Uh Oh! Look out! Mom has overhauled the kitchen and we are embarking on a gluten free journey. I'm sorry, what was wrong with corn dogs? Anyway, since the gluten free choice has had a great impact on kids with digestive issues and even autism, Mom is going to give it a test drive and see if there are any significant changes for me AND the whole family! If anyone has some favorite gluten free recipes, sites or products, please oh please, feel free to share! Are there any other kids trying this out and seeing results? I have already tested the brownies and they aren't too bad!
Hello friends! Like is never dull with a chromosome deletion! Just ask my mom! I have been really making progress in a lot of areas. I'm now over 2 years and 8 months old. Here are some of my latest achievements:
** Clapping with OPEN hands!! I am actually opening my hands up in general!! Everyone thinks this is a really big deal because my hands were quite fisted and that made it hard to grasp things.
** My speech and my vocabulary are improving and I am continuing to mimic. Mom, Dad and Carter say the funniest things so of course I need to repeat them!
**Stairs! At therapy it's stairs, stairs and more stairs. Sheesh! Everyone thinks I am getting the hang of holding the rail as support to make it up and down although I still need to work on still actually looking up/down. My team continually bangs on each step so I learn to watch where I'm going!
**Glasses! I have a love/hate relationship with my specs. Ok, it's a hate/hate relationship, but I am doing better at leaving them on - except when I get P.O.'d and then I rip them off and throw them. The moral of this story? Don't make the toddler mad!
So while all these amazing changes are happening and I am running around terrorizing the kittens and doing all the things a normal two year old would do, there have still been questions about fevers and now HIVES. Anyone else out there with these dang HIVES? What the heck! The first round of FOOD allergy tests came back fine so now they will test for other allergens. Why all of the sudden? Why is it randomly occurring? Is it related to the odd fevers? Like another glitch in the immune response system? If any other kids with deletions have issues with hives, let us know what you find out! And we will do the same!
Hello! Wow, time does fly when you are having fun! There has been so much going on that I wanted to take a quick break in the action and fill you in!
Pre-school and therapy have been going great! We recently participated in the Gifted Games at San Benito High School. Over 300 special needs kids raced, jumped, threw and just had a blast in general. The high school students organized and ran the event so I made new friends and tried to flirt with the cheerleaders. Did you know that cheerleaders are great incentive for a guy to wear his glasses? Don't want to miss those pretty ladies!
Although I have been truckin' along and learning lots of new things, I have had a few challenges lately. Hey, maybe one of you might be able to help a guy out? If anyone reading this has ever had a little kid like me with a chromosome deletion who gets RANDOM HIGH FEVERS, please contact my Mom. A couple times my fever was over 102 suddenly and with no other symptoms or warning. We have had blood tests (oh, now that's LOTS of fun), spoke with all the doctors, and now Mom is now keeping a fever log. She wonders if it is a temperature control mechanism which is shorting out, or perhaps my immune system is immature. SHE WANTS ANSWERS! So if anyone has ideas or experience with FEVERS, please pass them along our way! At least when I am feeling pokey, my friend Coal will snuggle me in bed!
On the plus side, all the tortuous hours of therapy are paying off! I'm just kidding, I love my PT and OT peeps. Here I am looking extremely handsome while using a spoon. The special angle really helps with my pesky hands! I'm making progress with grasping and using my finger and thumb - check out my therapy page for some good ideas for exercises!
My vocabulary is steadily expanding and I can repeat lots of words. Even the ones Mommy would prefer that I didn't! Hey, she should watch how she talks on the phone! One of our goals is to push for speech therapy, especially since I am so excited about new words now. Mom was told that I would not be receiving speech assistance and so she is looking to see how we can change that. There are lots of laws and rules and systems in place for kids with special needs. We have been very blessed to be led towards some awesome people and therapies which have changed my life. Some kids have a harder time finding the services they need. We want to learn WHAT to ask for, WHAT programs I qualify for, WHO to go to for help when we have questions and WHEN it's important to fight and when we need to just move in another direction. We hope to post links to programs and websites that will answer those questions for other families so if anyone has ideas for our links page, let us know!
That's it for me for now! Keep in touch everyone! Looking forward to summer and all the fun and adventure my big brother Carter and I can possibly find! By the way, HAPPY 4TH BIRTHDAY TO THE BEST BIG BROTHER A GUY COULD EVER HAVE :)
Hello Friends! Happy Global Genes Day! Around the world, many folks are raising awareness of rare genetic diseases! So little is known, as we have learned with my deletion. Here is what my Mommy wrote on Facebook today. She loves me, but she loves ALL little kids, too!!
"7,000+ rare diseases-..1 in 10 Americans have some sort of rare disease-50% are children-30% won't live to see their fifth birthday-95% have not one single drug treatment.
Those statistics speak volumes.
My genetics appointment spoke volumes.
There needs to be more research..there needs to be better documenting and tracking. If we can learn from each others cases and find treatments for these kiddos then there is no reason they can't live a long happy life!
I am so blessed to be apart of this. After genetics so far only one other kiddo is close to Wyatt..that gives us the amazing opportunity to beat all odds and raise the bar. He is walking..he can say some words..and most importantly he is so so happy. No matter what the battle in our future he is so strong and so brave with so many people in his corner. He might take his time to get there but we will all be there waiting to cheer him on! I love you Wyatt and I am so lucky to be apart of this journey."
