Summer Time Fun!

It's hard to believe that summer time is over, and the fall season is begining. We're so ready for football, pumpkins, candy, and the holiday season that is quickly approaching. It was a super fun summer filled with lots of great memories; my only complaint is it went by wayyyyyyyy too fast. We did lots of swimming, playing outside, waterpark fun, riding the four wheeler, and visiting family. Cole had his 7th birthday this year and it was a blast, we had a blow up slip and slide and lots of swimming for all the kids to enjoy

and even the big kids too. :)  He started 1st grade this year and so far he is enjoying it. They really kicked it up a notch with the work load and classroom assignments which I think is great for him. He seems to be up for the challenge and is working hard. Reading is still his strong point and enjoys doing that everyday. He now has weekly test over his reading books as well as spelling test. And he did his first project this weekend, which I may have enjoyed more than him. This is a fun age where the work can still be fun to do and getting creative with my boy is always a treat. He had his yearly vision appt this month with the Retina Specialist and it went well. Cole was pumped and said he wasn't going to cry and was ready for those nasty drops. And then as soon as they walked in the room and he saw the bottles all of that went out the window. Once he got past the drops he did great on all the evaluations. They did adjust his prescription just a bit so they aren't as strong, he said the stigmatism was much better and he didn't see any additional spots around his retina so that was nice to hear. He also got some new and snazzy hearing aids, he's had his old ones for over 5 years which is a long time for a kid. These are made by Oticon and they are designed more for kids, this particular model was just released at the end of September so it's cool to know he is getting the latest and greatest since technology is constantly improving. So far he is really enjoying them, i'm not sure if it's because they sound better or the soccer balls on them... Hopefully both. :) He did have a new hearing evaluation to make sure they set his new devices accurately and his hearing has remained the same. One of his ears actually tested a little better compared to his last test 9 months ago so that was cool. I'm so proud of this little dude, he continues to amaze me each and every day.  Here are just a few pictures from the past couple of months. :)

                                              

Spring has Sprung...

Happy Spring to everyone, it's been awhile since I've wrote but not a whole lot of new news to report. It's been a really nice Spring season so far, usually we jump from our so-called Winter into Summer. But we've actually enjoyed a couple of month of Spring temps. The only thing we don't like is the allergies and pollen during this time. Thank goodness for allergy meds and nose spray, because we live on it during this time. It's been a pretty busy couple of months and I think Cole is more than ready for the summer fun to begin. He's been working really hard this year in school and with speech therapy, you can tell he's ready for a little break. His teacher said he has come a long way this year, his strength seems to be in reading which makes me happy. He loves to read books and loves for you to read to him. He's having to work a little harder in math in some areas. They are having a big end of the year school party at the park this month who are in the Deaf Education program, one of the Seniors is graduating. And he just happened to play football for the local high school here. It's very encouraging to see, even though these kids have different medical issues if they work hard enough and have it in their heart they can do anything they want or at least try to. They did have Field Day this month at school, and it's always hilarious to watch and makes you want to jump in and have fun with them. I remember that was one of my favorite days in school.  We haven't had any doctor's appointments recently, things have been pretty quiet in that department. He has been able to watch his daddy play in some shows the past couple of months which he has LOVED. I think Cole likes to steal the stage and put on this own show, he really gets into it and it's so funny. It's cute to watch and it's a sweet interest they both share and enjoy. :) We've been doing lots of outdoor things and we even have the pool up and ready to go. Lots of four wheeler riding going on during the pretty days, and he's having a blast on his new tree swing. Basically if we could just set up a tent outside I think he would love to live in it. :) I'm sure when summer rolls around we'll be singing a different tune. He is really excited about his Bubber's (my sister) having a baby any day now, he has watched her belly grow and talks about the baby in there. Here are a few of my favorite pictures from the past couple of months. Enjoy and all you sweet Mommy's have a great Mother's Day!

Rare Disease Day 2013

Today is a special day that unites more than 60 countries worldwide. Rare Disease Day was established as a day to bring awareness to rare diseases, which in the United States are defined as conditions that affect fewer than 200,000 people. Currently, a total of about 30 million Americans are affected by almost 7,000 rare diseases. The Rare Disease Day 2013 slogan is "Rare Disorders Without Borders" to convey the global solidarity of the rare disease community worldwide and the need for collaboration and mutual support in the field of rare diseases (www.rarediseaseday.org). This is very important to me because with Cole having PBD (Peroxisomal Biogenesis Disorder) we are apart of this community. This is joining patients, families, healthcare providers, and patient organizations around the world to support a day that focuses attention on rare diseases. It’s very encouraging to see the great strides that have been made to bring awareness and recognition to the rare diseases out there. And with the continued research they are doing I am very hopeful there will be more treatment options available and hopefully one day a cure for this disease and many others. I have been very lucky and have connected with some amazing families through various support systems. It’s nice to know you aren’t alone in this journey, we’re all faced with different obstacles but have a common bond. Please take a moment to think about and pray for those that are affected by some type of disease. Take time to celebrate life and all the precious things around you. :) And here are few pictures of the main reason I wake up every morning with a big ole' smile on my face!!!

