Friday, October 2, 2009

One of Hunter's physical therapist was working with him yesterday. Hunter's Cerebral Palsy is in his ankles and legs - mainly the hamstrings. She noticed that Hunter has not lost any range of movement in his ankles. This is a great thing. The hamstrings are something that would not prevent Hunter from walking independently. They have been concerned over the CP in his ankles, because that would. But, now that they know Hunter has not lost any range of movement in his ankles, there is a chance that he will walk independently (without the aid of walker, crutches, cane, etc). CP is not a progressive disorder. I have said this over and over again. But, after going through the trauma of severe prematurity and watching the obstacles they face, you learn to grab on to every positive and roll with it. It's really one thing to hear about it in an email, but to see it with your own eyes, can change the way you view everything! I've learned to turn this situation into a positive one. I grab a hold of everything positive and roll with it. I figure between a positive attitude, a determined mother, and a child's will to fight - I will do everything we can to see that Hunter can walk independently. Be thankful for every step you and your child takes, it is a true gift! On a separate issue, for those of you that have followed closely, I've been having a problem with a girl at Hunter's medical supply company for a year and a half. This girl is very insensitive to special needs, fails to sends Hunter's medical supplies on time or at all, and does everything to make my situation harder. I have let it go, or talked to her supervisor from time to time. It wasn't until recently that this took a turn for the worse. As you are all aware, Hunter has a feeding tube that was surgically placed into his stomach. Every three months, I need to change this feeding tube and put a new one in. This feeding tube is held in his stomach with a balloon like object full of water. If that balloon breaks, the feeding tube falls out, and the hole starts to close. It can close within an hour. If the hole closes, Hunter has to go through surgery..again! So, anyways - I told this girl at his medical supply company that I have a 30-45 minute (depending on traffic) drive to the hospital. By the time I was triaged, Hunter's feeding tube hole would close up. I would always need one at home for back up. She argued with me, as she normally did, and was convinced she was always right. At one point, she told me: "If it falls out, take him to the hospital, because I'm not sending you another tube until your three months is over with." She held the key to Hunter's world and wasn't afraid to let me know. She was completely uneducated and ignorant about medical supplies and the importance of them. So, last Saturday, on my b-day, and before my surprise party - guess where I ended up? I was at U of M Mott's hospital. I found out very quickly how fast that hole could close up. By the time his feeding tube fell out at home, and I got him to the hospital, the hospital could not get a new one in. They were talking about admitting him for another emergency surgery. A Physician Assistant from Peds surgery came down to the ER. She got a small catheter in the feeding hole, and Hunter was able to go home. Let's not mention that it was extremely painful for Hunter as she tried to squeeze a catheter in a closed hole in his stomach. My Dad came up to the hospital to be with me. My Dad NEVER cries. I think I only saw tears in my Dad's eyes a couple times my entire life. This was one of those times. Needless to say, I was not happy. If you ever experience pain in your child, knowing it was the fault of someone else, you will know the thoughts that went through my head that day. I knew that something had to be done with this girl. This WOULD NOT happen again. So, Monday morning, I called up to the medical supply company. I wasn't going through her supervisor anymore (been there, done that). I wanted the owner. I got the owner. Let's just say that I am happy with the outcome. I'm hopeful that I will not have any future problems. I explained to the owner that it was this simple: Hunter needs, prescription sent from doctor, I order, insurance pays, they ship -end of story! I told her that I don't want any drama in between those steps. She was upset that she worked so hard and this girl was misrepresenting everything she worked hard for. There have been other complaints against this girl. I was not the only one. For those that knew me really well, I was always a very passive and laid back person. I still am...until it comes to my son! I guess I've been too passive on this girl...up until now. Again, I'm faced with some feelings of guilt and I'm trying to convince myself that bringing this to the owners attention was the right thing to do. Yet, I'm still feeling guilty about it. I'm much too sensitive. I know. Hunter is still working hard through therapy. Every week, he is making developmental strides in the right direction. He has come a long way. Sometimes, it’s so hard to see because I'm with him every day. But, his therapists do a great job and pointing out the new things he's doing every week. He is responding very well to the therapy and the independent work I do with Hunter at home.