Saturday, June 21, 2014

Mr. E

Ezra does not have a diagnosis yet. 
The last time I posted about him I think we were here: head x-ray, CT scan, cardiologist, urologist, ENT. 
We have now added: geneticist, neurologist, cranial technicians, physical therapist, hip x-rays, chest x-rays, extra doctor check ups. 
Our "to do" list: get him in a helmet ("like, yesterday" the neurologist said over a month ago- don't worry, it is being made), see another physical therapist through "early intervention", breathing treatments, see a pulmonologist, go back to the geneticist and the neurologist and of course the cranial technicians weekly. I might be forgetting some stuff. I don't really have an organized brain by nature. 

So far the steroids aren't improving his labored breathing... but he doesn't seem to mind either way.  
Ezra usually sleeps well, and he is a very sweet and aware baby. Most of the doctors and specialists have noticed that he is very social. He enjoys attention and people most of the time. 

He is a good baby, and that's a good thing, because I'm worn out. If he cries for no reason, I sometimes get disproportionately frustrated or upset. 

Sometimes I'm really stressed. I have to give Ezra physical therapy several times a day, most of which he doesn't like. Deep pressure on hands, feet, and back along with lots of neck stretching, assisted tummy time, side lying time, and "sitting" time. He has extremely low muscle tone all over his body. He is getting better with the therapy, but the effort weighs on me. And of course, this is on top of the responsibilities inherent in having a baby. Feeding, changing, cleaning blow-outs or spit up, bathing, grooming, loving, scheduling, laundering. 

Then there is worrying. I was never much of a worrier AT ALL, but now I have to think about unpleasant things all the time. They are my responsibility. Nobody else is going to make appointments, take Ezra to those appointments, make sure nothing is overlooked, and do the unpleasant things that need to be done every day. I don't want to think about these things, but if I don't, Ezra will not get the care he needs. And I still occasionally miss an appointment or I don't do enough therapy during the day. I have other kids after all, and a mind that doesn't do well with organizing and scheduling. 

And believe me, I don't worry about needless things. When Asher became old enough to stop hurling himself off the top of stairs and into pools and off of jungle gyms, I stopped following him around. I am the laziest parent of all time. I will take the easiest non-worrying route any chance I get. But if nobody else is worrying about important things, I guess it is my job.  

Not to make this post a rant or anything, but I just need to say how I feel about this next thing. Some people are like "Oh, he's fine. He's normal. Don't worry about it. He'll be fine." When people have this attitude it brings out the rage in me. I want to punch them in the throat. He is not normal. If he were, we wouldn't be spending all of our time and money on all these specialists. I have known from the moment I saw him that something was not quite right. And no, my pediatrician is not over-doing it. She knows a lot and sees a lot of babies. She is trying to rule things out and help make his conditions better. And yes, most likely Ezra will be fine after all of this. But he is not fine right now. Do you know what is going to make him "fine" in the end? A lot of hard work and dedication from me and a team of doctors. I need to be active in this. I cannot kick back and stop worrying.
This was back when his head was not as bad. 

I must confess that sometimes I look at him from certain angles and I cringe because his head is so misshapen, but he is still beautiful to me. Sometimes I don't want to get out of bed because of the daily grind, but I do it because I love Ezra with my whole heart. He is so precious.

Bonus: Here's a picture of a child about to get a chest x-ray. Can you believe that they put kids in this mechanism? It reminds me of a cross between a torture device and Augustus Gloop going up the pipe in Willy Wonka and the Chocolate Factory. 
PS This baby is a lot less purple and screaming than Ezra was. Also, Ezra is younger than this baby and has less ability to hold himself up. I held his hands at the top. I was shaking like a leaf an hour after this appointment.