Soren is continuing to do well. Yes, he's still having seizures. But he'll actually have days when he doesn't have them. And the days that he does have them he bounces back quite quickly.
We're continuing to adjust his new meds with success. It's a lot of guesswork, but Soren is responding well and we feel good about the choices we're making. We've gotten some smiles and laughs. He's more engaged. He lets us know when he's upset or wants to get out of bed. There's a lot more "typical" behavior going on that is very promising. When Aaron enters the house and Soren hears his voice, he tries to look for him, working to turn his head or body around to find him. When all of us are surprisingly at home, Soren gets a smile on his face.
This summer we went to Carpinteria for Aaron and my birthdays and our 20th anniversary. Seizure-wise, Soren started out good, but then he had a really rough couple days. No rhyme or reason to it. That's just how it goes. The city of Carpinteria has a beach wheelchair that folks can borrow, so we took some lovely walks along the beach. And one of Soren's favorite things to do is relax in the shade on the beach and get his toes in the sand. We've been to Carp enough that Soren is seems comfortable in the town.
Soren is also responding to familiar family members. My family went to Catalina Island to celebrate my Dad's 70th and my brother's 44th birthdays, so Soren ended up hanging out with everyone quite a bit. My brother Patrick came to stay with us a week later and when he arrived, Soren became very animated and chatty. He clearly remembered Uncle Pat and had many things he wanted to say to him. Similarly, my Dad and Kathy came over this weekend to watch Soren and Moira while Aaron and I went to a wedding on Sunday. They arrived and then went out to with Moira to get her some running shoes for P.E. After they left, Soren was clearly looking for them and chatting away. He was glad when they returned and enjoyed hanging out with his grandparents.
Moira volunteered at Soren's school this summer and she was very surprised to see how much he was sleeping in class. She totally called him out on it. Aaron and I then realized, as parents, we needed to tell Soren that we had certain expectations from him when he went to school like we did for Moira. So we spoke to him very matter-of-factly and he started stepping up his game.
When the school year began, we found out that Soren was getting a new teacher. Last year he had a new male teacher. This year he has a new female teacher. And while he has had some awesome male teachers, Soren likes the ladies. Always has. The boy is a flirt. So between the pep talk and his new female teacher, he's been staying awake in school.
I haven't updated in a while because I've been very busy working and with the family. Then I received a comment on Soren's blog from the parent whose 10 year-daughter was watching Bronies: The Extremely Unexpected Adult Fans of My Little Pony, the Brony documentary where I'm briefly interviewed. He happened to hear me talk about Soren and he tracked me down because he has a 14 year-old son that, due to a brain hemorrhage as an infant, was left with multiple disabilities and intractable seizures. He started reading my blog and realized that while our sons have different diagnoses, we've had many similar experiences. And that's part of why I've written this blog. To help other parents who are on this same journey find ways to manage things. To help them see that they're not the only ones dealing with annoying medical companies. To say, we've tried this and it worked or it didn't. I'm so glad that my little part in the Brony Doc found someone and he found the blog and that it reminded me that I need to post about Soren so that all of you can know how he's doing.
Soren is a strong boy that doesn't give up no matter how crappy his day starts out or ends. I'm constantly impressed and inspired by him.
Amy
Tuesday, September 02, 2014
Thursday, February 20, 2014
How's Soren?
Haven't written in a long, long time and realized I should really answer this question for inquiring minds.
How's Soren?
Well, he's actually doing really well. We started him on a new medicine back in November and while it doesn't completely control his seizures, we've seen lots of benefits that make continuing the medicine completely worth while. First of all, even when he does seize, he bounces back much quicker. He can even have a whomping Tonic-Clonic in the morning and be okay by the time he's going to school. That's impressive!
But we've also seen behavioral changes, and that's been so encouraging!
The changes we have seen are:
How's Soren?
Well, he's actually doing really well. We started him on a new medicine back in November and while it doesn't completely control his seizures, we've seen lots of benefits that make continuing the medicine completely worth while. First of all, even when he does seize, he bounces back much quicker. He can even have a whomping Tonic-Clonic in the morning and be okay by the time he's going to school. That's impressive!
But we've also seen behavioral changes, and that's been so encouraging!
The changes we have seen are:
- Turning to both sides. Getting to his stomach again. Turning on his side in bed.
- Ab crunches, Head lifts. Indicating he wants to get up.
- Resting his head in his hands to sleep while sitting up.
- Vocalizing more often and more consistently. New sounds (GUM)
- Improved mood. More engaged in activity around him.
- Little to no teeth grinding indicating less anxiety.
- Smiles. Giggles. (many times)
- Scooting out of his vision box.
- Desire to stand up more. Straightening legs when lifted.
- Feet tapping together indicating excitement or interest in activities.
- Swallowing water when brushing teeth.
- Increased eye contact.
Soren also battled an ear infection recently which upset his applecart, but all things considered, he managed quite well.
So that's the update! We are hopeful that once we wean the old medicine that the new medicine will be even more effective.
And most importantly, Soren is much happier, which makes us happier!
Amy
Wednesday, October 16, 2013
Discontent with Incontinence
I have a confession to make. Having a child with disabilities has turned me into a very undiplomatic person. I get very impatient when people can't do their jobs and I must call them up and remind them how to do them. I know that, as parents, it is our job to make sure everything is being done for our kids. It's what we sign up for. And I started out so nice. So kind. So patient. But over the past 10 years of people being so inept, I have gotten cranky. And I realize that's not good. You catch more flies with honey than vinegar. But the more people flounder, the more I want to tell them how much they totally suck at their jobs.
But let me catch you up as to why I've become a major cranky pants that resorts to yelling at people over the phone and telling them what for. Soren was born in 2003. Like any parents of a baby, we paid for his diapers. However when it became clear that potty training wasn't going to be an option for our boy, diapering/incontinence supplies started being subsidized. Now, I'm a little fuzzy as to when this started. But according to my records, it's at least 2010. All we needed was a prescription from Soren's pediatrician. Yippee! However, our primary insurance through Aaron's work doesn't cover incontinence supplies. Boo. But Soren has "medically necessary" MediCal and they cover incontinence supplies. Like any secondary, they need a letter of denial from the primary. I have one such letter from 2011 that I keep in The Incontinence Supplies File. That letter of denial means that we've been accepted to the World of Free Diapers, Pads and Underpads. And in the expensive world of a child with disabilities, that means a lot.
A wonderful company called Shield Healthcare used to provide Soren's supplies. They'd deliver every month like clockwork. Authorizations only had to be procured once a year. And while I'm sure I'm remembering this much rosier than reality, I really do think they were awesome. Then MediCal changed stuff around and Soren's new coverage didn't work with Shield (no idea why).
A new supplier was assigned. Hoops had to be jumped through. The prescription from his pediatrician that had seen Soren since birth and new his entire medical history no longer worked anymore. That would be too logical! I had to take Soren to a MediCal doctor to prove that Soren was disabled so the doctor could sign a form saying Soren needed these supplies. Under the new system, the supplier had to get authorizations every 3 months or so. And you know what that meant? A delay in delivering diapers! Do you know what a delay in delivering diapers means? A really tense mom!
Since I was still at the beginning of this journey, I got things done quickly and made friends with a lovely VP of Operations at MediCal who gave Soren a standing authorization. The supply company just had to fax the request and the authorization would be sent right to them. Sounds simple enough right? Yeah, it does! But, sadly, it rarely was.
The first company we were assigned was okay. But they caused me enough frustration that I asked my VP of Ops if we could change companies. BIG MISTAKE. The other company was so bad I wanted to tear my eyes out. The receptionist there was rude and a brilliant liar. She would constantly tell me that our order was being delivered and when it wasn't I would call and find out that Soren's diapers had been discontinued. Well then, how could our order possibly be en route? So after a couple months of this nonsense, I begged the VP of Ops to be changed back to the original company. The good thing about this company is they were relatively consistent and, when they weren't, they were driving distance from my house so I could go pick up stuff myself.
Fast forward to years later...three weeks ago. I called to see when we'd be getting our delivery. The supply company said they'd sent the request for the authorization to the doctor and not heard back. I told them (once again) that they didn't need to send the request to the doctor. They needed to send it to directly to MediCal. I gave them the fax number. Then, since we were nearly out of diapers, I drove to the supply company and bought a bunch to cover us until this was all cleared up and we got our delivery as I'd done many times before.
You may be asking yourself, "Hey Amy, why don't you just go to the store and buy some diapers?" Well, let me tell you. We can buy Poise pads at the store (thank goodness for bad bladder control, eh ladies?) which we have done, because for some reason Soren's order does not have an even number of diapers to pads. We can even buy the underpads or "chucks" at a store. In fact, we could get those at a pet store! But we'd never need to because for some reason our order has a crazy amount of chucks. Seriously, I think I could carpet my house with them (granted, I have a small house).
But Soren is in that sweet spot where he's too big for children's diapers and too small for adult diapers. So getting them from a store is a no go. We have to get them from this supply company. And if we don't...well...things would be very messy at our house. Yet, whenever I tell the guy at the supply company that I'm coming to purchase a case of diapers, he seems surprised. "Are you sure? That will be expensive." Oh, but the alternative is so much more expensive, sir. So much more.
After picking up the diapers, being a busy mom, I forgot about the diaper delivery for a week and then called saying, "Hey, when are those supplies being delivered?" They then said they sent another form to the doctor. This is when I got cranky, telling them that they didn't need to send a form to the doctor. That I told them that a week ago. They said this was a different form. This was a yearly form and they needed it filled out. I was pretty confident these guys were wrong again. And this is when diplomacy went out the window, cause I told them that I thought they were wrong. But in the event that they weren't, which I doubted, since I'd fixed the last problem, why didn't they call me and ask for my help? Didn't they want this form filled out? Didn't they want the money for these diapers? Wouldn't it behoove them to move this forward? I told them that, as usual, I would take care of this and get things sorted out. In other words, I would do their job. Yeah, I said that to them. Again, not diplomatic of me, I know. I then tried to contact my VP of Op, but she wasn't available. So I took the next logical step and I tried to make an appointment for Soren to see the doctor.
One problem was that the supply company had sent the form to the wrong doctor. Now this wasn't entirely their fault. MediCal had switched Soren's doctor, which is something they like to do. So it was no wonder they weren't getting a response. Since Soren doesn't really see the MediCal doctor, I didn't really care what doctor we went to see. I just needed to get this done. I explained the situation with the form and the diapers to the receptionist, but they didn't have an appointment for a week. I understood. I was calling at the last minute. Beggars can't be choosers. Desperate, I was going to go purchase more diapers from the supply company that I just yelled at when the doctor's office called back. They had a cancelation. They could see Soren that day! The trouble was it would be cutting it close with when I needed to pick up Moira. But desperate for diapers, I decided to go for it!
I showed up early, filled out the medical history paperwork, and then waited. And waited. And waited. We were early, but everyone else was taking forever. Ugh. Once we got in the exam room, it was really fast. I explained the whole thing to the doctor. That we actually didn't really go to this office. We just needed him to fill out this paperwork so Soren could get his supplies. The doctor thought it was rather silly that we couldn't go to Soren's regular pediatrician, which I totally agreed with, but whatcha gonna do? The doctor filled out the form and set us free! Whoopee! (We were about 10 minutes late picking up Moira, but she survived.)
The next day I put on a big smile, took the form personally to the supply company, and picked up the diapers. Yay! Awesome! Done!
But then yesterday, a delivery guy showed up with another delivery for us. I guessed this was to make up for the almost 2 months without supplies. And since I'm never one to refuse free diapers, I was happy to see him. But then I looked and the delivery was 90% wrong! What the heck? It had pull-ups instead of diapers. Wrong. And thin pads instead of ultra pads. Wrong. I sent back the pull-ups. I didn't register the thin pads until later. Ugh.
