Sad Heart

Today I came home from a very difficult doctor's appointment for me and saw laying on the table K's homework.  For some reason it just broke my heart.  She's 13 and in 8th grade.  Her homework? A page of dividing by 2's and her spelling words:

• made
• song
• line
• drive
• awake
• hook
• shape
• cross
• heart
• vote

Usually I'm a really positive, go with the flow type, but tonight I'm taking my right to be sad.  After her EEG showed some kind of slowing that starts with a d and the rest of the results to be discussed at her next neurology appointment, I'm already sensitive in this area.  

What kind of real future does a child who is soooo far behind really have?  Will she ever actually catch up?  Will she make her own work arounds for so many things she doesn't grasp?  It's not for me to know now.  For now my job is to love and encourage and be proud of this amazing little girl I have.

Tonight's homework

Me: Spell heart

Her: hr...no...ha...no...hae...no...hrt...no...heat...no...heart!

Yes baby, heart.  Mommy's heart is sad tonight but tomorrow's a new day and we'll get there.

...And its Back to Full Tube Feeds

Both the kid saw their GI doctor today.  One was quick - K.  Still having her bad constipation issues, but found out we were doing her Miralax wrong.  Her favorite way to have it was in chocolate milk...and it doesn't work well in milk.  So now we'll be giving it in orange juice or gatorade and hope it cooperates better.

Then there was Beans.  We knew there was a problem from the first.  Weigh in showed him down 2 pounds since last time - 2 months ago.  This was with him eating 2 meals a day plus snacks, tubing 3+ feeds a day and drinking 3+ feeds a day.  Not what we expected at all.

This has happened every time in his life where we try to go to more oral eating.  Theoretically, calories are calories regardless of the type of food or the route (tube or oral) they come from.  Reality with Blade shows us this isn't the case for some reason.  This could be because his eosinophilic esophagitis is flaring due to something he's eating or the formula he's receiving, or because for some reason the oral calories are either being burned faster or not being absorbed.  Time will tell.

This leads us to our current plan.  Beans will be receiving 6 tube feeds a day of 8 oz each of his PediaSmart formula.  Anything he take by mouth - drinking his formula, eating a snack - anything will be extra calories.  Follow up in 2 months and hopefully see weight gain then.  Regardless he'll be having another endoscopy to check the state of things.  We're also trying to get him in to see an allergist in the meantime.  He has a few signs (a rash on his face, a cough that won't go away, etc) that something he's eating isn't agreeing with him and we haven't been able to figure it out.

At least he hasn't lost his food.  That's his biggest fear.  We'll see where all this goes but cross your fingers that he can gain weight and that the doctor doesn't have to take his foods away when she gets all the results over the next few months.

Tracking the Brain

To finally answer the questions "Is K still having seizures?" and "Are the seizures contributing to her other issues (learning, mood regulation, sleep)?" she had a 24 hour continuous EEG last night at CCMC.  She wasn't concerned at first and cooperated perfectly while getting all the electrodes glued to her head.

Robo-K...or Alien K as Beans preferred

 She even did well having a huge rope of wires connected to her head.  When bedtime rolled around, and we realized I forgot her teddy bear, her head was itching, and reality set in that she wasn't sleeping in her own bed she had some tears.  A snuggle session with mom and a rescue stuffed elephant by her nurse calmed her and she fell asleep easily.

She had to stay in bed for the full 24 hours as they have a camera on her to catch any signs of seizures and to correlate what they see on the EEG with what her body shows.  Thank goodness for Child Life - the entertainment, distraction and teaching experts at any good children's hospital.  They brought her art projects to do and, her favorite, a Wii to play.  She was quite happy to stomp on me in several games of tennis. :D

I'm not sure what the test showed - we'll get the results next week - all I know is the computer tracking her brain waves showed tons of 'events' and many times that of 'spikes.'  They had me bring homework for her to do so we can see what happens when she's doing school work.  Again, I don't know the results, but when she dropped her book and most of the times she lost her place when reading (happens super often with her and one of the big reasons her reading is so far behind) the EEG showed a ton of activity.  Does that mean anything?  I don't know, but I'm very interested to get these results.

Yup, It's Winter

This week has been hard on the little ones.  Beans started it off with a massive cough and high fever.  He finally kicked it with loads of albuterol and pulmicort breathing treatments and ibuprofen and tylenol kept the fever down to 101 for about 3 days.  Just get him ready to go back to school Tuesday and K starts with the cough.

K has been up both the last 2 nights coughing non stop with her fever shooting up past 104 while on meds.  Last night enough was enough and I took her to the ER.  The doctor thought her lungs sounded rough, but not too bad, but thought it would be good to rule out anything serious with an x-ray.  Well, as our family is now quite well at doing, we surprised the doctor with her having pneumonia.  Luckily the ER was absolutely empty at 4 am so we were in and out in an hour.  She now has antibiotics, cough medicine and continuing her albuterol breathing treatments.  No school until Monday.

Here's hoping I can keep from getting it.  Massive coughing would be torture with my headaches, that's for sure.

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.