April 10, 2011

Update 4/10/2011

My parents visited us for a week and it was great! It was a busy week but it felt good to get daily hugs from my mom, rant about the political climate with my dad, and cross many items off of my to-do list.

First, Grant's ear tubes and tongue surgery/procedure went well. Grant was a champ and charmed all the nurses and doctors as I educated them on Fragile X Syndrome. While I know it is a rare disorder, it still is very disconcerting to me that most medical professionals know little to nothing about it. However, they ask great questions and allow time for me to present my mini-lecture on the syndrome. Trust me - you ask and I will tell. :)

Second, Wesley's blood work for the Fragile X test went smoothly. Thinking about the possible results sends me into a tailspin so I am forcing myself to not think about it until we get them. Hopefully we will hear something in about 2 more weeks. In the meantime, Wesley is progressing wonderfully! He is walking around with confidence, climbing stairs in records speeds, babbling up a storm, pointing to random household items and pictures in books (which, of course, I love to take the time to tell him about each item), waving bye-bye, repeating various sounds, stacking rings, pushing his favorite trucks around the house, throwing balls, and instigating some trouble with big brother.

Unfortunately, Wesley's 12-month wellness check-up had some frustrating news. His diet has been of great concern to me the past couple months. Basically, Wesley doesn't eat. He would prefer to drink his diet in milk but even that isn't overly impressive. It's not that he cannot eat - he has proven that he has the ability to eat all foods - he just eats a couple bites and then is done. Playing is a much higher priority to him. I brought my concerns up with the doctor and he agreed. Wesley's weight has dropped from the 50th percentile down to the 10th percentile. So that means I will be monitoring him even more closely (if that's possible) and pulling out even more of my hair trying to get him to eat eggs, yogurt, PediaSure smoothies, peanut butter, avocados, and whatever else I can beef him up with on the daily basis. Also, the doctor listened to Wesley's heart and felt that it would be a good idea to refer him to a cardiologist. I am praying that it is just a "cover the bases" referral. Wesley does have a heart murmur (as do I) and it does sound "innocent" (just like mine) but people with Fragile X can possibly have some minor heart issues... so to the cardiologist we go!

Lastly, my dad and sweet hubby worked hard all week to construct our new, fabulous playset! Thanks to wonderful family, we are blessed to have a play structure for the boys (thank you, thank you, thank you). Grant tries to escape the house every moment he can to play on it. He constantly runs back and forth between the swing and the slide signing "more, more!" Needless to say, we will be spending as much time as we can outside and will enjoy this wonderful blessing for years to come.


The other day a friend of Grant's came over to play for a little while.
It was fun to hear their laughter and see them run around together.



1 comment:

  1. LOVE the pictures! They will have SO much fun on the playset...one of my favorite things is watching our kids play till they are sweaty and dirty on ours :)

    ReplyDelete

April 10, 2011

Update 4/10/2011

My parents visited us for a week and it was great! It was a busy week but it felt good to get daily hugs from my mom, rant about the political climate with my dad, and cross many items off of my to-do list.

First, Grant's ear tubes and tongue surgery/procedure went well. Grant was a champ and charmed all the nurses and doctors as I educated them on Fragile X Syndrome. While I know it is a rare disorder, it still is very disconcerting to me that most medical professionals know little to nothing about it. However, they ask great questions and allow time for me to present my mini-lecture on the syndrome. Trust me - you ask and I will tell. :)

Second, Wesley's blood work for the Fragile X test went smoothly. Thinking about the possible results sends me into a tailspin so I am forcing myself to not think about it until we get them. Hopefully we will hear something in about 2 more weeks. In the meantime, Wesley is progressing wonderfully! He is walking around with confidence, climbing stairs in records speeds, babbling up a storm, pointing to random household items and pictures in books (which, of course, I love to take the time to tell him about each item), waving bye-bye, repeating various sounds, stacking rings, pushing his favorite trucks around the house, throwing balls, and instigating some trouble with big brother.

Unfortunately, Wesley's 12-month wellness check-up had some frustrating news. His diet has been of great concern to me the past couple months. Basically, Wesley doesn't eat. He would prefer to drink his diet in milk but even that isn't overly impressive. It's not that he cannot eat - he has proven that he has the ability to eat all foods - he just eats a couple bites and then is done. Playing is a much higher priority to him. I brought my concerns up with the doctor and he agreed. Wesley's weight has dropped from the 50th percentile down to the 10th percentile. So that means I will be monitoring him even more closely (if that's possible) and pulling out even more of my hair trying to get him to eat eggs, yogurt, PediaSure smoothies, peanut butter, avocados, and whatever else I can beef him up with on the daily basis. Also, the doctor listened to Wesley's heart and felt that it would be a good idea to refer him to a cardiologist. I am praying that it is just a "cover the bases" referral. Wesley does have a heart murmur (as do I) and it does sound "innocent" (just like mine) but people with Fragile X can possibly have some minor heart issues... so to the cardiologist we go!

Lastly, my dad and sweet hubby worked hard all week to construct our new, fabulous playset! Thanks to wonderful family, we are blessed to have a play structure for the boys (thank you, thank you, thank you). Grant tries to escape the house every moment he can to play on it. He constantly runs back and forth between the swing and the slide signing "more, more!" Needless to say, we will be spending as much time as we can outside and will enjoy this wonderful blessing for years to come.


The other day a friend of Grant's came over to play for a little while.
It was fun to hear their laughter and see them run around together.




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1 comment:

  1. LOVE the pictures! They will have SO much fun on the playset...one of my favorite things is watching our kids play till they are sweaty and dirty on ours :)

    ReplyDelete