Tuesday, July 30, 2013

A rough morning

This morning we had our appointment to get Tucker's blood drawn for the next round of testing to determine if he has a certain disease. I ended up having to call their office yesterday because he had a horrible night Sunday night. He woke up just about every hour crying in pain due to his g button (which is not normal). The surgeons have now done everything they can do so I knew calling them would be pointless, so I called our immunology doctor. The reason being, they told me that with this particular disease, patients have trouble with skin and wounds healing. I ended up talking to the nurse and she told me that they would make sure and have a ostomy nurse (specialize in wound care) at the appointment to look at the site and see if she could offer any suggestions. I then wanted to double check that had the special team lined up to do the blood work, she told me she had a call in to them but couldn't guarantee it. I politely told her that if they couldn't be there I would be happy to come back anytime to get them to do it. I refuse to let my baby be poked over and over again, full well knowing they will not be able to get anything. We've been through this too much already. She assured me she understood and we would figure it out.

Fast forward to this morning. We arrived and one of our doctors came in to talk with us. We had to sign consent forms for them to do the genetics testing needed to diagnose. We went through lots of info and she gave us some handouts on the disease. Again, I will share the name of it along with more info later. After a slew of new information along with lots of questions (I'm infamous for my large array of questions) she informed us that the special team would not come until their nurses had tried to draw blood themselves. So I reluctantly agreed but told them that I would only let them stick him once and that would be it. They agreed. I had to leave Carl in the room for that one and I could hear my baby screaming down the hall. Breaks my heart every time, trying to be tough only lasts so long:/ anyways, they weren't able to get it and called the team. They said they would be up shortly. The formalities are ridiculous but oh well. the team came and got all the blood they needed quickly, thank God, and it was over. Poor tucker was exhausted and sweating and passed out in my arms shortly after. Honestly, I wish I could have passed out in the comfort of my moms arms too! We then had to wait for about an hour for the ostomy nurse to come up. She finally did and took a look at the button. She said it didn't look too bad and gave me some foam to wrap around it to help with what's called granular tissue that has developed around it. So we will try it and see if it helps.

We now wait. The results will take 4-6 weeks to come back. We finally get to see our GI again next week and boy do I have some questions for her;) we will likely be scheduling a repeat endoscopy, gastro and immunology are curious to see how the inflammation is and so am I. Other than that, I'm hoping for a little break from all the chaos:) we shall see. I just have to keep reminding myself that this is in God's hands. He so gently reminded me of that yesterday. In the midst of waiting on doctors to call me back to figure out what to do about tuck's button and pain, I was working on my daily bible study and at the very end it reminded me not to rely on humans to give us the answers, rely on and trust in God, ask him for the answers. At that moment, I hit my knees and did just that. And a peace I had been needing came over me. So thankful!

Sorry for the lengthy update! Thanks for checking in:) please, please, please continue to pray for our sweet boy! We believe in the power of prayer:) and I have to give a shout out to my wonderful father in law who has been toting Tripp around to swimming lessons and speech and helping out while we've been busy with tuck! I cannot express how blessed we are by this wonderful man. Grammy is looking down with a big smile on her face:)

Ok, enough chatter! Have a blessed day!!

Before all the trauma:(

Right after

Poor guy!

Love and blessings,

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Thursday, July 25, 2013

Here we go again...

So last week we had to take tucker in for more blood work, per the immunologist. He had some abnormalities on his previous labs and they wanted to recheck and see if further genetics testing was needed or not. They had a specific disease in mind. They called in the special team to do his bloodwork (since he is a hard stick and since they needed quite a bit of blood). We went in last Tuesday and it always amazes me how fast and efficient the special team is when drawing blood. They use an ultrasound machine to locate veins under the skin. Luckily, for my sweet boy, they were able to locate a good vein and get all the blood they needed within minutes. That was last Tuesday and we were told it would be at least a week before we got any results. In the mean time, Tucker's g-button has continued to be painful for him (which is not normal) and we have had to give him pain medication every night in order for him to get a few hours of sleep. I called the surgeon's office again yesterday to follow up on our concerns and he basically told me he has done all he can and that the pain could be due to the larger problem that we are trying to figure out. They checked it a couple weeks ago and didn't think it was infected. So I put a call in to the immunologist to see what they thought about the whole situation. I called several times and finally got a call back while I was in with the hematologist today, which I figured would happen:/ ok, I basically got an information overload today so I will do my best to break it down by docs today.

