Lately

Thought I would do an update on what we have been up to lately and talk a little bit about my precious Tripp! Luckily life hasn't been too exciting lately, that is good for us;) we have been hanging around, running errands, just being normal! No doctors, no hospitals, no tests this week:) well except for today, tuck has to have his hemoglobin checked to make sure the iron infusion has helped, otherwise a blood transfusion may be in our future:( hopefully not! We also have " meet the teacher" for Tripp this morning. He will be starting at trinity this year and we are super excited! He loves school and I think he is going to do really well. He starts next week.

Tripp has become such a big boy these days. One of my favorite things is that he has made himself Tucker's communicator. Whenever tuck tries to tell me something Tripp happily jumps in to make sure I understand, so precious!! The boys have been interacting so much these days and absolutely love each other. They do fight a lot too but hearing them playing and laughing together brings the greatest joy to my heart:) I am blessed! Tripp is improving with his speech everyday and constantly cracks us up! He is wise beyond his years;) he has also proven to be quite the swimmer! The other moms and instructors in tripp's swim class were so impressed by his skills, especially since he wanted to swim on his own with no assistance or life jacket, and did a really good job! Definitely gets that from his daddy:) poor tuck will probably be more like mommy, not a great swimmer;) anyways, I love my big boy and can't believe he is 3 1/2!!

We are still waiting on test results and in the mean time are going to enjoy some downtime without so many doc visits in the next week. We will also be getting ready to celebrate my big 30th coming up!! Cannot believe I've reached my 30's!! Here's to being fit and fabulous;) ok I will let the pics do the rest of the talking:)

We went to an Astros game last weekend and had great seats right behind home plate! It was a blast:) thanks traci and matt!










Coach got to come along too!



Dance party at our house! These boys love to shake their tooshies:)



Love my boys!




Had a swimming date at chiefs:)



Tripp wanted his "bruder" to sit by him and have snacks.



I got my license renewed yesterday and stopped for a pumpkin spice latte! I will take me time however I can get it;)



And last night I had dinner with some sweet, dear friends! Love these girls!!

Hope all have a great long weekend!! I know we will:) love to all!

Love and blessings,
Traci

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Iron infusion

Today we headed back to our home away from home, Texas children's hospital. We had to be there at 8:30am for lab work and to meet with our hematology doctor. We didn't have to wait long to be called back, but had to wait about 30 minutes for the vat team to come up and put in an IV and draw some blood. In the mean time we talked to the fellow who wanted me to fill him in on tuck's history. I could probably tell it in my sleep by now, and with all the terminology I have now I swear I could be a doctor too;) anyways, he said he was eager to get it in on tuck's case because it was so interesting. What I'm sure he meant was his case is such an enigma and I'm sure to a doctor, they love a challenge and maybe discovering something new. At any rate, we welcome any new eyes and ears:) after our lengthy chat, the vat team came and went and then our doctor came in. He told us they were going to go ahead with the iron infusion (we were expecting that) and he proceeded to explain all the risks and how it would all go down. He said that the hope is that they "fill up his tank" and hopefully his body will respond and continue to replenish, if not we will have to do an infusion again. There is a slight chance that his low hemoglobin levels may not be due to iron in which case a blood transfusion may be necessary, but he doubted that would be the case.

From there we headed to the infusion area to find a spot. We didn't know what to expect and we were nervous. What we found was a big open room with lots of chairs and couches, a lounge and a playroom area. Tuck spotted the toys right away so we went and found a spot over in that area. Tuck played around with toys while we waited for the iron to be ordered. It took about 2 hours then they finally got him hooked up. They started with a steroid first to help in case he had an allergic reaction. After that they did a trial dose of the iron then we had to wait an hour to make sure he didn't have a reaction, which he did not. At that point they started the iron that would take 2 hours, we were originally told 3 hours so it was welcomed news:) basically, tuck did really well! He only slept for about 30 minutes the whole time. He was in such a good mood and so cooperative and smiley:) he had two nurses that loved him! One kept giving him chocolate pudding, which he loved! So after about 9 hours, 2 chocolate pudding cups, lots of vital checks, hours of iPad entertainment oh and some iron, we were done! Tuck passed out as soon as we got in the car, poor guy:)

