***12/28/10 UPDATE-Braydon had a seizure at 5 am this morning. Keep praying!!! We are believeing God to be healing him completely!!!
Christmas is so many things to so many. To some it's all about family. For others its all about gift exchange and finding that perfect present for someone special in their lives. For some it's about having a wonderful meal in the presence of all your loved ones. For most of my friends and family and for myself, it's all about the birth of our Savior. There has never been a greater gift than the one without the bow and name tag. There has never been a more silent night than the night our Saviour was born; not typically our description of our first night home with baby. There has never been a brighter light, than the one that shone on that dark night. Isn't he birth of our savior amazing? I'm so thankful for the gift of Jesus on that first Christmas. Until this year, no other gift has mattered. While fun and appreciated, the other gifts just aren't important. This year, it looks like we got a special gift. And while Santa makes things magical, GOD goes a step further....MIRACULOUS!!!
On January the 1st of 2010, Braydon had his first seizure. He has had between 1 and 10 seizures a day for 358 consecutive days. On Christmas morning, he had the longest seizure we had ever seen. It would go from being mild to intense and back to mild again. This lasted for 45 minutes. While we physically supported Braydon (to keep him from falling) as he walked around the house aimlessly and talked in incomplete sentences because he was incapable of getting a complete thought out, Jacoby and I took turns being weak and strong. One minute confused with tears in our eyes and doubt in our minds and the next minute encouraging the other through the very same feelings. Little did we know, GOD had a special gift for us that day. This would be the last seizure we would see Braydon have for the next 72 hours and hopefully forever. Braydon hasn't had a seizure since Christmas day. He has not been ONE DAY without a seizure since this all began. We pray that tomorrow is day 3. Please pray for that with us!!! Thousands of Christmases later, He is still in the gift-giving business with the most wonderful presents! It's all about the gifts He gives. Thank you Lord!
There is a song I used to sing (well I guess we still do every once in a while) with Braydon. It's called "Trust and Obey". The words were given to us through his home school curriculum in the bible study section. I made up the tune myself. Those of you who have witnessed my musical ability are laughing your butts off right now. Those of you who haven't just assume I sing and know music REALLY well. ;-) Here goes: "Trust and obey, trust and obey, for there's no other way to be happy in Jesus but to trust and obey! (repeat)"
These words have never rang more true than today. Two weeks ago I left a hospital in downtown Houston after being in the presence of one of the most sought after Epileptologist in the country, in one of the best epilepsy centers around. After days of testing, poking, prodding, etc. we left knowing little more of what we knew before and with very little hope (by medical standards) of getting past these seizures. I left their knowing that what they thought was best for my son, I just couldn't do because I had no peace about it. And believe me the looks on the faces of the medical professionals when I told them that made me feel so much better about it all. ;-) But I came home to a husband who believed with me that God just wanted us to wait on Him and fully trust Him with this for a while instead of putting all our hope in medical intervention. So this is what we did and I've never felt so good about a decision. THIS IS TRUST!
For some time now, several months anyhow, there has been an area of disobedience in my life. At this point, the details are between God and me, but when He lets me know to share it with others I will. It's something I knew God wanted changed and it was up to me to do it. For what ever reasons, I fought it...took my time doing it...did it once and then undid it. Why do we go to such greats lengths to hang on to things we know aren't right for us? Whatever they are...toxic friendships/relationships, time-wasters, habits that make us feel better (i.e. shopping, eating, gambling), resentment, unforgiveness, anger...I could go on but I won't. Why do we hang on to these things when God clearly tells us to LET THEM GO! The good news is...on Christmas Eve I let it go, fully, without regret, while asking for forgiveness and allowing God to fill that space that I knew would be there once I let it go...fill it with Him, with His love, with His word, with His work. THIS IS OBEYING!
"Trust and obey, trust and obey, for there's no other way to be happy in Jesus but to trust and obey!
The song rings true! I'm not saying these seizures happened due to not trusting or disobedience in any way. I'm not even implying that God couldn't do what he needed to do at any time due to distrust or disobedience. I believe God can perform miracles and produce healing any time He gets ready. But I also know His timing is perfect. He knows when I see Him working in our lives that I will shout it on a rooftop and I won't shut up about it. He likes that about me. He wants to make sure I see the big picture! ;-)
Please be in prayer with us that tomorrow is day 3 of no seizures. That he truly did have his very last seizure on Christmas day. Will keep you all updated. THANK YOU FOR YOUR PRAYERS!
