Tuesday, June 19, 2012

The Uuuups and Doooooowns

Things have returned to the hectic lifestyle that is our norm.  I'm trying to get back to 40 hour work weeks, but germs seem to like to get in the way of that.  Every time I get close and think it's going to happen, I get sick and feel like I have to start all over again!  For example, I made it through our entire cruise without getting sick.  Michael started the trip with an ear infection, and by the end of the trip Morgan was complaining of an ear ache.  We were skeptical at first, but when she woke the first morning back from the trip complaining about her ear first thing, I called her pediatrician. 

Now on a side note, we were talking about how nice her doctor is on the way to the appointment.  She told me she really liked Dr Redwine but Nurse Ashley is not nice.  When I asked her why, she told me that Nurse Ahsley scratches her throat with a stick and makes it hurt.  I couldn't believe she remembered being tested for strep last fall.  I reassured her that we'd only be looking in her ears, and Nurse Ashley definitely hates to have to put the stick in her throat and only does it to make her feel better.  I even asked Nurse Ashley about the strep test, and she also assured Morgan we would just be looking in her ears.  Of course when Dr Redwine checked her ears, nose, and throat she noticed some splotches at the back of her throat and swollen glands.  What did that mean...?  Poor Nurse Ashley had to come in and put the stick at the back of Morgan's throat!  Only ice cream would do after that betrayal!  To top it off, Morgan's strep test came back positive...and so did mine.

This strep has kicked my butt!  It has taken a full week to get over it.  Today is the first day I've felt normal again, and that was after 13 hours of sleep last night!  Sheesh.  I'm trying to stay upbeat about it though.  If I can make it through the crazy lows of the last six months, I can definitely make it through this little dip.

My meds are slowly diminishing.  Check out the two boxes in the picture below.  I had to swap the boxes for my active and inactive prescriptions, because the inactive box was overflowing!  The pink ones are the pills I'm currently taking, and the black one holds my old prescriptions that I've been able to drop! Also note the giant pee jug I have to fill when we make the trip to Mayo at the end of July...fun times.


My heart actually dropped when I got a phone call just before our trip.  My doctor called me after some bloodwork.  He never calls unless there is a problem, and I usually hear from the nurse if everything is ok.  He laughed and said there was no way he was going to let the nurse give me the best news yet.  He had spoken with the doctor at Mayo, and they both agreed they wanted to start tapering my drugs.  I've completely dropped the Cellcept from my daily lineup.  I just did another blood draw and spot check today, and if everything is stable, I can cut my Acthar injection dosage in half.  That would be awesome, because it takes me about 10 - 15 seconds to get the full mL into my leg.  My hand is always shaking by the time I finish....I think it is a mental thing.

I'm excited about the end of July and going to Mayo for two reasons.  First, if my test results are still stable, I can drop the Acthar injections all together!  On top of having to stick myself, it has the lovely side effect of weight gain.  I have found that sticking myself hurts a little less than having Michael do it...thanks to you for doing it for me though baby!  Second, when we go to MN, I'm going to meet some really cool girls.  Two of them I've met online through this ordeal, and they are also dealing with kidney disease.  Another is the tiny little Anwyn Grace whose mom is my dear friend from UNC!  I'm bummed Morgan won't be with me to meet her.  Morgan travelled to MN when Erin was pregnant with Anwyn for the baby shower.  It would also be cool for Morgan to meet the kids of the girls I've met online.  Their kids are also 4, and one of them was born the day before Morgan...kinda neat!  She'll have fun here in OK with her Grammie and PawPaw though.

Off to find Michael to drag him along to yet another appointment this afternoon.  I'm sure my insurance company has been just thrilled by my 2012 portfolio to date!

Monday, June 11, 2012

Birthdays and Obstacles

Morgan turned 4 at the beginning of June, and I was thankfully well enough to be able to go on her Disney Cruise!  She warned me that if I wasn't better, I'd have to stay home...I warned her that if I wasn't better, she'd be staying home with me :)