So today I drove on down today to exchange the pads. That went smooth as silk. Then I mentioned the pull-ups/diaper mix up. Well, this sent them into a tailspin. Twenty minutes later, the first kind fellow said that the order that I picked up last week was the order I paid for. I sighed. Um, no it wasn't. "Yes it was," he insisted.
One thing that really bugs me is when people try to tell me something happened in my life that I know for a fact didn't happen. Dude, we both were there. But since you don't remember, I will take you through it step-by-step until you remember. So I did. I told him about STEP 1: The Authorization. That's when I came in and paid for the diapers. STEP 2: The Doctor's Form. That's when I brought the form in and handed it TO THIS GUY and then he PERSONALLY loaded the boxes into my car. Oh yeah!!! He remembered!!!
So this fellow disappeared for another twenty minutes or so. Next thing I knew some other guy came out saying that they couldn't fulfill the order because he just found out that Soren had primary insurance from Blue Cross and he didn't have a denial letter from Blue Cross. Okay now people, Soren has had primary insurance from Blue Cross since birth. Actually, we were covered under Blue Cross before Soren even existed. It was a pre-existing insurance!
But today, when I arrive, this guy looks on his computer and sees that a) Soren suddenly has Blue Cross and b) he's spoken to someone from Blue Cross and NO RECORDS OF DENIAL FOR THE INCONTINENCE SUPPLIES HAVE EVER EXISTED! So, because of this newfound information, he has to write Blue Cross a letter of request for said supplies. Then they have to wait for a letter of denial. And until they got that, they could not fulfill this order.
Ok, remember how I just wrote that it really bugs me when people try to tell me things happened that didn't happen? Well, by that same token, it also bugs me when people try to tell me that things are true that I know are untrue.
But I kept it together and told him what I was yelling inside my head. But it did this all in a very calm, cool, and collected voice. I told him that delivery guy showed up on my doorstep yesterday with the wrong supplies. I came there, just trying to correct their mistake. We've had Blue Cross forever. It's unfortunate that the computer system didn't indicate that. As for the letter of denial, I informed him that I was quite confident that I had one in my Incontinence Supplies Folder (I didn't want to be too cocky in case it wasn't where I thought it was) and I would happily fax it to him when I got home.
And because I did not yell or break into tears or read him the riot act, do you know what happened? Fifteen minutes later, he appeared with 2 cases of diapers! Just in case this whole approval thing took a little longer! So I got the supplies from last week AND then a full order this week!
And you know what else? That letter of denial was exactly where I thought it was! I faxed it right to the guy within ten minutes, as promised. Once again, they had a problem and I supplied the solution.
So while I am trying my very best to reinstate diplomacy, it is challenging. Especially since this supply company is perfectly situated between a police station and my favorite fried chicken restaurant, Dinah's Chicken. The real miracle is that I didn't end up in jail or with a bucket of crispy chicken all to myself.
Amy
But let me catch you up as to why I've become a major cranky pants that resorts to yelling at people over the phone and telling them what for. Soren was born in 2003. Like any parents of a baby, we paid for his diapers. However when it became clear that potty training wasn't going to be an option for our boy, diapering/incontinence supplies started being subsidized. Now, I'm a little fuzzy as to when this started. But according to my records, it's at least 2010. All we needed was a prescription from Soren's pediatrician. Yippee! However, our primary insurance through Aaron's work doesn't cover incontinence supplies. Boo. But Soren has "medically necessary" MediCal and they cover incontinence supplies. Like any secondary, they need a letter of denial from the primary. I have one such letter from 2011 that I keep in The Incontinence Supplies File. That letter of denial means that we've been accepted to the World of Free Diapers, Pads and Underpads. And in the expensive world of a child with disabilities, that means a lot.
A wonderful company called Shield Healthcare used to provide Soren's supplies. They'd deliver every month like clockwork. Authorizations only had to be procured once a year. And while I'm sure I'm remembering this much rosier than reality, I really do think they were awesome. Then MediCal changed stuff around and Soren's new coverage didn't work with Shield (no idea why).
A new supplier was assigned. Hoops had to be jumped through. The prescription from his pediatrician that had seen Soren since birth and new his entire medical history no longer worked anymore. That would be too logical! I had to take Soren to a MediCal doctor to prove that Soren was disabled so the doctor could sign a form saying Soren needed these supplies. Under the new system, the supplier had to get authorizations every 3 months or so. And you know what that meant? A delay in delivering diapers! Do you know what a delay in delivering diapers means? A really tense mom!
Since I was still at the beginning of this journey, I got things done quickly and made friends with a lovely VP of Operations at MediCal who gave Soren a standing authorization. The supply company just had to fax the request and the authorization would be sent right to them. Sounds simple enough right? Yeah, it does! But, sadly, it rarely was.
The first company we were assigned was okay. But they caused me enough frustration that I asked my VP of Ops if we could change companies. BIG MISTAKE. The other company was so bad I wanted to tear my eyes out. The receptionist there was rude and a brilliant liar. She would constantly tell me that our order was being delivered and when it wasn't I would call and find out that Soren's diapers had been discontinued. Well then, how could our order possibly be en route? So after a couple months of this nonsense, I begged the VP of Ops to be changed back to the original company. The good thing about this company is they were relatively consistent and, when they weren't, they were driving distance from my house so I could go pick up stuff myself.
Fast forward to years later...three weeks ago. I called to see when we'd be getting our delivery. The supply company said they'd sent the request for the authorization to the doctor and not heard back. I told them (once again) that they didn't need to send the request to the doctor. They needed to send it to directly to MediCal. I gave them the fax number. Then, since we were nearly out of diapers, I drove to the supply company and bought a bunch to cover us until this was all cleared up and we got our delivery as I'd done many times before.
You may be asking yourself, "Hey Amy, why don't you just go to the store and buy some diapers?" Well, let me tell you. We can buy Poise pads at the store (thank goodness for bad bladder control, eh ladies?) which we have done, because for some reason Soren's order does not have an even number of diapers to pads. We can even buy the underpads or "chucks" at a store. In fact, we could get those at a pet store! But we'd never need to because for some reason our order has a crazy amount of chucks. Seriously, I think I could carpet my house with them (granted, I have a small house).
But Soren is in that sweet spot where he's too big for children's diapers and too small for adult diapers. So getting them from a store is a no go. We have to get them from this supply company. And if we don't...well...things would be very messy at our house. Yet, whenever I tell the guy at the supply company that I'm coming to purchase a case of diapers, he seems surprised. "Are you sure? That will be expensive." Oh, but the alternative is so much more expensive, sir. So much more.
After picking up the diapers, being a busy mom, I forgot about the diaper delivery for a week and then called saying, "Hey, when are those supplies being delivered?" They then said they sent another form to the doctor. This is when I got cranky, telling them that they didn't need to send a form to the doctor. That I told them that a week ago. They said this was a different form. This was a yearly form and they needed it filled out. I was pretty confident these guys were wrong again. And this is when diplomacy went out the window, cause I told them that I thought they were wrong. But in the event that they weren't, which I doubted, since I'd fixed the last problem, why didn't they call me and ask for my help? Didn't they want this form filled out? Didn't they want the money for these diapers? Wouldn't it behoove them to move this forward? I told them that, as usual, I would take care of this and get things sorted out. In other words, I would do their job. Yeah, I said that to them. Again, not diplomatic of me, I know. I then tried to contact my VP of Op, but she wasn't available. So I took the next logical step and I tried to make an appointment for Soren to see the doctor.
One problem was that the supply company had sent the form to the wrong doctor. Now this wasn't entirely their fault. MediCal had switched Soren's doctor, which is something they like to do. So it was no wonder they weren't getting a response. Since Soren doesn't really see the MediCal doctor, I didn't really care what doctor we went to see. I just needed to get this done. I explained the situation with the form and the diapers to the receptionist, but they didn't have an appointment for a week. I understood. I was calling at the last minute. Beggars can't be choosers. Desperate, I was going to go purchase more diapers from the supply company that I just yelled at when the doctor's office called back. They had a cancelation. They could see Soren that day! The trouble was it would be cutting it close with when I needed to pick up Moira. But desperate for diapers, I decided to go for it!
I showed up early, filled out the medical history paperwork, and then waited. And waited. And waited. We were early, but everyone else was taking forever. Ugh. Once we got in the exam room, it was really fast. I explained the whole thing to the doctor. That we actually didn't really go to this office. We just needed him to fill out this paperwork so Soren could get his supplies. The doctor thought it was rather silly that we couldn't go to Soren's regular pediatrician, which I totally agreed with, but whatcha gonna do? The doctor filled out the form and set us free! Whoopee! (We were about 10 minutes late picking up Moira, but she survived.)
The next day I put on a big smile, took the form personally to the supply company, and picked up the diapers. Yay! Awesome! Done!
But then yesterday, a delivery guy showed up with another delivery for us. I guessed this was to make up for the almost 2 months without supplies. And since I'm never one to refuse free diapers, I was happy to see him. But then I looked and the delivery was 90% wrong! What the heck? It had pull-ups instead of diapers. Wrong. And thin pads instead of ultra pads. Wrong. I sent back the pull-ups. I didn't register the thin pads until later. Ugh.
So today I drove on down today to exchange the pads. That went smooth as silk. Then I mentioned the pull-ups/diaper mix up. Well, this sent them into a tailspin. Twenty minutes later, the first kind fellow said that the order that I picked up last week was the order I paid for. I sighed. Um, no it wasn't. "Yes it was," he insisted.
One thing that really bugs me is when people try to tell me something happened in my life that I know for a fact didn't happen. Dude, we both were there. But since you don't remember, I will take you through it step-by-step until you remember. So I did. I told him about STEP 1: The Authorization. That's when I came in and paid for the diapers. STEP 2: The Doctor's Form. That's when I brought the form in and handed it TO THIS GUY and then he PERSONALLY loaded the boxes into my car. Oh yeah!!! He remembered!!!
So this fellow disappeared for another twenty minutes or so. Next thing I knew some other guy came out saying that they couldn't fulfill the order because he just found out that Soren had primary insurance from Blue Cross and he didn't have a denial letter from Blue Cross. Okay now people, Soren has had primary insurance from Blue Cross since birth. Actually, we were covered under Blue Cross before Soren even existed. It was a pre-existing insurance!
But today, when I arrive, this guy looks on his computer and sees that a) Soren suddenly has Blue Cross and b) he's spoken to someone from Blue Cross and NO RECORDS OF DENIAL FOR THE INCONTINENCE SUPPLIES HAVE EVER EXISTED! So, because of this newfound information, he has to write Blue Cross a letter of request for said supplies. Then they have to wait for a letter of denial. And until they got that, they could not fulfill this order.
Ok, remember how I just wrote that it really bugs me when people try to tell me things happened that didn't happen? Well, by that same token, it also bugs me when people try to tell me that things are true that I know are untrue.
- As noted above, Soren has been covered by Blue Cross since forever.
- All medical entities involved with Soren's care have been told about this primary insurance. If they claim that they don't know this or are suddenly finding out about this from their computers by some sort of magic, it makes my brain hurt.
- This supplier claiming that there have been no letters of denial from Blue Cross is an absolute fallacy because...
- I knew for a fact that these letters exist because I HAD ONE IN A FILE IN MY HOUSE!!!
But I kept it together and told him what I was yelling inside my head. But it did this all in a very calm, cool, and collected voice. I told him that delivery guy showed up on my doorstep yesterday with the wrong supplies. I came there, just trying to correct their mistake. We've had Blue Cross forever. It's unfortunate that the computer system didn't indicate that. As for the letter of denial, I informed him that I was quite confident that I had one in my Incontinence Supplies Folder (I didn't want to be too cocky in case it wasn't where I thought it was) and I would happily fax it to him when I got home.
And because I did not yell or break into tears or read him the riot act, do you know what happened? Fifteen minutes later, he appeared with 2 cases of diapers! Just in case this whole approval thing took a little longer! So I got the supplies from last week AND then a full order this week!
And you know what else? That letter of denial was exactly where I thought it was! I faxed it right to the guy within ten minutes, as promised. Once again, they had a problem and I supplied the solution.
