Genetics

Today we had our appointment with the genetics doctor. We have been anxious to see what he had to say and how he would weigh in on all that has been developing with tucker. It was a bit of an information overload and to be honest, my head is still spinning. I will do my best to compress the info and give the "gist of it".

He asked a lot of questions about development and what was being done so far. He also spent some time going over Tucker's chart and see what had been done. He told us he wasn't completely convinced he has the genetic disorder the immunologists are screening for, however the lengths they are going to find out suggests to him that they really must believe it to be that and they would know more from that standpoint. However, if all of the tests come back normal even after being sent to the national institute of health, he would like to do a new genetics test (not sure the name, something like whole xsome) which would basically screen the entire 23 chromosomes and look for and detect any abnormalities. They then match it up with any symptoms and traits he has and come up with a list of possible disorders and such it could be. Apparently this is a big test with some big decisions. First of all, it requires pre approval from the insurance company and some will not cover it. The genetics counselor suggested we wait for pre-approval until after all of the other tests come back. If they are normal, then the doctor has a better argument in that this would be the only way they could possibly diagnose tucker. He said along with finding these possibilities out, we may also find out a lot of other things that we aren't looking for. Like for example, since Carl's mom and her family carry the BRCA gene, if Tucker's a carrier we will find out and then know that Carl is also. But in knowing that information it can become tricky for like life insurance, etc. so we can opt out of getting that information or look into life insurance options for tucker before just in case, so that later in life he doesn't have trouble getting it. So as you can see, a lot of thinking and a lot more waiting. Needless to say my head is still spinning and I will be hitting my knees hard. God is the one in charge. I have to remember that. Again, this doctor was wonderful and was also put in our path. He is extremely patient and spent about an hour talking with us. I also asked him if he thought this could be something tucker outgrows, he said probably not and he was about midway between thinking it it nothing and it is serious. One other thing he suggested was getting a hearing test done to make sure his speech delays weren't due to that, and if not to probably go ahead and start speech therapy as well.

So there you have it. Now we wait. Please continue to pray for tucker and all of us in this journey. Please pray that our insurance will cover whatever is necessary and if not, that God will provide as he has this whole time:) thank you all so much! We appreciate the support more than we could ever express.

Hope all are doing well!

Love and blessings,
Traci



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Fall

I love fall. I love fall for so many reasons, here are a few:

Pumpkin spice lattes
Stews and soups
Uggs
Sweaters and leggings
Birthdays
Halloween and thanksgiving
Football
And of course, cooler weather!!

Speaking of cooler weather, yesterday we got our first taste of fall. The weather was amazing!! We couldn't help but spend most of the day outside, except when the texans were playing!

Perhaps the best part of the day was when tripp decided it was time to ride his big boy bike! He has been riding his glider bike like a champ for some time now, so we knew he was ready. It only took a few tries and he was off! It won't be long before the training wheels come off! Our big boy is growing up so fast:( I also made Susan's split pea soup yesterday. The smell alone reminds me of her so much. I can almost hear her telling me stories while I was preparing it:) even when I read the recipe I can hear her voice:) it was a great day, playing outside, watching football and the smell of soup cooking on the stove:) fall has arrived and we are welcoming her with open arms;)

Here are a few recent pictures:)




We went to visit Grammy on Saturday:)



Carl and Tripp racing at the cemetery, Grammy was smiling down on us:)



Tuckey helping dad fix the dryer



Love:)



So blessed enjoying the day and each other:)



Off he goes!




Our big boy:)

Thanks for stopping by. We go to see genetics this week, please say a prayer for us and the doctors:) thank you all!!

Have a blessed week:)

Love and blessings,
Traci


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Update

This has been a busy week of appointments. Wednesday we went to see our surgeon for a follow up on tuck's g-button. All looked good, except the doctor wants us to continue with a topical steroid to help the sight look even better. It's still not "normal" looking but looks 100% better to us:) all in all a good appointment.

Thursday we went back up for our appointment with our GI. I had an arsenal of questions as usual;) our GI is amazing, so helpful and genuinely cares about tucker. Some good news we got was that it appears tucker has grow some length wise, which is huge for us. He is starting a new curve. She said only time will tell if it is a fluke, if it's due to better nutrition or if it is due to the steroid we have been administering in his g-tube once a day to help with the unknown inflammation. I am praying it is not a fluke! We need some good news:) another bit of good news is that since tucker has been eating so well and gaining weight very well, we are going to stop feeing him through his tube at night and just let him proceed on a normal diet. I am going to take him in for a weight check in 2 weeks to make sure he is at least maintaining his weight, which I'm confident he will:) God is so good!! We will obviously be leaving his button in for now, especially since we don't know what the underlying cause is and since we do use it to administer all his medications too. We go back in 4 weeks at which time she will likely schedule a repeat endoscopy to check and see if the steroid is helping with the inflammation or not.

