May is pediatric stroke awareness month

Hello EVERYONE!!

May is Pediatric Stroke Awareness Month and May 5 specifically is pediatric stroke day.  I know you all have heard Braylon's story and how he is constantly overcoming obstacles.  Sad to say there are thousands of other kids around the world who's story is so similar.  This past week we had 3 ER visits with Braylon... none of them related to his stroke.  Twice we were in Children's to check for meningitis and once at a local hospital because Braylon dropped a glass on his toe and cut it open and broke it.  Everything is fine with B, he's so tough, but I did notice something that caught my eye.  When Jamael and I were at our local hospital with B each bed had a stroke flyer next to it.  The poster stated if you have problems speaking, raising one arm or have a drooping face to let hospital personel know immediately.  It also stated that if you are having a stroke its crucial that you receive immediate care.  Although I've seen those flyers before, somehow they never made it in to children's hospital.  I did not see one flyer in the hospital at all.  Crazy, huh?  Even crazier is that when Braylon's pediatrician suspected a stroke, he never told us or told us to seek immediate medical attention.  Instead we waited 4 months to get into the neurologist to get a diagnosis.  This is why Pediatric Stroke Awareness is so important.  If grandma or grandpa had a stroke is would be devastating, but chances are they would get the care and support needed to recover immediately.  I honestly don't think hospitals or doctors think that pediatric stroke is less significant, I just think people are not aware of how often this occurs and the best plan to handle it. 

I am asking that all of you wear purple saturday, May5 for pediatric stroke awareness and spread the word about Braylon.  He has come so far, but we have a long battle ahead of us and I'm afraid that it seems like his battles are getting more difficult for all of us.  It's the saying... If its not one thing, its the other.  Some examples are being so excited that he can walk and run, but then realizing he's a flight risk and will run away from you, the house, anywhere.  Or  "Yay, his vocabulary is growing leaps and bounds!" but he now tells you "NO" for everything and calls the neighbor "PEEPEE head".  Lol, that boy!  Please help us spread the word by doing the following 3 things...

1. Watch Braylon in this video montage for pediatric stroke awareness.  Please watch all the way thru for the important facts/stories.  http://www.youtube.com/watch?v=B31CKWa5j80

2. Donate to my firstgiving page.  Funds go directly to CHASA, a nonprofit that offers scholarships, orthopedics, summer camp etc. for stroke survivors.  https://www.firstgiving.com/account/fundraising/FRPPage.asp?id=1153670&did=1

3. Forward this email to all your friends and family.  They can also read about Braylon on http://www.ourstrokeofluck.blogspot.com/

1 Corinthians 15:10   
But by the grace of God I am what I am, and his grace to me was not without effect.  No, I worked harder than all of them- yet not I, but the grace of God that was with me.

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Helloooo, I've missed you!

I missed writing to you so much, but still it has been difficult to get on here. Being a mom in general means your time is no longer your own and everybody else's needs come before yours. Being a mom of a special needs child is the same except there are no breaks! I'm trying to take time for myself, because lately I've been going a little crazy looking after everyone but me. This is my beginning.... Writing down my experiences, both good and bad, so that I can digest and reflect.

Braylon is doing amazingly well (although today he's very aggressive and whiny) and his speech has moved leaps and bounds! We have yet to here sentences, but there are plenty of words. Some of the most popular words we hear are: mommy (of course), daddy, drink, eat, ball, car, beep, bubba and love you. That alone should let you know what B's interests are. LOL! He's still drooling, but we are doing exercises to help with that. Because he's able to communicate more his aggression has subsided some. Thank the Lord, because his aggression is usually taken out on me with something very hard being thrown at my face. :( Of course he's yelling and hitting Torian as we speak. Lord help me!

Physically Braylon is doing really well also. He's running , jumping on his trampoline and dribbling a basketball. He's a fast little dude too! If we don't watch out, he'll run off and disappear in a flash. You should see him at his big brother's basketball practice trying to get in line with all the other boys to do suicide drills! Braylon is spending 2 hours at Baylor Our Children's House on Mondays and Wednesdays. After physical, occupational and speech therapy he's warn out and ready for fun. Luckily, the weather is nice so we can enjoy a walk or trip to the park. I've been looking in to horse therapy for Braylon and found one close to home... just gotta see when it can fit into the schedule.

Braylon will have a very busy April coming up. April 10th my baby will be 3 years old!!! I can't believe it! And on that day he will begin attending school in Garland ISD in a PPCD class. I'm really excited about that. He's wide open to learning right now and I think it's going to be awesome to see his progress! Plus, a little break for me will be well needed/deserved. That goes back to me doing something for me. Everyone keeps asking what I'm going to do when B does go to school. Seriously?! I have a list of things I've been waiting to do! Braylon will also be having surgery on both eyes April 29 to help correct his strabismus. If it is not corrected he could be completely blind in both eyes.

