Tuesday, October 20, 2009

Failure to Thrive

Warning: The following post is more of a therapy session for myself than a post letting everyone in bloggy land, who too have grown fond of my son, know the results of today's doctor's visit. However, if you are game to join my therapy session continue onward with post.

Going to the doctor today, I kind of set myself up for disappointment. I was convinced that since he had gained weight that I had fixed the problem. So when the doctor walked into the room these were my enthusastic words, "He's gained two pounds in 5 weeks, I am here for you to tell me that his test results are all normal!" Her exact words, "I wish they were!" I think all the blood drained from my freckled face at that moment in time.

What happened next I know all too well, but instead this time I was on the other end. As an educator of children with special needs I know the routine. First, you tell the parents all the positive things about their child and then you gently let them know their delays or areas of concerns.

She proceeds to tell me as she is bringing the computer screen closer to me "Well, let's sit down and go over these results together." She shows me all the areas of the tests that looked good. In fact, he is no longer anemic. He doesn't have Thalassemia, Cystic Fibrous, Celiacs or any of the other things she wanted to rule out. Then she went to the test that showed his bone age. Bryson is more than 2 standard deviations off his bone age. This would not be such a big deal if he was a pre-teen or teenager because for older children that just means they are going to grow more later. However, for Bryson at his age and such a deviation it most likely means that something more is wrong, especially since his growth hormone test and thyroid test were within normal limits.

As soon as she got the test results, she put our referral in to see the endocrinologist. So we should be getting an appt time soon. She wouldn't discuss what it could be. She said that was the job of the specialist and that there are too many things it could be for her to try and guess.

She put a positive spin on it by saying, "At least we are narrowing down his failure to thrive." Have I told you how much I don't like that term? It just doesn't seem right for my son who has so much life, resilience and spunk! I guess I take it personal, like I am not doing something right for him to still be labeled "failure to thrive!"

We left there with me being sad that there is just one more thing that makes life harder for Mr. B. I am sure he sensed it through my plastic smile.

But only as he can do, he brought laughter to my heart as we passed through the swine infected waiting room. He tapped both of my mammaries and said, "Mama, why do you have two babies in your tummy?" I laughed and said, "Bryson those are not babies." He said, "What are they?"

"My mammies son, my mammies!"


Karen said...

So sorry for the news. I pray the specialist has positive news.

Love Bryson's positive attitude and sense of humor. He is one amazing little boy!

Anonymous said...

Well I guess I can say it is good news that he does not have CF or the other things but also concerned for the Endo visit. Who knows that it is possible that whatever if anything it can be treated with a few little meds and nothing more of it. I hope if it is something it is just that easy.

I am not sure I could handle hearing the Failure to thrive comments either. Seems like once a person is given that diagnosis it is very hard to loose it. However, since he no longer has diarrhea all the time and has more normal stools it is possible he could start gaining more weight and loose that diagnosis all together. After all gaining 2 lbs is a lot better than loosing 2lbs.

I will be praying for both of you and thanks for keeping us posted.


Anonymous said...

Just read your eyes and your blog...hope my eyes told you how much I love you and they have cried but they are filled with hope also...Our god can move mountains and so can Bryson with his spirit!! It is an amazing journey and I am honored to ride this part with you guys!! thankful...I am filled by the spirit flowing from your special boy...and your family. Thank you....

Nancyh said...

Now you have a direction and as you continue to put one foot in front of the other on this blessed journey with the precious Mr. B you will continue to do the BEST for him as you always have. Thank goodness for his sense of humor and delight knowing just when his Momma needs a good laugh! Bottom line though he did gain 2 lbs. and that is a good thing. Great job MOM!!
Positive thoughts and prayers

Melody said...

I can't imagine what you're going through with all of this. Even for those of us on the outside, we see how truly happy he is and all the progress he's making, that it seems impossible that he's not "thriving". I'm so sorry. ((hugs))

But I loved your mammies joke! ;)

Mom Of Many said...