Monday, December 27, 2010
Monday, December 20, 2010
Christmas fun...
MERRY CHRISTMAS!!!
This weekend we had so much Christmas fun...pictures with Santa, mailing a letter to Santa, and we went to Santaland in Lindale (2.5 million lights that are ONLY worth the THREE HOUR WAIT IN LINE because my kids loved them. I personally vote to NEVER go back...we made the memory once!). But these are the things I pray my kids and Jacoby and I will remember for always. Lots of fun and cute pictures!
We have a picture with Jacoby in it too but it's the one we ordered so it's not ready yet...we grabbed a few with our own camera also. Santa's helper understood my urgency to get them on my blog before next week!
Mailing a letter to Santa FIRST thing on Saturday morning...seriously before 9 am!!!
Running out to the mailbox with the letter he wrote in pajamas and cowboy boots. Who dresses this kid?
Smile at Mommy I need a good picture for my scrapbook!
Flag up! Ugh, we should have combed your hair first...
At Santaland:
Next on the agenda: "The Nativity Story" live on Monday night and North Pole of East Texas on Tuesday night!!! Whooohooo. More pics soon!
This weekend we had so much Christmas fun...pictures with Santa, mailing a letter to Santa, and we went to Santaland in Lindale (2.5 million lights that are ONLY worth the THREE HOUR WAIT IN LINE because my kids loved them. I personally vote to NEVER go back...we made the memory once!). But these are the things I pray my kids and Jacoby and I will remember for always. Lots of fun and cute pictures!
We have a picture with Jacoby in it too but it's the one we ordered so it's not ready yet...we grabbed a few with our own camera also. Santa's helper understood my urgency to get them on my blog before next week!
Mailing a letter to Santa FIRST thing on Saturday morning...seriously before 9 am!!!
Running out to the mailbox with the letter he wrote in pajamas and cowboy boots. Who dresses this kid?
Smile at Mommy I need a good picture for my scrapbook!
Flag up! Ugh, we should have combed your hair first...
At Santaland:
Next on the agenda: "The Nativity Story" live on Monday night and North Pole of East Texas on Tuesday night!!! Whooohooo. More pics soon!
Sunday, December 12, 2010
Epilepsy study reports...
Well we made it home. This was one of the most challenging and frustrating weeks of my life. I was hoping to come back with tons of encouraging news. I have tons of news. I don't know how encouraged we feel by it. As always, I am going to do my best to relay this information to you in a way you can understand what's going on with Braydon. It's a lot to take in, even more to reiterate it.
Since Braydon began having seizures on January 1, 2010. We have been seeing his neurologist at MD Anderson Cancer Center for the treatment of these seizures. Based on the EEG and MRI reports done there, we knew he was having seizures...PETIT MAL SEIZURES was his actual diagnosis (click on link to read more about these). His neurologist had suggested and we have tried with no success three different seizure medications. Two of these medications showed no improvement with moderate to severe side effects. The third medication we tried had very mild side effects and after a few months we saw a decrease in seizure activity. Thinking we had found the medicine that would work for him, we increased the dosage. With no more decrease in seizures we increased the dosage a second time. Lab results showed a toxic medication level in his body, so we were forced to cease usage of that medication as well. Thinking that medicine was responsible for the only decrease in seizures we had seen over the last 11 months, we feared the seizure activity would increase after we stopped giving him the meds. To our surprise, the seizure activity stayed the same (1-2 seizures a day). Turns out, the Depakote was not responsible for the decrease in seizures-God was!
The percentage of epilepsy patients that don't respond by the third medication is low...about 25%. Because of this, his neurologist wanted him to see an Epileptologist, Dr. Gretchen VonAllmen at Hermann Hospital in Houston. She scheduled us for an admission that would last 5 days for an epilepsy study. 24 hr. video monitoring and EEG monitoring took place for 4 days along with a MEG scan and MRI. Based on what she saw through video and EEG and what her nurses witnessed during the seizures (every time he had a seizure I had to hit an alarm and 1-4 nurses would literally run into the room and start taking notes, asking Braydon questions, and checking him out-yes even in the middle of the night :)) she gave us her diagnosis and recommendations for treatment.
