Someone sent this to me via email and I'm sure you have seen this but if you have not it's a good one...
Bill Gates recently gave a speech at a high school about 11 things they did not and will not learn in school. He talks about how feel-good, politically correct teachings created a generation of kids with no concept of reality and how this concept set them up for failure in the real world.
Rule 1: Life is not fair - get used to it!
Rule 2: The world won't care about your self-esteem. The world will expect you to accomplish something BEFORE you feel good about yourself.
Rule 3: You will NOT make $60,000 a year right out of high school. You won't be a vice-president with a car phone until you earn both.
Rule 4: If you think your teacher is tough, wait till you get a boss.
Rule 5: Flipping burgers is not beneath your dignity. Your Grandparents had a different word for burger flipping: they called it opportunity.
Rule 6: If you mess up, it's not your parents' fault, so don't whine about your mistakes, learn from them.
Rule 7: Before you were born, your parents weren't as boring as they are now. They got that way from paying your bills, cleaning your clothes and listening to you talk about how cool you thought you were. So before you save the rain forest from the parasites of your parent's generation, try delousing the closet in your own room.
Rule 8: Your school may have done away with winners and losers, but life HAS NOT. In some schools, they have abolished failing grades and they'll give you as MANY TIMES as you want to get the right answer. This doesn't bear the slightest resemblance to ANYTHING in real life.
Rule 9: Life is not divided into semesters. You don't get summers off and very few employers are interested in helping you FIND YOURSELF. Do that on your own
time.
Rule 10: Television is NOT real life. In real life people actually have to leave the coffee shop and go to jobs.
Rule 11: Be nice to nerds. Chances are you'll end up working for one.
I love it! Think I might print this and post on the fridge for the kids to read everytime they are looking for a snack :)
I'm a child of God, a daughter to wonderful parents, wife to an amazing husband, Mother to 4 little Hams and a friend to many. Our youngest son was born 6 weeks premature with multiple birth defects. He is Globally Developmentally Delayed, Intellectually Disabled and has a diagnosis of a Defect in Complex I of his Mitochondria. Follow us while we learn our new "typical". We are living and learning everyday and praising God every moment for our blessings!
-
Tuesday, December 28, 2010
Monday, December 27, 2010
Winter Wreath
This Christmas I saw this awesome Christmas wreath here and decided I would attempt to make my own. So I got to work, made a couple of changes and ...
So ever since I made it I've been dreading the fact that I would have to take it down after Christmas so the girls and I hit up Michaels this afternoon for some inspiration and some super big after Christmas sales and got all of this....
The ribbon and swag were 70% off and I used my 40% coupon off for the H my total at the register was $8.40.
I wanted something glittery and "snowy" so I came home and went to work and here is what I came up with for our winter wreath...
I threw the little cardinal in to add a a little color...what do you think?
Now, what shall I do for Valentines Day?
The ribbon and swag were 70% off and I used my 40% coupon off for the H my total at the register was $8.40.
I wanted something glittery and "snowy" so I came home and went to work and here is what I came up with for our winter wreath...
I threw the little cardinal in to add a a little color...what do you think?
Now, what shall I do for Valentines Day?
Friday, December 24, 2010
Merry Christmas!
Merry Christmas from our family to your family!
Luke 2:13-14
And suddenly there was with the angel a multitude of the heavenly host praising God and saying, (14) “Glory to God in the highest, and on earth peace among those with whom he is pleased!”
Saturday, December 18, 2010
Homemade Christmas Gifts for Teachers...
With 3 kids in school, buying teacher gifts every year can get expensive so this year we decided to make gifts. I LOVE receiving homemade gifts. The kids got involved and we decided what we would do and than we hit up the dollar store and here is what we came up with...
We used blue totes from from the dollar store for Jake and Gracie's teachers and Jake's Gifted/Talented teacher. We used a cricut to cut out yellow vinyl (school colors) and put each teachers name on them. Anna Claire picked red and black for her preschool teacher. I figure they can use them to store stuff in like books or papers after the holiday!
The kids helped me come up with the wording for the antibacterial soap. We bought a big bottle of soap and peeled off the front label. I had some left over transparencies from a project Jake did a couple of years ago. We typed it up on the computer and printed it out, rolled it up and put it down in the bottle. We personalized each one for the teachers. Teachers always need antibacterial soap and I figure they can refill it when it runs out. The ribbon was left over from another project.
