Monday, January 9, 2017

When a week long hospital visit is a GOOD thing

Hahaahaha yeah.  That makes no sense at all but it is true and has been true before.  As y'all know, Scott had a intestinal infection that lasted for about a week.  He was pretty much in the hospital all of last week. He came home yesterday (Sunday) and he's been okay. I did have to help him up this morning because he almost fainted. I know that sounds scary, but it is something that is not uncommon for him and I have delt with it sooo many times, I am used to it. I can usually tell that its going to happen so I am able to rush over and push him up against something to keep him from falling. A lot of those times I have had Noah in my arms so, I feel pretty tough about myself in retrospect. If I had arm muscles I would totally be flexing them right now but I don't - because I am a little stick.  Now that I just got off topic, back to why this last hospital visit was good. (side note: I am going to go back and fourth a lot because there is so much back story involved and some people reading this may not know all the details.) In November, Scotts GI referred him to the Mayo Clinic to hopefully be taken on as a case because his digestive issues are so extensive and because they don't know what to do with him.  We heard from the Mayo Clinic the week before Thanksgiving and they had said they were not taking any more cases on in 2016. That was not surprising given the fact that the holiday season was starting and I am sure everyone was taking vacations and just slowing down in general.  Scott and I were not sad about the letter but felt like it was on opportunity to pray about it and have the people around us pray for and about it too! Which we all have been. Last week when he was feeling bad, he couldn't make it to the hospital where his GI is so he stopped at the hospital near our house.  Stopping there meant he got to see a new GI and have a fresh set of eyes and perspective about whats going on.  The GI at this hospital talked with his regular GI and suggested that Scott be referred to UT Southwestern for two reasons, one, its closer and the second, he won't have to wait, UT Southwestern could get him in much faster.  Obviously that is a good thing. A great thing. An answer to prayers.  Such sweet news to share with all of the people who have been waiting, hoping, and praying along side us. Most importantly we aren't waiting on a letter that could be a "no" and not doing anything while we wait for a potential "yes" letter.

After I took Noah to pre-k this morning I was trying to figure out what I wanted to do with the few hours I had to myself and decided I would read the chapter I needed to read for bible study and then work on the questions Wednesday.  Much to my surprise in this chapter was the story that I talked about in my bible study devotional. At bible study the leaders group are asked to share a personal experience of ours that we see God's hand in. Mine was about my horrible few months of anxiety.  The story I shared was of Jesus walking on the water and Peter asking if he could walk on water too. And he does. Then Peter takes his eyes off Jesus because he gets distracted by the wind and he gets scared, so he starts to sink. I'm obviously paraphrasing the story but the point of it is so true for me and in my life. When I take my eyes off Him, I too, sink.  At church on New Year's morning, the pastor told this story to encourage the congregation about the upcoming year ahead. I remember thinking that morning okay, okay, I get it, I do! Keep my eyes on Him. Don't worry about whats happening around you, he will come and he will pick you up. He always does. You guys, it is SO important that we know this, HE ALWAYS DOES!






Thursday, January 5, 2017

It's FIVE days into the New Year....

And I am finally sitting down to type out how we are all doing.  This should explain everything about me as a person. I have had every intention to sit down before today and even planned some things to write about which have, of course, been forgotten. Oh well.  My dad always says I am a butterfly -floating from one thing to the next.

Our New Year festivities consisted of cuddling in bed with Noah watching a movie, probably Gremlins, because now he is OBSESSED with it.  He is constantly asking to watch a scary movie but he has no idea what that really means so Scott and I keep trying to think of movies that are "scary" for a four year old.  But its hard.  So we keep showing him movies from when we were young.  Someone once told me that its bad luck not to get a New Year's kiss so I made sure to kiss Noah and Scott and say Happy New Year to both of them.  Scott got a high-five too, and we laughed because well, WE MADE IT to see another year. There were so many days last year we both felt like we would not make it through the end of December.