So glad I was able to write you... I feel much better! Hope to bring you more news soon!

God Bless!

Putting in Work

It has been awhile since I've posted anything on my blog. It's not because I stopped thinking of those of you who read or that I've ran out of words to say. My thoughts very rarely get away from Braylon and what needs to be done or who needs to hear our story. It's just that I have been so busy taking care of business with Braylon that my time is not so plenty. As a matter of fact, right now Braylon is crying in his room because he doesn't want to nap.... but guess what buddy, it's nap time!
When my family and I first started this journey with Braylon back in January of 2009, we didn't think the struggles would be so overwhelming. My husband, the most positive of us, probably thought that most things would continue along normally except for a few more extra appointments for Braylon. Boy were we ALL wrong! The older Braylon gets the more we see his disability. Don't read to much into that.... he's not getting worse, but it definitely is showing itself more and more. This past weekend a bunch of us went boating on the lake. One couple there has a son born one day before Braylon, but their stories were so much different than ours. As she called to check on her baby boy, he responded with, "Mommy, I got wet. Mommy, I love you. Have fun, mommy." And although, I know that made her day, I couldn't help feeling sad for myself and my baby boy who can't even say momma.
It seems like every where we go I see an adult that walks with a limp and who's hand is close to there chest and I wonder if their story is similar to ours. I wonder if Braylon will be like that one day. In my heart I know that B's determination will take him so much further than I can imagine. Braylon is so smart, but still developmentally so far behind that it makes everyday activities a challenge and somewhat frustrating. May faith in God is never ceasing and I believe fully in his plan. That's why even with all of the obstacles we face, I continue to praise him for the ones we've overcome. Situations can always be worse. Braylon is running all the time. He has the best laugh and always smiles for a camera. He is using about 5 signs to communicate with us and is getting to the age where he loves to hang out with his older brothers.

Continue to pray for all of our strength. Pray that the good Lord blesses Braylon with words of power... words that move people. Praise God for his influence in our lives and the miracles we see everyday. God bless!

"From the lips of children and infants you have ordained praise because of your enemies, to silence the foe and the avenger." Psalm 8:2 NIV

Tears have flooded my eyes on so many occasions because of Braylon... his struggles, his triumphs and my own pain. The older he gets the harder the task at hand is and some days I don't know how I get thru. BUT God knows just when to swoop down and show me His strength as well as his compassion. Yesterday my family went out to eat like we normally do on Tuesdays. Only this Tuesday was extra special and it wasn't just because kids eat free. As soon as our food came, Jamael handed Braylon a french fry to eat and when Braylon grabbed it, he threw it down on the table and said, "HOT"!! He began to blow on the french fry to cool it off. Jamael and I looked at each other realizing that that was Braylon's first recognizable word!!! We knew what he said and he knew what he meant! God is so good! His first word may not have been mama or dada or even bubu, but he said it and I am so thankful! I'm sure more words will come when Braylon is ready... I'm even sure there will many days will I'll say "Can you just be quiet for a minute, B?" LOL! But boy, I can't wait for it. Braylon lost the area of his brain that controls his speech. It is completely gone... empty, just fluid, but yet we are so wonderfully and fearfully made that he is beginning to use sounds to make words and understand meanings. Imagine what we could do having our entire brain working if only we had the faith and desire of Braylon!! Wow!

This Saturday, May 1, is Pediatric Stroke Awareness. Please take a moment to say a prayer for Braylon. He has come so far, but still has a very long journey ahead. Consider making a donation to CHASA in Braylon's name (the link is below). Childhood strokes occur just as often as childhood cancer and brain tumors, but very little is known about it. Plus recovery from a stroke is a life-long issue for many, including Braylon, because of the lack of knowledge to correctly diagnose this. A child would be diagnosed with a stroke quicker from an adult doctor than a pediatric doctor, because even the doctors don't have the neccessary info about Pediatric Strokes. Please consider helping a charity that can change the lives of many.

www.firstgiving.com/braylonharris

Stacy's Vision

Today I came across an article that let me hear Braylon's voice for the first time... not literally, but into his world for sure. The article is about an adult woman's journey back to vision after her stroke. Just like Braylon, her visual field was cut in half on both eyes. She too could not see anything to the left. I can still only imagine how that much of a vision loss would affect my daily life, but she allowed me to understand a little better. Read the article as if Braylon was speaking to you. Try to understand how difficult that would make EVERYTHING. Now praise God that B still runs around with a BIG smile on his face! Soon Braylon will be receiving a visual aid teacher and I'm sure with that will come some great stories to report to you. Thanks for your continued prayers!

Stacy's Vision

msnbc.com: Paralyzed soccer player walks again

msnbc.com: Paralyzed soccer player walks again

I saw this on the today show this morning and it reminded me of Braylon. Even know the cause is different, their fight is the same.... and I noticed she wears the same type of AFO (ankle brace) as Braylon. Just a reminder of how good God is!