Why Are You Late?

This is the question I was asked when Soren and I arrived to pick up Soren's new leg braces at Shriners Hospital for Children this morning at 9:08.  8 minutes late to our appointment.

Now, before I answer that question, let me express that the Shriners Hospital for Children provides great services for kids.  I know I've mocked the mystery smell and posted pictures of creepy clown art that are both at Shriners.  But what I've seen most is their commitment to kids who need prosthetic limbs.  Since first going to Shriners at the end of last year, I've seen more kiddos with missing arms or legs than I've seen in my whole life.  And at Shriners they are cared for and given new limbs.  It's a terrific place.

Now, back to my story.  "Why are you late?" the woman in registration asked me in a rather rude, snippy tone.  I was so thrown by the question, I simply told her that I hit horrible traffic.  Which was true.  But it wasn't the real reason why I was late.

I was late because, before getting Soren out of bed, he had a MASSIVE seizure.  A real whomper, as we say.  After seizing, he peed all over.  And while trying to clean him all up, he pooped.  But this wasn't an easy poop.  Soren was working it.  It was struggling to get this out.  And when that's happening, all you can do is wait.  So we did.

Aaron and I then got him wiped and washed.  Aaron headed off to work and I fed Soren in bed via his G-tube (one of the best things we ever got Soren).  I then prepared things while waiting to see if there was any more "action."  There wasn't and the clock was ticking, so I got Soren dressed, loaded in his wheelchair, and we headed off.

We got into the car at 8:20.  20 minutes later than I wanted.  And then we hit some awful rush-hour traffic.  I usually go to Shriners later in the day, so I stupidly was not expecting this.  At least not AS MUCH as this.  The only thing that made it so that we were only 8 minutes late was using the Waze App.  But it was my first time using it and I was suspect.  Should I just take the route I always take?  Waze kept trying to get me off my usual course.  Finally (a bit too late), I starting following their directions.  And while some of the directions were a little harrowing (going down a steep hill and trying to cut across traffic on Beverly), we made it there.  

Now, there are only 4 handicap parking spaces at Shriners.  And, as I noted, there are many kids there with physical disabilities.   So I had to find an "odd" space to park my van so I could launch the ramp.  I did this, we went up the strange-smelling elevator, and we went to registration.  On their digital clock it said 9:08.  I felt this was a HUGE accomplishment considering what we'd been through that morning.

But clearly I was the only one.  "Why are you late?" she asked as I wheeled up my child who was flopped over in his chair because he was still recovering from his seizure.  I would hope that someone working at her job, a job where all the children have some sort of disability and where the parents are doing their best, would offer some compassion or concern.  "You're late.  Is your son okay?"  

Instead I felt like a kid being reprimanded at school.  I felt small.  I felt like I'd failed.  But I shouldn't have.  I was late because I was caring for my son.  I was late because I needed to make sure he was clean and fed.  I was late because we needed to arrive safely.  

"Why are you late?"  I was late because I was being a parent.

Amy

  

End of the Year Wrap-Up

It's been quite a bit since I blogged.  I always want to give folks good news.  And it's not the Soren has been doing poorly.  He's just been maintaining the status quo for a while.  But then as I thought of  his year, I realized he has had some stuff happening that I haven't noted.

