Thankful for doctors and nurse practitioners today...

So, I went to the walk-in clinic this morning for this cough I've had, thinking I may have bronchitis or something. I figured I better get in and checked since I had the day off. The place was packed, so I had to wait. Boring, but I lived. The doctor/NP was great with me, but she said my chest sounded tight. One X-ray and another hour later, they call me back again to advise me to head to the ER. She said she saw some deflating in the sacs at the bottom of my lungs but wasn't sold on it being pneumonia. She wanted to be sure and apologized profusely for taking my time. I tried telling her it was okay and that I'd rather be sure than worse off later, but she seemed to still feel badly. 

I wasn't at the ER too long. The doctor there confirmed what the clinic had seen and explained everything to me. While I am sick, I'll be okay, and the doctor/NP did exactly what she should have. He told me once again how sorry he was... Like they did something wrong. I told him how much I appreciated him checking and explaining it all to me. He smiled, then told me how much he appreciated my words, because so often people get angry when they're sent in for a check or follow up, saying things like it's a waste of their time. 

That really bothered me... 

So, no, I didn't want to be at the doctor and hospital for several hours today, but I'd rather know what's going on and be able to be treated correctly than for her to misdiagnose or - worse - ignore it. So, to the lady who treated me today and followed through with something she knew wasn't right, thank you. I got the proper medication because you took your time with me and sent me to another doctor for immediate attention. 

Let's remember to be patient with one another, especially those people working to help us. 

Merry Christmas: We bought a house!

My last post talked about giving thanks, and we have some major thanks to give today...
As always, I wasn't sure how much to share, but it's time I tell you how grateful we are for some really amazing people.

Remember when we found out Graden had to have surgery? I'll never forget; it was January 2013. We made some major changes after that appointment.

You may know that we made the decision to sell our house and move in with Phil's parents. You may know that we lived with them for over a year, and you may know that we moved into our "new house" in February. What you may not know, however, is that we did not buy this house until yesterday.

At first, I was embarrassed. I didn't want anyone to know that we couldn't buy a house yet. I even blogged and talked with a few friends about it. When we found this house, though, we knew wanted to buy it; we just weren't sure we could make it work. We had worked for the last year to pay off medical bills while they continued to come in... I finished my Master's but wasn't working full time yet. So many things were still holding us back, and I was embarrassed. It took me a long time to accept that we didn't do anything wrong. In fact, we have worked so hard to get exactly where we are today. (We've had some great help along the way, too!) Are there still some hurdles to overcome? Sure. But, that's nothing to be embarrassed about. Someone along the way said, "It's not like you were out wasting your money." True. I could probably fund an entire wing of Lutheran or Riley Hospital, though, and I'm okay with that. Really. I can't complain about doctor bills; those same bills keep my boys, especially Grado, healthy and here.

Still, money was tight, and it wasn't a big secret. Insurance helped, but those of you with medical expenses can understand that they never cover everything, and somehow, all the "major" expenses are the ones covered the least, leaving you to pay the difference. Regardless, we managed and didn't do "without," but we didn't have a house, either.

In February, I blogged about finding this house. It was a quick, easy process. We signed "papers," got the keys, and moved right in within weeks of when we first looked in the windows.

But, we still knew we couldn't afford to buy the house just yet. I knew I would be looking for a new, full-time job, and we needed to finish paying on those last few (large) medical bills... so, you know what the sellers agreed to?

They let us pay rent and wait to buy! These sellers, the people who had this house on the market and who had been through ups and downs with trying to sell this house, let us wait. They knew most of our situation and, despite theirs, they helped us without hesitation or question.

I'm here to tell you:  If it weren't for them, we would not have this house. They gave us the best gift ever this Christmas. Thank you, Pickens family. Thank you. We will be forever grateful for your understanding and support.

And, I could write a book about my in-laws. Sure wouldn't have this house without their help, either. This past year, they've been our "go to" support in so many ways, and we will spend our lives making it up to them. We are forever grateful. Forever.

Another special thanks to our friend, George Raptis; if you're looking for a realtor, call him. I'll spare you the details of how great he is, because you only have to meet him once to decide for yourself. And... we have never met people who worked as hard as Greg and Jathni at Ruoff Mortgage. There's something to be said about working with people locally; they fought for us and did a lot of leg work to get us the best deal. The best part? They took time to understand our past and never made us feel like we were anything less than millionaires. Truly.

So, as of yesterday, December 23, 2014, we are happy homeowners - officially - once again.

Needless to say, this Christmas will be a special one for the Hirsch family.

Thoughts on Giving Thanks...

Date of last post:  July?! I can't believe it's been that long since I've blogged... So much has happened in four months. I've used social media as my way of updating, because I haven't made the time to sit still until this weekend... this Thanksgiving weekend.

Here's a condensed version of the past four months:  I got a new job in August. Actually, my hire date is my birthday: August 14th. It's cool that it's on my birthday, except that school started two days later. Needless to say, I had to get things together quickly, and, honestly, I think I'm just now getting to the point where I feel slightly organized. I won't lie and tell you the transition was easy, because it was nothing like I had hoped, which is one more reason why I haven't blogged. But, it has been so worth it, and I'm so glad I made this career move. I love being a teacher, my students, my coworkers, and my school, and I wouldn't change a thing about it. As you can imagine, working full-time was a major change for our family, but we're starting to get into a routine. I didn't leave IPFW all together, though, and am hoping that I can still teach a class or two throughout the year.

Phil is still working as hard as ever and has been super supportive of my stress-driven mood swings over the past few months. Thank goodness he is a patient man! In September, we celebrated our 10th anniversary! Who knew he'd keep  me that long? :)

Landen has grown several inches and has no problem telling everyone that he's almost as tall as them, especially his aunts. He's doing very well in school and is finding neat things to take interest in -- history, art (drawing and designing), and reading. I am also happy to report that he has been writing! I'm saving the stories he creates... they're funny and so creative! He will begin basketball season, soon, and with his growth, I can't wait to see how he has improved his shot. All in all, he's loving 3rd grade and life in general. He is so happy and sweet, and we love watching him learn and grow into an amazing personality.

Graden is... well, he's Grado. :)

Over the past several weeks, he's had a few appointments and tests. We had a few concerns about his brain (based on some of his comments and behaviors), so we got him in for his 6-month follow-up (medicine free, remember?)... it didn't go so well. He's grown, too, of course, so we were truly hoping that he was just experiencing some changes due to that, but the results showed that he's having several series of seizure spikes. So, it's back to medicine.

He started a few days ago and seems to be okay so far. It takes 3 months for the medicine to get into his system, which means 3 months of possible side effects and waiting. And, waiting is the worst part! The last time he was on this medicine, he was extremely sensitive; he would cry and couldn't tell us why. He would be tired without doing anything. It was frustrating for him and us. We sat him down to tell him what the doctor said, and he just looked at us and said, "Okay, if that's what it takes." Clearly, I took the news harder than he did. I know it's just medicine, and I really need to be thankful he's still here...

This morning I heard the terrible news that one of my former students died in a car accident last night. I didn't know her well, but we became connected via social media and remained in contact. She was young, beautiful, and had a contagious personality. I loved having her in class and am heartbroken that I can no longer hear about her adventures. When I hear stories like this, I want to squeeze both my boys and lock them in their rooms, but I know that isn't fair. Instead, we live each day and enjoy the moments we do have... we never know when our moments will be gone.

