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!

Christmas past, Christmas present

10 days till Christmas!!!! This year has gone by so fast and so much has happened. Christmas 2008 my family and I traveled to Pennsylvania. We spent time with the family, went snow-tubing and of course shopping. Life was normal and wonderful. We spent Christmas Eve thanking God for the birth of Jesus and thanking God for our family we were surrounded by. Christmas day was spent at gram's house with family again and presents (of course). Braylon was 8 months old and seeing his first Christmas. At this time, we had no clue that Braylon had a stroke. We didn't know the amount of damage that occurred to his brain. And we couldn't even recognize the fighter we had on our hands!
I remember it clearly.... My two older boys slowly walked down the stairs to see what Santa had left them. Perhaps they even surprised at how much there was. Braylon is being passed from lap to lap. He was unable to sit up, so he was held a lot. Tearing at the gift wrap was more fun than anything else for Braylon. I can remember having conversations about Braylon and how "normal" he seems. (At this time we had a neurology appointment, but hadn't gone yet.) He was 8... almost 9 months old and he couldn't sit on his own or hold a bottle. Really he barely played with anything. I don't think that was normal.
This past year I've learned my baby had a stroke and suffered major damage. But more importantly I learned that with God even babies can overcome any obstacle. When I think back on it, I just can't believe all God has brought us through. The amount of change I've seen in Braylon in less than a year is nothing short of a miracle.
Christmas is always full of memories. My memories will always be landmarks on Braylon's road map to his destiny. This year at Christmas we will be in Texas with family. Braylon will be playing outside with his brothers and cousins. He will be free from all laps (although I'm sure when he's ready there will always be one available). I'm sure tearing the wrapping paper will still be fun for him. B will be enjoying the holidays on a completely different level and I'm so happy for him.

Happy Holidays everyone! Happy Birthday Jesus!!