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Well I am 3 weeks post op and in the those three weeks it has been a ride.  I was blessed with an amazing day with wonderful friends and family for my birthday party.  I got to crawl around in the Thomas the Train inflatable obstacle course.  I visited with all my grandparents, aunts, uncles, cousins, friends and neighbors.  It was awesome!  Thank you everyone for coming to celebrate with me and (not listening to mom) for all the gracious presents!!  So much fun with new toys and new clothes.   Grandpa Rama made me an awesome Bday Cake.  I will get a picture of it posted so you can all see what he made me.  It was yummy too.  And the weather was just perfect.  So glad we waited.  My Bday was actually in March but M&D decided to wait til spring so we could have an outside party.  We lucked out.  Thanks to great grandma Jan and grandma Carrie for all their hard work cleaning and party prep.  M&D couldn't have done it without you!
I have been back to school and back to therapy but my eye surgery recovery has been tricky.  Not sure whats going on...good days and bad days. Unfortunately more bad than good.  M&D are on high alert.  I heard them say we may be back at U of M this week.  Uh oh.  I hope not.  I hope I heal up real quick cause this lady needs to get up north for the Memorial Day weekend.  Cross my fingers that my eyes start to recover and heal better...
School is almost out, I cannot believe it.  It has been a crazy year cause I think I missed more than I made.  But that's how it goes.  I've been sick, M&D have been sick, classmates have been sick....it goes on and on.  I hope that every year I get better and stronger.  I have a couple more weeks and then home for the summer.  M&D are busy planning the summer so that we can have some fun around work and therapy and all my appointments.
Lets see, what else...oh yeah, we had a fun Mom's Day.  Dad and me made a scavenger hunt for mom.  We made her work for her presents.  It was fun!!  Happy belated Mom's Day to the bestest mom ever and to my great grandma and grandmas!!
I will put together some birthday pictures and share those next.  Thanks again for the amazing birthday and all the well wishes and prayers...keep em coming, I need to g

 
 
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I guess it could be worse, right?  Last time had two black eyes.  Friday went pretty well.  Thanks for all the prayers and well wishes.  The doctors hopefully helped my right eye.  Only time will tell.
It was a really long day but I am happy to say I woke up and went to sleep in my own bed on Friday.  No need for a UM Hospital Sleep Over.  M&D were very happy and thankful for that.  Everything went pretty well.  One complication though.  They found that both my eyes upper and lower had Giant Papillary Conjunctivitis.  Not pink eye but definitely severe inflammation.


http://emedicine.medscape.com/article/1191641-overview

After a steroid shot to both eyes, ugh, they completed the surgery on my right eye.  I have a month of meds for GPC and of course the hard part, figuring out what caused it and to make sure it doenst come back!
Other than that, I am doing pretty well.  I have been up and around, playing, crawling, scooting, spinning...
No school this week, doctors orders.  Woohoo!
I need to stay healthy, recover and get ready for my big weekend.  Bday Party for me!!!  The weather looks to be cooperating so hopefully I am healed so I can be outside playing with everyone.

 
 
Hope everyone has been well.  It has been a busy beginning to spring around here.  Always is, but this time it seems even nuttier.  Mom's getting busy with photo shoots.  Dad is traveling and working.  I've been trying to behave and stay healthy...I'll be honest, I am not always successful at either!
I have been trying to stay healthy for some procedures I need done but Murphy's takes over.  At least that's what Mom calls it.  Murphy's Law or something?!?  Anyway, back to the fun stuff.
I celebrated my 5th Birthday.  We are planning a little party for next weekend.  I hope the weather is good...we have a little inflatable play thingy coming for me and my cousins/friends.  Pray for dry weather please.  May 2nd.  I cant wait to see everybody.
The weather stinks right now so hopefully we get this out of the way for May.
Other than that no other major news to share.  I have been missing more school then attending.  I need to stay healthy!  Dad and I got pretty sick.  Never seen Dad that sick.  Mom locked him in the bedroom so we didn't share it.   I think he is all better now.
I am almost 100% but no school.  We are playing it safe for an eye procedure I have scheduled for Friday.  The 4th or 5th time I have had it "scheduled"....don't ask?!?
I am excited for better weather and up north.  I am hoping Grandpa Rama starts to feel better.  I went to visit him over the weekend.  We are all praying for him!  He is still tan from Florida...so is granny, wow!  Maybe next year this lady makes a little escape...


OK I am off to lots of Dr appts and therapy  More updates after Friday...stay tuned.


 
 
What a weekend.  MSU Basketball was amazing!!  Final Four, woohoo!
And now today, I woke up to M&D singing Happy Birthday.  I know it sounds scary, but they had the music playing from the Ipad so it wasn't too bad.  Anyway...I am the big CINCO today.  The number five.  FIVE!!!
Grandpa is home from Florida, Granny is on her way back, MSU Basketball is awesome and I am five.  What a great start to my week!!
 
 
 

Spring

03/12/2015

1 Comment

 
Loving the change in weather!  Good bye snow and hello green grass. OK, more like brownish yellow green grass.  Either way, I am ready for Spring.  WooHoo.  I went for a walk with M&D yesterday, first one of the year.  
Mom helped me color some spring color artwork.  See how talented I am?!  
 
 
 
 
I was recently asked to participate in a write-up featuring my very rare condition.  It is a short piece but it does such a great job summarizing everything about my rare syndrome I thought it was a great thing to share with all my fans, friends and followers.  I am pictured in the green shirt.  As you can see from my friend in the other picture, we have some eerie similarities.  
When Mom and Dad say I am one in a million...I actually have to correct them and tell them I am one in millions!!


Just copy and paste this link into your web browser:

http://www.rarechromo.org/information/Chromosome%2010/Say-Barber-Biesecker%20Syndrome%20QFN.pdf



 
 
I posted some new photos from my amazing Christmas.  Will share an update soon.  Lots to tell, lots of people to thank!!  Happy New Year.  Stay warm.  It looks like winter is on its way this week...bundle up.

ALR
 
 
Hi everybody!  The holiday season is in full swing for this little lady...even though the weather doesn't quite feel like it.  53 degrees? I asked Santa for a sled, maybe I should change my list.
Sorry I haven't updated since Halloween.  I didn't realize it was that long ago...
Since then I have been busy with school.  We hosted Thanksgiving.  Mom has been a Xmas decorating fool.  Our house is a Christmas postcard, inside and out!
 I have been shopping...several times and last weekend was our first Christmas party!!
We went to visit Grandpa Jim and the family.  It was fun.  I had so much fun I didn't want to go to bed...oops, sorry M&D.
This week is my last week of school and then I have a nice break.  I think I heard Dad say the same thing for his work.  It is going to be awesome if he's off to the New Year.  M&D said we are going up north for a bit.  Hopefully they have winter up there.

Wishing everyone a happy and healthy holiday season.
Talk to everyone soon.