Also, in addition to prayers for Jackson, one special little girl, Sophie, (www.oursweetsophie.blogspot.com) is undergoing the same surgery Jackson had in September. However, her resection will be on the left side of her brain. Today is the first part of the surgery where the surgeon places the grids and monitors the activity the rest of the week. They will do the resection this Friday, May 29th. Sophie is such an amazing child who has done so well in development despite the infantile spasms. They tried many drugs and none were ever effective in control.
Her mom, Elaine, is just as wonderful! She is so strong and such a sweet friend. They have been so supportive to me and Jack, and even visited us when we were in the hospital in Detroit after surgery. They had come up for testing for surgical candidacy.
Elaine is 34 weeks pregnant right now!!!...away from her home outside of St. Louis...for approximately 2 weeks. Sophie was actually scheduled to have surgery in late June, but there was a cancellation and they came to Detroit in less than a weeks notice. A lot in a short amount of time! This week is going to be difficult for them, as they will not get a lot of rest and Sophie will not be too comfortable with grids. Please keep the whole Coleman family in your prayers! We pray and hope for a smooth, peaceful and successful surgery for Sophie!
Tuesday, May 26, 2009
Monday, May 25, 2009
Update from Detroit and more...
Well, I didn't see this coming! It was not on my mind..never even crossed my mind, because we have had 7 plus glorious months of no worries!
Then...the week before we left for Detroit, I noticed Jackson "startle" out of the corner of my eye. It was so fast...seemed like the blink of an eye. I thought it was suspicious...the first thing that has even been suspicious to me since surgery. I tried to tell myself it was nothing. Then Tony saw Jackson "jump" while drinking something. Again, so quick we could not tell you exactly what we saw, but it was not sitting well with us. So, I immediately called our epileptologist here in Houston and he said Jackson's Depakote levels have been extremely low each time we have had them checked. It was 15 in February and then 20 in May. (should be 40 - 70) Before, since Jackson was not having any "episodes" there was no reason to increase his meds, however now he said to increase his Depakote, even though it could be nothing. Just to monitor him to see if we saw anymore. Dr. Chugani said the same thing.
Jackson has been pretty much the same weight since surgery...around 32 pounds. However, since his birthday, April 16th, he has gained 3 pounds and an inch in a month. So this could be a factor in effecting his levels as well.
After an EEG, one "myoclonic seizure" was captured and it is coming from the left temporal side of his brain. The actual area is called the perisylvian. A very small focus, which we knew was there prior to surgery. However, the doctors have told us all along that the major focus was on the right side, if we remove that focus, this left one could either go away or be controlled.
The last time Jackson had an EEG was February 23rd. He had some activity and abnormal spiking, but no seizures. His EEG looks pretty much the same now. The good thing is there is no sign of any hypsarrythmia (which is the chaotic brain waves associated with infantile spasms.) The seizures he is having now are different...it's a different "ball game" so to speak. They should not cause him harm in his development. The doctors are not real worried and feel it can be controlled when the med gets to a therapeutic level. We spoke to 3 different Epileptologists separately and they all have the same opinion.
One thing, Dr. Chugani mentioned is that where the focus on the left side, can affect speech and drool. Jackson does drool a lot sometimes. It goes in cycles. I always thought it was teething, but maybe it is from this area. Dr. Chugani wants us to ramp up speech therapy to twice a week to be proactive. However, after hearing Jackson, he felt better about his speech once around him.
In Detroit, Jackson had an MRI. Everything was fine and nothing looked abnormal. Dr. Chugani's team will still analyze the tracks of how the brain is organizing. I do not have this information yet.
Dr. Chugani and Ruth (his nurse) were very pleased with Jackson's progress in development. He has come such a long way since surgery. They said he looks like a different child.
As far as Jackson' s medications, both Dr. Chugani and our Epileptologist in Houston, want to wean Jackson first from the Vigabatrin, since he does not have infantile spasms and can potentially cause irreversible visual damage with long-term use. Vigabatrin is a front-line drug used for the treatment of infantile spasms. Jackson has been on this drug since last May. We order it from Canada monthly and it's quite expensive out of pocket. Then they want to wean him from Phenobarbital, which everyone knows I do not want Jackson on long-term. It can numb the brain cognitively and to me it makes Jackson more aggressive than he really is. Then they will add Clobazam...another Canadian drug. I am not familiar with this one, but Dr. Chugani said they have had great effectiveness and low side effects. So their goal is the Depakote and Clobazam.
