We added an additional medical practitioner to Ian's team. Yesterday, we took Ian to see a doctor that uses a method called NeuroModulation Technique (NMT). It is a form of energetic medicine. The woman that has been doing the energetic healing since early December with Ian suggested I consider NMT. She also suggested a particular practioner who turns out has an office less than an hour away!!
In school this week, we started a regular circle time in the morning with both Ian and Lane which Ian enjoys. He doesn't participate the way Lane does but he does stay with us in the living room and he participates in the capacity he can. He's observing and watching and getting comfortable with the process. We add movements to the songs and slowly we encourage and assist Ian through the movements to help him build his competence.
Ian also enjoyed several walks this past week on the local nature trails and also enjoyed playing in the mud when it rained. He does love being outside in the elements.
Ian continues to struggle with reflux and we continue to try to figure out ways to alleviate it. Medication hasn't helped and the reflux causes such discomfort and distraction making intake of information and social interaction challenging. It also makes peaceful sleep close to impossible. If he doesn't burp enough before falling asleep, he'll toss and turn all night and often wake crying in pain. I can spend up to an hour with him trying to help him burp to relieve the pressure by giving him aloe juice, sitting him upright, shifting him into different positions, and stroking his tummy. Once he burps he can return to sleep but then he wakes in the morning with reflux and so it goes throughout the day. We will find a solution! We just have to keep searching.
Sunday, January 25, 2009
Friday, January 16, 2009
Great morning of School
Yesterday, we started a formal circle time with Ian and Lane. Both yesterday and today, Ian stayed with us the entire time! This morning, Arissa (Ian's teacher) started with some physical movement like bouncing on the couch and running back and forth to get his heart rate up. Then we moved into the songs with movements. We probably sang a total of 7 songs and he watched much of the time. At times he even sat in my lap and let me move his body through the movements. We're focusing on kinestheic learning. Lane LOVED the songs and movement and caught on very quickly.
Then I followed the songs with a focused activity by reading a story. Ian almost made it through the entire 15 minutes but then the hunger bug hit! Lane, again, enjoyed the story. I'm SO excited about the shape our mornings are taking. While waiting for Ian's food to cook, we worked on putting toys into buckets thus cleaning up the TV room before eating. Following Ian's meal he then requested to go outside and he is now jumping on the trampoline. Later we will take a nature walk on the creek trail. Yesterday, we walked for about 90 minutes!! Oh, the days are taking shape and he's HAPPY!!! Much better week, hooray!!
What is also cool about establishing this morning rhythm for our family is that when Lane goes to Kindergarten in August, we'll still have the mornings together because his elementary school has an option for a late start at 11:30.
Then I followed the songs with a focused activity by reading a story. Ian almost made it through the entire 15 minutes but then the hunger bug hit! Lane, again, enjoyed the story. I'm SO excited about the shape our mornings are taking. While waiting for Ian's food to cook, we worked on putting toys into buckets thus cleaning up the TV room before eating. Following Ian's meal he then requested to go outside and he is now jumping on the trampoline. Later we will take a nature walk on the creek trail. Yesterday, we walked for about 90 minutes!! Oh, the days are taking shape and he's HAPPY!!! Much better week, hooray!!
What is also cool about establishing this morning rhythm for our family is that when Lane goes to Kindergarten in August, we'll still have the mornings together because his elementary school has an option for a late start at 11:30.
Monday, January 12, 2009
Family walk on Sunday
It feels like Spring in California in the middle of January!! Lowell and I took the boys for a nature walk on the creek trail. Lowell has lived in Los Gatos since 1989 and he'd never walked on this portion of the trail! Ian LOVED it. He was running and squealing with delight. Watching the birds overhead and dropping to the ground to rub his hands across the gravel. It was a great sensory experience. Experiences like these keep us connected as a family and focused on the importance of enjoying the moment despite the many challenges.
Tough first week of school
Ian had a rough week. It didn't start badly but by Wednesday evening he started having seizures. This means school activity stops and we all focus on keeping him comfortable. From our daily journaling, there is a clear cycle. We usually see seizures about every 5 weeks and they come in clusters for usually 48 hours. This time they lasted 72 hours. He doesn't eat much as his tummy really seems upset and he's typically quite lethargic and often sleeps. However, this time, we took him to see his neurologist on Thursday and he had a seizure in the office. The doctor convinced us to try a drug called Clonopin to stop the seizure activity. The drug usually makes one more sedate which wouldn't matter since the seizures do that anyway. But the drug didn't sedate him but instead stimulated him. He only slept 5 hours on Thursday night! He couldn't stop moving. Yes, it stopped the seizures for about 8 hours but then I was afraid to give him another dose in the middle of the night for fear he would NEVER sleep. We did try a second time on Friday and again, the response was stimulation and stopped the seizures for about 8 hours. But then on Saturday after the medication was out of his system, he had a few more. They should have stopped by Saturday according to our documented history.
