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!

Braylon's EEG

About two weeks ago I mentioned to Braylon's physical therapist that B's eyes were twitching. She told me to report it to the neuro. When I did call the neuro, he scheduled and emergency EEG for Braylon. An EEG is a test conducted in order to detect seizures. During the test Braylon had to be sleep deprived, which was very difficult on all of us. The test sets up a series of events that would typically cause a seizure in a person prone to seizures... for example, a strobe light flashing in front of his eyes. Well the good news is, Braylon never had a seizure during the test. But the test did show abnormal brain waves on the right side of his brain. The neuro prescribed seizure medication for Braylon as a preventative measure, but neither my husband nor I feel comfortable giving it to Braylon.

Braylon has never had a seizure to our knowledge. We know that the chances of him having one are higher than a normal because of the stroke, but he still hasn't had one. After researching the meds and there side effects (one being causing seizures), we feel that at this time we shouldn't give the meds to Braylon. I know some people may think we're crazy for not listening to the doctor, but my P.O.V may be different than theirs. In Braylon's case once he started the meds he would have to stay on them for the rest of his life. With a normal brain meds can control seizures and eventually be weaned off. With a brain of a stroke victim, getting off medicine could cause an even worse debilitating seizure. Plus, Braylon isn't even two yet. What would be the long term effects on the rest of his body (i.e. liver, spleen, blood, heart) if he was to be on this medication for 20+ years.?? Sometimes I think medicine can do more harm than good. So for now we are going to continue with our prayers and expectations of healing. We're believing in God and preparing our fields for good. One thing I've learned is our decisions may not always be easy, but when we have faith in God we understand why we have to make them.

New York Times

Finding articles about pediatric stroke victims always bring tears to my eyes. But at the same time, it helps me feel not so alone. I found this article in the New York Times about a 7 year old who had a stroke. Some of the things the doctors told his family I never heard of or considered. It just makes me realize how much more research needs to be done on pediatric stroke causes and care. I hope you enjoy it as much as me!

http://www.nytimes.com/2010/01/19/health/19stroke.html?pagewanted=1&ref=health

And a "triker" is born!

Today my husband and I had the pleasure of attending a luncheon with AMBUCS in Mesquite. We were invited to their weekly meeting because they wanted to present Braylon with a very special trike. About 6 weeks ago B's physical therapist presented me with the idea of getting Braylon a tricycle to help with his therapy. At the time I had no way of knowing how special that idea would be. The trike has a chain that runs vertically instead of horizontal like on most bikes. With the chain running vertical it allows the user to pedal with both their feet and hands. What these mean for Braylon is when riding his new trike he can pedal with his feet and right arm while stretching out his left arm. Normally the only time B's arm gets a good stretch in is during therapy or while he's on our laps and we're stretching his arm straight. And believe me that's not very fun for B! Now with the help of the bike our daily walks will be therapy and riding bikes with his brothers will be therapy.... so much more fun!! I can't wait to post video of B on his new trike!

Although we didn't stay long at the luncheon, I was reminded of so much. AMBUCS is a group of business men and women taking time to help others out. The organization first started out giving scholarships in physical therapy. Some years into it they began to see their passion to help turn into someone else's passion to create. See Braylon's very special trike was designed by a physical therapist who once received a scholarship thru AMBUCS. With the help of some John Deer mechanics she was able envision and develop a trike that has now helped hundreds of children in their challenging journey. It's funny how in all situations God puts a feeling, a desire deep inside of you and once you begin to pursue it, He can make it so much bigger than you ever expected.

The Story... told by the pictures

Photos of Braylon taken at 3 & 4 months old.

(above)

Photos taken at 1 -2 months old.

(below)

Going thru an old computer my husband found a bunch of photos from when Braylon was first born. He walked into our room at 12:45 a.m. wondering if I was still awake. Barely, but enough to listen to what he had to say. He began to tell me how he came across photos of Braylon and after looking at them he began noticing something we haven't seen in a long time. In all of the pictures Braylon's left arm and hand were stretch out, looking very similar to his right hand. Pictures of B putting weight on his left arm at only a few weeks old... a task he can no longer do at 21 months old. My husband continued telling me how he was sick to his stomach with the thought that Braylon had a chance to live a normal life. A life without all the appointments with therapists. A life where you buy shoes and clothes that fit you, not your AFO brace and splint.

My mind wonders on occasion... trying to figure out what really happened to Braylon and if I could have stopped it or at the very least made it less severe. I still have no definate answer to what caused B's stroke. Doctors have only given us his diagnosis, never a cause. Thru my own research I have come to assume Braylon's stroke may have been caused by a vaccine or the amount of vaccines given at one time. Looking back at the pictures I can see the ease B had in both hands and legs. I can see B looking towards the left (which he rarely does now b/c of his vision loss). All of these things occur until B's 3 month old pictures. Shortly after his 2 months vaccines, the pictures tell a different story....a crooked smile and a clinched fist.

Sadness feels my heart to think Braylon had the chance of a "normal" life fillled timely milestones. But oh, God is so Good! My faith in God and the power thats from within Him would never be so needed without that sadness. Without the emotion felt from Braylon's circumstances, I could have gone thru life being "normal" and teaching "normal" thoughts. I know this... for every negative situation there is a positive one of equal (or greater) value. So thru that sadness, I have found the greatest joy. The joy that Jesus Christ is still my savior, that God is still a miracle working God and that if I just have faith God will always be there.

pics from the holidays

Gift of the holidays

This holiday season was a little more reserved this year. Staying in Texas this year for the holidays, we were able to spend a lot more time together.... just the 5 of us. We still had a wonderful time with our extended family, but it was nice to spend quality time with those closest to my heart.

I always wish for a white Christmas and this year I got one!!! Almost all day Christmas eve the snow was falling. But unfortunately, the day before it 73 degrees out. The ground was so warm I didn't think the snow would ever stick, but it DID!!! At 9:00 at night we all threw winter coats and shoes on to rush outside and play in it while it lasted. I thank God for that snow. My boys smiles were so big and even Braylon couldn't help but laugh as the snow fell on his face. This was B's first real experience with snow. As I watched him trying to run in the snow like his big bros, I remembered my extremely high goals I had for him just 6 months ago. Goals that included Braylon running in the back yard with his brothers for Christmas. WoW! What a wonderful gift I received. Just like a white Christmas in Texas, when you least expect it God can make it happen.

It is now 2010. A new year, a new decade and I'm sure new battles to fight and races to win. But as I look back to at the last decade I smile. Like the commercial... It wasn't always perfect, but it had some perfect moments. And in those times God was perfectly molding me. Creating in me faith, strength, empathy and perseverance. What's to come? There's no telling, but I will continue to grow. And for Braylon and my other boys, I'm sure there will be more miracles to report and mountains to overcome.

Have a Blessed New Year!