Showing posts with label Mister. Show all posts
Showing posts with label Mister. Show all posts

Tuesday, January 29, 2008

My Hero and My Heart




I'm a lucky Mama. I know a lot of people who may find my blog by accident or by searches may read my family's story and think it tragic. But I don't, not really. I've really been doing some serious soul searching these past few months. The kind of search a person does when their lives take them in a completely unexpected direction. And I have am much more at peace with how things have unfolded.

My daughter was born at 27 weeks. My water broke at 22 weeks. I was told she would not live. But we proved those doctors wrong! As a team we are unstoppable! Every morning when she wakes up, every minute when she is running from a diaper change, every goodnight kiss reminds me of the incredible battle we won to have her here with us. I am so grateful for her life, her smile, her love. She is my Heart.



And my son. My son. He is nothing less than a Badass. Born at 28 weeks measuring a huge 3 pounds 7 ounces and 17.5 inches long, he is still a BIG Boy. William suffered extensive brain injury and his optic nerves are malformed. Many who have not expected much from him have been impressed by his drive and craftiness. My Mister has learned to overcome some of his spasticity and is gaining function due to sheer determination. Once he could not bring his hands to his mouth. Now, he can! Once he could not hold a toy at all. Now, he can! Once he was expected to have no mobility at all, ever.... Here is the big one... are you ready.... ???... He is starting to combat crawl. I wish there were words to adequetly describe how hard Mister works to do these thing. How he tries over and over and over... he gets so frustrates and "yells" about the things he can't quite do. But he is learning. What a wonderful thing to be able to witness first hand- the sheer power of determination. Driving forward, achieving the unachievable. My little guy. My Hero.

Tuesday, October 09, 2007

Update on Baclofen


We started giving William Baclofen last Thursday. This is a drug to help reduce his spasticity. We are ramping up the dosage from 2.5mg a day to 7.5mg a day over the span of three weeks. My goal in starting this treatment is to help him have more use of his hands.

It has only been a few days on a very low dose but I am being asked if I see a difference at all yet. My husband says he sees no difference. But I think I do.

He, by no means, is grabbing or playing with toys. But I think he is able to get his arms out of his super stiff extension more. He is bending ever so slightly at the elbow now in order to grab my hair when I eat his belly. (nothing like hypertonic grip on the hair!)

Another change that I didn't expect is that his mood has improved dramatically, especially 30 minutes or so after his dose. Why? I'm not sure. I'm thinking that part of his crying and crankiness was due to discomfort in his muscles. Perhaps the spasms and hypertonia are quite uncomfortable. I don't know anyone with moderate/severe hypertonia to ask about this.

Also, he is vocalizing a lot more. Is it because of his improved mood or because of decreased spasticity in his mouth??? I guess I'll never know.

So far, I am not seeing any extra floppiness in his trunk or neck. I'm hoping I don't since he has a hard time with head control as it is.

So that is what is up with the Baclofen. I am hoping that with our next dosage increase, he will gain more function of his arms... keep your fingers crossed for him!