All in all, it wasn't too bad. It was obvious we were the "newbies" especially since I had to borrow a phone charger and was told 'you must be new';) the people around us were all very nice:)

It's amazing how God is always at work even when we don't realize it. I have been dreading this infusion and feeling so helpless with all tuck is going through. I even had a bit of an emotional breakdown yesterday. I prayed about it and today walking into that room and seeing so many sick children with their devoted families by their side really warmed my heart. It was obvious that a lot of those families were 'regulars' and getting things like chemo. It again made me realize how blessed we are. Tuck may not have a diagnosis and our journey is by no means easy, but it could be a lot worse. Please say a prayer for all the sick children out there tonight and make sure and thank God for your healthy little ones, my eyes have been opened to a whole new world. We also had the privilege of meeting an amazing family. When we first arrived a sweet girl approached us and offered tuck a stuffed animal. Her mom followed behind and explained that they always brought stuffed animals to give out when they came. I was floored. They also made us feel so welcome and sat and talked to us for a while. We learned that their sweet daughter, corby, suffers from a blood disease and is getting chemo as a treatment. They all had the most positive and amazing spirits. We were so blessed to have met them and I know God had a hand in it:) her sweet mother has already posted on Facebook about tuck and asking for prayers, so grateful! So I ask all of you to please keep sweet corby in your prayers as well:) I am just blown away by all the work God has been doing in my life through all of this, from strengthening my faith, to opening my eyes, to all of the amazing people he has placed in our path. Gives a while new meaning to the song "our God is an awesome God" because he truly is!

Ok enough of all the wordiness! I also got a call from our gastroenterologist on the way home. She had the results of his biopsies from the scope procedures. Basically all looked good with a few minor inflamed spots, but the main area of inflammation wasn't as severe as it has been but now labeled more as a chronic inflammation, which makes sense considering he has had it for some time. Because it was so late she hadn't discussed with our immunologist but will next week at which time they will come up with a plan. We are also hoping to have the genetics testing results back and have an answer. I will continue to update my blog. Hopefully this will be the last informative post for at least a few days, we are ready for a break:)

Again, thank you to all for your thoughts and prayers this week, they were felt and much needed. Sorry for the long post!! Here are a few pics from today. Hope all have a great weekend!
















Love and blessings,
Traci

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Rough

The title about sums up the last couple of days. Tuck had his endoscopy and colonoscopy procedures today with yesterday being our prep day. If you've ever had one as an adult you know it's no fun, so you can imagine what it's like as a little guy. We had to start it after lunch, so my sweet father in law took Tripp to speech and to run errands in the morning so I could have some time to do a few things and get tucker down for a nap before all the chaos began. Carl worked half a day then came home to help. To sum up the day wasn't too bad, tuck was in a pretty good mood and Carl being home was a good distraction that tuck didn't even miss his milk...until bedtime! I was able to get him down and thought hey we might get some sleep! Boy was I wrong. He slept for about an hour then woke up, we tried everything to get him back down but he was wide awake. Long story short, little man didn't go to sleep until 4:30 am!! Carl and I took shifts every two hours. Once he went down he woke up every hour until 745 when we had to leave. Poor guy was so hungry and wanted his milk. He kept saying "peeeese???" (Please) which broke my heart:( anyways, Carl went to work, aunt janelle came over to watch Tripp (and alternated with coach all day) and my mom came with tuck and me.

