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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A little setback

So Sunday evening, tucker started vomiting suddenly. He only did once and seemed ok after. We gave him a bath and put him to bed. He was restless and woke up running a fever, so we gave him some zofran and Tylenol and put him back down. When he woke up Monday morning he was totally fine and in a playful mood. Last night tucker threw up again and started running fever again. I gave him Tylenol and decided I was going to take him to the doctor this morning.

We went to the doctor first thing and everything looked fine. He decided to do a blood test to check his counts. Well the white blood cell count was extremely high. So our doctor gave him doses of antibiotics to help and told me to wait while he interpreted the results a bit more. Come to find out, he found that he had some really immature white blood cells. He wasn't expecting to find some that were that immature. So he decided to call the hematologist at Texas children's hospital to let him look over the test and interpret it. He also said he was going to call the hospital to let the different teams of doctors know what was going on in case they wanted to do something else. So of course, my heart sinks and I immediately begin to think the worst again. Our awesome doctor could see the concern on my face so he assured me that he didn't think it was anything, just that he wanted to go through the appropriate channels to be sure and that "tucker has been known to throw us a few curve balls". We went home after that and they told us they would call with results. About 30 minutes later my doctor called me and told me he talked to the hematologist and that he didn't think the results showed any consistency with leukemia (huge sigh of relief) and that he thinks this is just tuck's body's way of dealing with fever. However he told our doctor what other blood tests to order. so tomorrow while we are at the hospital for tucks gastric emptying scan, we are supposed to go to the lab for more blood work. After that we come home and go back to our pediatrician to let them check to make sure the white cell count has gone down and determine if any antibiotics need to be given. They also may or may not have the other results back and if not should have them by Thursday.

I am trying to be faithful and know that God is in control, but it is so hard sometimes and I feel like I am on a roller coaster ride. I know I keep saying God never gives you more than you can handle, but woah am I getting close to the edge! My sister sent me an ecard that about sums up how I feel, so here it is with an attempt at humor to lighten up this stressful situation.





Please continue to keep tucker and all of us in your prayers. We love you all!

"This too shall pass"

"I can do all things through Christ who gives me strength" Phil. 4:13

Love and blessings,
Traci

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Our weekend

I will start with a brief update on tuck: he has been doing well. We started occupational therapy last week and I got some great tips to start using! We will start physical therapy this week. We will also be seeing a speech pathologist who is an expert in feeding issues next week. Nothing real new except tuck's GI Dr. Called me on Friday with the results of his endoscopy. Basically there was significant inflammation in his lower stomach region. It wasn't compatible for chromes disease, celiac or several other she mentioned. So for now he will be on an anti acid medication for probably the next 4-6 months at which time she will re-evaluate. Tuck has his gastric emptying scan on Wednesday and then we go see our GI again next week to summarize all findings and come up with a game plan. So our busy weeks of therapy and drs appointments have gone into full swing! Tripp also started speech therapy with a new speech therapist and we love her! She is truly a god send:) we will also be seeing her once a week as well.

Ok, this past weekend we did a lot of cleaning and organizing! I mean ALL weekend! Don't get me wrong, we had plenty of family time and outside time, but I feel like we had lots to catch up on and so much stuff to get rid of. We are also about to start some renovations in our house so we are preparing for that as well. I was so sore and tired Sunday night! Sunday we went out to see Grammy at the cemetery and were very excited to see that her headstone had come in, it is beautiful. Perfect for our Grammy, but at the same time so sad, it's weird but it almost seems to make it more final now:/ sure wish I could pick up the phone and call her, or walk over to her house and sit and talk with her. She always had a way of saying the right thing and calming me down. Although, I have felt her presence and know she has been around watching over tucker and all of us. Our own guardian angel:)

It was a good weekend. We ended the weekend with Sunday supper and enjoyed it with coach. Today we ran some errands, took Tripp to speech and enjoyed a chick fil a lunch date with my boys! Just what I needed before our crazy week starts:) now it's nap time for the boys and work out time for mommy:) here are some recent pics, enjoy!




Waiting for daddy to get home



Hanging out at coach's house



Just chillin in a box!



Reading books



We had lunch with momo and Blake and jake:)



Visiting Grammy:)



My two handsome lunch dates;) I'm one lucky girl!

Thanks for stopping by:) hope all have a blessed week!

Love and blessings,
Traci

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Tucker

Thought I would write a quick update on tucker after his endoscopy procedure this morning. I was initially worried about him being under anesthesia because while we were in the hospital he was sedated for his MRI and had a really hard time coming out of it. I knew at the time he was much more lethargic but I was still worried. The doctor was a little concerned about how he would react, but told us that worse case we would have to stay in the hospital over night for observation.

