Monday, May 6, 2013

The Good, The Bad, and The Unknown

 Last week I got a call from the school nurse telling me that Brynne's teacher had let her know that Brynne was having a hard time seeing the board from 5 feet away, with her glasses on.  She suggested I get her vision tested again.  Her last exam was in February.  I was choked up during that exam as Brynne sat on my lap and struggled to read even the largest of letters.  When the doctor gave me her prescription it surprised me.  I was sure she needed something so much stronger than that, but relieved that things weren't as bad as I had anticipated they would be.  So when the nurse called I had a pit in my stomach knowing that my first assessment had probably been more accurate.
Two days later I was at lunch with friends telling them about our big upcoming weekend with Brynne's dance recital and baptism.  When they asked me about how she was doing health wise, I could barely get through the vision issue without breaking down.  I'd been back and forth on the phone with our genetic counselor and the nurse a  few times and those phone calls for some reason just always bring the reality of her condition into focus for me and it can be a bit overwhelming.  It was going to be a couple of months before we would be able to meet with a doctor and get any resolution.  Her specialist had just moved to San Diego and we will need to go through the process of being referred out to someone new.  Unfortunately we don't think there is anyone in the area that specializes in what we need.
My sweet friends husbands are eye doctors and one of them called her husband from lunch and scheduled an appointment for him to take a look at things just as a favor between friends so that we could try to get her seeing better more quickly since she is still in school.  The appointment was this morning.  All of the staff were amazing with Brynne and she responded better to them than she has with ANY of the doctors she has seen for her eyes yet, and believe me there have been more than a few! They were so thorough and did test after test today.  We were there for just about 3 and a half hours and saw  a handful of doctors.  My heart was so full of gratitude as I thought about how blessed I am to have such amazing friends who have always so willingly offered their skills and expertise to care for Brynne.  I have some pretty incredible friends.
Here's what I learned from the exams today.  Brynne's prescription from Februaty was pretty dang close to the same, but I did go ahead and order her a new set of the stronger lenses for her glasses.  The reason she still can't see isn't due to the lenses, she actually has something in the back of her eye obstructing her vision.  There is nothing that can be done about this. She just isn't going to be able to see well even with glasses. Ever.  I also learned that one of Brynnes eyes that tends to wander a bit is hardly seeing anything.  She needs to wear a patch, like a pirate, for several hours a day to try to strengthen the weak eye or she will loose the vision in it completely.  The doctor told us that as it is right now even with her classes she could never pass a drivers exam. I know that as with all things related to Mito diseases, as time goes on it can only get worse.
How this news will effect her whole life has been  bouncing around in my head all day.  The one bit of good info I got was that he thinks she might be able to do another surgery to really open her lids, that are back to looking just like they did before surgery,  He suggested we get a few more opinions from other plastic surgeons.  I keep thinking I'm doing fine with all of this info, and then I find myself tearing up out of nowhere.
Probably the fact that Brynne came in complaining of chest pains last night and couldn't sleep because of it has added a little to the anxious feeling that has come and gone throughout the day.  I talked to the school nurse and principal and they are already discussing options for how to accommodate Brynne for the remainder of the year and what can be done for her next year. We have such great staff at our school caring and looking out for Brynne.
For now all I can do is make sure Brynne wears her patch after school, gets her meds, wait for the doctors to let me know when they will be seeing her again, and just love her.  But since she was back at  school and I couldn't do any of these things,  I went for some retail therapy and bought a rug that I instantly loved.  I'm not sure if I want it for my room or my dining room, I just knew I wanted it.
Then I decided I just needed to stay busy, so I went out and got everything I needed to get started painting the outside of my moms house which we are buying, and then lost myself in ripping out as many of the agapantha bushes from her front yard that I could fit into both of our dumpsters.  We even got a new neighbors to let us fill their green waste garbage can.  It felt good to be productive, to stand back and be able to see what an improvement I had made.  I loved having all of my family and a few extras come help me get things done.
I got some pretty bad news today.  Hard news. But still I have even more to be grateful for.  Good friends, good doctors, good staff at the school, hope for a more effective lid surgery, a really good start on our remodeling project, and let's not forget that great rug!   What comes next is kind of unknown, but there's no point in worrying about what might be while I have so much good right in front of me right now.  I'm going to pray. I'm going to sleep. I'm going to run. I'm going to go to Drew's baseball games and drive Garrett to the gym.  I'm going to get Brynne to her dance class. I'm going to turn my music up loud. I'm going to sing. I'm going to smile. I'm going to love.  When the time comes to deal with the hard stuff, I will, but until then I will enjoy the moments I have now. The good, the bad, and the unknown.
*The old pics of Brynne were sent to me via text from my sister Janelle last week as she had been going through old photos on her computer.  They aren't the very best quality, some are even just pictures she took of her computer screen. They came after the call from the school nurse as I was feeling a little low.  I loved seeing her tiny face from before we knew there was anything wrong, before her lids started to droop, before she was so much smaller than everyone else her age.  I have lots of other pictures of Brynne from this time period that might be cuter of her, or better quality, but these ones came as they are and boosted my spirits right when I needed them to because my sister is just stinkin awesome. I love you Janelle.


Mike Bohn said...

Brynne has got to be one of the most adorable, genuine kids I've ever met. So sorry she and you have to endure this.

Melanie said...

Oops, that was supposed to be melanie, but I'm sure Mike feels the same. :)

Tawna said...

The pictures of Brynne are adorable. With many of them I at first couldn't tell if they were you and Janelle or Tara, or Brynne and one of Janelle's kids! She looks so much like you. Big bright smile and beautiful brown eyes!

We all love you guys, Jen, and pray for you often. We sure are blessed to have Brynne's awesomeness, and your energy in our family!

(And you are buying your parents' house? Say wha? Do elaborate!)