This was fun and easy! The board is from the Dollar store, the kids sanded it down, spray painted it white and I printed off vinyl using the cricut and personalized for each teacher. We drilled holes in the top, used some left over ribbon and hot glued it to the back. Each kid wrote a message on the back for their teacher and wrote the date on it with a sharpie. It's small enough they can hang it on their tree or on their door knob in the classroom!
This was Anna Claire's job - she filled each dollar store jar with soft peppermint candies and ate a few along the way :)
All wrapped and ready to go and since school was cancelled the last two days they will have to wait to get them after the new year! Except, Anna Claire's teacher was lucky enough to get hers already!
Oh, and we made these goody bags for the Preschool helpers and other favorite teachers of Anna Claire's. We made Cracker Candie and filled 'em up... have you ever had Cracker Candie? Holly Cow, it is delish, and I saw someone refer to it as Crack Candie 'cause it's that delish...Try it for yourself....
Preheat the oven at 350. Line a cookie tray with aluminum foil, spray with Pam, line the entire pan with saltine crackers, melt 1 cup of sugar and 2 sticks of butter, pour over the crackers and put in the oven for 7 minutes. When the timer goes off, turn the oven OFF. Sprinkle an entire bag of chocolate chips on the top and return to the turned off oven for 7 minutes. When it is done, use a spoon to spread the melted chocolate all over, put in fridge to harden.
Don't say I didn't warn you....
So all in all we spent about $15 for a total of 9 gifts...
So all in all we spent about $15 for a total of 9 gifts...
Monday, December 13, 2010
Girl Time...
I love spending time with my girls and it's so much fun now that Anna Claire is getting older! They both had a friend over on Sunday and we decorated cookies, made Christmas ornaments and played some Candy Land...So MUCH Fun!!!
Here are pics of our fun day...
Here are pics of our fun day...
I made cookies and had them all ready when they arrived...
Gracie and her friend Ally - they have been friends since preschool! Such a sweet friendship, I hope they always stay friends!
Thursday, December 9, 2010
True Strength
What a week this has turned out to be. Many times I had to remind myself of one of my favorite quotes:
I think a lot of my problem on Monday was that I was dreading Tuesday. Tuesday we had to take Ethan over to the hospital for his 6 month renal testing. So the roller coaster of having a special needs child started for me bright and early. Shari (Ethan's daytime Nannie) met us at the hospital and the testing began. I have seen enough ultrasounds and dye tests to know when something doesn't look normal. The tech became very concerned and stopped and just stared at the screen. I already knew just by looking at the ultrasound that we might be in a bit of trouble. The Ultrasound Tech left and went in to talk to the radiologist....FOREVER...
And than I get home and see his sweet face
and I am reminded by Angel Charlotte that "Everyday is a Bonus" and I keep going and I get a phone call from the Nephrologist saying that she reviewed the disk and thinks we dodged a bullet and we can buy a little time and I sigh and thank God and am reminded:
“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.” Christopher Reeve
So while I can't always hold it together I know that I have the most amazing friends and family to fall on when I can't stand any longer...and a God who will never forsake me.
“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.” Christopher Reeve
This time of year is a very busy one for us, with 3 of the Little Hams having birthdays in November and 1 in December, getting ready for Christmas and of course the end of the year is the busiest time for me at work. I also live in constant fear, fear of every little sniffle, sneeze or wheeze that comes out of Ethan. Some nights he lays between Chris and I sleeping and I watch/listen to him for hours. Paralyzed with fear and my mind goes to places that I HATE.
I woke up Monday excited and ready to take on the week. Over the weekend we celebrated Ethan's 2nd Birthday and thanked God for what a blessing Ethan is to our family. He inspires us all every minute of every day. In lieu of gifts this year we asked that our friends and family make a donation to CJSTUF.ORG. This is a local organization that provides funding to families who have children with life threatening or chronic illness. This foundation was started after the death of a sweet Angel named Charlotte. Charlotte died at the age of 4.5 after a brave battle with cancer. It was such an honor to host a birthday party and raise money in her memory. I know that I have readers from all over and if you would like info on how you can host a CJ Party just pop me an email at energy4ethan@yahoo.com. Jake and Gracie even got in the spirit and donated their weekly allowance. Just made my heart swell with pride!
