Family... Friends Forever

This morning, my sister-in-law, who also happens to be one of my closest friends, updated her Facebook status to read:

Even with a very early start to my morning....today is and will be a good day, just another day in paradise that I wouldn't trade for anything. :)

It made me smile, so I clicked the obligatory "like," and paused as I reread it. It struck a cord with me. This status is very typical of her outlook on life... laid-back, positive, with an "it could always be worse" attitude.

Honestly, I wish I could have more of her patience, her good vibes, her ability to calm those around her just by being in the same room... But, mostly, her ability to push worry aside and focus on the important things. 

Now, don't get me wrong... I've seen her upset, sad, and mad, but it's just not very common. And, when she has those brief moments of bad feelings, they pass as quickly as they come on.

So, why am I writing about my dear sister-in-law on my family blog? 

Because she is my family. My family is full of people like her. In fact, I married in to a family full of people with similar attitudes. In my own immediate family, I have another sister-in-law who is another one of my closest friends, and I even love her sister and their family. 

I have aunts, uncles, and cousins by the loads -- each of them a constant in my life; even as we grow older and get busier, we still manage to connect.

I've always known I've had the best dad; that's no secret if you've known me for a long time. I have an amazing step mom, mother-in-law (yep, I said - I love my mother-in-law!), and a father-in-law who is just as laid-back and happy as my hubby.

Some would say I'm lucky to love my step-family or my in-laws, to love my brother's wife, or my sister's husband. 

I would say I'm blessed. 

It is these people -- these family members -- who help me, Phil, Landen, and Grado on a regular basis. I doubt they even realize how often they've been there for us -- not just in the big ways, but in the small ways, too. 

We are a close family -- always have been, and there is not a day that goes by that I don't forget it. Sure, I'm lucky, but I'm so very, very blessed. So, today, I publicly thank my siblings and their spouses -- on both sides, "step-siblings" and all, my in-laws, my dad and step mom, my aunts, uncles, cousins, and grandparents...  without you, our lives would not be the same. At all.

I leave you with the wise words of my sister-in-law... 

Even with __(fill in the blank)___ ....today is and will be a good day, just another day in paradise that I wouldn't trade for anything. :)

Love you, K :)

My New Project: Building a CSF Chapter!

As you know, along with other health concerns, Graden has a Chiari Malformation; it is a rare brain defect that causes many more side effects than I will post here. Instead, you can visit my favorite links to research more, if you haven't already:

1. http://www.mayoclinic.com/health/chiari-malformation/DS00839
2. http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
3. http://www.chiariinstitute.com/chiari_malformation.html
4. http://www.childrenshospital.org/az/Site699/mainpageS699P0.html
5. http://www.csfinfo.org/
   (You can like the CSF on Facebook, too!)

These websites have helped us understand more clearly what Graden has and what his surgery (on June 10th) will entail.


Because of my strong desire to learn, Graden and I have decided to work with the Chiari & Syringomyelia Foundation (CSF) to open a CSF Chapter here in Fort Wayne. Believe it or not, there is not a chapter here or in Indianapolis -- two of the largest cities in Indiana.

In addition to researching websites, as I have shared Graden's story, I have met others through social media that have experienced the same health issues he has; it has helped us so much, and I want to offer that knowledge to others. 

In order to do start this project, I am working to raise $1,000! 

Graden will be participating in a "Solo-Walk" on Friday, July 5th. He will walk around the block in our neighborhood. Feel free to sign up to join him! As part of his recovery, his goal is to have 25 walkers (Team Graden!) and $1,000 in donations. (As of the date of this post, we have $255!)

The money raised will allow the CSF to grant me the ability to create a Fort Wayne - CSF Chapter, allowing us to continue to share our story, implement support groups for patients and their families, continue fundraisers for research, and establish education in our area!

If everyone one of my friends on Facebook gave me $1.00, I would have $1,060. :) Please, please consider donating to this great cause. So little is known about Chiari, despite being such a serious health concern. Feel free to share this request, my blog, and our story, too. The more we reach - the better.

CLICK HERE TO SIGN UP!

He finally asked the question...

Today, I brought Graden with me to work.

