done except buying the groceries. My phone rang and it was the teacher calling me about Allen. (she seldom needs to call about him). He was being loud, crying, and stubborn. This all occurred after lunch time. We decided to let him chill and talk a little later to decide if she would be able to get him on the bus or if we would need to pick him up.
I continued doing what I was doing and the teacher called back about fifteen minutes later to tell me that Allen had a rash all over his stomach, so errand running came to a halt and we went to pick him up at school.
I decided that since Lauren is scheduled for several procedures next week that require Anestassia and she can not be exposed to any crap I would take him to Urgent Care and get this rash checked out.
We had been in the van for less then five minutes when Mr. Allen decided to start singing If You`re Happy And You Know It with the clapping and stomping too.
At that point I called the pediatrician who told me he would be back in the clinic in a couple of hours and we should bring Allen in then and he would have a look and that rash.
Since we had time we went and got the groceries that we hadn`t gotten before. Then we went to the clinic. No one has any idea what the rash is. I can not think of anything new that he might have gotten into, so we left with a wait it out plan.
When we got home I got the news that when Angie was driving my van back from the park some power steering thing went out, ssssoooooooo, now the van is back in the shop to be fixed.
I guess we are spending A LOT of money at the shop this month.
And the rash that was there yesterday has disappeared over night, thank goodness.
Friday, November 18, 2011
Not Today, Hanna
I had to take Hanna in for some x-rays and to arrange for some pretty nasty surgery she needs on her foot. Both feet need the surgery, but one is getting worse very quickly so we are going to do that one now and hold off on the other one for awhile if it stays stable. (We need lots of prayers and hope for that to happen).
There are many days that she just drives everyone nuts just being herself so I am sure it is going to require more patience that usual to deal with her in a cast for six to ten weeks. We decided that it would be better to have her in a cast in the winter time. When it gets nice outside we need to be able to send her outside to burn off all that extra energy and she can yell out there and bother the neighbors for awhile.
Anyway, when she got up this morning she was all worried that we were going to get her foot fixed today. Trying to get it through to her that this is not happening until after Thanksgiving, Christmas, and a few other events was not sinking in, so I guess we will be making a calendar so that she can mark off the days. I don`t like to do that with her because she does not understand and then gets herself all worried and anxious so she can not enjoy anything that is happening now.
I am just going to put the entire affair on hold so I can enjoy the holidays and get lots of other stuff done before I have to reign her in and keep her calm. I better load lots of reading material on my Nook so I have something to do while she colors entire coloring books.
I will probably be saying it`s not today Hanna thousands of times before we get to January 11, 2012.
There are many days that she just drives everyone nuts just being herself so I am sure it is going to require more patience that usual to deal with her in a cast for six to ten weeks. We decided that it would be better to have her in a cast in the winter time. When it gets nice outside we need to be able to send her outside to burn off all that extra energy and she can yell out there and bother the neighbors for awhile.
Anyway, when she got up this morning she was all worried that we were going to get her foot fixed today. Trying to get it through to her that this is not happening until after Thanksgiving, Christmas, and a few other events was not sinking in, so I guess we will be making a calendar so that she can mark off the days. I don`t like to do that with her because she does not understand and then gets herself all worried and anxious so she can not enjoy anything that is happening now.
I am just going to put the entire affair on hold so I can enjoy the holidays and get lots of other stuff done before I have to reign her in and keep her calm. I better load lots of reading material on my Nook so I have something to do while she colors entire coloring books.
I will probably be saying it`s not today Hanna thousands of times before we get to January 11, 2012.
Thursday, November 17, 2011
Busy Around Here
I have been busy with the routine of pre-op physical for Lauren, surgery consult for Hanna, Social Security Administration run around for Lauren, guardianship paperwork for Lauren and Allen, and then taking care of the day to day stuff as well. That is what raising special needs kids is all about all the time. It is a good thing I have done this stuff for so long that it isn`t even stressful any more, just a part of the routine.
We have also been helping Karre get her place in order. The white walls, baby blue carpet, and gold fixtures are disappearing quickly. The place is looking pretty good. I pretty much like the colors she chose to paint the place with, although I don`t think I would ever go for a pink bedroom. It is her thing though with sort of a Paris theme going and it looks very nice. She decorated the other bedroom very cute with bright green walls and bedding with pink and blue owls on it for her siblings to use when they go stay with her. She wanted to know if Allen and Paul would mind if it was a bit girly. I told her they wouldn`t mind at all. I don`t think Paul will slow down enough to notice and Allen is pretty much fine with whatever is available.
Sorry to leave everyone out there with no news, but it has been busy around here and since the holidays are coming up soon I don`t think think things are going to quiet down for a while.
We have also been helping Karre get her place in order. The white walls, baby blue carpet, and gold fixtures are disappearing quickly. The place is looking pretty good. I pretty much like the colors she chose to paint the place with, although I don`t think I would ever go for a pink bedroom. It is her thing though with sort of a Paris theme going and it looks very nice. She decorated the other bedroom very cute with bright green walls and bedding with pink and blue owls on it for her siblings to use when they go stay with her. She wanted to know if Allen and Paul would mind if it was a bit girly. I told her they wouldn`t mind at all. I don`t think Paul will slow down enough to notice and Allen is pretty much fine with whatever is available.
Sorry to leave everyone out there with no news, but it has been busy around here and since the holidays are coming up soon I don`t think think things are going to quiet down for a while.
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