Monday, November 22, 2010

No Surgery

I have been meaning to update for the past week and things just kept getting in my way, I’m sorry! I wanted to let those of you out of the loop know that Grace did not have her oral surgery as planned on November 9th. She started to run fever a couple of days before and therefore was not healthy enough to go under the general anesthesia necessary for the surgery. Fortunately she spiked this fever before we left Mobile, so we were spared the 6 hour drive! Her surgery has been rescheduled for January 11th, so all in all this is a better date for us anyway! 
The cause of the fever was a respiratory virus and is all gone now. She has also had extreme trouble with her left ear over the past month and has been in and out of the doctor’s office for it. Although she was on two different antibiotics, they were not enough to help ease the fluid and it ended up rupturing her ear drum. Although painful when it happened, it helped all that fluid/infection drain out and allowed us to use antibiotic ear drops thus allowing us to get to the source. Ever since finishing up the drops, her ear has been better!

She just received her first round of Synagis for the year (RSV antibody shots) and although I hate to see her in so much pain (they say it burns like shooting rubbing alcohol into your thighs), I am so very thankful to Dr. Hunter for staying on our insurance company to cover them again this year. These shots are incredibly expensive (around $5,000 a month for 9 months.... i.e. $40,000 a year!!!!) and not a possibility without insurance coverage. This is Grace’s 5th RSV season (hard to believe, I know!) and typically these shots are only covered for 2 seasons sometimes 3. We thought we were lucky last year when she got them and are beyond thrilled for this year. RSV is a serious respiratory virus that can get a healthy child down and out for about a week or more, but in a child like Grace it would mean weeks, maybe months, in the hospital, possibly on a ventilator, with her scarred lungs from her bout with PCP two years ago. So, we are all for anything we can do to prevent her from catching it!!

Grace dressed as "Belle" from Beauty and Beast for Halloween

Native American Princess for school program
She had her Thanksgiving program at school last week and she made the most precious native american princess I’ve ever seen! She had a blast singing her turkey songs and having me and Pop (my dad) there to eat lunch with her. She is continuing to love all things school and can even write her name now! (It does take a mother’s loving eye to recognize that the scribbles on the paper do somewhat resemble a G, R, A and C ... as she routinely leaves off the E... but I count that as writing her name!)
As we approach this Thanksgiving week it is easy for us to recognize what we have to be thankful for in our lives this year: Grace’s continued good health, happiness and her body’s continued acceptance of her heart. We are beyond grateful for the donor and his/her family and as always pray for and wish them peace, love and happiness, but add extra prayers during the holiday seasons as I know they must be hard. We are so grateful for our family and friends who have formed this village helping us to raise our sweet child. Thank you all so much!!!