Before we headed into class, we needed to drop Landen off to catch the bus. As is usual for our Friday mornings, we were singing along with the radio (thus, my Facebook status about "gettin' jiggy wit it") and enjoying our morning commute. :)

Out of nowhere, Graden asked, "Why do I have to have surgery on my special brain, Mom?"
Before I could answer, Landen followed with, "How do they get to his brain?"

Without missing a beat, trying to think fast and carefully, I offered the following:

"Remember when you had your test in the big, circle machine (the MRI)?" Graden quietly confirmed with an "Uh-huh." "Well," I continued, "they gave you medicine to help you get really sleepy so you wouldn't get hurt or feel anything." Graden again confirmed, "Uh-hmm."

I could feel both boys staring at me, so I went further. "They'll give you that medicine again. You'll be asleep and they'll cut open the back of your head to see your special brain."

After another pause, and still feeling both boys watching me, I continued with my explanation. "The doctors want to see if they can fix the broken piece in your brain so it can work better."

While I was considering what to say next or if I should even say more, Landen tilted his head and asked, "How will they close it when they're done?"

"I'm sure they'll stitch it up." Hoping that was enough for him, I peeked in the rearview mirror to see how Grado was taking this all in...

After a few minutes of listening to a new song, he, very seriously, asked, "Will my brain still be special?"

"Oh, yes! Your brain will always be special."

"Well, okay." Graden said, nodding approval and moving on to the beat of the next song.

--

I share this because I thought it was amazing that Graden is not scared of being "cut open." He was more concerned about being exactly as he is now... special.

His comments, his focus, reminded me that I, too, should be focused on how special he is and will be... before and after this surgery.

So, today, my worries feel lighter somehow as my ornery, honest Grado teaches his Momma a thing or two. :)

Two Months of Worries.

I tried to post yesterday, but I couldn't find the words.

I started out quiet, moving through the necessary motions, smiling when needed, and faced my obligations with ease. In my office, three amazing ladies were able to see right through me and gradually got me talking. 

An hour later, I was feeling much, much better. 

Not better in an "allmyworriesaregone" way, but in an "Icandothis" way. 

Graden's surgery is in less than two months (yesterday was officially two months exactly). I can do this. I can make it through the next two months...

Do I have a choice? No, and I wouldn't want it any other way. 

I'm a mom before I am anything else. I can be a wife, a friend, a teacher, a writer -- so many things... but right now, Grado needs me first.

Yesterday, when I was talking with my coworkers, who have really become such good friends (thank you!), I mentioned one of the many struggles bothering me:

I can't show too much weakness, people will think I'm making it about me or that I truly can't hack the stress.

I can't be too strong, people will think I don't care as much as I should.

I can't be too optimistic... you know why.

I can't be too pessimistic. I just can't live every day like that.

Of course, you may ask why I care about what other people think, but I do. Always have. Always will. Don't we all a little bit, even if we say we don't? 

And, let me tell you, until you go through something that makes you question your every move, be careful to judge lightly. :) It's hard. Harder than I ever anticipated.

I want people to know that Graden is being taken care of by the best Mom for him. Am I the best? I don't know, but I do know that we work. Graden and I are a good fit -- a lot alike, which isn't always good, but we make it work. :)

Is he always happy, silly, funny, and patient? Um, no.

Am I always happy or patient? Hell no.

He is not perfect. I am not perfect. And, we're both okay with that. 

So, why do I feel like we need to be? 

Sounds so petty when I type it. But, this is my place to be honest, to share, to get through this, and to admit that I know better than to worry so much... 

But, damn it. It is hard.

I'm not sure what the next two months will bring, especially considering all the changes that have happened in the past two months. I do know, though, that I'm going to wrap up my classes, hang out with Graden, volunteer at Landen's school for end-of-the-year activities, and keep as busy as I can. I even have a new project up my sleeve (more info to come soon). 

So, as I posted Monday, the countdown has started...

Less than two months to go.

Graden's Surgery: Begin Countdown

I got the call confirming Grado's surgery.

He is scheduled for posterior fossa decompression for his Chiari Malformation on Monday, June 10th.

Let the two-month countdown begin...



*Click on the underlined words above for more information about the surgery and malformation.

Raising Money for Riley!