So while I am trying my very best to reinstate diplomacy, it is challenging. Especially since this supply company is perfectly situated between a police station and my favorite fried chicken restaurant, Dinah's Chicken. The real miracle is that I didn't end up in jail or with a bucket of crispy chicken all to myself.
Amy
Monday, September 02, 2013
A Rough Summer
I haven't written in a long time because I always want to tell you all positive news. But the thing is, Soren has had a really rough summer with his seizures. And his seizures have changed in nature, which seems to happen every couple years. It's been a frustrating, exhausting time.
We've been trying various things to try and get better control and I've been waiting to see if they'd work. We've tried:
His seizure log for the summer:
June: 19 seizures
July: 39 seizures
August: 41 seizures
I turned my desk calendar to September yesterday. Since Soren's birthday is later this month, the images for September are devoted to him. It's collage of 6 pictures of Soren from last year. Adorable images of him bright eyed and smiling. And while I've been very aware that we haven't seen Soren smile or heard him laugh in a very long time, these images really drove it home. These pictures were taken back when he was having only 3 seizures in a month. And I was so greedy then--I wanted complete seizure control. Now I would take 3 seizures a week if we could get it! Unfortunately, he's been having 3 a day all too often.
What's Soren like having all these seizures? Well, he's much more quiet. Not his usual chatty self. More serene. He listens and wants to be part of the action. He also really wants to be snuggled a lot. It's as if he's lonely.
Surprisingly, he bounces back from the seizures relatively quickly. They slam him hard, he conks out, but then he rallies.
So what's next? Well, we are continuing to try other options. The problem with intractable seizures is that they don't respond well to medicines. Soren is living proof of that. But we won't give up. We are determined to see that smile and hear that laugh again.
Amy
We've been trying various things to try and get better control and I've been waiting to see if they'd work. We've tried:
- Being regimented with his morning and evening medication timing
- Moving his evening does later so that it would last all the way into the morning (Soren tends to seize upon waking)
- Decreasing his calories on the Ketogenic Diet to make him more ketotic
- Increasing the dosage of both medicines
His seizure log for the summer:
June: 19 seizures
July: 39 seizures
August: 41 seizures
I turned my desk calendar to September yesterday. Since Soren's birthday is later this month, the images for September are devoted to him. It's collage of 6 pictures of Soren from last year. Adorable images of him bright eyed and smiling. And while I've been very aware that we haven't seen Soren smile or heard him laugh in a very long time, these images really drove it home. These pictures were taken back when he was having only 3 seizures in a month. And I was so greedy then--I wanted complete seizure control. Now I would take 3 seizures a week if we could get it! Unfortunately, he's been having 3 a day all too often.
What's Soren like having all these seizures? Well, he's much more quiet. Not his usual chatty self. More serene. He listens and wants to be part of the action. He also really wants to be snuggled a lot. It's as if he's lonely.
Surprisingly, he bounces back from the seizures relatively quickly. They slam him hard, he conks out, but then he rallies.
So what's next? Well, we are continuing to try other options. The problem with intractable seizures is that they don't respond well to medicines. Soren is living proof of that. But we won't give up. We are determined to see that smile and hear that laugh again.
Amy
Friday, June 14, 2013
At Long Last, A New Bathing System!
It's true! The new bathing system was finally delivered!
I want to thank the Lanterman Regional Center for paying $3,668 of this $4,368 bathing system. We were then going to cover the remaining $700 when our friends at the Talbert Family Foundation emailed me. They had seen my previous post on the Bathing System Saga and offered to pay for the entire system! Well, as luck would have it, this was the day after Lanterman agreed to pay their portion. So I asked Julie Talbert if they would like to pay the remaining $700. She said yes and the check immediately came in the mail! How's that for generosity?!
It then took 2 weeks to order and a couple days to build. Then the came to deliver it and we ran into a hitch. Well, of course we did! Nothing is simple, right? See, we live in a house built in the 1940's. The bathroom cabinet cuts into the bathtub in this wacky way. The way the seat was set up, Soren was supposed to be facing the shower head, but he would also be facing the cabinet. Soren has some long legs that are only getting longer. There was going to be no room for his legs in between the chair and the cabinet. So I asked for them to turn the system around so that Soren's head would be facing away from the shower head. Way easier said than done. The whole thing had to be taken away, taken apart, rebuilt and brought back. Which, of course, took another week or so.
The guy came back on Tuesday with it all reassembled. He showed me how it worked, we did adjustments, and all seemed great. I then suggested that we put Soren in the seat to do final tweaks on the seat and make sure it actually worked with his 60 pound boy in it. Well, good thing I did because while it glided smooth as silk without Soren, it was suddenly all whackadoo once this big boy was throwing things all off kilter. But the technician was great and did all the adjustments. He was very serious about making sure Soren was safe and comfortable and that I knew what I was doing before he left. I was actually impressed.
So yesterday, we took this baby out for its first run. I used the lift to get Soren to his bed, stripped him down, used the lift to get him to the bath seat, wheeled him to the bathroom, clicked him over to the tub, showered him (and got a bit of a shower myself), clicked him back over, wheeled him back to his room, and used the lift to get him back to his bed. Viola!
Now, in all honesty, it was way clunkier than than. We have a lot of kinks to work out. The transferring to and from the seat could go more smoothly. Soren seemed quite mortified through the entire process, though he wasn't fighting me, which was good. And we need to replace the shower head with a hand held one to make that part easier.
But we'll get there! After all, I'm going to have a lot of practice!
I am just so thankful to have this new system and to be figuring out this new set of challenges.
Amy
I want to thank the Lanterman Regional Center for paying $3,668 of this $4,368 bathing system. We were then going to cover the remaining $700 when our friends at the Talbert Family Foundation emailed me. They had seen my previous post on the Bathing System Saga and offered to pay for the entire system! Well, as luck would have it, this was the day after Lanterman agreed to pay their portion. So I asked Julie Talbert if they would like to pay the remaining $700. She said yes and the check immediately came in the mail! How's that for generosity?!
It then took 2 weeks to order and a couple days to build. Then the came to deliver it and we ran into a hitch. Well, of course we did! Nothing is simple, right? See, we live in a house built in the 1940's. The bathroom cabinet cuts into the bathtub in this wacky way. The way the seat was set up, Soren was supposed to be facing the shower head, but he would also be facing the cabinet. Soren has some long legs that are only getting longer. There was going to be no room for his legs in between the chair and the cabinet. So I asked for them to turn the system around so that Soren's head would be facing away from the shower head. Way easier said than done. The whole thing had to be taken away, taken apart, rebuilt and brought back. Which, of course, took another week or so.
The guy came back on Tuesday with it all reassembled. He showed me how it worked, we did adjustments, and all seemed great. I then suggested that we put Soren in the seat to do final tweaks on the seat and make sure it actually worked with his 60 pound boy in it. Well, good thing I did because while it glided smooth as silk without Soren, it was suddenly all whackadoo once this big boy was throwing things all off kilter. But the technician was great and did all the adjustments. He was very serious about making sure Soren was safe and comfortable and that I knew what I was doing before he left. I was actually impressed.
So yesterday, we took this baby out for its first run. I used the lift to get Soren to his bed, stripped him down, used the lift to get him to the bath seat, wheeled him to the bathroom, clicked him over to the tub, showered him (and got a bit of a shower myself), clicked him back over, wheeled him back to his room, and used the lift to get him back to his bed. Viola!
Now, in all honesty, it was way clunkier than than. We have a lot of kinks to work out. The transferring to and from the seat could go more smoothly. Soren seemed quite mortified through the entire process, though he wasn't fighting me, which was good. And we need to replace the shower head with a hand held one to make that part easier.
But we'll get there! After all, I'm going to have a lot of practice!
I am just so thankful to have this new system and to be figuring out this new set of challenges.
Amy
Thursday, April 11, 2013
The Bathing System Saga
Okay, before I get into the Saga of the Bathing System, let me update you on Soren.
It's been over a month since I last wrote. At that time, Soren was having some big problems with daily seizures. We tried some stuff that really didn't seem to work and then all of the sudden, Soren's seizures normalized to just 1 per week.
But before we got too cocky, they came back. Most of March and early April he was having daily seizures. During Spring Break, Soren was in a great mood one day, but then had a seizure one evening and another the next morning. He was wiped out and cranky the rest of the day (not that I blame him). That "double whammy" really took its toll.
I increased his morning meds a couple weeks ago and have now increased his evening meds, so I'm crossing my fingers that this helps. In between the seizures, he's such a happy, engaged, silly boy. And if the seizures are small enough, he's bouncing back quickly. We'd just really like to finally get rid of these things.
Now, onto the bathing system. Soren cannot sit up alone in the tub, so he has a Rifton bath seat which has done us well for the past 8 years (seriously, he got it when he was 2). With this seat, I lift Soren from our bed to the bathroom, put him on the seat, bathe him, lift him again, and put him back on the bed. Now, this is all well and good when you're dealing with a little boy. However, 3 years ago, Soren started getting big and I'm only a wee 5 feet tall.
So, in 2011, we started working on getting a bathing system. After doing research, we decided we needed a system where I could use our Liko Lift to put Soren on a bathing seat that's on wheels, roll him into the bathroom, click the seat over into the tub, bathe him, click him back, and then use the lift to move him again once he was dry and ready.
We picked one out, submitted it to our insurance, they approved it, and the seat was delivered. Only one problem. The seat didn't work in our bathroom! Our tub is blocked a bit by the cabinet and, ugh, it just didn't work. So they took it away and I did more research. There was one piece on that chair that was causing problems. So I found another that didn't have this piece.
Once again, we submitted to our insurance. But, in the time between Seat 1 and Seat 2, our insurance changed the rules on Durable Medical Equipment (DME). They no longer considered bathing systems for the disabled DME. I have no idea what a bathing system is if it isn't that. But, nonetheless, we were denied.
Because he is severely disabled, Soren has MediCal. So, the next step was applying to MediCal to see if they would cover the seat. (Keep in ming that this seat is priced at $3,689.) But MediCal is hardly in any rush to approve such things. In fact, they wanted me to apply to CCS (California Children's Services) to pay for it instead. The only hitch with this is that Soren's CCS case had been closed about 3 years earlier because he'd "aged out" or something (I'm not sure, I'm constantly baffled).
But MediCal insisted, so I persisted. I finally got CCS to reopen Soren's case. I had to give them Soren's most up-to-date information, which includes his medical diagnosis. Well, this can be a bit of a problem. Soren's got a lot of things going on. I consider his biggest problem to be Epilepsy, but CCS does not consider a seizure disorder as a worthy condition to warrant medical equipment. Never mind that it's the seizures that have caused his global developmental delay. They want big flashy diagnoses like Cerebral Palsy and Autism. Well, as luck would have it, Soren also has these on his list of diagnosis, so I gave them the doctors' reports and hoped for the best.
Unfortunately, after lots of hemming and hawing, CCS denied Soren this piece of equipment. So, I went back to MediCal and told them that Soren had been denied. "Why?" they asked. I explained that, as far as I understood, it was because his diagnosis didn't fit the bill. "Why?" they asked. "I don't know," I replied truly not knowing why but knowing that I just wanted to move forward with this.
By now, I'd actually developed a nice relationship with the Manager at MediCal. She was also helping me deal with the monthly denial letters I was getting from MediCal for Soren's incontinence/diapering supplies. Thanks to her efforts, she made sure that I didn't have to wrap Soren's behind in old rags by putting the right information into the computer so that we got an automatic approval.
So, she pushed the paperwork through and got us an approval for the bathing system. Huzzah! After 2 1/2 years the nightmare was about to end! My back would be saved! All would be right with the world! Except...that didn't happen. When they delivered the bath seat, it was the kind that sits in the tub for old people. You know, just a plastic and metal chair? Before they guy could even take the plastic off, I told him to put it back in the car. I wasn't accepting it. I then called the Manager. She said she'd gotten a note that I'd refused the seat. I admitted this was true. Soren could never use this seat. Soren cannot step into a tub and sit in a seat. I wish he could! But sadly, this was not the seat we were looking for.