When I first saw this happen, it really scared me and Tony. It was the whole unknown and having to relive a nightmare. I have only known the world of infantile spasms with Jackson's history of seizures. HOWEVER, after having the testing and understanding, this new road is not so bleak. Everyone is optimistic for Jackson and that it is a minor bump in the road. Just a matter of adjusting the meds. I guess if it was going to happen, it was perfect timing...right before we went to Detroit.
Since increasing the Depakote, he has improved. It does take a little while to ramp up the levels. Some days I do not see any at all. We go in this Thursday to get his levels checked again. Dr. Chugani wants us to be liberal with his 24 hour Video EEGs until we are comfortable and he is under control again.
There will be another day soon that our little fighter will be back to seizure free. I have so much hope for Jackson...that hope and belief never waivers inside of me. I realize that we do not always have the easiest road, but we will overcome this. Jackson is going to be just fine!!!!! He is still making leaps and bounds...although each day is something small...it is HUGE to us!
Also, I wanted to update that Jackson did have tubes put in his ears on Thursday, May 14th. They decided to also remove his adenoids. He did not do so great with anesthesia this time. It took him three hours to wake up and he was super fussy during that time. He seemed affected way more than when he had brain surgery, which is crazy. However, he was back to normal that evening. The ENT said they did drain a lot fluid, his adenoids were medium to severe, so hopefully he will benefit more from the tubes with his adenoids removed. We can tell he can hear better and he is more stable. They also took a blood sample for allergies while he was under. We go back for follow up mid-June.
Thanks for checking in on Jackson. We didn't want to post until we knew for sure and had all the answers. We just ask for prayers for Jackson and that the increase in Depakote takes care of these seizures!!!
Then...the week before we left for Detroit, I noticed Jackson "startle" out of the corner of my eye. It was so fast...seemed like the blink of an eye. I thought it was suspicious...the first thing that has even been suspicious to me since surgery. I tried to tell myself it was nothing. Then Tony saw Jackson "jump" while drinking something. Again, so quick we could not tell you exactly what we saw, but it was not sitting well with us. So, I immediately called our epileptologist here in Houston and he said Jackson's Depakote levels have been extremely low each time we have had them checked. It was 15 in February and then 20 in May. (should be 40 - 70) Before, since Jackson was not having any "episodes" there was no reason to increase his meds, however now he said to increase his Depakote, even though it could be nothing. Just to monitor him to see if we saw anymore. Dr. Chugani said the same thing.
Jackson has been pretty much the same weight since surgery...around 32 pounds. However, since his birthday, April 16th, he has gained 3 pounds and an inch in a month. So this could be a factor in effecting his levels as well.
After an EEG, one "myoclonic seizure" was captured and it is coming from the left temporal side of his brain. The actual area is called the perisylvian. A very small focus, which we knew was there prior to surgery. However, the doctors have told us all along that the major focus was on the right side, if we remove that focus, this left one could either go away or be controlled.
The last time Jackson had an EEG was February 23rd. He had some activity and abnormal spiking, but no seizures. His EEG looks pretty much the same now. The good thing is there is no sign of any hypsarrythmia (which is the chaotic brain waves associated with infantile spasms.) The seizures he is having now are different...it's a different "ball game" so to speak. They should not cause him harm in his development. The doctors are not real worried and feel it can be controlled when the med gets to a therapeutic level. We spoke to 3 different Epileptologists separately and they all have the same opinion.
One thing, Dr. Chugani mentioned is that where the focus on the left side, can affect speech and drool. Jackson does drool a lot sometimes. It goes in cycles. I always thought it was teething, but maybe it is from this area. Dr. Chugani wants us to ramp up speech therapy to twice a week to be proactive. However, after hearing Jackson, he felt better about his speech once around him.
In Detroit, Jackson had an MRI. Everything was fine and nothing looked abnormal. Dr. Chugani's team will still analyze the tracks of how the brain is organizing. I do not have this information yet.
Dr. Chugani and Ruth (his nurse) were very pleased with Jackson's progress in development. He has come such a long way since surgery. They said he looks like a different child.
As far as Jackson' s medications, both Dr. Chugani and our Epileptologist in Houston, want to wean Jackson first from the Vigabatrin, since he does not have infantile spasms and can potentially cause irreversible visual damage with long-term use. Vigabatrin is a front-line drug used for the treatment of infantile spasms. Jackson has been on this drug since last May. We order it from Canada monthly and it's quite expensive out of pocket. Then they want to wean him from Phenobarbital, which everyone knows I do not want Jackson on long-term. It can numb the brain cognitively and to me it makes Jackson more aggressive than he really is. Then they will add Clobazam...another Canadian drug. I am not familiar with this one, but Dr. Chugani said they have had great effectiveness and low side effects. So their goal is the Depakote and Clobazam.
