I can't believe that it's been so long since I have updated this blog. I know every year I promise to write more and then I don't. This year, it is going to be a mission for me. I need an outlet to get feelings out and since I don't think that anyone is reading this anymore, it's a safe place for me to do so.
So.....Gillian has continued to give me gray hair. I should back up and say that she is at UMass Amherst now, as a Freshman. Wait! Am I old enough to have a child in college? Oh, that's right, I was young when I had her....or else I am really old now. You choose. Gillian had her large intestine removed. If you so desire, you can read further and come to the place where it all happens. Because she has no large intestine, a flu bug most likely will put her in the hospital with dehyration. Never fails. This is what happend this past week, but not only did she need fluids, she needed blood too. She was severly anemic and had to have 2 blood transfusions. I am working with the hemotologist/oncologist here in Syracuse to get her an appointment to be seen when she gets home. Now, you might be wondering why we would even know a hemotologist/oncologist. Back when Gillian had Ulcerative Colitis, she was on medication that gave her eosinophilia, basically made her red cells look funny. Again, I wrote more about this back in '08 when it was going on. So, the MD at the hospital in MA wants her to have a bone marrow biopsy. I asked him if he gave her the blood, could she see the hemotologist here in Syracuse when she came home this week? He was fine with that and I am trying to arrange that.
But let's talk about how shitty it feels to be 250 miles away from your sick child shall we. It feels really, really shitty. Guilt doesn't even cover it. And of course this has to happen the week before finals when she should be reviewing. But, I have to believe that all things happen for a reason. This week while she is taking finals, she feels good and that is what counts. Cheryl and I will be taking a whirlwind trip down there on Thursday to pick her up and turn around and bring her home. I think I will be able to breathe then!
One good thing that came out of this is that an angel appeared to us! Gillian went to University Health Services (UHS) without her cell phone charger or computer. So, after her phone went dead, she had to call me collect. After the first time of doing this, we devised a system where she would call me, I would deny the charges and call her back. But she really needed her phone. To text, access the internet and make calls. So, I got online and sent out and SOS to my Queer Moms and lo and behold! Someone who lives in Northampton e-mailed me and asked what they could do. She ran out at 9PM at night after conferencing a phone call between Gillian and I with her and got her a phone charger! Once she met Gillian and found out she was pre-med, she went back out and brought her back some reading material! Gillian was so happy! And I was very relieved. And I had an extra pair of eyes! Thank you so much to our angel!
Katie is busy in second grade. We had a great parent - teacher conference where we learned that she is starting a third grade reading level. Her wonderfully nurturing and experienced teacher has been working hard to challenge Katie to work hard and do her personal best. It's no suprise that she likes to read as I am always with a book in hand. But, one thing that does escape me is the fashion diva that she has become. She can only wear certain brands.....seriously! So, my days of buying expensive clothing are pretty much over. I still order custom outfits that she pics out, but other than basic Mini Boden and Hanna Andersson, we are a Justice, 77 Kids and P.S. household. I just took a HUGE bin of clothing to a high end consignment store and am looking forward to a nice big check in January! I used to justify my spending lots of money on clothes for her by selling on e-bay, but sadly, e-bay has become so hard for sellers to make any money that I decided that this check with go towards a vacation!
I have great news about my back and leg! I finally caved in and tried the Spinal Neurostimulator trial! It was like a miracle! The first night I was sore from the procedure, but the second night, I slept 6 consecutive hours for the first time in 10 years. I woke up more refreshed than I have in a long, long time. I went to Church on Sunday and SAT for the entire service (standing up and sitting down caused a lot of pain because the leads were still on the outside) with no pain! What a miracle! I am scheduled to have a permanent system implanted sometime in the next 2-3 months. I can't wait!
We are eagerly looking forward to Christmas and all that it brings with it. I love that Katie looks forward to Santa coming and going to church and the magic that comes with the coming of the Christ Child. We are singing the Messiah this coming Sunday in Choir and I am looking forward to it. It really helps to bring in the Christmas spirit.
Well, that is the update for now. I have been reading a lot of books and should update you about the good ones and not so good ones. Maybe the next blog, will be about that!
Well, I need to get Katie to bed. I promise to write more and write it sooner. Actually, maybe I will throw some pictures your way!