When someone asks me about Graden, I justify his health in weird ways... I always make sure that they know he's okay by saying, "Oh, you'd never know he has trouble," like I'm afraid they will judge him. Maybe I say it for myself, as a way to downplay how serious his illnesses really are? I just don't know why I feel like I need to make him "fit in" or seem "normal." Regardless, he is okay. He does fit in, and I think he's pretty normal. :) He's been reading nonstop, which is so crazy to me. Just one year ago, he didn't think he could ever read; he thought he was slow and behind all the other kids. Now, though, he's thriving in 1st grade. He's still a little rough and tough, but, honestly, I will take that over being down sick any day!

Overall, I'd say we've had an eventful four months, but we're starting to slow down and remember to enjoy each other. This Thanksgiving (and every day, really) we have a lot to be thankful for, so we made sure to give our thanks. We've discussed our gratefulness as a family, and I hope we never forget how far we've come. May we also never take for granted that our path could change any day...

Happy Thanksgiving weekend, friends. I'm happy to be back. xoxo

3 Months: Medicine-Free!

Grado has been medicine-free for three months today!

Overall, he's been doing great... So great, in fact, that there were days when I honestly didn't think about his health. I cannot explain what that feels like, but it's a mix of scary and relief. Scary because I don't ever want to completely forget and relief because it feels good not to remember...

Yesterday, though, we had a reminder that he lives with his "special brain" every day.

After a fun, eventful but relaxing, weekend, we were being lazy, sitting in our backyard, enjoying the beautiful, overcast day, and the boys talked Phil into playing catch with the football, which quickly turned into a game of "Tackle Dad."

Phil was easy; he always is. But, that didn't stop Graden from running to Phil and jumping in his arms. Phil, like any good dad, picked him up, turned him upside down, and spun him around... all in good fun, of course. Graden and Landen (and Phil!) were all smiles and their laughs were contagious as I watched safely along the sidelines.

A few minutes passed, and Graden walked over to sit down beside me.

He said the words that I hate to hear, "My brain is going crazy mom."

The yard went silent. Landen looked at me, and I turned to look at Phil. We all know what those words mean.

And, to be fair, I don't know if Graden really feels his brain going crazy, but who are we to question this kid? He knows his brain better than we do, so we listen. We don't have a choice. And, anyone who knows Grado knows he doesn't just stop or take breaks lightly. So, we sat there a few minutes, waiting...

I couldn't take my eyes off him. I kept thinking that he may be feeling a seizure coming on... And, instead of wrapping my arms around him, I had to put my game face on, knowing that I may be forced into quick action.

We tried asking him a few questions, "Where is it going crazy? Can you point to it? Is it like a headache? What does it feel like? Do you need some water?" He tried answering, but he can't fully explain it. After a few sips of ice water, a few hard blinks of his eyes, and some calming breaths, he seemed to be calming his crazy brain.

Needless to say, we sat in silence for a bit longer. I think Phil felt bad, but it's not his fault. We never know when Grado's brain is going to "go crazy." Maybe they were playing a bit rough for his head, but they really were being careful, "normal" boys... so, what do you do? I can't put him in a bubble forever.

Although, there are days when I wish I could...

So, despite being medicine-free for three months, we're still walking on this journey. Of course, most days, Graden is running, but he's so tough and grows more so each day.

Celebrating One Year!

One year ago, at this very moment, we let a stranger take our child away for a surgery that would change his life - that would change our lives.

On June 10, 2013, at approximately 7:30 am, Graden's Chiari Decompression began. We were left feeling scared, nervous, and angry. I remember the walk back to our family. Phil and I had to stop in the hallway to take a breath (literally) and compose ourselves a bit before meeting them at our table in the waiting area. We were able to tell them that only our Grado would be excited about the "cool masks" and "cute nurses" he saw. We couldn't help but smile despite the situation.

I'm not sure I want to relive that day, or the days the followed, but you can read the details here and here. Or, you can check out my blog posts from last June, but I just don't know if it's the same as being there, living it, watching your child go through it... I'd like to think I have a "way with my words," but even I as reread my posts, I realized I couldn't possibly capture all the feelings... There's just so many flooding me even as I type this a year later.

Today, though, you can't tell. You would never know what Graden has gone through if I didn't tell you. Of course, you would see his awesome scar, but he doesn't mind that. He's got a few more rules he has to follow, but, again, he doesn't seem to care too much. He believes his brain is special, but we know all of him is...

I look back at our lives over the past few years and wonder how we made it. Then, I stop and think about our lives since Graden was born and smile knowing how far he (and our whole family) has come. He will be 7 years old in November, and I cannot believe it. It's not a "wow, time flies" kind of disbelief; it's a "holy shit, this kid has gone through something every single year he's been alive" kind of disbelief. And, as always, I never take for granted that it could be worse, but I won't say it could have been better, either... it made Grado exactly who he is today, and I am okay with that.

Since his surgery, though, I can honestly say this has been his best year of health! He made it through winter with barely a cold, which is quite miraculous in this family. He's been off his medication for months now, and there have been no signs of compulsive seizure activity (although, we do have a follow up in a few weeks), and he ended his first year of schooling as a successful Kindergartner.

I think it's safe to say this kid is tough. He's certainly my stinker and thoroughly loves keeping me on my toes, but who am I kidding? I would not have it any other way, because as soon as I consider the alternatives - being sick or having seizures, I remember that being ornery and driving me crazy is so much better.

So, today, in honor of his one year surgery anniversary, we celebrate Grado. We celebrate his strength, his determination, his sense of humor, and his heart. But most importantly, we celebrate his good health! Here's to one good year down and in the books! We love you, Grado!

  

The last day.

If you would have asked me last June if I would have thought that we would make it through the 2013-14 school year, I would have told you - without hesitation - "no way." 

But, we did. Successfully, I might add.

And, in four days, we will celebrate the year anniversary of Graden's surgery. I'll save those emotions and reflections for another post.

Today, though, on the last day of school, I look back in awe of how far Graden has come academically. He's always been social - a little rough and tough, but social, nonetheless. I reread my posts every now and then, but I vividly remember writing about how he struggled in school. He was zoning out, unable to control his seizure activity and side effects from medication. He was doing okay with his school work, but he was just short of falling behind grade level. And, I was so worried about trusting his care to someone else...

Now, he reads, writes, counts, works through math problems, uses the computer, communicates, and follows directions at or above grade level... he is ready for first grade, and I cannot explain the relief I feel while typing those words. His level of maturity (again, still a little rough and tough) has grown, and he is becoming so responsible, especially in regards to his health restrictions and his learning. This kid has been through so much, and his journey, despite being on calm waters right now, is not over. The best (and worst?) part of this year is that he has learned why his brain is special. And, he truly believes that it's his brain that makes him the way he is. Little does he know that it's actually his heart. 

Then, there's my Landen. My big-hearted, witty, independent, young man who continues to grow up and become wise beyond his years. Sure, he's still only 8 years old and has a lot to learn, but he has such a determination to accomplish so many goals. I love and admire that about him. 

This, too, has been a learning year for him. He's been so helpful and protective of his little brother, he's had serious discussions with Phil and me about budgets (stemming back from why we sold our old house), and he's worked hard to remain on the honor roll while being a dedicated athlete. Plus, he knows it makes me happy that he loves to read, write, and draw... his notes to me are some of the best gifts I receive.

Just last month, he watched me graduate and wrote me this: "to my osum mom. happy grajooading day." (I love that he spells phonetically!) He drew a picture of me in my cap and tassel and folded it up into a secret note. I realized right then that all my complaining about school and struggles with managing my time as a mom, student, and teacher was completely worth it for my boys to see that the hard work paid off. (Now, if I can just remind them to go to college right after high school...) 

