Hydrocephalus awareness walk

Getting pumped up for the Hydro Angels over Texas Hydrocephalus walk.  Just sent out an e-mail today to get donations for Maddox to reach his goal of $500.00 and I already have $225.00.  We are so blessed!  If you would like to join us, please feel free.  Here is the information below. 

Please Help Support Maddox on his 2nd Hydro Angels over Texas Hydrocephalus Awareness Walk September 24, 2011 Hosted at: Oyster Creek Park Sugar Land, Texas Check-in begins at 8:30a & Opening Ceremony is at 9:30a & there is something to do from 9:00a till 2:00p Join Hydro Angels Over Texas as we raise funds while we Boot Scoot Across Texas for Hydrocephalus Awareness. You do not have to wear “boots” however; this is our THEME for 2011! So go ahead and wear your cowboy boots, go-go-boots, rubber boots, crazy boots, bling-bling boots… you get the point! We would love to have you & your team SUPPORT the cause. Shine up those boots and come Boot Scoot’n with us! Just so you know, it doesn’t matter what you wear just as long as you are there! Sneakers or flip - flops welcome. Each person attending, child or adult, who has Hydrocephalus will be recognized at opening ceremony and will receive an event souvenir t-shirt. *Must pre-register with size. Hydro Angels Over Texas is a nonprofit 501(C)(3)Organization. We support infants to elderly living with the complex issues of hydrocephalus; on a daily basis, and in the future with research. Our Vision: "To create a world where hydrocephalus is at the forefront of public attention and a cure is imminent."

Last year our team was able to raise $400 for the walk, please help Maddox reach his goal of $500 this year. If you are able to, it would be wonderful to have everyone there to walk. I know it will be hot, but we would love to see everyone. Thank you again for all the support you give us throughout the year. Without wonderful family and friends like you, it wouldn’t be possible.

Please follow the link below to our page.

http://www.active.com/donate/txbootscoothouston/maddoxray0714

Happy Birthday my little Champ!!!!!

Two years ago at 8:02am you came into the world and were whisked away from me for over 24 hours.  The news we got over the next 17 days was the worst news ever.  But we walked away knowing that God did not bring you here for such horrible things to be true, and you have proven them wrong and continue to do so.  You amaze everyone who meets you and your change every ones life for the better.  We all love you Maddox.  And are super proud to be the ones you and God picked to be your family. HAPPY BIRTHDAY!

Great news hard to swallow news

Went to the eye Dr. last Tuesday and the Dr. was able to determine that Maddox is extremely near sided.  The only thing we ever got from the other Dr. is until he can tell us what he can see we will never know if he can see.  Kind of a hard thing to wait for when you dealing with a severely delayed child.  Makes me sad to know if I would have gotten a second opinion sooner maybe he would be just a little further along in his development, but now that we are on the right path, I can only keep on hoping for the best. He will be getting glasses sometime this week and also I will be administering an eye drop in his eye once a week to keep them dilated so that he can bring in more light to see as much as possible.

That was last week, the week before brought us some other news.  We met with a physical medical and rehabilitation Dr. for the first time on Monday before that.  She was a fantastic Dr. Really seemed to know her stuff and for the most part gave us some pretty optimistic news, until the end.  When she sprung on me that she wanted to add some more diagnosis to Maddox's condition.  She has now added cerebral palsy and quadriplegic.   That one was hard to hear.  The cerebral palsy we always kinda knew would come since he has so much of his brain missing, but the quadriplegic very hard to hear.  Here you have a very actively kicking child.  Moving, squirming, etc... but since so much of his brain is missing and damaged, the quadrant of his brain that controls his motor skills is the part that is damaged, and he is very weak in all for quadrants.  That is the reason for the new diagnosis. 

Oh well, we will keep rolling with the punches.  He is worth every hit!

It's been a while

It's been a while since I have been on and added anything to the blog.  I will try and be more current with the news.  We did our Hydro Angels over Texas walk in October in New Braunfels.  It was awesome.  Maddox slept through the whole thing, but it was great to see all the people there that are dealing with the same thing we are.  I met Sheri (founder of Hydro Angels over Texas).  She is an awesome person and has helped me become an Hydro Angel and start a NW Houston Hydrocephalus support group.  I have my first meeting April 7.  I was the only attendee, but I know one day, I will have at least one more person.  Thanksgiving came, followed by Christmas.  And from December 26th, someone in our house has been sick with one thing or the the other.  We had the flu, stomach virus, sinus infections, virus's, more sinus infections and more random virus's and it still hasn't ended.  It is now April 8th.  And anytime Maddox gets sick, it takes him a lot longer to get over it.  If it takes us 3-5 days, it takes him 3-5 weeks.  So needless to say, he has been sick a lot lately. 

Since January we have been lucky enough to get a physical therapist and speech therapist started about a week ago.  Maddox has made great strides (for Maddox) since Ms. Wendy has started coming.  He is now holding his head up, unless he's tired or just had an episode (epileptic spasm).  He is starting to bear weight on his legs and now has a stander.  He also got AFO's for his feet and bowed legs.  And we are now waiting on an awesome stroller for him. 

We just had our shunt checked in March and everything looked great.  A whole lot more parts of his brain has filled in and even a little more fluid has drained out.  So we seem to be heading in the right direction. 

Below are some pictures of our last months.  Now we have some teethers : )

teeth smilers

Maddox in his stander 

 go Texan day photo shoot

 Devon being cool

 Bryce is super cool tweener

 Maddox at the beach

 beach smilers

 Christmas 2010