Before Christmas, we sent out two college applications for Avery.  His heart is set on UTD because they have really good computer science and engineering programs.  A few of his friends are going there too, so that is a plus for him as well.  He's also excited that they have a Fencing team.  He had to stop Fencing this school year because the school he's at, has the hardest work assigned during senior year.   He simply could not keep up in school and Fence.  It is very weird for me to think that he's going to be in college in just a few months.  I'm trying not to hyperventilate thinking(typing) about it. I read a really great article awhile back about how motherhood is a constant laboring and birthing process with your children.  It is so true! There is all this preparation, waiting, and pain.  Then you push them out into the world. Again and again. I am in the "laboring" process with Avery right now.  There are so many questions on my mind about have I taught him enough, are there any more things I can do to help prepare him - stuff like that.  Knowing full well that the answer is NO to all of the things I wonder about for him.  I can however, teach him to do his laundry better, but I'm pretty sure that once he's on his own, everything will be in one huge load anyway.

Last month I got to spend some time with Brooke and her friends from college.  I love them all!  They are girls I would hang out with, so I feel like she's made some good choices. Ha! I remember the first month she was gone and how anxious I was for her and the conversations we had about life, (I told her every horror story I could think of about college and how to not be like that) and how she would feel different about things being away and coming home to visit.  And how that all of those things were normal and that they were okay and that she'd be okay.  I prayed with her on the phone when she felt homesick and encouraged her as best I could to make friends.  It was such a sweet thing for her to tell me that I was right and she was really okay. She is happy. She is SO okay that she's thinking about not moving home this summer and staying in Oklahoma.

Noah is teaching me to play Minecraft.  It has been hard for me to understand.  I really don't know why.  I get headaches from squinting at the screen trying to figure out what to do! But Noah LOVES that I try. Yesterday he asked me to play with him so I tried so hard to understand it and be intentional about it and learn from him.  It worked! We built a house, we have beds, a garden, and pet wolves!  He was so happy playing with me he was dancing the whole time!  It was cute!  Today at bible study, we combined music time and all the kids were together so I got to see him with his class.  Normally he smiles at me and says hi and will run up to me - today, he looked at me and kept on about his business.  I was a little crushed and his teacher laughed and said to me, he's come so far. Because he has! I am his person, I just am. It is so sweet but comes with challenges too. For example, I can't leave the room without him yelling for me or following me, because he "just likes me" or "needs to hear me." I usually just laugh and pick him up when he says those things to me. When we first started bible study he would cry and cry and cry and cry.  He had and has the most amazing and sweet ladies as his teachers.  They loved on him so much and made him feel comfortable to be away from me. The fact that he wanted NOTHING to do with me today, is a testimony to that! I asked him if he wanted to start a sport this year and named a few and he said Karate, so we are going to sign him up for it! I am sure its going to be so cute to watch!

I am doing okay, I had a little bit of anxiety this morning after telling all of Scott's family that he was in the hospital again.  He's been in and out 4 times this week, I think.  This has been one of those weeks where everything blends together. He stayed last night and they kept him tonight as well because he has an infection in his intestines and they want to make sure its totally gone before they send him home. I hate so much having to tell people over and over again that he's in the hospital.  I feel like I am breaking their hearts every single time.  It breaks my heart to tell them every time.  It's so awful.  Scott told me tonight that he had a nurse pray over him.  How amazing is that?! It was a sweet reminder at the end of a tiring day, that the community of believers is a beautiful thing.  People who don't know you, people who you've never met will just pray for you upon hearing about you just because we all hurt when someone else is hurting.  There are people in another country praying for Scott and healing for him.  That is very humbling.  That is grace.  That is love, y'all.



Sunday, December 18, 2016

It's been THREE years since I have posted on here! WOW! I just went back and read all of my old posts, I thought I had only written like one or two of them. It was fun to go back and see what was going on three years ago.  It was interesting to reflect on how much things have changed and how much things have stayed the same.  I have felt pulled for awhile now about blogging again and what I wanted to do with my blog. All the while knowing that the reason why I stopped blogging in the first place was because Scott was always sick, and quite honestly, I didn't want my blog to be about Scott always being sick.  I didn't want myself or any of the kids to read it and look back and be like OHMIGOSH dad was always sick.  Because truthfully, it certainly feels that way a lot of the time. Too much of the time.  Scott will always have problems, hospital stays, visits, "pump and dumps," those are just our "normal" things.

