Thursday, May 30, 2013

Hematologist visit

Today we had our visit with the hematologist. The hematologist is also an oncologist, so of course walking into the cancer center with my baby was terrifying. The reason we were referred was because his blood counts have consistently been off and none of the other docs have been able to explain it. Our hematologist was great! After listening to tuck's long history, checking him out and interpreting blood results he had some news for us. Now, remember because tuck is such a hard stick, we had the anesthesiologist draw labs (while tuck was under anesthesia)
needed for immunology and for hematology even though we hadn't been there yet. It helped because this first appointment was a lot more informative than it otherwise would have been having to wait on labs. Anyways back to the news. Perhaps the best thing I've heard in a long time, coming confidently from the oncologist's mouth, was "it's NOT cancer, it's NOT leukemia and it's NOT a problem with bone marrow. I could have jumped out of my chair and kissed that man on the lips! Although, all the other docs didn't seem to think it was consistent with cancer, they've never actually said the words 'it is not'! So that was a huge relief.

He did have some info for us. He called tuck's condition iron deficiency anemia and anemia of chronic disease. This is not the underlying condition but an effect of the underlying condition. This is the reason why is his platelets are high. So he prescribed us a special kind of iron that will help this part of Tucker's condition. He also explained that treatment of this anemia would take a little while and we just have to be patient and administer the medication at the proper times etc. tucker obviously has some kind of chronic disease, the million dollar question still is, what??? We don't have THE answer yet, but we are getting closer and honestly sometimes knowing what it is NOT is good too:)

It has been a long bumpy road and we still have a road ahead of us, but I am thankful for the info we have. I will continue to praise and thank our God for guiding us through this process. I am exhausted 99%of the time but seeing my little boy improving gives me so much energy!! Good thing because Tripp has triple the energy of tuck and I combined;)

Speaking of Tripp, I have to brag on my father in law for a minute. He has been soooo helpful with Tripp through all of this. Today in fact, he picked up Tripp took him to visit his cousins, took him to the park then brought him home and let him play in the pool. Tripp had such a fun day that he came home and passed out! He is going on a 3 hour nap! We are so blessed to have our coach! Its obvious Tripp and coach are going to have a special bond:) thanks coach!

We are so blessed with wonderful family and friends! Thanks to all of you for your prayers they are working. Please continue to pray for our strength in forging ahead on our road for answers:)

Hope all have a great rest of the day:)

Love and blessings,

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Tuesday, May 28, 2013

Memorial Day Weekend 2013

We had a great memorial day weekend! Friday we were released from the hospital with tucker. Carl went on to work and my wonderful father in law brought tripp and came to pick up me and tuck. He is such a great man and always so helpful to us!! We are blessed with a great coach and grammy would be so proud!! After we got home, both boys went down for a nap and I was able to get in a much needed nap as well. Friday night we picked up some pizzas and had dinner with yaya and coach. We then took a walk down schindewolf lane and spent some time with aunt janelle, uncle jimmie and aunt carrie. They were all so glad tuck was back on the block;) Saturday was pretty laid back, as tuck was still sore from his surgery. So we hung out around the house, went to the grocery store and I snuck in a quick workout while tuck was nappng:) Once both boys went down for their afternoon nap, I went to have lunch with my mom and sisters to celebrate my little sister's birthday! I cannot believe she is 26!! But then again I do turn the BIG 30 this year:0 We had a great time celebrating and sprnding time together:) Once I got home we spent some more time outside then I whipped up some pancakes for dinner, coach was able to join us once again and we had a great time:)
Carl ended up throwing his back out this weekend, so he was hobbling all around! poor guy! On Sunday, when the boys went down, so did carl! That is a rare occurance!! So while they were all sleeping I took advantage and went out for a run. It was super hot, but super worth it:) I love running!! Anyways, after naps we headed over to my dad's for a barbque and some fun in the sun! We celebrated tiffany's birthday once again and enjoyed the pool:) Tripp LOVES swimming and did not want to go home! Guess we will be spending quite a few hours at the pool this summer;) Poor tucker couldn't get in the pool because of his surgery. It will be a month before he can be submerged in water. He enjoyed sitting in the shade with his mommy:) Sunday night, we were all exhausted, so it was early bedtimes for all:) Tuck hasn't been sleeping great so the more time we can get, we take it:)
Monday, Carl had to go into work for a few hours so we had a friend over for a morning playdate:) Carl got home around lunchtime and we spent the rest of the day playing outside:) Coach came over and hung out with us and we grilled some turkey burgers:) I also got to finally use my new whataburger spicy ketchup and mustard...I was super excited!! It's the little things;) It was a great weekend!! We are blessed by great family and friends:)
SinceI finally pulled my camera out again, here is a bit of a pic overload:) ENJOY!!

