When Life Gives You Lemons

It's such an overused phrase to me..."When life gives you lemons, make lemonade!" However, I feel as though it is very fitting for this post! I promised I would be better about posting. I also said there would be more to come about the big things going on in our lives, so here we go!!

A couple of months ago I received a call from a good friend asking if it was ok that he gave my name and contact info to someone looking for a special needs child. Of course I told him it was absolutely ok, as we are very open with B. I get another call shortly after from a very special little girl's mom. She said her daughter wanted to start a fundraiser to help pay for medical bills for children in need.

Abby's Idea was formed shortly after our conversation. The initial fundraisers were lemonade stands. These seem to be a huge hit in during the summers in the south!!!   So far, nearly $700 has been raised just for Braylon!!!  Shortly after the first lemonade stand, we brainstormed with a great local artist to come up with a t shirt design! Hopefully these will be available soon...they are going to be great!!

What an amazing little girl Abby is to want to do something like this for others!!  Please check out her Facebook page "Abby's Idea" to read more about it!

Coming soon...our experience with Horse Therapy!!!

Thank you all again for following us on this journey!

The Fast Track to Greatness

Well, it seems as though I have let our hectic lives get the best of me when it comes to updating our blog!!  I felt compelled to start sharing our journey over a year ago and realized it has been way too long since I have followed through!!

At this point I am not sure where to even begin to catch everyone up...most of you follow on on Facebook, so you have seen the tremendous progress he has made.  For those who do not, here is a glimpse of what has been going on...

Braylon turned 2 last October.  I think at that point he decided, "I think it is time to start showing everyone what I can accomplish."  Since that turning point, he has made great strides!!  If you would have asked me a year ago what the future looked like for him, I would have said I am unsure...yes positive, but still unsure.  If you ask me now, I would say that he will achieve greatness (just in his own time).

Around Christmas last year he started sitting up on his own.  This opened a whole new world of exploration for him.  He was very wobbly at first, but in time it became a constant.  This child that had spent the first 2 years of his life horizontal was now seeing everything from a different prospective!!! 

It seems like we blew through the next few months and before we knew it he was on to something else new...standing!!!!  I'm telling you, this little boy just took off!!!  He started pulling up on things that were a couple of feet off the floor, but couldn't quite figure out how to get back down.  We went through a few falls, even with much supervision and cushions!!  Just like that, we no longer needed those things.  He can stand AND get back down completely on his own!!!

We also have invested in our first walker.  He has to work very hard to use that...we kind of by-passed the walker with assistance for his trunk control and went straight to one without!!  Why hold him back if he doesn't need it right????  That's kind of where we are currently...things we thought we would need medically, we have been able to skip right over.  How awesome is that?!?!?

I think that kind of brings everyone up to date.  I will try better to post more often; it just seems so hard to squeeze in with all the other activities (More on that to come)!!

Steps in the Right Direction

I said I was going to try to be better about keeping up with my blogging, but we stay super busy!  I have started back to my full work load, which it makes it harder!

Braylon started "school" last month! This is something we had prayed about and it finally worked out. It has been amazing so far. We are seeing more improvements all the time!  They work with him daily through different therapies, and we are still getting our 4-5 sessions per week with our awesome therapy team privately.

He loves going to school and he's already made some new buddies, which most of you know comes natural to him.  They even come pick him up and bring him home every day.  We are so thankful this has all fallen in place for us!

Even more exciting news...we are taking steps!!! Not without max assistance, but they are steps and with correct pattern!!  Every small accomplishment gives me that much more hope that one day we will get there!!!

When in all reality I stop and think about Braylon's diagnosis and consider he is almost completely missing his cerebellum, which "controls" most of the things he has learned
to do, I realize even more what an awesome God we serve!!!

Making Up For Lost Time

I am not even sure where to begin...it has been so long since my last post, I feel like I could be here for hours trying to catch everyone up!  It has been a crazy busy summer to say the least. As August is coming to an end I am reminded of where we were just one short year ago.

To have a 10 month old child go from "just a little behind" to a major diagnosis was life changing. At that point he was still a baby and it was still pretty easy to take care of him. Little did I know as time moved on how much harder it would become. I have learned so much this past year not only about Braylon and his diagnosis, but about myself as well.

