Friday, May 9, 2008

Update...

So - let me start with an "I'm Sorry" for not posting sooner. I know I have some explaining to do (see below) but I want to say that we have purposely kept some of the things we have been struggling with from this blog as we wanted to have some answers first and have struggled to talk about it with even those closest to us.



A few weeks ago we took Brady in to meet with his pediatrician as he was (and still is) to be frank - pooping...a lot - literally 6-10 times a day - really, every time after he eats. We ran a lot more tests and then had one of those doctor and patient moments you see on tv (where the doctor says he needs to tell you something and sits behind a desk). Initially it appeared that Brady had Cystic Fibrosis - very scarey since we had not of course been treating this. We went to Fargo to have some testing done for a couple days and then had some other bloodwork tested at the Mayo clinic in addittion to our clinic here. We were talked to by doctors and specialists about what this may mean - including discussions about how long we should expect him to live! This was clearly very difficult for us - we relived a time in our lives when we were told our daugthter may not make it only days after her birth. It was a very emotional month and I am very happy to say we now have the test results and they are negative. Unfortunately however we still have no answers about why Brady is LOOSING weight! This has been troubling to our pediatrican and of course to us as he is now only 19 pounds at almost two - almost 2 pounds lighter since we brought him home! He is eating, we cook him seperate meals that are full of fat and protein but have had no luck. We were back into the clinic a couple of days ago and they are doing another round of tests (some of them for the third time). Our poor little man doesn't even flinch anymore when they bring that needle out.

So - that is our Brady update (medically anyway). He is otherwise well -a very happy little guy full of energy. I promise to update the blog more often. Until recently I could hardly talk about this without breaking down and sobbing. I knew once we posted this we opened ourselves up to questions and I have struggled to make it though a workday so did not feel I could quite handle that.

13 comments:

Becky and Keith said...

Oh Amy!! I am so sorry to hear about everything you've been going through. Poor little Brady! I am so glad to hear that the cystic fibrosis was negative. As much as I know that was awesome news, I'm sure you just want an answer. Have they tested him for Celiac disease (allergy to gluten I think? I just read about it on Chris and Danica's blog as one of their girls was just diagnosed with it - if you need the link, let me know). If you need to talk or I can do anything, please just let me know! I'll be thinking about you guys!

Hugs -
Becky

P.S. Love the pictures in the header!!! Too cute! :-)

Anonymous said...

I am a grandma to a new sweet little boy from Russia and while reading his updated blog happened onto yours. I felt compelled to ask if your son has been checked for celiac disease. This is when your body cannot tolerate any gluten and it can be treated with diet. His symptoms seem like this may be a possibility. Also dermatitis goes along with this disease. I have a good friend who has this disease and now one of her grandson's has just been diagnosed. He is now on a gluten free diet and is thriving. Check out some websites. Perhaps your doctor has already checked this out but I felt compelled to send this to you - you know how Grandma's are. I'll be thinking of you and your beautiful family.

Troy and Rachel said...

Amy - What a trying time and it sounds like you are handling it very well - as any mother would. I am so glad it is not cystic fibrosis. I would also have him checked for the Celiac disease. I'll be praying for a diagnosis that is treatable. Please call or email me anytime. Glad you updated - we are all here for you.

Patti said...

Amy, I cannot imagine how hard this has been for you and your family. I hope that you get more answers from the additional tests. You have been on my mind a lot lately, and now I will turn those thoughts to more specific prayers.

Aaron & Dana Craven said...

Your family is in our prayers. I can't imagine how you have felt. I'm so glad to hear cystic fibrosis was negative. I will keep praying you get answers soon. I know this must be very hard not knowing.

MandyJo013078 said...

Amy-
I wish I could give you a big huge HUG! I'm sorry to hear about Brady still loosing weight. I am glad to hear that it's not cystic fibrosis. I'm keeping you guys in my prayers. I originally checked your blog to come and wish you a Happy Mother's day! I hope you do have a wonderful mother's day and I hope that a resolution is near with Brady!
Mandy

Shane & Marie said...

I am so sorry to hear this Amy. I pray that they find out what is wrong with Brady soon!

Joy said...

Amy,
I could not be happier that it is not cystic fibrosis. I am sure that everyone who reads you blog understands that it is difficult to post about the things that you are dealing with. I wish only the best for you and your family. I will keep you all in my thoughts and prayers.
Joy

Carey and Norman said...

I'm so sorry to hear that Brady has been sick. I can only imagine how hard it has been on you. Especially concerning the original diagnosis. We will keep you in our prayers for the doctor's to determine what is wrong with Brady. Poor little guy. He is so sweet and adorable and I feel so bad that he is going through all this testing so soon after coming home. I know how hard this must be on mom and dad too. You poor things.

Many blessings and lots of love coming your way!

Michael and Carrie said...

I'm so sorry to hear what you all have been going through. Poor little Brady! I'm so glad it is not CF, and I hope they can determine what is going on and help him to gain weight. I will keep Brady and your family in my prayers.

Adrienne and Jim said...

Oh, Amy, I am sick inside just imagining all you have been going through. It is wonderful to hear Brady doesn't have CF, and I too would recommend testing for Celiac Disease. Another question...does he have the poopy diapers after foods without a lot of fat and protein too or just with the high fat and protein ones?

I will be thinking about you, and I pray you get some answers very soon so that Brady will start gaining weight.

I wish I could give you a big hug! Please know you're not alone and to reach out to any and all of us at anytime. Although we may not have been through exactly what you are, we've been through other challenging, exhausting, want to just stay in bed and cry times and are hear to listen :)
Adrienne

Mark and Sinziana said...

Amy, too sad to found out about what you guys have been going through. Our son Diego, who we adopted 2 months ago, is also pretty small and helping him gaining weight is a big thing and concern for us. Have you guys considered Biomedical treatment? Sometimes they found some imbalance in the body chemistry and the presence/abscence of yiest, etc that can cause trouble digesting certain food. I know biomedical treatment is now more used for autism (I know because of my niece), but in general, it can detect intolerances to gluten, and other commonly found substances in the food. Just my two cents.

You are in our prayers!
Sinziana

Raphael said...

i don't know if you'll see this comment since i am posting so many months after you...but my cousins had a condition called Leigh's syndrome. it's a mitochondrial disorder where they cannot absorb the nutrients in food. i pray that Brady doesn't have this, but i didn't think it could hurt to mention it.