We had to arrive by 9:30 for the procedure at 11 am. Of course they were running late and didn't take him back until 11:30. At that point he had been screaming and crying for his milk for about an hour. It was awful and there was nothing we could do to calm him down. He even tried to eat my Chapstick he was so hungry! At least it was cherry flavored ( gotta find a little humor in a bad situation;)) by the time they took him back my nerves were shot and I was ready to pass out. Luckily I brought my bible study with me to do, which was just what I needed. That and a little chat time with my mom:)

Ok on to the results. Basically his colon and esopogus looked good. She checked his stomach and g-button because of all the pain he's been having and it looked good too. However, the inflammation in his duodenum is still present and looks like it hasn't changed. She won't know how severe it is until the biopsies come back, that is how they found out it was severe last time. She also took biopsies everywhere else and said sometimes there is inflammation even when they can't see it. So we will know more in a couple of days. So he will most likely be having his iron infusion on Friday, which means another day in the hospital hooked up to an IV for several hours:( the iron is absorbed in the duodenum region so this is why they think he is not absorbing iron properly. So not great results but not bad either. We are still awaiting results from our immunologist and the anesthesiologist was able to draw labs for our endocrinologist while he was under as well. The staff as usual was amazing and all tried to help tuck cheer up:) after the procedure tuck was mad as ever, trying to rip off all his chords until he fell asleep in exhaustion.

When we finally left tuck was passed out in my arms so I carried his heavy limp body all the way to the car. Well, we had to wait forever for valet to bring the car around. During our wait tucker starting spitting up a little blood, which freaked me out, then proceeded to have a blow out in his diaper. I was on the verge of a breakdown. That is until a sweet little girl named jasmine sat down next to us. She was bald and had just finished a round of chemo. She was smiling and playing with her Barbie. Her mom was nice and when she saw tucker spitting up mentioned he might be hot and I should wait inside. Funny how God always has a way to bring us back down when we start to feel sorry for ourselves. I am thankful for that:) it was a VERY hard day, but it could have been a lot worse. Tonight I will pray for that sweet brave little girl:)

I will also be praying that we are closer to answers. I am tired of dragging my poor baby through all of this, but I know there is a reason for it. Our hard week is only half way through but we will make it! We are so blessed with such amazing friends and family. They've really come together in our time of need. I wish I could list everyone by name, but because we are so blessed it would take me all night and honestly I'm about ready to pass out;) thanks again for all your thoughts and prayers, you really don't know how much each one means to me and us. Love you all!!




Starting the prep, poor guy didn't know what was coming:(




Yaya trying to keep him entertained:)




How he was majority of the time:( don't you just love my expression?!




All done!

Thanks for stopping by! Please continue to pray for us and tuck! I will update after the iron infusion on Friday. Love and blessings to all!!

Love and blessings,
Traci


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Gearing up

This week is one I have been dreading but ready to get over with. Tucker has his endoscopy and colonoscopy procedures on Wednesday, with a prep day most of the day Tuesday. Worst part is that he will be on a clear liquid diet and then come midnight he cannot have anything to eat or drink (he can have clear liquids up until a few hours before). His procedure is not until 11 am. We do have to be there at 9:30 which means we will leave around 8 am. So at least he will be moving around and not just stuck at home wanting his milk:/ I'm planning on not getting much sleep Tuesday evening:/ maybe I will be surprised;) the procedure could take up to 3 hours (which I'm thinking less) and then after he recovers and wakes up we can go home. We will definitely be hitting up chickfila on the way so my poor baby can eat his fave chickey and frenchies;) Thursday he has physical therapy and then Friday he is set up to have an iron infusion. They will of course check his iron levels first, but both doctors seem to think he will most likely need to get iron this way until they can figure out the underlying condition. So needless to say we have quite a week ahead of us. Please keep us and sweet tuck in your prayers:)

This past weekend we were pretty low key. Just what I wanted with the week coming up. We spent a lot of time as a family, ran errands and just relaxed:) Saturday morning I even got out for a bit by myself and had a breakfast date with my mom followed by some shopping:) it was good to get out alone for a bit;) anyways here are a few random pics from my phone:) I will update after tuck's procedures with any new info.




Made a yummy dirt cake for the boys!




Tuckey loved it!





Who needs a bike when you have a 4-wheeler;)





Tuck wanted in on the action!





Our DVD player in our car was momentarily not working, all I can say is thank God for iPads;) (sad I know!)





This little guy loves him some ice cream!





Today after swimming lessons we went to the mall for a bit, before our crazy week begins!