I think a lot of my problem on Monday was that I was dreading Tuesday. Tuesday we had to take Ethan over to the hospital for his 6 month renal testing. So the roller coaster of having a special needs child started for me bright and early. Shari (Ethan's daytime Nannie) met us at the hospital and the testing began. I have seen enough ultrasounds and dye tests to know when something doesn't look normal. The tech became very concerned and stopped and just stared at the screen. I already knew just by looking at the ultrasound that we might be in a bit of trouble. The Ultrasound Tech left and went in to talk to the radiologist....FOREVER...
After the test results disk was made I took it over to his Urologist who called me right away to discuss options, obviously one of his kidneys looked like it might be in trouble. I'm pretty much an open book so I immediately asked for prayers from family and friends and the prayers started coming in. The Urologist needed to get in touch with our Nephrologist to discuss. Now, I already know what lies ahead for Sweet Ethan. You see he has Grade 4-5 Kidney Reflux and has already had a Pyloplasty, a failed deflux surgery and creatnine levels that hover around 1.5 on a good day. He is at risk of losing a kidney and because both are damaged we could be in real trouble if we don't keep an eye on it and pay very close attention. We know that another surgery is in the future for Ethan (reconstruction/reimplantation) but we (docs and us) really want to wait until he is a little older and stronger.
So after not much sleep on Tuesday night, I headed into work this morning scared and afraid. Scared of the unknown and than the lovely "What ifs" creep up on me ... What if he has to have the surgery now and the skills that we worked so hard to achieve are lost, what if he doesn't make it and I have to be one of "those" Mom's. I know "those" Moms the ones who have empty arms, the ones who struggle to answer the question "How many kids do you have" when one is no longer with you. Yep, thats the crap that goes on in my head. Nice stuff, huh?
So I'm at work and my wonderful hubby starts sending me sweet little text messages reminding me that I'm not alone. I get a facebook note from a friend that I had lost touch with after college and have recently reconnected with sending me love and hugs (thanks Belynda). I get an email from one of the "Baby Mamas" and I won't mention her name because I didn't ask her if I could share but I'm gonna anyway. Here is some of the email that she sent me today:
I really do hope everything goes as good as possible with this whole nephrology issue. You should know that I am frequently inspired by you. Not to be flattering or anything, but here lately, when I have been exhausted and I feel like phoning it in as a mom I think to myself, "I only have one kid and he's healthy. Laura has 4, with one who she frequently stays up all night worrying about, and still has the umph to decorate a fake mantle with stockings for her kids Christmas. I think I can wash the dishes! =)" For what its worth, I think you are a pretty BadAss person.
And that made my laugh out loud for sure! I love how people think I have it all together and I'm a BadAss, cause the truth is I try, really, really hard but I have my moments, the ones where I cry on the phone when someone calls to check on things (thanks Jenn F for listening to that yesterday), the times when I yell at my husband for something really stupid like not starting the dishwasher, the moments where I stop in a parking lot on my way home to get the kids off of the bus and have a quick cry and than go into the bathroom at McDonalds and wash my face so they don't know. The times when I just need to have lunch with my BBFF and rant about everything and nothing important at all and than stand in the freezing cold outside and feel the warmth of her arms around me and know that it's all gonna be ok (thanks Anne Marie for helping my heart today)
And than I get home and see his sweet face
and I am reminded by Angel Charlotte that "Everyday is a Bonus" and I keep going and I get a phone call from the Nephrologist saying that she reviewed the disk and thinks we dodged a bullet and we can buy a little time and I sigh and thank God and am reminded:
“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.” Christopher Reeve
So while I can't always hold it together I know that I have the most amazing friends and family to fall on when I can't stand any longer...and a God who will never forsake me.
Sunday, December 5, 2010
A Life Like Yours...
This morning The Hanover Arc hosted a Holiday Breakfast with Santa at our Bass Pro Shop. The breakfast was catered by Islamorada Fish Company, the restaurant at Bass Pro and it was delicious!
