My sweet, sweet husband took 4 days off for our anversary and got babysitting and rented a bed and breakfast. What did I do for our anaversary? Got REALLY sick and had to cancel all of his plans.
I FEEL AWFUL.
Sunday, January 25, 2009
Tuesday, January 20, 2009
MRI
MRI did not go well (the meds made her combative), but they got the shots they need. I will let you know when we have the written results, should only be a couple of days.
~Heather
~Heather
Monday, January 19, 2009
Signing
Signing Time
Here is a great clip about a signing DVD set that T.O. suggested. Expencive little puppies. I don't know if we will be able to pull off buying very many. Well see.
Hope all is well with everyone,
Heather
Here is a great clip about a signing DVD set that T.O. suggested. Expencive little puppies. I don't know if we will be able to pull off buying very many. Well see.
Hope all is well with everyone,
Heather
Thursday, January 15, 2009
George's Episode Log...
Here is our first entry into George's Episode Log...
This log only lists the Episodes that are adult observed.
If anyone has any idea's feel free. I tried to grab the video camera but I was just a little late, the whole episode only took about a minute.
~H
George’s Episode Log
Episode #3, 1-15-09 7:00am:
Day prior to Episode: Low physical activities. High computer time. Spent a lot of time in his room. Did a lot of school work. Rode in the car for two hours in the morning. Drank two Ener-C packets. High fluids. Sick with loose stools, cough and snotty nose. No headaches, no stomach ache no fever.
First impression of Episode: Thought he was about to throw-up.
Observations During Episode: Rhythmic throat ‘gurgling’ and what sounded like failed attempts to swallow. Sounded worse than rattley. Like someone who was about to drown. He was awake enough to come to me and awake enough to follow instructions after hesitating. But still seemed out of it.
His lips were not equally shaped, like half of his lips were limp. (He says his left side.) Large amount of drooling with uncontrolled rhythmic chattering of the jaw, mouth area and throat.
Sounded like:
“humm, mum, mum, ma... humm, mum, mum, ma”
Repeated over and over. No body shaking. Inability to speak. Able to answer yes and no questions with nodding of the hand. The episode it's self took less then one minute.
He had a ‘waking’ moment, just a moment of clarity. Symptoms of gurgling and drooling stopped within five seconds of this ‘waking’ moment. Speech returned in 30 seconds slurred and within 3 minutes was fully restored.
After Episode: Woke up done for the day. Said there was no pain, no discomfort, no light sensitivity for his eyes. Had a dream but it wasn’t bad, although he couldn’t remember well enough to tell me what it was about. Fixated on the fact that there was daylight outside for over 30 minutes. He said that it is normally dark out and seemed distressed that it was daylight when he had an episode.
This log only lists the Episodes that are adult observed.
If anyone has any idea's feel free. I tried to grab the video camera but I was just a little late, the whole episode only took about a minute.
~H
George’s Episode Log
Episode #3, 1-15-09 7:00am:
Day prior to Episode: Low physical activities. High computer time. Spent a lot of time in his room. Did a lot of school work. Rode in the car for two hours in the morning. Drank two Ener-C packets. High fluids. Sick with loose stools, cough and snotty nose. No headaches, no stomach ache no fever.
First impression of Episode: Thought he was about to throw-up.
Observations During Episode: Rhythmic throat ‘gurgling’ and what sounded like failed attempts to swallow. Sounded worse than rattley. Like someone who was about to drown. He was awake enough to come to me and awake enough to follow instructions after hesitating. But still seemed out of it.
His lips were not equally shaped, like half of his lips were limp. (He says his left side.) Large amount of drooling with uncontrolled rhythmic chattering of the jaw, mouth area and throat.
Sounded like:
“humm, mum, mum, ma... humm, mum, mum, ma”
Repeated over and over. No body shaking. Inability to speak. Able to answer yes and no questions with nodding of the hand. The episode it's self took less then one minute.
He had a ‘waking’ moment, just a moment of clarity. Symptoms of gurgling and drooling stopped within five seconds of this ‘waking’ moment. Speech returned in 30 seconds slurred and within 3 minutes was fully restored.