Looking back at all those old posts I see one common thing with myself, anxiety.  After this year of terrible anxiety, some days were so bad I could not leave the house.  I see now that probably getting some of the stuff I was feeling or just sharing about what we were going through - would have benefitted me and us so much more than not saying anything at all.  The truth is that no one will truly understand what its like to live with someone who is chronically ill unless they have lived it themselves.  People just do not understand why he goes to the hospital four days in a row with nothing coming out of it.  Why they don't keep him, why he's at home again, why they didn't run the same test that they ran the day before, the week before, the month before.  Why its so frustrating because WE NEVER KNOW AND NEVER GET AN ANSWER! It is always something, something new, try this drug, try that drug.  And they help, they do, but it is always short lived. Its heartbreaking, its fear inducing, its terrifying.  I am always scared one morning I'm going to wake up and he's not going to.  I am always scared that, this time, this hospital visit, is the one where they tell us this is it, there is nothing that they can do for him.  It never ends. Days start out well and end awfully, weeks can go by and he's so good and then he wakes up and is violently ill.

I am extremely proud of Scott and I admire him so much for always pushing through.  For going to meetings, for constantly working even when he is so sick.  For never giving up, even when it is obvious he wants to. For constantly fighting having to go to the hospital even when I am telling him to go. For constantly fighting, quite literally, for his life in order to provide for ours.  For putting his needs aside for ours.  I am amazed at how he always takes care of me even when in the hospital.  Calling, texting friends and family to have them check on me and pray for me or come be with me if I need it.  I am forever grateful for the people I have in my life who will drop everything they are doing to be there for me.  These people are the hands and feet of Christ.

Faith.  For those of you who don't understand or believe that there is a God, you can stop reading here.  I'm giving you an out to stop reading.

 My faith is the only thing that has been able to carry me through all of this.  It hasn't been easy at all, and sometimes I feel the enemy attacking me and taking my eyes off what is true.  Who is true.  But, I am able and capable with Christ to fight back and to also, let him fight for me, fight for us.  In some of my worst days, I have felt the prayers of my brothers and sisters in Christ.  I was filled with scriptures and songs those days and that helped me tremendously.  I was also able to share my experience with about 20 ladies I serve with at bible study to bless them.  They all prayed for me and I was able to share with them that their prayers were heard. God does not ever leave us and I now know that more than ever.

That is where we are at right now. Scott is in the hospital drinking contrast for a test to see if he needs to be admitted or not and I am at home with Avery and Noah praying about and waiting to see what will happen next.  This is what my blog will be about, how we live our life, our children, our faith through this, and God's mercy and grace through out all of it.  Not the lady with a sick husband blog, although I am sure that will be there too.

Lots of love to you!



Saturday, May 4, 2013

Hi y'all!

Obviously it has been awhile since my last post.  You'll know why once you get to the end.  It is going to be quite lengthy because there is a lot to share.

I am going to start with the less serious stuff - the kids:

Alec is doing well! He got braces in February, did amazing on his STARRS test and has grown a couple of inches so now he is starting to catch up with Brooke and Avery.

Here's a pic of Alec with his braces, notice that Brooke has them too! I love it! Twins! Ha!


Brooke is great! She is doing pretty well in school and next year she will start taking sign language which, I think, is so cool!  I taught Noah how to sign 'done' when he is done eating so, I am hoping that since she will be learning to sign that she can teach him a little too!

Avery is good!  He has all "A's" right now! He made a friend in our neighborhood, so on days when he has to walk home, he has a buddy. I am thankful for that.  He also did well on his STARRS test.  He is currently reading The Lord of the Rings trilogy.

Noah is growing and growing!  He is walking all around the house now getting into EVERYTHING!  Driving me crazy! He is talking more and more, repeating words and phrases back at us the best he can. He dances and sings when he hears music, which is so cute to watch. Here's a little secret: Noah has a tiny addiction to chocolate chips.  If Noah hears the crinkle of the bag he rushes over to me saying "mmm."  I take absolutely no responsibility for his chocolate chip addiction. It's not my fault. Not a bit.  ;)  Anyway, while Noah, Avery and I were spending spring break with my parents, his papa bought him a 72 ounce bag of chocolate chips. The bag was literally the size of him sitting down! 