I finally spoke with our immunologist yesterday evening as well. It was a lot of information and a bit confusing but I will try my best to condense it. Basically they got back some results on 2 genes. They came back normal. Apparently these are the most common genes that this disease shows up on. So now they are testing a rarer set of genes to check. So that means 6 more weeks of waiting:( however, the doctor explained that even if those come back normal she will not be convinced. There is something called pseudo genes that are present on the genes that came back normal. Sometimes the normal result can be from those and not the actual gene. This is a really confusing concept, but that is what I understood it to be. So if we get another normal result she is going to send a blood sample to an expert in deciphering the two at the national institute of health in Washington. He is a mentor of hers and a friend and is willing to do this for her. If that is normal then she will do a few more rare genetics tests. She said at that point we will be into the extremely rare area and it will take time. She also wants us to come into the clinic when the geneticist is in. Once a month they join forces and see patients who may be difficult cases and such. She thinks it could be helpful for us. I told her we are willing to do whatever it takes and that I am happy to see a change in him, he is taking steps, eating, talking more, more energetic, healthy, etc. however, I know that is because of all the medications, steroids and iron infusions. I have a feeling if we took him off of all of those he would slip back again, she agreed. She said her gut is telling her there is definitely something going on and she is going to expend every effort to try and figure it out. Basically this unknown severe inflammation is causing lots of other problems that we are treating, but until we can figure out the cause and treat it, we will have to continue putting out these little fires. The analogy our hematologist used in the beginning is a good summary: basically it's like there is a house fire and we cannot find the main source, so until then we have to keep extinguishing these little fires that pop up until we find the main source and extinguish it. At that point all the little fires will dissipate as well. I know God is the ultimate healer, but like I've said before it is hard to put all my trust in Him when it comes to my child's health. But I am trying and I know all these improvements have come from Him. I also know He has put all these doctors in our path and is leading them as well. I cannot express my frustration into words but I know that I must be patient and trust in HIS PLAN. Please continue to pray for tucker and our doctors.
Sorry for the lengthy post, just wanted to document the information and for those who are interested.

Next week we go to genetics for the first time since March and are curious to see how they will weigh in. The following week we go back to hematology and see when/if we will have to have another iron infusion. I will update with any new information. Thank you again for all your thoughts and prayers:)

Hope all have a fun, safe and blessed weekend:)




Getting so close to walking:) and loves to be outside!!



My little officer:)

We had family pictures taken back in July and finally got our disc here are a couple:)










A little rainy day fun... Painting in the kitchen:)

Thanks again for stopping by:)

Love and blessings,
Traci

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a weekend of nothing

A weekend of "nothing" was just what we needed! We didn't have any plans and we embraced it! We hung out around the house, played outside, went out to eat and spent time as a family. Sunday we watched the texans game and boy what a game it was!!! Love football season! Sunday night I made a big sunday supper and coach came over. Then we went out for a walk on the lane. It was a great end to our weekend:) here are a few pics from the last few days, including some from Thursday night. We went out to dinner with our good friends brenden and chad to celebrate my 30th! We even ran into our friends/cousins Adam and Jessica who also happened to be out without kids! Crazy odds!! Anyways here are the pics:)



Tuckey got a haircut!



Dinner date...I'm a lucky girl:)



Bren and me...love this girl:)



Jess, Bren and me...love them!!

I took the boys to the mall on Friday and we had a super fun day!



We rode the carousel...



Got to ride in a fire truck! (After I Clorox wiped the heck out of it! ;))




An of course we had chick fil a:)



Go texans!!!



Tuckey is getting sooooo close to walking! He is making so much progress everyday:) we have two appointments this week and another next week. Hoping to finally get some answers. I will post as soon as we know anything:) please keep up the prayers!!

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

Love and blessings,
Traci


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Birthday!

I had a wonderful 30th birthday!! This past weekend was amazing and today was amazing as well! I spent the day as a mom like is usually do;) I was overwhelmed with texts, calls, emails, and Facebook messages. Makes me realized just how blessed I really am! Thank you all!!! Perhaps the best part of my day was going out to dinner with my 3 favorite guys:) a special thanks to yaya, coach and aunt rat for coming too:) thanks to dad and ginger for coming by to bring a champagne toast and a special "birthday gram"! and to aunt carrie for stopping by with a fabulous gift, flowers, cupcakes and cards!! love you all!!! I am ready 30!!! Bring it on;) here are a few pics from my day:)




Go texans!!




Thank you aunt carrie and uncle Jimmie!!




Birthday Dinner:)







Best part of every day:)


Thanks again to all my wonderful family and friends who made my birthday such a memorable and special one! Love you all!!!

Hope all have a blessed week!

Love and blessings,
Traci

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30

On the eve of my 30th birthday, I am sitting here thinking about how excited I am to be here. I used to think 20's were the best years of my life, but I'm pretty sure nothing will top my 30's! Except maybe my 40's;) we will see! I have been blessed with the most amazing man by my side who is my best friend and a wonderful daddy to our 2 precious boys:) and I have been blessed by two sweet and perfect little boys!! My life is really just beginning:) I've had my share of fun times and plenty of life experiences, good and bad, but I feel like they have all been stepping stones to where I am now. I can look back now and see what God was doing. He is still working in my life everyday, and I have learned the most important thing is to trust in Him and to give Him all the glory! He will take care of the rest!

