Thursday, October 21, 2010

Lady Who?

This could be the most embarrassing post that I have ever written. But I am going to write it anyway...becuase it's that funny. Ok...here goes...

Every Thursday, I, Leigh have to work. My mom watches Grey and they have a great time. Well, apparently she has been listening to Lady Antabellum (or however you spell it) in the car and Grey has become OBSESSED with the song 'Need you Now' (or something like that). When I say obsessed, I mean CRAZY obsessed. Like, the minute he gets into my mom's car he starts crying for "sick" as in music. And my mom, being the doting grandma that she is, plays it. Every. Single. Time. Well, the other day Grey and I were outside playing and it was getting really cold, so I told him that we would go inside and listen to music and dance. He got really excited and I thought "oh, cool he loves music...just like his dad." ahahahahaha!! Not exactly like his dad. :) I put pandora on and we hear music. Grey freaks out. I think to myself "what in the world is this kid crying about?" Then it hits me. He is expecting HIS song. Once I figured out what his issue was, I had to get it on video. Notice that he knows within seconds that the first song is not what he is after. Then, when his song finally plays the look of blissfulness that falls over his face. What a goof!! Oh, and he is staring off in the distance because the computer is there and his song is on YouTube...enjoy!! :)
video

Monday, October 18, 2010

Spina Bifida Kids Worldwide Day of Prayer




Time



Wednesday, October 20 · 12:00pm - 1:00pm




October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.

We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.

Here are a few things you can pray about specifically:
1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.

Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

Tuesday, October 5, 2010

Need a new shirt?

A fellow SB mom, Kari, had the great idea that we should come up with some sort of shirt for our online SB family! I totally agreed and thought that this was a great idea!! Since Andy is a graphic designer I enlisted his help! :) (he loves it when I do that!) So, the other night the two of us put our heads together and came up with what I think is a pretty sweet shirt that represents SB and what it means to us!! Here are a few pics of Andy and Grey working on the shirt...


And here is the final shirt...

The front...

And the back...
To us...the line on the back of the shirt is the spine, and the words make up spina bifida.

So...if you are interested in ordering one, you can go HERE and find all of the info!! I'm so glad that we could do this and I hope that you all enjoy your new shirts!!! :) You will only be able to order the shirts for ONE WEEK...so get your orders in NOW!!!

Love to all!

Sunday, October 3, 2010

A Bike for Grey...

A few months ago, Kelly, an OT that we know, emailed about an organization that was donating some Amtrykes to local kids who could use them. She thought of Grey and I am so glad that she did!! Yesterday, Grey received his bike and after a rough few minutes...decided that he loved it!

Here he is checking out his bike before it "officially" became his.


Mommy, Grey, and the new bike!
Quite a few people gathered around Grey once he was on it to check the sizing and he wasn't really a fan of all of the people.


Why are you all watching me?


I had a feeling that a cookie might help. :)

Once we were home, he became a real pro at it!

This morning, he loved it even more!



I have to add a pic of his new trick...I think that my fellow SB moms will enjoy this one. :)

Here he is loving his new bike!! Ambucs, Amtryke, and KELLY...thank you, thank you, THANK YOU!!!


video

PS...the OT, Kelly, that I mentioned...is now the mama to a beautiful new baby Grayden...who just happens to have spina bifida. He is almost ready to come home and we can't wait to meet him! Lots of love and prayers to Austin, Kelly, big brother Zander, and of course...baby Grayden! You can read their story here.

Thursday, September 23, 2010

2 years...

How can it possibly be two years already? Two years ago tomorrow, my life changed in a way that I never expected. Changed in a way that now almost defines who I am. September 24, 2008 was the day we found out about Greyson's spina bifida. I won't go into detail about that day...you all know it by now. Most of you reading this have had your own day. As I sit here tonight, I can't help but wonder if there will ever be a time where I feel like that person again. The person I was before September 24, 2008. That person didn't know anything about spina bifida, tethered cord, hydrocephalus, AFOs, the difference between a programmable vs. non-programmable shunt, the signs of a shunt malfunction, what a VCUG was, what a urodynamics was, that person most certainly COULD NOT cath someone. That person didn't lie awake at night feeling like I didn't do enough PT that day, or lie awake going over the pros and cons of getting KAFOs over AFOs, she didn't worry about appointments, or make a list of the different medical supply companies to call trying to find the right catheters, or know the fear of the surgical family waiting room... BUT, that person didn't know how much she could love another person. Didn't know what it was like to cry tears of joy over her baby sitting up by himself for the first time, or rolling over. She didn't know what it would sound like the first time her son would say "mama" the or what it would feel like the first time he would give her a hug. She had no idea how she could just look at his face and know exactly what he needed. I never knew this kind of love before and I am SO GLAD that I will never be that person again. The person who took things for granted...took life for granted. As hard and as sad as that day was...my life has changed in the best way, I have become the person that I was meant to be...this little guy's mama...

Friday, September 17, 2010

MRI results

GOOD NEWS!!! Today, we had our appointment with Grey's neurosurgeon and his MRI hasn't changed from last year! His doctor explained that the changes in his bladder are most likely due to the bladder maturing and changing. His tethered cord, syrinx, and arnold chiari malformation haven't changed at all!! He was pleased with the progress that Grey is making and we don't need to go back until our next scheduled clinic appointment which is in May!!! God is SO Good!!

Our Little Rockstar