I have been mulling over in my head, how do I even begin this story?  How much do I even share? My attorney advised me that less is more.  I agree in some aspect, however, I really want to encourage people in our situation to fight for their child…doing whatever it takes to see that they’re in the best place.  To educate parents on their options once the district denies their requests.  It’s not an easy road ahead.  It’s taxing on everyone.  Everyone.  But our story is proof that it is all worth it in the end.

During the spring semester and summer months, we had meetings with our advocate and the district to discuss “options.”  I chronicled all of those meetings because they are important to our journey, and I knew that at the time.  You can read about our meetings starting here.  Our advocate, by the way, is amazing and she will continue to accompany us to our meetings for quite awhile.  I don’t see us ever dealing with a school district without an advocate.  You can learn more about our advocate on her website.

I had a wonderful trip to Paris, which seems like a dream.  It honestly doesn’t seem real anymore.  It was a wonderful “dream,” though!

Ten days after I came home, we had our meeting with the district to determine where the most appropriate placement for Emma would be.  It didn’t go favorably, remember? To have to endure a meeting like that one day before a huge surgery for your daughter is something that no one should have to go through.  Too many emotions going on in such a short amount of time.

Emma had her hip surgery the following day and it went well.  We had 3 nights in the hospital and while we had ups and downs, things went really well.  We came home in a state of mind not unlike new parents have bringing home their newborn baby.  Will I break Emma?  How fragile is she?  How dependent is she?  We had to learn about the new (and temporary) state of our daughter.  She was immobile for 6 weeks.  It was tough.

From leaving a meeting that did not go as we had hoped, to surgery barely 15 hours after the meeting, I dropped the subject on my blog.  But deep down we knew we had decisions to make.  Do we press forward?  Are we so certain of the district’s wrongdoing that we were willing to take legal measures?  Are we so certain of Emma’s placement that we would personally place her at this private school and take her out of public school?  It’s a huge risk, that if it ended poorly, would mean Emma would have to return to the district, due to lack of finances.  This is definitely not a decision to enter lightly.  The only time we had hired an attorney was to draft our will and all that legal “shtuff”.  This was different.  It took many discussions, and they weren’t easy.  There were tears and uncertainties.  Ultimately it was a discussion that we had with a very close friend that helped clarify the decision.  She encouraged us to press forward.  We had come this far.  We were this passionate about doing the right thing for Emma.  What did we have to lose (minus a nice little retainer)?  Brett was (understandably) nervous about the finances.  How would we juggle attorneys fees with the monumental cost of a private school?  In short, we couldn’t.  We couldn’t swing those bills.

We are so fortunate to have the family that we have.  We are truly blessed.  We had family that told us that Emma needed to be in the right setting.  The district wasn’t worthy of educating her.  And therefore we had family that helped pay for her tuition while we ultimately decided to proceed with legal action.

That day after the meeting (which was the day before the surgery), our advocate immediately gave us the name and number of the attorney she recommended.  She warned me: she’s a tough ass.  She doesn’t mince words.  And she’ll tell you exactly what she thinks.  Perfect!  I don’t want some soft cookie representing us.  Oh yeah, and she’s undefeated.

I have to tell you this story, not because I want “revenge.”  Not because I want to “expose” anyone, though I have visions of that.  I am telling this story because people need to be aware of situations with the districts.  We need to be aware of our kids progresses they make.  The evaluations that they undergo.  And when things don’t work the way they should, I want people to be encouraged to know that there are options out there.

Until tomorrow, my friends!

You know how the saying goes.  This will be short and sweet, as I need to get to the hospital early today.

Emma’s taken a step or two backwards.  Yesterday she needed a blood transfusion because her white blood count was low.  After the transfusion finished, we noticed a few symptoms (of what, we don’t know) starting:

• Facial “droopiness” on her right side…reminded us of the stroke she had when she was 2.
• Unusual movement with her tongue, which I think is new seizure activity.
• A fever of 101.5 that was stubborn to break, but finally did.
• Uncomfortable and becoming angry.  She hadn’t been like this yet.

We’re not sure what these symptoms point to.  But because of her history, today they will do an EEG and MRI on her.  The MRI is a biggie for a few reasons.  It requires general anesthesia which is risky with her condition anyway.  Then you factor into that the recovery.  More than anything, we are checking for possible stroke (although they think it’s unlikely) and just to see how it compares to the MRI of ’09.  The EEG will check for new seizure activity.  Are we seeing a new kind of seizure?  Seemed like that yesterday.

What I’m hoping: this is all just worry and she was super-tired from yesterday.  We had quite a few visitors, and perhaps she didn’t get the rest she needed?  Last night, after I left, she got a sandwich to fill her belly and a good dose of morphine and/or valium.  Brett wasn’t sure on which one!  Either way, it’s a cocktail for a good nights sleep!  I’m headed in early so I don’t miss the visit with the ortho, anesthesia, or anyone else.  I’ll keep you posted.

In the meantime, please continue to keep her in her thoughts!  And pass this on to a prayer group or church if you have one.  The more prayer warriors on Emma’s side, the better!  She will get through this!  It’s just not as  quickly as we had hoped.  Thanks to my faithful blog readers!

Yesterday was such a great day for Emma.  Of course she was really exhausted and really sore, but she was recouperating much better then Brett and I thought she would.  We really didn’t have any expectations going into this, but she did amazingly well.  We’ve been able to stay on top of her pain meds and keep her very comfortable.  It’s important to note that this hasn’t hampered with her appetite at all!  She still has a very healthy appetite!