OH MY GOSH! WHAT A BUSY WEEK! I know I don't sleep much, but man could I use a good nap! We started on Monday with a visit up to Lucile Packard Children's Hospital to visit with the Genetics Team! HOW APPROPRIATE since Global Genes Day is on Thursday this week! My mom asked lots of questions and gave them lots of information as to my physical and mental development. They talked about how important it is for kids like me to be registered in global databases so hopefully (fingers crossed) we will find kids with similar deletions and someday a Case Study can be published, which will provide doctors from all over the world with specific information about what a deletion at 3p14.1p13 means.
THEN, on Wednesday, we went BACK up to Stanford to have what we hope is my last big test! The Neurologist scheduled an MRI to see what is going on in my brain and how it is growing and developing! I hope they are ready to see some seriously amazing stuff in there! We will have some results in a few days. It should be interesting! As for me, THANK GOD it's over! You know they wouldn't let me eat all morning again!! Do I LOOK like I need a diet?? Holy cow!! That didn't stop me from running around like a madman and flirting with the nurses (see the photo above). No Sir, a guy has gotta have his fun!!
Hey everybody! It's me, Wyatt! Guess what? There is a really cool event coming up that helps people understand a bit about how rare and unique genetic diseases are and how important sharing information and research is for all us special little people (and special big people too). Check out the website that explains more about the event and other cool stuff! My mom is working with other nice folks at Starbucks to participate in this event in a big way!
"World Rare Disease Day World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.
The sixth annual World Rare Disease Day will be held on Thursday, February 28, 2013. On this day, various activities take place in the United States, Europe, Russia, Japan and elsewhere around the world."
Can you imagine that just four months ago I had a walker? Look at me now!!! Wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hi Friends! How are you all doing? I have been the busiest little boy! Preschool has been super fun, I love my friends there and the teachers show me new things every day! Of course, circle time with "Wheels on the Bus" is my favorite, no wait, "I'm a Little Teapot" is my favorite, oh geez, I guess I love it all! Except for the other day, that is. I got my head stuck in a wrought iron shelf support and the poor teachers almost had to call the fire department to get me out! What a day!
Therapy has also been going really well! Be sure to check out the video of the "stairmaster" training! I'm starting to really increase the strength in my quads!!
Did you all have a nice Valentines Day? We had a party at preschool and I brought home valentines and treats from all my buddies. Shhh, don't tell, but there's this little girl in my class who sure is extra nice!
Speaking of Valentine's Day, my brother Carter was helping me fine-tune one of my newest phrases: "I Love You!" Our doggie loves us, too!
I finally got my new specs! Aren't they awesome? After not having them for awhile, I am super grateful and not pulling them off as much. It actually is pretty cool to see where I'm going! Once again, THANK YOU to all the secret elves who helped me replace my glasses.
Lots happening lately! Check out my therapy page for some new videos about feeding! I'm getting the hang of the spoon thing! Here are Mom's notes: "Excited to shift our focus to feeding, oral sensitivities, and his issues with texture! Our therapists have the best ideas like when he becomes resistant to using the spoon tapping his elbow is like a prompt..he automatically went back to feeding instead of fussing! Definitely has issues with texture from day one as he even grimaced on breast milk. The therapist mixed goldfish in apple sauce to get him used to/introduce multi-textured foods!..Mommy is learning as much as Wyatt. it's great!"
Also, we found a program in Monterey for my puppy, Holly, to learn how to become a service dog for me. Is that cool or what? She is at the perfect age for training and will start in a month. I wonder what tasks she will be able to help me with?
Hi friends! Another wild exciting day at Lucile Packard Children's Hospital! EEG TEST! First of all, let me tell you how Mom was instructed to keep me awake the night before so I would be sleepy for the test. She is usually trying to get me to SLEEP so this whole idea was a little weird. We made it to the hospital early so I was able to show the ENTIRE first floor how awake I was by running full speed through the halls for 45 minutes! Yee Haw!
The fun was short lived, however. I should have known!
Wikipedia says: "Electroencephalography (EEG) is the recording of electrical activity along the scalp. EEG measures voltage fluctuations resulting from ionic current flows within the neurons of the brain. In clinical contexts, EEG refers to the recording of the brain's spontaneous electrical activity over a short period of time, usually 20–40 minutes, as recorded from multiple electrodes placed on the scalp"
To start, I was pinned down by some very nice (?) EEG technicians who glued electrode things all over my head with wires connected. I don't care how tired a guy is, this was a bit upsetting! I cried pretty hard during this process and when I was all glued up and given a turban, Lisa, the technician, dimmed the lights and I went right to sleep!! Finally a nap!
Lisa monitored my brainwaves for 15 minutes during sleep and Mom and Gramma got to see how the whole thing worked .
This would not have been so bad, but after the first 15 minutes, they woke me up. Yikes! You have GOT to be kidding me!! Apparently, testing is done in the awake state and also with a strobe light (that was cool) and with me awake, but with my eyes closed. Luckily, Lisa put on some cool music and I was ok for the second part of the test. Although I really wanted to go back to sleep! It went pretty quickly after that, Lisa gave me a sweet bear to take home for all my trouble, and we were back in the car for the ride home before long. Mom can expect results back in a week or so to see if there is any signs of seizure. An interesting test but man, am I glad that it's over!
My name is Wyatt Hawkins and my Mom and Gramma are helping me share my adventures. Typing isn't my thing....YET!