Surgery and some news

So today we had our consult with the surgeon that will be putting in Tucker's g-tube. While we were in the waiting room, I got a call from the immunologist with some new info. The little bit of blood they were able to get the other day indicated several things:
His monocytes (a type of white blood cell) are still high. His platelets are high and he has a high number of 'bands' which are a type of immature white blood cell. They are not sure why these numbers are the way they are. So they want us to do two things. First, get an ultrasound done. Reason being, apparently one thing these platelets could indicate is a problem with the spleen. So they want to check it out. Second, they want us to see a hematologist/oncologist to look further into the blood issues. Obviously the oncology word scares the crap out of me, but it was explained to me that this type of doctor is a specialist in blood and cells, etc. so they are wanting them to take a look to see if they can narrow the process down. The doctor also explained that all these specialists are working together to try and get a diagnosis. So while we were waiting, I managed to secure an ultrasound appointment for this Friday and left a message with the hematology scheduler. Normally, I have to wait on their call, but I know his orders are already in the system so I decided to be proactive.

Back to the surgical consult. The doctor was great! He received an email from our immunologist explaining the situation with the lab work. So he told us they would definitely be able to get the labs drawn while tuck is under anesthesia. We will also have the surgery done at the med center location, so that's great. He went over all the risks and info and told us we would need to wait to hear from his secretary to schedule. I explained how we would like to get it done as soon as possible for so many reasons (ng tube needs replacing, labs to get the ball rolling on diagnosis, etc). He told us he would call her and try to get a ahold of her and get her to call us today instead of tomorrow. He also gave me her number to try as well. I started calling as soon as I walked out of the office. I left a message. When I pulled into my drive way I had the urge to try once more. She answered and said she just got back to her desk and just had a cancellation. So tucker will have his surgery this coming Tuesday. They will call us Monday with a time. We will have to stay for 3-4 days depending on how tuck does. So back to our home away from home:/ It continues to amaze me how God is working all of this out. The fact that the immunologist called right before we saw the surgeon. The fact that I was able to get in for an ultrasound this week. And the fact that I got a hold of the surgery assistant right after she had a cancellation. Thank you God for working it all out. As nervous as I am, I know that God is with us and watching over tucker. Everything is going to be ok. I'm going to try and stay strong and let faith win out over my fear! (Thank you Reid and Rachel for your inspiration!)

That is it for now. I am exhausted and praying for answers. Please continue to pray for us, God is hearing us:) please keep us in your prayers for next week. I will definitely keep posting updates on my blog. Thank you again for all your support. We love you and thank you. Thanks for stopping by.

Love and blessings,
Traci


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Happy Mother's Day 2013

I had a wonderful Mother's Day weekend:) it started Friday night with a date night! It has been a while and was much needed:) my sweet mom came over to watch the boys. It's hard to get out these days especially because tucker is so attached to me, plus the complications of having an ng tube. So thanks mom for taking on the challenge!! Anyways, Carl and I had a nice dinner then he surprised me with tickets to see Deryl Dodd at dosey doe! It was such a great show!! We had such a great night:) I'm blessed to have such an amazing hubby:) here are a few pics from our date, including one of Deryl Dodd singing amazing grace with his parents, such a cool guy!!









The rest of the weekend we got to hang out as a family:) unfortunately, Tripp wasn't feeling well Saturday and was running fever:/ so we spent most of the day lounging around. Carl was busy working on our house. We are doing some renovations. Last weekend he knocked out a wall and this weekend he started putting in our wood floors! I cannot wait until it's all finished:) next step will be renovating the bathroom! However, progress will probably be slowed when tuck has his surgery:/ oh well! One thing at a time:)

Sunday morning, I woke up to Tripp in my face saying "wake up mama!" Cute, right? Not so much when it is 4 am!! Haha. I guess he was feeling better and had lots of playtime to catch up on! Anyways, we were all up bright and early! Carl and Tripp picked up some bagels and coffee and brought me flowers and a card. It was so sweet:) after breakfast we headed out to go see Grammy. It's always emotional going to her site, but especially on the first Mother's Day without her. I miss her so much!! But this year we know she's celebrating in heaven and with her mother too:)

After I put tuck down for nap, Tripp and I took my mom out to lunch. We went to gringos and had some Mother's Day mimosas to boot! It was a great lunch:) I'm so thankful for my mama and all she has done for me and continues to do for me! Don't know where I would be without her:)

We ended a great day with grilled chicken, green beans and home made Mac'n'cheese:) my mom and coach joined us for dinner and dessert:) to say I am blessed would be an understatement! I am blessed and honored to be a mom to two precious and sweet boys! It's a hard job sometimes, but I wouldn't trade it for anything in the world!

