Wednesday, May 13, 2009

Okay

Okay, so I am feeling a bit emotional! The good news is we met with the geneticist yesterday and Courtney does not appear to have any type of syndrome. She is growing and progressing normally and we just need to continue working on her speech and listening skills. There is one genetic test we can do which is for a mutation in the Connexin 30 gene. More than likely we will do this blood test to see if that is the cause of her hearing impairment. Other than that we are thankful that she is a healthy beautiful little girl!

There really isn't any bad news other than this overwhelming feeling of mommy guilt I hold. Most of the time I feel like Courtney is doing great, but then I wonder if she would say more than her few words if I worked with her more. I get all crazy in my head with so many strategies that maybe I am not focusing enough on the correct ones? We narrate everything, I am sure I could read more, I haven't pulled out the animals in a while, but we do work on, up, down, open, close, on, off ALL of the time, and of course the Ling sounds. She can hear things that I never thought she would, but then she doesn't reflect that in the sound booth?!

Am I not working with her enough? It seems on the days I am supposed to work with her (Tuesdays and Thursdays) they become errand and appointment days and we really don't get any good quiet time in. Oh I feel torn. I know deep down she is doing well, but I would be lying if I said I didn't get a small pang inside when I see other hearing children her age and she is behind. Even her stinkin' teeth are behind! Almost 20 months and only one tooth!

Okay....... I am okay, I just needed to get it out.

6 comments:

Lisa said...

I think this goes back to the Mommy guilt cloud we've all talked so much about. Yes, you could probably do more in a theoretical world where you weren't also raising two boys, running a business, being a wife, etc., but even then you would also need to give Courtney time to be a little girl. She needs time when she isn't working to listen to the world and play which stimulates learning too. You've already done the very best thing for her by identifying the hearing loss so early and aggressively working to get her the CIs, so she could start learning language and hearing. It will take time for her to catch up, but she is healthy and strong and she definitely will. If her mama is any indication, she will be a force to be reckoned with. Love you both!

Val said...

we spent years in genetics labs...we knew my son had a syndrome but no one knew exactly what, three "syndromes later" he received his proper fit at age six w/ Goldenhar Syndrome. Syndromes are tough, there's so much that has to be tested, glad she doesn't have to go thru ALL of that, it can take years....best of luck, y'all have a beautiful family.

britni said...

Oh Karen you are a GREAT mom! I can't imagine at all how you do it. Courtney will be fine and she will catch up..don't worry. It is totally normal that you do though. We need to get together sometime...we miss hanging out with yall!

Melissa said...

you are being WAY too hard on your self. i am sure if I saw you on a daily basis... I am sure I would think that you are the best mom ever to her and the boys. I have always thought that you have so much knowledge and insight. As Lisa said... she will learn, but its good for her to have "child-free" time. You gave her the best gift a mother- or anyone could ever give their child. Dont be so hard on yourself. Your a great mom.

tammy said...

I love getting it all out through my blog. I think it's important for other's starting this journey to realize, some days (sometimes weeks) are hard or just suck. This is not an easy journey. I also love being part of a community of mommies who have been there done that and provide that support. I feel the same way you do and with older kids and constant running, it's hard to find time every.single.day to just sit and have "therapy" time without losing OUR minds. I voiced my concern to my audiologist and she said my job is to be his mom first and by being his mom and talking to him I am giving him constant therapy ... so he hears a lot of "open" and "close" because we're constantly opening and closing doors and "up" and "down" and "bye-bye". I also brought it up to our therapist that he just isn't vocal like I thought he should be ... he does a lot of moaning and "mm" sounds that are driving me crazy! She reminded me that hearing kids are just starting to put words together at 12 mths - ONE WHOLE YEAR of listening. So I have to remind myself, even though Aiden is 14 mths and I'm expecting ma-ma's and dadas, that he's really only had 2 mths of listening. UGH. It's hard, but of course it's all worth it.

Hang in there. My thoughts are with you.

susannah said...

yes- i agree so much with what tammy said. it is SOOOO frustrating (and i hear you on even being behind with the teeth!!! monrovia's little friends who are 6 months old have more teeth than she does!). our therapist has reminded me so many times that most of teh time they will plateau for a long time and then explode with language, and then plateau for a long time and explode...yetserday a little girl who is 1 month older than monrovia came over and was talking away and understanding SOOO many words! it was killing me- i had to keep reminding myself that i am doing what i can do, and that my daughter will be there someday...