Family Night - Proclamation of the Family, assignments made, Apples to Apples.
Michelle had an amazing day she caught Math Fever and completed 17 lessons in her math book. She seems to have caught on to the concepts of multiplication and division. She also connected her round-off back handspring, back handspring. This was a tough thing for her - she had a fear of doing her back handspring and falling forward (over-turning). She tends to lean forward and apply her energy straight up rather than sitting back into it. She kept trying though and did well. B~ picked her up from gymnastics and was able to watch her for a minute.
Nicole was quite distracted, she did listen and read Matthew chapter 1 with us and listened to Farmer Boy and the story of Glass Mountain. Otherwise she scanned through books and played around. I did institute a fine of $5 mom's money each time she hopped on the furniture (I collected $10). It is impossible to keep her off of Tyler and Ellie both - she is always kissing them and trying to do things with them.
Spielberg "worked" on his science fair project on levers. He comes by his procrastination honestly, but it is still extremely frustrating. I read Shakespeare Stealer to him and checked our a copy of Gerald Lund's novel, The Alliance. He amazed me with the level of energy he has (Spielberg, that is). He started "Stick World" - a new comic today.
Tyler's tumor still seems smaller, but he is still having difficulty peeing and with his bowels - it's just not the right amounts. He is also constantly flinching tonight. I wonder if his blood pressure medication is affecting him that way. He is also very nauseous today - more than normal. Erin and Corinne came today.
Ellie has a new favorite activity, we have board books that have a bear, dog, or other item on each page and she loves to find each one. We do it again and again. She is communicating more and more.
I went to the library and checked out How Children Learn, The Virginian, Uncle Tom's Cabin, and Siblings Without Rivalry. The first three are for papers I'm writing, the last is to hopefully help with a few problems around here.
Sunday, May 1, 2011
Sunday, January 21, 2007
Two inches of snowfall. It is so cold outside that the snow is glittering in the sunlight. Nicole commented on how pretty it is. It love it when it coats the trees with a white blanket.
Tomorrow will have to be an insurance day. It is tough to keep up with everything.
Ty's tumor measured much smaller - I hope it stays that way, but it usually tends to grow a lot by Wednesday.
Spielberg and B~ attended a Youth Fireside tonight with a theme of "Let Virtue Garnish Thy Thoughts Unceasingly."
We read the Book of Mormon, Thumbelina, Fifty-five Fathers, and Shakespeare Stealer.
Ellie and Michelle were tough today. I think they have a bit of cabin fever. Can't wait until it's warm outside. Nicole is sick, and it looks like she has a sinus infection. Ellie had 3 diarrhea diapers today - she also had to regular stools and a few wet ones - I hope it clears up soon. My days have been reduced to writing about diarrhea, and her bottom is getting pretty sore.
I practiced hymns today. Some are even starting to sound like they're supposed to.
I am struggling with prayer right now, I want it to be more meaningful, more personal. I am trying to envision myself at Heavenly Father's feet - it is very difficult to feel worth enough to do that. I have so many shortcomings, and I am trying not to get bogged down by them. I am trying to to keep a prayer close to mind throughout the day. I am trying to remember to pray when I begin to get upset or when I forget that everyone is a child of God. I think my language has improved and for the most part, my patience - that last one might always be a struggle.
Time to read in Matthew.
Tomorrow will have to be an insurance day. It is tough to keep up with everything.
Ty's tumor measured much smaller - I hope it stays that way, but it usually tends to grow a lot by Wednesday.
Spielberg and B~ attended a Youth Fireside tonight with a theme of "Let Virtue Garnish Thy Thoughts Unceasingly."
We read the Book of Mormon, Thumbelina, Fifty-five Fathers, and Shakespeare Stealer.
Ellie and Michelle were tough today. I think they have a bit of cabin fever. Can't wait until it's warm outside. Nicole is sick, and it looks like she has a sinus infection. Ellie had 3 diarrhea diapers today - she also had to regular stools and a few wet ones - I hope it clears up soon. My days have been reduced to writing about diarrhea, and her bottom is getting pretty sore.
I practiced hymns today. Some are even starting to sound like they're supposed to.
I am struggling with prayer right now, I want it to be more meaningful, more personal. I am trying to envision myself at Heavenly Father's feet - it is very difficult to feel worth enough to do that. I have so many shortcomings, and I am trying not to get bogged down by them. I am trying to to keep a prayer close to mind throughout the day. I am trying to remember to pray when I begin to get upset or when I forget that everyone is a child of God. I think my language has improved and for the most part, my patience - that last one might always be a struggle.
Time to read in Matthew.
