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!

• Disclaimer: if you’re sensitive to a few choice words, or have an affinity for this district and their special ed team, you might not want to read the rest.  I am infuriated and this is the only outlet I have.  Consider yourself warned.

Today we had our meeting with the district.  It was for the “team” to decide the best placement for Emma.  For the record, they consider the IEP team all therapists, teachers, district rep, principal, psychologist, and parents (and in our situation, our wonderful advocate Kristina) all part of the team.  For the record, I consider the team us vs. them.  There are clearly sides to this story, as the “education team” (again, a term I use loosely) already knew what their decision was.  Basically it goes down like this:

We discuss various services provided by each school.  This, of course, is made up by the directory of the district.  Let’s call her M for now. (I’d like to call her other things, but I’ll refrain).  The director for the private school, who generously offered to be there at the meeting, had the opportunity to see this district vs. private school for the first time and had to “fill in the blanks when need be.”

The pro’s we have for the private school:

• small setting.  1:1 or 2:1 ratio of student to teacher.
• small setting in general: 15 students in the school.  total.
• less anxiety on Emma’s part due to a multitude of reasons: smaller setting, not trying to “live up” to the abilities of her peers, complete change of environment, the fact that she couldn’t stop talking about this private school for days after visiting, and still brings up the “new school”.
• the unending approach to creating success in Emma.  They don’t try 5 times or 10 times.  They try until

I flat out told M that I have lost complete trust in the special ed department of this district.  Last year was a complete loss.  Nothing was mentioned about a new placement until the very end of the school year.  There are multiple (and documented) cases of lack of supervision for Emma.  How am I supposed to trust them with the care and concern of my daughter now?  Oh, and especially when she’s even more medically fragile then she was.

The thing that really pissed us off was that this decision was primarily made by M.  Oh, and she had the “vote” of 6 other participants, none who have worked with Emma to any academic capacity.  The only attendant of the meeting was a student PT who was with Emma for one quarter.  But that was PT…like only her favorite “subject”.  Not one of them knew Emma.  And again, I flat out asked them…you’re taking a vote about Emma’s placement based on 7 people who haven’t hardly met her?  And that seems fair how?

So the next step?  We file for due process.  And hire an attorney.  Here’s the thing.  We don’t have this kind of money laying around.  At all. But we’ll make it work.   If they don’t think we’ll stick with our guns, they have another thing coming.  They could back down and agree to settle this once they see a letter from our attorney.  That would be best case scenario.  Actually, best case scenario would be for M to call us and want to settle.  But I think she’s too stubborn and pig-headed to do something that would be morally correct.  Heaven forbid she actually work toward the best interest of my daughter and not for the best interest of the district’s wallet.

Are Brett and I crazy in thinking how wrong and ludicrous it is that we have to fight this hard only to get what’s right for our daughter?  She’s fought enough in her short life.  She’s experienced more unfortunate circumstances (physically) than most people do in a lifetime.  When does she get a break?  When does she get to take the easy road?  To say we’re sick and tired of the bullshit is an understatement.  To say that we’re ready to throw in the towel is completely false.  Game on.  Bow down, bitches.

To say that we’ve returned back to “normal”, would be inaccurate.  Upon my return, I was hoping for only the jetlag to be an issue.  Emma’s behavior, however, has been the biggest issue this week.  I wasn’t sure if the medication stopped working.  I didn’t know if she was adjusting to me being back home (she has a hard time adjusting to people coming and going, least of all Mom).  I didn’t know if it was thoughts of her upcoming surgery.  Brett and I sat her down one night on the tail end of a huge temper tantrum and the truth came out.  Emma is scared about her surgery and hospital stay.  <heart breaking>  We talked with her and told her it was okay to be afraid, but that mom and dad would be with her the whole time.  She’d get a brand new room in the new tower.  I was able to get online and show her pictures.  And I told her that on Friday when we went down to the hospital for pro-op blood work, that we could go see the new room she’d be in and the playroom.  We knew she’d be on the 8th floor.

Friday came, and I took on the task of bringing her down for the routine blood draw.  She has been getting so good at these that the last few times she hasn’t even cried.  Because this time it was at the hospital, she had the worst tantrum getting it done.  It was reminiscent of the very first time she was in the hospital and she was 2 and scared.  It took 2 nurses to do the draw, a nurse, me, and child life holding her down.  And they had to do it twice because she still moved too much the first time.  The thing is, though, that the minute people leave her alone, she’s fine.  She leaves while waving good bye and saying thank you.  Amanda, from Child Life, walked us up to the 8th floor and we got to see a new room and the playroom that Emma would play in.  Emma was super-excited to see these two new places.  With Emma, it’s all about her knowing what will happen next.  Where she will go.  This is very typical behavior for kids with her condition, as for many other kids, especially ASD.  Now that she knew, we went down to the brand new cafeteria and got ice cream.  The problem was that she actually didn’t want to leave the hospital.  She thought she was going to be staying there.  That’s another issue we deal with…how far in advance do we deliver bad news?  She perseverates.