• Soren's Legs:  Have gotten REALLY tight since last year.  Soren injured the pinkie toe on his left foot around this time last year.  After that, he started guarding his left leg because the toe took so long to heal.  We massaged his legs, but they just wouldn't relax significantly.  So we went to an orthopedic surgeon, who informed us that Soren's left hip is dislocated.  
• A dislocated hip!  Oh no!  Now, for you or me, that would really suck and be horribly uncomfortable.  But since Soren doesn't walk, it's less of an issue.  In fact, it's BECAUSE Soren doesn't walk (and has never really walked) that his hip dislocated in the first place.  Without walking, the joint does not develop properly, so his leg easily dislocated.  And it would be far more trouble to do surgery (pain, recovery, etc.) then to just leave it as is.
• However, the doctor recommended Botox injections into the muscles on Soren's thighs in order to relax them.  We saw her colleague, who did the injections.  Unfortunately, Soren's muscles only relaxed for about 2 weeks at the most.  
• So now we've been massaging his legs with Tiger Balm, which seems to help his legs a bit--and really opens up the sinuses!   
• And we are trying Rolfing for the first time to also try and help him.  I've been getting Rolfed (which sounds disgusting) over the past couple months to help my ever-aging body.  And while it's not pleasant during the session, I always feel better afterwards and am noticing positive differences.  I trust my instructor Eric and asked if he thought he could help Soren.  So Soren had his first session on Tuesday the 29th.  Eric was much more gentle with Soren.  And while Soren seemed a bit suspicious at first, he eventually relaxed and let Eric do his thing.  But when Eric got to Soren's legs (which are really for the 2nd session), Soren immediately tensed up again.  It was fascinating to watch as Eric touched Soren's left leg, his right shoulder would rise up in response.  Soren was sitting up MUCH taller afterwards, which was great to see.  So I think we're going to try a 2nd session, where we really get into the legs.
• Soren's Seizures: Haven't really changed notably.  He's on a new Ketogenic formula called Keto Vie.  We were hoping that this would help cut down his seizures, but things have remained the same.  We do think he's more alert on this formula though.  
• Soren's School:  Was rebuilt and his GORGEOUS!  Soren has responded really well to the new environment, which has lovely lighting and lots of vibrant colors.  He's been much more alert and attentive at school.
• Soren's Wheelchair:  Has worn out its brakes.  Plus Soren has had the chair for years and, as a growing boy, he's simply bursting out of it.  Now that we know about his dislocated hip, we can get a seat accommodating that, making it more comfortable for him while sitting.  So getting a new chair will be our 1st adventure for the new year.
• Soren's Height and Weight:  Soren is a big boy, weighing in at 68 lbs. and measuring 58 1/2 inches.  The most challenging thing about this is that Soren loves to snuggle, but with his legs being both long and in pain, this has gotten really challenging.  We try our best to make sure we hold him because the boy loves the love.
• Soren's Smiles:  We haven't seen a lot of smiles lately.  I've begun marking them down in my calendar so I remember.  He smiled on November 20th and on the 21st I even heard him giggle.  He had a good Christmas (no seizures!) and was really interested in the present opening.  Hopefully this next year we'll get better seizure control which always leads to more smiles.

I think that sums it up!  I'll do my best to post more often, giving updates on Soren's progress.

Amy

A Good Week

Hello again.  Shockingly, I'm blogging in a more timely fashion.  After my last post, which was somewhat of a bummer, I wanted to note that Soren had a really good week.

On Monday, Soren's new daytime caregiver showed up.  He'd had a rough morning of seizures (3 before 8:00), so he was a bit pokey.  But then he began peeking at his caregiver, sizing her up.  Aaron had provided "Hitchhiker's Guide to the Galaxy" for her to read to him.  And so she started reading, and Soren kept his eye on her while she did.  When I came home to feed him lunch, he had perked up.  They were watching "Spirited Away" and Soren actually seemed interested in the movie.  That night, Soren was talking and talking.  He was so excited, he didn't even want to go to sleep when the rest of us were heading to bed.  

The next morning, Soren was rarin' to go.  He was awake for almost the entire time his caregiver was here.  She read to him and they watched "Star Trek: Into Darkness."  The gal has great taste in movies!  When Soren's afternoon caregiver arrived, he talked to her continuously, and was a helper in the shower.  He was just chockfull of energy.

Wednesday was rougher.  Maybe adjusting to all that excitement?  He had a bunch of seizures and he slept most of the day.  But Thursday and Friday he was back to his energetic self.  By this time, his caregiver had finished "Hitchhikers" and moved onto "The Kneebone Boy" (one of his sister's recommendations).

Oh, and Friday morning we heard Soren cry out at 5:15.  Aaron and I ran in and Soren had scooted and turned so much in his bed, he trapped himself between the mattress and the gate.  Horrifying?  Sure.  But exciting that he had THAT much energy?  Absolutely!  Now we just need to put the pillow back between him and his gate.  It had been so long since he'd moved around, we'd stopped doing that.

Soren hasn't had any seizures since Wednesday and this weekend his energy has continued.  He's been chatty and he's been moving all over the place.  Lots of stomach crunches.  We can tell he desperately wants to sit up on his own, but he just doesn't quite know how.  If these seizures would stay away, who knows what he could do?

This week Soren does a morning camp (something I need to blog about another day).  His caregiver will be with him so I can work.  Hopefully he'll enjoy it as much as being read to and watching movies!

Amy

Big Changes

I just went to Soren's blog page and realized that I haven't written anything since February!  Good gravy, that's a LONG TIME!!!

Why haven't I written for so long?  Well, usually when I blog, it's about something really cool or important that's happening with Soren.  I guess I haven't felt inspired for many months!

Why?  Well, as far as his seizures, he's not doing great.  That is never fun to write about.  July has been especially rough for him.  I have no idea why.  He's having 1-2 BIG tonic-clonics each day.  They really knock him out.  I've even had to give him the emergency medicine Clonipin a couple times, which stops the seizure activity but completely zonks him out.

Because of all these seizures, we haven't seen Soren smile or laugh for a LONG time.  That's really hard as a parent.  To have a child that smiles and laughs--even sporadically--and then it all gets wiped out by seizures?  Super sucky.