It was nice having a somewhat laid back weekend before our crazy week starts again. Tomorrow tuck has his surgery consult and we will figure out when all of that will take place. Please continue to pray for us:)

Thank you all and thanks for stopping by! Hope all you moms had a great day!!




Tripp wasn't feeling well and tuck wanted to snuggle:)



Happy Mother's Day!!



Bringing mommy flowers:)



Visiting Grammy:)



Checking out the new floors:)



Cheers to us!



Think he had a fun weekend:)

Love and blessings,
Traci


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Visit with the immunologist

Yesterday we were able to get a visit with the immunologist. It is the next step in our process with tucker. When I originally called last week, the earliest appointment they had was mid July! I asked if there was a list we could get on to be called in the event of a cancellation. She told me they didn't do that but I could feel free to call and check periodically. Well I did feel free, everyday, twice a day! I'm sure they thought I was crazy, but it paid off! One day I got it pushed up to June, then the next day I got it for the very next day!! That day was yesterday. As much as I would like to take credit, I know there's someone else who is working this all out for us:) Our God is doing amazing things for us in this long, exhausting process!

Ok on to the visit. One of the main reasons we were sent to immunology was due to the results of his path from his endoscopy. Due to the severe inflammation from an unknown source, the pathologist suggested the immunologist because to him it seemed like it might be some type of immune disorder. The other reason is because of certain blood markers. I don't know all of the technical terms (although I should by now!) but basically he's anemic, and his inflammatory marker has consistently been up, hemoglobin is out of whack, and a type of white blood cell count is up. So our pediatrician was on board as well. On Tuesday we went to see our pediatrician for a blood count check. They did a finger prick and the results were not completely normal so the doctor wanted a better sample from the vein. Like I've said before tucker is a very hard stick, so needless to say it was traumatic and they didn't even get what they needed. So much so that I walked out of the lab and burst into tears! I have basically made friends with everyone there so one of the ladies came running over and hugged me. I felt so stupid but I just couldn't handle anymore.

Yesterday we got to the hospital by noon. My mom came with me and Carl met us there. We were in the room to see the doctor by 12:30. First one of the fellows came in to gather all the information. I swear I have told his story probably about a million times, but I will tell it a million more if I have to! Anyways after about an hour of background info and a quick exam she left the room to be followed by the actual doctor. We waited about 30 minutes then Dr. Forbes came in. She talked with us and told us he had already spoken with our GI dr at length to make sure she was on the same path. She then told us, that based on all the info that she thought his is going to be more of an immune disregulation rather than a disorder. Basically it means that it is more of a genetic thing. They wanted lots of labs taken to get started. She explained that they will be looking at each type of cell to make sure they are all working properly. They will also be running tests to make sure his antibodies are working properly. They will also do their own type of genetic microarray, however there's will look deeper in to see of there is any type of immune irregularity on specific chromosomes which will narrow their search. She also prepared us that some of these tests will take some time to come in and to be prepared that finding out a diagnosis is going to take a while. She said there wasn't really anything that was sticking out in her mind after looking at his chart. We were prepared for this. He has been somewhat of a question mark this whole time. It sucks having to wait, but we have no choice. However, we do feel like we are in the right place. Hopefully they can figure something out. The bad part is they tried to draw labs and after several sticks they were only able to get a little blood. Another traumatic experience, but this time Carl was there and I was able to step out. Obviously we cannot move forward until we get these labs. So the plan they came up with is to wait until he has his surgery. This way they can get all the labs they need while he is under anesthesia. I suggested this not knowing if they could, but they were on board! The only catch is, he will have to have his surgery at the med center location. Our surgeon performs surgery at different locations. So if its possible we will request the med center so they can collect labs. Reason is because some of the labs need to be read right away and cannot wait to be transported. So hopefully it will work out. If not, then they will have to try to pull some strings and see if the special team could draw blood from tuck one day using the ultrasound machine. However, from our experience in the hospital it's hard to get them. I'm still in awe that they don't have someone available for all services. Tucker can't be the only kid who had this problem. Oh well, I know it will all work out one way or another. The only thing is we cannot move forward until they have their labs. We will find out more on Tuesday once we speak to our surgeon. Please pray that this will all work out!

