Tucker

Hello all! It has been a very long time since I have updated. Things have been going great and they always say "no news is good news" so we have finally got some answers to at least part of Tucker's condition. About a month ago tucker started to break out in a mysterious rash. It kept spreading and even blistered up and started to ooze. We visited our pediatrician and were in contact with our immunologist and gastroenterologist the whole time as well. We decided it was time for a dermatologist. Luckily my wonderful aunt happens to be a dermatologist so we went in to see her right away. After taking a look she told us it looked to be non contagious condition upon which he would break out in a rash after a virus (he had strep a week before that). It made sense and she gave us an oral steroid, antibiotic and steroid cream to use. We also switched to all unscented everything in our house. It helped to ease the itch and uncomfortable aspects but it was not going away. At that point she decided it was time for a biopsy. We took him in and I had to wait outside the room, I knew it was too much for me. I also knew he was in great hands and daddy was in there too. I got the results this week. Turns out he has an autoimmune disorder in which attacks his GI tract and skin. She said there were two course of treatment. One was a powerful medication that he would have to be blood tested for first and is something that would be hard on him at first. The second would be to switch tucker to all gluten free and see if that would heal this all. She said that would be her recommendation first if we were willing to change our whole family. We have of course decided to make that lifestyle change for our little boy. He has been through so much and if that's all we need to do we will do it! I cleaned out my entire pantry yesterday and did some gluten free shopping. It's amazing how many products are already gluten free! It's definitely going to be an adjustment especially for tucker but we are faithful that this will help! The biggest obstacle is going to be no more chick fil a fried nuggets and donuts, which are two of tucks faves:( but we will def find some alternatives, like grilled nuggets and French fries at chick fil a (yes, the fries are gluten free!!) with that being said, our dermatologist is going to talk with out immunologist and gastroenterologist about their thoughts. Our GI was doubtful this would explain all, but we will see. We go in to see our immunologist may 21st, when she gets back in town and hopefully she will have some insight as well. We are hopeful this condition will explain all and we can finally move on! Autoimmune runs rampant in our family and I kind of figured it would end up being one. 

As for tucker he is doing great and thriving!! He is so smart and friendly and cracks us up on a daily basis. I pray that one day this will all be behind us once and for all! It's a constant uphill battle but God has been so faithful to us and for that we have to be thankful!! 

Please continue to pray for our tucker and pray that this skin condition will go away soon! Pray that this transition to gluten free will not be so hard on him.

Thank you all for all your continued love and support! We are blessed by great family and friends!! Love you all!!

Love and blessings,

Traci

A VERY good day

On Wednesday we reached a big milestone! Tucker got his g-button removed!! It was such a wonderful day. The surgeon pretty much prepared us that his button may not heal on its own and that we would most likely have to plan surgery to close it. He told us to give it two weeks and if so call back and schedule. When we spoke with his nurse she told us to wait as long as we can because the surgery was pretty invasive. So we left feeling conflicted. On one hand his button was out, on the other we were thinking we need to prepare for surgery. The most important thing was that tucker has been healed and we were ready to celebrate our blessings!! And that we did! We had pizza, cake, champagne and some of our close family over to celebrate! My sister kelly even came over while we were gone to set up for me so it would be a complete surprise for tucker! He was so excited!! We had an Olaf themed celebration in his honor:) at the end of this post I will attach some pictures from the celebration! On the way home from Texas children's, tucker kept telling me "mom, my button all gone!" It was so sweet! 

I'm happy to report that it has been less than a week and his button seems to be closing up! We should know better than to be doubtful, God has been with us every step of the way and this step isn't any different! Please keep praying that it will continue to heal! It has been so nice not having to worry about "the button" and tucker even laid on his stomach the other day to play on his iPad and got so excited and said "mom, look!!" I started crying and didn't even realize little things like that. God is so good and we are thankful:) I can't help but wonder if Grammy had something to do with it;)

Words cannot express our gratitude for all the prayers, well wishes and all the help given to us over the past year and a half. It is in part because of all of you that we are here today. I wish I could personally hug each and every one of you! Just always remember prayer works!   Just look at our tucker if you are doubtful. We serve a loving and faithful God, never forget that!! Keep the faith especially in hard times:)

Ok here are some pictures:)

My Hero!!!!