Found this gem at coach's house, Carl's hair was really light like tucks!





And I have decided to start a new fitness regimen today, with everything going on I've been neglecting my activities!! Day one down and I feel great!! Here's to toning my muscles and maybe dropping a few LB's;)
Thanks for stopping by:) please keep us in your prayers:)
Love and blessings,
Traci
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Endocrinologist

Today we had our visit with the endocrinologist. Last week when we were referred the doctor told me to be prepared to be put on a waiting list that could take up to 3 months. I figured as much but knew I wouldn't settle for that and was prepared to call everyday twice a day to get in on a cancellation like I've done before;) well I guess God knew I needed a break and miraculously when they called to schedule our appointment, the lady said "oh we have one open on Tuesday". I didn't even let her finish,I said I would take it! I didn't care when or where! So by the grace of God we were able to get in. The bonus is that his endoscopy and colonoscopy procedures are next week and he will be under anesthesia. Since I knew they would need to draw labs it worked out perfectly, they could get the labs while he is under. Prayers being answered?? Yes!

Ok on to the appointment. We were referred because the doctors were concerned that his height is not progressing as it should. I prayed that the doctor would be the right one for us and she was. She was young and very bright. She was super sweet and great with tucker, who has ALOT of anxiety when it comes to doctors and nurses. In fact he didn't cry very much at all with her. She sat and talked with us for about 45 minutes and wanted me to tell her all about his history so she could understand him better. Afterwards she examined him and took some measurements. She explained to us that they would be getting some labs to look at two different Things. The thyroid and his growth hormone. Back in march when we were hospitalized, they checked his thyroid and it was normal so she really doesn't think it will be abnormal, but still wants to check. The other is checking his growth hormone. If abnormal more testing will be needed, but basically he would have to have nightly injections for most of his life. If neither are abnormal, then they will send us on to genetics for other kinds of testing. We are already scheduled to see genetics next month, so that worked out. She also said she would like to give him a little more time to see what happens. Maybe he will show a little more improvement?? His weight is progressing very well. She was looking at his charts and was astonished at how much testing and labs had already been done and mentioned that this was puzzling since most seemed to be normal with only a very few abnormalities. I told her to tell us something we didn't know;) all in all it was a good visit. I'm not sure how I feel about everything at this point since it's now a waiting game, but I have to keep reminding myself who is in charge and I have to keep the faith and keep praying:)

Next week is a big week for us. The endoscopy and colonoscopy procedures are scheduled for Wednesday, with Tuesday being a day for prep, which in all honesty I think will be worse than the actual procedures:/ he has physical therapy on Thursday and then Friday we get his iron checked and will likely have to have an iron infusion done that day as well. I have been feeling so down and tired and frustrated with it all lately, but I think it's mostly in anticipation for next week! But we are fighters and we are strong in our faith! We will get through this like we always do:) please pray for tucker and please say a little prayer for his mama too:)

We are still waiting on results of the past labs from immunology to determine out next move. I will update as soon as I know. Thanks again to all of you for your thoughts and prayers we appreciate them and need them:)


Hope all are having a great week! Thanks for stopping by:)




Typical day at our house:)



Loves the iPad!



Swimming lessons:)

"Trust in The Lord with all your heart, do not depend on your own understanding. Seek his will in all you do, and he will direct your paths." Proverbs 3:5-6

Love and blessings,
Traci

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Tuck update

Today we were back at Texas children's again for our long awaited appointment with our GI. She has been with us from the beginning and is awesome!! She was on maternity leave for the last three months, so we were anxious to see her today. Luckily, she has been in contact with our immunologist so she is in the know and had just spoken to her and had a list of things she wanted to take care of. These two doctors have been amazing and truly a blessing to us. They communicate very well and are truly working hard to help us and sweet tuck. I have been praying for the right doctors and staff and know that God is placing them in our path. Ok on to the info. I got a lot again today and of course was prepared with my arsenal of questions, as usual:) I will try to condense the info I received today, please excuse me if I'm wordy and my grammar is not up to par;)