First, we went to our hematology doctor for our monthly check on Tucker's iron. The last time we went his iron levels had sustained but had not gone up like they were hoping. He told me to continue with the special iron supplement and we would see. Well today it was down. He also noticed that his white blood cell count was elevated indicating some inflammation. I told him about the g button site so he took a look. To him, he thought it looked inflamed and recommended I go see the surgeon. He called the surgical floor to see when someone could see us. So we go tomorrow to get that checked out. Back to hematology, if in fact the iron supplement continues to not work, then the next step is an iron IV infusion. It's risky but may be necessary at this point. He said he wanted to see us back in four weeks like normal and they would check his iron, if still low they will go ahead with the infusion that day. He wants us to get the button checked out first, the inflammation could be from that which could manipulate the iron levels. So I'm praying this is the case and we don't have to do the transfusion.

On to immunology. I was luckily able to call the department back and get directed to the doctor who called me right away. I got a lot of information, but in a nut shell: most of his labs looked good with the exception of the one they were concerned with. So we have to go back in next week for more labs for the genetic testing to confirm or deny the disease they are looking into. I am going to hold off on sharing the name of the disease because I myself am trying not to do much research until we know for sure. The doctor gave me a website with accurate information for parents in case I want to look into it a bit. Basically if he has it we will be looking at a bone marrow transplant. So I am praying this is not the case. But I know this is all in God's hands and I will try and remain peaceful knowing that:)

Like I said, I'm coming off of an information overload so I'm sure I will have more info to post later when I completely gather all my thoughts. Just have had several people ask and I figured it would be easier to post the gist of the info for now.

On a good note, aside from the pain Tucker is doing really well, eating better, getting closer to walking and building his strength back up. Please continue to pray for our little boy:) (and his mommy too;))

To end on a pleasant note, Tripp has been in swimming lessons for just a few weeks and has become quite the little fishy! I am so proud! We spent the day at my dads house yesterday and he swam his little heart out:) tuckey preferred to sit on the side and dip his feet in:) it was a fun day. I will end this post with some fun pics:)

Thanks again for all your thoughts and prayers! I will update again very soon. Hope all have a blessed Friday and weekend:)

Silly tuck!

My little dare devil!


Love and blessings,

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Sunday, July 21, 2013

Just some pics:)

I haven't had a chance to post some pictures from Carl's birthday celebrations last week. So here they are:) I will update my blog on tucker and our weekend sometime tomorrow:) for now, enjoy the pics!

We are truly blessed!! Hope you had a happy 30th honey, you deserve it! We love you to the moon and back! For now I will enjoy being in my twenties for a few more months;)

Thanks for stopping by, hope all have a safe and blessed week:)

Love and blessings,

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Monday, July 15, 2013

Carl and tucker

This past weekend we had a fun weekend celebrating Carl's upcoming 30th birthday!! We had originally planned to have a get together with family and friends on Saturday. I had reserved a big waterslide and everything! After our appointment with the immunologist last week, we knew we needed to cancel it. Until we have a few more blood test results we cannot have tucker around a bunch of kiddos right now:( so we cancelled. I felt bad, but luckily a couple of our great friends, lance and Michelle, had dinner with us on Saturday night. My mom and Keith came over and watched the boys while Carl and I had a fun date night at pappasitos with great friends:)
Perhaps the best part was when the waitstaff snuck up on Carl, put the sombrero on his head and started singing to him! Carl was loving it;) haha. Sunday evening we had a "block party" (Schindewolf family;)) over for dinner to celebrate Carl. We grilled burgers, picked up a cookie cake, Carl's fave, and had a great time hanging out! Thanks again to aunt janelle, coach, uncle Jimmie, aunt carrie and cousin shayna for celebrating with us! Our weekend didn't turn out exactly as we had planned but it was great nonetheless and we got to celebrate a wonderful man who deserves nothing less! We plan to have dinner with the family on Wednesday, which is Carl's actual birthday!

And now an update on tucker: tomorrow we head back to the medical center to meet with the special team to have Tucker's blood drawn. Please say a prayer for our little man. Pray they are able to be quick with minimal pain and get all the labs that are needed now. Thank you all very much! I will update with any new information as I get it:) for now a few pictures:) I took some with my camera from Sunday evening, but have not loaded them on my computer just yet, so a few from my phone:)

Date night! (And a photobomb from Tripp:))

Happy birthday seƱor!