Riley Children's Hospital has become special to our lives. While we have only been a few times, we know our visits are about to become more frequent. 

During April, Landen's school, Shambaugh Elementary (a FWCS), will be collecting quarters to donate to Riley. From April 15th to April 19th, the students are even hosting a "Riley Spirit Week." 

I don't like to ask for money, but Riley helps so many people, including Graden. If you find you have a few extra quarters in your change jar, would you please consider sending them to Landen? He is really very determined to raise money for the "place that helps his brother." 

On a similar note, have you heard of Kate's Kart? They are an amazing group of people who provide books for children in the hospital. Each and every single time Graden has been in the hospital, he has had a visit from them. If you're looking for a way to help children, please consider looking in to Kate's Kart; they are always looking for books to add to their collection. 

A very sincere thank you! xox

The Next Step

Yesterday, we went to Riley's Children's Hospital and saw Dr. Ackerman from Goodman Campbell Brain and Spine. This was the appointment we have been waiting for during the last three months; once it finally came time to pack up and make the drive, I instantly felt nauseous.

The drive went well; Graden was happy as ever in the backseat with movies and Sprite. We played a few rounds of I-Spy and "Guess the Animal." We laughed as Grado would quote the movie he was watching or start a quick anecdote with "remember when we..." Those of you who know G know that means he's about to tell you something hilarious. :)

Upon arrival, we had to wait a bit to be seen, but we never complain. So many times I'm sure people had to wait because of us. And, as I became my usual anxious, fidgety self, I watched Graden with an increasing motherly-love. Isn't it odd how we are reminded of our love during the least opportune times?

Finally, we were called back to speak with our doctor. We knew this visit was to determine our next step based on concerns that have developed over the past eight months (from when we met Dr. Ackerman for the first time in August 2012), but more specifically since January. 

So, we went through the detailed results of the several tests Graden had during February and March, focusing specifically on the sleep study. We re-reviewed the MRI from our visit in January, and we began weighing our options. Gradually, I was becoming aware that she was leaning towards surgery as our next best option.

I think I went into Protector-Mode, with the help of some adrenaline, because I felt oddly numb to emotion and felt like I was researching options for what could have been anyone's son. Phil and I both asked questions, engaged in conversation, and agreed with our doctor, after a long appointment, that surgery was it. Brain surgery is our next step.

Will it fix him? Not necessarily.

Will the malformation go away? Not exactly.

Will it help? We hope so, but nothing is guaranteed.

So, why brain surgery? Well, because we at least have to try. Most concerning to the doctor are the issues involving breathing that are (most likely) caused by his Chiari Malformation. Additionally, Graden does have a diminished flow for cerebral fluid to and from his brain stem. At this point, because of their rapid development, we need to go through with the surgery as our best option to relieve some of the pressures and side effects in that area of his brain.

I realize this is a lot to read, to absorb, to understand, and to see... Graden does not "act" sick. In fact, he is "functional" - "normal" even... But, we see it. We know of his struggles. And, I promise you, they are there, and they are scary as hell. Watching your child have a seizure, stop breathing... even struggle to breathe is literally gut-wrenching. Heartbreaking. Frustrating. Sickening... I do not wish for any of you to see what we have seen with Graden.

What does the surgery entail? Well, this link: http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/chiari-malformation-treatment/ -- from Seattle Children's Hospital has the best description I could find of the surgery. Brace yourself. It isn't easy to read. (Here is another link that shows illustrations. It's more descriptive of adults, but the procedure itself is almost the same: http://www.mayfieldchiaricenter.com/chiari_surgery.php.

Obviously we have several concerns. But, we've looked in to this, we've reviewed our doctor and her abilities, we've researched, we've asked questions, we've debated, we've gotten more than one opinion... We know that it isn't a cure-all, a fix-it, or the end of his road, but we most certainly believe this is our best chance of helping him relieve some of these very serious health issues, primarily his breathing (central apnea) and flow of CSF (CerebroSpinal Fluid). Our hope is that this procedure drastically improves the issues caused by his Chiari.

Now, let me answer some of the most common questions we've been asked and respond to some of the most common responses:

1) This surgery has nothing to do with his other brain defect - the grey matter heterotopia, which causes the seizures and seizure activity. Dr. A did suggest, as did our Neurologist here in FW this past visit, that we may want to consult another Pediatric Neurologist at Riley that specializes in epileptic disorders and such issues as the seizure defect. We plan to do that soon.

