Geeze Oh Pete

On a positive note, Mommy here is feeling much better.  Not 100% but I’ll say at least 75% of norm.  This is a good thing.  And yet, we were back at the Doctors office on a Saturday morning. A big Thank you to all those who have sent me loving emails and offers to keep the children if we weren’t separated by hundreds of miles!

During Ballet class yesterday afternoon, I noticed that K3 just wasn’t with it.  She didn’t dance or do much of anything.  Normally she is at least monkeying around during class.  By the time her class was over and K2 was starting, I noticed rosy cheeks and yep… the fever was back.  I decided it was time to visit the Doctor.  Evidently, K3 has developed pneumonia and a double ear infection.  Woot!

Needless to say the sickie kidlets will not be going to church with us here in a few minutes… TeenGirl is going to have to stay behind with them.  I can’t stomach the thought of them spewing virus laden droplets all over their respective classes.  Mommy must attend since I have hospitality duties.  (Is this a reprieve or just a chance for me to feel guilty for leaving the sick kids home without me?)

Green Tip of the Day- Use less water: wash only full loads of laundry and dishes, use the cold was cycle, turn off the extra rinse cycle and heated dry cycles.  Shorten your showers (or better yet, share them!).  This is a no-brainer, but one we often fall off the bandwagon with!

 

Good Bye Faithful Friend

Dakota November 18, 1993-April 4, 2008

 

 

To Asia He Goes

Hubby has a nearly 3 week long business trip to Asia coming up in a couple of weeks.  I might lose my mind.  In fact, its very likely that I will lose my mind. 

 Let’s ponder for a moment. 

Hubby flies to San Francisco, then to Taipei where he hangs out for about a week, then boards another plane to Jakarta where he will spend another week or so.  And if he is SUPER lucky, he will proceed to Hong Kong.   Over the weekend he plans to escape to the white beaches of Bali.  I am so jealous.

That said… I will be home BY MYSELF with FIVE kids, a dog and a crazy little kitty.  Lets remind ourselves that I leave for work at 4 am and Hubby gets the crew off to school and daycare in the morning.  Just how am I going to manage that?

We’ve done these trips before… a couple times a year to be exact and THEY KILL ME EVERYTIME.  This is the first time I have worked this schedule and had out of home childcare to deal with.  The last time he wandered off leaving me a single Mom for weeks I had the Mother-in-law coming over to help with the kids and watch the youngest ones while I worked. 

Now I have to juggle getting critter to daycare… that doesn’t open until 6 am, getting everyone else on the bus at 7:30am and still working my 5am-2pm schedule.  Hmmmm.

I really need to get this working from home gig going ASAP.

 

Looks Like Lupus

TeenGirl became seriously and mysteriously ill over the summer.  She has spent about 8 weeks as an inpatient at Doernbecher Children’s Hospital since July 5, 2007.

The reason, you ask?  Wish we knew. 

There have been many theories.  The first was TSS (Toxic Shock Syndrome).  Not so strange for a 14 year old girl.  Not so scary either… we thought, if that’s it, give her some medicine and get her home.  It wasn’t TSS.  That would have been too simple.

TeenGirl has an entire team of Medical Professionals stumped.  No one can figure out what is wrong with her.  She looks auto-immune, but she doesn’t test positive.  Interesting.

Symptoms?  Lots of ‘em.

Headaches which occurred with more frequency over a couple of months, irregular (and close together) menses, lethargy, sinus congestion, generalized depression/ neuological decline, fevers, elevated white blood cell count, severe anemia, fainting spells.  Later on she developed a rash over her entire body- a skin biopsy didn’t show anything abnormal. 