Tripp and I made a quick pit stop while picking up daddy's cake:)

This kid has no shame! Yes he is doing his business facing the road! Haha

Coach came to the pool with us on Friday! So blessed with coach. I was able to sit in the shade with tuck and Tripp was able to have some fun:)

Sunday lunch dates

And this is a typical morning in our house, tuck hanging out on tripp's bed and Tripp wearing cowboys boots;) hehe

Hope all have a great week! Thanks for stopping by and thank you for your prayers:)

Love and blessings,

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Thursday, July 11, 2013


That about sums up how I feel about this week. So let me back up. We had a great weekend and I was looking forward to an "easier" week than normal with only one doc appointment and the usual therapies and swimming lessons. That is not how it went. First of all I managed to hurt my knee and was in pain for several days. So I had to make an appointment which of course landed on Thursday which was also the same day as tuck's appointment and tripp's swimming lessons. Then we ended up having to take tuck into the medical center on Wednesday to see his surgeon because his g-button site will just not heal. The surgeon was a little puzzled as to why its not healing great and prescribed us some ointment and some more pain medication to help him sleep, etc. lately his site has been hurting so badly that we have to be careful not to touch it or he starts to wince in pain. It's not supposed to be like that. He has also not been sleeping well due to the discomfort and pain. So we are hoping the ointment and pain meds will help.

Today we had our appointment with our immunologist. I have been looking forward to it, loaded with questions as usual and ready to hear the plan. Last week she called unexpectedly to check in with us. After talking to her on the phone she answered lots of my questions and it sounded like all of the tests they had been doing were coming back normal with the exception of one. She told me that they were going to try and draw blood during our appointment since they only needed a little to repeat this one test. She also said that there would probably be other labs/tests they would want eventually but would wait until he has his repeat endoscopy and is under anesthesia to draw the majority of the next round of labs (since he is a hard stick). So I was expecting this appointment to be pretty easy with minimal information. However, it was not so much the case. First of all Tripp came with us this time and usually doesn't. He didn't nap today so he was quite the little pill:) second, the nurses tried to draw blood several times and couldn't get one drop. So my poor baby had to endure more torture:/ while we were talking to the doctor I mentioned about Tucker's g-button not healing well. She asked to see it and started asking us more questions. She told us they were leaning toward a specific disease that is genetic. I asked her why and she told us that this specific disease has symptoms like inflammation, problems in the gut, abnormal labs, and skins problems such as wounds not healing properly (all which tucker has). Apparently it's a problem specifically with the neurophyls (spelling probably incorrect). She told us the name of the disease but immediately followed with "do not google it, you will see lots of scary information". I've learned my lesson with that and am going to try hard not to google it until we know for sure. I honestly couldn't even tell you the name but I think it's my defense mechanism at work. I asked if he does have it what if any, would be the "fix"? She said the most reliable one would be a bone marrow transplant. The whole thing terrifies me. I pray he does not have this. My gut instinct is telling me he doesn't but we will see. If the labs come back abnormal again then they will go forward with a genetics test which will confirm. I also asked that if he didn't have this disease what the next steps would be. She said there are lots more tests to be run, but to remember a lot of these are extremely rare and extremely hard to diagnose. So we just have to be patient. She also told me to do whatever I've been doing to keep him "in a bubble" meaning keeping him away from public places and kids especially as much as possible for now. Specifically because his immune system is so compromised and they are not sure why just yet. I also got the impression she said this especially because of what they are thinking it could be. I've been pretty paranoid about germs lately because of tuck but its about to get worse;) I really wish I could put him in a bubble:) I left there not feeling so great. I just wish we could know what's going on. But I have to continue to be thankful and faithful because tucker is so much healthier now! That is what gives me the most assurance in all of this.

So because they need these labs drawn soon, they were able to arrange a time for the special team to come and draw his labs next week. (They usually only work with patients in the hospital but are coming to help us, thank God). They use an ultrasound machine to find veins and have been the only people to be successful in drawing his blood. Thanks to our amazing doctor and her staff they were able to make this possible. So we go back Tuesday morning to get these labs. Please say a prayer for tuck on Tuesday morning:)

Sorry for all the rambling and run on sentences, just wanted to update while all the info is fresh on my mind. Please continue to pray for our sweet tucker and specifically for continued healing and answers. We have been blessed by amazing family, friends, doctors and general medical staff.

Hoping and praying for a laid back weekend!

Thanks for stopping by:) hope all have a fun Friday!