My boys are my life. There's absolutely no doubt in my mind. I watch them turning into their dad (with a little bit of their mom's attitude), and I couldn't be more grateful. Seeing them love, laugh, work and play hard... it reminds me why I fell in love with my Pheel. 

So, today, they left me, happy as two, ornery little boys should be, to have fun on their last day as a kindergartner and second grader so they could come home as a first grader and third grader. And, at first I thought something was wrong with me, because I am not sad about this - about them growing up. But, then I realized that this was such an important year in their lives that I could not be sad. I have to be grateful. Happy. Proud. A little excited, even, because I cannot wait to see what they accomplish next year.

First, though, we will enjoy the summer!

The boys on their first day of school (2013).

The boys on their last day of school (2014).

A New Chapter: CSF

In 10 days, I will be hosting my first, public CSF Walk! 

On June 14th, on the campus of IPFW, we will walk one mile in support, honor, or memory of members of the Fort Wayne community who are struggling, or who have struggled, with Chiari, Syringomyelia, or any of the related cerebral, spinal disorders.

Last year, we held a Solo Walk in honor of Graden on July 5th. Since then, it has become a goal of mine to open a Fort Wayne CSF Chapter. After the unite@night walks in June, I will move forward with the chapter process.

I have met so many people with these same health issues. I've been reunited with old friends. I've made new friends. I've met kids younger than my Grado who have had this surgery, and I've met people much older yet to go through the surgery. 

It's all been an amazing experience. Sharing stories and resources and hearing words of thanks from families who thought they were alone has made it all worth it.

They are not alone. We are a community, and this is our new chapter.

Talk to your kids. A lot.

It's been a long time since I've blogged about anything other than my boys. I suppose this will post will eventually get to them, too, but I have been thinking about this article all morning and need to write about it.

I'm not sure where I want to start, and I don't have all the facts or answers, but let's take a minute to consider what happened.

Two little girls... 12 years old - not yet teenagers - stabbed their friend (almost) to death.

They plotted and planned. They're being charged - as adults.

Their lives forever changed because of a being the world doesn't even know to be real.

We've heard this before... "God made me do it." "The devil told me to..." And, now, this.

If you read the comments (which are ridiculous after any news article, really), you would see things like: "This is what you get when you take religion out of schools" or one of my favorites: "where were the parents?"

Really?

Okay, I am a parent that sure as hell wants to know where my kids are at every single waking moment of the day, but get real. It doesn't happen. Granted, mine are younger, so I watch them a bit more carefully, but they still say things and do things when I'm not around.

Just a few weeks ago, I found out my sweet son was chanting "Sexy Lexi" on the bus with some older boys to a little girl. I was devastated and didn't even know he knew what "sexy" meant yet! I wonder if someone asked, "Where are his parents?"

I am right here!

Still, I send them out the door to school or sports or wherever, hoping that I've poured a solid foundation for their decisions. That doesn't mean they are, or will ever be, perfect.

I'm not saying that the parents shouldn't carry some blame... maybe they should. I don't know. I don't know them or their daughters. I don't know if they should have even been allowed in the woods or on the internet learning about this thing.

I am saying, though, that it is absolutely unrealistic to expect parents to have the power to prevent their children from making bad choices. We've all made one as a child (and I mean under the age of 18 if we want to get technical), and we know damn well that (most of the time) our parents had little to do with it. I, for one, know my dad is not to blame for some of the idiotic things I did that he knew nothing about... And, we had a good relationship. We talked about everything - even if he didn't want to hear it. Granted, I never stabbed anyone and I made bad choices much older than when I was twelve, but I just don't think it's fair for the question to always be "Where were the parents?"

I know it's not as simple as I'm making it out to be... I know there are some people in this world who shouldn't be parents or who are parents that didn't want to be... I have opinions about them, too. We all do. But, it is entirely possible that the parents are just as upset about their daughters' actions as the parents whose daughter was stabbed. I realize I'm comparing apples to oranges for some of you, but just consider for a moment that your child is the one who did the stabbing. What the hell do you do now?

There is no right answer. And, I can guarantee you feel guilty with or without the help of the media or someone asking where you were.

In turn, what do you do if your child is the one who was stabbed? Easy. You want the other children punished. Now those parents are going to get hurt twice - for not stopping their child from doing something horrific and by watching their child be punished. But, it's not a competition. No one wins and everyone loses. And, in many cases what they lose are their kids...

So, how about Jesus? I'm not 100% sure, but I would guess and say bad things have been happening in schools and with kids for many years -- with or without religion and whether or not we hear about them in the news. Kids rebel. Try new things. Experiment. Again, with or without prayer, faith, or any type of religion. And, most certainly, with or without their parents' permission and knowledge.

Does knowing where the parents are and having religion in school help? Sure, but it doesn't keep everyone safe and make the world perfect.

So, what do we do? Parents, educators, any one involved with a child?

We talk.

A lot.

We have to let our kids know that these things they're reading about, experimenting with, and participating in are dangerous. Not just a "you'll poke your eye out" kind of dangerous, but a life-and-death dangerous. Even then, I don't know that it will be enough...

I had never heard of this creature, story, or game, but you can be sure I'm aware of it now. And, as horrible as it sounds, I will use this poor girl's experience to educate my own kids. Just like I will with many other stories of kids dying trying to race a train or suffocate themselves... all horrible, scary, dangerous things that I don't want my kids (or any kids!) to do, but I won't just let them figure it out on their own.

I will talk to them. A lot.

Never and Forever

For the first time since his surgery, Graden finally asked a question I did not want to answer.

"When is my scar going to be gone?"

I turned to look at Phil, who looked back at me with the same surprise I felt.

"It's not going to be gone, honey. It will be there forever. It's what makes your brain special, remember?"

"Oh yea." He waited a minute, nodded, and whispered "Okay."

He didn't seem to distraught by our answer, but I knew he was thinking about what forever actually meant. He was disappointed, and it hurt my heart.

We had been talking about sports with Landen. It's his busy season as we move from baseball to football, and Graden decided that he really wanted to play football, too. So, he asked, "When does little kid football start?" We didn't consider where he was going with his question, because we thought he understood that he wouldn't be playing.

We told him football would be starting after baseball just like soccer and other fall sports. So, he asked if he could get signed up, and I answered him, a bit too quickly, "no, no football because of your head." Thus, his question about the scar.

I hated to tell him "no way" and "never," but it's true. He will never play football.

There are a few things he may never do, and that's okay...

It sounds so silly to be upset that your child will never be able to play a sport, and, my love for football aside, it is upsetting to tell your child there are just some things they cannot do. Well, could he? Sure. But, he shouldn't.

We've talked several times about how his brain makes him special, and I've even blogged before about how Graden's health issues still allow him to be active and communicate... two things I am thankful for every single day. Literally. Everyday, I wake up and know I am lucky to have a son with so many health concerns that can physically move and use his words to tell me what's wrong. I never take those abilities for granted. Never.

Still, though, I always thought I would be the parent who would say, "Oh, sure! You can be anything you want. Do anything you want! Go wherever you want. Travel. Learn. Explore. Play. Make memories and gain experiences."

And, I do say all that, but it's been revised. Edited. Rewritten.

I have to protect my boys while encouraging them to learn, experience, stumble and get back up. But, I cannot allow them to do things that could make the difference between life and death.

The worst part of that is that I know, fully well, that anytime they leave my house, yes even at 6 and 8 years old, it could be their last time. Any day anything can happen. In fact, I've seen that a lot this past week in the lives of people around me...