So basically we were at the appointment for about 4 hours! needless to say we were exhausted! That is all the info we have for now. Slowly but surely moving in the right direction. On a positive note, he is trying to swallow more food and we are still working hard with him. He chewed and swallowed some Mac n cheese the other night! I know this doesn't seem like a big deal, but at our house I was ready to throw a party!!

Please continue to pray for our boy and for some answers. Thank you all for your support and prayers we need them and are feeling them!!

I will end with some fun recent pics:)


Tuck is getting his muscle tone back and trying to climb on everything!



My sweet boys!



Waiting to see the doc yesterday



After we got home, such a trooper!



Took my boys to the park the other day:)



Precious!!



Tripp is going to kill me one day but thought this was hilarious!!



The boys love to play in coach's truck! We do this pretty much every afternoon;)

Thanks for stopping by! Have a blessed weekend:)

Love and blessings,
Traci

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Still a mystery...

This week we went to see a speech pathologist who is a feeding specialist with Texas Children's Hospital. She was really great and really seems to "know her stuff". She made lots of suggestions and we go back to see her in two weeks for a follow up, at which time she will see if she can fit him into her schedule and what exactly the game plan will be. One thing she suggested was seeing an allergist to see of he has an intolerance to milk and certain foods. I told her I would check with our GI who we saw today. I wasn't completely sold on the idea that he has any allergies because he doesn't seem to have any symptoms like he did when he did have some sensitivity to foods. However, at this point we are open to anything and everything. Fast forward to today.

Today we saw our GI doctor, as usual I had a slew of questions for her. She is such an amazing doctor and sat and talked with us for quite a while. We touched on the allergy issue and she doesn't necessarily think it's not a milk intolerance but she doesn't think that is the underlying issue. The inflammation found in his lower stomach region was apparently pretty severe and the path she took from it was read by an extremely seasoned pathologist. The pathologist was perplexed as to what was causing the inflammation and didn't think it was consistent with allergies. He thinks we need to see an immunologist as this could be some kind of immune type of problem. So that is our next stop, to see the immunologist/allergist. They will do a few tests of their own and hopefully be able to see if they can find anything. After talking with the GI, we also know that we will be re doing the gastric emptying scan again in about a month. Since Tucker seemed to have some sort of virus during the first one it's not really valid. They need to know more precisely just how delayed his stomach is. They will also likely do another endoscopy procedure to check on the inflammation in about 3 months or so.

 We have also decided to go ahead and get the g-tube for tucker. This means he will have to have surgery to put it in. We go for our surgery consult in a little over a week and we set a date from there. We have skated around this issue and gone back and forth, but after lots of praying, researching and gathering opinions, it is the best option for us at this time. Realistically we know it is going to take tucker a little while to get enough of what he needs by mouth so we are going to do what we need to. I feel like God is giving me peace about it and I know its the right thing. Surgery seems so scary but from what I understand the recovery time isn't too long and once he gets used to it, it will definitely be less invasive than having a tube in his nose. Speaking of, we had his tube replaced by the sweet nurses today and hopefully it will be the last time before his surgery.

