This week we had our eye checkup. Calvin's eyes appear to be fine. The drifting in one the dr. was worried about doesn't seem as bad as at our last visit. The drooping is not apparent. His vision is fine (not going up or down) and the concerns of a couple of months ago are gone. I am not sure if the itty bitty extra effort we are putting into getting his contact in and he patched for about 2 weeks at 15 min/day made that difference or if we are just lucky. And in my view, there's no such thing as "just lucky" -- really it means we are really blessed. I hadn't even realized that we were so lucky until Jessica asked me how everything went at the appointment. I am so quick to forget those major stresses, probably it is my way to cope, but I want to be sure to never forget to be thankful for the miracles, tender mercies and kisses on the cheek from God that we experience in our lives. We experience them so often and I am so thankful.
(I got the phrase kisses on the check from God from a great parenting book called 10 habits of Happy Mothers by Meg Meeker. It was one of my favorite parenting books of all time. It is not so much a parenting book as it is a how to be a great person so you can be a great mother book. I highly recommend it!)
Sunday, June 23, 2013
Saturday, June 8, 2013
June 6 neurology appt
We had our neurology appt with Dr. Nespeca this week. Here is the bullet statement summary.
-dr is pleased the trileptal is controlling the seizures and even the inter-ictal spikes seen before.
-dr had received a call from the epilepsy foundation about Calvin's behavior at the meetings. They aren't really sure what to do with him there. (I was fully aware of how Calvin is trouble there but amazed they called asking Dr. Nespeca for help. He was pretty surprised too. Calvin swears a lot at those meetings and it is difficult since there are so many young impressionable kids at those meetings ranging from 2-teenagers. The format is that the parents go in one room for a parent meeting and the kids go to another room for expressive arts. There is a very high adult/student ratio and it is fun stuff so there are rarely if ever any problems. Except for Calvin who is pretty tough. Last meeting when I went to get him to go home he refused to leave and escalated into a full fit, throwing, screaming, hitting, etc. I ended up having to hold him in a restraint for about 45 minutes before I was able to leave. The girls were being supervised by some of the supervising adults there but it was not a pretty sight. The meeting was from 6-8pm. We got home close to 10 on a school night. It was a disaster. They called me asking what we should do or if there is someone that can come and sit with him in the meetings so I can still go to the parent meetings. I have nobody. I will probably skip June and then I think July/Aug there are no meetings and maybe by Sept we can try again).
-Calvin was not at all in a good mood during this visit. Completely uncooperative. dr. couldn't examine Calvin. Calvin even tried to kick the dr. when he came over to talk to him. This is the first time Calvin has been uncooperative at a neurology visit so this was dr. nespeca's first time seeing what Calvin is really like. Dave had to restrain Calvin in his arms during our wait in the waiting room (45 minutes) plus our visit with the dr. (30 min).
-Dr was wondering how we ever get anything done if Calvin acts like that and wondered how many hours/day we spend holding him.
-Dr. is pleased we are seeing dr. max on Monday.
- There was one unusual wave form on the EEG, not an epileptic spike, but a wave in the temporal lobe that occured each time just as Calvin was falling asleep. It is something that is commonly seen in 3-5 year olds but not in older children. This finding suggests that Calvin is either very slowly developing in part of his brain or that he is no longer developing in that part of his brain. So, while the EEG gave us good information about his seizures it also added information that makes it look like Calvin does have a physical problem in his brain causing his problems (behavior, developmental and even the seizures). dr. Nespeca did not speak a lot about this but he and Dr. Wang both mentioned it.
-3 months ago at our last visit when I told dr we were applying for regional center he thought we probably wouldn't get in and thought we probably weren't good candidate. I think he was surprised to hear we were applying. After seeing the video EEG and Calvin's behavior he had made a complete change of heart and now is completely endorsing our application. While we were in his office Dr. wrote a letter for us to take to our regional center appeal meeting on Monday with results of the video EEG and stating that he hopes they will accept Calvin and offer our family help in the form of behavioral support and respite care.
-dr. added White matter abnormality to Calvin's diagnosis list. I think it used to say mesial temporal sclerosis but he changed it to white matter abnormality. It think he did this so it is a more general term to explain his developmental disability rather than just a term associate with seizures.
complete diagnosis list from neurology
-localized (focal) (partial) epilepsy and epileptic syndromes with complex partial seizures, without mention of intractable eplipsy
-Oppositional Defiant Disorder (ODD)
-aggression
-sleep disorder
-white matter abnormality of the brain
On the other lists (plastics, neurosurgery, ophthalmology) would be
strabismus
craniosynostosis
amblyopia
-dr is pleased the trileptal is controlling the seizures and even the inter-ictal spikes seen before.
