The Small Things

I found this picture yesterday. It was taken last February. It felt like yesterday when I took it. Hunter had just gotten out of the bath. We were redoing his NG feeding tube (the one that went on his face). In this picture, you can see the nasal cannula up above his head. He could only handle being without oxygen for less than a minute. But, we wanted to snap a picture of him without anything on his face - no feeding tube or oxygen cannula.



Immediately after this picture was taken, the cannula went back on, and we also had to insert the feeding tube. I remember how hopeless I was feeling on this particular night. I felt that the oxygen would always be a part of him. I felt like I would never see it off his face. At that particular moment, I loved to see my son's handsome face - clear of all that he has been burdened by in his life. I'm with Hunter every day, all day. It sometimes seems like things are moving at a snail’s pace, if not changing at all. Then, I have these pictures to remind me how far he has come.

Hunter's oxygen days are almost over. They probably would be over altogether, but I’m being overly cautious. Maybe, Paranoid! If Hunter is sleeping without oxygen, his oxygen saturation stays in a normal range, but his heart rate is higher. If the oxygen is on, he sleeps with a lower heart rate. He’s maintaining his oxygen saturation though with or without oxygen. Now, we need to work on that heart rate. I need answers why it increases when he doesn’t have oxygen before I feel comfortable to remove him from the oxygen altogether. I guess my paranoia stems from his pulmonary hypertension. The higher heart rate is telling me that Hunter’s body is working harder to maintain his oxygen saturation. I don’t want his heart working harder than it has to be. This issue will be discussed with Hunter’s Cardiologist and Pulmonary doctor at his next appointments.

We were told awhile ago that Hunter has Cerebral Palsy. We've had time to digest it. We had two choices: 1. crumble and fall apart (which I did for a brief day or two), or 2. Pull it together for him, be strong, and research all types of therapy and determine what was best for Hunter. Option #2 was the only sensible one. Long ago, I wrote out a list for his doctors, and I’ve been following their advice since.

When Hunter was first diagnosed, it was explained that his condition is mild to possibly moderate. We were told that on a scale of 1 to 10 - he was at a 2 to 3. At the severity Hunter was at, it was manageable. We didn't know much and really needed a crystal ball at that time. We did know that Hunter would be delayed in development; he would also have to think his actions through. For example, we see stairs – we climb up and down them with very little thought. Except for me, I’m a klutz. In the future, Hunter might have to think about that flight of stairs and tackle it a different way than a person without cerebral palsy.

Hunter hit another milestone. Although it wasn't the ideal side stepping/cruising that most children do; Hunter handled it with as much grace as a child without cerebral palsy. This gives me hope. Hunter walked along the couch. It was not side stepping. He had to turn his hips to walk forward, while his arms remained on the couch for support. His therapist reminded me that this was Hunter thinking it through. I was told that side stepping for Hunter will either need more botox in the inner muscles of his legs (adductor muscle) or it might be close to impossible at this stage. It was the cutest thing I ever saw. I ran to get my video camera. By the time, I had the video camera out, Hunter wasn't doing much anymore. Hopefully, in the days to come, I'll be able to catch him with the video.

Hunter took it a step further. He transferred himself from the couch to a toy nearby. His therapist reminded me that these are all pre-cursors to walking independently. I’m very excited.

I’m including a video of Hunter in his private therapy session. Please remember that this was not Hunter at his best. Again, by the time I grabbed my camera – he wasn’t performing like he did when the camera wasn’t out. After all, it’s the little things (or steps) that count. They lead to bigger and better things.

Photo and video editing at www.OneTrueMedia.com