On her first admittance to the hospital, she was given 5 units of blood products to counter-act the anemia, by now she has had so many units of blood products, I have lost count. She had kidney failure which took weeks to correct.   There have been specialists of every kind involved in her care, tests on her blood, biopsies of her bone marrow, kidneys and skin, a spinal tap.  You name it, she was tested for it.  Cancer, although an intial concern, was ruled out early on.  She didn’t “present” like a kid with Cancer.  I had to laugh at that… evidently, she didn’t “present” like anything.   Now, 5 months after her initial hospilization, she is out of immediate danger, but we still have NO answers.  What caused this to begin with?  How will we stop it?  She is currently having APHERESIS (a treatment that replaces the plasma in her blood with donor plasma) and taking some many medications it makes our heads spin.  The most recent medication addition is CellCept.  She is also on steroids which has caused ugly fat deposits all over her face and upper back, they also make her cheeks permanently pink and often leave her feeling ill.  I have days when I wonder if the medications aren’t keeping her sick!  Maybe we should stop them all and see how she does before we go onto a new, more aggressive treatment.  (Now they are talking about a Chemotherapy often used for Lupus patients).  The Doctors are sure she has Lupus, and will one day test positive for it.  

TeenGirl started her freshman year in High School in September.  She misses more school than she is there for.  Lucky for us, she is on a medical 504 which allows her to take half her classes online and doesn’t hold her absences against her.   We make the 1 hour drive each way to the Children’s Hospital at least once a week, although it’s often 3 times in one week.   Now, we are beyond searching for an answer.  Maybe we won’t ever know what disease this is.  As long as its under control, I can accept that.  Really.  I can.

 

ALS

My Mom, Cheryl, was diagnosed with ALS (Lou Gehrig’s Disease) in September of ‘06.  We knew it was ALS before the Doctors did.

Moms early symptoms weren’t ones we even connected to the disease until much later.  She thought it was allergies or asthma.  Just some relatively minor breathing/wheezing issues that cropped up in the Springtime of 2005.  Mom was at my house everyday during that time as she was helping care for my kiddos.  During the Summer months we noticed a slight droop on the left side of Mom’s face.  It affected her smile more than anything.  Her speech took on a slight lisp.  It was an annoyance, but nothing terrible.  The Doctor ruled out a stroke and thought she had Bells Palsy, which usually heals itself within 18 months.  Well, she didn’t get better and continued to get worse.  The choking started… at first, it was only when drinking, especially carbonated beverages.  Overtime, we had to be careful that she only ate soft foods.  Her speech continued to get worse, but I could still understand her.  The first Neurologist we saw ran some more tests, all Mom’s motor skills were good.  She ordered an MRI… looked me in the eyes and said “if her MRI comes back clear, I’m not going to worry about her”.  Her MRI was clear, of course it was.  ALS doesn’t show up on an MRI.  Six months later, we were back in that same Neurologists office and she wanted to know why I hadn’t taken Mom to the emergency room (she was writing all the time now as we couldn’t understand her speech at all).  I was angry, she was the Doctor who told me she wasn’t worried.  And what, I might ask, would an emergency do for someone who couldn’t talk?  We already had all the emergency situations ruled out.  When we left the office that day, she told me that she was referring us to a Neuro in Portland.  I was given the name but NO other information.  I don’t take these things lightly and had a STRONG dislike for this Doctor, as did my Mom.  We let it drop because we didn’t want anyone saying we had an issue because of her race (I am the most NON-Racist persone that exists,  I do not tolerate mistreatment or idiodicy from anyone).  Once home, I quickly did some research on the specialist we were going to see.  Of course, our suspicions panned out.  The new Doctor headed up a center for ALS research. We were going to be diagnosed.  With a couple of weeks the official diagnosis had been made.  Even though we knew this was coming, it was like a sledge-hammer landed when the words were spoken.   Two years ago, my Mother could do all the normal things we expect to do at not quite 50 years old.  She was caring for her grandchildren, walking, reading, playing with her dog and cat, driving a car, eating and drinking REAL food… Today she is in a wheelchair fulltime.  She cannot speak at all.  She has use of her hands, although they are also starting to lose function.  Even her neck is starting to become weak, requiring a brace to hold her head upright.  She has a PEG tube for nutrition, someone must take her to the bathroom and even help her roll over in bed.  My Mom turned 50 in June.  This is a devastating disease that has robbed her of all the things she should be able to enjoy.   It has forced TeenGirl to be raised by her sister and stolen my children’s Grandma.  It isn’t fair, it is reality.  We can scream about the unfairness of it, or we can accept that this is one thing we cannot change and we can do everything possible to make it easier for Mom.  That’s the only choice we have.