But things have been happening in our lives that I can update you on.  In April we got a new couch.  There were many reasons for this.  1.) Our couch was 18 years old and had seen better days.  2.)  Moira didn't like sitting on the separate armchair far away from everything.  3.)  It was getting too hard to get Soren off the Living Room floor.  And 4.)  Our house was hit by a car and glass got all over our old couch.

That last thing happened AFTER we ordered our new couch.  But it's a good thing we did, because our couch was then ruined!  We now have custom built sectional with a chaise for Soren to stretch out on.  And he LOVES it.  While we may not get smiles from the boy, we get excited snorts.  He waves his arms and kicks his legs.  It's a good couch.

The other big thing that's happened since February is that I got a full-time job.  This has really thrown me for a loop.  I'd been freelancing for almost 11 years!  I was used to being able to pick up my kids, feed and shower Soren in the afternoon, and make up my own schedule.

The great thing about my new job is that it's REGULAR PAY!!!  Woohoo!  No more wondering what I'll be writing next or when I'll get paid for it.  When I was first offered the job, I was told I could work from home.  And while I can if needed, I've also been given a lovely office.  And I feel like a bit of a jerk if I don't go in and use it!  Plus, when I'm actually in the office, I'm constantly pulled into meetings.  So they kind of need me there!

I got the job at the end of April, when the kids were still in school.  So I would go in, work in the office until 2:30, zip home just in time for the bus to drop Soren off, give Soren his snack, and then drive across town to pick Moira up from school by 4:00.  Then Moira's finals came, and I had to pick her up at 12:30!  So I was barely in the office.  It was bananas!

Now it's summer, and I don't have to pick up Mo.  And I was feeling bad for leaving early when I knew there were meetings.  So we decided we should look for a caregiver for Soren.  Now, we haven't had someone helping us out regularly for YEARS.  Probably since Soren was 3 years old and started school.  And now we needed someone that could lift an 11 year old boy, diaper him, shower him (preferably), and feed him via a G-tube.  That's a lot to ask of someone!

But then we were watching TV and a care.com commercial came on.  I said to Moira and Aaron that there ought to be something like that for people with special needs.  Aaron said I should check out their site and see if that was an option.  Lo and behold, it was!!!  Even the option for someone that knew how to feed someone with a G-tube.  So I placed an ad for a worker that could care for Soren and within a day, I had numbers of people applying for the job.

After doing interviews, we hired a very nice woman who has worked with kids with special needs and the elderly.  She's totally comfortable with the G-tube AND she can give Soren his showers!  It's AMAZING!!!  Soren put her through a bit of "trial by fire" that she survived quite well (I will spare you the graphic details on that).  Was this intentional?  Was it him being irked that someone other than his parents was caring for him?  Who knows.  But the caregiver rolled with it and now Soren seems to trust her.

Now I don't have to stress about having a meeting at 4:00.  I know that Soren is covered and safe.  And even though it's an adjustment, I think it's a good growing experience for us all.

Amy  

Shorn Soren

Soren has always had a good head of hair.  And like many a kid, cutting Soren's hair has led to some challenges.  When he was little, I took him to children's hair salons.  But Soren didn't sit up on his own, so I would have to sit in the chair with him to hold his head up.  This led to us both getting rather hair.

Later, I took him to Supercuts or Fantastic Sam's.  The ladies there were very kind and would just cut his hair while Soren was in his wheelchair.  But they always seemed a little nervous around Soren.  It tended to be a stressful appointment for all involved--especially me.

So then I bought a pair of clippers.  I figured I'd save money and the hairdressers wouldn't look at me with pity.   I chose the #2 setting for the clippers and went to town.  But the clippers were noisy, so Soren wasn't very happy with this situation.  Which led to me not being very happy about this situation.  So then Soren starting going for long periods between haircuts.  Thus, his thick head of hair only got thicker.

During his haircuts, Soren would insist on putting his hands on his face, which got hair on his face.  He would move his head this way and that flinging himself about to try and avoid me.  The fact that I actually cut most of his hair and didn't take off an ear is a miracle.

Another problem was that after the haircut, there had to be a shower.  Talk about adding insult to injury.  First the buzzing and the hair.  Then the water.  What kind of torture was this?  But despite all the cussing and frustration, Soren was always happier once his hair was cut.

This went on for years until this past Halloween.  Soren was dressing up as Ferris Bueller.  It had been a bit since I'd cut his hair because I wanted it longer for Ferris.  But knew I couldn't actually cut it in a "style."  #2 clippers was my only skill level.  I did a Mohawk on him the year he was Puck from Glee and nearly botched that up.  So how was I going to get him to look like Matthew Broderick's Ferris?

