Mason had a day full of fun with Daddy today *sarcasm intended*. :) Our little man is getting so big and with growing bigger comes attitude - the "don't you dare touch me" attitude with every nurse and doc that entered the room...
Mason had an EEG last week. (EEG is when they attach 20 or so electrodes to his head, expose him to flashing lights, get him to fall asleep and monitor the brain electricity). The results were NORMAL! :) Dr. Koehn is surprised that Mason is not having constant seizures with his cortical dysplasia diagnosis but to even have a normal EEG? FAN-freakin-TASTIC! She thinks that maybe his cortical dysplasia is NOT causing the seizures and maybe, just maybe, he grew out of them. His last seizure was March of 2011 (*knock on wood*) and counting...
Mason's G-tube was changed out by the GI doc and we figured out the reason it was so difficult to change was because we weren't using lubricant. That should make it easier from now on. They also discussed his diet...and trying to get him more of our foods. They suggested we continue to try and feed him pieces of what we eat but then pureeing our dinner and giving that to him via G-tube. So tonight, for the first time, Mason had pureed tuna helper. Yummy, huh? You would have gagged if you would have seen it in that consistency, but at least he got some protein! Turns out we have also been receiving some G-tube extensions each month that we have been discarding because they weren't the ones we were used to using. They do not have a "nitch" in them like his normal ones making bolus foods easier to pass through. So this will open up some possibilities for giving him normal foods in the pureed form.
Mason had botox in his legs and hands again. This will continue every 3 months to be on top of his muscle tone. It's apparent when he gets close to his due date for a new dose because he is more irritable with therapy, standing, walking, etc. He also had his AFO's adjusted so they are more comfortable. He has been skipping gait trainer therapy since his AFO's were so tight but he's going to be back to that starting tomorrow at school. He isn't going to like it...
Chris asked about van accessibility options for down the road...so that we can plan our next vehicle and getting it adapted for Mason. There is this new vehicle made especially for wheelchair-ridden folks but I'm not sure I could bear to drive this down the road. More realistically we'll look at a used van and have it adapted locally.
Speaking of new rides, Mason had a new stroller ordered so that we can take him more all-terrain! This thing is adult-sized so he's going to look tiny it in once we get it. Next year we will be placing an order through insurance for a wheelchair that will last the next 3-5 years, so because our insurance will only approve one "wheelchair" every 2 years, they are providing this stroller through the Children's Miracle Network. I am in awe of how wonderful this organization has been for us. So far they have provided us with Mason's stander, his tomato chair (which allows us to take him out to eat with us and sit at the table like a big boy!) and now this. Absolutely blessed. We also ordered a new gait trainer through insurance so I look forward to that battle...
As far as height/weight, Mason lost a few lbs but grew 2 1/2 inches. He's a tall, lanky almost 5 year old! He's getting so big its amazing.
So the next clinic is 6 months out and we hope to return with lots of new progress!
Tuesday, November 27, 2012
Monday, November 19, 2012
Thankful
Chris and I have so much to be thankful for this holiday season.
We are thankful for two beautiful children. Both of them have changed our lives in different ways.
Mason continues to amaze us in the ways he shows us how smart and perceptive he is. The stories we hear from daycare and school make us giggle because we know exactly what the teachers are talking about - he's got a sense of humor, a real understanding of emotions and a genuinely good heart. Getting him into daycare was a challenge this fall, but we are so thankful for the great friends he has made. At a recent drop-off, Chris was stopped by a parent of a fellow student. She expressed thanks to us for having Mason at their child's daycare because it teaches her child that all kids are unique and special. We know! :) We have a very unique and special one! We are glad to hear that Mason is touching other hearts the way he touches ours.
Jordyn continues to amaze us with new expressions and sounds each day. She is a very good-spirited baby and rarely fusses. She seems to be just as perceptive as her big brother, quieting down when she hears another baby cry. I am taking in as much of the "baby moments" as I can because I feel like we missed out on so many with Mason when we were distracted by the stress. Going back to work part-time (at least temporarily) was the best decision for Jordyn and I. I get to spoil her on our days alone and miss her just enough when I go to work that I savor each moment together a little more. She is going to be a wonderful little sister and we are excited to see her grow.
We are thankful for our new home.
We are lucky that we were able to build the home we dreamed about for our family. Each detail was carefully planned out so that we can spend our next 30+ years here. Although building a home can be stressful, its done and we get to enjoy the newness of it all. We love hosting, starting a fire in the fireplace (more Chris than I), and relaxing. If anyone would like to come over for dinner - let's book something! :) I've already got a wine night on the calendar with the girls!
