Wednesday, June 18, 2014

Tucker update

Last week we went to Tucker's GI doctor.  She was a bit stumped at the results of the whole xsome study. But since he is doing so well she has decided to take him off the medication we have been giving him for his inflammation in his duodenum. She wants to do this for about 3 months until she sees him again in September. At that point if he seems to be doing ok they will probably schedule one more endoscopy to check the inflammation. (In the past he seemed to be doing fine and after the endoscopy we would be surprised to see that his inflammation had gotten worse). If the inflammation has not gotten worse without the medication, then she would feel comfortable removing his button. I asked her once more if she thought this was something he outgrew and she said no. She was concerned about the duodenum and inflammation that has no explanation. Again, we know who the ultimate healer is, but my human tendency is to worry a little:/

We also saw our genetics specialist this past week. He was surprised by the results of the test. We spent about an hour talking to him about everything. He is very in depth and had a lot of information. In a nut shell, our only option there is to request an expanded version of the test. They may be able to look further into it and see if there is anything else that may help explain his sickness. It's a far stretch. We are waiting to see our immunologist in July who is kind of the head of our case. It sounds like she wants to do research. She has me trying to obtain his DNA sample from the lab so they can have it in their possession. So once we speak with her we will find out what the next step is. I am honestly not as worried about him as before. It is frustrating not having an answer, with the fear of him slipping back into that bad place again. But I feel like God has given me peace in my heart. I am not worried like I was before. I do get stressed after speaking with the doctors because they want an answer. All of doctors have been wonderful. We have been blessed. Overall, I am just so happy to see my healthy and happy little boy running around with his brother. And as crazy as he drives me, I'm happy that he is a normal little boy going through his terrible twos! 

Again we thank everyone who has been praying for our baby. We serve a loving and faithful God. We are thankful for our baby. We do not know what the future holds, but we do know who holds our future. I will continue to update my blog with any new information. 

Hope all have a blessed weekend!

Here are a few pictures of the boys and the summer fun we have been having!

Thanks for stopping by!

Love and blessings,

1 comment:

  1. Hi Traci -

    I was just looking for 'Schindewolf' outside of Connecticut and found your blog - just curious, what state are you guys in?

    -Shauna Smith Schindewolf


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