Spina Bifida Awareness

Spina Bifida Awareness!
There are 3 main types of SB...Occulta, Meningocele, and Myelomeningocele. Occulta is the most mild form and people can go their entire lives not knowing they even have it...often times they don't become symptomatic until adulthood. Meningocele is the most rare. There is an opening, but the nerves are not involved. Myelomeningocele (pronounced like Milo My Ninja Seal!) is the most common...and the most severe form. This is what Cole has. As you can see from the picture, his nerves were protruding through the opening in his spine. This is why mobility is affected. His nerves were exposed to the amniotic fluid. Cole had his lesion closed while in-utero at 25 weeks and 6 days. If he had not had that done, his lesion would have been closed within hours or a day after birth. Both surgeries are a repair...not a cure. The damage that occurred to the nerves is done and cannot be repaired. Let me know if you gave any questions about Spina Bifida! If I don't know the answer I have friends that most likely do.

Spina Bifida Clinic

Cole had Clinic today. We were able to first meet with the nutritionist. She said to keep trying to feed Cole his veggies and to add some meat to them to get some protein. She said that he looked good on the chart for growing, so we should keep up the good work. Then the resident neurosurgeon came in and he just asked a lot of questions. Then the physical therapist came in to talk about how Cole was doing with reaching his milestones. He is doing well in all areas minus his lower half. Which she said was to be expected. So we will keep moving his legs for him. Then the neurosurgeon came in with three other residents and the Nurse that is over the spina bifida clinic. They were pleased that Cole's head has not grown in the last 2 weeks. They asked us a lot of questions. Same as when the resident came in before. Does he have a hard time looking up, does he throw up, does he sleep well, or maybe too much, does he cry and you can't calm him down? Which we haven't seen any of those things so they said to plan on coming back in two weeks to our appointment with the other neurosurgeon that we did the MRI with.  We asked if we could have the Ortho-surgeon vome in and look at Cole's legs and feet, just to make sure they were doing well. He doesn't move them as much as he did when he was first born. Not sure if it's because they are chubby and heavy or what? He gave a great report. He looked at his feet, legs and back. He said that he thought they all looked really good. He didn't really think that we would ever be seeing him in the future. Kind of excited about that! I was nerve with them not moving a lot that we might run into problems. So we will keep moving them for him until he gets old enough for me to tell him to move them, I guess. All in all it was a good day! The bonus was that Troy Ogden was at the clinic today volunteering. He is a 27 year old man that has SB. He come to the clinic whenever he can to talk with parents and help them understand what it's like to be a kid with SB. He was so nice and helpful. It's always great to learn from others what works and doesn't work. He said that he played baseball up to the 8th grade. The team let him stay in the dug out even when he wasn't playing with them. He said to be sure to teach Cole how to take care of himself. He had gone on a mission for The Church of Jesus Christ of Latter-day Saints. He said that is was amazing to see the difference in the three other SB boys that he served with. Not because of their physical differences. But how their parents had raised them to care for themselves. It was so good to chat with him and to hear his advice in helping us help Cole.

Spina Bifida Shake it off!

Here is a cute video of kids with Spina Bifida! Can't wait until Cole can show us his dance moves!
https://www.youtube.com/watch?v=LLUTCix-gog

Here is what Spina Bifida looks like!

Here is a cute video that one of the other moms put together of all the cute kids.
 https://www.facebook.com/video.php?v=10204989680721070

Oct. fun!

Now that are not stressing over the MRI and other health things, we are able to enjoy life a little easier.

We were so blessed to share the special day of my Aunt Cora being sealed to her husband. Taylor watched Cole and Gabe while we were in the Temple. Love these two!

Cole has been practicing eating baby food. Carrots he was okay with, but he thinks sweet potatoes are yummy!

Cole doesn't really like to be on his tummy. But he has been working really hard and putting in the time.

Cole is so cute!

Buddies watching the BYU football game. Cole is always willing to watch the game with him, cause he gets the best sit in the house.

Oct. is Spina Bifida Awareness Month

 

This month is Spina Bifida Awareness month.

 



John Mellencamp has SB and his parents didn't even tell him. Here is a story that tells all about it.

http://www.cbsnews.com/news/john-mellencamp-meets-spina-bifida-doctor-who-saved-his-life/