January 20, 2007
I watched Todd Skinner's "Beyond the Summit" DVD presentation today. It is an excellent presentation and reminded me of the attitude I would love to have in the face of adversity. One man on his climbing team, Jeff Bechtell. was supposed to only run base camp for them, but he became the man who did what was needed. He had never climbed a mountain before in his life and he started on this one - Trango Tower - the hardest, highest climb in the Himalayas. One day during a storm, he let out an anguished scream. The members of the team thought he had reached his breaking point and had "lost it".
He started saying - "I can't find our second stove I lost my left glove, my eyes are frozen shut.... and this is just, just, JUST how I like it!
That is who I want to be, able to embrace adversity and let it bring out the best in me to rise to meet the challenge and love the journey. It is not who I have been - a month ago I was a quivering mass of jelly. I let my mind think I couldn't handle life, that it was too hard to think of losing a child - it wasn't fair. I was completely focused on me--it wasn't right, it wasn't helpful.
I am trying to remind myself of the other quote by Todd Skinner - Carbon under pressure becomes either Coal Dust or Diamonds. We are each carbon under pressure and it is our decision whether we will let that pressure turn us to dust or create a beautiful diamond. Tyler is and always has been a diamond _ I aspire to his level of clarity and brilliance.
B~ and Spielberg attended a showing of "Mr. Dung Beetle" at an LDS film festival.
Michelle went with B~ and C~ to see B~'s sister compete at ballroom dance. She is now begging for lessons so she can dance with a boy.
Nicole is still undecided about which type of dance she would like to learn. I spoke with my sister Kelley and M S today. It's nice to be thought of and checked on. Finished Irene's story - must read! Piano, yay.
He started saying - "I can't find our second stove I lost my left glove, my eyes are frozen shut.... and this is just, just, JUST how I like it!
That is who I want to be, able to embrace adversity and let it bring out the best in me to rise to meet the challenge and love the journey. It is not who I have been - a month ago I was a quivering mass of jelly. I let my mind think I couldn't handle life, that it was too hard to think of losing a child - it wasn't fair. I was completely focused on me--it wasn't right, it wasn't helpful.
I am trying to remind myself of the other quote by Todd Skinner - Carbon under pressure becomes either Coal Dust or Diamonds. We are each carbon under pressure and it is our decision whether we will let that pressure turn us to dust or create a beautiful diamond. Tyler is and always has been a diamond _ I aspire to his level of clarity and brilliance.
B~ and Spielberg attended a showing of "Mr. Dung Beetle" at an LDS film festival.
Michelle went with B~ and C~ to see B~'s sister compete at ballroom dance. She is now begging for lessons so she can dance with a boy.
Nicole is still undecided about which type of dance she would like to learn. I spoke with my sister Kelley and M S today. It's nice to be thought of and checked on. Finished Irene's story - must read! Piano, yay.
January 19, 2007
Erin and Starla saw Tyler today. He is starting to get a reflex (to smile when you stroke his cheek) on his left side of his face that hasn't been there for so many years.
Ellie is still sick, but she is doing better and wanting to eat again.
Nicole played with Emma and Michelle practiced her gymnastics. Emma's mom is starting a dance group and the girls would like to join.
B~ and I attended a party held for his work. They had Frank Abignail speak to us. A movie and book were made of his life - "Catch Me If You Can". He was a criminal who forged checks from the time he was 16 until he was 21. He posed as an airline pilot, pediatrician and lawyer. He served time in French and Swedish prisons. He served four years in an American prison and when he had eight years left, the FBI said they would let him out if he would work for them until his time had been served. He did and stayed on 26 more years.
The whole point of his presentation and sharing his life story was to stress how each child has the right to a mommy and a daddy. His parents divorced when he was 16 and rather than choose between them, he ran away. He didn't see his mom again for 7 years and his dad died while Frank was in a foreign prison. He never had a regular adolescence. Divorce took it from him. He talked about the decay of society and the lack of ethics and character being taught by parents and schools. He talked about how his father was a "daddy" and that not all men are. His daddy would pull the blanket up on them and kiss their cheeks every night and then whisper, "I love you, I love you very much" into their ears every night. He never missed- even if they were already asleep when he got home.
I've nearly finished Irene Gut's book - an amazing woman!
Piano.
Ellie is still sick, but she is doing better and wanting to eat again.
Nicole played with Emma and Michelle practiced her gymnastics. Emma's mom is starting a dance group and the girls would like to join.