First of all, she told me that they wanted to do an endoscopy as soon as possible (which we already knew), but that after talking with immunology they also want to do a full colonoscopy as well. Apparently, with the disease they are looking into it is common to have inflammation there as well. So they scheduled it for two weeks from now, which is also the same week that his iron infusion is to take place, if needed. We also have to do a lot of prep the day before and he will be on a clear liquid diet for 24 hours. Not looking forward to that since milk is his favorite. The next thing she said was that they both agreed that he needs to see an endocrinologist. Reason being, he is not growing in length the way he should and they are a little concerned. They want to make sure he doesn't have some sort of hormonal defect or something. She said he is just a complex case so they want to make sure and cover all the bases. One of the better pieces of info was that he is gaining weight well and eating better so they are cutting back on some of his overnight feeds. We were also given several new meds including a new antibiotic to help to protect his immune system. Like I said, I was given a lot of information, so this is the gist of it. For now we wait. We will have a busy week coming up, but hopefully it will give us more answers. We don't have 'the' answer yet, but I feel like we are on the right path and that God is placing the right people in our path.

Overall, tucker is actually doing really well. He is getting closer to walking and really talking up a storm these days:) he is developing quite the personality. His favorite words are yea and no! :) he is eating more and continuously gaining weight. I am so thankful for these improvements, now if only we could get 'the' answer.

It's hard not to have fear and feel like our life is in complete chaos, but I have to remember who is really in control and put all our trust in Him. Only then do I feel some peace:) please continue to pray for our boy. Thank you all! I came across this verse during my quiet time yesterday and felt it was great to share:

"Always be joyful. Keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus."
1thessalonians 5:16-18




My sweet tuck was in a good mood today! Thanks to my mom for coming with me today:)

Thanks for stopping by.

Love and blessings,
Traci

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Wednesday

Here's a little glimpse into our day yesterday:)




Started out good, had some coffee and some quiet time...



The boys played with our iPads



They were being sweet:)

Tripp went to swimming lessons with coach and tuck's physical therapist came over.



Then after nap we played in the tub!



Then the terrible threes struck again! ;)



And little brother got in on the action...we had a rough latter part of the day!



Thank goodness for Yaya who came over to watch the boys while Carl and I went to dinner and a movie! It was the perfect night:) thanks again Yaya and coach too:)

Today we head back into Texas children's to meet with our GI. Hoping for some clarity in our process! Will update ASAP:) thanks for stopping by!

Love and blessings,
Traci


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Splash splash!

We have done a lot of swimming lately! Friday and Saturday we went over to my dads house and spent most of the day hanging out by the pool. Friday coach joined the boys and I and Tripp had a blast swimming with coach! Tuck and I spent most of the time with our feet in the pool watching from the side;) Saturday, Carl and I took the boys and spent a good part of our day out there:) it was super fun and relaxing! With the exception of my little white boy, we all got some sun!
Sunday morning we had our family pictures. I had originally planned them for the spring when the weather was cooler, but tucker was hospitalized so we had to reschedule. It was hot!! Even though we did them early in the morning. We had to wake up both boys so they weren't in the best mood. Oh well, I think we managed to get a few good shots;) we shall see! Sunday evening we went over to the voelkel's house for dinner and some swimming! Tripp had a blast as usual and loved uncle lance throwing him around:) Michelle and mrs. Brenda were gracious hosts! It was a fun evening:) we had a great and much needed laid back weekend:) here are a few pics:)












It's a rough life;)




Swimming was successful!




My sweet hubby:)




Love my boys!




Breakfast after pictures:)




Tripp made a cake at heb




And he was eager to eat it! Haha




Yum!


And so far this morning has started off well:)




- chief stopped by to visit:)




He brought some Starbucks :)




Put a yummy new recipe in the crock pot!




Had some quiet time:)

And now we are off to swimming lessons:)

Thanks for stopping by! Hope all have a blessed week:) I will be updating again soon on tuck, we get to see our GI this week! Please keep tuck in your prayers:)

Love and blessings,
Traci

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