Now, I don't think these awful thoughts every single time they leave or go play outside... that's no way to live. But, it has crossed my mind on more than on occasion, and I have to be realistic, which in my case is a mixture of optimism and pessimism. (Hope for the best; plan for the worst? Or something like that.) While we have so many great days, we've also lived through many terrible days, and I cannot put him (them) in situations that are harmful. Yes, I know I won't always be able to prevent those situations, but right now, I have some control, and, as their Momma, I need that control. So, never football. Forever.

But... It's just football, though. Right?

Yes, I know. And, again, I know it sounds silly. Here I am feeling bad about not allowing him to go play football when there are so many larger issues in his life. And, Graden, well, he will get over it. He's already moved on... and he does love basketball, so we will stick with that for awhile (although it can be pretty rough, too; you're watching the playoffs, right?).

My point today? I'm not entirely sure, but I know that it's hard to tell your kids they can't do something, I needed to get it off my chest, and I also know that never and forever are very strong, serious words... even for a grown-up.

Changes

It's amazing what a difference 10 days makes.

Last week, I was so worried about how Graden would do at school after being off for break and struggling through the changes caused by the lowering of his medication, but that little stinker made me so happy! He came home with a "red" every single day last week! Even the teacher wrote him a note. For those of you who don't know, red is the top of the behavior chart, which means he wasn't just good (green), he was great! While he usually floats around the good colors, he hadn't earned a full week of red yet. Needless to say, we celebrated.

And, now, we only have 3 days left...

Easter will be his last dose. How fitting.

I stumbled across the date of his first full MRI this morning... 3 years ago, almost to the day.

What a ride it's been. So many changes.

I can't say that change is bad, because in our case it means growth. It means we are taking the next step -- or sometimes just another step. It makes me wonder why people are often afraid of change. I've heard it's because of the unknown, but don't they know that bad things can happen if you remain stagnate? Stagnate. I heard a great discussion about that word yesterday in a class studying communities. I'll refrain from getting sidetracked, but the talk made me consider how truly afraid I am of the unknown, but I how I am forced to embrace change.

Weaning Grado off his medicine is the perfect example. I do not know what will happen when it's completely out of his system, and I'd be lying if I said I wasn't worried, but I do know that this change is good right now. And, isn't "right now" all I can focus on?

The weaning process...

Today is the beginning of our third week of the weaning process... I'd like to tell you that it's been good - easy, even, but I cannot.

It's been challenging and annoying, quite frankly. :)

The first week, we didn't notice any real changes in Grado. He slept, ate, played, and acted the same... but, that also meant we still noticed the ups and downs of his emotions, attitudes, and frustrations.

The second week (last week) was spring break, and we hit a few bumps and barriers. Although we had a great week, he became more emotional, which they said could happen. So, let's hope the medicine continues to leave his system without much fuss (what I mean is any new problems/side effects). He feels guilty once he calms down, and sometimes, he can't even remember why he was upset in the first place. 

It's just so aggravating that he's so quick to change from happy to sad to angry to sleepy. Aggravating to him, because I can tell that it wears him out; aggravating to me because I can't do a damn thing about it! 
It hurts my heart. Literally.

Speaking of hearts -- Bless Landen's; he's being a great brother through this. We know how it goes -- the people closest to us are the ones that get "hit" the worst. So, Grado takes his frustrations out Landen and me. Phil is lucky and has a way of calming Grado. (And the rest of us for that matter!) :)

Landen usually gets it because something sets him off while they're playing.

I usually get it because I'm Mom, The Enforcer.

I try so hard not to get upset with him, but darn it! I can't not discipline him for acting out... I have to let him know it still isn't right and draw attention to his actions. But, I also have to be patient, and let me tell you... 

No, wait, I don't have to tell you. We all know how it goes, and it sucks.

Today, we dropped down to 3 mL, so we're half way through the process. Next week, we get to do 1, and then we're done... But, I can't say I'm excited, relieved, or looking forward to it, because we just do not know what the next step will be... and, I hate that part.

So, there's my update on this weaning process. Who knew it would be so consuming to stop medication? Goodness knows we've made it through so much worse. Deep down, I know I should stop complaining and ride along with Graden until we figure this out. So, that's what I'm doing (or trying to!).

This morning, though, I was struggling. I did not want to send him back to school after being off a week. When I gave him his dose, he smiled and said, "Oh! Look. I'm almost done." I had to smile, because he was proud and excited. I even thought I could sense some relief in his voice... and so, I, too, am feeling some of the weight being lifted. Finally.

And, no matter what changes he's struggling with, my tough Grado is still the one teaching me...

"My brain is going crazy, Mom."

"My brain is going crazy, Mom."

Words you never want to hear from your child, especially your child with a special brain.

But, what do you do? Tell him it's nothing. Probably just a headache. I mean the weather has been crazy; I've had a sinus infection for two weeks.

I could ignore him or think he's just trying to make an excuse for his bad behavior at school last week. I could consider that it's a growth spurt because he's hungrier, sleepier, and more emotional than he has been in months.

So, I called the doctor Friday morning after hearing the words off and on over the last week or so. Of course, there's more I'm not saying here -- like how he got in trouble two days in a row at school. How he's been in ISS (also twice). How he's had visits from the principal and has even had the pleasure of being called into her office. That's right, my Kindergartener has been in ISS and has been seen by the principal. Neat.

Of course, that's on top of his behavior at home, which has left a lot to be desired. He's happy, he cries, he laughs, he yells -- all within 8 minutes. It's not normal.

"My brain just goes crazy sometimes, and I don't know why. Here and here (he points to places on his head), Mom. It's weird."

Well, okay, then. My response? "Well, your brain is special. Maybe it needs a break. Like a rest? Just take a rest for a minute."

What the hell else do you say? Why, yes, dear, you're acting crazy. Can you make it stop? Um, not quite. Not to my six-year-old son; you know, the one who has already been through more than many people deal with in a lifetime.

So, again, I called. They called me back. And, VIP-status, I suppose, but we got right in on Monday -- today.

We went. We're home now. It was a fast visit, and I'm not sure I'm 100% satisfied with the plan. For now, though, I will go with it, because... what else can I do?

The point:  He shouldn't notice much of a change, but we're going to work on weaning him off his medication. This could potentially open the doors for seizures to happen, but we have to see how his brain responds since he hasn't had a full seizure in years. Once again, we rely on the risks and benefits. They're always so close on the scale, but it's tipping more towards benefits... so, we try.

Let's just hope it helps him and his crazy, special brain... 

Missing December and January, Celebrating the Love in February

Hard to believe my last post was for Thanksgiving... way back in November. Two full months have passed, and a lot of exciting things have happened to us.

I'll start with Graden and work my way up. To sum up the past few months: He is doing great! Our last tests were in December and the results were mailed to us, which never happens and is an indicator that nothing had changed. These results, of course, are good news because they show that Grado hasn't developed any new symptoms, and, while he isn't "getting better," he isn't getting worse. So, we've achieved our goal of "maintaining." I cannot tell you how it feels to type that sentence.

