Answering comment day

Jennifer said:
I hope you get some answers soon. Remember, this won't change the Amanda you love!!

Jennifer, absolutely, she is still our same special girl, but we will be better equipped to help her with all her needs, and know how to protect her as well.

traceylynndel said...
You are right to find out all you can. Better to know too much about something you don't need than find out you don't know enough. It also enables you to ask the doctor intelligent questions once you do find exactly what she has. I'll continue praying for sweet Amanda and her family too.

I know that forewarned is forearmed. Thank you for your prayers, we have not heard about her referral yet, it is time to call the doctors office.

carol said...
Kris, I am so glad that you have the access to the internet so you can search. Amanda is very lucky to have a mom that is such a good medical detective. I hope you find all of the information you need. Good luck Kris. I wish there were more people like you out there that take the time to find answers to their problems. We cant always leave it up to our Drs. as the dont always have the time or energy it takes in finding all of the information needed.GOOD LUCK

Carol, thank you for always supporting me and my family

Christina said...
Kris,I can relate to the frustration you are going through. It reminds me of our experiences with our son. It seemed like every time we saw another specialist, they found something else wrong! I started to feel like there was some form they were trying to "check" every box on! It never fails, whenever I hear the words "odd are your son does not have this/that", from a physician, I know to get ready, prepare, and reasearch because "odd are" he WILL end up with it. I know it can be frustrating, but you are being a great mommy to Amanda, and doing the right thing to reasearch and be prepared. I will be praying for you and your sweet baby girl!
S.P.S. I love the pic of Amanda at the top of your blog -- is that a new one?

Christina, exactly, I feel the same way about sweet Amanda, the dentist, the heart doctor, the eye doctor, at least her hearing was normal. I am almost afraid to take her to another specialist, what will they tell me about her?

The picture of her is new, yes, I love it too!

WheresMyAngels said...
Never heard of this. Also has she been tested for celiac's, that could cause weight issues. Mercede was always a very thin child. Her heart was part of the problem but she also has a very high metabolism because she eats more than all my kids.Prayers that you get some answers.

She has not seen the GI doc yet and I know they did not test her blood for Celiac, she does not eat any wheat products, so the test would not be accurate anyway. I guess after she can chew and eat breads, we can test her for Celiac.

deanie said...
Kris, your family is always in our prayers. Amanda is such a precious Angel and has so much to teach the world. We are praying that her problems are not life-threatening and that God cradles you all as Amanda goes through these tough times.

Thank you Deanie, she truly is a very special little light in this world. She is beginning to giggle and interact more and come out of her funk (depression from being in a new home is likely) She does continue to exhibit autistic behaviors, but at least she is coming to us for love and attention. As long as she will be OK despite all her special health issues, then I am OK too, the main thing I am concerned about is the Wilm's tumor, if she has it, or is she susceptible to it.

GoldenAngelsWorks said...
Prayers for our dear Amanda... Poor little thing just keeps having more added to her....I pray for the best outcome on this... I pray also for your family to receive comfort and peace that God is in control and knows what is going on.

Thank you Dawn, I know with prayer she can be OK.

Randy and Sheila said...
I don't have this condition but the eye dr is always saying that my pupils react too slow...I got to wear sunglasses at school and thought I was the coolest! I hope it turns out to be just an inconvenience for her too.

I hope so too Sheila, that would be the best case scenario for her.