The diagnosis is Atonic seizures (or drop seizures). This is a completely different diagnosis than we got from his neurologist??? (We now wonder if we should get a third opinion.) Dr. Von Allmen's recommendation for treatment is yet another medication called BanZel. This is a newer medication (only approved by the FDA 2 years ago.) I told her we would research the medication, pray about it and let her know sometime this week. We needed this time because we had no peace about the treatment she was suggesting.
So now we are left to make the decision of whether or not to give him another medication that has it's own side effects and risks. And like most seizure medications, because it is a mind and mood altering drug, he will most likely not feel like "himself" on it. That was our biggest concern and dislike with the other medications was that Braydon was not himself most of the time. He was tired, sluggish, no sparkle in his eyes, irritable, etc. That is not the Braydon we want to see every day! And we sure don't want him feeling bad every day.
I asked Dr. Von Allmen if NOT treating the seizures was an option. I mean he usually has one seizure a day and it is usually first thing in the morning. So outside of the first 20-30 minutes of his day, he seems virtually unaffected by the seizures. He carries on normally during play, schoolwork, chores, social situations, etc. So if this is not affecting his quality of life, can we just not treat it, that way he doesn't have to feel bad and deal with potentially harmful side effects from medications. Her answer was we could but she doesn't recommend it because if untreated the seizures could potentially get worse or change in nature and frequency. But by talking with her and with mom's of other epilepsy patients, I've learned that that can happen even while on medication(s).
I also asked that if we decided to try this medication and it didn't work where does that leave us. She mentioned another medication that she thought might work...Felbatol. I know and have read enough about this potentially dangerous medication that I would never even give it a try with Braydon. (Click on link and read info on the drug if interested in what I mean.) And if that didn't work her suggestion was VNS surgery. VNS (Vagus nerve stimulation) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker. The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.
While I'm not saying this is not an option at some point in the future. I think mentioning it after only 11 months of seizures that we have been told he could potentially grow out of was a little premature. And again we feel very strongly that if his quality of life is great (better than it's been in a while actually) why would we do any of these things to him. We just really feel God is telling us "no" on all of these things and to patiently wait on HIM right now.
We are leaning most towards a third opinion before we do anything. We feel like God is guiding us and leading us in the right way and feel that He may have already lead us to a doctor at an epilepsy center in Laredo, Tx. We don't know really. We are just pressing in and praying and hoping at this point. We need lots of prayer right now to make the right decisions and there is alot to think about here. Please be in prayer with our family most importantly for healing for Braydon. Medical intervention I know is sometimes necessary and we believer that God sometimes uses that to heal people and restore health, but we are a little partial to miracles because we have seen them first hand, so our prayer is that healing comes through medicine or miracle...preferably the latter. Also we need prayer as his parents to make the best possible decision for him in ALL areas but especially medically. I will keep you updated as things happen. Thank you all for your prayers and love you show our family.
Since Braydon began having seizures on January 1, 2010. We have been seeing his neurologist at MD Anderson Cancer Center for the treatment of these seizures. Based on the EEG and MRI reports done there, we knew he was having seizures...PETIT MAL SEIZURES was his actual diagnosis (click on link to read more about these). His neurologist had suggested and we have tried with no success three different seizure medications. Two of these medications showed no improvement with moderate to severe side effects. The third medication we tried had very mild side effects and after a few months we saw a decrease in seizure activity. Thinking we had found the medicine that would work for him, we increased the dosage. With no more decrease in seizures we increased the dosage a second time. Lab results showed a toxic medication level in his body, so we were forced to cease usage of that medication as well. Thinking that medicine was responsible for the only decrease in seizures we had seen over the last 11 months, we feared the seizure activity would increase after we stopped giving him the meds. To our surprise, the seizure activity stayed the same (1-2 seizures a day). Turns out, the Depakote was not responsible for the decrease in seizures-God was!
The percentage of epilepsy patients that don't respond by the third medication is low...about 25%. Because of this, his neurologist wanted him to see an Epileptologist, Dr. Gretchen VonAllmen at Hermann Hospital in Houston. She scheduled us for an admission that would last 5 days for an epilepsy study. 24 hr. video monitoring and EEG monitoring took place for 4 days along with a MEG scan and MRI. Based on what she saw through video and EEG and what her nurses witnessed during the seizures (every time he had a seizure I had to hit an alarm and 1-4 nurses would literally run into the room and start taking notes, asking Braydon questions, and checking him out-yes even in the middle of the night :)) she gave us her diagnosis and recommendations for treatment.