If you remember, our transition to Kindergarten was stressful (for me and Grado). His teacher is experienced, patient, and full of ideas for helping him learn, and she has done exactly that. In October, she was noticing some absence seizures; we were able to address her concerns right away with our doctor, and, lucky for us, it was only a matter of increasing Grado's medicine. He had grown so much since he was first prescribed his medication that he was no longer receiving the right dosage. We also began talking, and encouraging him to talk, about his surgery. He was struggling with the idea of needing to protect his "special brain" to an extreme -- pushing kids away who got too close, crying when someone hugged him too hard. Needless to say, Phil and I just didn't understand that he was as upset and confused as we were at the idea of him having, and recovering from, brain surgery. It's scary for us adults, and we just didn't know how he would react. He's smart, though, and we should have known he would need answers to his questions and concerns. So, we had several days and weeks of chats to allow him time to actually let it sink in and grieve. I'm happy to say, he understands much more now, but he still wants to protect his head (not as extreme as before, though), which is fine by Momma. :)

Now, three months after these "fixes," Grado is doing well. Of course, we still have some issues revolving around frustration (that turns into some minor behavior trouble), but overall, he is doing well and has grown tremendously in his academics. Remember, we're talking about the kid who wanted to spell his name "G," because "that's what Papaw calls him." Well, now he's writting his first and last name and trying to read everything! And, most importantly, he isn't behind... he's working right along his classmates, and that is thanks to his teacher, if you want my honest opinion. :)

Grado also started basketball in January; it's his first time playing a sport and being part of a team. He's amazing and loves it! I'm not going to lie to you -- this was not an easy decision to allow your child to play a sport only 7 months after such a serious surgery. But, we just couldn't justify not letting him try. He plays with kids who are 5 and 6, so they aren't rough. Of course, accidents can still happen, but we have to trust that he will be okay. Basketball is not on his list of restrictions, so that also helps, unless he ends up being drafted to the NBA, at which point we will have to kindly decline their offer. :) I struggled, though, worrying about what other parents would think (at least the ones who know Graden's background), and I had to push the worry aside and decide to do what was best for our Grado. Phil helps coach, too, so he's with him at every game and practice. Regardless, I just can't keep him in a bubble, especially as he gets older. I'm sure I'll blog more about this as he grows...

Then, there's Landen. He's grown up so much over the past several months; I've noticed a lot of changes this school year, too. He was on the honor roll again, after a bumpy start to the school year. It wasn't that he didn't know what he was doing; it was more about taking the time to actually do the work. Plus, 2013 was a rough year at our house... I think it got to him; although, he would never complain about what we needed to do for his brother. He, too, is protective of his little brother's special brain. :)

Landen is also playing basketball, and we had no idea he would love it as much as baseball and football and be as good at it as he is! He's had a growth spurt, so his height has been a bit of an advantage, but he's also got a good shot. He's going to be one of those kids that's good at all sports because of his coordination, so I'll be excited to watch him decide which he likes best and where he chooses to excel.

Other than sports, Landen is also our creative, "hands-on" kid. He's constantly wanting to draw or build something. He's also been helping me mentor at The Brandon Foundation one day a week. He loves it, and I love that he knows why we go there and that it isn't just for "fun." He thinks he's helping the kids and Caty, a friend of ours and the founder. I'm just as proud of him for working with the foundation as I am for making good grades and scoring points.

I can't say too much about Phil, because all he's done for the past few months is PLOW, and he's about ready snap. He works long, hard hours and days; riding around in a truck. Pushing snow is for the birds. I tried being a "good wife" and tagged along a few trips, and I couldn't hack it. It's back and forth and back and forth and bumps and holes and more snow and cold and back and forth and BLAH! But, he doesn't complain (much!) and likes his job. So, we're thankful for him. The best part about this winter is that because he plows and works through the nights and early mornings, we've gotten to spend some days together with the boys on snow days; they've been fun!

Lastly, there's me. I've also been busy the past few months, but in a much different way than I've ever been. Usually, I complain that I don't have time for anything, but that has changed!

I completed my Master's degree in December.

Yes, you read that right... I am done! I cannot tell you how much weight was lifted from my shoulders the day I submitted my last assignment. I did absolutely NO work over the holiday break, and I loved every single second of not having something to do. I didn't realize just how much stress and tension I had carrying around the weight of homework for the past 6 or so years, as I finished my Bachelor's and went straight into the Master's program. Don't get me wrong -- I absolutely loved being a student. I just struggled being a student, mom, teacher, wife, and friend all at the same time. Now, I feel like I have the time to be all those things (minus the student!). I'm even working on getting my teaching license and considering teaching high school, too! (I'm sure I'll keep you posted.)

I also had surgery mid-December, which caused me to be out for several weeks. It was pretty major, but it couldn't have gone better, and it's made me feel so much better -- that's all that matters.

I knew I wouldn't blog in January, because as we transitioned back to school, I wanted to focus on my teaching and writing in other ways. I didn't want to feel pressured to set a New Year's Resolution, because I know 2014 is the year for me to "wrap up" some of my unfinished projects and goals from previous years' that have been on hold. And, I'm excited about that... for so very many reasons. Don't worry -- I'll be blogging about them as the year goes by...

But, the best news for today's post?

WE GOT A HOUSE.

Yep. We sure did. Many of you know we've been living with my in-laws for the past year (can you believe it's been over a year?!), and it's been great, honestly. Our goal was to begin looking, buy, and move throughout summer and early fall, so we could be settled for next school year. But, things happen. And, they happen for a reason.

We had looked at houses about two years ago (before we knew about Graden's surgery), and we saw a few we really liked, but we knew we couldn't move yet -- and it worked out that we didn't! But, wouldn't you know, about two weeks ago, we heard about a house that was still on the market because a sale had fallen through; it was in the area we wanted, in the price range we wanted, and had all the details we wanted. So, just because we could, we drove by... it was the same house we had loved a few years ago! I had to ask about it, because we know the sellers, and just maybe...

The rest is history.

We're signing the papers tonight, getting the keys, and moving in this weekend.

Fast, I know, but I'm excited. So, so excited!

So, that's it. There's our past few months full of good news and progress. We knew 2014 had to be better than 2013, right? Here's to celebrating the love of Valentine's day... as we move to our new home. :)

Thankful for Thanksgiving...

Getting cuddled up to watch the Macy's Thanksgiving Day Parade is a Hirsch Tradition.
I'm so thankful for them!

 

During the month of November, I enjoy reading the Facebook posts stating what people are thankful for; despite the grief they may get for "not being thankful everyday," I think it's a great way to share with everyone the things you most appreciate. And, I have no doubt that most people are thankful several days throughout the year... not just during November. So, in the spirit of Thanksgiving (and my failure to jump on the Facebook-thankful-bandwagon), I decided I would share...

In honor of the 30 days in November, here are 30 things I am thankful for:

1. Phil. I know it's cliché, but he is most certainly my best friend. There is no doubt in my mind that he makes me a better person. I've said it before, and I'll say it again: he is the calm to my chaos. I truly do not know where I would be without him.

2. Landen. My oldest son, who definitely suffers from being the first-born just like his momma, is kindhearted in the most literal sense, giving, loving, athletic, creative, and smart. He makes our family stop and take time to remember "moments." I look forward to watching him grow into a young man.

3. Graden. My youngest son; he's tougher than any of the rest of us in a way I've yet to figure out how to define. Grado is his own person with no fear of what others think and enjoys making others smile and laugh, which is easy for him because he's so darn funny! As we wrap up 2013, though, we remember how far he's come and far he has yet to go, and we smile in awe and pride knowing he is exactly where he needs to be...

4. My Dad, Brother, and Sister. The four of us continue to grow closer and closer over the years despite being so very close already. They are my rocks and my biggest supporters. I can't stress how happy it makes me that my brother and Phil are so close, and my dad and sister love him just as much as they love me! They each make me so proud, and I'm proud to say that nothing can separate us. Goodness knows I could dedicate an entire blog post to just them, so I will stop with this: we're the four best friends anyone could ever have. (Ha!)