2) We do not have a "percentage" of Graden's chances for success. It's based on each malformation, child, and other issues that may arise upon entering the brain. So, I suppose it's about 50/50. We do it and it works, or we do it and it doesn't work -- it can't hurt to try. Of course, there are risks involved with the surgery, but we, very carefully, weighed those risks to the risks Graden lives with daily without having tried the surgery, and again, we feel this is our best option.

So, surgery it is. We hope to have it scheduled in early June, as soon as Landen is out of school. We will be at Riley for the surgery, which lasts about 3 hours. Graden will be in recovery for about 5 days, as long as all goes well. During the 2nd week, Graden will be released, but he will still be recovering at home. After the first two weeks, and for the three months following surgery, activity for Graden will be limited.

As always, I will post details as I get them. I promise to continue to share our journey. So many people have reached out to me, us, Graden... It is beyond amazing. Your thoughts and prayers, more than ever, are so very appreciated. I try my best to think positive, but there are those days when worrying consumes me.

Today, though, I feel confident in our decision to pursue this procedure. I remind myself how far Graden has come and I find strength in witnessing his growth, his determination, and his care-free attitude towards doing what he needs to do to feel better. As usual, Grado teaches me how I should live life.

Thank you for reading this post today...

Control.

I did not mean to let three weeks pass before a post; my apologies.

Somehow, school (reading, writing, researching, grading...), laundry, organizing (cleaning, moving, unpacking), appointment-going, and flu-fighting (among many other things) stole me from you briefly.

Allow me to catch you up on our lives.

Our house, you ask? It's for sale. Still. Yes, I know... it's only been a few months. But, it's beginning (Who am I kidding? It did from the start) to drive me crazy. We just want it sold. No, we need it sold. No, you don't have to buy it, but I sure hope someone does. :)Soon. Our realtor - God love him - works hard; we are so lucky to have him!

The hubby, Landen, and I have all managed to be sick. Landen is doing much better since my last update and is currently enjoying his spring break. The hubby and I had a 24-hour flu, which was a nightmare. How is it that we manage to get the boys flu shots and forget about ourselves? Note to self for next year: get that flu shot!

Graden - knock on wood - has managed to stay healthy.

Since my last post on March 14th, though, G has had six doctor's appointments, some blood work, swallow therapy, a neuropyschology test, and I'm sure I'm forgetting something... all of these things followed the sleep study and the V-EEG. Tough kid. Stressed Mom.

We have been using the BiPAP machine, and it seems to be helping him sleep a bit better - although, there are still nights...

We haven't heard back from the bloodwork, which usually means it's okay. Maybe I'll call them today...

We received news from the Neuropsychologist yesterday. The good news is there are no concerns cognitively. (Duh. I knew he was smart.) :) 

The not-so-good news is that there are still concerns about his attention and impulse -- side effects from his brain defect, although the same could probably be said about me. Ha!

We will be meeting a therapist soon to work on "things." They seem hopeful that we can work on preparing him for the school setting... Can you believe my baby will be in Kindergarten in August and SIX YEARS OLD in November? Whew!

The biggest stressor has been the anticipation of Friday's appointment at Riley. We thought we sort of knew what to expect (how's that for confidence?), but so much has happened since our last visit -- three long months ago. Graden has had so many tests and new developments...

I'm just going to put it out there: We are worried. I am worried. Graden is... well, Graden isn't. He's his usual witty, energetic self. Thankfully. But, this time, that doesn't make it any easier.

I can't help feeling like I'm not doing enough. I want to handle it for Graden, carry the burden, the weight. I want to control it. To fix it.

But, I can't.

I hear myself making excuses. I try to be so patient, but I am not. I want answers. I try to explain what the doctors, nurses, and specialists say, what the tests results mean, but I can't. I can't stress the urgency in their voices to my family, my friends, Graden's friends. I hear myself downplaying, hoping with others, but I worry myself sick. Literally. He has obstacles, challenges. I see them. Every day, I see him struggle.

But, I can't fix it.