This past weekend was full of birthday celebrations! I have to say I am blessed beyond measure with the best family and friends!! They went out of their way to make me feel special:) it all started Friday night. My dad and ginger took Carl and I out for a delicious dinner at Kirby's steakhouse followed by some wine and good laughs at a wine bar. It was such a fun night!! And I may have had a few glasses of champagne too;) it was a memorable night for so many reasons!!! Thank you dad and ginger!! Saturday morning, my mom picked me up, took me to breakfast then to a day spa where I had the most amazing facial and hot stone massage! It was a much needed day of relaxation, my massage therapist asked if I had been under any stress lately, um just a little;) after the spa we did a little shopping then rushed home to get ready to meet my sisters for lunch. My mom wouldn't tell me where we were going and just kept saying it was some new place my sister wanted us to try. I was honestly a little annoyed because we usually get to pick the place for our birthday but I thought, oh well. Anyways, they ended up surprising me and taking me to painting with a twist where family and friends were waiting to celebrate! I had no idea!! It was so much fun, I have always wanted to do that:) my sister and my mom did an amazing job with food and decorations! Thank you mom for a day I will never forget and for always being such a great mom!! Thank you Kelly for all the time and effort you put in to making my day so special! Thank you to Tiffany and all my friends and family who came out:) love you all and so blessed to have you all in my life! It was a great and memorable birthday weekend. Tomorrow on my actual birthday, my sweet hubby and boys will be taking me out to dinner:) can't think of a better way to spend my day! Bring it on 30's, I am ready:) here are a few pics from the weekend:)



On our way to dinner (thanks mom and Keith for watching the boys!)



Kirby's:)



Yummy!!


Here are a few pictures from painting with a twist, my mom has the rest and has not sent them to me yet, hint hint mom;) I will post more later:)











My masterpiece!

Thank you for stopping by! I will update my blog as soon as I get any results on Tucker's tests, hopefully this week!! Please keep him in your prayers:) thank you all!!

Love and blessings,
Traci:)

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Still waiting

Waiting is the hardest part of all of this. It has been 5 weeks 2 days and counting since tuck had his labs sent to genetics to confirm or deny the specific disease they are testing him for. We were told it would take 4-6 weeks for results. I was waiting because I knew either way we would have an answer. Well that was a bit shattered on Friday when I talked to one of our doctors who explained that even if it comes back negative, he could still have the disease they would then just need to test a rarer set of genes which could take up to 6 more weeks. I felt like someone just knocked me down. I'm so tired and frustrated with all of this. However, the silver lining in this storm cloud is that tuck is doing soooo well! Our GI doc is even considering stopping his night tube feedings for a while and see how he does. That means we will be one step closer to having the g-button removed! He is also getting super close to walking. He has made so much progress lately and for that I am thankful! I have to remember who is in control and who is ultimately going to heal him:) I try so hard to be positive most of the time and to keep my faith, however I am human and need a little time every once in a while to feel sorry for myself, right?? Ok maybe not too much!

On a totally different note Tripp started back to Mother's Day out this week. This year he is at trinity Lutheran and we love it! He has done so well and loves his teacher and class. My boy is getting big:) hopefully next year tucker will be well and be able to go too:)

I'm also well in the midst of my birthday week! Yes, we always had birthday weeks at our house. Most years I live it up and like to remind Carl every chance I get, but this year things have been so crazy I haven't really thought about it. I do, however, think about it when I get all my coupons and freebies in the mail! Oh and the return of my most beloved drink, the pumpkin spice latte also happens to return around my birthday! Nonetheless, I will be turning the big 3-0 on Monday! I've had a few early presents such as, my bestie traci and her husband Matt took me out to lunch last Monday to celebrate and my sweet mom had the cleaning ladies come today! I love a clean house, especially when I don't have to clean it;) tomorrow night my dad and ginger are taking Carl and I out for a nice dinner (without kiddos!! Thanks mom!!) and Saturday my awesome mom is taking me for a massage and facial followed by lunch with she and my sisters:) I am one blessed girl!! I'm looking forward to my thirties, I have an amazing husband, 2 precious boys, a wonderful family, great friends, and a faithful and loving God...what more could a girl ask for;) I really do think these will be the best years of my life:) like I've said before, here's to being fit and fabulous!!

Ok here are a few pics:)




Cruising through the pasture listening to our bible songs!



Swim date at chiefs



Playing dominos!



First day back!



My little law enforcer;)



My other law enforcer;)



Really into wrestling these days!! Boy oh boy what do I have in store;)

Thanks for stopping by! Please continue to pray for our sweet tuck:)

Love and blessings,
Traci


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