-dr had received a call from the epilepsy foundation about Calvin's behavior at the meetings. They aren't really sure what to do with him there. (I was fully aware of how Calvin is trouble there but amazed they called asking Dr. Nespeca for help. He was pretty surprised too. Calvin swears a lot at those meetings and it is difficult since there are so many young impressionable kids at those meetings ranging from 2-teenagers. The format is that the parents go in one room for a parent meeting and the kids go to another room for expressive arts. There is a very high adult/student ratio and it is fun stuff so there are rarely if ever any problems. Except for Calvin who is pretty tough. Last meeting when I went to get him to go home he refused to leave and escalated into a full fit, throwing, screaming, hitting, etc. I ended up having to hold him in a restraint for about 45 minutes before I was able to leave. The girls were being supervised by some of the supervising adults there but it was not a pretty sight. The meeting was from 6-8pm. We got home close to 10 on a school night. It was a disaster. They called me asking what we should do or if there is someone that can come and sit with him in the meetings so I can still go to the parent meetings. I have nobody. I will probably skip June and then I think July/Aug there are no meetings and maybe by Sept we can try again).
-Calvin was not at all in a good mood during this visit. Completely uncooperative. dr. couldn't examine Calvin. Calvin even tried to kick the dr. when he came over to talk to him. This is the first time Calvin has been uncooperative at a neurology visit so this was dr. nespeca's first time seeing what Calvin is really like. Dave had to restrain Calvin in his arms during our wait in the waiting room (45 minutes) plus our visit with the dr. (30 min).
-Dr was wondering how we ever get anything done if Calvin acts like that and wondered how many hours/day we spend holding him.
-Dr. is pleased we are seeing dr. max on Monday.
- There was one unusual wave form on the EEG, not an epileptic spike, but a wave in the temporal lobe that occured each time just as Calvin was falling asleep. It is something that is commonly seen in 3-5 year olds but not in older children. This finding suggests that Calvin is either very slowly developing in part of his brain or that he is no longer developing in that part of his brain. So, while the EEG gave us good information about his seizures it also added information that makes it look like Calvin does have a physical problem in his brain causing his problems (behavior, developmental and even the seizures). dr. Nespeca did not speak a lot about this but he and Dr. Wang both mentioned it.
-3 months ago at our last visit when I told dr we were applying for regional center he thought we probably wouldn't get in and thought we probably weren't good candidate. I think he was surprised to hear we were applying. After seeing the video EEG and Calvin's behavior he had made a complete change of heart and now is completely endorsing our application. While we were in his office Dr. wrote a letter for us to take to our regional center appeal meeting on Monday with results of the video EEG and stating that he hopes they will accept Calvin and offer our family help in the form of behavioral support and respite care.
-dr. added White matter abnormality to Calvin's diagnosis list. I think it used to say mesial temporal sclerosis but he changed it to white matter abnormality. It think he did this so it is a more general term to explain his developmental disability rather than just a term associate with seizures.
complete diagnosis list from neurology
-localized (focal) (partial) epilepsy and epileptic syndromes with complex partial seizures, without mention of intractable eplipsy
-Oppositional Defiant Disorder (ODD)
-aggression
-sleep disorder
-white matter abnormality of the brain
On the other lists (plastics, neurosurgery, ophthalmology) would be
strabismus
craniosynostosis
amblyopia
Sunday, June 2, 2013
thankful
This is a great talk. by Elder Holland from April General Conference this year. It is 14 minutes long. If you do not have 14 minutes, at least watch the first 4 minutes.
On one occasion Jesus came upon a group arguing vehemently with His disciples. When the Savior inquired as to the cause of this contention, the father of an afflicted child stepped forward, saying he had approached Jesus’s disciples for a blessing for his son, but they were not able to provide it. With the boy still gnashing his teeth, foaming from the mouth, and thrashing on the ground in front of them, the father appealed to Jesus with what must have been last-resort desperation in his voice:
“If thou canst do any thing,” he said, “have compassion on us, and help us.
With no other hope remaining, this father asserts what faith he has and pleads with the Savior of the world, “If thou canst do any thing,have compassion on us, and help us.”3 I can hardly read those words without weeping. The plural pronoun us is obviously used intentionally. This man is saying, in effect, “Our whole family is pleading. Our struggle never ceases. We are exhausted. Our son falls into the water. He falls into the fire. He is continually in danger, and we are continually afraid. We don’t know where else to turn. Can you help us? We will be grateful for anything—a partial blessing, a glimmer of hope, some small lifting of the burden carried by this boy’s mother every day of her life.”As I read this talk today, I can relate to that father's prayer of supplication to the Lord. And I realized that I receive this help all the time. I don't think there is ever a week that I don't have something fall in my way to give me a little extra help. I meet somebody at the park, I find a book, I have a "good day", something goes my way. I have a glimmer of hope, some small lifting of the burden very often. On days when I feel totally overwhelmed I forget how lucky I am. It is easy to wallow in self-pity and think that my life is too hard, but I should be more grateful for the many blessings I have and for the way that we are continually blessed and as Elder Holland says, allow my faith to guide me instead of "leading with unbelief".
Dave is back to a busy schedule. At best he will be with us on Sunday's every other week. I have been trying to put together a game plan on how to go to church with the kids by myself. So far, I have come up with this plan. If Calvin is not "well enough" for church I will at least take the girls and drop them off (clare and lexey). I have arranged for them to sit with a friend every week. That way at least they can always make it to church. Today I did drop them off and we came home. Calvin was not happy with the clothes that were available for church or the snack I packed. After a short fit and a trip to the bathroom Calvin fell asleep. Jo is napping too so instead of church at church I have 90 minutes of church at home. I am getting some FHE lessons ready and listening to a few talks.
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