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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!

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.