The decision...

There comes a point in one's life...

Sounds like I'm starting a novel, doesn't it? Today, though, it is exactly how I need to start this blog post, because I (we) are most definitely at "that point" in our lives.

Let me begin by telling you how the past 24 hours have gone. Yesterday, Friday the 25th, we had our appointment at Riley's Children's Hospital in Indianapolis. We were going for an updated MRI and a "flow study," after which we would visit Graden's doctor for immediate results and "the next step."

We stayed with my sister and her family on Thursday night so we could wake up bright and early Friday morning. She lives in Noblesville, which is about 30 minutes away from Riley's. We had a great visit; I got to love on my newest, little nephew and play with my sweet niece. They are so fun! Graden loved playing before bedtime.

The day started out okay -- nice and easy. We arrived, registered, and got "prepped." The doctor doing the tests actually married a guy from Fort Wayne and went to Notre Dame; so, of course, Graden found her quite delightful.

After promising me she would take good care of Grado, it was time for him to be put asleep. I'm telling you -- it never gets easier. This was our third MRI; each time, immediately after receiving the anesthesia, his entire body goes limp. What was different about this one, though, was that he received a gas instead of a shot. He didn't mind it -- at first. Usually, the shot hits him before he realizes what's going on with his body. Yesterday, as the doctor warned him it might start to smell funny, he panicked and yelled, "Momma!" He reached out for me, and all I could do was half-hug him (he was covered and buried in tubes) and remind him, "Mommy's right here... You're okay..." All the while, I'm doing my best not to choke on my own tears.  I knew he was under when I actually felt his hug weaken, which about broke my heart. Again, the doctor promised she would take good care of him, and we had to leave the room... With him on the table, unaware of the test about to start.

I know he's tough. I know that he has great doctors. I know that it's all for a good reason. None of that makes it easier or better or any less of a "deal."

So, we waited... and waited. I brought homework to read; after reading a page and rereading it twice, I decided there was no way I was doing anything that would need my brain to concentrate. How could I? My son was on a table to check whether or not his spinal fluid had enough room to flow...

Eventually, a little later than we thought, the nurse came to get us, "Graden's parents?"

"YES! Right here!" as we hop up, we look at each other and share a quick glance that contains that moment of worry. In seconds, and without words, we wonder if he made it through okay. He has had trouble with anesthesia before, and, clearly, his medical history always poses challenges. As I type this now, I smile at the joy it brings me knowing that Phil and I can share thoughts without words. I'm so glad I don't have to go through this alone.

Turns out, Graden did great and was sitting up, waiting on us to join him in his recovery room. What a relief... I cannot even begin to explain.

After drinking some fluids and being watched, we're finally on our way to the other end of the hospital to visit the Neurosurgeon.

Again, I wait for it to get easier, but it doesn't. Waiting to hear the results about drove me crazy. Luckily, concentrating on Graden helps. And, again, we hear, "Graden's parents?"

Except, this time, a quiet "yes" barely escapes. As we go through the motions - height, weight, blood pressure - Graden smiles. He's tired, but he's pushing through. He is truly amazing.

We don't wait long. The doctor comes right in and jumps into the diagnosis. She's good like that... straight to the point, proactive, and positive -- all good attributes in a doctor if you ask me.

She goes on explaining and must have seen the questions in our eyes. So, she calls us to her office instead of the patient rooms. She pulls the tests up on her computer screen and walks us through it, explaining in detail what she saw and pointing out her concerns. She even calls the radiologist while we are in the room so we can hear her getting a second opinion - or a confirmation of hers. Either way, I liked it. No, I appreciated it. Apparently, the MRI didn't show much change. Then, we heard it:

"He has a slightly diminished path here."

Doesn't sound good to me, but she followed up quickly with it "not being the worse she's seen, but it isn't the best, either." Again, she sees the questions in our eyes; we go back to the patient room to sit down and discuss the next step.

You see, Graden's malformation has always measured "on the line." Because of this, we haven't had to do surgery. His current side effects have been minimal. However, with the recent changes in his health, we can't be certain they are all side effects from the malformation or from previous respiratory trauma. Since he is "on the fence," she doesn't want to jump to surgery... brain surgery! Again, she's straight to the point and proactive. We may be able to fix this side effect without surgery. (The side effects being his swallowing issues [have I mentioned these yet?], respiratory issues - coughing, pneumonia, etc.)

So, long story short (ha!), she is recommending swallow-therapy. Sounds interesting, and I'm really not sure what it entails. But, I'm on it. I've contacted a friend in the Speech Therapy/Pathology field that I trust very much, and she has agreed to help me get information.