The Hanover Arc, Inc. is an organization serving those with or at risk of intellectual disabilities and their families living in Hanover County, Virginia. It is devoted to promoting and improving supports and services for people with disabilities and their families. Members of the Hanover Arc include 200 families, self-advocates, professionals and concerned citizens. For just $25 a year you can become a member and help families just like ours! If you are looking for a great cause to support, this is it!
They have been so helpful to us. They have helped us navigate the Medicaid Waiver System as well as provide a Respite Grant that helps pay for Ethan's classes at Romp n' Roll. Their Motto is "A Life Life Yours". I am so grateful for all of the wonderful things that they are doing for children and adults here in our community who have intellectual disabilities.
Today was even more special because today is Ethan's 2nd Birthday! What a lucky kid getting to have breakfast with Santa on his birthday :)
The Hanover Arc, Inc. is an organization serving those with or at risk of intellectual disabilities and their families living in Hanover County, Virginia. It is devoted to promoting and improving supports and services for people with disabilities and their families. Members of the Hanover Arc include 200 families, self-advocates, professionals and concerned citizens. For just $25 a year you can become a member and help families just like ours! If you are looking for a great cause to support, this is it!
They have been so helpful to us. They have helped us navigate the Medicaid Waiver System as well as provide a Respite Grant that helps pay for Ethan's classes at Romp n' Roll. Their Motto is "A Life Life Yours". I am so grateful for all of the wonderful things that they are doing for children and adults here in our community who have intellectual disabilities.
Today was even more special because today is Ethan's 2nd Birthday! What a lucky kid getting to have breakfast with Santa on his birthday :)
Happy 2nd Birthday Sweet Sweet Ethan!
Saturday, December 4, 2010
I won! I won! I won!
Oh yes I did, I won! I entered a contest to win 2 tickets to Disney on Ice and I won, Love me some Richmondmom.com!!!
Anna Claire is so excited. When Gracie was 4 I took her and now Anna Claire is 4 and she gets to go. She has already planned out what she is gonna wear! So cute. I can't wait...I don't think you ever grow out of loving The Princesses!!
Anna Claire is so excited. When Gracie was 4 I took her and now Anna Claire is 4 and she gets to go. She has already planned out what she is gonna wear! So cute. I can't wait...I don't think you ever grow out of loving The Princesses!!
Thursday, December 2, 2010
The Stockings Were Hung....
One thing that is definitly on our list for the next house is a fireplace. I love decorated mantels. So when I saw this beauty at the Thirft Store for $8 I knew it was for me. I brought her home, painted her real sloppy with some brick red pant, distressed her a little, used a Cricut and cut the words out and than I ....hung the stockings!
What do you think?
What do you think?
Tuesday, November 30, 2010
Refresh my Soul
As parents, I think that we all question ourselves. Did we make the right decision? Do they know how much we love them? Am I messing up my kids? How can I get everything done? How can I be everything to everyone....and on and on and on
I recently came across a book written by Lysa TerKeurst called "Am I messing up my kids? and other questions every Mom asks" I flipped the book over and these 5 bullet points hit me like a ton of bricks:
I started reading a chapter every night before bed and love the humor and real life stories that this Mother of 5 tells in the book. But the busy week last week and holiday got in my way and I hadn't been paying attention to my nightly devotionals and it caught up with me...FAST, LIKE A TON OF BRICKS HITTING ME IN THE FACE....and I was done and needed to refresh my soul.
So tonight, I slowed down, let the laundry pile up, the dishes sit in the sink, turned off my blackberry and took some time for me and God. Had a little talk, asked him for some help and opened my book. Low and behold my devotion tonight was titled "Does God Care About Me"? The devotion was all about how woman try to do it all and how do we balance our crazy busy life. Coincidence? I think not...
So tonight, I ask you busy crazy Mom's to not forget why we celebrate Christmas this year, it's not about the perfect tree, the latest video game or the best decorated cookies in the preschool class. It's about HIM and HE reminded me tonight that he is with me always and cares about me always, even when I'm so busy and forget to give HIM the time he deserves.
I leave you with my favorite paragraph from tonights reading:
"Where this peace starts to slip is when I try to figure God out. I try to reason my way into the peace rather than praying and making the choice to stop all my toil and wondering and leave them in God's hands. Accept each step God puts before me as my temporary assignment, fulfill that part of it, and leave the rest with Him.