Well the procedure went well and he came out of anesthesia just fine, praise God! We had to stay for about an hour after for observation but they were happy to send us home:) the doctor said everything looked normal with the exception of some spots of inflammation. We won't know too much more until the paths come back which will be a couple of days. Tucker was a champ as usual:)

Some more good news we received came in a phone call as we were leaving the hospital. The genetics team called and told us that the results from the chromosome test came back and it was all normal! Praise Jesus. That was one of the bigger test results we were waiting on and it came back sooner than expected.

I also was finally able to get tucker approved to start occupational therapy for his feeding issues. I have had to spend lots of time on the phone talking to doctors, nurses, supervisors, managers, etc. all because of one questionable evaluator. But it was all worth it. We will start tomorrow morning. We will also have an evaluation next week with a speech pathologist who specializes in feeding issues. So hopefully this will help to get us somewhere.

As for our mystery boy, no diagnosis yet, but he is getting better everyday and for now we are focusing on feeding, getting this tube out and physical therapy. Thank you all so much for your continued support and prayers. We are feeling every bit of them and we are continually feeling Gods presence in all of this.

Thank you all again and a special thank you to our families who have really stepped up to help us out and help care for our big boy, Tripp:) we love you!!








And here's a fun pic of Tripp standing with aunt carrie's car...he loves it!!



Love and blessings,
Traci

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Another update

Yesterday we went for our GI appointment. It went really well and we learned that the doctor wants to run a couple more tests. The first one will be on Tuesday morning. It will be an endoscopy procedure. Basically, tucker will be put under general anesthesia then she will go in with a scope and camera and look on the inside of Tucker's esophagus to see if there are any ulcers or something going on in the lining that would cause swallowing difficulties. It is an outpatient procedure, as long as tucker comes out of anesthesia ok. Otherwise we would have to stay over night. So please pray that all goes ok!

The second test is an "empty stomach" test. It is basically a test using an x-ray to see and make sure that Tucker's stomach is emptying like it should. That one is scheduled for the following week.

We also got the ball rolling again to get Tucker's OT started. It has been such a horrible process all due to one questionable evaluator! But I have been relentless and pushing forward. 2 of his doctors and now the GI are all on board and agree that the evaluation was questionable. After talking with my insurance company, several doctors and several supervisors, we are hoping to get started again this week. Please pray that this happens! So many technicalities!!

As for the NG tube, we will have to keep it in as long as he's not getting nutrition another way. I am currently working on trying to get him to drink pediasure or boost. The doctor yesterday told us how much we would need him to drink by mouth in order to take tube out while we work with the OT. I have been putting little bits in his milk to try and get him to acquire a taste for it, so far so good! Again, please pray he will take it by mouth!

If we cannot get him to drink it by mouth and our OT (after working with him) thinks its going to be a while before we can get him to swallow food, then we will have to look into getting a G-tube. The G-tube is a tube the comes out of his stomach and is surgically placed. It sounds worse than it is apparently, and can be taken out as well. Obviously we would prefer that he didn't have to have any tubes, but if it is going to be a longer period the G-tube is the way to go. So it is essential that we see an OT ASAP, because a lot of these decisions depend on their assessment and work with him.

So that is where we are. Slowly getting there. It has been a rough ride, but I have been praying for peace and guidance throughout this process and have sure been feeling lots of your prayers as well so thank you!

Last week, tucker pulled his tube out! I was originally told by my pediatrician that I could bring him there and he would do it for me. Well the day it happened he wasn't there and the other doctors didn't feel comfortable and said it was against protocol. There went my safety net! My dad and I tried to do it since Carl was at work and it was traumatizing!! So wonderful cousin Amy (who is a nurse) graciously came out to help and I called Carl, who had to come home from work to help and then go back. I just knew I couldn't be a part of it again! So thankful for wonderful family and friends and mostly for my amazing hubby who has been so strong and supportive through all of this!

So please continue to pray for us and for sweet tucker. Thank you again for all you sweet thoughts, prayers, dinners, etc. you all have no idea how much we appreciate them:)

Love you all!




Crazy boy!




Dr. Tripp




Daddy's home!




Rough life;)




Chilaxin'


Thanks for stopping by!

Love and blessings,
Traci

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my iPhone

Home sweet home

We have officially been home for almost a week now. While it has been so good to be here, it has definitely been an adjustment. Tucker is much more energetic and alert and getting back to his playful self again. However, the feeding tube is taking some getting used to. I have to watch him much more carefully so he's not trying to pull it out. And since he gets his feed through the night, he wakes up a lot more because he can't move as much since he is hooked up to the pump. So needless to say, we are all very tired! I know this is only temporary but in everyday life it sure is challenging.