I re-sent her the information on the seat that we wanted. She saw the price tag of $3,689 and realized that this item was WAY out of MediCal's allotted amount. (I think the seat they sent was $150.) I was so bummed. I thought I was close to the finish line, but it got moved on me yet again.
Now, at many points during this over 2 year ordeal, my husband (seeing my immense frustration and listening to my manic rants) suggested that we save up the money and buy the seat ourselves. But I was in too deep by this point. I'd written too many letters, made too many calls, and harassed too many doctors. And it wasn't like I was asking for the moon. This is an item that is medically necessary for my severely disabled kid!
In fact, Soren has a friend that got the exact seat we were asking for right away--no hassle--from CCS. The difference is the diagnosis. This boy's diagnosis fits their magic criteria. But if these people actually met Soren, they'd see that he is much more disabled. He just doesn't have the appropriate diagnosis to match.
But I wasn't ready to give up. I was going to get this chair! And I had one more option: The Regional Center.
In California, there is an agency called the Regional Center that supports children and adults with developmental disabilities. Soren has been with the Lanterman Regional Center since he was a baby and they have provided amazing things for him. Therapies, camps, equipment, and they even helped pay for our ramp van. Way back when this bath seat saga started, I asked Soren's Case Manager if the Lanterman could pay for the chair. She said she could submit the paperwork and see. The only problem was, Lanterman is the last resort in these cases. I had to have letters of denial from every other possible source before I could submit my request.
So, when the Manager at MediCal said that they couldn't pay for the seat, I excitedly said, "Fine! Can I just get a letter of denial? That's ALL I need!" I think she must have heard that I was at my wit's end (and she was probably sick of talking to me). I got the letter the next week.
I submitted a pile of paperwork to Lanterman. By now I had acquired a letter from Soren's pediatrician and a letter from his neurologist, both stating why this piece of equipment was necessary. (Originally I only had the letter from the pediatrician, which should have sufficed. But either MediCal or CCS requested a letter from the neurologist, which is rather unusual.) I had the letter of denial from our insurance, CCS, and now MediCal. I had info on the piece of equipment with the price. I sent it in and at the end of 2012, I was told it was approved! Huzzah! Happy dancing all around!
But it's never that simple. Soren's Case Manager said that a Rep from the equipment company that they worked with needed to come out and assess if this was the best seat for Soren. I was totally fine with that. Anything to move this forward. However, in doing that, we discovered that the Omni seat that I had so desperately been pining for wasn't actually the best seat for Soren. The Rep recommended another seat. It positioned Soren much more safely, so even though it's the ugliest piece of medical equipment I've ever seen, we had the Rep submit the quote for that piece. The trouble is, it was MORE expensive! It came in at a whopping $4,875!
Well, then Lanterman had to get some other companies to give quotes. Which means I had to schedule another visit with another vendor--who didn't show up during his allotted time. (I'm a busy lady, people! And he was actually busy with another client. But still.) But he did come in with a cheaper quote, bringing the price down to $4,368.
Now, remember, the price for the original, approved seat was $3,689. The price difference is $679. And Lanterman was now questioning whether to pay for the seat at all. They want to know why it's this seat instead of the other seat. I noted that it's not because it's visually pleasing. It's because it's safer and more appropriate for my kid. So I proposed that if they cover the amount that was already approved, we'd cover the difference. That sounds fair, right?
Currently, I am waiting for the answer to this proposal. Soren is currently 9 1/2 years old, approximately 52" and 54 lbs. I'm optimistic that we will get this seat before he outgrows me. Hopefully this saga will soon be over and we will finally have this Bathing System!
Amy
It's been over a month since I last wrote. At that time, Soren was having some big problems with daily seizures. We tried some stuff that really didn't seem to work and then all of the sudden, Soren's seizures normalized to just 1 per week.
But before we got too cocky, they came back. Most of March and early April he was having daily seizures. During Spring Break, Soren was in a great mood one day, but then had a seizure one evening and another the next morning. He was wiped out and cranky the rest of the day (not that I blame him). That "double whammy" really took its toll.
I increased his morning meds a couple weeks ago and have now increased his evening meds, so I'm crossing my fingers that this helps. In between the seizures, he's such a happy, engaged, silly boy. And if the seizures are small enough, he's bouncing back quickly. We'd just really like to finally get rid of these things.
Now, onto the bathing system. Soren cannot sit up alone in the tub, so he has a Rifton bath seat which has done us well for the past 8 years (seriously, he got it when he was 2). With this seat, I lift Soren from our bed to the bathroom, put him on the seat, bathe him, lift him again, and put him back on the bed. Now, this is all well and good when you're dealing with a little boy. However, 3 years ago, Soren started getting big and I'm only a wee 5 feet tall.
So, in 2011, we started working on getting a bathing system. After doing research, we decided we needed a system where I could use our Liko Lift to put Soren on a bathing seat that's on wheels, roll him into the bathroom, click the seat over into the tub, bathe him, click him back, and then use the lift to move him again once he was dry and ready.
We picked one out, submitted it to our insurance, they approved it, and the seat was delivered. Only one problem. The seat didn't work in our bathroom! Our tub is blocked a bit by the cabinet and, ugh, it just didn't work. So they took it away and I did more research. There was one piece on that chair that was causing problems. So I found another that didn't have this piece.
Once again, we submitted to our insurance. But, in the time between Seat 1 and Seat 2, our insurance changed the rules on Durable Medical Equipment (DME). They no longer considered bathing systems for the disabled DME. I have no idea what a bathing system is if it isn't that. But, nonetheless, we were denied.
Because he is severely disabled, Soren has MediCal. So, the next step was applying to MediCal to see if they would cover the seat. (Keep in ming that this seat is priced at $3,689.) But MediCal is hardly in any rush to approve such things. In fact, they wanted me to apply to CCS (California Children's Services) to pay for it instead. The only hitch with this is that Soren's CCS case had been closed about 3 years earlier because he'd "aged out" or something (I'm not sure, I'm constantly baffled).
But MediCal insisted, so I persisted. I finally got CCS to reopen Soren's case. I had to give them Soren's most up-to-date information, which includes his medical diagnosis. Well, this can be a bit of a problem. Soren's got a lot of things going on. I consider his biggest problem to be Epilepsy, but CCS does not consider a seizure disorder as a worthy condition to warrant medical equipment. Never mind that it's the seizures that have caused his global developmental delay. They want big flashy diagnoses like Cerebral Palsy and Autism. Well, as luck would have it, Soren also has these on his list of diagnosis, so I gave them the doctors' reports and hoped for the best.
Unfortunately, after lots of hemming and hawing, CCS denied Soren this piece of equipment. So, I went back to MediCal and told them that Soren had been denied. "Why?" they asked. I explained that, as far as I understood, it was because his diagnosis didn't fit the bill. "Why?" they asked. "I don't know," I replied truly not knowing why but knowing that I just wanted to move forward with this.
By now, I'd actually developed a nice relationship with the Manager at MediCal. She was also helping me deal with the monthly denial letters I was getting from MediCal for Soren's incontinence/diapering supplies. Thanks to her efforts, she made sure that I didn't have to wrap Soren's behind in old rags by putting the right information into the computer so that we got an automatic approval.
So, she pushed the paperwork through and got us an approval for the bathing system. Huzzah! After 2 1/2 years the nightmare was about to end! My back would be saved! All would be right with the world! Except...that didn't happen. When they delivered the bath seat, it was the kind that sits in the tub for old people. You know, just a plastic and metal chair? Before they guy could even take the plastic off, I told him to put it back in the car. I wasn't accepting it. I then called the Manager. She said she'd gotten a note that I'd refused the seat. I admitted this was true. Soren could never use this seat. Soren cannot step into a tub and sit in a seat. I wish he could! But sadly, this was not the seat we were looking for.
I re-sent her the information on the seat that we wanted. She saw the price tag of $3,689 and realized that this item was WAY out of MediCal's allotted amount. (I think the seat they sent was $150.) I was so bummed. I thought I was close to the finish line, but it got moved on me yet again.
Now, at many points during this over 2 year ordeal, my husband (seeing my immense frustration and listening to my manic rants) suggested that we save up the money and buy the seat ourselves. But I was in too deep by this point. I'd written too many letters, made too many calls, and harassed too many doctors. And it wasn't like I was asking for the moon. This is an item that is medically necessary for my severely disabled kid!
In fact, Soren has a friend that got the exact seat we were asking for right away--no hassle--from CCS. The difference is the diagnosis. This boy's diagnosis fits their magic criteria. But if these people actually met Soren, they'd see that he is much more disabled. He just doesn't have the appropriate diagnosis to match.
But I wasn't ready to give up. I was going to get this chair! And I had one more option: The Regional Center.
In California, there is an agency called the Regional Center that supports children and adults with developmental disabilities. Soren has been with the Lanterman Regional Center since he was a baby and they have provided amazing things for him. Therapies, camps, equipment, and they even helped pay for our ramp van. Way back when this bath seat saga started, I asked Soren's Case Manager if the Lanterman could pay for the chair. She said she could submit the paperwork and see. The only problem was, Lanterman is the last resort in these cases. I had to have letters of denial from every other possible source before I could submit my request.
So, when the Manager at MediCal said that they couldn't pay for the seat, I excitedly said, "Fine! Can I just get a letter of denial? That's ALL I need!" I think she must have heard that I was at my wit's end (and she was probably sick of talking to me). I got the letter the next week.
I submitted a pile of paperwork to Lanterman. By now I had acquired a letter from Soren's pediatrician and a letter from his neurologist, both stating why this piece of equipment was necessary. (Originally I only had the letter from the pediatrician, which should have sufficed. But either MediCal or CCS requested a letter from the neurologist, which is rather unusual.) I had the letter of denial from our insurance, CCS, and now MediCal. I had info on the piece of equipment with the price. I sent it in and at the end of 2012, I was told it was approved! Huzzah! Happy dancing all around!
But it's never that simple. Soren's Case Manager said that a Rep from the equipment company that they worked with needed to come out and assess if this was the best seat for Soren. I was totally fine with that. Anything to move this forward. However, in doing that, we discovered that the Omni seat that I had so desperately been pining for wasn't actually the best seat for Soren. The Rep recommended another seat. It positioned Soren much more safely, so even though it's the ugliest piece of medical equipment I've ever seen, we had the Rep submit the quote for that piece. The trouble is, it was MORE expensive! It came in at a whopping $4,875!
Well, then Lanterman had to get some other companies to give quotes. Which means I had to schedule another visit with another vendor--who didn't show up during his allotted time. (I'm a busy lady, people! And he was actually busy with another client. But still.) But he did come in with a cheaper quote, bringing the price down to $4,368.
Now, remember, the price for the original, approved seat was $3,689. The price difference is $679. And Lanterman was now questioning whether to pay for the seat at all. They want to know why it's this seat instead of the other seat. I noted that it's not because it's visually pleasing. It's because it's safer and more appropriate for my kid. So I proposed that if they cover the amount that was already approved, we'd cover the difference. That sounds fair, right?
Currently, I am waiting for the answer to this proposal. Soren is currently 9 1/2 years old, approximately 52" and 54 lbs. I'm optimistic that we will get this seat before he outgrows me. Hopefully this saga will soon be over and we will finally have this Bathing System!
Amy
Monday, February 04, 2013
Troubled Waters
Soren has had a really rough start of the year. For some inexplicable reason his seizures have increased greatly. We'd gotten him down to 3 per month. But in January he had 16 and so far in February he's already had 10!