5. My Mom- and Dad-in-law and my Step-Mom. Who gets so lucky with their in-laws and step-mom? You hear stories about having to deal with either, but not me. I couldn't have hand-picked a better set of parents or wife for my dad. Each of the three of them love me like I'm theirs, and I can't imagine not having their love and support. The laughs and memories we share are priceless to me.

6. My brothers-in-law, and my sisters-in-law. I've got 2 brothers-in-law, Derek and Al, and I adore them both. They're amazing uncles to my kids, and Phil and I love being with them both -- it's always a good time! As for my 3 sisters-in-law, I have to say that I'm luckiest girl ever! Mindy, Kristal, and Kelly are some of my very closest friends, and, again, I couldn't imagine my life without them. They're never afraid to tell me what they think and put me in my place, and I love that about them. We don't go very long without talking to each other, and for that, I'm most grateful.

7. My step-sisters. I have 2: Ciera and Marisa, and while they're younger, they still show me and my family love in ways that step-siblings don't have to, especially because they entered my life when I was already "grown-up." But, despite our differences, they're there when I need them and love me and my family as if we've always been together. I look forward to our families growing and sharing more memories down the road.

8. My Mema. My sweet grandma has stepped in and played a role in my life that no one could ever replace. As I grow older, my love grows, and I continue to be more like her everyday.

9. Music. I need it. I crave it. It helps me get through so many days...

10. My heart and my inability to say no... although it makes for a chaotic schedule and some grumpy days, I absolutely love being "busy," especially for others. I can't help it and it's too late to change now. :)

11. Riley Hospital for Children. They are amazing. I'm so thankful for their selflessness and knowledge. The love they show for their patients and patients' families is astounding. Graden has been so blessed with amazing doctors, nurses, and medical staff members everywhere we go, but we have a special place in our hearts for Riley's.

12. Insurance. Whether I agree with what's covered and not, how much my deductibles are, and having to wait on hold to talk to someone, I'm very thankful that we have insurance to deal with and help us some.

13. The thoughtfulness of others. During 2013, we've been acknowledged with cards, calls, messages, and monetary gifts in ways I still cannot believe. Friends, friends-of-friends, family, family-of-family... so many people reached out to us. No gift or thought was too small; we appreciated every single one of them -- of you!

14. Books. All kinds of books. Print or digital - I don't mind. I just love books.

15. Pictures. I love pictures as much as I love books. Everyone who knows me knows I'm crazy about taking pictures. I love having the ability to capture a "moment." I'm so thankful for the thousands and thousands of pictures I have!

16. My nieces and nephews. I ABSOLUTELY love being Aunt 'Lissa (or as my ornery Camden says: Aunt 'Sissa). They make me feel special in a unique way. Being an Aunt is different than being a Mom, and I love it just as much. In 2014, I will gain TWO new babies, and I. CANNOT. WAIT.

17. Our jobs. Phil and I can both say with ease that we are doing things (and working for people) we love. We enjoy getting up every morning and working and are appreciative we have jobs to go to each day.

18. My Mentors. There are a few people in my life daily that may not even realize their impact on me. Some day, I will tell each of them.

19. My bed, couch, and DVR. Materialistic? Probably. It doesn't take much to make me happy, but I love our "movie" nights and being able to be lazy with my three boys.

20. My laptop. As much as I like my iPad, I love my laptop. It's my lifeline. I could probably live without my cell phone, but I do everything on my computer; not to mention, it's where I write. :)

21. Public schools and Teachers. I will argue with anyone -- they are the best; I don't care what you read in the newspaper. (Actually, that's any teacher anywhere -- I'm thankful for every single one of them!)

22. Target. A trip to Target makes anything better.

23. My best friends. I mean the ones, both old and new, that have stuck by my side through all my ups and downs. You know who you are. :) I can't believe we've had more years together than not! My favorite childhood memories include you!

24. Memories. Good and bad. I'm thankful for all of them; they make me who I am today.

25. Laughter.

26. Bracelets and boots.

27. Vacations. (Need I say more?)

28. Chips and Salsa. It's like Target: it makes anything better.

29. Crayons, Markers, and Sharpies.

30. Last, but not least: LOVE. The love of my hubby, my boys, my family, my friends, others, and the love I see between people. It makes me happy and thankful for the love I encounter every single day of the year.

Of course, I could have kept going, but this will do for my "thirty days of thankfulness."

I leave you with this: no matter the day, month, or year, take a minute to think of all the things you're thankful for. While some may seem silly or small, they're not. I try not to take anything for granted, and what better day to celebrate what you're grateful for than Thanksgiving.

From my home to yours: Happy Thanksgiving!

Back to Reality...

Last week was... well, it was every positive adjective you can think of: wonderful, amazing, relaxing, exceptional, fun, perfect. Most importantly, though, it was exactly what we needed - a week with no worries, no appointments, and no schedules to follow. 

We knew it would eventually come to an end, and we were okay with that. We only needed that week - that break from everything. Thankfully, we remained safe when we flew home Sunday and only had a minor flight delay. The flight before ours to Illinois wasn't so lucky... We send our love to those families hit by the storms and will be thankful we landed safely (although quite bumpy!).

Yesterday was rough for all of us; we went to bed early! I suppose that's what we get for taking a trip in the middle of work and school. ;) 

And, today, we're back to reality. I wrote in my last post that I have been busy, and I have. But, there's more to why I haven't blogged in awhile.

Grado has been having some new struggles. So, today, he is having a reevaluation with his Neurologist and Neuropsychologist. I'm not sure I am able to offer all details, because there's just so much, but the jest of it is that he's becoming very defensive and protective of his head. If someone gets too close, he panics... he even pushed a kid down at school because he thought the child was going to "hurt his brain." I'm sure Grado doesn't mean harm to anyone, but I also know he's scared. And, let's face it, brain surgery is a lot for anyone to deal with, so I imagine it's worse for a 6 year old (ah! I can't believe he turned 6!). 

In addition to his worries, teachers at school have some concerns, too. We had Parent-Teacher Conferences before we left for Florida, and we spoke with her before that even, and while he is doing great academically, he is "zoning out" like before, which means he may be having more seizure activity, which we thought was being close to under control. Of course there are several other concerns, too, but I'll spare you the details until I figure out what they all mean. Long story short, he's been struggling at school and I hate it. 

Lucky for me, his teacher and the entire staff, is amazing. Even the students are wonderful with him. No one judges (a constant worry for me) and no one makes me feel like he's "bad." They're encouraging and patient, and everything he (and I) need. 

Also lucky for me, I called before we left for Florida and his doc agreed to get us in right away... So, this morning, we're visiting for more testing and to start the process of determining what Grado needs next. 

I watched this little guy last week, and I wish I could have videotaped him the entire week... he was so happy - happier than he had been in a long time. He is always funny and always laughing, but last week, I felt like he didn't have any worries, no stress. So, yesterday, when I felt bad to returning to work and my own classwork, I decided it was so worth it for that time with my family... he deserved it and needed it more than any of the rest of us.

Sometimes, I find myself apologizing for him, for his ornery (or sometimes rough) behavior, but lately, I've decided that every kid has a "moment," despite health issues, and that I shouldn't have to apologize or feel so badly. I think this is something all moms do, though. We've all been there... ours is the loudest, roughest, meanest, or saddest kid in the group. We get "the looks" from others, but I just figured out that those looks aren't typically (ha!) judgments; they're full of empathy. Every kid  has "their moment," and that is okay!

