- I would like to decipher the mysteries of the potty chair and what it means for me. Thus far my curiosity and enthusiasm has not resulted in much success but I am definitely getting the picture.
- Talk, talk, talk! You should hear me now! I am repeating EVERYTHING and really communicating my needs.
- I vow to do my best in therapy, particularly with stretching and working my muscles. I know sometimes it takes hard work to see progress but it does work!
- I will work with Mom & Dad and doctors to figure out my tummy issues, reflux and weight. Some days are just better than others right now, but I see that they are worried and I want that concerned look to go away!
- I will try hard not to yell at Mom and be sassy or throw things at my brother when I am ticked off or otherwise act like a three year old. Oh, wait. I AM a three year old. Never mind.
- We all resolve to continue to help others in any way possible to understand, accept and work with chromosome disorders. We have met so many kind, supportive peeps! Gotta always pay it forward!
My bandmates and I want to wish you all a Happy, Healthy, Safe and Prosperous New Year! I'm pretty sure I am going to try and stay up until midnight, no matter WHAT Mom and Dad say! How about you? Do you have any resolutions for 2014? Here are some of mine:
Well, are you all ready for the fat man with the white beard and red suit? This Christmas thing is so amazing! Lots of lights, music, friends and family. Love it, love it, love it!! One of my new phrases is, "I'm so excited!" Here is a picture of me enjoying some Christmas fun on a merry-go-round. When it stopped, I used the sign for "More". Mom thinks I'm pretty darn smart.
So I was pretty sure that I had been a good boy this year and what am I getting as a gift? More therapy assignments! Sheesh! We are apparently going to start adding a stretching regimen to our daily routine. At my 6 month review at therapy the doctor was still concerned about my hamstrings, ankles, and left arm. It appears that contractures are still a risk although we have come leaps and bounds from how my hypertonia used to be. We are also going to have a hip x-ray done! I wonder what they will find out! I will certainly let you all know how much I enjoy being poked and twisted like a pretzel on a daily basis. I am really glad that it's helping me walk and play with the other kids, though, so bring on the tough stuff, I'm ready!!
Hello Everyone! 16 days until Christmas! Have you decked your halls yet? I'm a firm believer that Christmas is about giving, so here is a reminder about a very giving place. The Chromosome Disorder Outreach website is a great place to visit if you have questions about a genetic disorder. Since all of us kids are so unique, a diagnosis often has no guidelines or parameters. It is comforting to find as much information as possible and CDO does a great job collecting data and stories and connecting families to the resources that may help. Here is an example of an article we found:
"The 3p deletion syndrome, like most chromosomal deletion syndromes, is highly variable in its clinical presentation. However, based on past experience (which may or may not withstand the test of time, as more children are identified with this diagnosis), there are a few generalizations that can be made.
First, most children with 3p deletion have developmental delay, and most have relatively small body size as they grow. In addition, there are some distinctive facial features shared by many children with 3p deletion, including ptosis (drooping eyelids), a broad bridge of the nose, distinctive looking ears, and low muscle tone. Some have widely spaced eyes, and eyebrows that connect in the middle, and some have an extra digit.
However, it is very important for parents to realize that their child is unique, and may have a unique outlook. Rarely, the child's outlook is not as positive as other children, but it is far more likely, on average, that a child identified today with a chromosomal deletion syndrome, will have a more optimistic outlook. That is because genetic specialist physicians are ordering new chromosome deletion tests (such as the chromosomal microarray) on a much broader population of children.
Despite the understandable interest in new diagnostic technologies in genetics, it is very important for parents to keep in mind that they only provide a molecular explanation for what is already known about a child.
Infrequently, additional worries are introduced by a chromosomal diagnosis, but doctors are typically quick to explain this to parents. The most likely situation, however, is that the child's recent developmental progress and state of health is by far the best predictor of how the child will continue to do in the near future. Predicting the long-term future is impossible for any child, with or without a chromosomal diagnosis. All parents can thus reasonably hope for the best, given the details of the child's current health and developmental status, while being prepared for any challenges that may occur in the long-term, and taking on the joys (and the occasional angst) of parenting one day at a time." Thomas Morgan, MD Dept. of Genetics and Yale Child Study Center Yale University
You will never guess what I woke up to...there is a TREE in our living room! AND it smells good. AND it has sparkly lights! AND little things dangling all over it for me to play with! I just can't get over it!!
Life is just so magical and amazing. I hope wherever you are and whatever you do for the holidays, you have as much fun enjoying these special moments as I am! Love you all!
One of the challenges that we have addressed here is the DROOL factor. We have talked about ways to utilize bibs, work our oral muscles and what other therapies may be helpful. But what about the obvious part..the BYPRODUCT? Yes, drool is wet and yucky and sometimes us kids may go through several changes a day. I'm fairly certain I hold the world record for destroying a new outfit. Laundry for parents of special needs kids is a reality that can be overwhelming. Especially for my mom. She HATES doing laundry!! Thanks to all our buddies on Facebook, we have compiled a list of stain removers used often on drooly clothing. Anyone else have ideas? Send us a message and we will add to the list:
Hi friends! I hope you had a wonderful Thanksgiving! Here I am with my brother and cousin. My favorite part about holidays is seeing all my family. Did you know that turkey is Gluten Free? Yep, I'm back on the program since it seems to help with the old digestion. Mom does a great job finding me special things to dine on. Thanks Mom! Speaking of my favorite lady in the world. She had a lot to say on the Chromosome 3 and Me Facebook page about being grateful and I feel the same way:
"I could write for days about things I am thankful for but I would like to list just a few. First and foremost I am so thankful for the amazing progress Wyatt has made this past year. We still have a long way to go but he has come leaps and bounds just from last thanksgiving. Secondly, I am so thankful for all of our doctors and therapists we would not be where we are today if it weren't for them. Thirdly, I am so thankful for our family and friends for all of their support when times get hard and last but definitely. not least I am so thankful for all of Wyatt's supporters and friends we have met here. We hope everyone has a safe an amazing Thanksgiving!"
My name is Wyatt Hawkins and my Mom and Gramma are helping me share my adventures. Typing isn't my thing....YET!