Today has been an amazing day!! Josh is off every Friday so it usually is a day we spend together just being a family. So today started out great with Dawson waking up in such a good mood. He woke up giggling and smiling from ear to ear!! Then DJ got up in a really good mood and we all got ready and headed to our "Every Friday" ritual...WILD WINGS!! It was a beautiful day, sunny and 60+ degrees. We had wings and then we decided to go to the Greenville Zoo. Neither of the boys or myself had been there and Josh had not been there since he was a little kid. Dawson smiled the whole time (until the end and he was getting tired) and DJ was just amazed at all of the animals. He walked in and saw the elphants and screamed, "Efanat". It was the cutest thing. I think his favorite part was feeding the monkeys and especially the goats. He just laughed when the goats licked him with their tongues as they were trying to eat out of his little hand. We then took DJ and let him play on the playground and he loved it. We then came home to an amazingly clean house thanks to my precious sister-in-law, Libby. She is awesome and I don't know what I would do without her!! (Love you Libby!) We then went to eat at Red Lobster with some amazing friends. (more like family) We then came back to our house to just hang out. Thank you Jesus for giving us such a beautiful day!!
God is faithful!!!
Friday, January 15, 2010
Wednesday, January 13, 2010
Seizures
Well one thing that we have learned with Dawson is that he will always keep us on our toes. One thing that we have also learned with Trisomy 18, the genetic disorder Dawson has, is that anything could happen or start when you least expect it. That is the way that it was with several things. When he was one month old he begin to go into congestive heart failure and had to have his 1st heart surgery. At 6 months his airway had become so floppy that he was diagnosed with tracheomalachia and needed a trach to help with that, and when he was 2 he was having numerous UTI's (one with a fever of 105) and we discovered that he had bladder reflux. Oh I forgot right after his trach was removed it was discovered that he had severe sleep apnea causing his oxygen levels to drop down into the 60's and would need to be on CPAP.
Well in April of this year what we were not expecting happened. We had just went to lunch after church and we were riding down Woodruff Rd. Josh looked back and said, "Dawson is blue and I don't think he is breathing!" Well as a mother, this is definately not the words you want to hear about your child. When I looked back he was a greyish/blue and in a blank stare at me. When I tried to rub his chest his head just slumped over. We immediately pulled over in the middle of Woodruff road and started working with him. We called the EMS and we were taken directly to the hospital. Well we didn't have a sat monitor on him that time so we had no idea just how bad it was. They didn't do anything on that trip to the ER because they didn't know if it was an apnea from his airway closing off or if it was a seizure. I don't know about everyone else but that word, SEIZURE, scared me to death. He was fine and then about 3 weeks later we were out and he did it again so we went straight to the ER from the doctors office. This time we had his sat monitor on and his oxygen levels went down to the high 50's. Both of the episodes had presented the same way. He would have a big yawn, start a "blank" stare, and then he would turn blue and his sats would drop. Each time his heart rate went up.
So at that time they decided to try a very mild dose of Keppra. We started out with 1 ml of Keppra two times a day. It knocked him for a loop. He slept for 2 days straight. So I called them and they went down to .5 mls 2 times a day. It was working!! We had gotten up to 1.5 mls 2 times a day and he was tolerating it well and was seizure free. We had a great summer seizure free and then in September, on our anniversary, he started the episodes again. Only this time he would have one that lasted about 30 seconds and then 1-2 minutes later he would have another one. We upped his Keppra several times and they continued to happen. They had gotten so frequent that for 6 weeks straight we had one every Monday between 5-7 pm. We could almost predict when they would happen. The doctor that Dawson was seeing at the time just kept wanting to up his meds but kept telling us that he didn't know for sure if it was seizures or if it was his airway. Well we really prayed about it and talked with our pediatrician. We were at the point of driving to Charleston just to see someone else. Well when we talked with our amazing pediatrician, which might I add loves Jesus a WHOLE bunch, he told us to try one other doctor before we did that. So we agreed. Oh, I forgot to tell you that we, along with Dr. Dobson and Dr.Gault, thought it would be a good idea that we do a long term EEG in the hospital to determine if it was definately seizure activity. So we mentioned it to our neurologist and after some hesitation, he agreed to do a long-term EEG. He would put us in the hospital for up to 4 days and monitor him to hopefully catch one. It was a really weird feeling when we were there that where we had been praying, "God help Dawson to never have another seizure" to "God please let him have one of these seizures while we are on this test." We just really wanted a definate answer because I think the unknown of whether it was a seizure or if it was his airway and he needed a trach back was what was the scariest. Well that was the 6th week and like clockwork he had one and they saw it on the EEG machine, PRAISE THE LORD!! The doctor that we had been seeing came in on Tuesday and said, "Well yesterday was Monday, did he have one?" I think he was a little suprised when I told him yes. So it was determined that he was having seizures. He changed his Keppra from 4 mls two times a day to a total of 10 mls three times a day. He had one more seizure after that and the doctor added another med, Klonopin, which is in the same family with Diastat. He started him on a dose that just knocked him out so we cut the dose in half and it seemed to stop the seizures. They had stopped for almost a month and we went back for our follow-up.
