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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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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