The diagnosis is Atonic seizures (or drop seizures). This is a completely different diagnosis than we got from his neurologist??? (We now wonder if we should get a third opinion.) Dr. Von Allmen's recommendation for treatment is yet another medication called BanZel. This is a newer medication (only approved by the FDA 2 years ago.) I told her we would research the medication, pray about it and let her know sometime this week. We needed this time because we had no peace about the treatment she was suggesting.
So now we are left to make the decision of whether or not to give him another medication that has it's own side effects and risks. And like most seizure medications, because it is a mind and mood altering drug, he will most likely not feel like "himself" on it. That was our biggest concern and dislike with the other medications was that Braydon was not himself most of the time. He was tired, sluggish, no sparkle in his eyes, irritable, etc. That is not the Braydon we want to see every day! And we sure don't want him feeling bad every day.
I asked Dr. Von Allmen if NOT treating the seizures was an option. I mean he usually has one seizure a day and it is usually first thing in the morning. So outside of the first 20-30 minutes of his day, he seems virtually unaffected by the seizures. He carries on normally during play, schoolwork, chores, social situations, etc. So if this is not affecting his quality of life, can we just not treat it, that way he doesn't have to feel bad and deal with potentially harmful side effects from medications. Her answer was we could but she doesn't recommend it because if untreated the seizures could potentially get worse or change in nature and frequency. But by talking with her and with mom's of other epilepsy patients, I've learned that that can happen even while on medication(s).
I also asked that if we decided to try this medication and it didn't work where does that leave us. She mentioned another medication that she thought might work...Felbatol. I know and have read enough about this potentially dangerous medication that I would never even give it a try with Braydon. (Click on link and read info on the drug if interested in what I mean.) And if that didn't work her suggestion was VNS surgery. VNS (Vagus nerve stimulation) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker. The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.
While I'm not saying this is not an option at some point in the future. I think mentioning it after only 11 months of seizures that we have been told he could potentially grow out of was a little premature. And again we feel very strongly that if his quality of life is great (better than it's been in a while actually) why would we do any of these things to him. We just really feel God is telling us "no" on all of these things and to patiently wait on HIM right now.
We are leaning most towards a third opinion before we do anything. We feel like God is guiding us and leading us in the right way and feel that He may have already lead us to a doctor at an epilepsy center in Laredo, Tx. We don't know really. We are just pressing in and praying and hoping at this point. We need lots of prayer right now to make the right decisions and there is alot to think about here. Please be in prayer with our family most importantly for healing for Braydon. Medical intervention I know is sometimes necessary and we believer that God sometimes uses that to heal people and restore health, but we are a little partial to miracles because we have seen them first hand, so our prayer is that healing comes through medicine or miracle...preferably the latter. Also we need prayer as his parents to make the best possible decision for him in ALL areas but especially medically. I will keep you updated as things happen. Thank you all for your prayers and love you show our family.
Sunday, December 5, 2010
December 6th...
December the 6th is a special day. It was the day we were given our first gift from God. The person from whom we would learn the most from in our lives. Who would change our lives forever and then change them again. We have been so blessed by Braydon over the last 8 years and we look forward to so many more with him. Happy
8th birthday to one of the two greatest boys ever!
On Saturday Braydon had his birthday party. This year we had a snake party! With LIVE SNAKES! The Creature Teacher brought 6 of her coolest animals and did a 30 minute show for Braydon and about 25 of his best friends. This is my son TOUCHING A SNAKE!!! Agh!
This is the snake cake I made him. Cakes are not my specialty (to say the very least) but he loved it and that's all that matters!
Today on Braydon's 8th birthday-he and I are getting in the car and driving to Houston to spend the next 6 days in the hospital for an epilepsy study. Please pray that all goes well and we will know more about his condition when we return. Full update with GREAT reports in a week.
8th birthday to one of the two greatest boys ever!
On Saturday Braydon had his birthday party. This year we had a snake party! With LIVE SNAKES! The Creature Teacher brought 6 of her coolest animals and did a 30 minute show for Braydon and about 25 of his best friends. This is my son TOUCHING A SNAKE!!! Agh!
This is the snake cake I made him. Cakes are not my specialty (to say the very least) but he loved it and that's all that matters!
Today on Braydon's 8th birthday-he and I are getting in the car and driving to Houston to spend the next 6 days in the hospital for an epilepsy study. Please pray that all goes well and we will know more about his condition when we return. Full update with GREAT reports in a week.
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