So that is about what's going on with our precious tucker at the moment, still a mystery. On a positive note, he is much more active and happy and is now swallowing small pieces of food such as crushed graham crackers, crushed goldfish and his faves: mini m&m's and chocolate chips. He still has lots of anxiety around people he is not used to and especially any doctor or nurse who may be around. I'm the only person who can soothe him and the only person he ever wants to hold him etc. I of course love my sweet boy, but it makes it hard to take a break:) Every once in a while he is ok hanging out with his daddy:) This whole journey has been extremely trying for all of us, but I feel like God is really teaching me so much through it. My faith is definitely getting stronger. I try to stay positive and when I try to take control, I have to try and remember to trust in God and remember who is truly in control:)

We still have quite a road ahead but I feel like we are on the right path. The most important thing is that Tucker is consistently gaining weight and height and seems so much more like his happy old self again. His muscle strength is coming back and hopefully he will start walking soon! We have been so blessed by so many great doctors, nurses, specialists, therapists etc, so  I know we are in good hands. Thank you all for your thoughts and prayers, we appreciate every one and they are all very much needed:) Please continue to pray for our tough little man! I will continue to post updates and will post more about the surgery when I have the information.

Hope all have a blessed weekend! Thanks for stopping by:)

Love and Blessings,
Traci

Laid back weekend

We had a much needed uneventful weekend and we got it! Friday night we took the boys and had some pappasitos then we came home and got ready for bed. Tripp and tuck both slept great and we got a much needed full nights sleep! Those are few and far between these days:/ I always say God has been watching over us and knows exactly when I have come to the end of my energy reserves:) Saturday morning Carl had to go in to work so the boys and I hung around the house, did some cleaning then went and played outside. We ended up hanging out with coach until daddy came home. Then while the boys were napping, I snuck off to do a little shopping and run to the grocery store. It was so nice to get a few hours to myself, the fact that I got caught in the rain didn't even matter! Saturday night we had coach and aunt janelle over for dinner. We celebrated coach's birthday a few days late, due to the boys being sick and all the stuff going on with tuck. Coach was a sport and totally didn't mind! I made pot roast and mashed potatoes, one of his faves! Aunt janelle made an apple pie for dessert. It was a fun night:) Saturday night wasn't as restful as Friday but it was ok:) I got up first thing this morning and went for a nice long run. Then came home and showered then we went to run some errands. After errands and naps we played outside and Carl and coach set up tripp's new slip'n'slide and had a blast! (Will post some pics later:)) We ended the evening grilling some turkey burgers at coach's house. I also made him the cake he requested for his birthday since I couldn't do it before. Now we are winding down about to put the boys down and relax!! Such a great weekend!! Need some rest to prepare for our busy week!

Tomorrow we have an evaluation with a speech pathologist who specializes in feeding issues. Only downside is it is at 8am at the med center so tuck and I will be leaving very early! Praying she can help us:)

Thanks for stopping by, hope all had a restful weekend as well:) here are a few pics from my phone, will post some from my camera later:)



This is me giving Tripp a piggy back, while pushing tuck through the pasture! I was hot and tired but it was worth it for all the giggles and love I got:)





Brotherly love..



Our exhausted boys at 730 pm:








Goodnight and God Bless:)

Love and blessings,
Traci

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Some good news

Ok, so after waiting for what seemed like forever, our pediatrician called me first thing Friday morning to tell me what the hematologist said concerning Tucker's current labs. He said I will use his exact words, "dr. George said concerning his labs it looks reassuring" I think at that moment I breathed the biggest sigh of relief! I didn't realize I had literally been holding my breath! So at this point we don't need to go any further down that route. Praise God! The one thing they both noticed was tucker is still a little anemic. They were hoping the feeds would help with that. So now we have to start giving him an iron supplement as well, not a big deal!! And tucker did not run fever last night and slept all night!! It was a night we all needed!! Tripp slept well also and seems to be feeling better. Praise be to God! He always knows when I've reached the end of my energy reserves.

