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!