Here he is so happy, happy, happy about the chocolate chips





Here are a few more pics of the kids.  None of Avery, because now he won't look at the camera, he looks away. He thinks he is too cool, I guess. 




Now on to the serious stuff.  The stuff that has kept me from posting sooner.  

Sometime in the middle of February, my mom found out that she had breast cancer. To be honest, I was incredibly at ease (for me) after my mom told me she had it.  I cried a little and my heart broke for her. Mostly because anyone and everyone knows that cancer is its own demon and can cause suffering and I do not want anyone to suffer. Not my mom, not anyone.  I had faith, strong faith, that everything was going to be okay with my mom. The Dr suggested a mastectomy but my mom asked if she could try chemo therapy first, an effort to hopefully - not lose a boob. I am happy to share that she is doing remarkably well.  Her tumor has continued to shrink throughout her treatment.  She is able to do a lot like sewing and cooking and has felt pretty good most of the time.  That is not to say, that she hasn't felt bad at all, but so far, she has managed to not be as sick as some people get.  Her biggest complaint has been that she is tired. We learned that more than likely her cancer is genetic (her sister had it too) and so after a few months we will know exactly which kind it is so that Nell and I can be tested for it, and go from there.  

The same week I found out about my mom's breast cancer, the mother of a girl I was really close to for quite some time emailed me and told me that her daughter, my friend, had breast cancer too.  She is 28.  That news disgusted me. I instantly felt the weight of the world, and all of its nastiness, bare down on my heart.  I cried.  I shared the email with my parents, who were visiting, and they cried. It was and is just sad news.  She is also doing chemo therapy and because the first drug they gave her didn't work they have moved on to a stronger drug.  I am wishing and hoping and praying this one does.  I would love, if you are reading this, for you to do the same for her.  

The last of the serious stuff I have to share is about Scott.  Last year after his gallbladder removal, he was fine for a few months and then all of a sudden he started getting sick and sicker and sicker.  His GI, kept assuring him that he was fine, kept prescribing him medications that would help him for a little while but would not ultimately keep him well.  While I was pregnant with Noah, he was in the hospital every month.  I am not kidding.  So far, 2013 had started out the same.  This year he has been in the hospital somewhere between 8-10 times.  I don't even know how many, its been so much. It really could be more.  In March, he had to go to the hospital while we were down visiting my parents.  He was well enough to drive home to only have to go to another hospital as soon as we got here.  That is what began our 2 month journey to where we are now.  We heard everything, from it could be this cancer or that one, to Scott was just a drug addict addicted to the pain medication they give at the hospital, to its stress, its diet, its what-ever-you-would-like-to-throw-in-there as a reason as to why he was getting sick again. Words like maddening to frustrating don't even begin to cover the emotional toll him being so sick AGAIN had on both of us.  He was getting to the point where he was convinced he was going to die and he was trying to get everything in order just in case he did.  Last weekend he was in pretty bad shape.  I had not seen him so bad since before his gallbladder had been removed.  He kept telling me "something is really wrong, I know it."  He was hesitant to go the hospital. Again. Because well, who wants to be told the same thing. Again?!?  He tried to tough it out but on Sunday morning I was like you need to go, you have to.  I took him in and the Dr told me before I left to bring Noah home, that he would find out and fix whatever was wrong with Scott.  This Dr was so nice, so compassionate and genuinely cared about what was wrong with Scott and wanting to fix it. I actually left believing that, that would happen, he would help Scott. On Monday they ran tests - all kinds of tests, they prepared Scott for the worst.  The whole this cancer, that cancer, this thing or that story he had become used to. Scott was just emotionally and physically worn out. This time, Scott's test results came back showing that the artery that runs near his intestines, was choking off his intestines and basically, killing him. His liver was failing, his kidneys were too. He was hooked up to all kinds of things to help get the two healthier, healthy enough for surgery.  The surgery, the Dr originally proposed, was separating the artery from the intestine, but after another MRI they decided that doing that surgery would be too risky. What Scott has is called Wilkie's Syndrome. It is VERY rare.  Only 500 people have ever been documented as having it and most of those were/are usually diagnosed with it after they have died.  During an autopsy. Pretty scary. Scott saw a new GI while in the hospital, who IS HIS NEW GI by the way, and together they decided that it would be best that Scott be on a feeding tube for at least the next month to "fatten him up" and see if that will help loosen his artery from his intestine. You see, most people have a layer of fat that protects their intestines, Scott does not.  He doesn't because he has been so sick that his body ate it away.  Kind of like an anorexic. His Dr is also talking about putting a stint in to keep his intestines open.  Scott has a follow up appointment in two weeks so good news should come then.  As of right now, he is doing fine, annoyed with his feeding tube, but he feels so much better and he is home. He is happy to be home.  He is also happy that he knows now what is/was wrong with him and now he has a plan. He is also very thankful.

