Tuesday, September 22, 2009

Occupational Therapy: (Feeding Difficulties)
We are doing messy play with him. This is where we dip his toys in baby food. We allow him to play with his toys with food on it. As he lifts the toys to his mouth, he will taste the food and our hopes is that he will gradually become comfortable with having food in his mouth.


Physical Therapy is a little more extensive.

Physical Therapy: (Cerebral Palsy - Muscle Tone)

Leg stretches are done twice a day. Hunter hates his leg stretches. I know he can feel the muscle burn. But, its so important.

We try many exercises. Another exercise we try is sitting Hunter on our knees; we support his back with our thumbs as he sits straight up. We, then, rock back and forth without allowing him to lean back. This helps strengthen his trunk.

We are also working with blocks and having Hunter put them in a bucket.

We are starting with the intense therapy with Hunter. Some items that

Monday, September 21, 2009

I'm awake staring at the TV. I'm not comprehending anything that's on the TV, yet I turn it to the most boring channel - the weather channel - hoping that I will be able to sleep sometime tonight. Yet, it just isn't happening any time soon. Why? My mind is racing again. It's racing over worry, fear, and the one million unanswered questions I have that no matter how hard I try to google the answer - it just has no results that fit into what I'm looking for. I seek that crystal ball because that would be the one thing that might be able to help me sleep. The closest thing I have is the magic 8 ball that can answer "yes" "no" "maybe so" and so forth. What box did I pack that away in back in 1989. So, I take my next plan of action: I get out of bed and come to my computer. With the hopes that maybe, if I write everything down, journal it - I may be able to sleep tonight. So, with that say...

Before my experience with extreme prematurity, I never thought about the person that sneezed in the grocery store? Or, the person walking in front of me that lets out a cough? I never had to think about this. I've always been healthy. Why would I think twice about this? I drank after my friends. I went to there house when they had colds. I got a cold, so what! In fact, my entire life - I have been a nail bitter. I started to bite my nails before I could walk. I have no recollection of ever starting to bite my nails. It occurred when I was too little to remember. Nail biting has to be the most nastiest habit and the easiest way to spread germs to oneself. Yet, I do it.

Now, after Hunter is born - I can't help but to think about that person that sneezes two aisles away in the grocery store. My thoughts are "Gosh, I hope she doesn't come by me. I don't want to take germs home to Hunter. I need to dodge out of here." Or, the person that let's out a cough within a close promixity of me, "Should I walk quickly in the other direction?" It's so hard to be around a group of people and not want to ask each one of them, whether or not they are sick? How long must I remain this vigilent about Hunter's health. How fragile is he now? The answer is: I don't know. So, where do I ever find that peace of mind when I'm around someone who sneezes, coughs, etc without worrying about hurting my son from being in the same place at the wrong time.

Now, there is a new set of worries, frustration, and all the unanswered questions back from the NICU days are coming forward. Will Hunter have cerebral palsy as a result of his prematurity? At the time he was in the NICU, the answer was: "It's just to early to tell" Now I know, yes, he does have cerebral palsy. What now?

Hunter started at UM MedRehab Milestones clinic today. And, I found out more about his condition. First, its not mild as I was originally told. It's more on the moderate stage. His cerebral palsy is the reason for his developmental delays. Meaning, the reason why he has less strength in his truck, why he is not walking, why crawling is a slow process, and even his eating troubles is a result of the CP.

And, to make matters worse. His eye sight is poor and this is hindering his ability to develop normally.

So, this is what Hunter is faced with. The strength in Hunter's truck is something they can work on, build up, and strengthen. But, for the first time today, I heard that it is highly unlikely that Hunter will be able to run, play, jump and be a "normal" child. As he gets older, his CP is telling a story. Is a part of me hoping this therapist has no idea what she is talking about? Of Course! Hunter is being seen by a CP specialist in the beginning of October. Here, they will make the determination, with the recommendation from the therapist, that Hunter needs braces for his feet and ankles. It will also be decided what medication to start Hunter on for his CP, and if Hunter needs a walker now. They said that Hunter is not a severe CP case. He will still be able to live independantly as an adult, but possibly with a walker.

I don't normally speak of my emotions. I usually leave my emotions out of any of these emails, but you know what - I just can't anymore. I have been through so much and I'm not scared for the world to see how this affects families, mothers, fathers, siblings, etc. I have learned something through my process. When you're speaking to the people in the medical profession about serious conditions that your child has or has had - if you show any amount of emotion - things start to become sugar coated. I have learned to hide my emotions because I want things straight forward. I don't want things sugar coated. The only time it was not sugar coated for me, Hunter was in the NICU. They were always straight forward and I highly respect each of them for that. So, with that said. My stomach was in knots. I was holding back the tears. But, got into my car and instantly started to cry. I sat in the parking lot for a good 45 minutes crying.

I just don't understand, why? I wish that I could take his disability upon myself and have him live a normal childhood free from all his hardship. In some aspects, its just not fair that my life was full of a happy, free, go lucky childhood, in which, I ran track - a distant runner nonetheless, and was a cheerleader through Jr. High and High School years. Now, I have a son that might not ever be able to experience half of what I did. And, that tears me up to the bone.

Then - God sent me a message. Right then, crying in the parking lot for 45 minutes, I look up. There was a girl in a wheelchair. I would say her age was anywhere between 7-11 years old. She was trached, with a ventilator attached to her wheelchair, and her mom wheeling her into the MedRehab milestones building. And, I first said to God..."Yes, I got your message. And, thank you because you have blessed me with such the most wonderful, amazing, strong, happy, loving, baby boy - that could possibly get through this and still be able to run, play, jump and do everything a normal kid can do. But, if he doesn't and he needs braces, inserts for his shoes, or a walker, he is such an amazing gift Lord, and thank you." It was then that I realized it could be so much worse.

And, this is why I can't sleep tonight. I keep thinking about me crying in the parking lot because my son might need braces on his feet, or a walker. I keep seeing the look on that mother's face as she was helping her daughter through the door. How dare I become so selfish to my own feelings and forget that I'm so lucky to have him. How dare I forget in that 45 minutes his entire road. How could I cry? It could be so much worse. And, if the only thing I'm dealing with is a walker and braces - he is and will always be a miracle baby.

Who am I to doubt the strength of God? He has proved to me that he does perform miracles. In reality, Hunter shouldn't be here. But, if its met for Hunter to walk, play, jump, and run - he is going too. I will continue to exercise with Hunter, stretch, and follow the advice of therapist and doctors. Most importantly, I need to find my own strength once again. There are times, like today, that really bring me down to my knees. Yet, God always sends me these messages. I, truly believe that God sends us all messages like this one. But, it takes us having our eyes wide open to see the messages he sends us. So, please friends - keep your eyes wide open. When you're having a bad day, look for those messages and be thankful for your ability to get out of bed each morning, take a deep breath, and go about your day with no special devices helping you. Wow! How lucky we are! Hunter is so lucky. He could've been that little girl in the wheelchair, trachead, and on a home ventilator. He isn't and he is getting stronger every day.