We had few visitors yesterday…just family.  Although I would’ve loved to have more people stop by, I think it was in her best interest we keep in low and quiet.  Even though, she was still able to doze in and out of napping while family was here.  Today we have friends and more family coming, and I know she is going to be so excited to see them!  And then she’ll doze.  Mid-sentence.  Love that!

Mason did well yesterday.  He was inquisitive, as always.  He looked at the picture of her x-ray.  He saw the abduction pillow for her legs.  He was inquisitive but shy at the same time.  He did not want to leave.  He mostly didn’t want to leave his Daddy.  Brett has the fortunate ability to take the week off of work.  His clients aren’t expecting him.  So he told Mason he’d take him to see a movie tomorrow and out to lunch.  Wonderful idea.  Wonderful Dad.

Speaking of which, I left my wonderful husband and amazing daughter to come home around 7:30 last night.  She was cooked.  She had a very big dinner, a fresh dose of valium and she was out!  Here’s how I left her last night.

Angel Sleeping

And I assume I’ll arrive to her eating a nice big breakfast!  Or, maybe she’ll sleep in for us.  Anyway, it’s 6:30, and I’m thinking it’s time for me to start getting ready.  I don’t want to miss any special time with her, or visits from doctors.  Plus I need to relieve Brett for awhile.  Oh, on the more technical side, epidural will come out tomorrow.  They usually send a patient home 24 hours after that.  So we’re looking at a Friday release, which is just fine with me.  I need to make sure her pain is under control and that we feel confident she’ll be comfortable at home.  No one is pushing to go home early!  Thank you again for your comments, prayers, and well wishes!

Best,

Emma is sleeping peacefully next to me. Brett is sleeping peacefully next to me. Her surgery went beautifully. They were right on time and the surgery took the expected about of time. The hope looks great from the fuzzy x-ray we got.

She woke up from recovery in fine Emma fashion, wanting to go right up to her new room! Once in her new room, she wanted the tv on and lunch to be delivered. The food hit the spot and she was out as Grandma and Grandpa were leaving. I’m not a napped by nature, so snoozing in the hospital is not really and option. Perfect timing to let you all know her status!

Her pain is being controlled by epidural, yay for those! I will keep you posted on her progress tonight. Thanks for your positive thoughts and prayers. They are working!

I got home Sunday evening.  It was so good to be home and see the faces of my sweet children.  And my husband.  I missed them all!  Monday morning started early as I woke up around 4:30.  I knew this would happen.  It’s been awhile since I last traveled to Europe, but I didn’t forget about the jet lag that ensues!  Fortunately for me, I woke up feeling a little motivated to get some stuff done.  Consider that “stuff” laundry and unpacking shtuff.  Check!

I’ve downloaded some of my 500+ pictures.  They turned out great!  And when I combine those with the pictures of my mom, aunt, and cousin, we will have a well-rounded album of our trip!

On my agenda this week: grocery shopping (done), visit by the alarm guy Chris, 1 new tutoring client who wants a heavy dose of math (yay!), another tutoring client, coffee with my girls, and training.  That last one is gonna hurt.  Bad.

Monday we have our placement meeting for Emma.  That’s Monday, August 25th.  As in 2 weeks before school starts and one day before Emma’s surgery.  Um, stressful?  Yeah, a bit.  But we’re prepared to win, and so therefore we will.  Will not entertain any other thoughts.

Have I mentioned Emma’s surgery much?  I don’t think so, but I can remember (on account of the jet lag, of course).  Anyway, it’s her hip reconstruction on Tuesday morning first thing.  We’ll be in the hospital 2-3 nights.  The hardest part will be Emma in a wheelchair for 6-8 weeks.  Non-weight bearing.  Ugh.  At least we won’t be missing anything fun outside as it’s a billion degrees with a thousand percent humidity.  Slight exaggeration.

I hear my daughter being ornery with her brother so I’m wrapping this up.  I promise more pictures, but here’s one to tide you over!

Monet's Garden at Giverny

We had Emma’s pre-op appointment yesterday with the orthopaedic.  Dr. K is the “hip” doc and so that is who we see.  And we got so many of our questions answered.  And one super-great piece of information…Emma will be in the new tower!  Have you seen the new tower?  It’s beautiful!

This is the lobby:

And this is what a new (private) patient room looks like:

So are we looking forward to this?  In certain ways, yes.  This needs to happen.  Her hip needs to get fixed.  It’s obvious to the untrained eye.  The hospital stay will be nicer in a new room.  The recovery will be better because there will be no SPICA cast.  This is what Emma’s cast looked like when she had her first hip surgery at age 3:

Standing in the cast was frowned upon…but whaddaya gonna do?

This go around, I will be looking for a water therapist (anyone have any ideas with that?) to start therapy in the pool after week 3.  She’ll be in a wheelchair 6-8 weeks.  We will bling it out, no doubt.  And I got the clearance for roller coasters after week 12.  If you’ve been reading my blog for awhile, you know that every fall we see Dr. Borchert in L.A. for her eyes.  And this, of course, requires a trip to Disneyland.  It’s an annual girl thing.

So the plan is this.  Paris on Thursday (how do you say “woohoo” in French?).  1 week to recover upon coming home.  Just recovering from jet lag takes that long.  And I’m sure it won’t be any easier than it was 10 years ago.  One week after I return home we have the surgery.  And we’ll be buckled down in the nice cool house while it’s sweltering outside.  Could be worse, right?