B~ and I attended a party held for his work. They had Frank Abignail speak to us. A movie and book were made of his life - "Catch Me If You Can". He was a criminal who forged checks from the time he was 16 until he was 21. He posed as an airline pilot, pediatrician and lawyer. He served time in French and Swedish prisons. He served four years in an American prison and when he had eight years left, the FBI said they would let him out if he would work for them until his time had been served. He did and stayed on 26 more years.
The whole point of his presentation and sharing his life story was to stress how each child has the right to a mommy and a daddy. His parents divorced when he was 16 and rather than choose between them, he ran away. He didn't see his mom again for 7 years and his dad died while Frank was in a foreign prison. He never had a regular adolescence. Divorce took it from him. He talked about the decay of society and the lack of ethics and character being taught by parents and schools. He talked about how his father was a "daddy" and that not all men are. His daddy would pull the blanket up on them and kiss their cheeks every night and then whisper, "I love you, I love you very much" into their ears every night. He never missed- even if they were already asleep when he got home.
I've nearly finished Irene Gut's book - an amazing woman!
Piano.
January 18, 2007
Kenna came and colored my hair today. No more gray, at least for a few weeks.
I took Ty's blood pressure and it was 127/100 - probably not a valid reading. When we took him into chemo it was 176/116 - dangerously high. We figured out that it might be a renal artery problem. When he has been sitting for an hour, the artery in his right kidney starts sending out signals that it isn't getting enough blood flow and so the heart must work harder. They have prescribed a drug that should block that signal. The main concern is that the left kidney might be having trouble too and really needs the increased blood supply. They will monitor him closely and we will be careful that his is not sitting for long periods of time - it's probably a wonder that he made it home alive after last week's chemo (2 1/2 hours in the car!) All his numbers look good. Dr. Randall's nurse contacted Dr. Chen's office and sent all the treatment notes over for review. They should be contacting us soon to schedule an appointment with her.
My TSH is .02 - definitely hyperthyroid and suppressed. The uncomfortable swelling in my neck has finally gone away. Next week I'll get my thyroglobulin results.
Ellie was not doing so well so when I got home at 6:30 from Ty's marathon chemotherapy day, I bundled her up and went to the doctor's office. She hasn't lost any weight, but she's only had two wet diapers today and two diarrhea ones - both required baths. The doctor said that if she has diarrhea longer than 10-14 days, they'll have to culture it.
I have been reading a very inspiring book about Irene Gut. She was an extraordinary ordinary woman who made a difference to several Jews in WWII. I don't think I can rightly complain about any circumstance I am in - I will always be more fortunate than the eastern europeans of the 1940s.
Read to kids, practiced piano. Changed a boatload of diapers!
I took Ty's blood pressure and it was 127/100 - probably not a valid reading. When we took him into chemo it was 176/116 - dangerously high. We figured out that it might be a renal artery problem. When he has been sitting for an hour, the artery in his right kidney starts sending out signals that it isn't getting enough blood flow and so the heart must work harder. They have prescribed a drug that should block that signal. The main concern is that the left kidney might be having trouble too and really needs the increased blood supply. They will monitor him closely and we will be careful that his is not sitting for long periods of time - it's probably a wonder that he made it home alive after last week's chemo (2 1/2 hours in the car!) All his numbers look good. Dr. Randall's nurse contacted Dr. Chen's office and sent all the treatment notes over for review. They should be contacting us soon to schedule an appointment with her.
My TSH is .02 - definitely hyperthyroid and suppressed. The uncomfortable swelling in my neck has finally gone away. Next week I'll get my thyroglobulin results.
Ellie was not doing so well so when I got home at 6:30 from Ty's marathon chemotherapy day, I bundled her up and went to the doctor's office. She hasn't lost any weight, but she's only had two wet diapers today and two diarrhea ones - both required baths. The doctor said that if she has diarrhea longer than 10-14 days, they'll have to culture it.
I have been reading a very inspiring book about Irene Gut. She was an extraordinary ordinary woman who made a difference to several Jews in WWII. I don't think I can rightly complain about any circumstance I am in - I will always be more fortunate than the eastern europeans of the 1940s.
Read to kids, practiced piano. Changed a boatload of diapers!
January 17, 2007
Here it is 2 AM. THe days are not long enough! I submitted two papers for my 5 Pillar Certification. I attended a four hour USOE meeting for the State deafblind Plan and found that they are sneaking past a definition on hearing loss that does not include functional hearing impairment.
It may be my imagination, but I think Ty's tumor is smaller. I hope I'm right. He's running a low-grade fever - 100.4, they told us not to worry unless it gets to 100.8 and stays there for over an hour or goes up to 101.3.
I went to Dr. M~, she wants to do an MRI to see if my lymph nodes are smaller and a high resolution ultrasound of my neck in July. I had my blood drawn and she's going to check my levels.