When I saw that things were increasing, we went to see his neurologist in January. We did a little adjustment of his meds in the hope that it would control things better. But instead, the nature of his seizures seem to be changing. Usually he has Tonic-Clonic (aka Grand Mal) seizures that last about 4 minutes. For those of you not versed in seizure terminology, here is the definition of a Tonic-Clonic from the Epilepsy Foundation:
Generalized tonic-clonic seizures are the most common and the best known type of generalized seizure. They begin with stiffening of the limbs (the tonic phase), followed by jerking of the limbs and face (the clonic phase).
During the tonic phase, breathing may decrease or cease altogether, producing cyanosis (turning blue) of lips, nail beds, and face. Breathing typically returns during the clonic (jerking) phase, but it may be irregular. The clonic phase usually lasts less than a minute.
As you can tell from the description, they are rather horrible. But now Soren is having lots of quick Tonic (stiffening) seizures that last about 2 seconds. These are less scary to watch and are over in a flash. With Tonic-Clonics, Soren passes out for a long time afterwards. With the Clonics, he's bouncing back quicker and seems less out of sorts.
I only recently did the last adjustment on his meds, so I am trying to be patient. But this is difficult when it's my child that is suffering through the process.
We have another appointment next Monday so hopefully we'll come up with different mode of action if things are still not going well.
Amy
When I saw that things were increasing, we went to see his neurologist in January. We did a little adjustment of his meds in the hope that it would control things better. But instead, the nature of his seizures seem to be changing. Usually he has Tonic-Clonic (aka Grand Mal) seizures that last about 4 minutes. For those of you not versed in seizure terminology, here is the definition of a Tonic-Clonic from the Epilepsy Foundation:
Generalized tonic-clonic seizures are the most common and the best known type of generalized seizure. They begin with stiffening of the limbs (the tonic phase), followed by jerking of the limbs and face (the clonic phase).
During the tonic phase, breathing may decrease or cease altogether, producing cyanosis (turning blue) of lips, nail beds, and face. Breathing typically returns during the clonic (jerking) phase, but it may be irregular. The clonic phase usually lasts less than a minute.
As you can tell from the description, they are rather horrible. But now Soren is having lots of quick Tonic (stiffening) seizures that last about 2 seconds. These are less scary to watch and are over in a flash. With Tonic-Clonics, Soren passes out for a long time afterwards. With the Clonics, he's bouncing back quicker and seems less out of sorts.
I only recently did the last adjustment on his meds, so I am trying to be patient. But this is difficult when it's my child that is suffering through the process.
We have another appointment next Monday so hopefully we'll come up with different mode of action if things are still not going well.
Amy
Wednesday, January 09, 2013
Social Skills Group
Once a week Soren goes to Social Skills Group. The purpose of the group as a whole is for these boys to socially interact with each other, take turns, share, and make choices together.
For the past year it's been Soren and two other boys who are a little older than him. These two boys also have developmental disabilities, but overall are able to communicate much better than Soren. They can do some sign language, give verbal cues, and are both really good with assistive devices like iPads and DynaVox.
Soren was the third boy to come to this group. Because the other two boys knew each other, it took a little bit for Soren to find his groove. Soren can be a bit of a stinker and pretend to fall asleep when things aren't interesting. And the other boys made it a point to try and wake him up! Soon enough Soren stopped playing possum and started participating.
I brought Soren's iPad in so that he could "tell them" his Soren Update by touching the iPad and activate my pre-recorded voice. From what I've heard, this is one of Soren's favorite activities during SSG.
Now, juggling the needs of 3 disabled boys must be challenging for these two therapists. These boys can be pretty demanding. When the other parents and I return to class, I'm constantly impressed with the updates on what they did during their hour together.
Because of Winter Break, Soren had 2 weeks off from his Social Skills Group. And I think he was really missing it. 3 days before school started again, Soren started getting really cranky. As much as we tried to do fun stuff, I think he was missing his routine of school and seeing his friends.
Yesterday afternoon I got an email from Soren's teacher saying that Soren had a great day at school. He was alert and focused. I was really happy about this, but then feared he'd be exhausted for SSG. I kept briefing Soren, saying that we were going to go see his friends. And when I wheeled him in, Soren was bright-eyed and smiling.
And to my surprise, there was a new boy in the group. This boy had a huge smile and if Soren's in the right mood, he responds really well to this energy (much like all of us). I worried a bit for the therapists now trying to manage 4 boys, but I figured they'd come get us if there was a problem.
Well, when we came back, those boys were all in a great mood. Soren smiled and laughed through the entire session. The therapists noted that it was actually easier having this new boy in the mix. It's like he balanced the group out. And Soren took to him, so he's clearly a good egg!
On the way home, Soren chatted away in his "Soren Speak" and though I don't understand a word, I know he had a good time. Through Soren's visual cues, it was clear that he considers these boys his friends. He missed them when they were gone and was happy to see them again. And he got to add another friend to the group which clearly made his day.
For the past year it's been Soren and two other boys who are a little older than him. These two boys also have developmental disabilities, but overall are able to communicate much better than Soren. They can do some sign language, give verbal cues, and are both really good with assistive devices like iPads and DynaVox.
Soren was the third boy to come to this group. Because the other two boys knew each other, it took a little bit for Soren to find his groove. Soren can be a bit of a stinker and pretend to fall asleep when things aren't interesting. And the other boys made it a point to try and wake him up! Soon enough Soren stopped playing possum and started participating.
I brought Soren's iPad in so that he could "tell them" his Soren Update by touching the iPad and activate my pre-recorded voice. From what I've heard, this is one of Soren's favorite activities during SSG.
Now, juggling the needs of 3 disabled boys must be challenging for these two therapists. These boys can be pretty demanding. When the other parents and I return to class, I'm constantly impressed with the updates on what they did during their hour together.
Because of Winter Break, Soren had 2 weeks off from his Social Skills Group. And I think he was really missing it. 3 days before school started again, Soren started getting really cranky. As much as we tried to do fun stuff, I think he was missing his routine of school and seeing his friends.
Yesterday afternoon I got an email from Soren's teacher saying that Soren had a great day at school. He was alert and focused. I was really happy about this, but then feared he'd be exhausted for SSG. I kept briefing Soren, saying that we were going to go see his friends. And when I wheeled him in, Soren was bright-eyed and smiling.
And to my surprise, there was a new boy in the group. This boy had a huge smile and if Soren's in the right mood, he responds really well to this energy (much like all of us). I worried a bit for the therapists now trying to manage 4 boys, but I figured they'd come get us if there was a problem.
Well, when we came back, those boys were all in a great mood. Soren smiled and laughed through the entire session. The therapists noted that it was actually easier having this new boy in the mix. It's like he balanced the group out. And Soren took to him, so he's clearly a good egg!
On the way home, Soren chatted away in his "Soren Speak" and though I don't understand a word, I know he had a good time. Through Soren's visual cues, it was clear that he considers these boys his friends. He missed them when they were gone and was happy to see them again. And he got to add another friend to the group which clearly made his day.
Monday, October 08, 2012
Rough Waters
For some inexplicable reason, Soren has had an increase in seizures September and October. It's incredibly frustrating because we are doing everything right and when he's not seizing, Soren is so happy and engaged. So when the seizures hit, it feels incredibly cruel.
Often these seizures happen upon his waking up in the morning. We'll hear him cry out and he'll seize having a Tonic Clonic seizure for a good 4 minutes.
Because this was happening too often, we increased his evening dose of Lamictal last Monday after getting the okay from his neurologist. Since Soren has been on the same dose of Clobazam and Lamictal for quite a while now, it seemed logical that he might have outgrown the dose (the boy has packed on a solid 6 pounds recently).
This Saturday, Soren was happy and smiling. I was away the previous weekend so I think he was just glad to have everyone at home. That afternoon, we planned to go to a Music Festival, figuring it's something we all could enjoy. But right before we left, Soren had another massive seizure and then was wiped out. We still went to the festival. Soren just slept through most of it. And when he woke up, he looked painfully hung over. So we headed home.
I tried not to get too frustrated by the Lamictal not doing the trick yet because it needs to build up in his system. But then, after waking up smiley and babbling this morning, Soren had another big seizure. It's just the most heartbreaking thing to watch and so horrible as a parent to not be able to fix it. Before the bus picked him up, he was awake again, a much braver person than me.
So we'll continue to hope that the Lamictal will kick in. Otherwise, we will once again try something else.
Amy
Because this was happening too often, we increased his evening dose of Lamictal last Monday after getting the okay from his neurologist. Since Soren has been on the same dose of Clobazam and Lamictal for quite a while now, it seemed logical that he might have outgrown the dose (the boy has packed on a solid 6 pounds recently).
This Saturday, Soren was happy and smiling. I was away the previous weekend so I think he was just glad to have everyone at home. That afternoon, we planned to go to a Music Festival, figuring it's something we all could enjoy. But right before we left, Soren had another massive seizure and then was wiped out. We still went to the festival. Soren just slept through most of it. And when he woke up, he looked painfully hung over. So we headed home.
I tried not to get too frustrated by the Lamictal not doing the trick yet because it needs to build up in his system. But then, after waking up smiley and babbling this morning, Soren had another big seizure. It's just the most heartbreaking thing to watch and so horrible as a parent to not be able to fix it. Before the bus picked him up, he was awake again, a much braver person than me.
So we'll continue to hope that the Lamictal will kick in. Otherwise, we will once again try something else.
Amy
Sunday, August 12, 2012
CommuniCamp
The past two weeks, Soren attended a day camp called CommuniCamp. It's for non-verbal "kids" (ages ranged from 5-24) to help teach them how (or build upon their existing skills) to communicate with iPads and Talkers (switch activated recording devices).
It was truly remarkable. There were a variety of kids in there with serious developmental disabilities. In the past, I'm sure it would have been easy to just "write them off" figuring they have nothing to say. But these kids understand far more than folks give them credit for. It's just that they are fighting through other challenges their bodies have given them--sensitivity to noise, stimming (uncontrollable repetitive body movement), spasticity or hypertonia, and seizures. Despite all these challenges, a lot of their brains are quite "in tact."
And through the hard work of these kids' parents, teachers, and therapists, these kids have developed ways to communicate that were truly inspiring.
One young woman has a talker that she wears around her neck. She can page through the selections and ask questions or give answers. Two campers are able to activate a switch on a Talker with their foot to answer questions. Two others can activate their iPad via a head switch.
The two teachers at camp--Robbie and Cindy--took the skills that these kids had and built upon them in these intensive sessions from 9:30-2:00. The kids were never talked down to and they were asked to push themselves. And every kid delivered.
They did a variety of activities. Challenging games like "Minute to Win It" where a timer was started by one child and then another child had to see how many times he or she could press a "counting button" before the buzzer went off.
There was also "The Amazing Valenti." Here kids were able to show off their abilities answering questions. One young woman has a Talker that has two buttons on it--one labeled 1 and the other 2. Robbie would record two answer options for each button. For instance "Plumber" and "Florist." She would then ask the girl questions like, "Your garbage disposal is clogged. Who do you call? A Plumber or a Florist?" And despite the fact this girl seemed not to listen and appeared too distracted by all her stimming, she answered the questions right every time! She really was The Amazing Valenti!
We've been working a lot with Soren at home and at school on his iPad, trying to get him to touch the screen to activate games, turn pages, etc. And Soren has really improved on his. He did a great job during the Lemonade Stand activity activating his iPad. We recorded lots of phrases asking people to come buy lemonade. Every time Soren touched the iPad, the voice was activated and he was doing it a lot on his own. On the final day of camp, Soren performed in a play and did a fantastic job playing the Duck, hitting his iPad perfectly when he got his cue!
But I was inspired when I saw the boy at camp that had the head switch. At times, touching things with his hands is overwhelming for Soren. It can take a lot of prompting and hand over hand encouragement. And sometimes he really just wants to wring his hands or put them in his mouth.
So, at camp, we tried having him use his head to activate a switch called a Step-by-Step talker and I was really impressed at how Soren did. He did a great job in Minute to Win It using his head, counting up to 8! Now, this could have been complete coincidence or involuntary. After all, Soren moves his head around a lot. But it's one of those things that if we can work with him, we might be able to make it purposeful. We could start on a very basic level and then, if it worked, build up to getting a button that could activate his iPad.