So when we went back for our follow-up, Dr. Dobson called in and switched us to the new doctor. So
we started seeing Dr. Addie Hunnicut. (well to say the least, we can add her to the list of amazing doctors that God has blessed us with) She was amazing! The first time that we went in to see her she not only got alot of information on Dawson but she gave us alot of information about Dawson's seizures. This is the first time that we had gotten any detailed information. She showed us the activity that they had captured on the EEG and even took the time to explain it. Dr. Hunnicut told us at that time that his diagnosis was complex partial seizures. She then had a plan that she explained in detail to us. Her plan was to try and switch Dawson to another med other than Klonopin because it is in the same family with Diastat that they use as an emergency drug, and they want to make sure that he would respond to the emergency drug if necessary. So we started Trileptal with the Klonopin with the hope that we would begin to ween it after about a week. We started to ween but then he had a seizure so she decided to wait until the Trileptal had been in his system for 2 weeks. Well when he had been on it for 2 weeks he broke out in a head-to-toe red rash. (Welps!!) So we stopped the Trileptal and started with Topamax. Well we are still trying to adjust his dose but he has done well on it. Hopefully soon we will be able to start to ween his Klonopin again but as for know we are on 3 seizure meds. :(
I know this was alot of information but maybe it will help some one else. I wish that I had been able to find some kind of information when I was starting this journey. I will keep everyone posted.
One of the many parts of our journey and continually we are remined, God is faithful!!
Well in April of this year what we were not expecting happened. We had just went to lunch after church and we were riding down Woodruff Rd. Josh looked back and said, "Dawson is blue and I don't think he is breathing!" Well as a mother, this is definately not the words you want to hear about your child. When I looked back he was a greyish/blue and in a blank stare at me. When I tried to rub his chest his head just slumped over. We immediately pulled over in the middle of Woodruff road and started working with him. We called the EMS and we were taken directly to the hospital. Well we didn't have a sat monitor on him that time so we had no idea just how bad it was. They didn't do anything on that trip to the ER because they didn't know if it was an apnea from his airway closing off or if it was a seizure. I don't know about everyone else but that word, SEIZURE, scared me to death. He was fine and then about 3 weeks later we were out and he did it again so we went straight to the ER from the doctors office. This time we had his sat monitor on and his oxygen levels went down to the high 50's. Both of the episodes had presented the same way. He would have a big yawn, start a "blank" stare, and then he would turn blue and his sats would drop. Each time his heart rate went up.
So at that time they decided to try a very mild dose of Keppra. We started out with 1 ml of Keppra two times a day. It knocked him for a loop. He slept for 2 days straight. So I called them and they went down to .5 mls 2 times a day. It was working!! We had gotten up to 1.5 mls 2 times a day and he was tolerating it well and was seizure free. We had a great summer seizure free and then in September, on our anniversary, he started the episodes again. Only this time he would have one that lasted about 30 seconds and then 1-2 minutes later he would have another one. We upped his Keppra several times and they continued to happen. They had gotten so frequent that for 6 weeks straight we had one every Monday between 5-7 pm. We could almost predict when they would happen. The doctor that Dawson was seeing at the time just kept wanting to up his meds but kept telling us that he didn't know for sure if it was seizures or if it was his airway. Well we really prayed about it and talked with our pediatrician. We were at the point of driving to Charleston just to see someone else. Well when we talked with our amazing pediatrician, which might I add loves Jesus a WHOLE bunch, he told us to try one other doctor before we did that. So we agreed. Oh, I forgot to tell you that we, along with Dr. Dobson and Dr.Gault, thought it would be a good idea that we do a long term EEG in the hospital to determine if it was definately seizure activity. So we mentioned it to our neurologist and after some hesitation, he agreed to do a long-term EEG. He would put us in the hospital for up to 4 days and monitor him to hopefully catch one. It was a really weird feeling when we were there that where we had been praying, "God help Dawson to never have another seizure" to "God please let him have one of these seizures while we are on this test." We just really wanted a definate answer because I think the unknown of whether it was a seizure or if it was his airway and he needed a trach back was what was the scariest. Well that was the 6th week and like clockwork he had one and they saw it on the EEG machine, PRAISE THE LORD!! The doctor that we had been seeing came in on Tuesday and said, "Well yesterday was Monday, did he have one?" I think he was a little suprised when I told him yes. So it was determined that he was having seizures. He changed his Keppra from 4 mls two times a day to a total of 10 mls three times a day. He had one more seizure after that and the doctor added another med, Klonopin, which is in the same family with Diastat. He started him on a dose that just knocked him out so we cut the dose in half and it seemed to stop the seizures. They had stopped for almost a month and we went back for our follow-up.
