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,

Wednesday, June 11, 2014

Long awaited results

We have been so busy living life that I haven't had a chance to update my blog. I am going to try and get better with it again and I cannot think of a better way to start than with good news on tucker.

We got a call yesterday with results of the whole xsome study we have been waiting 7 months for. It was basically the last ditch effort in finding a diagnosis for tucker. Well in a nutshell they did not find anything. Which is amazing! However it is a bit unsettling wondering what caused all that he went through. We meet with our GI doc tomorrow and are anxious to see what she thinks and what she wants to do about his g-button, whether she wants to keep it in until we meet with our immunologist or until she does another endoscopy to check on his inflammation. We will find out tomorrow. Our immunologist admitted that she really doesn't know what direction to go at this point. She wants to see us in a few weeks to discuss a new game plan and wants me to obtain his DNA from the lab for them to be able to use for possible research and such. Again, we will find out when we talk with her. In the past few months tucker has been dismissed by 2 other specialists we have been seeing (endocrinology and hematology), since he has been doing so well! It has truly been an answer to prayer. Speaking of, as puzzling as it is to the doctors who need definitive answers I have to keep reminding myself that God has healed my baby. We have always been strong believers in the power of prayer and are even more so now. We could literally feel the prayers around us and our son. Sometimes it's hard to trust that He will be ok and not slip back into those bad times, I guess that's why it's called "faith". We have it, just hard when it's your baby. The doctors have all told me at one time or another that this is not something he will grow out of, however he seems to be doing just that. He is mighty and powerful and has healed my baby. I believe it in my heart, just have to convince my doubtful head;) 

With that being said I will definitely be updating my blog with all the info we will get in the coming month. We also want to extend our gratitude to those who have lifted us and our precious tucker in prayer and for all who have loved and supported us along the way. Those were some really dark days but thanks to all of you we made it through! Please continue to pray for tucker as we hopefully near the end of our journey. 

I will end with a few recent pictures of our boys.

Will update again soon. Hope all have a blessed week!

Love and blessings,

It's a yes!

It's a yes!
how it all began...