Almost Christmas Already???

First things first, our family had the most amazing Thanksgiving.  Beans being able to eat made it one of the happiest days ever.  And yes, the pumpkin pie was his favorite food.  He's got a bit of an obsession now.

The dietician at his GI office was able to find a more palatable dairy based formula without corn syrup in it (corn makes him very sick - and it's the top ingredient in Pediasure).  It's called Nature's One Pedia Smart and it comes in both chocolate and vanilla.  He likes both, but prefers the chocolate. We're still in the early days, making sure he tolerates it okay but so far so good. He's inching closer to getting his feeding tube out one day.  He still gets at least 3 tube feeds a day, but that's half of what he used to get!

As for K, she's doing pretty well at the new school.  Currently she's tackling her 2 xs tables and working hard on them.  The new school is much better adapted to what she needs and she's doing much better.

Healthwise, we're back to sorting things out again.  She's had some increased obvious seizures as well as other signs that she may have some seizures we can't see.  Before increasing her meds, her neurologist has ordered a 24 hour inpatient EEG so we can hopefully get a better idea of what's going on inside that head of hers.

Of course I can't leave off the fun stuff.  A few days ago the kids and I made a gingerbread village.  They each got to decorate two houses that now decorate our dining table.  Next week Beans has a holiday concert I'm looking forward too.  I hate being crowded into the auditoriums with all those people, but I love seeing him up on stage so I can't wait.

Wishing everyone a happy holiday from all of us.

HUGE Day for Beans!!!!

Beans GI just called.  He has passed almost all foods!  His eosinophilic esophagitis is in remission!  He now has all foods allowed except corn, soy, chicken, fish, watermelon and nuts!!!!  His biopsies came back clean with the exception of showing a little reflux!  The GI was going to put him on Pediasure by tube and mouth, but the second ingredient is corn.  The nutritionist will be calling soon with our new formula options.  Even though he has so many options, and eats so much, the kid can't gain weight without the tube feeds so we'll see what they recommend.  I love being able to feed my son and he loves it even more!

Another Month, Another Scope

Beans was totally not thrilled at the prospect of yet another scope.  At my best count he's had probably somewhere in the neighborhood of 40 scopes in his lifetime. At this point it's not the scope itself he's afraid of, but he's not a big fan of ivs and he's terrified he'll lose another food.  This time went much easier.  For starters he got a pre-op room with a tv and spent his time watching his favorite shows instead of being anxious of what was about to happen.

Then he got changed and was burrito'd in a nice warm blanket.  Always a good thing.  Notice his eyes are still focused on his show.  Lol.

This time his GI decided to use a different kind of anesthesia.  Normally his IV is started in pre-op, he gets emla numbing cream and versed to help take the edge off and help with anxiety and then is given propofol in the scope room for anesthesia.  He's anxious the whole time and wakes really upset.  This time the GI decided to use a different kind of anesthesia.  No IV beforehand, laughing gas then gas anesthesia and the IV was placed after he was asleep.  No anxiety, no pain, and I got to stay until he was completely asleep.

When he started to wake up, and after he was extubated, they called me right back, so he never even knew of a time I wasn't with him.  His heartrate also stayed in the 60's instead of dipping into the low 40's.  He didn't need any oxygen after he woke up like he normally does either.  So soon as he was awake (which came quickly) he got to sip an icee.  He held it down so the IV came right out.  No prolonged monitoring needing.  I think I like this other way of doing scopes just as much as he does.

The initial verdict is that his esophagus and stomach look great.  We have to wait for the biopsies to come back next week for the final report.  Then the GI will call with the next step.

Apparently Beans has a very recognizable name.  Two child life specialists and a few nurses saw his name in the pre-op area and stopped by to say hi.  This was his initial response:

he chilled out each time and would finally say hi and talk to them.

Here's hoping the biopsies come back with 0 eos and we get to start on the next step of his treatment.

A New Start and a New Concern

The view out our door.  Beautiful.

With Halloween just around the corner things are transitioning here at home too.  In the morning K starts her new school.  We went Tuesday for the intake and to let her meet her new teachers.  This new school looks to be much more fitting to her needs.  I almost feel guilty for fighting it at the beginning of the year.  Hopefully this new start is just what she needs to go back to that happy, successful, learning child I had last year.

I talked to her teacher from last year and found out they have a picture of K up on the wall.  Her teacher was amazing and so special.  She has told me several times how special K is and how much she helped her become a better teacher - and the feeling is the same here.  Ms. G helped K become a better student, and a better person.  I know we can't go back to that right now, but if we can even get someone who understands K and is willing to work with her - which it seems the chances with this new school are much better - then we'll be back in a good setting.

Ready for her big day tomorrow, K fell asleep sitting up with her notepad and pen in hand. <3 p="p">

As for the little guy - Beans - we have a new concern on our hands.  A couple weeks ago I noticed a lump on his collarbone.  It was tiny but definitely there.  I had the school nurse look at it and she said if it didn't get better in a couple weeks to take him to the pediatrician.  Not only did it not get better, it doubled in size in that time.  It's still tiny, but not as small as it was.

Today we went to see what the doctor had to say.  She saw it right off, it's rather prominent as it sticks right out from the bone.  She wasn't sure whether to order an x-ray or ultrasound so she went and called someone to consult.  They told her that since it's so small we can wait two more weeks.  If it doesn't get bigger it's just a strange Beans thing but no big deal.  If it grows at all then we have to pursue more testing.  For now its called a bone mass.  Obviously we're hoping for no growth.

Tonight Beans sleeps soundly, unaware of what a mass can mean, and I hope for the best - for no growth.