Nicole had gymnastics, Michelle played at Sydnee's and Spielberg went to scouts.
Ellie might be a bit dehydrated. She's still having diarrhea and not many wet diapers. Her skin looks fine and she doesn't have a fever. Hopefully she'll be better tomorrow.
We gave Ty a haircut tonight. Boy, did he protest. I'm glad he voices his opinion, but it sure is funny that he gets just as mad about getting his hair cut as he does about going to the doctor.
Cape on neck, tight
Mist on hair, wet
Buzz on neck, tickle
Comb in hair, prickle
Leave me alone,
Go away!
My hair looks fine,
let it grow!
I'm telling you:
NO HAIRCUT!
Can't you hear me?
****
Chemo day tomorrow
poor Ty
poor us
four wasted hours
killing time
not cancer cells....
if only
It may be my imagination, but I think Ty's tumor is smaller. I hope I'm right. He's running a low-grade fever - 100.4, they told us not to worry unless it gets to 100.8 and stays there for over an hour or goes up to 101.3.
I went to Dr. M~, she wants to do an MRI to see if my lymph nodes are smaller and a high resolution ultrasound of my neck in July. I had my blood drawn and she's going to check my levels.
Nicole had gymnastics, Michelle played at Sydnee's and Spielberg went to scouts.
Ellie might be a bit dehydrated. She's still having diarrhea and not many wet diapers. Her skin looks fine and she doesn't have a fever. Hopefully she'll be better tomorrow.
We gave Ty a haircut tonight. Boy, did he protest. I'm glad he voices his opinion, but it sure is funny that he gets just as mad about getting his hair cut as he does about going to the doctor.
Cape on neck, tight
Mist on hair, wet
Buzz on neck, tickle
Comb in hair, prickle
Leave me alone,
Go away!
My hair looks fine,
let it grow!
I'm telling you:
NO HAIRCUT!
Can't you hear me?
****
Chemo day tomorrow
poor Ty
poor us
four wasted hours
killing time
not cancer cells....
if only
January 16, 2007
Yesterday was fine - until I came home after Michelle's gymnastics. I was very frustrated with her being so downhearted and refusing to "go for it". Spielberg was being a tease and Nicole was being very cross and whiny. I snapped and yelled - a lot. Well, I shouldn't have at all. I was judging my kids and then judging my self-worth based on their actions. I must constantly remind myself that each person is a person - they have their own feelings and needs and they do not always coincide with my expectations, nor should they. I will not slip into deluded patterns from my past. I will love my kids and B~ and put it foremost. It truly is what is meant by losing yourself to find yourself. Remember, remember!
I read Little House - Farmer Boy to the girls after they did their math. B~ took Tyler to see Dr. Randall. He admitted to not really knowing what to do. He feels we should keep on the same course until the next scan on Feb. 8. In the meantime, his office is arranging for us to meet with Lei Chen, a desmoid tumor oncologist. We'll see what her impressions are - maybe we are just too impatient. I sure am.
I took Nicole, Michelle, and Spielberg to Purple Turtle to try Fish and Chips, and then to the library. I'm looking forward to reading about Irene Gut in "In My Hands". She helped feed Jews during the Holocaust with no thought for her personal safety.
I then took them to Target where we purchased a new leotard for Michelle. Spielberg was very patient and pretty well-behaved. I read three chapters to him from "Shakespeare Stealer". He is now interested in Hamlet. I think I'll read to him from "Tales Out of Shakespeare" - it is exciting to see sparks light in his mind.
Ty has started trying to through up whenever we go to the hospital. Ellie can now say "puppy" and find all the puppies in her book.
I read Little House - Farmer Boy to the girls after they did their math. B~ took Tyler to see Dr. Randall. He admitted to not really knowing what to do. He feels we should keep on the same course until the next scan on Feb. 8. In the meantime, his office is arranging for us to meet with Lei Chen, a desmoid tumor oncologist. We'll see what her impressions are - maybe we are just too impatient. I sure am.
I took Nicole, Michelle, and Spielberg to Purple Turtle to try Fish and Chips, and then to the library. I'm looking forward to reading about Irene Gut in "In My Hands". She helped feed Jews during the Holocaust with no thought for her personal safety.
I then took them to Target where we purchased a new leotard for Michelle. Spielberg was very patient and pretty well-behaved. I read three chapters to him from "Shakespeare Stealer". He is now interested in Hamlet. I think I'll read to him from "Tales Out of Shakespeare" - it is exciting to see sparks light in his mind.
Ty has started trying to through up whenever we go to the hospital. Ellie can now say "puppy" and find all the puppies in her book.
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