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!!
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!!
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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!" Yo Ho Ho and a Bottle of Tums! Really! You would think someone this dashing and brave would be able to keep food down at night! I can' t even blame it on too much rum because I don't know what rum is! Mom is becoming concerned because I keep losing my cookies, but only at night. Is this related to reflux? Is it a dietary issue? The flu that is lasting a long time? Remember, I am just a lean little man, so losing meals doesn't help me feel like the big, bad buccaneer that I know I am! We are visiting the doctor today to hopefully find some answers. It seems like lots of Chromosome Challenged Kids have reflux issues. Any advice you'd like to share? On the POSITIVE side. Guess who learned how to POINT. It took me three years and all kinds of hard work and therapy but CHECK IT OUT! This is really big news, people. From not being able to unclench my fists normally to being able to show my Mom something special. I'm super proud of my self this month for sure! Speaking of therapy, be sure to check out my mom's newest brilliant idea for balance and open-handedness work (or so she says!) just click on the Therapy tab and scroll to the bottom! Hi Everyone! This is an exciting day and it wraps up a really big week for me. Not only am I THREE YEARS OLD today, but I graduated from the Early Start Program and will begin my new pre-school class next week with the other 3-5 year old kids. I'm sure going to miss my beloved Miss Janet, Sandy, Mari, and the rest of the helpers in my old class. I made such a lot of friends and learned so much! I will never, ever, ever forget circle time and Wheels on the Bus. I love you guys! Now, then. I have never been three before. I wonder what cool stuff I can dream up to accomplish THIS year? Oh, the endless possibilities! Look out Mom, you had better take a nap and fasten your seatbelt...here we gooooo! Yep, I am constantly amazing my posse now with what I am learning on a daily basis. New words (just call me Captain Echo because I will try and repeat everything you say), new skills, and above all else, new ways to view the world. What you "normal" folks need to understand is that us "special kids", "differently-abled kids" or whatever you want to call us, have abilities and thoughts that are often TOTALLY DIFFERENT than yours. We may see a situation in a whole new way than you do which makes sense to us and works with our abilities. Here are some examples: FINGER ISOLATION TECHNIQUES For months now I have been learning to separate my fingers and use them individually and to grasp things normally. See! Look what I can do now! Here is Mom's comment: "Want to be excited he is isolating and using his pointer finger but that's nnnootttt exactly what I had in mind. Yucky yucky" Ha! Picky, picky is what I say! DON'T CRY OVER SPILT MILK See? No problem! I saw a situation. I assessed it. I made a thoughtful determination of a solution and then applied it. My brain is connecting the dots and maybe it's not the same answer you would have had, but it was my answer! RUNNING IN THE HOUSE IS A BAD IDEA Duh. Sigh. I know, I know. Mom said, "I told you so!" After she freaked out on the way to the ER. Did you know that they actually GLUE kids back together now? Depth perception may continue to be an issue for me. Was this a result of me being stubborn and not wearing glasses? Or am I just becoming a little boy and this stuff happens to the best of us? There was a time seeing me run made everyone happy..sheesh, make up your minds! Another valuable lesson from this experience: nobody will mess with you if you show up like this for the first day of pre-school. YOU DON'T HAVE TO BE THE DRIVER TO GET THE GIRL ! Actually, this is one of my best buddies, Paizlee. I have the coolest friends! My point is, I may not do things exactly like my brother does, but I DO love my friends and I have a special way of connecting with people which makes me really, really happy and I hope to make them happy, too. What I cannot always say with words, I say with my eyes, my face, my body and my heart. Sometimes I see someone that I love and I just SHAKE with joy! Can you feel me, man? PANTS ON THE GROUND Hey, just curious. do any of you guys ever have weight fluctuation? For some reason my pants got bigger! Mom went on You-Tube to learn how to sew and take them in because the clothespin thing didn't cut it. I'm almost 3 years old and still wearing a size 2 or below. Just a little squirt I guess. I was wondering about other kids with deletions. Have you had ups and downs with your weight? I eat a lot, perhaps this is just how I get taller and thinner and then I will fill out. The doctors don't seem too concerned and Mom makes sure I eat REALLY good food. She's a great cook, that woman! Ok. I'm man enough to admit it. I love my mommy. I mean I REALLY love my mommy. Sometimes I just want her to play with me all day long, she is so much fun! Why on earth would she want to clean house or hang out with my brother or grocery shop or cook or anything. Especially when I NEED her! In this picture I think she was trying to dust the furniture - but hey, I saw an opportunity and I took it. I think she makes me feel warm and safe when there are so many changes happening to me so quickly and so many appointments and teachers and doctors all the time. Maybe I will be braver soon and won't need to follow her around 24-7 and drive her crazy. But I won't stop loving my mommy. Never ever. Hi Friends! It's been awhile since my secretary posted an update and boy, has a lot happened! Before I get to the exciting stuff, I thought I would address a personal issue....drool. There, I said it. I used to think it was just me...but it turns out that drool is actually pretty common! Mom has to change my shirts a lot and we have tried bibs and things. I can't help it...it's not like I TRY to dribble..it just happens! Anyone else out there have the same soggy problem and wonder what to do about it? Here are a couple GREAT articles which explain WHY and offer some down to earth suggestions for therapies and creative ways to make life a little dryer and to reinforce that DROOL can be COOL. http://mommiesofmiracles.com/how-to-reduce-drooling/ http://www.friendshipcircle.org/blog/2013/07/11/14-drooling-tips-for-your-child-with-special-needs/ |
AuthorMy name is Wyatt Hawkins and my Mom and Gramma are helping me share my adventures. Typing isn't my thing....YET! Archives
November 2017
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