Friday, November 2, 2012

Halloween and Wellness Check

Halloween 2011

Our little Jessee

I forgot how much stuff it took to travel with Raygen when she had her trach.  She napped last year while big sis hit the pumpkin patch.

Halloween 2012

Raygen waiting for big sis to get out of school.  She had on the cutest Halloween outfit.  I can't believe how far she has come since last Halloween.  It seems like another life.   
We took the girls to hand out candy at Randy's work.  Zoie looked so cute in her costume.  She is such a good girl.  She is such a loving big sister.  I can not believe she will be 9 next week.  How time is just flying by. 

I couldn't get Raygen in her costume, but I didn't care.  I got pictures of her taken in her costume and I can't wait to share them with you soon. 
Raygen had her 19th (Suppose to be 15 month, lol were a little behind on wellness checks) yesterday.  She is 24lbs 8oz and 30 inches long.  She had to get 3 shots and my heart just broke.  She cried for so long and it was the saddest cry.  You could tell it hurt and she was scared.  Her ears are "red" and still have "fluid" in them, but the doc said no infection.  Her tonsils still didn't look that great but the doc didn't think she needed to do another round of antibiotic at this point.  So we will just watch her very close.  Her doc is also concerned about her right side.  She doesn't use her right arm or leg as much as her left so she was going to make a referral to a neurologist. 
I also scheduled Raygen's Big appointments yesterday and I am terrified for both of them.  She will have her lung perfusion test at Seattle Children's on November 13th.  When she had this test done about a year ago at Tacoma they sedated her.  At Children's she will get a small iv for them to place the dye in her system, but no sedation.  They will just wrap her super tight.  This is a double edge sword.  I know she is going to freak out, but by not being sedated we take some of the risk away from the test.
Her surgery for ear tubes will be December 6th, again at Seattle Children's.  This one really scares me.  They have already booked her an icu bed just for observation after surgery and it just makes me nervous.  The ENT doc may also look down her airway during surgery to see if there are any changes with her vocal cords.  Raygen's airway is working for Raygen and it scares me that they may damage it again while looking and we could go back to having a trach.  So Randy and I decided that we will discuss this and see if this is truly necessary before we say "go ahead."
SO much to stress about.  But on a good note Zoie's 9th birthday is Tuesday and I am taking her to the American Girl Doll Store on Sunday and she is so excited.  I am so excited to spend some time with my girl.  I know the next few months we will have to be apart while Raygen is having test and surgery so I need to make Sunday and her birthday extra special. 
Hope you all have a great weekend!