daddy and tripp feeding the fish and turtles

tuckey on our walk:)

our sweet boys

tuck is feeling much better!!
Tiffany's fun cake!

hanging out by the pool
had to change a flat tire on the way home from dad's! So I got all new tires this weekend too:)

tripp loves to help daddy mow:)

sisters celebrating tiffany!

mom and us:)
 chief swimming with the boys! tuck will be in there soon:)
helping aunt rat blow out her candles:)
 tuck enjoying the water yesterday...he has to wear onesies to cover up his tube:)
 my babies!
tripp's last day of school

tripp the stud at water day;)
Thanks for stopping by! Hope all have a blessed week:) I will be updating again soon, we have several doctors appointments and specialists this week...please continue to pray for our sweet tuck! love to all!
Love and Blessings,

Friday, May 24, 2013

Heading home

We are being released today! Tucker is feeling great and ready to play! We have actually had trouble trying to keep him in one spot, he is ready to move around but doesn't have a lot of sanitary space in the hospital:/ we will be going home with some pain meds to help with soreness the next few days but other than that we should be good to go:) in about a month when tuck's stomach heals we will go back and get his "g-button" put on in place of the tube hanging out. Until then, we have to be very careful not to let the tube get caught on anything or let tucker pull it out or we will have to come back to the hospital:(

Thank you all for your thoughts, prayers and well wishes! We appreciate them more than you know! We are looking forward to enjoying our weekend then next week we take our next step and go see the hematologist. Since they were able to draw all needed labs hopefully that will make our first appointment a little more advanced:) I will update as we get results of labs, etc.

Hope all have a happy long weekend!

Love and blessings,

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Tuesday, May 21, 2013

Tuck: surgery day

Today was tuck's surgery. We arrived at 9:30 am to get registered and checked in for our 11:30 surgery. However, after all the check-in process was done, we were told our doctor was running an hour behind schedule. Tuck was already getting irritable not being able to have his milk, so we knew it was going to be a very long hour! They didn't take tucker back until after 1pm. My mom, Carl and I took turns grabbing lunch then we waited. Carl and I even snoozed for a few minutes. They called us back to recovery around 3 pm. As soon as we walked in, I could hear my baby crying and saying "mama"! I couldn't pick him up fast enough. I rocked him and sat in the same chair for the entire 6 hours we were in there. That's right we had to wait 6 hours until a room became available for us. The nurses were great and were trying hard to get us in a room. They started calling tuck 'mama's boy' because he was so attached to me. They even called the floor we were going to be on and told the nurse to take the crib out because there was no way he would sleep without mama! I of course already knew that based on our previous stay:) so they let me and tuck climb into our bed and they wheeled us both to our room! I felt a little silly but tuck was happy and comfy and that's all that matters:)

The surgery went well and tuck has been in some pain. He is on morphine, so he has been in and out. The greatest blessing in all of this was that the anesthesiologist was able to get all the labs drawn that were ordered by the immunologist and hematologist! We have been waiting on these labs to move forward, but with tuck being such a hard stick it has been impossible. I have been praying they would be able to get them all while under anesthesia and they did!! Praise God! So hopefully this will bring us closer to some answers:)

I am sitting here now with tuck nuzzled close to my side holding onto his new football. We had some really good friends come up to visit and not only did they bring dinner and snacks but a football for tucker, which he will not let go! So cute!! Thank you Reid, Ross, Rachel and Lindsey!!