After Episode: Woke up done for the day. Said there was no pain, no discomfort, no light sensitivity for his eyes. Had a dream but it wasn’t bad, although he couldn’t remember well enough to tell me what it was about. Fixated on the fact that there was daylight outside for over 30 minutes. He said that it is normally dark out and seemed distressed that it was daylight when he had an episode.
Tuesday, January 13, 2009
The season...
This is a season and I want to come out of the season,... Seasoned. Not wiped out.
Hmmm. Something to ponder. So my new start is:
Psalm 16:11
‘Thou wilt shew me the path of life: in thy presence [is] fulness of joy; at thy right hand [there are] pleasures for evermore.’
He is coming soon.
Hmmm. Something to ponder. So my new start is:
Psalm 16:11
‘Thou wilt shew me the path of life: in thy presence [is] fulness of joy; at thy right hand [there are] pleasures for evermore.’
He is coming soon.
MRI time...
Well, after much prodding (by my mommy), I have finally scheduled the MRI. It should be done (if no one gets sick) on the 20th...
I know, not very far away is it...
Not much time for mommy to prepare. Good news is it should, SHOULD be covered 100% by our insurance. Thank you Lord.
At the moment we are all sick. Not terribly, but sick none the less.
Despite this our therapists are not afraid of us. So I have our first new speech therapist coming tomorrow.
Side note. So far no more episodes with George since we moved him down to the floor. Don't know that it was the heat causing it but I am happy for now they have stopped. I don't think it is permanent though... Why not? Mommy intuition.
I know, not very far away is it...
Not much time for mommy to prepare. Good news is it should, SHOULD be covered 100% by our insurance. Thank you Lord.
At the moment we are all sick. Not terribly, but sick none the less.
Despite this our therapists are not afraid of us. So I have our first new speech therapist coming tomorrow.
Side note. So far no more episodes with George since we moved him down to the floor. Don't know that it was the heat causing it but I am happy for now they have stopped. I don't think it is permanent though... Why not? Mommy intuition.
Sunday, January 11, 2009
A video of Anna ~ I hope... 2 1/2 years old
I hope this will be a video of Anna. I tried really hard to pull it off of the Face book and get it here. I hope it workds.
Anyhow.... Here is a site I have found that has really helped us with the times tables... A little bit expencive, but I think well worth it. City Creek Times Tables
Lots of love, hope everyone is having a great day.
~Heather
Tuesday, January 6, 2009
Jonathan's 4th Birthday Party!
The photo Above (Head line photo) is also from today
These are kind-of in reverse order... Opps and oh well.
CHEESE!
HUH? WHAT ARE YOU TALKING ABOUT?
BLOW HARDER!!!
C.M. LOOKING...
GLOVE? I THOUGHT IT WAS A HAT!!!
HERE YOU GO PAPA! IT'S A HAT FOR SURE!!!
DON'T TOUCH YET!!!
J.M & BIRTHDAY BOY!!!
DUCK!!!!
THE BOYS AT THE PARTY!!!
MISS ANNA!!!
THE FAMILY!!!
These are kind-of in reverse order... Opps and oh well.
CHEESE!
HUH? WHAT ARE YOU TALKING ABOUT?
BLOW HARDER!!!
C.M. LOOKING...
GLOVE? I THOUGHT IT WAS A HAT!!!
HERE YOU GO PAPA! IT'S A HAT FOR SURE!!!
DON'T TOUCH YET!!!
J.M & BIRTHDAY BOY!!!
DUCK!!!!
THE BOYS AT THE PARTY!!!
MISS ANNA!!!
THE FAMILY!!!
Sunday, January 4, 2009
Marriage advice? From me?
Ok, I know that I am probably the last person that people want to take marriage advice from, due to the fact that I have one of the most unusual marriages, but hey, I thought I would still pass this on. I wrote this up for a friend and I decided I wanted to post if on my blog to for reference sake. Anyhow, hope everyone had a good day. ~Heather
1) On those rare occasions you can schedule a date, set them up two in a row. One date for the fighting, and one date for the kissing and making up. I have found that our dates are so infrequent cause there are few people willing to watch four children with disabilities, that we tend to work out everything that can't be said in front of kids, during our dates, and then are left frustrated about not having a date.
