Learning to Be Brave ..... Again

After getting Tyler's casts off we went straight to get his braces. Brett asked us to bring in his loaner walker so that we could see if there was any sores on Tyler's feet. As he cautiously stood up                   (complaining as he went) there was a huge rush of relief that he was standing. But a huge disappointment but mostly sadness, came rushing through. I never expected that many emotions over such a small act.

It was such a small act. But it was an act of bravery. Bravery on the face of a non compliant, yet braver than anyone I know, face. And on the face of a 9 year old boy.

With each small thing, he truly does put on a brave face. But you know who else does. Every single person in this house.

 Grayson gets left out of SO many things and even when he acts out and is hard. He is still brave. Because having a brave brother and having a brother who has special needs and takes up a lot of time. It makes him have a brave face.

Dallas and I put on a brave face, because we see this boy going from walking to not walking. The feelings of him not being able to jump and run, the regression, the sadness and the roller coaster that we don't get a choice of riding or not riding.

So for now, we will start over and learn to be brave all over again.

Starting at ground zero.

Again.

The Roller Coaster Ride!

Often when you hear people starting out on a new journey they describe it as a roller coaster of emotions. I have found that to be particularly true with a medical journey. I know for us the NICU was suhc a ride. There were days when it was good and then dip almost instantly and usually without warning.

After getting through some pretty steep dips and gone on to that straight and cruising stage where it is calm and you can see the ups and downs and turns ahead I find myself having to gear up for the up just to know that with the up comes that violent SHOVE into down.

I had to look up to the hill and gear up for "the worst" so I could be prepared for anything at the " doctor who can't be named." I have come to find that he wasn't scary. Our NEUROLOGIST( yep I can say it.. see...) was wonderful and the appointment went great. It was such a breathe of fresh air to feel like someone had some kind of clue what was going on with Tyler and that it wasn't this devastating news that I had to gear myself up for. In fact quite the opposite.

In preparing for this appointment I had to face the fact that Tyler just might have CP. That he " might" have to be labeled something that I had been trying to avoid. I had heard the words once from a doc and was flabergasted given that he didn't even touch Tyler to see that he bends and moves fine. Since that was a drop I didn't see I knew I would have to really gear up for this visit.

After our Neurosurgeon told me he thought Ty had CP we saw a orthopedic doc who then concluded our Neurosurgeon was wrong but the braces would be a good idea and then go from there. Our ped suggested yet again to go to a neurologist who specialized in stuff like CP and brain issues and since we still couldn't get him to sleep I reluctantly agreed. Here is where the gearing up goes. I talked to moms who had gone to this Doc and a neurologist in general. All had the same story so I had to start preparing myself for the worst. And the worst I did....

So as the day approached I got more and more anxious and more and more nervous. I didn't want to go alone. I didn't want to hear "those words" alone. I didn't want to have to tell Dallas and then have him tell me that it isn't what is wrong. I didn't want to hear seizures, I didn't want to hear CP I didn't want to be in THAT office. So I had asked Dallas to go with me. I had to have someone else there.

The appointment was at Pheonix Children's (PCH) and I had never been there which compounded my anxiety. It was early in the morning ( another concern with my work not getting out till 2 am) The appointment was at 8 am. That left me with very little sleep along with the emotions that I was allready feelings.

So here is how the day went: Dallas went with me, and we got there early. The traffic was really good and the carpool lane had no problems at all. We were the first appointment of the day and got right in. Met the doc ( whom I thought was absolutely fabulous) and I didn't hear any scary words. In fact, quite the opposite. Ty is doing very well. While we were doing his history that consisted of preemie, brain bleeds, blah blah... the Wow's got bigger and he was even more impressed. As Ty got more and more comfortable he started standing and taking steps and playing. He even tried to open the door. That is when the words CP and I don't think so came out. I almost started to cry. I wanted him to call my Horrible neurosurgeon and tell him what I thought. I knew deep inside that he was ok. That he was going to be ok but I had heard so many conflicting things.

The conclusion: He feels that Ty is having reflux. Severe reflux or more severe than we had originally thought OR had even thought to have tested. We will be going to see a GI doc and have that tested. If reflux is not the cause we will do an EEG to rule out seizure like activity. NOT SEIZURES just activity in his brain that doesn't tell him he is asleep. He said it shows up as activity but is not harmful like seizures are. That is why it is LIKE seizures. We would treat it exactly as we are treating him now.

What a flood of emotions. I was so glad Dallas was there. I was so glad that the idea that he was not "ok" was wrong. I am glad I had looked ahead for the downward thrust. I was glad it wasn't as steep as it was first anticipated.

What a ride and I got back on my even plane where I can look up ahead and see the up and the downs. I am glad that I can miscalculate. This part of the rollercoaster left me tired, emotionally spent and ready for a really nice day off. A day that I can spend it with my baby and with Dallas. They sure make the ride a little more bareable.