It's a long road and these past 2 weeks only started the ball rolling. I was very inspired by all these kids that showed me that they have a lot to say. I know Soren does too. And now I know about more tools to try and help him get there.
It was truly remarkable. There were a variety of kids in there with serious developmental disabilities. In the past, I'm sure it would have been easy to just "write them off" figuring they have nothing to say. But these kids understand far more than folks give them credit for. It's just that they are fighting through other challenges their bodies have given them--sensitivity to noise, stimming (uncontrollable repetitive body movement), spasticity or hypertonia, and seizures. Despite all these challenges, a lot of their brains are quite "in tact."
And through the hard work of these kids' parents, teachers, and therapists, these kids have developed ways to communicate that were truly inspiring.
One young woman has a talker that she wears around her neck. She can page through the selections and ask questions or give answers. Two campers are able to activate a switch on a Talker with their foot to answer questions. Two others can activate their iPad via a head switch.
The two teachers at camp--Robbie and Cindy--took the skills that these kids had and built upon them in these intensive sessions from 9:30-2:00. The kids were never talked down to and they were asked to push themselves. And every kid delivered.
They did a variety of activities. Challenging games like "Minute to Win It" where a timer was started by one child and then another child had to see how many times he or she could press a "counting button" before the buzzer went off.
There was also "The Amazing Valenti." Here kids were able to show off their abilities answering questions. One young woman has a Talker that has two buttons on it--one labeled 1 and the other 2. Robbie would record two answer options for each button. For instance "Plumber" and "Florist." She would then ask the girl questions like, "Your garbage disposal is clogged. Who do you call? A Plumber or a Florist?" And despite the fact this girl seemed not to listen and appeared too distracted by all her stimming, she answered the questions right every time! She really was The Amazing Valenti!
We've been working a lot with Soren at home and at school on his iPad, trying to get him to touch the screen to activate games, turn pages, etc. And Soren has really improved on his. He did a great job during the Lemonade Stand activity activating his iPad. We recorded lots of phrases asking people to come buy lemonade. Every time Soren touched the iPad, the voice was activated and he was doing it a lot on his own. On the final day of camp, Soren performed in a play and did a fantastic job playing the Duck, hitting his iPad perfectly when he got his cue!
So, at camp, we tried having him use his head to activate a switch called a Step-by-Step talker and I was really impressed at how Soren did. He did a great job in Minute to Win It using his head, counting up to 8! Now, this could have been complete coincidence or involuntary. After all, Soren moves his head around a lot. But it's one of those things that if we can work with him, we might be able to make it purposeful. We could start on a very basic level and then, if it worked, build up to getting a button that could activate his iPad.
It's a long road and these past 2 weeks only started the ball rolling. I was very inspired by all these kids that showed me that they have a lot to say. I know Soren does too. And now I know about more tools to try and help him get there.
Thursday, June 07, 2012
Much Needed Update
Soren and I went to see his neurologist and dietician 3 weeks ago. And while I was pleased that he was averaging 4 to 6 seizures a month, they wanted better.
The first indicator that a change needed to be made was his weight. Soren has been weighing in at 48 lbs. for quite a while. And he's been stuck at 48 inches. But, when we measured him today, he was at 50 inches, but still at 48 lbs. This took him from 50th percentile of height and weight to 25th. His dietician was concerned that he wasn't gaining weight.
She wanted to bump him up 100 calories on his liquid diet. I was fine with that. It just means more Ketocal in the mix. But then she ALSO wanted to add a 100 calorie "real food" snack. She was concerned that Soren wasn't getting enough food by mouth, and eating by mouth is an important skill to keep up. And while I totally agree with her, I told her my frustration with feeding him and doing the diet because you have to get every bit in. And when Soren doesn't want to eat, he just dribbles it out. So I have to keep scooping it up and re-feeding it to him. Soon it becomes a big, spit-laden mess.
So we struck a deal. The snack is "bonus" food. Get as much as we can into him. If Soren's not in the mood for a snack, just feed him what he's interested in and move on. This really alleviated my anxiety about the snack. And Soren has REALLY been enjoying it (most of the time). The hope was that adding these 200 calories would 1.) help him gain weight and 2.) help control seizures.
To further aid in the seizure control, they also wanted me to put Soren back on Carnitor. Now, Soren was on Carnitor back when we started the diet originally. I had to crush up these fishy smelling pills and feed it to him with is food. Needless to say, Soren was not a fan of this nastiness. So, I discontinued giving it to him. But now that we have the G-tube, I could give it to him easily by injecting it!
I started him on a half dose, 3 times a day on a Tuesday. Then Soren--and everything coming out of Soren--started smelling fishy by Friday. He had a big seizure on Friday. Next he got REALLY cranky. That Saturday, Soren was clearly having discomfort. He had another big seizure in the morning. So, after giving him his morning dose, I decided to pause on the Carnitor. Especially after I read that the side effects can be stomach pains and nausea! He had another large seizure that evening. But on Sunday he was on the mend and by Monday he was his happy self again.
Thus, no more Carnitor. It doesn't agree with Soren's system to the point of giving him seizures. That's counter productive! But our boy is back, doing hard work, eating his snack, happy and smiling!
Amy
The first indicator that a change needed to be made was his weight. Soren has been weighing in at 48 lbs. for quite a while. And he's been stuck at 48 inches. But, when we measured him today, he was at 50 inches, but still at 48 lbs. This took him from 50th percentile of height and weight to 25th. His dietician was concerned that he wasn't gaining weight.
She wanted to bump him up 100 calories on his liquid diet. I was fine with that. It just means more Ketocal in the mix. But then she ALSO wanted to add a 100 calorie "real food" snack. She was concerned that Soren wasn't getting enough food by mouth, and eating by mouth is an important skill to keep up. And while I totally agree with her, I told her my frustration with feeding him and doing the diet because you have to get every bit in. And when Soren doesn't want to eat, he just dribbles it out. So I have to keep scooping it up and re-feeding it to him. Soon it becomes a big, spit-laden mess.
So we struck a deal. The snack is "bonus" food. Get as much as we can into him. If Soren's not in the mood for a snack, just feed him what he's interested in and move on. This really alleviated my anxiety about the snack. And Soren has REALLY been enjoying it (most of the time). The hope was that adding these 200 calories would 1.) help him gain weight and 2.) help control seizures.
To further aid in the seizure control, they also wanted me to put Soren back on Carnitor. Now, Soren was on Carnitor back when we started the diet originally. I had to crush up these fishy smelling pills and feed it to him with is food. Needless to say, Soren was not a fan of this nastiness. So, I discontinued giving it to him. But now that we have the G-tube, I could give it to him easily by injecting it!
I started him on a half dose, 3 times a day on a Tuesday. Then Soren--and everything coming out of Soren--started smelling fishy by Friday. He had a big seizure on Friday. Next he got REALLY cranky. That Saturday, Soren was clearly having discomfort. He had another big seizure in the morning. So, after giving him his morning dose, I decided to pause on the Carnitor. Especially after I read that the side effects can be stomach pains and nausea! He had another large seizure that evening. But on Sunday he was on the mend and by Monday he was his happy self again.
Thus, no more Carnitor. It doesn't agree with Soren's system to the point of giving him seizures. That's counter productive! But our boy is back, doing hard work, eating his snack, happy and smiling!
Amy
Monday, April 23, 2012
Vote for Trynity!
This month I am asking folks visiting Soren's blog to Vote for Trynity!
Soren's friend and classmate Trynity is in need of an accessible van so that she can be transported in her wheelchair from home to school to therapy. To help achieve this goal, I have made a video and submitted it to a contest in the hope of winning her family a van.
But in order to do this, we need your votes! Go to:
http://www.nmeda.com/mobility-awareness-month/heroes/california/glendale/1502/trynity-roberts
(Sorry it doesn't actually link. Just cut and paste. Blogger changed their format and it totally sucks now.)
There you can watch the video and then Vote for Trynity!
If you put in Promo Code 889, we will get 5 votes instead of 1 vote. So put in the code!
Thanks so much for your help!
Amy
Saturday, March 03, 2012
MIC-KEY, KETO, and LAUGHS
Soren got his MIC-KEY button put in a week ago and I LOVE this "upgrade" in the G-Tube experience. Now instead of a 6 inch tube sticking out of his belly (which made me very nervous) he has this small little port. When it's time to feed Soren, I pop the port open, attach a tube that locks in (yay!) and do the feeds. It's quite slick. I'm still keeping Soren in the binder around his belly because I'm afraid Soren will rub his belly and accidentally pull out the button. I know how to put a new one in, I'd just rather avoid it!
And now that we got the upgrade with the MIC-KEY, we also got an upgrade on the Keto Cal that Soren uses for his Ketogenic Diet. Previously, we had cans of Keto Cal and this stuff doesn't really mix up all that well. So, with the G-Tube, insurance will cover the LIQUID Keto Cal! While I do have to give this stuff a good shake (REALLY FATTY!), it's much smoother and actually less prep than measuring out the powder every day. I do find it ironic that insurance would only cover this stuff when Soren got the G-Tube when it's actually formulated to drink and smells like vanilla cake mix. And I actually just tasted it and that's what it tastes like too! But Soren gets it through a tube, so the whole flavor thing doesn't matter!
But enough of all this boring, technical stuff. Let me tell you about the boy! For two months after his surgery, Soren was quiet and sad. I really did fear we wouldn't see his smile or hear his laugh again. We've gone full years without those, so I thought we'd lost them again.
Then about 2 weeks ago, Soren started smiling and laughing WAY MORE than ever before! I don't know if it's that he's finally fully recovered from his surgery (he can't really tell us if he's hurting) or if it's because he's much more hydrated thanks to the G-Tube or maybe it's that he hasn't had a seizure in 2 1/2 weeks. Possibly a combination of all those things!
All I know is that this boy now laughs and smiles and has a knowing look in his eyes. He seems to be telling us jokes in his own language and then laughing hilariously at the punch line. I was taking a chicken out of the oven last week and as it came out, it sizzled really loudly. Soren (who was in the kitchen with me) burst into laughter every time that chicken out! I think it was so loud and surprising, he just thought it was the best! Who knew a roast chicken could give such joy to a boy that's not even going to eat the chicken!
Nice to have our happy Soren back and better than ever!
Amy
And now that we got the upgrade with the MIC-KEY, we also got an upgrade on the Keto Cal that Soren uses for his Ketogenic Diet. Previously, we had cans of Keto Cal and this stuff doesn't really mix up all that well. So, with the G-Tube, insurance will cover the LIQUID Keto Cal! While I do have to give this stuff a good shake (REALLY FATTY!), it's much smoother and actually less prep than measuring out the powder every day. I do find it ironic that insurance would only cover this stuff when Soren got the G-Tube when it's actually formulated to drink and smells like vanilla cake mix. And I actually just tasted it and that's what it tastes like too! But Soren gets it through a tube, so the whole flavor thing doesn't matter!
But enough of all this boring, technical stuff. Let me tell you about the boy! For two months after his surgery, Soren was quiet and sad. I really did fear we wouldn't see his smile or hear his laugh again. We've gone full years without those, so I thought we'd lost them again.
Then about 2 weeks ago, Soren started smiling and laughing WAY MORE than ever before! I don't know if it's that he's finally fully recovered from his surgery (he can't really tell us if he's hurting) or if it's because he's much more hydrated thanks to the G-Tube or maybe it's that he hasn't had a seizure in 2 1/2 weeks. Possibly a combination of all those things!
All I know is that this boy now laughs and smiles and has a knowing look in his eyes. He seems to be telling us jokes in his own language and then laughing hilariously at the punch line. I was taking a chicken out of the oven last week and as it came out, it sizzled really loudly. Soren (who was in the kitchen with me) burst into laughter every time that chicken out! I think it was so loud and surprising, he just thought it was the best! Who knew a roast chicken could give such joy to a boy that's not even going to eat the chicken!
