Welcome

Landen has been (and is) such a priceless and eternal blessing to our family since his arrival. As you can tell, he's absolutely adorable and happy. We simply can't get enough of him!
As of August of 2013 we added another addition to our family, Brigit Nicole. She is missing part of her 3rd chromosome. We are still learning every day new things about her disability. We have a total of 4 kids and couldn't be happier!



The purpose of our site is to reach out to others who have Angels with Spina Bifida (or other special needs) for a supportive bond.

Please feel free to contact us @ ronandtosh@comporium.net



Tuesday, May 22, 2012

This too shall pass...

In the past 2 years of Landen's life he has had many surgeries. I believe 7 surgeries to be exact. He has bounced right back from all of them. He typically keeps a cold, runny nose, etc. He has had bladder infections and continues to suffer from aspirating his liquids. He has a feeding tube that was placed about 7 months ago. Needless to say, he has had many hurdles to jump over in just 2 short years. I have expected lots of these things...these are things that just "go with living with Spina Bifida." I always worry when my baby gets sick and I worry when he throws up several days in a row b/c the possibility of shunt malfunction, I worry when he falls and gets a bump on his head(typically from pulling himself up on things he shouldn't), I worry when his temp is over 102 and thoughts of another bladder infection crosses my mind...BUT, I know that everything will be just fine and he will bounce right back like he ALWAYS has. I've always known that he would need a wheelchair, walker, or some sort of walking aid. These are things that I have expected with Spina Bifida.

Last Friday, we went to Greenville to see our wonderful speech pathologist for a swallow study. Landen is STILL aspirating honey thickened liquids. He needs vital stim therapy to help those weak muscles, otherwise he will DEPEND on the feeding tube. He needs VS therapy 3 times a week but no one in our surrounding area, Charlotte NC accepts  Teffra/SC Medicaid. There is only 1 clinic that even offers it in Charlotte. We can't financially afford to travel to Greenville 3 times a week for possibly 1+ years. SO, our next step is another MRI next Thursday then an appt with our Neurosurgeon, Dr Troup to discuss if decompression surgery will help him at all. THIS I WORRY ABOUT! I keep telling myself that "this too shall pass" and he will bounce right back like always. I have expected lots of things with Landen but I most definitely did not expect the fact that he might ALWAYS require a feeding tube. :(

Now...enough depressing news.

                            TERRIBLE TWO'S

Landen is in his terrible two's! I never went through them with Lexi or Zach. I think it was more like terrible 3's with them. Landen is VERY and I mean VERY independent and likes to do things his way! It's his way or  the highway! If he doesn't get his way, he gets mad and throws things or tries to slap at your face.(not so cute)  I have always taken pride in my house "usually" being clean and neat. Now, it's just a struggle to even find the floor of Landen's playroom. He likes to throw all of his toys out and not play with ANY of them. I think he just likes to see me pick them up so he can do it again and again and again...you get the point.

            ~MY GUIDE FOR SURVIVING TODDLERHOOD~

1.Give up the delusional dream that you may in fact at some point get your house clean. It's NOT going to happen.

2.Put everything away in your home that may be of value. This is the first thing that they go for...it's the most inticing to them. Believe me, it WILL get broken.

3.Naps are NOT just created for kids, they are for moms too! Yeah right, I'm laughing at myself as I write this. It sounds oooh soooo goood though. :) But, since us moms never get time alone, take time to "ALLOW" yourself to eat, read a magazine, surf the web...it's "you" time, so enjoy the little bit of break you can!

4.Never underestimate the power of icecream. Yep, that's right! Icecream makes it all better when I am stresed. peanut butter chocolate chunk...yummmm!!

5.Non-judgemental BFF with a toddler. She can relate. It is imperative to  be able to complain, have a meltdown, cry discuss the challenges with someone who can relate!

6. Have very very very low expectations of what you will be able to accomplish in the hrs that your sweet toddler is awake. This way, when by chance, you actually get some much needed things done, you will feel like your day was a success! :)

Toddler hood....This too shall pass!!

Enjoy your toddler while you can...they grow up so fast! :) 

Wednesday, May 2, 2012

Landen's Walk N Rollers

On Saturday, May 5th, our team, Landen's Walk n' Rollers, is participating in a walk to benefit the Spina Bifida Association and All proceeds are used for programs and services for people living with Spina Bifida.

Spina Bifida is the most common permanently disabling birth defect in the US. An average of 8 babies every day are born with Spina Bifida or similar birth defect of the brain and spine. The majority of these babies, like Landen, experience major back surgery within the first few hours of birth.

When we started Landen's team a few weeks ago, our goal was to raise $300.  We didn't have enough time to raise alot of money so we didn't want to make our goal out of our range. We are VERY pleased to say that within 2 weeks of started our team, we have raised over $1200. We are soooo very excited to turn in all that money this Saturday!

Here is a picture of the shirts we designed for Landen's Walk n- Rollers!