Monday, September 27, 2010
I made them for a friend who started with a goal of 500 but now she is shooting for 1500 legwarmers to donate to the PICU at Primary Children's Hospital. That is where her little Makenzie spent her last days. Makenzie is her inspiration for this project. She is doing an amazing job in behalf of her little angel.
When I was out looking for socks they did not have any women's so I went to the girls section and thought I would try these. After I bought them I thought of all the newborns who end up in the PICU. My niece for one was only 7 weeks old. I think it is so hard for the parents to see their baby in a diaper only. With these legwarmers it will give those parents something to smile about.
To get the pattern and find out more visit her blog http://www.kendraandryanwebster.blogspot.com/.
If you don't sew at all you can buy them and donate too.
Thanks for your help. Also don't forget to keep voting to help fight SMA http://www.voteforsma.com/. Vote for the Gwendolyn Strong Foundation. Vote everyday until the 29th.
Thursday, September 23, 2010
This summer Lenn was gone most of the time so when he was home we decided to make the most of it. Owen has been healthy but you never know what tomorrow will bring. We wanted some family memories so we now have a few.
Owen is doing as well as he can. They are still surprised when we go to Primary's to see that he is doing so well. He does not have the reserve that he used to. He panics when the vent is disconnected for more than a few seconds. He cannot move his hands or fingers anymore. He can still barley move his ankle but his facial expressions are more than amazing. He gives us kisses, when he is in the mood. He is still such a blessing in our lives, and I would not trade him for the world.
1. Owen touched the temple. We had been wanting to do this and Owen was having an okay day so off we went. (After that he seemed to be back to normal, he so has our number.) 2. Owen petting a baby goat. 3. Owen saying hello to his Dad after a long time of being gone. 4. He made it to a few of Bentley and Abby's softball games. 5. We got brave and took Owen to a movie. Yes, a movie and he loved it, then we went to eat and hurried home.
1.What big sister can resist in dressing up her little brother. He loved the flower in his hair, or maybe it was the fact that Abby was laughing and giving him all the attention she could. 2&3. We went to the park and Owen loved watching the leaves rustle in the trees. 4. Abby let him help her stir her cup cake mix. He was not real sure about that. 5&6. Bentley and Abby were playing with the camera while I was holding him and the pictures turned out great. 7. Grandpa Johnson loves playing with Owen and Owen loves it too! 8. I can just imagine what he is thinking with Abby and Olivia kissing him at the same time. 9. We even took Owen to the Demolition Derby. He loved the noisy cars!
1. Owen loves Bentley. 2. Owen got used to his new stander and loves being in it now. 4. Owens' eyes. We don't get to enjoy these as much as I would like so I love this picture. His eye lids are getting weaker, especially his left one. In this picture you can't tell. Aren't they beautiful? 5. Owen loves to watch us help him color.
1. Kynlee kissing Owen's hand. Owen's cousin loves him and is beginning to show it. When she comes she wants to get to baby Owen. One night while she was drinking her bottle she had to pat and rub Owen's hand. It was so cute. 2. Owen has learned to show off his front teeth and he thinks it is funny. 3. Kynlee asking Owen if he wants "more" of her drink. 4. Owen looking to see if his lights are on. 5. Owen giving his best smile.
Thursday, September 16, 2010
Our SMA story...
It started January 3, 2008 when Owen was born. He couldn't cry, he couldn't move and no one knew why. We were in shock, we were heartbroken and could not believe what we were now experiencing.
They drew Owen's blood, did CAT scans, EMG test and in the end found nothing with an exact diagnosis. The blood tests came back negative or unconfirmed. We had a indescribable feeling that we should trach Owen, so he is still with us today.
Two years later on March 30, 2010 Landry was born. He was a little stronger but still very weak. We chose differently with Landry. We chose to bring him home to love and cherish, rather than have our family spilt and him being poked and prodded. Some people don't agree with our choice and it may have been different if we had any answers with Owen but we feel good about the decision we made. Landry earned his angel wings on April 21, 2010.
Just recently we spoke with a genetic counselor and the neurologist and to put it plain and simple they just don't know. This is motor neuron disease and it has SMA all over it but it is an unidentifiable gene. Which means they do not know where to even begin looking for the mutation. The neurologist thinks it is x-linked SMA, very rare and very new. The x-linked gene was found the November before Owen was born. His mutation was not found on that gene. He more than likely has a form of SMA that has not been discovered.
When I think of that it makes me want to do all I can when I hear of these contests to raise money for research funding. If they can cure the more common forms of SMA than that brings them that much closer to find a cure for all the rest.
In the end, this disease has given us two beautiful children that have brought us so many blessings and heartaches. It has changed us forever and made us different people hopefully for life. We cherish more moments. We have more empathy for those going through hardships. We love each day just a little more. We try harder not to take everyday for granted. We love more. We believe more. We are closer.
That being said please vote for these precious babies and these families that endure this. What more of reason could you need? Look at these boys.
PLEASE VOTE: It’s really this simple –>
1. You can vote once EVERY DAY from now until September 29th at 5 PM EDT
Go to www.VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click “Vote Now!”
2. That’s it! It’s really that simple
3. Don’t forget to add your name to the www.DailyVoteReminder.com list so you don’t miss a $20K vote.
4. And…don’t stop there — SHARE!
Thanks in advance for the votes.