The downfall? We have three months to see if we can correct or notice an improvement. We have a follow-up appointment April 5th at Riley's. At that point, if our follow-up swallow study doesn't show an improvement/change after therapy, surgery will, most likely, be the next step. And, despite my doctor's amazing track record and positivity, the surgery (BRAIN!) is not easy, nor does it cure all. There are still possibilities and side effects and risks and...!

So, you see, we're at that point when we had to make a decision. And, actually, we've made a few in the past 24 hours.

First, we're pursuing the speech/swallow therapy. I've got the ball rolling and will be working all week to get this started. We will put all our effort into doing what it takes to see if we can help Graden  before surgery.

Second, we're selling our house!

Sounds drastic and "all of a sudden" in this post, but, without going into too many details, the doctors' bills are piling up. We've been struggling for the past year, and this isn't the first day we've considered it. We've weighed our options, talked with our family members, and made the decision this morning. The realtor, another friend, is coming Wednesday to help us.

Yes, we have insurance. But, insurance doesn't cover what we need it to cover. Sure, it helps... but, as some of you know, medical expenses are expensive!

So, we will be moving "back home" with Phil's parents. They are amazing - those who know them know they are great, easy to live with, and certainly have the space for us. Thankfully, they are able to help us and know we are doing this for Graden.

Is it hard? Hell yes. Embarrassing that at 32 years old I'm moving to my in-laws? Yep. Do I know, though, that I have to make a decision that will allow me (us) to afford the best care for my child? Most definitely!

I'm sure many of you, especially those closest to us, are not surprised. Many of you have been there for us as we've struggled. Many of you have seen the piles of bills that come in the mail. Many of you know I don't make a ton of money -- and I couldn't have a "normal," higher paying job any way -- consider all the days I would have to take off! I'd get fired!

Regardless, this will be a challenge. Today, we cry. Tomorrow, we understand. A week from now, we may cry again. A year from now, though, we will know we did what we needed to do in order to help our family. And, Graden - our family - comes first.

I end with this...
A sincere thank you. I never stop being amazed by the prayers, thoughts, calls, messages, texts, emails -- all of it. I could never have imagined that so many people -- some close to me, some I don't even know, some I've known for years, others I  have just met -- would think of my son.

As I've said before, I know it could be worse, and I never forget that, but most days, I wouldn't change a thing. I have every single thing I need, and I'm reminded of that with every "Momma!" every message, every tough decision I have to make... So, yes, I'll miss our first home, but I know this is the "next step" for my family -- the right decision.

Thank you for helping remind me that my decisions are (typically) the right ones.

After The Break: I'm Back.

I could start by telling you every detail of the past several weeks, including how wonderful our holidays were, but I won't. Instead, I'll get straight to the point: We had the best Winter Break ever.

Not only did each of us make it through several weeks without being sick (minus some sniffles and sinus headaches), but we got to spend more time together in the past three weeks than we had in the past three months. And, no, I am not exaggerating.

Some of you know, this break came at the perfect time. I reached my limit last semester and almost gave up. I needed this break in more ways than one...


I'm sorry that I haven't blogged any updates, but to be honest, I stayed off the computer as much as possible. See, the boys think I "do homework" when I'm on the computer. So, I stayed away. I played all sorts of games, read books, watched movies, cleaned house, and reorganized closets, drawers, files... You name it. I'm sure that doesn't sound so fun to many, but surely a few of you can relate to my need to "reorganize" things. It makes me feel put back together and helped me relax over break, which is exactly what I needed. Well, that and time well-spent with the boys...

I don't mean the kind of time where we sit beside each other while each of us does our own thing. No, I mean the kind of time where we give each other our full attention. It was wonderful... Good for my soul... And priceless. Absolutely priceless.

So, now, as we get back in to the swing of our schedule, I am back, feeling stronger and more relaxed than I have in several months. I actually feel prepared again, like I did going into 2012. I feel like myself... Mom, teacher, writer. I even miss my friends and am working on making more of an effort. I'm Aunt, Daughter, Wife, Sister. I'm happy, that's what I am.

All because of some "me time" and time with the boys and hubby. Amazing what a little love can do.

Well, a little love and no work. :)

As far as appointments go, we are heading to Riley on Friday, January 25th for another MRI, test, and appointment -- all in the same day, so we should get results quickly. Keep your fingers crossed and send prayers and positive vibes to Graden. As always, it helps keep us (me) going.

Happy 2013!