Tuesday, December 27, 2011

 Christmas 2011 was great.
 Tyler got these Kre-o blocks (lego wannabe's) and Heidi ended up assembling most of the piece.

 Kira accessorizing her dollies

 Sometimes Scott is so endearing as an older brother.  Here, he is showing Kira how to assemble her dollies.

 The kiddos working on their Christmas projects.  You can't tell, but E-maxx is on the table and I was replacing the chassis, skid plate, steering turnbuckles and posts.  


 Scott got a huge lot of hot wheels track from craigslist and I showed him what my cousins and I used to do.  We used to hang out at Grandpa McMillan's on conference Saturday and run the cars down the stairs.  The best was the bus, because it could launch all the way to the fireplace.

 I'm proud of Scott's piano progress.

 Kira has been talking a lot lately.  And we can understand her.  Today, she asked for "leche."  Yessss!

Tyler got a razor from Craigslist and he's stoked!  Also, he's off the binky and his open bite is already beginning to close.

Heidi and I got this dope brass piano lamp from craigslist.  It's super heavy--probably from the 1960's, back when "Made in America" meant something.

I am happy to be able to walk on my own two feet without my cane.  Today I didn't have much back pain and I was able to enjoy my day at work.  My legs are getting stronger and I can maintain higher speeds on my bicycle.  The kids were extra fussy today, though.  Heidi had a doctor's appointment and I guess it was pretty stressful because of the kids' attitudes.  So for FHE, we had a lesson on respect.  I spoke to the kids in English (I thought of Ben Wiederhold and his lessons) and said, "I am not too stoked about your whining.  We ask you to do things and you whine or cry.  We are trying to raise you to be responsible people.  When you're older and you have a job, if your boss asks you to do something and you whine, you'll get fired.  I'm also not happy about how you have been treating Mommy.  You need to be respectful of adults.  I don't give you everything you want because everything you want is not always good for you.  I don't let you drink soda all day because you'll rot your teeth.

Tyler said, "I want soda."

"No."

He persists:  "Sodaaaaaaaaa."

"Tyler, I said no, and if you ask again, you're going right to bed."

Then Tyler says, a little more quietly, "soda."

So I took him to bed.  Looks like he didn't learn anything from my spiel.

Back in the day, I thought I gave a pretty effective speech to the freshmen academy chem 105 class in college.  They had done poorly on their test because they had stayed up until 3:00 most nights and were sleeping through my class.  I said, "How many of you are less than happy about your grades?"

Most of the hands went up.

"Why do you think this is?  Am I not teaching you the right material?"

One of the brighter students, but who also had a talking problem, said, "It's because we're not listening to you."

"Yes, that's right.  Some of you think you're smarter than I am.  Some of you probably are.  That doesn't give you any reason to talk when I'm talking.  It is disrespectful and prevents others from learning."

Then, during my speech, students were talking!  Good grief!  I started talking really loudly to drown them out.  One of the students said, "Why are you yelling?"

Freshmen.

So here I am, trying to give my kids lessons on how to succeed, and they're not listening.  I was a great parent until I had kids, and I was mostly prepared for kids pushing my buttons, but I was a little disheartened that my speech had no immediate effects.

Eh, whatever.  Night night.

Tuesday, December 20, 2011

Some 50 mm lens pictures


Kira looking cute in her Christmas dress



 Mr. T showing us his open bite.  Heidi decided it was time to give up the binky.

 Scott at his first piano recital at Eskaton lodge.  He played Jolly Old St. Nicholas and We Three Kings. I was pleased. 

His piano teacher, Trish

Heidi making friends with the residents


 Classic Tyler.  You better watch out, man, a bird's gonna land on that lower lip!


A vid of half of Scott's performance
video



Tuesday, December 13, 2011

I'm free!

I got my post-op x-ray yesterday, after 10.5 weeks of recovery.  I have been using a cane and I felt good about my progress, so I was pretty confident the x-ray would look good.  Since I read x-rays, I asked to see my own.  The tech refused, and I was like, "I gotta see it."  Finally, she relented and I had a look.  I said, "See?  No evidence of heterotopic ossification.  It looks good." 