Here are some pictures of Scott's intestines so you can see what I am talking about


Here is a normal free flowing part of his intestines:



Here is the obstructed one. If you look at the black, sliver-like thing under the 1974/2013 area that runs from the top of the photo to the bottom that is ALL the room he had open in his lower intestine.  All the bulge to the right, that is his choked off, swollen intestine. It looks like SO much fun, right!?


Before I end this I have to say, that my little Noah turned the BIG ONE! I am freaking out about this. He is not a baby anymore. He's a toddler. EEEEKK! We ended up celebrating Noah's first birthday at the hospital with Scott.  I took all the kids and brought ice cream because Scott could have some too. It was really sweet. Noah had a blast. We will probably have a very late party when things are more back to normal for us.

Alright friends that's what we've been up to.

Lots of love to you!








Thursday, January 31, 2013

crawling is just the beginning

Hi All,

We are all doing well!  Noah started crawling (I'm posting a video), he started feeding himself, and he has started to pull himself up on to his feet. He is obviously determined to get up and go! To be honest, we were not surprised that as soon as he started crawling that he'd try to be up on his feet as much as he could since he has had the desire to be on his feet for months!  I expect him to be walking very soon!

Here is the video I posted on facebook of him crawling! Once again, I do not know if it will work on idevices.

video

The older kids are all well! One of Brooke's best friends moved into the house next door - which is so cool and she is super super excited about that!  Alec is doing great!  He drew Scott a picture and it looked so realistic!  He is such a talented artist! Avery is good too!  He made the honor roll and Tuesday night he and I tentatively planned out his HIGH SCHOOL schedule.  I want to cry re-reading that sentence. Ah! 

Scott and I are well, he is busy trying to meet some deadlines for March and I am busy with Noah. I am attempting to teach him sign language because he has a little bit of a temper. Sometimes a little bit of a big one. The idea behind teaching him to sign is that, I would like to help him communicate his wants and needs better and avoid the fits altogether. But I haven't had much luck yet mostly because he would rather look at me like I am crazy than copy the signs. 

Here are some pictures of our past few weeks:


Feeding himself peas and carrots


Playing in his new toy from Aunt Audrey and Uncle Nick! 


Just being cute! 


Getting into his books in his bedroom


I will from now on try to get more pictures of the older kids on here, but it can be harder sometimes as they are not too willing to have pictures taken! 




Saturday, January 5, 2013

Happy New Year

I hope everyone had a great Christmas, as for us, here goes! 

Christmas was SO fun! We actually had a white Christmas!  It was awesome! Noah was totally interested in the snow (which was great!) and we went outside a few times so he could look at it and touch it. Scott even let him taste a tiny bit.  He loved it, but he likes ice, so how could he not?!

Here is Noah in the snow, my happy little bee


And here is the view from our back door, so white, so peaceful, I love the way outside smells and how quiet it gets when there is snow/when it is snowing.  Scott got the kids and I hot chocolate from Starbucks which made the day perfect! 


Brooke noticed that Avery is now as tall as her and we got a picture of the exact moment when she realized it - hilarious! 


All four kids are all well, enjoyed their break from school and got tons of gifts that they loved! Such lucky kids! 

Noah, Avery and I stayed with my parents for about a week and a half and we had a blast!  Old friends and family visited and we spent some much needed time with Papa and Mamoo! 

Here's Noah playing with Zoe and Kalista, they are the daughters of a girl I have known since 8th grade! 


LOVING on Julia, but in all honesty, who doesn't love her?!