So when we went back for our follow-up, Dr. Dobson called in and switched us to the new doctor. So
we started seeing Dr. Addie Hunnicut. (well to say the least, we can add her to the list of amazing doctors that God has blessed us with) She was amazing! The first time that we went in to see her she not only got alot of information on Dawson but she gave us alot of information about Dawson's seizures. This is the first time that we had gotten any detailed information. She showed us the activity that they had captured on the EEG and even took the time to explain it. Dr. Hunnicut told us at that time that his diagnosis was complex partial seizures. She then had a plan that she explained in detail to us. Her plan was to try and switch Dawson to another med other than Klonopin because it is in the same family with Diastat that they use as an emergency drug, and they want to make sure that he would respond to the emergency drug if necessary. So we started Trileptal with the Klonopin with the hope that we would begin to ween it after about a week. We started to ween but then he had a seizure so she decided to wait until the Trileptal had been in his system for 2 weeks. Well when he had been on it for 2 weeks he broke out in a head-to-toe red rash. (Welps!!) So we stopped the Trileptal and started with Topamax. Well we are still trying to adjust his dose but he has done well on it. Hopefully soon we will be able to start to ween his Klonopin again but as for know we are on 3 seizure meds. :(
I know this was alot of information but maybe it will help some one else. I wish that I had been able to find some kind of information when I was starting this journey. I will keep everyone posted.
One of the many parts of our journey and continually we are remined, God is faithful!!
Monday, January 11, 2010
New Year - New Start to Blogging!!
Hello all of my sweet friends!! So, I noticed today when I pulled up my blogroll that my sweet friend Jody had started back blogging. (check her out here) It was so nice to see how she was doing and to just be able to reconnect and find out what has been going on in her life. (Not to mention I learned how to fry okra :) ) So I have decided to start blogging again. I know that I love to keep up with what is going on in other peoples lives that I don't see on a regular basis so I am guessing the same is probably true about us.
So here is just a brief recap of 2009:
So here is just a brief recap of 2009:
Got a new/used car (Yukon) and I love it!!, Dawson started having seizures in April, Our foster childs' birthparents signed over their rights (we are just waiting on a court date to be able to adopt him), Dawson was granted a Wish and we traveled to Disney World in May (Thank you sooooo much Make a Wish of SC), Dawson had more intense seizures and had to add more meds, We were denied a Sleepsafe bed for Dawson (we will have a hearing next Wednesday in Columbia to appeal the decision, PRAY LIKE CRAZY THAT THEY APPROVE IT!! He really needs it.), I had to have a surgical procedure to remove a thickened lining of my uterus (No Cancer, PRAISE THE LORD!!), We put hardwood floors in Dawson's room and the living room and now Dawson will walk in his walker all over the living room and he will also "crawl" on his back, We got to go to our first SOFT Conference (Trisomy 18) in Virgina and we had an amazing time getting to meet other families that are living with Trisomy 18 (we made great friends with the one family), and even through numerous trials God was faithful to provide!!!
So here we are in 2010, I just turned 34 years old. Josh and I will be married 13 years in September, Dawson is 4 years old, DJ is 2 years old, Josh is the High School pastor to an amazing group of students at our awesome church, Brookwood. God has truly blessed us with so much and has been faithful and continues to be faithful in every aspect of our lives.
The journey continues and God is faithful.
The journey continues and God is faithful.
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