Irreparable damage in the frontal lobe...nothing further can be regained now. Now to find a nursing home that will accept her - a challenge with the damage sustained. There's many many questions going through my mind...could this have been prevented? Should or could it have been caught sooner? What triggered the immune response that caused the damage? Is this something that can be inherited? I'm sure there's more but right now those are top...and I don't know if there are answers.
I think I'm kind of numb...but not really surprised. Just wish I lived closer.
Friday, February 19, 2010
Wednesday, February 10, 2010
Sitting here at the computer having my second cup of coffee...thinking I will probably need to make another pot. We were released from school early yesterday due to weather and are on a snow day today...Dipstick is on his second snow day in a row. He spent a good part of yesterday getting his unfinished homework done and is now in the shop with the other boys helping B.
The snow seems to be moving out of the area - clouds are lifting and the day is getting brighter. We probably got at least 5-6 inches in the last 24 hours with the possibility of another 1-3 today along with lots of blowing and drifting. Roads are definitely bad though we see trucks "flying" past here if they go past at all. One certainly can't put on tennis shoes and walk out to the shop though...unless one wants wet feet.
On my agenda for today is some basic housecleaning, laundry and working on shop books and medical bills. Additionally since it is a snow day I really want to get the Christmas tree down...my sister is amused that it's not down yet but I confess to having had other things on my mind. I plan to have Squirrel help me with that later today.
As far as Squirrel's cardiology appointment went...I was very pleased. The doctor spent a long time talking with us and explaining things that had to be ruled out and why. Bottom line is that there is nothing major, life threatening wrong with his heart or in his brain. Basically the rapid growth spurt he's had since last August has caused the mechanism that controls his blood pressure to not work totally correctly and he had a common fainting spell. (Technical name is neurocardiogenic syncope). It is more common in girls than boys...nothing my family does can be simple apparently. Most people with it outgrow it by the time they are 19 and treatment is usually as simple as increasing fluid and salt intake. For Squirrel this means carrying a water bottle at all time - including while at school which requires a doctor's note - and salt tablets as he does not like to add salt to his food. We do still have to have a tilt table test to confirm the diagnosis and provide background if medication is ultimately needed. I don't expect we will need to add medication because he's had no other episodes since that one. Again...while it's sad that we are left with long term damage from that one episode things could have been much worse and I'm thankful that's all we have to deal with. God has a plan even when we don't see it.
The snow seems to be moving out of the area - clouds are lifting and the day is getting brighter. We probably got at least 5-6 inches in the last 24 hours with the possibility of another 1-3 today along with lots of blowing and drifting. Roads are definitely bad though we see trucks "flying" past here if they go past at all. One certainly can't put on tennis shoes and walk out to the shop though...unless one wants wet feet.
On my agenda for today is some basic housecleaning, laundry and working on shop books and medical bills. Additionally since it is a snow day I really want to get the Christmas tree down...my sister is amused that it's not down yet but I confess to having had other things on my mind. I plan to have Squirrel help me with that later today.
As far as Squirrel's cardiology appointment went...I was very pleased. The doctor spent a long time talking with us and explaining things that had to be ruled out and why. Bottom line is that there is nothing major, life threatening wrong with his heart or in his brain. Basically the rapid growth spurt he's had since last August has caused the mechanism that controls his blood pressure to not work totally correctly and he had a common fainting spell. (Technical name is neurocardiogenic syncope). It is more common in girls than boys...nothing my family does can be simple apparently. Most people with it outgrow it by the time they are 19 and treatment is usually as simple as increasing fluid and salt intake. For Squirrel this means carrying a water bottle at all time - including while at school which requires a doctor's note - and salt tablets as he does not like to add salt to his food. We do still have to have a tilt table test to confirm the diagnosis and provide background if medication is ultimately needed. I don't expect we will need to add medication because he's had no other episodes since that one. Again...while it's sad that we are left with long term damage from that one episode things could have been much worse and I'm thankful that's all we have to deal with. God has a plan even when we don't see it.
Monday, February 8, 2010
Been back from Ontario since a week ago today...had lots to process. Found myself fighting tears at odd times throughout the week...usually over stuff having nothing to do with our trip to Ontario. I'm so glad that the boys and I went...it was absolutely wonderful to see all my siblings together for just a few minutes..and to be able to get a picture. I need to remember to get it onto a disc at one of the big box stores so I can put it on the computer...as well as get copies. Traveling went well...except we got "randomly selected" for a more extended border crossing investigation. At least the roads were good and we didn't have major snow to deal with either way. Seeing Mom was definitely difficult...leaving for me was even more difficult though I know she doesn't remember. We have a new diagnosis...BetaAmyloid Primary Associated Cerebral Angiitis ....not cancer though treatment options are not really any better. And it's only treatable. Having said that...she is responding to treatment at this point in time. Unfortunately she is still not able to be cared for at home...and whether or not that time will come is questionable.