I try so hard to live "normally." I want him to play and just go about his childhood, and he does, but he's different. Every child is different (boy have I learned that!), and different is okay. Good, even. Graden, and his special-brain as we have all started calling it, is a "normal," ornery, little five-year-old who still gets in trouble for peeing on the toilet seat, sneaking a fruit snack, or not sharing with his brother. Honestly, those moments may drive me nuts, but I'm so grateful for them... they make us "normal." Right?

And, so, while I work through my own issues, I'll say this again (my fault, not yours) - I miss my friends, and I'm sorry I come and go. I will get better. I will. Thank you for continuing to ask me to do things even if I repeatedly cannot join you. Please know that there are just days, weeks that go by before I even realize that I haven't blogged, responded to an email or text, or called to make plans. Time is not something that has been on my side this past year.

Yet another thing I cannot control. :)

Raising good boys...

My hope in sharing things about my boys, especially Graden, is to share his story, his challenges, his journey. I never want anyone to think I'm searching for compliments or pity; hopefully, you know me well enough by now...

In all honesty, I spend more time than I should deciding what to share and what not to share. I'm sure I'm not pleasing everyone, and I'm sorry if I upset you... never my intention; I always have good intentions. Always.

Trying to raise "good" boys is a challenge, whether your son is healthy or not. Shoot, trying to raise good kids is work... we all know that, whether you're a parent or not. I could go into the "back when I was a kid" lecture, but I'll spare you. We all know things have changed; influences begin at younger ages. Regardless, I'm a firm believer in communication. It's what my dad always did, and I think I turned out alright. (Please refrain from commenting on that.) :)

It's not a secret that I talk to my son. I talk to everyone. I'm like an open book... you know when I'm happy. You know when I'm sad. I can't help it. Because of this, I've always talked to Landen at a more "grown-up" level than I probably should. But, why lie? He can always tell when something is wrong.

"Mom, do I have to get a shot today?" -- a question I constantly hear from both boys as we go to their several doctor visits.

I've always been - and always will be - honest with the boys. A straight yes or no works fine. If I must say "I don't know," I follow it with an explanation.

I'm not telling you this to persuade you to change your ways if you answer that famous question with a "we'll see," knowing fully-well that you're going for vaccinations. :)

Instead, I tell you this because I'm trying to show you that this is what I've had to do for my boys. All they know is a life of going to visit doctors' offices; Graden more so than Landen, but still... They've needed me to be honest. They've needed to know what to expect.

And, Landen knows what to expect. Landen knows more than I even realize. Rather, he understands more...

This week, he hasn't been feeling well. He went to school Monday, stayed home Tuesday, and went back yesterday. As many of you know, I was in the hospital with Graden from 9 am Tuesday to 11:30 am Wednesday for his test. Needless to say, it's been a long few days...

When I picked Landen up from school yesterday, he was in bad shape -- burning up with a fever, as pale as his white t-shirt, and shivering with the shakes from his temperature. He said he was exhausted and fell asleep on the 4 minute drive home.

As you can imagine, I got him home, called the doctor and made an appointment for this morning, got him into comfy clothes, gave him some medicine, and wrapped him up on the couch for the night. When I sat down with him and asked him why he didn't tell his teacher so she could call me to come get him, do you know what he said?

"Mom, I was okay. I didn't want to bother you, because I  know you needed to be with Graden."

*sigh*

I couldn't even reply. Of course I would've made it work; I would have gotten him from school, but he tried to be tough for me. For his brother. For his dad, who had already missed a few days of work and was working out of town. What was I supposed to say to that?

I was mad (the worried-kind-of-mad) at him for a second. Then, I was heartbroken. My seven-year-old was putting the feelings of so many others ahead of his own. And, this wasn't the first time...

Raising good boys... Yep, there's some hard work in there, but mostly, I'm lucky. I'm lucky to have these two. They make raising them easy.

Today, after his doctor's appointment, we talked some more about this. I think he understands now that it's okay for him to need me, too. But, I won't be surprised if he puts his little brother's feelings first again down the road...