2) Find out what makes the other person feel loved. (Spencer feels loved when I wait on him hand and foot, I feel loved when he brings me gifts.)
3)Find out the other persons 'bare minimums'... Spence needs the floor clean. The rest of the house can be dirty but he need the floor cleaned, in order to not feel as overwhelmed.
4) Writing to each other. I have found if I write... A) I am not yelling B) I don't forget what I wanted to say C) If I say something I shouldn't I can erase it before I give it to him (or re-write it better) D) I can separate feelings from fact. Example: I FEEL like I need star bucks to survive. I NEED more sleep.
1) On those rare occasions you can schedule a date, set them up two in a row. One date for the fighting, and one date for the kissing and making up. I have found that our dates are so infrequent cause there are few people willing to watch four children with disabilities, that we tend to work out everything that can't be said in front of kids, during our dates, and then are left frustrated about not having a date.
2) Find out what makes the other person feel loved. (Spencer feels loved when I wait on him hand and foot, I feel loved when he brings me gifts.)
3)Find out the other persons 'bare minimums'... Spence needs the floor clean. The rest of the house can be dirty but he need the floor cleaned, in order to not feel as overwhelmed.
4) Writing to each other. I have found if I write... A) I am not yelling B) I don't forget what I wanted to say C) If I say something I shouldn't I can erase it before I give it to him (or re-write it better) D) I can separate feelings from fact. Example: I FEEL like I need star bucks to survive. I NEED more sleep.
Saturday, January 3, 2009
Medical update:
Here is the current medical update for all those who keep up with our MANY medical issues. Mom, if I have any of it wrong, feel free to add a comment with the corrections. J
Anna (2 1/2):
Saw the Neurologist yesterday. He said he is seeing "Global delays" that are significant. He is ordering a MRI to help us (as a diagnostic tool). We are thinking there may be another issue other then the Toxic Encephalopathy. Possibly stroke, seizure, CP, or other disorder. He is also going to do some blood work and check for some "markers" that might indicate what else is going on. (Like Anglemen’s or some such)
Currently she is able to say two words completely and correctly, Yes & mommy. (She is 2 and 1/2 years old). She is saying probably 10-20 other words that we can "sometimes" understand. She is able to sign aproximatly 60 words. She understands about 90% or more of what we say to her.
She appears to have difficulty manipulating the right side of her body. She is slightly turning her right foot out and chooses to avoid using her right hand.
She is still in all kinds of therapies and will be re-starting speech therapy hopefully sometime in January.
George (7):
My one baby, who doesn't have very many medical issues, has started having episodes at night. Unknown cause. He is waking up shaking and unable to form words even though he is awake and able to nod yes and no. We are thinking possible night terrors or other sleep disorder, or seizures that only happen at night. The neurologist very kindly consulted with us yesterday to determine the he needs to be seen and needs a sleep study.
In the mean time he wants us to try a mild sleep aid to see if the episodes are sleep disorders. The mom in me is trying hard not to panic.
Jonathan (almost4):
Has been doing way better as far as behavioral issues. He does appear to have almost constant muscle spasms in his legs. He is constantly on the go. VERY, VERY active. His nails wear off before I ever have to cut them. We have been giving him calcium to help him with his iron absorption; it also has a calming effect. We have been rubbing lotion into his legs for his dry skin and muscle spasms.
These past two weeks we have seen a lot more ‘attitude’ issues. I am hoping we don’t see a return to behavioral issues.
Andrew (almost 9):
Not much of an update. He still shows signs of learning disorders or autism spectrum. Still not diagnosed. Has not been much of an issue since he is homeschooled. He is doing better than expected in the young marines. So far he has been able to keep up with the group.
Spencer (37) :
His first eye surgery resulted in one eye being 20/15 and one eye being 20/30. He has now had the second surgery. We are still waiting to see if the eye will respond.
Ok, I think that is everyone’s most updated medical info.
Todays up date is that I have invites all over the place. However, I stayed up until two in the morning, so I don't think I am doing anything today. J.M. and I went to Barnes in noble and had coffee and cheese cake and talked for two hours. Then we went and saw a movie. Then I drove her home. By the time I got back it was two in the morning. So, I am kinda toast. I don't know, maybe I will find some energy to do something, but I think even if I do, I am going to do some homework. Scratch that. I am going to do some house work... :-). Man I am tired.