I write thru tears sweet friend. When I got your text yesterday my heart sank. It is difficult to put into words...but I feel like Mr. B is a VT of my son...and so what happens with him, I am feeling for I and for all of those affected by Arthrogryposis. My heart grieves at how painful and difficult life is for some. And yet our boys have such great attitudes...then I can think of some peers of my kids who are such little twirps (forgive me, I'm just using this for my therapy session)...and they have no handicap, except their ornery, snotty personality...and I just want to scream....doesn't feel fair ya' know?

I am thankful that we only have to take one day at a time and that the Lord goes before us and that He is working for our boys good and our good...and one day we will dance and run in heaven with our boys who will be perfected!!

*tears dripping*

Love you girlfriend and praying for grace and wisdom for the new doc!! xo

Ann said...

Interesting about the bone scan. We have had several done on our now 11 yo and the endocrinologist is always disappointed they DON'T show a delay! His first one was done at age six. Our son is VERY small--at 11 same size as our 7 yo. He has simply been labeled ISS--ideopathic short stature--no known medical reason for his small size.
Also, it is very difficult to measure growth hormone as I'm sure you will hear from the endocrinologist. Yes, a blood test can give markers but to really measure it the child has to have blood drawn over and over through-out the day and even then, the test is not very accurate. The bone age ties in to that too so maybe you will get some good answers from the endocrinologist.

In the meantime--it sounds like he has gained some weight so keep doing what you're doing! And yes, he is obviously THRIVING!!! Doctors def. need to come up with another label for FTT.

Jean said...

Sally- I can feel your heavy heart all the way to MN. I am so sorry that it was not something simple. It is so hard not knowing...

I read Ann's response and she seems very knowledgeable on the topic. I do not like the FTT label either- it just isn't the correct label in this situation. Plus he couldn't have gotten better care - for the last 10.5 months he has had all the TLC a child could ever hope for!

God Bless you all on this difficult journey. I'll keep praying for all of you.

K said...

Okay, the unknown always looks grim, the final prognosis could be grim. But for right now, I am another one praying for Bryson and all of your family. I am also elated and over the moon that he has gained TWO whole pounds in just a few weeks!!! No matter what the prognosis is, he still needs nutrition to grow, however much he will, and to be strong and healthy. Without proper nutrition, he will not respond well to any treatment, so even in this storm, take comfort in this umbrella you've placed over Bryson. The medical system in America is 14th of all industrialized nations and two of the major reasons are a failure to treat the whole body and mind and to have doctors who are the most ignorant about nutrition, so much so that in medical school our doctors are not required to take even one course in basic nutrition.

I am not being overly optimistic; I wouldn't hurt you that way. I am very sorry, too, that Bryson continues to need medical care. I'm sorry he's had to endure so much in his short little life already, but I'm so glad you are his mom and that you are giving him the BEST chance for health that he can ever have. You are in my prayers, too, that you will have strength and comfort as you continue to research and provide what is best for your family and especially for Bryson.

Anonymous said...

Oh, I'm so sad. But I think it's good that you can connect with an endocrinologist. I'm still praying for you all every day.


Christine said...

Wow Sally, I am sorry. With all that is happening, I would love to chat on the phone sometime. Can I call you. WE just had x-rays of Alex's hips and one definitely looks like it is out of its socket.

a Tonggu Momma said...

Oh, I felt this same way when we were fighting off a failure to thrive diagnosis with our Tongginator. Her issues dealt primarily with malnutrition and the fact that she (most probably) was born prematurely. But I hated it when they referred to her that way because she was (and still is) so full of life. Hugs to you while you wait.

Stefanie said...

Wow, we are at this same spot, too!! It must have been to hear the news that you weren't expecting to hear... I will pray for you and for your precious Bryson!
Love how he was able to make you smile, that was funny stuff :)