So, while his journey, his struggles, are far from over, I know he will get through them. Although better, he still has a long road in front of him as he works through new issues. I really just hope these seizures are staying away and that he's just trying to cope with the stress and nerves of his surgery. I want it to be an "easy" fix. I want him to be happy all the time so he can share his laughs and smiles and jokes with everyone... 

Today, as we jump back into reality, I will focus on the images I have in my mind of his smiles last week, and remind him how far he has come. This, too, he will overcome; I have no doubt...

What a difference a year makes...

Last year, we celebrated Graden's 5th birthday with Minion cupcakes and several smiling faces. We knew we wanted to have a big party for him because he was in the midst of trying to determine his "next step." And, while it was a fantastic day for him, we had no idea what the coming weeks would bring. As you know, through December 2012 and January 2013, we visited Riley's Children's Hospital a few times and were told at the end of January that Grado would have brain surgery in June.

Since that visit our lives have changed... I realize that sounds so cliché, but it is true. So very, very true.

I'll spare you the details from the months leading up to surgery; you can read about many of them on this blog. What I will say, though, is that when I look back, I can't believe that only five months have passed since his surgery... June 10, 2013 is a day I, Graden, and his family will never forget...

Now, as we celebrate his 6th birthday, I want to take time to acknowledge how thankful we are for his strength, his ornery personality, his love, his sense of humor, and his will to be his own person, even at his young age. Sure, there are days he drives his Momma crazy, but we can't imagine out lives without him.

I've stayed away from my blog for a few reasons: I am busy, I struggle to put my feelings into words these days, and I'm busy. :) Today, though, I blog from Florida... I blog to share my excitement for Graden's 6th birthday, to share my love for Grado, and to share my appreciation for the support, love, and encouragement we've received as a family through this entire journey. And, despite it not being over, I can honestly say this journey is easier because of the people we are surrounded by daily.

Tomorrow morning, my tough baby turns 6, and we will celebrate at Magic Kingdom in Walt Disney World... Tomorrow we celebrate more than a birthday, we celebrate 2013 and the obstacles our stinker has overcome. :) 

I have to, so I will.

We got the new CPAP machine.

It looks, and sounds, scary. Here is a picture from his last sleep study so you can see what it looks like:

Last night, before bed, we set it up together. The machine itself is the exact same model as the one we used to have, which I think helped Graden's transition. The mask is different, though, and I was worried he may not like it even though he said he did during his last study.

As I was getting him attached, connected, and fitted, he struggled. I could tell he was tense, which isn't usually the case with G.

After I got him all hooked up, he snuggled into his blankets, and I turned it on, waiting for a response. He took slow breaths and looked so fragile. I don't know why I felt like crying... he's been wearing a mask for months.

Finally, I asked him how he was doing. He tried to smile and nodded. I gave him a "good job" and told him to close his eyes. Eventually, I tip-toed out of the room.

About 15 minutes later, I heard him... "Momma!" Before I could even get back to his room, he yelled again, "Mommmmaaa!" I panicked! (Although, have I told you how much I love him calling me "Momma"? It melts my heart that the "-ma" hasn't dropped off yet.

Luckily (if one can say finding their child sitting straight up in bed, with fear in their eyes, crying, reaching out for you is lucky), he was okay. When I asked him what was wrong, he answered that the machine was "breathing too hard for him" and "it was about to give him bad dreams." I almost smiled at his seriousness.

After calming him down, we went through the steps again, talking quietly about why it was so important to wear his mask... I sat in the room until he drifted off, with promises of leaving the door open as I left.

He did great through the night... the mask stayed on and he slept well.

Very proudly, he pounced into my bedroom this morning (bright and early) to tell me he really liked it, and he "even took it off by himself when he woke up."

Thank goodness.

I love him for so many reasons, but my favorite is his strength... his "I have to, so I will" attitude. He even told a friend of ours yesterday that "He got a new machine that will keep him alive." At first, I didn't know whether to smile or cry, but I held it together, smiled, and gave an "Aw." He pays attention to me when I talk, but I can't say for certain that I say his machine "keeps him alive." I know it does, but I think I use other words. So, when he summarizes my paragraphs and our talks and gets straight to the point, I'm awestruck by his candor. Sometimes I let myself be saddened by what he has to go through, despite knowing it could be worse, but it's never long before he reminds me that he can handle it... that he has to, so he will.

Try and try again...

The results came in: Graden is making the switch from a BiPAP to a CPAP.

Apparently, this usually happens the other way around, but Graden needs a continuous pressure without any varying adjustments. (The BiPAP is a bi-level system and offers a different pressure if Graden fails to take a breath within a certain period of time -- it reminds me of blowing in a baby's face and watching them take a breath; the same method applies in the BiPAP.)

They say many people move from the CPAP to the BiPAP because the BiPAP is easier to tolerate... They say, they say, they say! Who really knows? If there's one thing I learned, it's that it is different for everyone, and even then, it can still change.

So, instead of offering the second pressure when he doesn't take enough breaths, we're switching to have a continuous flow of air, which is supposed to help him breath regularly... Try and try again...

We get to pick it up tonight after school, and I must say that I'm anxious. Not that I'm not excited, because I am. Goodness knows I had forgotten what it was like to sleep with a baby monitor and don't miss the days of waking up during the night. But, that doesn't take away the worry that this machine still may not be what he needs... Yes, I know: If it isn't, we keep trying.

I just realized I haven't heard back from our Neurologist at Riley, so I'll be checking in this week. Time flies when you're having fun, and all that... :)

On a good note... Graden is doing great in school (well, with a few minor exceptions - ha!). Landen keeps telling me he's proud of his brother, which just melts my heart. I wonder if Landen realizes that Graden is trying to be exactly like his big brother? :) Both boys can be stinkers, but I'll tell you, I hope they continue to support each other.

Momma went MIA and couldn't take it...

My last post was on July 9th - almost two months ago, and, although I feel badly for leaving some of my readers "hanging," I must admit it felt good to drift away for a bit.

I went M.I.A. -- missing in action. Didn't know a mom could do that, did you? Well, this Momma didn't have much of a choice.

While blogging is still my favorite coping mechanism, I needed that break. After our last trip to Riley Hospital for Children in early July, I made a very conscious decision to enjoy the remaining weeks of summer, knowing fully well that as soon as the calendar flipped to August, my life would once again become chaotic.

So, I did. I enjoyed this past summers more than many of the previous. I played hard. We swam. We ran. We played baseball, built forts, watched movies - at home and in the theater! We stayed up late, laughed, and spent so much more time together than we had been able to during the school year. Even Phil was able to enjoy summer a bit more during July and into August.

It's not that I didn't want to update you about Graden, I did. I just couldn't bring myself to jinx his speedy, smooth, and strong recovery... Plus, we needed that time together. Time to just "live."

August came and went. Again, we gradually got busy as we prepared for school to start. Graden started Kindergarten without a hiccup. I struggled (and still do) leaving him. I know he's in great hands, but that doesn't always take away the feeling that I should be there with him (for him) in case something happens. Everyday, I remind myself that I'm close and that he is tough - in so many ways.

As I mentioned in my last post, we continued to "recover" and learn about Graden's restrictions. We had our follow-up appointments a few weeks ago; that is why I came back to blog...

I need this blog as much as I need the air that I breathe.

I can't explain that and I'm sure it sounds ridiculous, but I can't say I care. I just know that writing, explaining - however disorganized and chaotic my thoughts, and sharing helps me through these challenges. Being able to "get it out" allows me to be a better mom somehow. I'm telling you -- it does.