Snuggling with cousin Hope


Playing with GG


Practicing crawling with Papa


The deer my mom and I started feeding which lead to more deer showing up to be fed, and now there are somewhere between 15-20 that now sit and wait to be fed, peering through the gate. Starving. With their babies. Making us feel like total jerks because there was only so much deer appropriate food in the house  we could give them. And believe me they stared.


Avery and his baby kitty!  She had to go back to my parent's house because Noah is allergic, actually, we all are.  But I am such a cat person, I'll suffer through it for the sake of having one.  However, it isn't an option right now until Noah gets bigger.  Bella (the cat) followed Avery around for 2 days after we got there and the first night did not move from the pillow next to him.


Noah with his uncle Al, holding a Mexican Coke with a big smile, because, Mexican Coke is the BEST Coke, duh. 


Playing under the Christmas tree.  Too cute! 


Visiting Papa at work pretending to be the boss 


That was pretty much the end of 2012 and the beginning of 2013 for us!  Here is hoping and praying that this year is awesome!  We have a lot to look forward to! 

OH! Noah got his first tooth New Year's day.  Then he got his second tooth, the next day. Um, yeah.  Big things are surely in store for us this year!  He is also, crawling in a one two pattern then stopping.  I think he is scared a little about going further. I don't think it'll be long until he's off getting into things.  

Scott and I are well too!  Other than trying to be better about staying in touch with our family (my goal), we both are going to try to live out the wisdom of 1 Corinthians 13 4-7.  Its a few verses that I am sure everyone knows but living them, that's the tricky part. Wish us luck! 

Well friends and family that's it for now!  Lots of love to you!






Thursday, December 20, 2012

figuring out how to spell column for this post was hard

I'm not kidding, I tried spelling it ten times, and I used the dictionary on my iphone and still could not figure it out!  I even asked Scott who has the super strength of being a decent speller and he tried three times and then said I don't know.  Finally I typed how I thought it was spelled into google and the predictive psychic genius that it is, knew what I meant. Yay google!  Google's psychic powers never disappoint, sneaky sneaky!

I hope everyone had a lovely and happy Thanksgiving, yes, I know it was like a month ago, but I still mean it!

Our Thanksgiving was great!  Everything went according to plan, no disasters, no drama.  Thank God!  I of course planned and planned so that I would not have to stress out because I do so very easily.  The entire family helped cook, my momma decorated and my mother in law cooked the turkey.  You have NO idea how much this made me happy.  I'm a vegetarian. The thought of having to touch raw turkey parts was not only super intimidating to me but also made me want to gag.  I am not kidding when I say I prayed several times hoping that I would not have to cook it.  Let me be clear - if I HAD to do so, I would have. I just did NOT WANT to.  I am super THANKFUL I didn't have to.  Noah got to play with his little cousin Essie and it was funny to see Noah's reaction to her playing with his toys.  I think he got a little jealous.

Here's Noah attempting to take his toy from her. Ugh.


All three of the older kids are doing well.  Avery cut off all his hair before Thanksgiving and Brooke had some dental work done to help pull a tooth up that wasn't coming up on its own.  Alec is continuing to work super hard in school to stay on the A-B honor roll.  

I found this little armadillo bobble head thing in a gift bag with all our wedding cards, that Scott bought each of the kids when we went to San Antonio together and it made me think about how Brooke, Alec and Avery have all grown up so much and changed so much since Scott and I first met.  They were all in elementary school.  Next year they will all be in high school. 


Here they are, literally, the day they met one another


And right before Halloween


I love them all so much! 

Noah's aunt Ginny bought him a pacifier with a mustache. Although Noah hasn't taken well to having a pacifier at all, he does like to stick it in his mouth of a few seconds and then spit it out.  I think he looks really cute with it! 


Okay so Avery and I enjoy memes, a lot.  Sometimes he and I will copy them just for fun.  One night we decided to put a piece of bread on our family cat, Bella, and of course she was completely dissatisfied with what he and I had done to her.  We thought it was funny though.


We put up our Christmas tree and Noah was super interested in it!  Here he is inspecting it!


We chose red and gold ornaments this year because red is my favorite color and red and gold happen to be the team colors for Scott's favorite football team.  Ten points in the cool wife column for me!

My parents will be here Saturday and we will begin celebrating Christmas, I am excited about that! I hope everyone reading this has a wonderful holiday!  

Lots of love to y'all!