So I emailed my doctor, and I almost told him what my findings were.  But I just said that I was pleased.  He concurred.  So I am free to do full weight-bearing!  Yesssssss!  Eh, I pretty much already knew that.  I'm still a little wobbly, so I might use the cane here and there.  When I ride my bike, though, the leg feels good.  Solid. 

Friday, December 9, 2011

Six minutes

Upon cleaning the van with Heidi, Scott and Kira:

Tyler:  Daddy, can I come inside?  Because the garage is really freaking me out.
Me:  Oh?
Tyler:  Yeah.  It's freaking me out.  So can I come inside a little bit, for six minutes?
Me:  Yes, sir.

Monday, December 5, 2011

Suzuki


Scott has been taking piano lessons for a few months and is doing quite well.  My mom brought me the old Suzuki books from which I studied as a youth, and today, Scott had his first Suzuki lesson with me.  We did "Pepperoni Pizza," as I remember Rick teaching me 28 years ago.  Scott did well and I was pleased.  When we were done, he said with a scowl, "Now can I play with your iPhone?"



Sunday, November 20, 2011

This week

Tyler was in the hospital from Sunday to Tuesday night.  The surgery was supposed to be on Friday, but they moved it to Wednesday.  He was on milrinone to give his heart a little rest prior to surgery.  The good news was his echo looked much better this stay than in August when they cancelled his surgery due to his heart function.  So Tony was really pleased with how his increase in meds helped his heart over the past couple of months.

Tyler did pretty good.  His IV's kept failing which was a pain.  I was not on my A game during his first IV attempt when I let two different people poke him before asking for the best.  The resident told me she was confident in herself and would try one more time.  I politely said that I believed her but wanted to know who the best was.  Luckily the charge nurse came in who I LOVE, heard our conversation and immediately got an attending cardiologist and anesthesiologist. They reminded me this was a training hospital and I needed to be firm. My only job in the hospital is to keep Tyler happy so I did a better job throughout our stay with that.

The best part of the stay was ice-cream and chicken nuggets for breakfast, lunch and dinner.  The first two days we couldn't go to the playroom because he was on ICU status.  It got much better when he went from the intensivist/cardiologist care to just cardiologist care.

I met with the surgeon around 5pm, one last pre-op set of labs were taken at 6:30 and suddenly around 30 minutes later a surgeon came came to tell us something came up with Tony, the lead surgeon and his surgery was cancelled. They felt really bad and we were home by 9pm.

So for now we just wait to hear from UCSF.  We were hoping to be out of the hospital by Christmas so we could go to Utah but now we will have to stay.  We know that the Lord is over this whole plan and have faith that everything will happen in his timing.  Until then, we will really enjoy the time we have with Tyler and our family.

Grammy came out from Utah for the second time to help with the kids during surgery.  While it was an inconvenience for everyone, we made the most of it and all had fun playing with Grammy for the rest of the week. So instead of surgery we went bowling.









Wednesday, November 16, 2011

Tuesday, November 15, 2011

Not again

I was all ready for Tyler's surgery tomorrow.  Then Heidi called to say that something came up in the surgeon's life and he couldn't do the surgery.  So the surgery is canceled.  Weh.  Bah.  Phooey.  Daaaaaaaa!  Heidi and Tyler are on their way home.  I am quite disappointed because last time we were all ready, they postponed it.  There have to be good explanations and reasons for all of this but hearing this news agitated me.

I feel like standing up on a soapbox and ranting, but I'm in healthcare too and I don't have all the answers anyway.  I just feel like we're getting a big run-around that's becoming inconvenient.  But I am glad to see Heidi and Tyler again.  Since I can't ride my motorcycle to UCSF, getting out there is a timely deal.  I actually considered getting a collapsible cane, putting it in my backpack and riding the VFR to UCSF.

What would my orthopedic surgeon say?  He'd say no.  Then I'd ask, "What would you do if your kid were in the hospital?"  I'm pretty sure he'd say, "I'd do what I wanted."  Right.  Still, my muscles are weak.  I have had a lot on my mind and I feel like Heidi, the kids and I have done a good job of managing, but now I am unraveling.  Okay.  That's all for now.  Daaaaaaaaa, I could yell!

