She passed the 2's!!!

I'm so proud of K!  Halfway through 8th grade, today she passed off her twos time tables!  She's been working on them for ages and we're so proud she made it today!  For more good news she has had FOUR perfect days at school this week, one more day will make it a completely perfect week (completed all her work, good attitude type things).  I'm one proud mama today. :D

Beans and the Allergist

A couple weeks ago Beans had the much awaited allergist visit.  He got some good news - most of his food allergies are not the IgE type, meaning not the anaphylactic type.  He still has the latex and bee/wasp anaphylaxis to be tested further later.

In the meantime he has no additional dietary restrictions from this appointment, but the allergist wasn't confident enough to give new foods either.  Patch testing may be set up sometime in the summer.  He said that some GIs trust them and other GIs don't so he'll put Beans through it if she wants it, but not unnecessarily which I appreciate.

Unfortunately, despite the massive amount of calories he's consuming between orally eating and his 6 tube feeds, weight gain still eludes him.  I'm not sure what we need to do to get back to that steadily gaining kid again.  May's GI visit and scope may give us more answers.

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.