So, we have decided to go ahead and do some genetic testing on Aubrey to see if we can finally determine the cause of her all her challenges, and see if we can figure out what we can expect for her future treatment. I made the phone call today. They gladly informed me that the soonest Aubrey can be seen is JULY!!!!!!! That's right! Today is December 2nd, people. So, in 7 months we can see a genetic counselor. Then they'll decide what tests she needs. Then they'll run the tests. Then we'll wait for the test results for who knows how long. And THEN maybe if we're lucky, in a YEAR we MIGHT have some answers!
UUUUUHHHHHHHHHGGGGGGGGGG!!!!!!!!!!!!!!!
As you can tell from all of my caps letters and exclamation points, this has been a frustrating day.
There are so many reasons why this is hard news to hear. First, we've been trying to figure this out since Aubrey was 5 months old. We've been working on this for a long time, and even though having a specific diagnosis won't fix Aubrey (not that she needs "fixing") and probably won't change her treatment...it's really hard not knowing exactly what we're up against.
It's also hard because it feels like as soon as we feel close to something, we end up having to wait wait wait. The wait for the neurologist? 4 months. The wait for the muscle specialist? 6 months. The wait for the geneticist? 7 months! I am just so tired of waiting.
And probably the hardest part of learning about the 7 month wait is the desire to have more children. Matt and I know for sure that we want to have more kids, despite what some genetic test may tell us. If we had another child just like Aubrey we would be thrilled, because she is the light of our lives! But it's the "when" that we just can't figure out. When is it right? Maybe we should wait until Aubrey is walking. Maybe we should wait until we get the testing. Maybe we should wait until Aubrey goes to school. Maybe we shouldn't wait.
Waiting.
Waiting for doctors. Waiting for answers.
Waiting for inspiration.
5 comments:
Ugh- how frustrating! With the rate Aubrey's been progressing lately, she could be running circles around the genetic-testers by July! Still... waiting is no fun.
That sounds really hard... especially since I wouldn't consider myself the most patient of people. I know I've told you before, but I just love reading your blog, I love how open and heartfelt your posts are. OH, and I love the new title of your blog. So, I guess I just have to be patient while I wait for another post from you! ;) I hope things go faster than they are projecting.
I agree with Melanie! By the time July comes around it seems like Aubrey will be all caught up with how well she's been doing lately! Sorry you have to wait so long though!
Waiting is the worst. And unfortunately it doesn't stop. I wish I could tell you it gets easier, but about six months ago I wiated in a hematologists office for 2 and 1/2 hours before he came in and said they had nothing new from the tests. I have to say waiting for the doctors and their schedules is the worst part.
I don't know why anything to do with doctors is so frustrating. I'm so sorry for all the frustration. It's terrible. Good luck with the kid front. Do what you two feel is right. No one can tell you what to do or what is right. I know my step-sister and her husband had genetic testing because of the disease their son has. She always wanted another child, but her husband refused because of the results. He didn't want another child with the same problem. My sister has never gotten over that and it's been like 15 years. I'm not trying to scare you and I know you guys wouldn't let that testing determine how many children you'll have. I'm just sharing a similar experience in our family. Do what you guys feel is right, and you will be blessed. You two are fantastic parents. Bree is so lucky!
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