Surgery is tomorrow

Yes, they have moved Tyler's Fontan from Friday to Wednesday.  I'm glad about this because that means two more days for him to recover before Christmas.  Heck, he may be feeling good for Thanksgiving!  Eh, we'll see. 

Monday, November 14, 2011

Milrinone underway

Tyler, Heidi and I went to UCSF Sunday afternoon.  We got a suite in 7 East, like old times, and a lot of things had changed.  First, they don't let you ride the regular elevators to the 6th or 7th floors.  They don't let you use the stairs, either.  Second, there were many different pieces of equipment and color schemes.  I was fascinated by the vein finder, which I discovered, upon scrutiny, was a broad band laser.  It adequately showed the veins in Tyler's hand, but the people still struggled to get a valid IV and had to do five attempts.

Poor Tyler was screaming, "I don't want a shot!  Take it out!  I WANNA GO HOME!"  Eventually he calmed down and the milrinone began pumping.  He watched some DVD's and then it was time for bed. 

Saturday, November 12, 2011

Tyler's Heart


Tyler goes to UCSF tomorrow for a second attempt at the Fontan.  He will be placed on Milrinone and have the Fontan on Friday.  Pray for our little man.

33

Happy Birthday to my wonderful husband and best friend Danny.  Danny worked the entire day at UOP on the day of his birthday.  Before you feel bad, he was so excited to finally be able to work a whole day after surgery. Perhaps the best present is to be back to work. His colleagues brought him out to lunch and he said he had a GREAT day.

The following day, we opened presents and had some friends over to surprise Danny.  He was surprised and we had a great time with new friends from Brentwood and old friends from Walnut Creek.  One of my best friends recently moved to Sacramento and she was able to come with her adorable family which was so much fun!

33 has been a great year for Danny full of good changes.  Top 5 blessings of the year:

1. Work.  Danny continues to love being a dentist and teaching at the school.  When you are first married you just want any job.  As you mature as a couple you want nothing more for your spouse to find a love and fulfillment in what they do each day.  None of the money in the world can buy that and I feel so blessed that Danny has saught a profession that he loves. One of the greatest blessings in our lives.  He is working at an office that he loves and that loves him.  Yeah for Danny!

2.  Brentwood.  We moved to a community that we love.  We miss being close to our Walnut Creek friends. We had some great friends.  But this is right for our family.  Scott loves his school.  There are tons of kids and Danny has a 5 minute bike ride to work.

3. A new Hip.  So blessed that Danny will not have to live in pain the rest of his life.  Blessed for the doctors that worked so hard to help Danny.  Blessed that we could afford for him to stop work and pay for the medical bills for him to have surgery.   Hopefully next year he will be able to walk to work if he wants (which he won't but at least it can be an option).

4. Family. Our kids make us laugh every day.  It is so neat to see them achieve new things.  Every morning, the kids go into the driveway waving bye to Danny and blowing kisses.  Nothing compares.  We also have a great family in Walnut Creek and UT.  Not to mention ward family.

5. Life actually gets better with every passing year.  Our bodies might not agree, but our love for each other, life and the Lord increases and adds excitement for the adventures of the upcoming year.

Happy Birthday Danny!  I love you!  You truly are the best husband and dad.  I couldn't be any luckier!

A nephew and a niece

We had a nephew and niece born September 20th who are both so cute!  Danny's sister, Michelle, had an adorable little boy, Brockton, who is a true Olson...just as cute as big sis and bro.  David, Danny's brother and his wife Juliann, adopted a precious little girl, Clarissa.  David and Juliann have been waiting for years to welcome a little baby into their lives and we are thrilled for their dream to become a reality.  Clarissa is a true testament of the power of miracles and miracle of adoption.  I was excited when Juliann told me she was going to post about her precious girl on her blog so I could share this wonderful news.  Thank you to all who have prayed for David and Juliann during this journey.  Brockton and Clarissa are precious and we can't wait to make it to Utah as soon as our lives calm down to snuggle (Heidi) or throw in the air (Danny) these little ones.


Monday, November 7, 2011

Mi Pueblo

Heidi, Kira, and I went to Mi Pueblo in Pittsburg for dinner since Grandma had the boys.  I drove the swagger wagon for the first time since my surgery and it was great being behind the wheel again.  Good old swagger wagon.

