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!