Squirrel...we had his follow-up ENT appointment on the 26th. All the hearing tests were redone as was an additional one. It was a long day - and he missed school the entire day which was not fun. The outcome was that barring a miracle the hearing loss is permanent and the doctor did not really seem optimistic about a hearing aid being of any assistance. Being as what he described required surgery to install a titanium plate in his skull we are not pursuing that option. Today we see a pediatric cardiologist to see if there were any heart related reasons for his passing out. I don't want to keep hauling him to doctors but at the same time I feel that if there is a medical reason it happened we need to know so we can hopefully prevent future episodes.
We ended up having 2 snow days last month - not for snow but for ice. I was very thankful for the second one - on the 22nd - I had been in the "city" Thursday night with Dipstick and really could feel the ice on the roads coming home. We had 2 times of sliding - the second was very scary as I thought for sure I was going to lose complete control. Much urgent praying was done under my breath - especially after I realized there was already a car off in the field.
Stretch is doing fine just very busy with choir and another play. There will be just one performance of this play - written by a senior so a once-in-a-lifetime chance. In two weeks choir will be participating at the state level in a music contest as an ensemble.
I'd better scoot....need to get dishwasher loaded and some picking up done before I have to run again. (I was going to add a picture this time but can't remember how to get it up...sorry)
Squirrel...we had his follow-up ENT appointment on the 26th. All the hearing tests were redone as was an additional one. It was a long day - and he missed school the entire day which was not fun. The outcome was that barring a miracle the hearing loss is permanent and the doctor did not really seem optimistic about a hearing aid being of any assistance. Being as what he described required surgery to install a titanium plate in his skull we are not pursuing that option. Today we see a pediatric cardiologist to see if there were any heart related reasons for his passing out. I don't want to keep hauling him to doctors but at the same time I feel that if there is a medical reason it happened we need to know so we can hopefully prevent future episodes.
We ended up having 2 snow days last month - not for snow but for ice. I was very thankful for the second one - on the 22nd - I had been in the "city" Thursday night with Dipstick and really could feel the ice on the roads coming home. We had 2 times of sliding - the second was very scary as I thought for sure I was going to lose complete control. Much urgent praying was done under my breath - especially after I realized there was already a car off in the field.
Stretch is doing fine just very busy with choir and another play. There will be just one performance of this play - written by a senior so a once-in-a-lifetime chance. In two weeks choir will be participating at the state level in a music contest as an ensemble.
I'd better scoot....need to get dishwasher loaded and some picking up done before I have to run again. (I was going to add a picture this time but can't remember how to get it up...sorry)
Friday, January 29, 2010
Thursday, January 21, 2010
On a snow day today...school canceled due to freezing rain. There is nothing here yet but apparently on the main east/west highway south of here it is lightly raining and freezing on contact. I am rather glad I don't have to try to drive the bus in this...even though on my route it isn't likely to be too bad yet. It's the southern routes in the district that are bad.
Updates...Not really sure where to start so this will likely be rambling. Mom is still in the hospital...she has been diagnosed with Primary Lymphoma of the brain. Basically it started in the brain and as of now has not spread outside the brain. Chemo is hopefully going to be started yet this week...
Squirrel is doing pretty much the same with his hearing. The ENT had lots of tests done right there in the office - that was nice. At one point Squirrel looked at me and said "I think I failed Mom" - which pretty much was true as far as hearing stuff went. ENT said that he didn't have much hearing at all in that ear and wanted to try a course of steroids. If they helped then it would probably come back...if they didn't it likely would not. So...we have done the steroids and are scheduled to go back for more testing on the 26th and will get results the same day. I am not expecting any new news...and he is compensating very well.
B and Dipstick's passports arrived yesterday in the mail. So now if a trip north needs to be made that involves all of us it can be done.
Better scoot for now and try to get some stuff around the house done...Will try to do a sooner update - especially since I've taken some fun pictures recently.
Updates...Not really sure where to start so this will likely be rambling. Mom is still in the hospital...she has been diagnosed with Primary Lymphoma of the brain. Basically it started in the brain and as of now has not spread outside the brain. Chemo is hopefully going to be started yet this week...
Squirrel is doing pretty much the same with his hearing. The ENT had lots of tests done right there in the office - that was nice. At one point Squirrel looked at me and said "I think I failed Mom" - which pretty much was true as far as hearing stuff went. ENT said that he didn't have much hearing at all in that ear and wanted to try a course of steroids. If they helped then it would probably come back...if they didn't it likely would not. So...we have done the steroids and are scheduled to go back for more testing on the 26th and will get results the same day. I am not expecting any new news...and he is compensating very well.
B and Dipstick's passports arrived yesterday in the mail. So now if a trip north needs to be made that involves all of us it can be done.
Better scoot for now and try to get some stuff around the house done...Will try to do a sooner update - especially since I've taken some fun pictures recently.
Wednesday, January 6, 2010
Today was beautiful...cold, slightly, occasionally sunny...the trees were beautiful with their coating of "white ice". It wasn't the crystal clear ice I've seen in the past but ice mixed with snow. It's been kind of neat to hear the tinkling in the trees as the ice-coated branches rub against each other. It is still cold and we are under a winter storm advisory from the wee morning hours tomorrow until Friday afternoon.
