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.