I also spoke with our GI yesterday. She did confirm that tucker has a significant gastric emptying delay and prescribed some medication to help with it. She seemed to think that because he also seemed to have a virus at the time of testing, that it played a role in the results. Apparently when children get viruses their gastric emptying slows down, that is why most kids don't feel like eating when sick. So he does have a delay but probably not as significant as results showed. The medication is still needed none the less. She also seemed to think the inflammation they found is contributing to it, so hopefully the nexium will help. This poor kid is having to take lots of different meds and supplements, but I guess the one positive thing about the ng tube is that we can just syringe the meds down the tube and not have to fight him to drink them. There's always a silver lining, right? ;)

Yesterday after I got the news I realized how much stuff I let go around the house. Our laundry had piled up and the house was a mess! But I hadn't even noticed because I had been so worried. My poor husband was wearing the same jeans to work and didn't say a thing! Needless to say I regained some energy and finished all the laundry yesterday! I also started cleaning up and hope to finish today. Last night we decided to meet carl after work at pappasitos. the boys did great and it was so nice getting out as a family. Carl is working today so the boys and I are flying solo this morning.

That is all for now. Hopefully I won't be updating again for a few days. We really need some uneventful, restful days:) hope all have a blessed weekend! Thanks so much for all your thoughts and prayers! They are being felt:)

Love and blessings,
Traci
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Tired

Tired about sums up the mood around here. Tuck already has not been sleeping well and poor Tripp has come down with a virus of some sort and has also been up a lot. So needless to say I am exhausted! But not just physically, mentally as well.

On to tucker. So yesterday we had his gastric emptying scan (i will explain results further down) and some more labs drawn. Apparently after our doctor talked with the hematology doctor down at Texas children's he decided he wanted more labs and wanted their team to analyze them and decide if they need to see us. This is so scary to me. We all know what they are looking for, the scary C-word. I am praying this is just another avenue they can rule out. My doctor, his attending and the general reaction of the hematologist think this cell count and immature white blood cells are his normal reaction to a virus. But I'm sure given the circumstances and the fact that he is an enigma, they want to look more in depth, which I'm ok with. Tucker had been running fever at least once a night for the past three nights, but Tripp has also been sick so this could very well be a virus in our house. In the past, and even during the time of his lethargy, tucker wasn't known to run a lot of fevers, just a few here and there so hopefully these are a result of a reaction to this virus. I'm calling it a virus because yesterday I ended up having to come back from downtown and take both boys to our doctor. Tuck had to go to check his blood count and Tripp needed to go because I wanted to make sure he didn't have strep. Well he didn't and the doctor just said it was a virus and would run its course. So we had another sleepless night last night:(

So the results of the gastric scan, our GI doc has not called with official results but I did ask our pediatrician to take a peek and see if the results were up. He did and come to find out, he does have a gastric emptying delay. Which basically means that his stomach is not draining at the rate it should at his age. So this can lead him to feel full and not feel hungry, etc. from what I understand this can be treated with medication and over time as the digestive system matures, it should get better on its own. So the hope is, once the medication starts working maybe he will be more motivated by his hunger to swallow. We shall see.

As for everything else, we wait. Right now I'm waiting to hear back from our pediatrician once he hears from hematology and they decide what we need to do next with them if anything. We go back to our pediatrician next week for a follow up on his white blood cell count and for me to ask a lot more questions;) we also have an EVAL with a speech pathologist who specializes in feeding. And of course all of our other therapy appointments, etc. it's exhausting on so many levels, but it's my job.

I want to thank all of our wonderful family and friends for all your help, support, texts, emails, meals, etc. I cannot express our gratitude in words. And please forgive me if I don't get a chance to get back to you right away, I'm trying but some days are more challenging than others and I just plain don't have the energy as crazy as that sounds! I appreciate you all and love all calls, texts, emails etc:)
A special thank you to my mom, my sisters, my dad, aunt janelle, and my father in law (who's birthday is today! We love you coach and I owe you a celebration and blog post dedication) for all their help watching Tripp and helping me keep my sanity through it all. We are blessed beyond words with the best family and friends!

So please continue to pray for tucker and all of us. Thank you all so much! I will update again when I know more.

A good friend sent me this today and its so true:

If you have faith when you pray, you will be given whatever you ask for -Matthew 21:22



Tuck was such a trooper at his scan yesterday, he was taped down to that little bed for an hour and a half



Happy boy today!



Poor Tripp doesn't feel well:/ don't see him laying around very often!

Thanks for stopping by:)

Love and blessings,
Traci

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