Thursday, June 17, 2010

Where We Are

First of all, I want to apologize. I am sorry my last two posts have been about my child and his pottying. I am sure that most of you do not care about this and probably find it a little strange. In my defense though, a lot of the things I post are simply so that I will remember them. So again, I do apologize for the abundance of quotes from my children and strange stories of their behavior.

Now, I have been debating for some time on posting anything about what we are currently dealing with. In part because, it is just a lot to explain. In part because, I am not sure what the reactions will be and in part because it just makes it more real. But I am to the point now where I am desperate. I need support, advice and prayers.

Ben, my youngest, is 2. He will be 3 in October. When he was about a year old I began to worry about his development. I did not feel he was where he should have been in many areas. I contacted Tennessee's early intervention system (TEIS). They came to the house and tested Ben to find out what services, if any, he needed. While, TEIS was doing their thing, he was diagnosed by our pediatrician as "failure to thrive". This is a blanket diagnose basically means that for some reason he is not thriving. With the onset of this diagnoses, we were sent for lots of tests. He was tested for cystic fibrosis, genetic disorders, heart problems and we saw and endocrinologist. All the tests came back negative and he was cleared by all the doctors except the endocrinologist. We would see him again in 3 months. We also received the results from the TEIS tests. He had delays in his fine and gross motor skills and speech. The delays were significant enough to qualify him for services. Then when I mentioned his diagnoses, I found that this alone would qualify him services from TEIS. He started with them. A teacher started coming to our house one day a week and Ben started going to feeding group once a week. With the help of his wonderful teachers and OT he is now almost completely caught up in all areas. However, he is not growing. We have watched him slide from the tenth percentile down to the third right off the chart.

In November, we saw the endocrinologist. He was put on medication to increase his appetite. It was a fight to get him to take it. It did not work. With the Dr.'s Okay, we stopped using it. He did gain almost a pound from November to his follow up in March. We were all thrilled. We went back for another appointment on Monday. He lost 1.6 pounds. My two year old now ways 20.0 pounds. He weighs less now than he did in November. We have exhausted all options. He just will not take in enough calories. For some reason, he doesn't eat. He never has been a great eater but now it is terrible. So, with all things taken into consideration, we are looking into a feeding tube.

I realize that this is an extreme measure. But, we are to the point we are out of options. He can't continue to lose weight. He has got to grow. It is not healthy for a child to lose weight like this. He is in 12 month clothes, the same 12 month clothes as last summer. I am tired of fighting about eating with him. I am tired of going days where he eats a few crackers and dip. I need help. From what I have researched, in cases like Ben's, once the child catches up they take off and have no further problems. He needs to gain at least 10 pounds and I don't see that happening without outside help. My thought now, is that we just need to do what we have to do. I feel like it will only get harder the older and further behind he gets.

I realize this is a super long post and if you have made it to the end, thank you for reading. I just ask that you pray whatever needs to be done will be done and that it will be successful. Please know that my child is perfectly fine in every other way. He is as funny as he can be. His personality is huge. He plays and laughs. He loves dirt and lawn mowers. He just isn't growing. I am not posting this for sympathy. I know that this is very minor compared to what some people are facing with their children. I realize that many of you will read this and think, is that all. I know that many of have faced, are facing or know someone who has been through much worse. This is just a big part of my life right now and I just really needed to share what is going on in our lives.

6 comments:

  1. My niece was diagnosed with failure to thrive too. Im so sorry that your having to go through this...I cant even imagine! Its so hard as a mom to see your little one not feeling right. Ill be praying for you and Ben!

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  2. If a feeding tube is what you have to do then by all means do it. Maybe it will be the jump start that he needs to start gaining. We will keep ya'll in our prayers. I know it is hard to see your child struggle.

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  3. First of all, I love the quotes and silly stories. They are hilarious and I literally laugh out loud when I read them. So keep them coming.

    Second, and much more importantly, I will keep Ben and you in my prayers. He's such an adorable little guy. You should definitely do what you think is best for him. In the long run, I know it's hard to see it now, but I'm sure he will grow and thrive in every way you want him to.

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  4. You and Ben are in my prayers and nobody thinks your posting sympathy postt let me know please if u ever need anything I might not know much about it but I'm hear as a friend. keep us updated.

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  5. Don't apologize for your posts about your boys. I read them most days and say to myself... " I am so glad it is not just my boys!" I am so sorry for all the stress you have been through with Ben and his eating. I will keep you both in my prayers. Keep us updated so we can see God answering our prayers and rejoice with you!

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  6. You are such an amazing mom!!!

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