I have connected with people all over the world and we share our stories and ask questions about our children. It has been a lifesaver at times...just when I think we are going through something weird or challenging, I hop online and sure enough it's normal for most "Dandy Kids." It's also very reassuring at times to know others are dealing with exactly what you are.

We have had many trials to face, but we seem to overcome each one. Many prayers have been answered and many blessings have fallen in our laps. I think most importantly this has all brought me closer to God. There have been several times that I just had to walk away and let Him handle things...which isn't my strongest suit being that I'm such a "planner" and want everything exactly in its place.

I so appreciate everyone's support and love for Braylon! We could not have made it through without each and every one of you!!! And just for those following him, here's what we've accomplished this year (as much as I can remember):

rolling over
drinking from a sippy cup
finger feeding
sitting briefly
pull to stand
standing with assistance
army crawling (everywhere!)
brushing hair
throwing
wiping/cleaning
points out nose,eyes,teeth
clapping
patty cake
peek a boo
words- hi,bye,dada,yea,clap,jump,go,catch,ma (his versions of each)


I will try to be better about posting more updates! Just trying to get everyone back up to speed!!!

Our Celebrity In The Making

Well this one might be short and sweet, but I felt I needed to share some positive things!!  We just finished up with the Cerebral Palsy telethon for Northeast Louisiana and it was a big success.  I have to thank my awesome friends and family for helping out.  The telethon raised more money this year than they have in a long time!!  I think they are already planning on asking us back next year since we weren't afraid to ask for donations!

As some of you have seen, the picture of Braylon in the yellow chair was the one chosen for all the advertisement and the ENORMOUS poster...which we got to keep!  (Not sure where to put that without making it look like a shrine of our child)  I am pretty partial, but I think that face played a huge role in connecting with people to make donations.  That mixed with his outgoing personality were a hit!!  The poor baby was passed around like a sack of potatoes.  Needless to say, he was worn out by the end!

We met several other families and shared stories and experiences with them.  It was very nice to talk with other people going through similar things.  I even talked with one mom that makes her own set-ups for bathing, shopping carts, etc.  I learned a lot from her!!  Braylon also met a special friend much older than him.  By the end of the first day she was giving him artwork she had made herself...this was so touching!

We are all exhausted, but so thankful for that experience!!  There are certain times I think we have it hard and I am quickly reminded it could be much worse.  There are so many forms of Cerebral Palsy and different degrees of disabilities to go along with them.  We will continue to pray for the best and strive to move forward with his development.  Thank you all for your support and encouragement!!

Big Things Happening

I can't believe a whole month has gone by since I last posted something...a lot has been going on!! The new year has started out great for us.  Although, the beginning of January we lost my sweet grandmother, it was okay because I knew she went to be with the love of her life.  She and my grandfather were so special to me...I cherish every moment I had with them and all that they taught me. It sounds a little crazy, but I feel like  I see her in Braylon.

The last few years she had suffered from dementia, which slowly impaired her brain function. With Braylon's Dandy-Walker, he too suffers from his brain not functioning properly.  However, this past month we are seeing more and more improvement.  I think he gained an extra special guardian angel to help him progress!!    My grandmother also smiled all the time.  She was as happy as can be, just like our 'lil man.  Coincidence...I will let you decide!

When I said a lot has been going on, I was not exaggerating. For starters, Braylon was fitted for a stander...for those of you scratching your head, it is exactly what you are thinking.  It is a piece of equipment that straps him in to stand upright with a tray and all!! (Did I mention it has wheels???)  I had a harder time dealing with it than he did.  He got in it and loved it, while I had to fight back a tear or two.  I didn't know how difficult it would be to see him placed in a piece of medical equipment like that.  We moved right on though; how could you not with just a glimpse of his excitement?

The following week we visited Shriner's Hospital to see what they could do to help.  It was a great experience!  We meet with a team of doctors, nurses, therapist and so on.   We were there for over 4 hours, but it was worth it.  They talked to us about everything and even helped us get some things ordered to hopefully make our lives a little easier.  They even gave us some arm and leg immobilizers for free!! They also fit Braylon for his first set of ankle braces.  We go back to pick those up next week and we are hoping they really help with his stability.