And thank you to all of you for all your thoughts and prayers. We are feeling them! I get chills and teary eyed thinking about all the texts, emails, Facebook messages and calls from so many! We are literally covered in prayer and it feels great! We are truly blessed and know God will heal our sweet tucker:)

Here are a few pics from the day:

Sweet dreams:)

Will update again soon:)

Love and blessings,

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Monday, May 20, 2013

Surgery scheduled

I have been waiting for the call to tell us what time Tucker's surgery will be. Well I got it and it will be tomorrow at 11:30am. We are supposed to be there at 9:30am. Now that the time is set the butterflies have started. I know it's necessary, I know it's temporary and I know it's not a major surgery. But it is surgery and tucker will be under anesthesia. I can't help but worry. However, I know all I can do is pray and know God will take care of the rest:) the surgery is supposed to take anywhere from an hour to an hour and a half then tuck will be in recovery for about an hour. After that, we will be put in our room. The average stay is 3-4 days so the doctor told us if all goes well we could go home on the third morning, which would be Friday. So that is our prayer.

However, in the past week we have been thrown for a few loops. Tucker came down with a bad case of hand, foot and mouth virus. We couldn't figure out where he got it. Then we remembered Tripp had a fever the weekend before and was complaining that his mouth hurt. After a day or so he was fine with no other symptoms. So I figured that was the source. When I picked Tripp up on Friday from his last day of school, the teacher noticed tuck's rash and told me that the hand, foot and mouth virus had spread through school "like wildfire". I was thinking thanks a lot for letting us know! Anywho, thus the source. Tripp had a very mild case but poor tuck had a HORRIBLE case with lots of the rash all over his legs. He was miserable and needless to say we had a very restless week:/ I was worried that this may postpone things but when I took him to the doc Friday it was already clearing up and by today he is almost completely healed! Thank God! But another loop this morning!! Tripp was up all night telling me his throat was hurting. We gave him some Benadryl to help him sleep but it did not work! Poor guy was miserable. Luckily tuck slept really well! He didn't run any fever but I thought I'd better take him in to be sure. So back to our doctor AGAIN. They swabbed him for strep, and yep, positive!!! Good thing is we got antibiotics and already started them. Bad thing is, I'm trying to keep he and tuck apart as much as possible and we've been washing our hands so much they might fall off;) I've also disinfected the whole house and washed all the sheets! We don't need anymore germs! The doc said as long as tuck is still acting normal and not running fever before tomorrow, he should be fine for his surgery. So that is our current prayer:) I'm ready to get this over with. I am exhausted!! That triple shot latte I had this morning was well needed and much deserved!

In other news, tucker had his abdominal ultrasound on Friday and I was able to talk to the doctor and get some results Friday afternoon. The good news is that there wasn't anything "bad" and it was pretty clear. The weird news is that tucker has what is called 'kidney duplication' which basically means a part of his kidney is doubled. This could be a negative thing and cause infection, etc, but in tuck's case it seems (and many others) it's just a weird thing. So that was interesting. The other thing was there was a thickening of the wall of the intestine. This could be part of the inflammation they found during the endoscopy, but it's something we have to discuss with our gastro doc and see what they think. So all in all, it was a good result. I was happy.

That is all the news for now. I will keep my blog updated with surgery results, etc. please feel free to text, call and email me anytime. If I can answer/respond I will:) we enjoy hearing from everyone and love to know how much prayer we have! Thank you all! Please lift tucker in prayer tomorrow for a successful surgery and a speedy recovery. Thanks again and blessings to all!

Here are a few recent pictures:

My sweet boy, last night with all that tape on his face!

We think he is getting closer to walking!!

So blessed by these three:)

Crazy chief! He and going were so gracious to accompany us to tucks ultrasound:)

Had a fun dinner date with my sisters:) much needed!

Tripp's water day at school, the boys were squirting all the girls... So funny!!!

Thanks again for stopping by:) we love you all!!

Love and blessings,

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Tuesday, May 14, 2013

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,

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Monday, May 13, 2013

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,

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Friday, May 10, 2013

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:)


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,

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It's a yes!

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