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.

Keep moving forward; 12 days and counting...

Yesterday, we went to see Graden's Pulmonologist to get "surgery clearance" and received good news: Graden is moving air (breathing!) better than he ever has.

This is especially good news because of his upcoming surgery. He needs to be as healthy as possible going in... he will need all of his strength for recovery.

Doc continued to chat with Graden, who adores him. My dad got to go with us, which made me smile. I could see the pride in my dad's eyes as he watched G interact with Doc (with little help from me). I tried telling Dad how strong Grado was, but it's so much better when you can see it for yourself. Everywhere I take him, he makes friends (Dad and Graden - ha!).

During their chat, Doc told Graden how happy he was with his progress. Our Bi-Pap machine has really helped G sleep better at night - not to mention how it lets Mom sleep a bit better, too. 

Doc said, at this point, we won't need to revisit our Pulmonologist until October (long after our recovery, we hope), and then he said, "...and yearly thereafter." Talk about music to my ears...

Of course, he did tell me our Neurosurgeon would be the doctor ordering follow-up tests (MRIs, Swallow Studies, etc.) after surgery, and he reminded us that this surgery wasn't a "cure all," which we never forget. Still, he seemed positive that Graden was reaching the point of "living successfully" with his Chiari, which we know changes over time, but it sure sounds great right now. So, the BiPap helps, along with inhalers and medications as needed... Chiari can still cause concerns, but it seems his lungs are strengthening each day. Amazing!

--

Today, I took a trip down memory lane... 

As I did one last "walk through" at the old house, cleaned the floors, and backed out of the driveway for the last time, I realized how much has happened in that house. It was our first home as a family. We moved in Memorial Day weekend (ironic timing!) in 2006. A lot of memories in seven years... Sure, it drove me crazy with clutter some days as we worked to squeeze in, but most days, it was perfect, and it was ours. 

I suppose it's appropriate to move out right now, as we take the next turn on Graden's journey. But, I can't fight this feeling (oh, wow... I just typed that to the tune of REO Speedwagon... yikes!) like I'm missing something, leaving something important behind, or doing something wrong. 

I have to keep my head up, though, and remember why we made the move. It was not because of anyone or thing; it was for all of us, especially Graden. We need to be able to pay past doctor bills and save for future care. We don't know what we will need, but we have to be able to afford whatever it is... Deep down, I know we made the right choice. In fact, I can already see how much we have benefited from the move financially. 

Have you seen "Meet the Robinsons?" It's a Disney movie, and one of my favorites of theirs, too. It's about a little orphan; his name is Lewis (he reminds me of Graden, despite the glasses), and he tries to be an inventor and build a time machine. He really, really wants to meet his mom and figure out why she left him on a doorstep. While that sounds heartbreaking, he actually goes on a journey and learns through a time machine mishap that life is not about the past. In fact, his "future self" teaches him his famous motto, "Keep moving forward." 

Why am I telling you this? Because it's a cute movie and you should watch it, but also because I like this little guy. Often, I think of my own past, Graden's past... I wonder "should I have done this?" or "if I would have done this, would G be better or different?" But, then, I remember that those memories, the past, doesn't change anything now. It's too late. It's done. So, instead, I have to "keep moving forward." 

I know I can't worry about moving out of our first home; those memories are done -- that chapter is closed. We're moving forward.

I sound like a broken record, but we truly are going one day at a time, and we will certainly "keep moving forward."

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.