Monday, July 2, 2007

not much happening

The past week has been bad, and to top it off, no art time for me.
To sum it up-all last week basically took my time going to appointments for Gillian to get her back on a service that offers her more resources for help. Psych eval, different assessments and for me, heartache. Psych evals are ALWAYS purely awful. To make matters worse, they told me they were going to give her an IQ test-to test for mental retardation. Oh Joy. Yes, I know that doesn't mean she HAS it, but the possibility of it, along with it destroying my dreams for her, its heart wrenching. They ended up qualifying her, but I am not sure under what basis. She already had the diagnosis of Autism, although high functioning, but I am not sure what they put down. They were VERY difficult and asked some very intrusive questions. It really caused me alot of anxiety. Now we are dealing with another possibility :Hearing Loss. She had it early on in her life, but a few years back it seemed to resolve itself. Now we are noticing little things that lead us to believe she may have it again. And, being a former 23 weeker its VERY possible.
With all the NICU time spent, oodles of meds, and ear infections she has had (quite a few) its a strong possibility. I don't think its a severe hearing loss, but I think there is some. Alot of this I seriously thought was due to her sensory issues. Now we are not so sure-I noticed when the teacher called her last week she did not respond, and he called her a couple times. He has noticed that, as well as the helpers in the class room. So that leads me to believe its more than just sensory issues. Today I am taking her to her reg pediatrician for a hearing test to check-I do hope she cooperates. Later this month we have an appt to an audiologist and an ENT doctor as well. I just want all my bases covered. This time I am not overly stressed about this one-I have just come to the conclusion this preemie journey is never going to end.
I have suffered a headache for over 24 hours-actually now close to 48 hours. Its pretty mild at the moment, and I hope it goes away, but its been miserable enough to not want to do much of anything. Its probably a combination of lack of sleep (quite a few sleepless nights) and caffeine withdrawl. I have got to give up this pepsi! I am not sure if this is a good time to be weaning off the pepsi, but its something thats been bothering me-I am SO addicted to it. I hate that!


Anonymous said...

Kristy, I knew some things were bothering you as you have been so quiet. Bless your heart. I know it must be hard to hear the things you are hearing. No parent wants to hear bad things about their child. I just know that you are doing all you can to help Gillian and it will all work out. Don't give up on your dreams for Gillian just have to change them a bit. With the love you give her she will accomplish a lot. I hope your headache goes away soon...that must make the days seem worse. Hang in there! You are always in my prayers.

Nancy Ward said...

You are all in my prayers. I can only imagine how difficult these days are. But that little sweetie will continue to surpass everyone's she has from the day she was born.

Darlene said...

Just wanted to send hugs to you!

Anonymous said...

Dear Kristy: I only know you through the world of blogging and fate has brought me to your post. I read and read and read and felt and felt and felt since you wrote from the heart and gut. I know very little about the whole picture but what I read touched me so much since we sometimes tend to feel self pity for the silliest things (I'm referring to me) when you should be more of a concern. I have a small health food suggestion for the autism. More and more children are being born with autism and there is some evidence now that it is due to Vitamin D deficiency in the parent(s). Milk not being what it used to be due to how cows are fed nowadays means we must turn to fishoil (The Zone has great fishoil) which is rich in Omega 3 oils. I know this is a pittance of a support but you all might want to try it. The main point I want to communicate is that my heart has now one more golden thread to a Soul Sista. And as for the Pepsi withdrawal, try Arizona Iced Tea Lemon flavored, it is so refreshing or limeade cheap at the supermarket in the frozen cans. Pour into a large glass jar and slice some real lime slices into it, chill and enjoy. Well, this is the best I can do for now as far as Chicken Soup for your Soul. I will say a little prayer for you this evening before I tuck myself to sleep. A big, warm, tight hug, Constanza (

Anonymous said...

Hi. My name is Lara Berch. I have just launched a new website with step by step art tutorials. I was wondering if it's possible to exchange links with you.
Thank you very much for your time.

belinda said...

oh boy, i need to get off coke, or rather should. not that i want to, but i'm with you. hope you'll soon feel better. might be the weather also? but with all these worries, no wonder!