Here's my theory (as a mother that has watched Ian have these episodes for 6 years now.) Ian, for some reason, needs to clear out the extra energy that gathers in his body over a period. He needs to do a type of energetic clearing or cleansing and if the process is interrupted by a chemical to stop it, his body will just wait for the chemical to wear off and then proceed with the necessary clearing until the process is complete for that cycle. Then he goes along for another 5 weeks until the energy builds up again to the point where he needs to clear again. I know, very out there but it totally resonates and makes sense to me. After the seizure clusters, we have consistently observed that he's clearer, more cognitively aware and connected. We don't like the seizures and we definitely don't want him in any danger or have damage occur because of them. We do know that's he's an incredibly sensitive being and he doesn't handle chemicals the way they're intended. My goal is to figure out a way to reduce the amount of energy that he gathers. I'm working with the energy healer to solidify his energetic boundary to make him more resilient.
Genevieve has a theory that it has to do with an ingredient Aspartame which is in his allergy medication. We just started the medication in late Nov right before a flurry of seizure activity then started another right before this last flurry. Hmmm, interesting.
Deep breath, lots happening in our little boys body and so many opinions and suggestions come our way from intelligent, educated experts. At the end of the day, Lowell and I have to assimilate the information and make the best decision we can based on what we think is best for Ian. We have to continue to try and trust ourselves.
Today though, he's feeling better despite the continuing reflux!! This morning we had a very productive meeting with several members of Ian's team - the OT, our RDI consultant, and Ian's teacher. We're moving forward and continuing to search for the answers.
Here's my theory (as a mother that has watched Ian have these episodes for 6 years now.) Ian, for some reason, needs to clear out the extra energy that gathers in his body over a period. He needs to do a type of energetic clearing or cleansing and if the process is interrupted by a chemical to stop it, his body will just wait for the chemical to wear off and then proceed with the necessary clearing until the process is complete for that cycle. Then he goes along for another 5 weeks until the energy builds up again to the point where he needs to clear again. I know, very out there but it totally resonates and makes sense to me. After the seizure clusters, we have consistently observed that he's clearer, more cognitively aware and connected. We don't like the seizures and we definitely don't want him in any danger or have damage occur because of them. We do know that's he's an incredibly sensitive being and he doesn't handle chemicals the way they're intended. My goal is to figure out a way to reduce the amount of energy that he gathers. I'm working with the energy healer to solidify his energetic boundary to make him more resilient.
Genevieve has a theory that it has to do with an ingredient Aspartame which is in his allergy medication. We just started the medication in late Nov right before a flurry of seizure activity then started another right before this last flurry. Hmmm, interesting.
Deep breath, lots happening in our little boys body and so many opinions and suggestions come our way from intelligent, educated experts. At the end of the day, Lowell and I have to assimilate the information and make the best decision we can based on what we think is best for Ian. We have to continue to try and trust ourselves.
Today though, he's feeling better despite the continuing reflux!! This morning we had a very productive meeting with several members of Ian's team - the OT, our RDI consultant, and Ian's teacher. We're moving forward and continuing to search for the answers.
Sunday, January 4, 2009
First day of school tomorrow
I'm very excited as I just received more detailed ENKI material for the home school program I've chosen for Ian (and Lane). Tomorrow will be the first day of school. It's really very simple for at this stage of development for both of them, it's really about maintaining a daily rhythm and providing opportunities for neurological growth through movement, primarily sensory integration. We will include creative play (inside and outside), exercise and sensory integration activities, and stories. RDI will fit beautifully into the daily rhythm and I think both boys will flourish. I have a great team ready to go, it's our "village" providing a rich, nourishing (my new favorite word) environment for our two beautiful boys. I know this blog is about Ian but Ian's family is such a big part of his life, I have to mention Lane too.
We have the team collaborating (teacher, OT, RDI consultant, care givers, and most importantly Mom and Dad), the tools to execute (RDI, ENKI, Masgutova Method) and great hope for the year ahead.
We have the team collaborating (teacher, OT, RDI consultant, care givers, and most importantly Mom and Dad), the tools to execute (RDI, ENKI, Masgutova Method) and great hope for the year ahead.
Friday, January 2, 2009
Ian's reflux continues
The whole house clean hasn't fixed the problem this time, at least not yet. I spoke with the allergist this evening and he suggested we try a 24-hour anti-histamine. So, we're going to give that a try. Used Benedryl again this evening but he's still awake and refluxing. Hmmmm, this is really a mystery that needs solving!
Subscribe to:
Comments (Atom)