Love and blessings,

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Sunday, July 7, 2013

July 4th Weekend

We had a great long weekend! Although Carl had to work half a day Friday, we still had lots of good quality time:) We didn't do much, a lot of hanging around and spending time as a family. Perhaps the most exciting part of our weekend was that Carl finished installing the wood floors in our house with the help of aunt janelle:) I love them!! Anyways, we did a lot of swimming, way too much eating, playing outside, popping fireworks and being together. We are blessed! I will let the pictures do most of the talking this time.
 tripp loves playing with blue
 just hanging out
 sweet boy
tuckey loved the sparklers
 coach is a bad influence;) (yes, that's a beer can but it is empty! haha)
 me and my sweet boys
 sparklers! (we couldn't do too many fireworks because the pasture was pretty dry)
 keeping tuckey occupied while mommy cooks:)
 we had a family sno cone date:)
 my annual flag fruit pizza:)
we also went to baytown to play with our cousins last week too!
 because playing in boxes is so much more fun!!
 look closely, daddy gave tuckey a tattoo tonight:)
And have I mentioned lately how much I miss this lady. Today marks eight months that she has been gone. Feels like just yesterday she was here. I miss her so much more than words can say. We know she watches over us and that she is our guardian angel:) Love you Susie Q!! Miss you everyday!!! What I wouldn't give to have just one more conversation or just one more hug...one day:)
This week we get back to business. Tucker has an appointment with our immunologist. I'm eager to see the next steps. I did talk with the immunologist last week and got some info, but I will share all of it in another post after we see her in the office. Thanks for all your continued support and prayers. Tucker is doing really well and eating more foods. We pray for more answers but are happy to see our boy healthy again:) We are truly blessed. Thanks for stopping by, will update again soon!
Love and Blessings,

Monday, July 1, 2013

tuck update and our weekend

We had a super fun weekend, but first an update on tucker after our week full of appointments. Thursday we went to the hematologist. My sister kelly came with me and coach took care of tripp. After waiting for about 30 minutes they took us back and we waited a few minutes for the doctor. The doctor came in, talked with us for  bit and I asked a few questions. At that point he decided he wanted to draw some blood, but knowing what a hard stick tuck is, he said a finger prick would do. He then told us we would have to wait about 30 minutes for the results. So my sister, tuck and I went down to the cafeteria (which is operated by Luby's) and had lunch. It was surprisingly delicious!! Anyways, after lunch we went and got the results. Basically, what this doctor is monitoring is tuck's iron levels. He had prescribed us a special kind of iron last time we were there. Well, his iron hadn't dropped any but hadn't really improved any either. So we will continue with our iron and go back in 4 weeks. Friday we went to the gastro doc. Our regular doc is on maternity leave so we saw her associate until she gets back in august. Coach was a trooper and accompanied me to the appointment. Basically, all we found out was that tuck's weight has plateaued, which means he's not really gaining anymore. So they up'ed his feeds at night and told me to try and switch back to whole milk, which we did and he is drinking it again with no problems, Thank God! He is also eating a lot more and moving a lot more so these are all factors. We also spoke with a behavioral psychologist and the dietician as well. Overall, it was a good appoinment, just not much more information. We have an appoinment with our regular GI the first week of august, so I'm hoping for more of a plan then. We also go see our immunologist next week and I am eager to hear what their next steps are.
Ok, on to our weekend. Some sweet friends of ours gave us some astros tickets for friday night. We had originally decided that it probably would not be a good idea to take tucker. We planned on leaving him with my sister and taking tripp and coach with us. Unfortunately, things didn't work out with tuck, So I ended up having to stay home with tuck and aunt janelle went in my place. Tripp had a blast!! All he would talk about the whole day and day after was watching baseball! Carl sent me pictures throughout the night of the two of them, so I got to be apart of it:) Tuck went down early, so I did get a chance to relax and catch up on DVR, which never happens, so it ended up being a good night. Thanks again Mike and Tiffany!!
On Saturday we took the boys to the pool. It was the first time tuck had been able to get in a pool since last summer! He was unsure at first but had fun:) It was a great morning:) Saturday afternoon, we put both boys down for nap and then I went and had lunch with my friend traci. It was long overdue! Love you trace:) Saturday night we had an impromptu gathering with adam, jessica their kiddos, coach and aunt janelle. A guy that does work for Carl's company gave us a smoked brisket and some ribs. So I made some homeade mac'n'chesse and some cole slaw and we had everybody over for some yummy food! It was another fun night!!
Sunday we spent the day in the backyard. We got some snocones and swam. Carl hooked up the waterhose to the big slide on the playhouse and we put the pool at the bottom. Tripp had a blast and carl and I did too!! sunday night, we used more brisket and made some bbq baked potatoes and had coach over. It was a great weekend:)
Here are some pictures from our weekend, enjoy!
this pic is hilarious!!I'm about to go down the slide and look at what mr. tripp is doing;)

we had fun!!

our little man in action

here goes daddy too:)

mr. white boy is back in the pool!

love my boys!!

tuck and sweet lily

josh, judd and tripp eating dinner:)
my boys before the game

tripp with coach and daddy (tripp was over taking pictures:)) 

at the game

love my boys!

tripp had a blast! Thanks mike and tiffany!
We had a busy week last week, luckily this week it's not so bad! Tripp starts swimming lessons tomorrow! We are looking forward to a relaxed and laid back 4th weekend. Hope everyone has a great one too!! Thanks for stopping by and please keep tucker in your prayers, they are working!!
Love and Blessings,

It's a yes!

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