When I first saw this happen, it really scared me and Tony. It was the whole unknown and having to relive a nightmare. I have only known the world of infantile spasms with Jackson's history of seizures. HOWEVER, after having the testing and understanding, this new road is not so bleak. Everyone is optimistic for Jackson and that it is a minor bump in the road. Just a matter of adjusting the meds. I guess if it was going to happen, it was perfect timing...right before we went to Detroit.
Since increasing the Depakote, he has improved. It does take a little while to ramp up the levels. Some days I do not see any at all. We go in this Thursday to get his levels checked again. Dr. Chugani wants us to be liberal with his 24 hour Video EEGs until we are comfortable and he is under control again.
There will be another day soon that our little fighter will be back to seizure free. I have so much hope for Jackson...that hope and belief never waivers inside of me. I realize that we do not always have the easiest road, but we will overcome this. Jackson is going to be just fine!!!!! He is still making leaps and bounds...although each day is something small...it is HUGE to us!
Also, I wanted to update that Jackson did have tubes put in his ears on Thursday, May 14th. They decided to also remove his adenoids. He did not do so great with anesthesia this time. It took him three hours to wake up and he was super fussy during that time. He seemed affected way more than when he had brain surgery, which is crazy. However, he was back to normal that evening. The ENT said they did drain a lot fluid, his adenoids were medium to severe, so hopefully he will benefit more from the tubes with his adenoids removed. We can tell he can hear better and he is more stable. They also took a blood sample for allergies while he was under. We go back for follow up mid-June.
Thanks for checking in on Jackson. We didn't want to post until we knew for sure and had all the answers. We just ask for prayers for Jackson and that the increase in Depakote takes care of these seizures!!!
Monday, May 4, 2009
Outdoor Fun
Jackson is enjoying playing with all his new birthday toys. I finally cleaned out his toy boxes and removed the ones that needed to go. On Sunday, he had a blast outdoors getting messy! First, I let him finger paint in his diaper. I laid a sheet on the lawn and he went to town. His body was more painted than the paper, but he did some creative art.
Then he got to wash off as he played with his water/sand table. He loves this thing! He gets wet from head to toe. Definitely a water boy! Jackson is beginning aquatic therapy, a 10 week program next month. He actually took some swimming lessons last summer. This one is more structured where they do evaluations. I will be excited to see how he does.
However, first, we have to get his ears fixed. We went to the ENT on Wednesday of last week. They did a hearing test and then we met with the doctor. Jackson is hearing at a 40 -50% loss because of the fluid behind his ear drums. So, this means he will have tubes put in on Thursday, May 14th. They will give him general anesthesia, then the doctor will poke a needle in the ear drum, drain the fluid and put the tubes in. 5 minute procedure. I feel bad that he has not been able to hear clearly all this time. His left ear is worse than the right. We are hoping that once this procedure is done, then it will help his speech, hearing and equilibrium.
Then the following week, Monday, May 18th we leave for Detroit for our follow up. We will be there through Wednesday, the 20th. Jackson will have an MRI on Tuesday at 1 pm and an EEG at some point. He will have to be sedated for the MRI too. I did check with his Neuro to make sure these two procedures (MRI and tubes) could be done so close, and he said it was okay. Then on Wednesday we will see Dr. Chugani. We are looking forward to going. Mostly, we pray for good test results for Jackson and that everything looks good and is organizing like it should! I think everyone will be pleased by how far Jackson has come in the past 7 months since surgery!
Jackson is starting to become the little explorer now. Since he has been crawling, he would pretty much just go short distances or stay in whatever little area I would have him in. Now, he is taking off from room to room and down the hallway. The first time I saw him take off, I was in the family room on the phone and I see him crawl past the couch. Then he turned the corner to go down the hallway. I was so excited...I kept peaking at him around the corner to see where he was going. I did not want him to see me or he would have turned back. I don't know where he was going, but as soon as he make it to the opening of our guest room, he saw his beloved exersaucer (that he no longer fits in) and took off to get to it. He raced over and pulled up to stand and started playing with it from the outside. It was too cute! Since then, he has gone to different areas of the home and we are loving this new development with him!
We are so thankful to God for the healing in Jackson's life and all the continued prayers for our son!
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