You  may have heard or read on Facebook that Graden's swallow study went great! The therapist spent all of fifteen minutes checking him and was so pleased to tell us he was "swallowing normally" that I cried when she smiled at me. It was the first time we went for a test and received an "all clear." I will never forget that feeling and hope that I will be able to experience it again someday.

Because of the success of that test, and because his recovery was so much easier than we had anticipated, we went to his sleep study with fewer worries than we had in the past. I honestly allowed myself to believe that this could be it - that he could have improved to the point of living differently. Living with fewer restrictions, fewer complications...

I can tell you that I had never allowed myself to feel so positively about a test. I try to be very borderline:  not too pessimistic but not too optimistic, either. I have faith, but I'm not naive. I'm tough on the outside and weak on the inside. It's a fine line to walk. I can't let Graden see me struggling, so I remain in the middle. We always talk about it with him so he's prepared, but we don't want to scare him... But, this time... This time, I walked in after two weeks of waiting patiently, confidently for the results, thinking that I knew we would be okay.

I didn't expect it to be gone or disappear magically. I didn't expect a miracle. I just wanted an improvement, and I didn't think that was too much to ask for...

Friday, though, Grado and I met with his Neurologist here (in FW), and as soon as she entered the room, sighed, and pushed her chair closer to me, I felt my positivity slap me in the face. For starters, she always comes straight into the room and acknowledges Graden. Friday, she did not. I've never heard her (or any doctor) sigh upon entering an appointment. Friday, she looked defeated and didn't work to hide it. And, she always stands or sits by Graden while she talks to me. Friday, she came close and looked straight into my eyes...

Immediately, I wished that Phil had come with us. He stayed at work, though, because he was feeling positive, too. We thought it would be a routine follow-up...

Instead, she began by telling me there are still concerns, which I assumed by her demeanor. She continued by saying she was concerned. I remember feeling like she took too much time to continue with her next statement, and I didn't know what to say, so I watched Graden play.

Finally, she began again, going through the results of the study.

It seems that Graden's Central Apnea has, in fact, improved; however, he is still having several "episodes" a night -- to the point that she described them as "dangerous."

No parent ever wants to hear that their child is having "dangerous" "episodes" during the night.

Additionally, he is hypoventilating and his carbon dioxide levels are off...

There was more, but it all blended together and will be addressed in the next few days and weeks.

I'm sure I've said this before, but I'll say it again: you can judge your level of worry by how quickly you are scheduled for your follow-ups and tests. Before Graden and I left her office Friday, we were told that we needed to be in tonight (Wednesday) to conduct yet another sleep study. Thus, my level of worry is high. Extremely high.

No parent ever wants their doctor to press the issue with urgency.

So, now, we go back and will - hopefully - find levels and pressures of oxygen that we can alter in his BiPAP machine to assist him during the night.

As if I wasn't already worried about him not waking up in the morning...


I've got a call into his seizure specialist at Riley -- our Neurologist (here) wanted us to touch base with her for input and a possible second opinion on other issues that may be influencing or are being influenced by his brain activity while sleeping.


So, yes, Momma went MIA and look what happened. I can be strong - I can. I will because I have to be. But, I surely won't be letting my blog go much longer without an update... I can't take it. I need it.

I'll be back with an update as soon as we get the next set of results.

Another Chapter: Working to Maintain

As we made the drive to Riley yesterday, I couldn't help but feel as though it was taking longer than normal. My mind was racing -- yes, a bit more than normal, and my heart was heavy. 

I shouldn't have had a heavy heart -- the past four days had been amazing! We had a wonderful 4th of July and Walk for CSF -- our first event as a soon-to-be chapter of an amazing non-profit organization. The boys had a blast and Phil and I felt relaxed.

Still, I couldn't sleep the night before; there were storms and my mind wouldn't turn off... all instigators to the anxiety I woke up with.

I'm sure most of the nervousness I felt came from having to meet yet another doctor. No, I'm positive...

Yesterday marked 4 weeks since Graden's surgery (Wednesday is the official "month"). And, while I will never forget what he went through, there are certainly moments when I let it slip... when I feel like it was years ago - not weeks.

His scar is almost uncovered from the glue/adhesion (remember, he didn't have stitches or staples). It's still difficult for me to look at, but it's just another reminder of all that he has gone through, which is exactly what got me through yesterday.

When we finally arrived at Riley, we checked in, and waited to be called back. 

In those moments in the waiting area, my mind always goes through a series of questions:

"What will she look like?" (As if it makes her a better doctor...)

"How will she sound?" "What if I don't understand her?" "What if she doesn't understand me?"

"What if she doesn't agree with what's been done so far?" "What if she wants another surgery?"

"What if...?" "What if...?" "What if...?"

Thankfully, I didn't have long to consider all these questions, doubts, worries; we were called back within a few minutes. Graden went through the motions of the "check-in" like an old pro: height, weight, blood pressure, and questions... 

The nurse asked minimal questions, which was surprising because this was our first visit in their office, and left us to wait for the doctor, who would "be in shortly."

The doctor came in minutes later, and I immediately began sizing her up... Isn't that horrible? Am I the only person that does this? (Phil admitted he did the same, so I guess I'm not completely alone.) 

I didn't have too much time to compile a reaction; she got right to work asking questions and developing our relationship. It was clear she had done her homework; she knew about most of Graden's history. 

As we started from the beginning and caught her up on details, she made notes and provided explanations instead of just writing and nodding at us. I was really very happy with her willingness to talk with us instead of to us... She was so thorough and gave us an even deeper understanding of Graden's Heterotopia -- the cause of his seizures. 

It felt good to finally be able to focus on the other of Graden's two brain abnormalities... With the attention being on his Chiari Malformation these past several months, I was thankful for her thoughts about the seizures and how the two affected each other. 

So, what did she say?

Well, the jest of it is pretty straightforward at this point... 

First, we will add a vitamin to his current medication in hopes of helping his mood swings, which is the result of his current medication. The medication is working well, so we don't want to change it; we just need to see if we can help him work through his frustration/emotions.

Next, we wait for the results of the two (possibly three) upcoming tests to determine any changes in his Chiari (after surgery). The surgery of the Chiari *hopefully* altered Graden's Central Apnea, which in turn will improve his seizure activity (sleep deprivation is a huge factor in the types of seizures Graden has). 

We will work to notify others - family, friends, teachers - of how to respond to seizures and work to prepare Graden for Kindergarten. In fact, Landen and I may attend a class that offers scenarios and information. (The doctor also sent me home with tons of reading material!)

We will meet with her again in October to decide if we need to add a medication or if his current seizure activity is "under control." 

Lastly, we talked about Graden's restrictions, which we've always known, but we also always ask. :) As we expected and have known, no football, and no other sport that uses their heads (soccer). She did clear him for baseketball, unless they start using their elbows, which we'll have to address as he gets older. She suggested golf and told us he could play baseball, but he must wear a helmet. Basically, with sports, we'll have to play it by ear and "better safe than sorry." 

We must be careful with heights (climbing, specifically) and water - because in the event he has a seizure, it could be most dangerous. Driving may not be an issue if he's seizure free for six months, but, of course, that's way down the road... And, we will always have to be mindful of his head because of the Chiari. So, we'll see how our surgery follow-up goes on Wednesday.

All in all, we think it went great; she seems positive we can work to keep his seizures under control - not just the large ones, but the minor ones as well. The next few months will bring us more obstacles in the testing, but let's hope we can get to a point where we are "maintaining" and not "fighting." 

In honor of Graden's love for basketball, I leave you with this quote... 

"If you're trying to achieve, there will be roadblocks. I've had them; everybody has had them. But obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it."
-- Michael Jordan