Enter Randy Madden, hairdresser.  Randy had been cutting Moira's hair for at least a year at the same salon that I go to.  Moira loves him.  Randy is the coolest dude you'd ever want to meet.  He dresses like a rocker.  I think because he actually is a rock musician.  Moira hangs out with him and gives him crap the entire hour she's with him.  Seriously.  I've never heard a 14 year old give a grown man so much crap.  She tells him he posts too many pictures on Instagram.  She tells him he uses too many hashtags.  She basically schools him on how to be a better guy.  And he loves every second of it.

On days when I go to get my hair cut and colored without the kids, I've observed Randy cutting other kids' hair besides Mo.  Little kids.  Kids that, unlike Mo, wiggle around and really don't want their hair cut.  I figured if Randy could handle these kids, he could handle Soren.  So, for Soren's Ferris Bueller Halloween haircut, I went to Randy.  And, good gravy, I was the nervous Mother Hen hovering right by them the whole time thinking that Soren was going to give Randy hell the way Soren gives me hell.

But this amazing thing happened.  Randy, being the super mellow dude he is, wasn't fazed by Soren at all.  And Soren was completely on his best behavior with Randy.  It was like, "I'm hanging with this cool guy, Mom.  Back off!"  Plus, Randy has the quietest clippers ever, which really helped!  But Randy totally worked with Soren's wiggling this way and that and just talked Soren through the entire thing.  It was awesome.

So, I have packed up my clippers and now the kids get back-to-back appointments with Randy.  It's one less thing I have to do.  And totally worth every penny!

Amy        

Soren's Genetic Testing

For those of you who have not been reading this blog since forever or may have forgotten the many details of Soren's journey, let me do a little review.

WAAAAAY back when this all began, we did a few genetic tests on the boy.  Because Soren had Infantile Spasms to begin with, the first candidate to check for gene mutation was the ARX gene.  (I mean, obviously?  Right?)  Soren's ARX gene was in perfect form.  Then along came CDKL5 (STK9, if you're nasty).  That test was done in late '06.  But the results came back in '07 saying that Soren did not have this gene mutation either.  So then we just had to wait until another "seizure disorder gene mutation candidate" came along.

Or did we?

Fast forward to 2013 when my cousin Brad and his wife Christy told us about an institute that was doing genome mapping for children with rare genetic disorders.  Hello?  Sign us up!  So after a fun afternoon of cheek-swabbing, they mapped my genome, Aaron's genome, and Soren's genome so they could compare the three against each other.  And then over this Thanksgiving, we got the results!  (Don't be jealous of our holiday fun, people.)  

The most likely cause of Soren's seizure disorder appears to be a mutation of a gene that neither Aaron or I have, making it something singular to Soren.  So we don't have to worry about Moira having this mutation, which was one of the reasons we wanted to get the test done.  The mutation would have occurred REALLY early when he was developing.  It could have even been a mutation in my egg or Aaron's sperm.  One of those things we may never know.

Now why do they think this is gene mutation is the cause as opposed to the other possible candidates?  Well, when they did some searches, they found two other children with this same gene mutation that also had 1) Early onset seizures 2) Hard to control seizures 3) Developmental delay.  Now, two other kids is obviously not a lot.  But it's a something.  In order to confirm that this is truly the gene and not just a Red Herring, more kids with unknown causes for their seizure disorders would need to test positive for this gene mutation.  But, it's interesting to have a possible answer to the question after all these years.

Oh, and I'm not revealing the gene's name because the doctors have official stuff to write up and I don't want it "spoiler alerted" by some overeager mom with a blog.  But if this ends up becoming official, I'll blog about it agin.  And make up T-shirts with gene name on it.  

I'm not kidding.

Amy 

Soren Update Summer 2014

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
   

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:

• 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.

It's been really amazing.  We're also currently trying to wean Soren off of one of his longtime meds that conflicts with this new medicine.  It's a slow process because every time we drop Soren down a 1/2 tablet, he has withdrawal seizures.  So we're seriously dropping down 1/2 a tab only one evening of the week and then don't drop it down another 1/2 tab for 3 weeks.  This gives his body time to adjust.

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

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.

1. As noted above, Soren has been covered by Blue Cross since forever.
2. 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.
3. This supplier claiming that there have been no letters of denial from Blue Cross is an absolute fallacy because... 
4. I knew for a fact that these letters exist because I HAD ONE IN A FILE IN MY HOUSE!!!

All I could think was, "I've been here 45 minutes and these guys have managed to dig up another problem.  I didn't come here to prove anything.  I didn't bring my Incontinence File full of information.  I certainly didn't come here for a fight!  I came here because their delivery guy CAME TO MY HOUSE!!!  WITH THE WRONG ORDER!!!  Why am I suddenly the one having to wait?  And once again, why I am the only one that can provide information again?!"  So, at this point, my FACE WAS ON FIRE!!!!

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

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:

• 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

All of these seemed to have some sort of effect for a short period of time, but then they would wear off and Soren would start seizing again.  

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

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

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

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

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.

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

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.

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

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

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

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!