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