Next up we made a trip to New Orleans to meet with the geneticist.  We are trying to determine if the Dandy-Walker is genetic or just one of those fluke things.  Although the doctor said he did not feel as though it is genetic, we are still doing blood work to confirm.  We always wanted two children, but I just don't know how we could handle another one with the same medical condition.  There are a lot of days that just kick my behind! Of course on the way home we had to stop and meet Mike the Tiger at LSU.  Braylon wouldn't take his eyes off of him.

We were referred to Families Helping Families by several people.  I met with a wonderful lady whose son is disabled as well.  She was a great person to talk to.  We ended up chatting about everything that day.  It was so nice to talk to someone who knows what you are going through.  It is much needed at times.  She told me about a new program Medicaid is offering for families with a disabled child who make more than the normal income cut-off.  It is a great program that will help in addition to private insurance.  They even have sitters that will come to your house.  Please say a prayer that they approve us...it would be such a blessing!!

And now for the big news...Braylon was selected to be a poster child for Cerebral Palsy of Louisiana.  His Dandy-Walker falls under CP which made him a candidate.  We sent off the application last week and just had his "photo shoot" today.  He will be on all the advertisements for this area and will be a guest at the telethon on March 23rd and 24th.  And most of all, they will help out with some of the cost of therapy and equipment.  GOD IS GOOD!!!

We have seen such an improvement the past month with Braylon.  He is now off the bottle...that took some serious effort! He also can hold the sippy cup (when he wants to).  He sat independently for almost a minute and stood with leg immobilizers on for over a minute.  We can go to a restaurant without having to pack a bag of "stuff" to literally strap him up in a highchair.  Tummy time is now fun as long as it is his idea...he spent a good 15 minutes on his tummy one day.  What a long way we have come with that!

I can't wait to see what he has in store for us in the future.  It looks like we are adding speech therapy soon along with his PT and OT.  He already babbles quite often, so that should be interesting once he finally gets the words out.  A big shout out to our therapy team for being so supportive of Braylon and all of his developments!! You guys rock!!  Hopefully more good things to come!

Good Riddance

I cannot wait for this year to come to an end...I am determined for 2013 to be better!!  It has been one heck of a roller coaster ride to say the least.  All the ups and a lot of downs in my personal life have me exhausted; not only physically, but mentally as well!  I am overloaded with thoughts right now as I reflect back on this past year.  The majority of them still leave me scratching my head!

If what doesn't kill you makes you stronger, then I feel like Super Woman!!  It did take me a long time to get to that point.  I truly felt like there were days when I just could not possibly take any more.  There is no denying that I questioned why I was having to deal with the things I did and I still haven't gotten answers for all of them.  However, I have come to the realization that I might not ever figure it out. 

I found myself constantly searching for encouragement and anything positive I could cling to.  One day I came across a quote (on Pinterest of course) that pretty much sums it up for me.  It says, "Sometimes God lets you hit rock bottom so that you will discover that He is the rock at the bottom."  I feel like maybe I wasn't living the life I was meant to live.  Through all the troubles I faced I found myself building a stronger relationship with Him.  

In building that relationship I began to see the positive in things and tried my best to weed out the negative.  I am pretty sure it is safe to say that will be one of my New Year's resolutions.  I am determined to stay positive.  I still have the hardest time when I see other children Braylon's age and what they are accomplishing.   Although it never seems too long after that I notice something that shows me it could always be so much worse!

In staying positive, the things we work the hardest for are a lot more rewarding than those that come naturally.  So when I post a picture of Braylon sitting straighter in a high chair and finally drinking from a sippy cup, I can really be a proud Momma!!  We worked pretty dang hard to accomplish those things!! You can betcha that we are going to keep on working that hard too.  I just know 2013 is going to bring great improvements!!

With 2012 coming to an end I can certainly say, "GOOD RIDDANCE!!"  I am looking forward to what 2013 has in store for us.  For those of you following our journey and asking how things are going, Braylon's milestones are listed below.  Thank you for continuing to support us with all your positive and kind words!

He can now say several words (although not on command):  Bye-Bye, Dada, Mama, Hey

He clicks his tongue - A LOT!

He spits when he doesn't like something

He shakes his head NO

We play peek-a-boo

He is working on pincher grasp instead of whole hand

We drink out of a sippy cup - YAY!!

He rolls to whatever he wants to get in to

As far as sitting, he still cannot control his balance and has low muscle tone

We are now working on standing and building those leg muscles

He finally supported a little weight in his arms in the crawl position just recently

Hopefully more to come soon!!