And, that little brother, well, he did great yesterday. He missed his brother and wanted him to come play. (Don't let me fool you -- they still wrestle and argue like brothers, but they definitely love each other in a strong way for being so young.) Landen got to visit Graden, though, and that made his day! (Well, that and all the snacks and nurses he flirted with...) :)

Now, as we wait for Graden's results from the Video-EEG, I sweat. I saw the monitor, and, as hard as I tried, I couldn't help but stare at it often throughout the day/night. Have I mentioned that this never gets easier?

Remember, Monday we started with the BiPAP machine (I said CPAP in my last post, but I was wrong.) The machine was scary the first night; I had to choke back tears as he asked me to stay in the room until he fell asleep. Last night, though, Grado was very proud to set it up himself and fall asleep without Phil or me.

He, too, is a good boy. He never complains about any of this... he does what he needs to do and never ceases to amaze me with his constant optimism and strength.

How did I get so lucky? So blessed? So loved...

--

Now, we lay low. We rest so Landen gets better, and we wait by the phone until the doctor calls with the results from the V-EEG. As always, I will keep you posted.

 

Today is one of those days...

While we've been on this journey, I've tried my best to stay positive, strong, supportive, and open. I'm realistic --  not too optimistic and not too pessimistic. I try to focus on making sure everyone else is okay, especially the boys.

 

There are days, though. There are days when I just feel like shit - to put it bluntly, honestly. There are days I want to just quit, pack up, and have it all disappear. There are days I'm selfish and ask why. There are days when I'm mad... then sad... then mad again. There are days when the "I know it could be worse" and "God doesn't give me more than I can handle" phrases don't cut it.

 

And, I'm not sorry to admit it...

 

Today is one of those days.

 

Today, I'm not "feeling it" -- It's been one call after another (yesterday and today), and I just don't want to do anything.

 

Friends, I'm sorry I've been MIA. Family, I'm sorry I'm grouchy. I hope you can forgive me and ignore me. I'll be fine tomorrow. Today, though, I'm done. I couldn't even get creative enough to blog, so I'm copying the email I sent to some of you earlier today.

 

Here it is:

 

Many of you know we were waiting for the results of the sleep study. We got a call from Graden’s Pulmonologist early this afternoon with the results. It wasn’t good; in fact, they said it was worse than they anticipated. Graden had several “episodes” throughout the night - they even saw other abnormalities than what they were looking for.

 

We are waiting for a call for a CPAP machine (continuous positive airway pressure);  it has a mask that he will have to wear every night while he sleeps due to the lapses in his breathing. The machine will help regulate his breathing and control the pressure in his breaths. (For more information on Central Sleep Apnea, click here.)

 

She did say this would be something he would have to deal with forever.

 

It could be a side effect from his malformation, but it is more likely that he has developed this because of all his respiratory issues/trauma.

 

After therapy, I called his doctor at Riley. The Neurosurgeon said she wants to keep our appointment April 5th to allow time for the remaining test results. Then, she can decide if surgery will help these side effects; however, she may be leaning away from surgery until we can get more information -- these issues may really be because of his respiratory trauma, in which case, surgery won’t be beneficial. At this point, the risks may outweigh the results...

 

More side effects from his Chiari Malformation are appearing and seem to be strengthening as his brain grows. We knew this would be the case, but it is proving to be more challenging than we expected.

 

Additionally, his swallow therapy has been extended through September; today, they told us they heard some improvements. One small step, but we will take it.

 

On another note, Graden will be having a 24-hour EEG next Tuesday at Lutheran; Graden’s Neurologist is concerned about the increase in seizure activity in his brain. We have seen this increase during other tests, but we will be able to specifically focus on this during the EEG. At this point, this is a serious concern... seizures and breathing concerns are a bad combination, especially considering the growth and changes Graden has experienced.

 

We know this can be difficult to read and imagine. Graden is our ornery, athletic comedian and we joke that you cannot tell he’s “sick,” but please know that just because you don’t see it doesn’t mean it isn’t there. I am thankful that I have always been the one to see these issues (seizures, etc.), but now, Phil and others are experiencing it as well. I certainly hope you don’t have to witness his “moments” and appreciate that you all continuously think of, pray for, and send love to our little man. As we continue this path, as scared as we are for Graden, he is still “living normally” and is happy as can be! Our wish is that through this all he is able to be happy, even if it means he won’t be “living normally.”

 

Love you.