We are thankful for our great family and friends.
Thank you to everyone that came to our open house! We were so happy to share our new house with all of you and see everyone again! Chris and I have been so busy the last couple years that we've lost touch with some very good friends but it was nice to catch up with some of you! We hope to do that more and more...get back in touch with good friends and make more memories. Our family is pretty awesome also. Our family is so incredibly supportive when we need them, we can't thank them enough for all they do for us. We hope that we are there for them when they need us too.
We are thankful for great jobs.
Chris and I are so thankful for jobs we enjoy, as well as the great coworkers that come with them. By far the most important benefit we both enjoy is the flexibility our jobs offer when our family becomes our #1 priority. But more than flexibility even, the understanding. All of our coworkers have become friends. Our jobs challenge us, sometimes more than we'd like...but it keeps our lives interesting. We are thankful, also, for the income it provides to create the life we've always wanted - to be able to live in a nice home, support our children, maintain our hobbies, and hopefully, someday...retire and travel.
We are thankful to have faith.
Although we are admittedly not regular church-goers, there is definitely evidence of God in our lives and we thank him often. Even when things are hard, we have faith to pull us through it, making us stronger. We don't always understand the hand we've been dealt, but there is a reason for everything and someday we will come to understand it all. In addition to God watching over our family, we have many special angels that we are excited to reunite with someday. All of our angels are present with us and make their presence known in the most beautiful ways. We would like to thank all of them for their constant love.
What are you thankful for?
We are thankful for two beautiful children. Both of them have changed our lives in different ways.
Mason continues to amaze us in the ways he shows us how smart and perceptive he is. The stories we hear from daycare and school make us giggle because we know exactly what the teachers are talking about - he's got a sense of humor, a real understanding of emotions and a genuinely good heart. Getting him into daycare was a challenge this fall, but we are so thankful for the great friends he has made. At a recent drop-off, Chris was stopped by a parent of a fellow student. She expressed thanks to us for having Mason at their child's daycare because it teaches her child that all kids are unique and special. We know! :) We have a very unique and special one! We are glad to hear that Mason is touching other hearts the way he touches ours.
Jordyn continues to amaze us with new expressions and sounds each day. She is a very good-spirited baby and rarely fusses. She seems to be just as perceptive as her big brother, quieting down when she hears another baby cry. I am taking in as much of the "baby moments" as I can because I feel like we missed out on so many with Mason when we were distracted by the stress. Going back to work part-time (at least temporarily) was the best decision for Jordyn and I. I get to spoil her on our days alone and miss her just enough when I go to work that I savor each moment together a little more. She is going to be a wonderful little sister and we are excited to see her grow.
We are thankful for our new home.
We are lucky that we were able to build the home we dreamed about for our family. Each detail was carefully planned out so that we can spend our next 30+ years here. Although building a home can be stressful, its done and we get to enjoy the newness of it all. We love hosting, starting a fire in the fireplace (more Chris than I), and relaxing. If anyone would like to come over for dinner - let's book something! :) I've already got a wine night on the calendar with the girls!
We are thankful for our great family and friends.
Thank you to everyone that came to our open house! We were so happy to share our new house with all of you and see everyone again! Chris and I have been so busy the last couple years that we've lost touch with some very good friends but it was nice to catch up with some of you! We hope to do that more and more...get back in touch with good friends and make more memories. Our family is pretty awesome also. Our family is so incredibly supportive when we need them, we can't thank them enough for all they do for us. We hope that we are there for them when they need us too.
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| There is no such thing as a perfect picture when the kids are involved. Kudos to Caleb, though. :) |
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| It's becoming increasingly difficult to fit us all in one picture. :) |
Chris and I are so thankful for jobs we enjoy, as well as the great coworkers that come with them. By far the most important benefit we both enjoy is the flexibility our jobs offer when our family becomes our #1 priority. But more than flexibility even, the understanding. All of our coworkers have become friends. Our jobs challenge us, sometimes more than we'd like...but it keeps our lives interesting. We are thankful, also, for the income it provides to create the life we've always wanted - to be able to live in a nice home, support our children, maintain our hobbies, and hopefully, someday...retire and travel.
We are thankful to have faith.
Although we are admittedly not regular church-goers, there is definitely evidence of God in our lives and we thank him often. Even when things are hard, we have faith to pull us through it, making us stronger. We don't always understand the hand we've been dealt, but there is a reason for everything and someday we will come to understand it all. In addition to God watching over our family, we have many special angels that we are excited to reunite with someday. All of our angels are present with us and make their presence known in the most beautiful ways. We would like to thank all of them for their constant love.
What are you thankful for?
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