Today overall has been a fairly productive day. I was able to get Squirrel an appointment with an ENT for tomorrow morning...I was surprised to get in so quickly but also thankful. That is one thing off my mind because at least we will hopefully find out if it's a temporary condition or a permanent one. I was also able to find the paperwork needed to apply for passports for B and Dipstick. I have some clothes laid out in case of needing to make a quick trip north.
Mom has been in the hospital since Monday. Right now my sister, brother and sister-in-law are there supporting Dad and Mom and I'm in a holding pattern. Doctors are not sure what the exact problem is.
I've got some stuff to finish before bed so had better go for now...have been waiting on a phone call and think I'm going to try calling for an update myself.
Today overall has been a fairly productive day. I was able to get Squirrel an appointment with an ENT for tomorrow morning...I was surprised to get in so quickly but also thankful. That is one thing off my mind because at least we will hopefully find out if it's a temporary condition or a permanent one. I was also able to find the paperwork needed to apply for passports for B and Dipstick. I have some clothes laid out in case of needing to make a quick trip north.
Mom has been in the hospital since Monday. Right now my sister, brother and sister-in-law are there supporting Dad and Mom and I'm in a holding pattern. Doctors are not sure what the exact problem is.
I've got some stuff to finish before bed so had better go for now...have been waiting on a phone call and think I'm going to try calling for an update myself.
Friday, January 1, 2010
Happy New Year
Happy New Year! May 2010 be a year of growth and blessing to all.
This morning we have snow coming down...counties directly west and north of us are expected to have 8-12 inches last I checked so we will certainly get some. I confess I am rather hoping for more than less...my theory is that if it's going to be cold there ought to be snow on the ground.
The plan for this afternoon is to go pick up the first parts of the Hot Rod to be. We are starting with the body - a 38 Chevy pick-up. I have no good idea of what it will look like when we are finished but am thinking the process will be fun. I know that I always enjoy looking at finished ones more when there are pictures of where and what it came from so pictures there will be and maybe eventually an album with the pictures in them.
Dipstick today is picking up marshmallows from the marshmallow wars that were had here last night...Stretch got to enjoy playing games with the adults. Squirrel wasn't feeling overly well so he spent the evening in bed sleeping...he's likely in the best shape today as far as sleep is concerned. We had friends over...Suz, C and their 4 kids as well as another family with a couple of boys. I got to hold a 3 week old baby for much of the evening...and Stretch got diaper changing experience. Overall we had a good evening. It was close to 2:00 am before B and I got to bed though.
Squirrel and Stretch are both looking forward to going back to school next week. There will continue to be adjustments for Squirrel as he will still have some doctors appointments to face and learning to watch people when they talk. He is still having issues with no hearing in his left ear...we are hoping that it will eventually return but don't know at all. Dipstick is not looking forward to returning to school quite as much...he would usually rather be out working in the shop than in class.
Speaking of working in the shop...B is now officially self-employed. He was called back to do 5 engines at his old place of employment with no guarantees as to how long he would be there before being laid off again. So he said thanks but no thanks. I am confident that his place here is the best for him but it's still scary at times. We will definitely be learning new things and relearning others...trusting God to provide.
On that note...I'm stopping for now...trying to get pictures to load onto the computer and will post goals for 2010 another time.
This morning we have snow coming down...counties directly west and north of us are expected to have 8-12 inches last I checked so we will certainly get some. I confess I am rather hoping for more than less...my theory is that if it's going to be cold there ought to be snow on the ground.
The plan for this afternoon is to go pick up the first parts of the Hot Rod to be. We are starting with the body - a 38 Chevy pick-up. I have no good idea of what it will look like when we are finished but am thinking the process will be fun. I know that I always enjoy looking at finished ones more when there are pictures of where and what it came from so pictures there will be and maybe eventually an album with the pictures in them.
Dipstick today is picking up marshmallows from the marshmallow wars that were had here last night...Stretch got to enjoy playing games with the adults. Squirrel wasn't feeling overly well so he spent the evening in bed sleeping...he's likely in the best shape today as far as sleep is concerned. We had friends over...Suz, C and their 4 kids as well as another family with a couple of boys. I got to hold a 3 week old baby for much of the evening...and Stretch got diaper changing experience. Overall we had a good evening. It was close to 2:00 am before B and I got to bed though.
Squirrel and Stretch are both looking forward to going back to school next week. There will continue to be adjustments for Squirrel as he will still have some doctors appointments to face and learning to watch people when they talk. He is still having issues with no hearing in his left ear...we are hoping that it will eventually return but don't know at all. Dipstick is not looking forward to returning to school quite as much...he would usually rather be out working in the shop than in class.
Speaking of working in the shop...B is now officially self-employed. He was called back to do 5 engines at his old place of employment with no guarantees as to how long he would be there before being laid off again. So he said thanks but no thanks. I am confident that his place here is the best for him but it's still scary at times. We will definitely be learning new things and relearning others...trusting God to provide.
On that note...I'm stopping for now...trying to get pictures to load onto the computer and will post goals for 2010 another time.
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