I recently came across a book written by Lysa TerKeurst called "Am I messing up my kids? and other questions every Mom asks" I flipped the book over and these 5 bullet points hit me like a ton of bricks:
- forgive yourself for honest mistakes
- look to the Lord for what you need each day
- refuse to be either Slacker Mom or Super Mom
- trust God with your greatest fears
- grow as a person and as a Mom
I started reading a chapter every night before bed and love the humor and real life stories that this Mother of 5 tells in the book. But the busy week last week and holiday got in my way and I hadn't been paying attention to my nightly devotionals and it caught up with me...FAST, LIKE A TON OF BRICKS HITTING ME IN THE FACE....and I was done and needed to refresh my soul.
So tonight, I slowed down, let the laundry pile up, the dishes sit in the sink, turned off my blackberry and took some time for me and God. Had a little talk, asked him for some help and opened my book. Low and behold my devotion tonight was titled "Does God Care About Me"? The devotion was all about how woman try to do it all and how do we balance our crazy busy life. Coincidence? I think not...
So tonight, I ask you busy crazy Mom's to not forget why we celebrate Christmas this year, it's not about the perfect tree, the latest video game or the best decorated cookies in the preschool class. It's about HIM and HE reminded me tonight that he is with me always and cares about me always, even when I'm so busy and forget to give HIM the time he deserves.
I leave you with my favorite paragraph from tonights reading:
"Where this peace starts to slip is when I try to figure God out. I try to reason my way into the peace rather than praying and making the choice to stop all my toil and wondering and leave them in God's hands. Accept each step God puts before me as my temporary assignment, fulfill that part of it, and leave the rest with Him.
Monday, November 22, 2010
Christmas Cards
I read an article over the weekend that asked the question "With Social Media, is sending Christmas Cards out in snail mail really needed"? My answer - YES!!!! I LOVE LOVE getting sweet cards in the mail, thank you cards, birthday invites or Christmas cards. In fact, my sons's Sunday School teacher sends him hand written notes on special occasions or if he has missed a Sunday and he looks forward to getting those and reading them. Just something about holding it in your hand, I guess!
In fact, I have been playing around with my Christmas Card design since we got back from our summer vacation at the beach. I use Shutterfly, which is my favorite for cards. I order all of my kids birthday invites from Shutterfly. You can check 'em out here. You can make really creative cards and they have great specials that they run where you can a % off of cards a lot of different times during the year. If you are not on their email list, get on it so you don't miss any cool sales.
I also use it for digital scrapbooking and they have awesome deals on that as well. In fact I made an adorable scrapbook for a friends son for his 1 year birthday and with my coupon code is was about $20. Cool gift and meaningful for a low cost!
Soooo, when I was saw a cool promotion going on for bloggers that use Shutterfly I had to jump in! If you are a blogger and want to get 50 FREE cards from Shutterfly than go read all about it right here!
So, now back to the cool Christmas Cards Shutterfly has this year....Here are some of my favs!
I'm a sucker for anything monogrammed and I love black and white photos and this one has 6 slots so enough to put pics of all the Hams! Cute Cute Cute!
In fact, I have been playing around with my Christmas Card design since we got back from our summer vacation at the beach. I use Shutterfly, which is my favorite for cards. I order all of my kids birthday invites from Shutterfly. You can check 'em out here. You can make really creative cards and they have great specials that they run where you can a % off of cards a lot of different times during the year. If you are not on their email list, get on it so you don't miss any cool sales.
I also use it for digital scrapbooking and they have awesome deals on that as well. In fact I made an adorable scrapbook for a friends son for his 1 year birthday and with my coupon code is was about $20. Cool gift and meaningful for a low cost!
Soooo, when I was saw a cool promotion going on for bloggers that use Shutterfly I had to jump in! If you are a blogger and want to get 50 FREE cards from Shutterfly than go read all about it right here!
So, now back to the cool Christmas Cards Shutterfly has this year....Here are some of my favs!
I'm a sucker for anything monogrammed and I love black and white photos and this one has 6 slots so enough to put pics of all the Hams! Cute Cute Cute!