Nice to have our happy Soren back and better than ever!
Amy
Monday, January 30, 2012
G-Tube 1 Month + Update
Hey all,
Sorry I have been so remiss on updating Soren's progress. The good news is that, after all that initial trauma, he is doing really well. I must admit that I'm still a bit of a Nervous Nelly fearing that he's going to pull this thing out again. But now that his stoma is healed, I know that putting a new one in isn't horrifying the way it was one week after surgery. I actually have a replacement tube and was shown what to do. So, in a pinch, if I didn't pass out from fear, I know I could do it.
And I have to say, all the reasons for putting the G-Tube in have been confirmed. Soren got sick, and we were able to get all his KetoCal, liquid, and meds in no problem. Soren has had some massive seizures. 2 huge ones in one day last week. Again, food, liquid, meds--easy peasy.
I've also been feeding him regular food now and again to keep up those skills. And most times, he is ravenous and really pleased to be eating. But then there was that one evening he was a pill about it. I muscled through determined, even though it was stressing me out to get every bit of that food in. As I did I thought, "Yup. This is why we got the G-Tube!"
He should be getting his MIC-KEY Button in a couple weeks. You know, just as we've mastered this particular G-Tube! But everyone promises that the Button makes things even more easy. And he will be less prone to removing it accidentally.
On a fun note, we got Soren signed off to swim at school! I got him a fashionable wet suit-style bathing suit that covers his tummy so that nobody feels nervous moving him about in the pool.
That's it!
Sorry I have been so remiss on updating Soren's progress. The good news is that, after all that initial trauma, he is doing really well. I must admit that I'm still a bit of a Nervous Nelly fearing that he's going to pull this thing out again. But now that his stoma is healed, I know that putting a new one in isn't horrifying the way it was one week after surgery. I actually have a replacement tube and was shown what to do. So, in a pinch, if I didn't pass out from fear, I know I could do it.
And I have to say, all the reasons for putting the G-Tube in have been confirmed. Soren got sick, and we were able to get all his KetoCal, liquid, and meds in no problem. Soren has had some massive seizures. 2 huge ones in one day last week. Again, food, liquid, meds--easy peasy.
I've also been feeding him regular food now and again to keep up those skills. And most times, he is ravenous and really pleased to be eating. But then there was that one evening he was a pill about it. I muscled through determined, even though it was stressing me out to get every bit of that food in. As I did I thought, "Yup. This is why we got the G-Tube!"
He should be getting his MIC-KEY Button in a couple weeks. You know, just as we've mastered this particular G-Tube! But everyone promises that the Button makes things even more easy. And he will be less prone to removing it accidentally.
On a fun note, we got Soren signed off to swim at school! I got him a fashionable wet suit-style bathing suit that covers his tummy so that nobody feels nervous moving him about in the pool.
That's it!
Tuesday, December 27, 2011
G-Tube 1 Week Update
So I was going to write yesterday about how great everything has been going. Soren had been getting more and more comfortable, recovering from his surgery. I was getting more and more adept and giving him his feeds through the G-tube. Why, in 5 days, I could crimp, flush, and feed with this tube like a master. (Those of you who know G-tube language get what I mean.) In fact, I could see how this was going to make my life significantly easier. I could do the feeds by myself, no sweat!
We were so optimistic and pleased with how things were going, we decided to head to Bed, Bath, and Beyond to get new pillows. Yay us!
But then, as I was wheeling Soren to his room to get dressed for our outing, he caught his arm through the 6 inch G-tube sticking out of his belly, yanked on it, and pulled it out. It was horrible and petrifying for us. Soren was immediately in terrible pain.
Now, in all honesty, G-tubes come out all the time. They warn you that this can happen. People can grab them and pull them out. The trouble is, Soren only had his surgery a week ago, so he's obviously still healing. In three months, everything would be different. He'd be healed. He'd have what's called a Mic-Key button put in which is more flush to the skin and less prone to getting pulled out. And, in the event that it was, I'd have been trained to just pop one back in.
But yesterday when Soren pulled this out, we knew exactly what our next course of action was. Get to the ER! Stat! See, the hole where the G-tube goes in can close up rather quickly and then you're back to square one, having to start the process all over and have surgery again. I was told that we had to get a new tube in within 15 minutes (turns out we had more time than that). But with that information, we loaded Soren up in the car and headed immediately to the ER two blocks from us.
Turns out December 26th, the day after Christmas, is one of the busiest days in the ER all year. But when I told them what had happened, they tended to Soren immediately. They told us not to worry. That this happens all the time. But, once again, Soren had surgery a mere 7 days before, which complicated the ease of fixing this. And because we weren't at Children's where they specialize in kids, this ER didn't have the proper G-tube. But they did the next best thing, putting in a Foley to keep the hole open. And then, the nurse did the best thing ever. She gave Soren a surgical binder (a girdle) to wrap around his tummy so he wouldn't accidentally yank the tube out again. It's brilliant! Why weren't we given this before?
After we got the Foley in, we headed straight to Children's. Yes we visited not one, but TWO ERs the day after Christmas! They also assured us that this happens all the time and that they could just pop a new tube in. Until, like the other hospital, they realized his wound had not healed up yet to allow this simple procedure.
The thing is, when they cut this opening for the G-tube, the cut through your abdominal wall and your stomach. But then they don't sew up the gap between your abdominal wall and your stomach. Instead, the body naturally heals these two areas together over the next 3 months. But now, there is a gap and if you put a new tube in, you want to make sure you've landed the tube in the stomach and not in the space in between. If that's where you put it, then the feedings go into your Peritoneum, you can get an infection, and die.
So, the ER doctor couldn't just pop this in. We needed a doctor from the GI team. So we got a great doctor who came and did that. However, she warned us that if it didn't work, Soren would need to get admitted again and have surgery again the next day. But, she did easily get it in (thanks to the Foley from the 1st ER). Our next step was getting Soren' X-rayed to check that it did, in fact, land in the right place. Everything checked out a-okay and, 5 hours after this endeavor began, we headed home.
And while everything seemed peachy keen, the problem is that in changing the tube, they changed my skill in using it. This tube is shorter, so crimping is more difficult. The parts don't fit together as well, so I need an extra set of hands to make sure tubes don't pop out. And I'm now incredibly jumpy whenever Soren moves his arms.
So I'm actually hoping I can take Soren back to Children's today to see the GI nurse to get advice. I can't continue with the tube like this. And hopefully when I post next I'll have better news.
Amy
We were so optimistic and pleased with how things were going, we decided to head to Bed, Bath, and Beyond to get new pillows. Yay us!
But then, as I was wheeling Soren to his room to get dressed for our outing, he caught his arm through the 6 inch G-tube sticking out of his belly, yanked on it, and pulled it out. It was horrible and petrifying for us. Soren was immediately in terrible pain.
Now, in all honesty, G-tubes come out all the time. They warn you that this can happen. People can grab them and pull them out. The trouble is, Soren only had his surgery a week ago, so he's obviously still healing. In three months, everything would be different. He'd be healed. He'd have what's called a Mic-Key button put in which is more flush to the skin and less prone to getting pulled out. And, in the event that it was, I'd have been trained to just pop one back in.
But yesterday when Soren pulled this out, we knew exactly what our next course of action was. Get to the ER! Stat! See, the hole where the G-tube goes in can close up rather quickly and then you're back to square one, having to start the process all over and have surgery again. I was told that we had to get a new tube in within 15 minutes (turns out we had more time than that). But with that information, we loaded Soren up in the car and headed immediately to the ER two blocks from us.
Turns out December 26th, the day after Christmas, is one of the busiest days in the ER all year. But when I told them what had happened, they tended to Soren immediately. They told us not to worry. That this happens all the time. But, once again, Soren had surgery a mere 7 days before, which complicated the ease of fixing this. And because we weren't at Children's where they specialize in kids, this ER didn't have the proper G-tube. But they did the next best thing, putting in a Foley to keep the hole open. And then, the nurse did the best thing ever. She gave Soren a surgical binder (a girdle) to wrap around his tummy so he wouldn't accidentally yank the tube out again. It's brilliant! Why weren't we given this before?
After we got the Foley in, we headed straight to Children's. Yes we visited not one, but TWO ERs the day after Christmas! They also assured us that this happens all the time and that they could just pop a new tube in. Until, like the other hospital, they realized his wound had not healed up yet to allow this simple procedure.
The thing is, when they cut this opening for the G-tube, the cut through your abdominal wall and your stomach. But then they don't sew up the gap between your abdominal wall and your stomach. Instead, the body naturally heals these two areas together over the next 3 months. But now, there is a gap and if you put a new tube in, you want to make sure you've landed the tube in the stomach and not in the space in between. If that's where you put it, then the feedings go into your Peritoneum, you can get an infection, and die.
So, the ER doctor couldn't just pop this in. We needed a doctor from the GI team. So we got a great doctor who came and did that. However, she warned us that if it didn't work, Soren would need to get admitted again and have surgery again the next day. But, she did easily get it in (thanks to the Foley from the 1st ER). Our next step was getting Soren' X-rayed to check that it did, in fact, land in the right place. Everything checked out a-okay and, 5 hours after this endeavor began, we headed home.
And while everything seemed peachy keen, the problem is that in changing the tube, they changed my skill in using it. This tube is shorter, so crimping is more difficult. The parts don't fit together as well, so I need an extra set of hands to make sure tubes don't pop out. And I'm now incredibly jumpy whenever Soren moves his arms.
So I'm actually hoping I can take Soren back to Children's today to see the GI nurse to get advice. I can't continue with the tube like this. And hopefully when I post next I'll have better news.
Amy
Wednesday, December 21, 2011
G-Tube Update
Yesterday was really rough for Soren. Lots of pain from the surgery site. So he was getting regular doses of morphine, which seemed to help briefly.
And he was REALLY hungry, which was also making him frantic. He was wringing his hands like crazy and any time he got close to touching his belly, he'd flinch. It was hard to watch and not be able to help him.
He didn't get Pedialyte until about 4:00 pm, which means he'd gone about 48 hours without anything in his belly. He then started getting his Keto Cal a little later and the real calories started hitting. He finally got a bit happier.
With the food in him, he actually had a good night. And this morning he's been giving a few smiles and flirting with the nurses. He's getting back to his silly self.
Here he is happily watching Cars. Next up, Kung Fu Panda! Amy
And he was REALLY hungry, which was also making him frantic. He was wringing his hands like crazy and any time he got close to touching his belly, he'd flinch. It was hard to watch and not be able to help him.
He didn't get Pedialyte until about 4:00 pm, which means he'd gone about 48 hours without anything in his belly. He then started getting his Keto Cal a little later and the real calories started hitting. He finally got a bit happier.
With the food in him, he actually had a good night. And this morning he's been giving a few smiles and flirting with the nurses. He's getting back to his silly self.
Here he is happily watching Cars. Next up, Kung Fu Panda! Amy
Friday, December 16, 2011
Thanks for the Donations
Hello everyone,
I want to thank you all for your generous donations on Soren's behalf over the years. Thanks to you all, we've gotten Soren numerous Stem Cell Treatments and were able to get our awesome Accessible Van.
I also have to thank the Talbert Family Foundation, who very kindly and generously made Soren one of their Talbert Kids, allowing you all to make Tax Deductible Donations.
But the time for donations for Soren is now over. Soren's account at the Talbert Family Foundation is now closed allowing them to offer their support to new kids in need.
Thank you so very much for your kindness. It has meant the world to us and our sweet boy.
Amy
I want to thank you all for your generous donations on Soren's behalf over the years. Thanks to you all, we've gotten Soren numerous Stem Cell Treatments and were able to get our awesome Accessible Van.
I also have to thank the Talbert Family Foundation, who very kindly and generously made Soren one of their Talbert Kids, allowing you all to make Tax Deductible Donations.