At Mi Pueblo, we ordered some tacos al pastor and some tacos con carne asada, as well as a burrito with carne al pastor.  It was the best burrito we had ever had.  Mmmm, Mi Pueblo.  The next day, I tried to make some carne al pastor and it wasn't the same.  My beans were still good, though.  I'm also into making my own tortillas and Scott helped roll them out.  It took about twice as long, but I'm glad he's into doing things himself.

Saturday, November 5, 2011

The spanish experiment

Me:  Kira, me das ese toalla? (Will you give me that towel?)
She gives me the towel.
Me:  Gracias.  Sabes que significa eso?  (Thank you.  Do you know what that means?)
Kira:  Thank you.

The spanish experiment is working!

Wednesday, November 2, 2011

Silver Tongue

Tyler:  Mommy, my tummy hurts.
Mommy:  Oh, then no candy today.
Tyler:  My tummy doesn't hurt anymore.
[laughter]
Tyler:  Stop it!  I'm not your friend anymore!

Wednesday, October 26, 2011

A change

Tyler has had a change of attitude.  Previously, he would wake up with a scowl and growl, "Where's my iPhone?"  And he would complain, whine, and scream all day, despite having the iphone. About three days ago, he suddenly turned into a sweet, charming young man.  We are unsure of the reasons behind the change but are really enjoying them.  This morning, he bathed with Kira.  He said, "Kira went poopy in my bed."

"Oh really?"

"Yes, a big dump."  That's my boy.
 A cupcake Tyler decorated at Erin's birthday party

 Kira at Scott's soccer game

Scott scored a goal and this was the first soccer game I went to.  
  
How am I doing?  All things considered--specifically, my left PAO--I am well.  Still, I have a lot of pain down to my kneecap in the form of paresthesia.  Why don't I take pain meds?  Because they were making me psycho:  aggression, anxiety, and nightmares.  So I don't take anything.  Also, the circulation is poor so when I stand up, all the blood goes down to my foot and stays there.  The extra pressure is uncomfortable. And my right leg is always cold as a result of the poor circulation.  

I also have to fight depression because I'm used to being able to do anything.  You know, you just wake up, stand up on your own two feet, and start being productive.  I can't do anything without my crutches, and I've learned how to hold things in both hands and negotiate the crutches, but it's still hard.  My left leg is weaker after the PAO and balancing on it isn't that easy.  

I'm still grateful to have the challenges we have.  Some people hate their jobs.  Some don't have jobs but want them.  Some hate their spouses.  All other aspects of my life are good.  It seems we have had to pay a lot of dues to the medical community, and that's fine.

We are grateful to those who have helped us:  meals, childcare, lawn services, and visits.  Thank you!



Thursday, October 20, 2011

Cute Pic With Pop


I have been asked what these are.  They are called Skippy Pets brought to you by a nice man named Skip.  My sister got 6 of them for Paisley's birthday and they were sooo much fun.  They are motorized animals that sing while you ride.  They go forward, back, around and around.  I need a couple of these for my backyard!

Monday, October 17, 2011

Needing a Village

Danny is doing awesome!  He might not totally agree with that statement as he can't walk, but all in all, is doing great!

Today we dropped off Scott and headed to the store, library and post office.  He survived it!  Amazing!  He is totally off his pain meds.  It will not surprise his surgeon since he thinks Danny is a little crazy and has a high pain threshold after his last surgery.  I will never forget when Danny was cleared to do whatever with his hip, he decided to ride his bicycle to his first therapy appt.  I think the therapist only had him come in 1 more time.

As for the rest of us.  We need to take lessons from Danny.  I thought Kira was teething all last week.  She had a little fever and diarrhea but worst of all would wake up and be in pain.  Not just a little, but a lot.  Like not allow you to hold her, throw her tiny body on the floor and roll around screaming.   It was hard.  I realized how lucky we have been with her.  When she is not herself for a week I went crazy.  I become an emotional, tired, impatient person.  I didn't know if she was sick or becoming a difficult child overnight.

Thankfully, she started feeling better. Tyler came down with a high fever and diarrhea which actually made me relieved that Kira was indeed sick.  Stopped his lasix and took it easy.  Tyler did nothing for two days.  I got a much milder case.  Ears and throat hurt and had a constant stomach ache.  Luckily Scott and Danny got very few symptoms.  


