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!

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!

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.

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.

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!

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.