But the time for donations for Soren is now over. Soren's account at the Talbert Family Foundation is now closed allowing them to offer their support to new kids in need.
Thank you so very much for your kindness. It has meant the world to us and our sweet boy.
Amy
Monday, October 17, 2011
Ketogenic Diet: One Year
It's been a little over a year since Soren started the Keto Diet. And I must say, it's been totally worth the work and I've actually gotten good at the whole measuring, heating, and mixing of the foods.
As we came to this one year anniversary, Soren did hit some bumps in the road. He was cutting 2 molars and 2 front teeth which caused him to get an ear infection. We of course didn't figure this all out for a little bit. The week before we figured it out, Soren was wringing his hands like crazy to the point of breaking his skin. We still didn't know about the ear infection, but his nose started running so we gave him pain-killers. We thought he had a cold, took him to the doctor, and confirmed that he had an ear infection. But still, no fever so it was unclear if this was a cold or not.
Then that same day, we went to the dentist who told us about his teeth and that teething can cause ear infections! So we started Soren on antibiotics. Then, as happens in our family, ALL of us caught colds, causing Soren to feel even lousier!
Through this (the teething, the ear infection, the cold, the antibiotics), Soren did have seizures. But only one a day and only two for the week during the two weeks of this ordeal.
The even trickier part for me is that during this, Soren decided he didn't want to eat solid food. His mouth just wasn't happy about eating. So I had to do his Keto Cal shakes (a specially formulated powder) or this special Egg Nog. The nice thing is that both of these are totally balanced ketogenically. The bad thing is that I was afraid Soren would forget how to eat during this ordeal.
Finally we got through it all. We were on the final wean of his Depakote--only half a pill once a day. I was nervous after this bad round of stuff, but I braved it and took that last dose out. Sure enough, he had some final withdrawal seizures. But now he is totally off the Depakote. Yay!
And then yesterday I finally braved giving Soren solid foods again. I was hoping that he would eat it and not hold it in his mouth as he is prone to do or dribble it out as he is prone to do after holding it in his mouth forever. It was a slow start and he did indeed want to hold that stuff in for a bit. I feared I'd have to switch to a shake yet again. But we both toughed it out and he finally ate it all like a trooper.
AND, during all this, Soren turned 8 years old! Whew! It's been a busy, exhausting, rather stressful month. But, as usual, we made it through. Now Soren is back to being his babbling, energetic, sometimes smiling and laughing self. And we are confident this will get even better.
Amy
As we came to this one year anniversary, Soren did hit some bumps in the road. He was cutting 2 molars and 2 front teeth which caused him to get an ear infection. We of course didn't figure this all out for a little bit. The week before we figured it out, Soren was wringing his hands like crazy to the point of breaking his skin. We still didn't know about the ear infection, but his nose started running so we gave him pain-killers. We thought he had a cold, took him to the doctor, and confirmed that he had an ear infection. But still, no fever so it was unclear if this was a cold or not.
Then that same day, we went to the dentist who told us about his teeth and that teething can cause ear infections! So we started Soren on antibiotics. Then, as happens in our family, ALL of us caught colds, causing Soren to feel even lousier!
Through this (the teething, the ear infection, the cold, the antibiotics), Soren did have seizures. But only one a day and only two for the week during the two weeks of this ordeal.
The even trickier part for me is that during this, Soren decided he didn't want to eat solid food. His mouth just wasn't happy about eating. So I had to do his Keto Cal shakes (a specially formulated powder) or this special Egg Nog. The nice thing is that both of these are totally balanced ketogenically. The bad thing is that I was afraid Soren would forget how to eat during this ordeal.
Finally we got through it all. We were on the final wean of his Depakote--only half a pill once a day. I was nervous after this bad round of stuff, but I braved it and took that last dose out. Sure enough, he had some final withdrawal seizures. But now he is totally off the Depakote. Yay!
And then yesterday I finally braved giving Soren solid foods again. I was hoping that he would eat it and not hold it in his mouth as he is prone to do or dribble it out as he is prone to do after holding it in his mouth forever. It was a slow start and he did indeed want to hold that stuff in for a bit. I feared I'd have to switch to a shake yet again. But we both toughed it out and he finally ate it all like a trooper.
AND, during all this, Soren turned 8 years old! Whew! It's been a busy, exhausting, rather stressful month. But, as usual, we made it through. Now Soren is back to being his babbling, energetic, sometimes smiling and laughing self. And we are confident this will get even better.
Amy
Friday, August 26, 2011
End of Summer Update
It has been a busy summer and, thus, I have not gotten around to posting.
The great news is that Soren is still doing really well on the diet. But, of course, there have been some bumps in the road.
June--Due to an ear infection, Soren had to be on 3 rounds of antibiotics. During this time I, somewhat foolishly, tried to continue to wean him off Depakote. It was down to 1 morning and 1 evening dose. I cut the morning dose during this whole antibiotic thing. Soren had a few strong seizures, so I assumed this was related to the Depakote and put the morning dose back.
However, at this same exact time, I started him on his 3rd antibiotic. The doctor who prescribed it was from an Urgent Care in Carpinteria. Super nice doctor, but I don't think he fully understood the Keto Diet (why would he?) and the antibiotic prescribed had too many Carbs in it! So, I took him off this as well.
Once I put the Depakote back and stopped the antibiotic, the seizures stopped. The question was, which of these was really affecting Soren?
July--We went to the neurologist and discovered the possible answer. Being on antibiotics can lower one's seizure threshold! So being on 3 rounds of antibiotics can REALLY lower one's seizure threshold. (not to mention that the ear infection itself lowers the seizure threshold)
Now that Soren was clear of his infection, she encouraged me to continue Soren's Depakote wean. So I eliminated the morning dose, and we didn't have any side effects. In fact, Soren didn't have any seizures in July!
August--I was now ready to drop out Soren's last evening dose of Depakote. His doctor advised me to give him half for a couple weeks before cutting it out completely. She warned me that Soren may have withdrawal seizures at this point. And, sure enough, I started the wean on Sunday and he had 2 big seizures this week. Poor guy!
The other thing I had to do this month was get Soren's blood drawn so they could check how things are going on since he's been on the Keto Diet.
One benefit of the Keto Diet has been that Soren's had a lot more energy and "tells" us when he likes or doesn't like something.
The problem is, when he doesn't like something, he puts up quite a fuss! This makes drawing blood REALLY difficult. I mentioned this to his neurologist and she gave me the okay to give Soren some "relaxing medicine" to mellow him out. So I did that this morning and the blood draw went off without a hitch.
School starts on Monday and I think Soren's really going to be happy to be back. We're just not as fun and exciting as all his friends.
Amy
The great news is that Soren is still doing really well on the diet. But, of course, there have been some bumps in the road.
June--Due to an ear infection, Soren had to be on 3 rounds of antibiotics. During this time I, somewhat foolishly, tried to continue to wean him off Depakote. It was down to 1 morning and 1 evening dose. I cut the morning dose during this whole antibiotic thing. Soren had a few strong seizures, so I assumed this was related to the Depakote and put the morning dose back.
However, at this same exact time, I started him on his 3rd antibiotic. The doctor who prescribed it was from an Urgent Care in Carpinteria. Super nice doctor, but I don't think he fully understood the Keto Diet (why would he?) and the antibiotic prescribed had too many Carbs in it! So, I took him off this as well.
Once I put the Depakote back and stopped the antibiotic, the seizures stopped. The question was, which of these was really affecting Soren?
July--We went to the neurologist and discovered the possible answer. Being on antibiotics can lower one's seizure threshold! So being on 3 rounds of antibiotics can REALLY lower one's seizure threshold. (not to mention that the ear infection itself lowers the seizure threshold)
Now that Soren was clear of his infection, she encouraged me to continue Soren's Depakote wean. So I eliminated the morning dose, and we didn't have any side effects. In fact, Soren didn't have any seizures in July!
August--I was now ready to drop out Soren's last evening dose of Depakote. His doctor advised me to give him half for a couple weeks before cutting it out completely. She warned me that Soren may have withdrawal seizures at this point. And, sure enough, I started the wean on Sunday and he had 2 big seizures this week. Poor guy!
The other thing I had to do this month was get Soren's blood drawn so they could check how things are going on since he's been on the Keto Diet.
One benefit of the Keto Diet has been that Soren's had a lot more energy and "tells" us when he likes or doesn't like something.
The problem is, when he doesn't like something, he puts up quite a fuss! This makes drawing blood REALLY difficult. I mentioned this to his neurologist and she gave me the okay to give Soren some "relaxing medicine" to mellow him out. So I did that this morning and the blood draw went off without a hitch.
School starts on Monday and I think Soren's really going to be happy to be back. We're just not as fun and exciting as all his friends.
Amy
Friday, June 03, 2011
Keto through Colds
Hey all,
Today I was going to very happily post how well Soren is doing. And then he had a big, awful seizure during breakfast. Poor kid. What a way to start the day!
Still, the boy is doing great. Especially considering he's been sick for about a month! He caught a cold Mother's Day weekend. Despite that, he didn't have any seizures. Until the NEXT weekend! That seizure marked the end of a 6 week stint with no seizures! Not to shabby!
Especially since just a few days later, I found out that Soren's cold had led to a raging ear infection in his left ear. So the fact that he only had 1 seizure through that was very impressive. So Soren went on antibiotics to clear the ear infection. (And probiotics to help his tummy)
But then on the day of his last dose, last Friday, he caught ANOTHER cold! We went in for an ear recheck this past Tuesday and while the infection in his left ear was better, he now has one in his RIGHT EAR!!! So another round of antibiotics was started. Soren is clearly feeling better. Still, this has taken quite a toll on him, so it's no wonder he had another seizure.
We're hoping with this round of antibiotics we'll get him all cleared up and healthy going into the summer. (Of course, I just caught my 3rd cold of this year. Ugh!)
A note on getting through colds on the Keto Diet. We can't use regular, children's meds because they have sugar in them! So, no Dimatap or Motrin. Instead he got Tylenol suppositories, nasal decongestants, and Vicks Vapo Rub. And for his antibiotic, we can't do the liquid stuff. Instead, I crushed up non-coated pills and put them in his food. Yuck!
And then there was the challenge of getting fluids in him. Turns out, Soren loves warm chicken broth, which is allowed on the diet and really seemed to sooth him.
All in all, though, Soren is doing great and has been quite a trooper through a tough time.
Amy
Today I was going to very happily post how well Soren is doing. And then he had a big, awful seizure during breakfast. Poor kid. What a way to start the day!
Still, the boy is doing great. Especially considering he's been sick for about a month! He caught a cold Mother's Day weekend. Despite that, he didn't have any seizures. Until the NEXT weekend! That seizure marked the end of a 6 week stint with no seizures! Not to shabby!
Especially since just a few days later, I found out that Soren's cold had led to a raging ear infection in his left ear. So the fact that he only had 1 seizure through that was very impressive. So Soren went on antibiotics to clear the ear infection. (And probiotics to help his tummy)
But then on the day of his last dose, last Friday, he caught ANOTHER cold! We went in for an ear recheck this past Tuesday and while the infection in his left ear was better, he now has one in his RIGHT EAR!!! So another round of antibiotics was started. Soren is clearly feeling better. Still, this has taken quite a toll on him, so it's no wonder he had another seizure.
We're hoping with this round of antibiotics we'll get him all cleared up and healthy going into the summer. (Of course, I just caught my 3rd cold of this year. Ugh!)
A note on getting through colds on the Keto Diet. We can't use regular, children's meds because they have sugar in them! So, no Dimatap or Motrin. Instead he got Tylenol suppositories, nasal decongestants, and Vicks Vapo Rub. And for his antibiotic, we can't do the liquid stuff. Instead, I crushed up non-coated pills and put them in his food. Yuck!
And then there was the challenge of getting fluids in him. Turns out, Soren loves warm chicken broth, which is allowed on the diet and really seemed to sooth him.
All in all, though, Soren is doing great and has been quite a trooper through a tough time.
Amy
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