Happy Valentine's Day!

Happy Valentine's Day from my little love monster! Hope your day is filled with lots of love and fun! Ohhhh and chocolate too! :)

Happy New Year!

We hope everyone had a Merry Merry Christmas and Happy Happy New Year! Once again the time is flying so fast, I can't believe February is right around the corner.  The holiday season was a great one for us, it's always a nice reminder of the important things in life to be thankful for. It will filled with lots of family time, eating (way too much of that), opening presents, playing, and making sweet memories. Mr. C was a busy boy and got to spend some time with lots of family, he always enjoys seeing everyone. The weather has been crazy here lately, it feels like Spring right now and we love it... but I'm sure there will be a winter storm here next week. :) We started back to school and he seemed excited to get back in the groove of things. Not a whole lot of new news to report. He did get some new glasses and I have to say he looks super cute in them. He had a hearing evaluation done this month, we took him to a local audiologist rather than going to Houston. It worked out well and she is very nice, Cole gives her a thumbs up. No changes in the hearing which is always good news, unless that little miracle happens and it gets better. We'll probably have to get him new hearing aids in about a year or so. Most of them only last about 5 years with kids and technology is constantly improving. He got his report card this month and he got an "E" (excellent) in reading, science, and math concepts!!! Way to go, we were very proud of him. He's working hard and is still doing speech therapy twice a week. Even with his busy schedule he still manages to squeeze in lots of playtime. He got a new four wheeler for Christmas and is in LOVE! He also is enjoying his Razor 360 and I have to say so does Mommy.. You're never too old to act like a kid... or at least that's what I think. :) I have to sometimes remind Cole that I'm the Mommy and he is the kid, because he likes to be bossy at times.  But he is still a very loveable and playful boy, and is super sociable. I love this kid! Here are a few recent pictures. Enjoy! :)

  

Fall Catch Up!

Hello blogging friends (if you are still out there), just a quick little update on the fall happenings around here. Cole wrapped his first soccer season. He seemed to really enjoy it, it was a great learning experience and he met some great friends. I think he enjoyed running around the most and if he felt like kicking the ball then maybe that would happen. I'm not sure if we'll do the Spring season, we'll ask him when the time gets closer. Now on to the medical updates, we'll start with doctor's appointments first.. He had his vision and hearing check up and did well for both of them. They did notice a slight change in his hearing in both ears, they want to do another test in about 6 months to make sure that's not the trend. With his condition there is a possibility everything can change and we're praying that won't happen. Unless it was a wonderful miracle and everything was to get better and I would take that in a heartbeat. :) Next he had his vision test and he didn't see any major changes, the only thing he did notice is it looks like there maybe a few more spots around the retina. These are what impairs his peripheral vision. As I've mentioned before he is not a fan of the retina specialist, at least we only have to see him once a year. And last but not least he had his 2nd laser treatment on his face, this is to help eliminate the damaged blood vessels on his cheeks. He doesn't mind this at all, they give him the "happy" juice and he wakes up and doesn't seem to have any type of discomfort which is what we want. He is working hard and is really enjoying school this year. We had a meeting with his teacher and therapist and they all had positive things to say. He loves learning and is full of personality. He got an "E" (excellent) in reading on his report card this year which is AWESOME. He usually has reading books every night for homework and loves getting in bed and working on them. He definitely has to work harder than most kids his age and is striving to catch up with his peers. Oh yea, and Halloween was a blast this year. We let him pick out his costume and he chose to be a Dallas Cowboy football player. Even though they are a VERY frustrating team to watch we still love them. And he was the cutest little player ever and could probably play better than some of them! The weather was perfect and there were lots of cute kiddos out in the neighborhood. Cole likes seeing all the different kinds of costumes, of course super hero's are always a big hit. And his favorite activties right now are riding his scooter, four wheeler, or his big truck. And skateboarding... Pretty much anything outside and ALL boy. He's come up with some pretty cool tricks on the scooter and four wheeler. I think he got some inspiration from those motorcycle videos. This kid has no fear, he's a blast to watch. The holiday season is here and we love it. It's a great time to spend quality time with family and friends,  and to remember the important things in life. Oh and eat lots of yummy food! Hello elastic pants. :) Lots of love!!!!