The rest of the weekend has been a roller coaster of emotions for her.  I’m just taking it with a grain of salt (easier said than done) and giving her lots of hugs and encouragement.  I also was able to print out a picture of the new hospital room.  As I type, she’s in bed taking a snooze with the picture right in front of her.  She’ll probably take that picture with her to the hospital, knowing my girl.  It’s just one way for her to have a sense of control in a situation where she really won’t have much.

To top it off, we finally have Emma’s placement meeting tomorrow afternoon.  Yes, tomorrow afternoon, the day before Emma’s big surgery.  Brett and I would much rather be spending time with the kids instead of having to prove why Emma belongs in a different setting.  And I will say as much.  I’m so frustrated with the whole situation that I have a few key points I will be making tomorrow.  While I’d like to go ape-shit on them, I will retain composure and be very firm in stating our case.  Thank GOD for our advocate, though.

I promise to keep you all posted tomorrow evening after the meeting!  And then I’ll post nightly (and maybe even from the hospital) during Emma’s stay.  We’d love any prayers and positive thoughts sent our way, especially for Emma.

So, anyone who is creative is probably already in love with Pinterest.  Consider that the wagon, and me jumping on board.  LOVE that site, and could honestly spend way too much time there.  Anyway, today I was on browsing around, and I found a great kids project that I would love to do this weekend for Emma’s hospital stay.  Check this out!

Pinterest

Have you discovered Pinterest?  What have you found?

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

As I write this, I am on a train headed to Disneyland Paris. Now, if you know me, this does not surprise you. I am a huge Disneyland fan! We’re on day 4 of our Paris trip and I am having a wonderful time. I’m seeing so many great things, and learning a great deal too:
- people here are skinny for a few reasons: they walk everywhere, there are tons of stairs, and their food is amazingly fresh. I have hardly eaten anything processed!
- I am independent. Give me a map to the city and I’ll go anywhere. I feel very safe here, and the metro system is easy to use. I could definitely live in a big city.
- the French have been very nice to us. The men are super nice, really. Very helpful. We have only encountered two unkind people. And they were women. Hmm
- macarons. I don’t even have the words to describe them. Wow.

Here are a few instagram photos I’ve taken so far. Enjoy!

On Thursday I head to Paris!  I am super excited, with a sprinkling of nervousness thrown in.  I’ve never been away from my kids this long.  And I’ve never been in a different country then them.  But I’ve got everything packed up, with the exception of my toiletries.  I’m going to be “sneaky” and stuff my purse in one carryon, and bring another carryon.  And then a big ‘ol suitcase that will be underpacked, so I can bring back fun souvenirs!

I had to email the district director today because she never did get back to me about setting up a meeting for tomorrow.  Tomorrow.  Well, childcare is no longer an option, so waiting until my return is what will happen now.  And, as it looks, it will be August before we actually meet, due to their vacations and Emma’s surgery.  Ugh.  Nothing like not knowing where your child will go to school.  Super-frustrating.  But now I don’t have this stress to take with my on my trip.

Anyway, back to my trip.  Yay! I will try to post while I’m there.  I’m hoping I can post pictures too.  I have the “gadgets”.  I’m just hoping the Wi-fi works in our apartment.  Our plans on day one?  The market and the Eiffel Tower!

Bon Voyage!

We have increased Emma’s dose for a second time just to make sure we’re getting the maximum potential out of the medication.  I am very specific in that I don’t want my daughter “drugged” or “numb” to anything.  I’ve seen that with other medications and it’s not fun.  But it is not out of the ordinary for me to want to “take the edge off”.  At her age, there are certain behaviors we should not be seeing right now.  I think the changes my daughter has made are night and day.  She’s polite, sweet, compassionate and cuddly.  Not that she wasn’t any of those before, but before it was more forced or reminded by us.  Now she does it willingly.  It’s the sweet little girl I always knew was in there.  I don’t know that we need to increase her dosage anymore.  She’s still on a relatively small dose.  But I don’t want to push the limits if I feel it’s not necessary.

Below: picture of Emma holding her little brother who is 3 days old.  Precious.

7-2-06

On another note, I leave for Paris in 4 days.  Eeek!!  I have a mix of emotions…excited, happy, nervous, anxious.  Butterflies in my tummy more and more.  I’ve never left my kids this long.  And I haven’t been out of the country since having kids.  But I keep at the forefront of my mind all of the wonderful experiences I’ll have.  And that creates excitement.  Last night I had a dream I slept all through the flight(s).  I wish.  Why haven’t they invented teleportation yet?  Since 14 hours on a plane is a must in order to get to our destination, I am thankful for these things: family to keep me occupied, iPad, Bose Quiet Comfort 15 headphones, books on iBook, Ambien, and Xanax. (the last two not to be mixed together, nor with the free alcohol I hear you get on international flights)

Some necessities for travel…thought I’d share.  Water bottle (see how cute it is?) if tap water is declared potable (Paris is). Large reusable bag, especially useful in Europe. Travel candle, Scentsy.  You never know how your accommodations will smell.  Laundry bag. Umbrella. Baby wipes, you just never know.  Learned that lesson in Russia. One nice pair of shoes to go with multiple outfits: hello Tory Burch! Hat.  To the right…rolled clothes…to save space.

Counting down while packing up!

Where’s the most exotic locale you’ve been to?