Love and blessings,

Traci

BIG week

So this is the beginning of a big week for our family. Wednesday tucker has an appointment with his surgeon to get his button taken out! They simply pull it out and bandage it and most kids stomachs close on their own. However there are some whose stomachs do not and in that case will have to have surgery to stitch it up. We are praying the doctor will look and think his will close and not want to do surgery. We will find out Wednesday! Nonetheless, the button is coming out and we are nearing an end to our journey! It is going to be an emotional day for me as it is the last physical reminder of all we have been through the past year and a half. On Thursday we go back to Texas children's for a long awaited appointment with our immunologist. We are curious as to what they have to say given all his improvements. I will update with any news. As for Wednesday, we will be celebrating God's blessings with our families! I even ordered tucker an Olaf cake:) so excited!! 

This past weekend we went to Carl's family's annual Halloween bash! It was super fun and the boys ( I mean captain America and Olaf) had a blast!! Here are a few recent pics including some from this weekend. 

Please continue to keep tucker in your prayers!! We love you all!!

Love and blessings,

Traci

A good day

Today our precious tucker underwent his 6th and hopefully final endoscopy! He was such a trooper and even through tears waved at all the staff as they wheeled him to the procedure room:) anywho, the results were better than expected. Everything was clear, our doctor was completely baffled. It was no nice to see the pictures of nice pink lining (as weird as that sounds). He did have a few spots that looked like ulcers, but she wasn't too worried. She took biopsies to be sure and will let us know in a few days. The best news of all was that she gave us the all clear to call our surgeon and get his g button removed. This is the last step on the long journey we have been on. I felt like a weight had been lifted off my shoulders:) the day he gets it out will be a very emotional day for me but a good one. No one is certain that this will not come back since they still don't know what this is, but I have to remember who healed my baby. I have to remember that I have witnessed a healing miracle from our loving father! Amen! Thank you all for your thoughts and prayers along this journey. It has been a long and rough road but we have almost made it there! 

I am awaiting a call back from our surgeon to set up an appointment. That day we will definitely be having a huge celebration and praising God! 

We go to see our immunologist on October 30th and are eager to see what they have to say. He is currently a part of 2 different research studies in hopes of finding a diagnosis. Until then we are so happy with how things are going now. God has truly blessed us. We hada rely rough year and a half but things are looking up! 

Again, thank you for all your thoughts and prayers!! We felt every one.

Of course we had to stop at target for a few treats after the rough morning:) thanks to yaya for buying him his new Olaf sheets!

Thanks for stopping by! Have a blessed week all! I will update again soon!

Love and blessings,

Traci

I'm back!

It has been a long time since I've updated my blog! Really things have been going great and we have been super busy!! God has really blessed us this past year and we are so happy to have finally had a good year! I don't even know where to begin:) first of all, tucker is doing so well and has even started Mother's Day out two days a week! I can remember this time last year thinking that would never be possible, praise God! The doctors are still baffled and tuck has even been signed up for two different research studies in hopes of finding a diagnosis. He is doing so well but the fear is that they don't know what caused it all and could it happen again. I have to remember who healed my baby! God is so good and our faith and testimony are stronger than ever:) tucker still has his g-button in his belly, he has his 6th endoscopy this Wednesday and as long as the inflammation has not gotten worse the doctor will be comfortable taking the button out. So that is our prayer! We will definitely be celebrating the day that button comes out, the last and final reminder of what our poor guy has been through! I will update my blog once I know more on that:)

Tripp has been doing great and started pre-k at trinity this year. He is such a sweet hearted and smart little boy! He looks just like his daddy! He is such a joy in our lives:)

On another note, we bought a house and have been renovating! It was hard moving off of Schindewolf lane, but it was the right step for us and we go back ALL the time! It is so nice having so much more room and a pool in our backyard! Carl has been working hard since we closed at the end of June. We moved in Labor Day weekend and are still trying to finish up. We have come a long way! I will post before and after pictures after we are done:) 

That is all I will update on for now:) I am going to try and start blogging regularly again:) here are a few recent pictures. 

Thanks for stopping by! Hope all have a blessed week!!

Love and blessings,

Traci

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,

Traci

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,

Traci