I have more christmas pictures from the in-law christmas. I haven't really even looked at them. I will try and post some later today.
Talk to ya'll later.
~Heather
Anna (2 1/2):
Saw the Neurologist yesterday. He said he is seeing "Global delays" that are significant. He is ordering a MRI to help us (as a diagnostic tool). We are thinking there may be another issue other then the Toxic Encephalopathy. Possibly stroke, seizure, CP, or other disorder. He is also going to do some blood work and check for some "markers" that might indicate what else is going on. (Like Anglemen’s or some such)
Currently she is able to say two words completely and correctly, Yes & mommy. (She is 2 and 1/2 years old). She is saying probably 10-20 other words that we can "sometimes" understand. She is able to sign aproximatly 60 words. She understands about 90% or more of what we say to her.
She appears to have difficulty manipulating the right side of her body. She is slightly turning her right foot out and chooses to avoid using her right hand.
She is still in all kinds of therapies and will be re-starting speech therapy hopefully sometime in January.
George (7):
My one baby, who doesn't have very many medical issues, has started having episodes at night. Unknown cause. He is waking up shaking and unable to form words even though he is awake and able to nod yes and no. We are thinking possible night terrors or other sleep disorder, or seizures that only happen at night. The neurologist very kindly consulted with us yesterday to determine the he needs to be seen and needs a sleep study.
In the mean time he wants us to try a mild sleep aid to see if the episodes are sleep disorders. The mom in me is trying hard not to panic.
Jonathan (almost4):
Has been doing way better as far as behavioral issues. He does appear to have almost constant muscle spasms in his legs. He is constantly on the go. VERY, VERY active. His nails wear off before I ever have to cut them. We have been giving him calcium to help him with his iron absorption; it also has a calming effect. We have been rubbing lotion into his legs for his dry skin and muscle spasms.
These past two weeks we have seen a lot more ‘attitude’ issues. I am hoping we don’t see a return to behavioral issues.
Andrew (almost 9):
Not much of an update. He still shows signs of learning disorders or autism spectrum. Still not diagnosed. Has not been much of an issue since he is homeschooled. He is doing better than expected in the young marines. So far he has been able to keep up with the group.
Spencer (37) :
His first eye surgery resulted in one eye being 20/15 and one eye being 20/30. He has now had the second surgery. We are still waiting to see if the eye will respond.
Ok, I think that is everyone’s most updated medical info.
Todays up date is that I have invites all over the place. However, I stayed up until two in the morning, so I don't think I am doing anything today. J.M. and I went to Barnes in noble and had coffee and cheese cake and talked for two hours. Then we went and saw a movie. Then I drove her home. By the time I got back it was two in the morning. So, I am kinda toast. I don't know, maybe I will find some energy to do something, but I think even if I do, I am going to do some homework. Scratch that. I am going to do some house work... :-). Man I am tired.
I have more christmas pictures from the in-law christmas. I haven't really even looked at them. I will try and post some later today.
Talk to ya'll later.
~Heather
Thursday, January 1, 2009
Hi guys, I am back.
Well, that went way better and way worse then I expected.
In other words, could have been better, could have been worse.
I am back, I think I am all in one piece but I am still taking inventory so I will have to get back to you on that.
Tomorrow is Neurologist for Anna, so the fun never ends.
George had an episode the other night. We are still trying to figure out what it was. I don't know if it was seizure or night terror or what. So I may find out about getting George seen while we are there.
I really needed a down day but this seems to be important so, I don't know when I will have my down day.
Talk soon,
Heather
In other words, could have been better, could have been worse.
I am back, I think I am all in one piece but I am still taking inventory so I will have to get back to you on that.
Tomorrow is Neurologist for Anna, so the fun never ends.
George had an episode the other night. We are still trying to figure out what it was. I don't know if it was seizure or night terror or what. So I may find out about getting George seen while we are there.
I really needed a down day but this seems to be important so, I don't know when I will have my down day.
Talk soon,
Heather
Subscribe to:
Posts (Atom)