This one is really sweet and classic and I love the Merry Christmas script at the top and the fact that it opens up so you can write a personal message inside.
My eye was drawn right to this one because of the cute colors, I love the red, pink and greens together! In fact that is my wrapping paper color theme this year.
So what's a girl to do???? With this cool promotion from Shutterfly I might just order a couple different ones. You know, like magazines sometimes do when they use different covers for the same month and you accidentally buy two of the same magazines because you love love the cover and you didn't think you had that months edition. No, I've never ever ever done that.....hope Santa didn't hear my little white lie!
Now happy Christmas Card Making....
Labels:
Shutterfly Christmas Cards
Wednesday, November 17, 2010
Here Turkey Turkey....
So, I'm a BIG sucker for those cute little applique shirts that are all the rage now for little ones. BUT, they are quite pricey at our local boutiques and even on ETSY. I saw a really cute turkey that was made from a child's hands and feet but at $25 a shirt I knew I wasn't gonna be getting those for the Ethan and Anna Claire.
So I did a little research and found this awesome DIY blog - http://treasuresfortots.blogspot.com/2009/11/tiny-hands-turkey-applique-tutorial.html and viola I made two very cute Turkey Shirts for .....$4. Yep, that is for BOTH! I had the shirts and the other supplies I needed. The only thing I needed was material and I picked it up on the clearance aisle of Ben Franklin.
Oh, I'm in LOVE.....You just wait, those poor kids are gonna be wearing a ll kinds of cute little applique shirts...I'm thinking of doing one for their birthday, for Christmas, for Valentines Day....hmmm...maybe I might just open up my own ETSY shop at $25 a pop I could make a killin :)
So I did a little research and found this awesome DIY blog - http://treasuresfortots.blogspot.com/2009/11/tiny-hands-turkey-applique-tutorial.html and viola I made two very cute Turkey Shirts for .....$4. Yep, that is for BOTH! I had the shirts and the other supplies I needed. The only thing I needed was material and I picked it up on the clearance aisle of Ben Franklin.
Oh, I'm in LOVE.....You just wait, those poor kids are gonna be wearing a ll kinds of cute little applique shirts...I'm thinking of doing one for their birthday, for Christmas, for Valentines Day....hmmm...maybe I might just open up my own ETSY shop at $25 a pop I could make a killin :)
Thursday, November 4, 2010
Celebrating Holland
It rained and rained and rained today .... but that didn't stop us from Celebrating Holland! We had a great time with 3 of our new friends. Babies played and Mommies who share a very special bond hung out. It was great and I can't wait to get to know these Mamas even more! I wanted to get more pictures but I was just so busy yapping my jaws...shocking, I know, right?
But I did get a cute one of Skylar and Ethan....
Can't wait to see our new friends next week at The Children's Museum of Richmond!
But I did get a cute one of Skylar and Ethan....
Can't wait to see our new friends next week at The Children's Museum of Richmond!
Labels:
Celebrating Holland,
Special Needs Moms
Wednesday, November 3, 2010
CJ's Meal Fairies
Alright, I'm asking for your help! Many of you who read my blog have the honor of having a Special Needs Child. Many of you have sat up all night and all day with no sleep and no food watching your child laying in a hospital bed. My friends over at CJ Thumbs Up Foundation want to win the Pepsi Refresh Challenge and provide food vouchers for parents of sick children who just like you are sitting right now watching a sick child laying in a hospital bed.
I have fallen in love with this Sweet Angel Charlotte, even though I never met her, she is dancing in Heaven now and her parents want to help other parents of sick children.
Hey folks, please vote for my friend CJ's Thumbs Up Foundation/CJ's Meal Fairies awesome idea to change America!
Please click over on the right side of my blog EVERYDAY this month and vote for them!
You can also add a badge to your blog to help them....
http://www.youtube.com/watch?v=6Fqd0YDcroM&feature=player_embedded
I have fallen in love with this Sweet Angel Charlotte, even though I never met her, she is dancing in Heaven now and her parents want to help other parents of sick children.
Hey folks, please vote for my friend CJ's Thumbs Up Foundation/CJ's Meal Fairies awesome idea to change America!
Please click over on the right side of my blog EVERYDAY this month and vote for them!