Now true to our style, this trip wasn't without plenty of mishaps.  To kick it off, we sat down on the plane at 6AM, and I realized we had left the passports and M's birth certificate at home.  Michael had to jump off the plane before we pushed back to go home and get them.  He luckily got on a flight that put him in Florida by 5:30 that evening.  I had the pure joy of travelling with a very tired 4 year old while keeping up with all the carry-ons....her pillow, blanket, 3 stuffed animals, & backpack; my purse and the backpack Michael was originally carrying.  Man was I thankful that Disney took care of our checked baggage.  We finally made it to our hotel in Disney world around 2 in the afternoon.  We booked this hotel, because they had multiple pools with lots of water slides, a pirate ship, etc.  What I found out after walking 0.2 miles to our building and up two flights of stairs in the rain (after getting up at 4am CST I might add) is that the nearest food was in the pavilion another 0.2 miles away.  Morgan and I had shared some gum and some of the little cookies they give you on the plane.  Needless to say we were both a tad cranky.  She didn't want to walk any more, and I couldn't agree more after the morning we'd had...oh yeah, did I mention it was raining and Michael was somewhere over GA at the time.  I called trying to order room service only to find out it wasn't available for another 2 hours.  Dejected and a little perturbed, we headed out in the rain in search of some food.  Our options were calling for pizza (we'd have to walk the 0.2 miles to the bus stop, ride to the front office and back to pick it up), buying something from the vending machine at the bus stop, or walking to the pavilion.  We chose option number 3 and crossed the lagoon in the rain...oh lovely, let's throw some lightening in the mix...to the pavilion.  Let me just say I've had cafeteria food in high school better than the food we inhaled that afternoon.  After enduring a meltdown resulting from being told no she could not buy a new princess castle and more princess dolls (she has all of the above at home), we trudged back to our room through the storm to wait for Dad to arrive.  On the bright side, the rain did let up enough for us to take a freezing dip in the pool for about 15 minutes while waiting.  The fight to get her out of the pool was definitely worth her enjoyment while swimming...no really it was!  Dad was finally here...to the rescue!



Were were awaken by a disgruntled man wanting our bags to take to the ship.  Apparently they switched our rooms, and the note for us to have our bags ready to go by 8am went to the wrong place.  We had a nice breakfast in the rain the following morning, and then finally some sunshine!  We were able to swim in the pool, slide on the slides, and jump off the deck of the pirate ship before heading to the real ship. 


Wow what a line!  4,000 people is a lot of people to cram into a ship single file, but we made it on and tucked away those blasted passports.  We had dinner each night with two ofter families and discovered that Disney profiles their guests.  The other families each had only children who were also 4.  They were both from Texas and worked in the oil industry in some fashion.  The kids hit it off, and it was fun to bump into them around the ship.  Morgan loved the Mickey pool...a 2.5 ft deep pool in the shape of Mickey's head which (by the end of each day) was filled with a warm, cloudy mixture of chlorinated water, sunscreen, and piss.  I put my feet in, but Morgan and Michael enjoyed the experience of swimming under water...okay she was too cute doing this and absolutely LOVED it!  I'd like to point out that they each left the ship with an ear ache and strep.  Coincidence....I think not.  We found out that Morgan also loves rapids.  We got on the Lazy River at Atlantis Resort in Nassau (they define "lazy" in a different fashion in the Bahamas apparently, because this thing was M-O-V-I-N-G, complete with waves, rapids, etc), and she had a blast.  She was too short to ride the big slide on the ship by 1".  Michael and I did it...ehhh, she didn't miss much, but it looks cool.

Her favorite part was meeting Tinkerbell.  This trumped the 5 pack of princesses she met.  Amazing, I know.  She twirled with Cinderella,



showed Belle her dress,




charmed Snow White,



compared dresses with Tiana,



and learned to hold her hand like a princess from Aeriel.


Morgan introduced Tinkerbell to Ashley, and I was really happy by how much time Tink spent talking to Morgan.


We had after all waited for 30 minutes on her sparkly rear. Apparently, Cpt Hook was causing trouble in Pixie Hollow.  Peter Pan came to deliver the message in person.  Morgan was a bit intimidated by his, ummmm, animated gestures. 


We got to know the ship pretty well while becoming a Mystery Mouse Detective.  We solved the case of both the missing puppies and the stolen paintings. 



Michael and I even had a little time to ourselves.  Morgan loved going to the Oceaneer's Lab to visit the Pixie Hollow room and the pirate room.  We went to Remy's, the french restaurant up on the top deck aft.  It was a 9 course first for us both.  Three hours later we were so full, we had to turn down the cheese tray just before desert....what!?!? 

The trip was fantastic.  I wouldn't trade a thing for the super huge grins plastered all over Morgan's face the whole trip.




We made it back to OKC through the flight delays and storms.  Our bags made it back a day later....hey never a dull moment with this crowd.