And Grief Turns to Action

This post will have to be rather sketchy on the details due to all that's happened, but let's just say suddenly I'm extremely happy K will be changing schools.  On Tuesday after the PPT meeting, she was very upset when I went to leave.  Crying hysterically and grabbing for me.  It broke my heart to walk out the door and leave her at school, but I knew she needed to be there.

A note home that afternoon let me know the extent of her upset.  The two hours after I left were spent with K in tears and unable to calm down.  Instead of helping her in the autism classroom as was the point of the autism program as I understood it she was taken down to ISS (in school suspension).

I can't share what happened next but by the time she came home she was bruised on both elbows, a handprint on her forearm, a bruise on her stomach and bruises on the back of both knees from being shoved down on a bench.  Let's not forget the terror she now has about being arrested for crying thanks to comments made by the staff.

Today I went through the steps of our end of the investigation and the proper authorities are doing their part.  Instead of grieving her failure at this school I could not be happier to get her out of there and into the other one.  I can only hope she has a better experience there and that we can start making up some of the regression and fear that has been instilled.  Bruises fade fast, fear not so much. :(

Grieving

Something I learned in therapy over the past few months is that having a special needs child is like a grieving roller coaster.  Sometimes you have an up and are celebrating a milestone.  For instance, a couple weeks ago we celebrated K's (formerly Little Man) 13th birthday.  She had an amazing party with the most beautiful cake from an organization called Icing Smiles.  She's very much into the My Little Pony: Friendship is Magic series and her amazing baker made her a Princess Cadence wedding cake from her FAVORITE scene in the whole series. 

We had a beautiful party with My Little Pony decorations, a Pinky Pie pinata, and a game.  Her cousins came from eastern Connecticut, our family friend P came and Grandma D was here too.  Her day couldn't have been happier.

That was the high.

Not ten days after and we're at the crushing low.  This year I fought very hard for K to be in an autism program at the new school.  She's been in full time self-contained (full time special ed) classes for basically her entire school career, with the exception of 2 weeks in third grade that were a terrible mistake.  The new school district doesn't "do" self-contained so her therapists, former teachers and I thought the autism program with assisted inclusion (an aide with her and a few other autistic kids in the regular class) would be the closest thing to a best choice available.

Clearly this was a big mistake.  I'll spare you most of the details, but K cannot handle the constant transitions of changing classes, she cannot handle the noise and stimulation of the large class sizes, and she cannot handle not having a "home base" to go to to be able to calm down.  Things we were assured would not be problems when agreeing to the placement.

One month into school and sweet K has to make another big transition - we have agreed it's in her best interest to change to another school.  This new one will better meet her needs, but it is proof again that she cannot handle any sort of inclusion classroom and needs the full support of self-contained. I know it may seem silly to be grieving another failed placement when we knew this was a chance we were taking, but it breaks my heart to see this fail in 8th grade.  She only has a few short years left of school.  She isn't going to catch up to her peers.  There's yet more accepting to do.  It is sad.  It's heartbreaking.  Yes, this too we'll get over and find more things to be positive about, but at the same time this deserves it's time and place to grieve over.

K should start at the new school within a few days.  I hope she can find the support she needs.  I love her so much and just want to see her happy and thriving like last year.  I hope this is the next place she'll find it, and if not, we'll search for the next home base.  Through it all though I've learned it's okay to grieve, it's healthy even, and things will get better and we will celebrate.  That is life with a special child and I love mine so much. <3 br="br">

Oops...over a year?!?

I can't believe it's been over a year since I updated the blog.  So much has happened in all that time.  Let's see if I can do a run down.
    November 2011 - Little Man had another scary seizure that may have been a mini stroke.  Another ambulance ride.  Another scare.  In the ER they had a hard time waking him up, but eventually he was able to answer questions so we got to go home.  I'm very happy to say that's been the last seizure he's had.  He's on a couple meds that control them, but whatever.  Let's just keep those seizures away.
   November and December were also full of medical tests and appointments for Little Man mostly that kept us busy.  MRIs, blood work, upper and lower scopes, I can't remember it all.  School was good dealing with all the days missed for appointments.
   Early 2012 gave us the news that Beans passed his first food! He really wanted to try cheese (dairy) but was so afraid he'd fail it that it took days and a lot of convincing for him to even take his first bite.  When he finally was scoped and biopsies were taken, the big news came that he PASSED.  I had perhaps the happiest kid anywhere.  Since then he's added wheat and is currently trialing eggs.  He'll have another scope again soon, I'm guessing November, to see how those eosinophils are doing.
  The first real birthday cake in years was amazing!
  I think this is the first time ever that Little Man's been more complicated than Beans. 

 Last day of school pics for both :)  First is Blade (3rd from the left) and 3 of his friends.  Next is Koty, red-eyed from crying, and his teacher, Griff, who we'll both dearly miss.

  

  We're in the middle of another run of appointments for Little Man.  Pediatrician for what was supposed to be shots, but turned out to be a chest cold with a surprise gift of a new nebulizer for each kid since ours died the night before.  Neurology is doing 6 month follow ups but as long as the seizures stay in line we're just following along there.  The essential tremor is still there, severe as ever but we're not adding an additional medication to treat it right now.  Psychiatry's biggest concern right now is getting him to sleep.  That may sound trivial, but without sleep everything else goes down hill.  Urology is in a few days to follow up on things in that department.  Today was supposed to be an appointment with orthotics but they rescheduled for the 12th.  Little Man definitely needs things changed with his AFOs.  He's able to twist his ankles in his current ones and is having pretty much daily knee and hip pain.  So we'll get that figured out in a couple weeks.  In October both kids see GI and we'll see where we go with their issues from there.

   I can't believe we're just over a month from Little Man's 13th birthday!!!  I think he's going to want a My Little Pony theme, but we'll see.
 
 Thanks for checking in on the kids again.  I will try to get better at updating the blog again.