Everyone,Emily's CaringBridge Site


New Member
OOPS! I am not sure what happened there... Anyway, I know that I have not posted in a while. My difficult child is doind a lot better emotionally thanks to Zyprexa, but continues to decline medically, so we have been at the doctor a lot. I have started a caringbridge site for her so that I can reach out to other parents who may be experiencing similar things with their children. Please visit if you are interested.


We are still looking for answers, but realize that we may never be satisfied with the ones we get.



Mom? What's a difficult child?
Oh my gosh what a beauty!!! My little difficult child came up and said who is that pretty girl!!! I told her it was another princess like her...

You web site is wonderful I hope this brings help and answers for your family.

by the way- Emily is blessed with hair like mine!!! My 2.5 yo has hair that is very curly as well, not as much as ours yet... but I can not get her to let me brush it! Did Emily let you as a little girl??? We try everything, leave in conditioner etc... she screams !!! I am ready to cut it, :frown:

Thank you for sharing this with us!!!


New Member

Yes, she did when she was little, but it is a major struggle now. She can't do it herself, but it is too much to let me.

Television was a great distractor. Hold it at the top tightly, and it doesn't hurt as much. But we digress...

Thank you for your kind words.


New Member
<span style='font-size: 14pt'> <span style='font-family: Georgia'> <span style="color: #663366"> so i've bookmarked the site so i can follow.

you daughter is model beautiful. the site is very well done.

</span> </span> </span>

Stella Johnson

Active Member
I am a patient at the National Institutes of Health in Bethesda, MD. I have a very rare kidney disease. I thought I would look at their clinical trials for mitochondrial disease since it seemed to be pretty rare.

They have lots of clinical trials for this. The doctors there are awesome and the medical treatment is cutting edge.

Here is a link for what I found...

It might be an option for Emily. There is no cost for any of their research or treatments.

Let me know if you have any questions. If you decide to try it let me know. I have a wonderful geneticist there and he can help you get her in.



Well-Known Member
When I saw you had posted I hoped that there was good news bringing you back. Your site is great but don't be a stranger
around here! Hugs. DDD


New Member
Thank you everyone. I will definately check out the trials site.

I know it has been so long. I have been dealing with doctors and the school has been giving me grief. We have another IEP on the 13th to discuss options for the rest of the year as well as next year, which is Junior High!! Em is having a difficult time in the classroom environment with all the stimulation that goes on (especially at the end of the year!). Her teacher would like her to be able to remove herself when she is overstimulated. If only that were a possibility... Right now we are trying 30 minute breaks. She has been helping out other teachers with students that need help with reading. Wow, what a difference in her self-esteem. She has not felt this good about herself in a long time. Now if we could just get the drama at the school to a minimum (class teacher doesn't agree with the resource teacher!) I am trying to stay out of it while getting Emily what she needs. Like I don't have enough drama in my life!!

We seem to get better emotionally only to have medical decline, which is what has happened recently. Emily is now slurring her speech pretty badly at times. Her psychologist doesn't think its the medications though. She was doing it a little less frequently before the medications, but was doing it nonetheless.

Anyway, I am also working on an on-line baby product business my mom and I started last year. I'm in charge of running the site and working the search engines. Needless to say, taking time for myself has been at a minimum in the past months. I will make a point to be a more frequent visitor here though!



New Member
I wanted to thank everyone again for the thoughtful words. Emily is doing so well this week it is amazing. It think being out of school is a major part of it. She is pretty much stress free this week. I am letting her do whatever she wants to do (in regard to activities).

Thank you again,



New Member
The site is wonderfl and your daughter is so very pretty! I hope you do follow through at NIH i was going to take my difficult child there and had it all set up but he got into trouble and is not available and the study is now over. My easy child used to work for NIH they are terrific. -RM

Hound dog

Nana's are Beautiful

I've been wondering how you and Emily have been doing. I'm so glad you updated us. She truely is a beautiful girl. I've bookmarked the site so I can follow along.

As always, you and Emily are in my prayers.

Many Hugs