I have also been trying to get the ball rolling in the therapies tucker will be receiving. However, after one questionable evaluator gave her opinion and documented it on Tucker's file, she has left no room for our insurance to approve a second opinion and I am now having to try to talk to management and to our GI specialist next week to try and undo what she did. When I spoke to the therapist we would actually be working with, she told me she had been working hard on opening a spot for us, but now her hands are tied until we can get this straightened out. She agreed with some of what the evaluator said, as I did as well, but she also agreed that he needed to begin some type of feeding therapy right away. So needless to say, last week was very stressful, I felt like I kept getting knocked down. However, this mommy is not giving up and is determined to get this tube out ASAP! I have decided to do my own research and try to help him myself while we are in limbo. Please pray that we can get all this straightened out as soon as possible! As far as physical therapy, it went really well and pending insurance approval we will begin soon. Due to Tucker's lethargy for such a long period, his muscles are weak so we will work with PT to try and get him going again:) since we have been home he has resumed crawling and pulling up, but only to his knees. He is building up strength little by little! This is most definitely a challenge, but I have to keep reminding myself that God never gives us more than we can handle! And he sure has opened some doors for us through all this and has been working this out in his timing! I just have to remind myself to be patient sometimes:)

As for a diagnosis, we do not have one yet. We will still be working with our specialists starting with GI. We are also still waiting on some test results some that take up to 6 months to get back. So in the mean time, working on feeding and physical abilities are our main priority. They did rule out most of the major "scary things" so we are ok waiting it out now.

I cannot even begin to express how thankful we are for our family and friends. They have all really pulled together to help us out. My sister even put together a meal calendar. When she initially told me, I thought, we don't need that I don't want to bother anyone. However, it has proven to be so helpful and has taken such a load off of me. It frees me from having to go to the grocery store so much and from having to plan and prepare meals. I have been so stressed in trying to get adjusted with all of this and trying to be a good mom and wife, that this has been such a blessing! I cannot thank you all enough!! Not to mention all the help with Tripp and all the emotional support as well! I wish I could personally list each and every one of you here:) we are blessed beyond belief and we will get through this storm in our life!

Just wanted to give an update, sorry it has taken me so long! Thanks again for all your thoughts and prayers, we appreciate them!




Daddy playing dr before we left the hospital



Chief taking tuck for a ride



Love him!




Playing in coach's truck is so fun!



What a champ!



My sweet boy:)

Thanks for stopping by! Love you all!!

Love and blessings,
Traci

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Happy birthday Grammy!

Today would have been Grammy's 62nd birthday! We miss her so much but we know she's having one heck of a celebration in heaven with Jesus and her family:) we wish we could celebrate with her but we will definitely be celebrating her life!! We miss her everyday especially at hard times like we are going through now, just wish I could sit down with her and get her advice:) but I know she is watching over us and especially tuck! Happy birthday Grammy!! We love you!!


















Love and blessings,
Traci

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Another update

Ok so another little update. Tucker has been perking up since Friday! However, saturday morning he started vomiting and became somewhat lethargic again. They hooked him back up to the IV and also gave him some zofran (anti nausea meds) which seemed to help. After a while he perked up a tad bit again and started back on his night feeds. Sunday morning he started vomiting again and had to get a new IV in place (his other two blew) in order to receive some more fluids if needed. However we were able to get him to drink pedialyte so he hasn't had to get hooked up again. He was a bit more perky than he was the day before after vomiting. The doctors seem to think the vomiting is from him getting used to having a full tummy and more nutrition. Hopefully, that is the case. We did one more test early this morning and as long as tucker is more active and gaining weight and the test results are normal we may be able to go home later this afternoon. We get the results around 3 and will find out for sure. Carl went back to work today so tuck and I are flying solo. We've already worked with the PT, went for a walk, grabbed some lunch and now it's time for a nap.

And as of now, we don't have a diagnosis of any kind as to what has been causing tuck's lethargy and weight loss. All of the tests they have been doing are coming back normal, which is good but puzzling. We will be awaiting results of some of the tests that take longer once we get out. I know one of the tests is one genetics is doing which is a chromosomal microarray ( I think thats the name) which might tell us something. We are going to be following up with all of the specialists we have seen here, along with OT and PT. Hopefully, tucker will continue to improve:) we will be educated on how to use the feeding tube before we leave and we will have to put one in him! I'm so scared, but know we have to do it. They actually brought us a doll to practice on, not the same thing at all!! You will see a pic of tuck with the doll below:) first thing he did was pull out her tube! Smart cookie! Hoping he doesn't pull his out too much!! Life will be challenging with Tripp, tuck and a feeding tube but we can do it!! Hopefully not for too long:)

Thank you again for all your prayers and well wishes! We really are blessed with some amazing family and friends!! Hope all had a happy and blessed Easter:) it was hard not being able to be home and spend Easter with Tripp and the family, but he had a blast with his yaya, aunts and cousins:)

I will update my blog again soon, hopefully from home!!

Here are some recent pics of the little patient:)



















Here are a few pics my mom and sister sent me throughout Easter Day since we were missing our boy:)
















Thank you for stopping by! I will update again soon:) please continue to pray for our boy!! Thanks again:)

Love and blessings,
Traci

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