You can also add a badge to your blog to help them....
http://www.youtube.com/watch?v=6Fqd0YDcroM&feature=player_embedded
Tuesday, October 26, 2010
Mucopolysaccharide Disease - don't worry I had no clue either!
Yesterday we headed out down to UVA Childrens and met with Dr. Wilson. Our Genetic Doc here in Richmond sent us to him because she is all out of ideas and she keeps coming back to him having some type of storage disease and evidently this guy knows a thing or two about them. Dr. Wilson went through his history and said the only thing he could see missing from testing was a Microray Study. Um no, actually we already had not one but two of those suckers done, go ahead and check out page 7, paragraph 3 here in my handy dandy notebook. So he did and scratched his head a bit and said we needed to go see a doctor who specializes in mucopolysaccharide diseases. And for the Moms turned Doctors who read my blog here is what that word means:
one of a group of genetic disorders characterized by greater than normal accumulations of mucopolysaccharides in the tissues, with other symptoms specific to each type. The disorders are numbered MPS I through MPS VII, and each type has a specific eponym. All types are characterized by pronounced skeletal deformity (especially of the face), mental and physical retardation, and decreased life expectancy. The disorders may be detected before birth by testing fetal cells present in amniotic fluid. After birth, diagnosis is established through urine testing, skeletal changes observed on radiographic films, and family history. There is no successful treatment. Kinds of mucopolysaccharidosis include Hunter's syndrome (MPS II), Hurler's syndrome (MPS I), Morquio's disease (MPS IV), Sanfilippo's syndrome (MPS III), and Sly syndrome (MPS VII).
So he said there is a great doctor in Minnesota....whoa, holdup. Than he mentioned one at UNC which is about 3 hours from us so we will be hitting him up first and than I suppose if he can't figure Ethan out, Minnesota we will go....
Ethan was acting a little "off", he slept the whole day, didn't eat much and generally seemed "off". His eyes were getting really puffy which is usually a sign for him that his lactic acid levels are on the rise. I suspected he would be sick in the next 24 hours. Wish I was wrong...
When we got home his temp was over 103 and he was lethargic. I also noticed a strange odor to his urine. Great, I had just bragged to the Doctor at UVA that he had not had a break-through UTI in a year. Guess I jinxed him. He slept most of the afternoon and night but his fever got as high as 104 with Tylenol/Motrin rotation.
This morning Chris had to leave at 5 am to go to a meeting out of town. Shortly after he left, Gracie woke up complaining of a stomach ache. The next hour proceeded with her vomiting and ahem other things all over the bathroom. Lovely, very very lovely way to start our day!
Ethan went into the doctor this morning, they cathed him and were only able to get about 4 drops of urine but the nurse and I looked at each other and we both knew just by the color and particles that this kid has a UTI. So we have some really strong antibiotics to get us through the next 72 hours until the culture comes back. Oh and for a little extra drama he had a little seizure because of his high fever....so he has slept all day and still is. His fever is 102 now but he is sleeping comfortably (right next to me) so I'm sure I won't be sleeping much tonight.
Remember back in February when they tried to do the Deflux Surgery but couldn't? Since he hadn't had a UTI since last December we thought we were good but now I'm worried that his Urologist and Nephrologist will want to go forward with the Reimplantation surgery since he is still showing Grade V reflux bilaterally. Guess, I will know more in 72 hours when the culture comes back and they change his daily antibiotic.
On another note, Gracie is feeling MUCH better and is back to her "normal" self...
one of a group of genetic disorders characterized by greater than normal accumulations of mucopolysaccharides in the tissues, with other symptoms specific to each type. The disorders are numbered MPS I through MPS VII, and each type has a specific eponym. All types are characterized by pronounced skeletal deformity (especially of the face), mental and physical retardation, and decreased life expectancy. The disorders may be detected before birth by testing fetal cells present in amniotic fluid. After birth, diagnosis is established through urine testing, skeletal changes observed on radiographic films, and family history. There is no successful treatment. Kinds of mucopolysaccharidosis include Hunter's syndrome (MPS II), Hurler's syndrome (MPS I), Morquio's disease (MPS IV), Sanfilippo's syndrome (MPS III), and Sly syndrome (MPS VII).