So this is the best part of the story.  When I was tired and needed a break, that is exactly what I got!!  All weekend friends helped.  Brought our kids to park and brought us dinner.  I used to have a really hard time accepting help and now I try to embrace it.  I realize I can't do this alone nor should I.  Having a sick child forces you to learn this lesson. The best part of having others help you is that your love for these friends grows and desire to do service in the future increases. 

It truly takes a village to raise a family and I feel blessed for the wonderful village that the Lord has and continues to bless our family with!   

If you can't beat 'em, join 'em

I was a great parent until I had kids.  I fought and fought to keep the kids well-rounded instead of glued to their media devices.  For a while, it was the Nintendo DS.  Well, we solved that by giving them back to grandma.  Now the boys are addicted to the iphones.  I can't really entertain them with my physical limitations, so I just give the iphones to the boys to keep them occupied so I can have some peace and quiet.  Except that it's not quiet.  They turn up the volume all the way on these obnoxious games.

Then I gave Tyler some headphones.  It was nice for about two minutes, but Tyler didn't hold out.  I said, "Either you wear your headphones or you go to another room."  That worked and I was able to take a nap.

Saturday, October 15, 2011

I'll give you candy

Tyler:  Daddy, can you download me a new game on your iphone?
Me:  No, you have enough.
Tyler:  I'll give you candy!
Me:  Really?
Tyler:  Yes, I'll give you chocolate chips!
Me:  Okay, go get them.

Then he got distracted and then it was time for the bath.  No chocolate chips for me.

Friday, October 14, 2011

Clayton Valley Pumpkin Patch


When Danny and I were in the hospital, my parents took the boys to the pumpkin patch.  From the looks of it they had a lot of fun!











Tuesday, October 11, 2011

Grandma Needs Prayers

My mom got diagnosed with chronic lymphocytic leukemia (CLL) 4 years ago.  The week Tyler was born.  She has done really well and been more or less asystematic with occasional shingles and such from a weak immune system. She was able to live a relatively normal life.  

About two months ago she had horrible back pain and was diagnosed with a herniated disc which has improved with time. And two weeks ago she started having double vision.  After seeing specialists, they decided to do a spinal tap to see  if her leukemia was present in the cerebrospinal fluid.  It was present  which is pretty rare and doesn't have a great prognosis without treatment.  So tomorrow my mom will be going into surgery to get a permanent catheter placed in a canal in her brain to start chemo on Monday.  

This internet describes it better: 

People who have leukemia in their cerebrospinal fluid, or who are at high risk of having leukemic cells migrate to the spinal fluid, receive chemotherapy directly into the cerebrospinal canal. This is known as intrathecal chemotherapy

  • Intrathecal chemotherapy is necessary because drugs given via IV do not sufficiently penetrate into the cerebrospinal fluid or brain and, thus, cannot kill leukemia cells there. Insufficient penetration of drugs into the cerebrospinal fluid results in uncontrolled growth of leukemic cells in the cerebrospinal fluid. Sometimes the therapy is inserted into a sac placed in one of the larger fluid-filled areas of the brain, a ventricle. The sac is known as an Ommaya reservoir, so named after its developer. 


So keep her in your prayers.  She is having a pretty hard time with all of this, as most of us would.  There are not many cases detected where CLL is found in the CSF.  With that said, the majority of CLL patients that have an autopsy do indeed have CLL present in their spinal fluid.  So maybe it was a blessing in disguise that her eye was attacked and they detected the cancer in her CNS.  I believe this cancer responds well to chemo and most patients go into remission.  Doctors also told her that this type of chemo doesn't have the horrible side effects of other chemo drugs. She will be receiving chemo twice a week and we are hoping she is able to live a pretty normal life during the treatment.  

We will keep you updated and in the meantime pray that she will respond to treatment and stay optimistic through it all.


  

Paisley Turns 1

My sister's beautiful daughter, Paisley, turned 1 this weekend and we had a great time celebrating.  My sister threw a very special birthday party at my parents.  She is beautiful and we love her so much!!  Happy Birthday Paisley!  Grandma and Pop of course threw the best party followed by a second party that night for the Porshe club.