So he said there is a great doctor in Minnesota....whoa, holdup. Than he mentioned one at UNC which is about 3 hours from us so we will be hitting him up first and than I suppose if he can't figure Ethan out, Minnesota we will go....
Ethan was acting a little "off", he slept the whole day, didn't eat much and generally seemed "off". His eyes were getting really puffy which is usually a sign for him that his lactic acid levels are on the rise. I suspected he would be sick in the next 24 hours. Wish I was wrong...
When we got home his temp was over 103 and he was lethargic. I also noticed a strange odor to his urine. Great, I had just bragged to the Doctor at UVA that he had not had a break-through UTI in a year. Guess I jinxed him. He slept most of the afternoon and night but his fever got as high as 104 with Tylenol/Motrin rotation.
This morning Chris had to leave at 5 am to go to a meeting out of town. Shortly after he left, Gracie woke up complaining of a stomach ache. The next hour proceeded with her vomiting and ahem other things all over the bathroom. Lovely, very very lovely way to start our day!
Ethan went into the doctor this morning, they cathed him and were only able to get about 4 drops of urine but the nurse and I looked at each other and we both knew just by the color and particles that this kid has a UTI. So we have some really strong antibiotics to get us through the next 72 hours until the culture comes back. Oh and for a little extra drama he had a little seizure because of his high fever....so he has slept all day and still is. His fever is 102 now but he is sleeping comfortably (right next to me) so I'm sure I won't be sleeping much tonight.
Remember back in February when they tried to do the Deflux Surgery but couldn't? Since he hadn't had a UTI since last December we thought we were good but now I'm worried that his Urologist and Nephrologist will want to go forward with the Reimplantation surgery since he is still showing Grade V reflux bilaterally. Guess, I will know more in 72 hours when the culture comes back and they change his daily antibiotic.
On another note, Gracie is feeling MUCH better and is back to her "normal" self...
Labels:
Mucopoloysaccharide Disease,
UVA
Monday, October 18, 2010
Sunday Funday? Not so much....
So yesterday started out great. We got to Sunday School right on time...which usually we are running about 5 minutes late so I thought that was an omen of good things to come....not so much!
This sweet child
Hope your Sunday was fun :)
This sweet child
acted like a complete fool 3 year old at church. She decided to plant her feet at the altar after we had finished communion and not move so I had to pick her up like a football while her dress was pretty much over her head and her tights were hanging out for the world to see all the while she screamed at the top of her lungs "I want my Daddy" as I walked her out of church. So needless to say we didn't stay for fellowship because you don't get to have fun in our house when you act like that!!!
Later in the afternoon Chris took Jake to his basketball tryouts and I took Ethan, Anna Claire and Gracie up to Kohls to pick up his new shoes since his Sure Steps are coming in this week. My goal was to get in and get out in less than 5 minutes. I knew exactly what we needed. With my coupon in hand we zipped in and out in under 5 minutes. Mission accomplished...NOT!!!
I locked my keys in the car....with my phone....and my card that has the roadside assistance number on it. So, I go back into the store with all three kids. Find someone who has a phone with Internet so I can look up the phone number for roadside assistance, go to customer service, call the number only to be told that I need to give them the VIN number of my car. I guess most people memorize the VIN number on their car because the woman thought I was crazy for not having it. So, I had to walk all three kids all the way back out to the car and look through the window and write down the VIN number, go back into the store, call roadside assistance....needless to say an hour and half later a tow truck showed up and got my keys out. To keep Ethan and Anna Claire entertained for that hour and a half we walked over to the Dollar Store and did what any other mother in her right mind would do....bought them Cheetos....
and this is what they looked like when we got home....
Hope your Sunday was fun :)
Wednesday, October 13, 2010
Special Nights For Special Needs
Tonight we went to our first Special Nights For Special Needs Event at the Childrens Museum of Richmond and we had a great time! It was so great to be around other parents of children with special needs, I never once worried what others were thinking when Ethan had a melt down. I never felt judged or stared at. What I felt was welcomed. I also met a new friend and her sweet Jimmy! I do believe that Jimmy and Ethan are gonna be buds!
I hope you enjoy the pictures as much as we enjoyed our evening...
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