Part of Emma’s diagnosis of Septo Optic Dysplasia (SOD) is that she is hormone deficient.  So we replace the hormones her body doesn’t make, or doesn’t make enough of.  She gets cortisol replaced, thyroid, and growth hormone (hGh).  hGh is, of course, the drug that’s been in the media for being used by many athletes to “enhance” their performance.  In actuality, hGh just really helps with recovery.  Period.  With Emma, hGh doesn’t just help with linear growth.  It helps with overall growth of her body; organs, tissues, bones, etc.  The insides of the insides.  So it’s very important she receives her shot every night.  When I first found out we had to give her a shot every. single. night. I was mortified.  I actually couldn’t give her the shot until about 1 month post diagnosis.  I just couldn’t bring myself to do it.  We’d have to hold her down.  I’m not sure how long the holding-down part lasted, but now she thinks nothing of it.  In fact, she rolls up her sleeve and sticks out her arm.  Because, you know, she’s a champ.

So anyway, on Tuesday, Emma’s “specialty pharmacy” called requesting I refill her growth hormone.  It is a nice courtesy that they call me to remind me it’s time for new hGh.  I can’t complain there.  So I chatted with them, giving them all of the same information they’ve received for years.  Nothing has changed, not even the dosage this month.  Anyway, whatever.  It’s protocol.  I get it.

In 2 days, the shipment arrives.  A huge box. Containing medicine.  See it? No? Yeah, the boxes are small.  The vials even smaller.

The vial in each box? They are 10 mg each.  That equals 25 days worth of medication.

They’re stored in the fridge.  At 36* F. Next to the 5 Hour Energy and the milk.

It’s stored next to the milk in a handy (and secure) carrying case.  That case goes with us anytime we go somewhere overnight.  Which means we need some good ice packs!

The needles? Those are 30 gauge and 8 mm long. They don’t hurt…I don’t think.  I’m too chicken to try it.  Pathetic, no?

The bill?  Yeah…that’s the doozy.  Keep in mind…this total is for 25 days of medication.  Not even one full month.

Still there? All I can say is Thank God for Medical Insurance. Period.

Because mine could’ve been better.  It was just one of those loooong days that ended more on a sour note.  However, I will say that I have learned from my mistake.  I will never schedule 3 appointments in one day.  Two were for Emma, so she missed school.  I hate taking her out of school.  Epecially now that she likes it.  The first appointment was Emma’s DDD support coordinator who comes and visits quarterly.  He’s the one who approves her OT, PT, Speech, respite/hab hours, so he’s a good guy.  We keep him around!  No big deal.  Emma got to watch TV the whole time he was there.

Quick little jaunt to Nordstrom’s Rack (i love you, rack!) for new kids tennies.  If Emma’s going to start walking again she needs some good tennis shoes.  Check!  And a bathing suit on clearance (you’ll understand why below).

Next was her endo.  We also see her quarterly.  I was a little nervous about the visit this time around.  Perhaps you’ve noticed that Emma’s gained a bit of weight recently.  I was a bit nervous to see exactly how much she has gained.  Ready for this? 22 ½ pounds in 3 months.  Let me repeat that in case you thought you misread.  22 ½ pounds in 3 months. The good news in that is that I’m not going crazy and she really was getting heavier.  The bad news is that she gained 22 ½ pounds in 3 months.  Who does that?  Emma.  Courtesy of Risperadol.  It’s that new mood “stabilizer” med we started at the beginning of the summer.  Refresh your memory here and here.  I knew a possible side effect was increased appetite.  But holy cow!  Endo not pleased.  Reassured her we’d “fix” the situation.  Left feeling a little deflated.  I mean, I don’t even have ripped arms to show for all that carrying of Emma I do!

Oh, did I mention we had a meltdown at the endo?  Um, yeah.

Next up was lunch with my cousin.  Yay!  Emma ate great.  Surprised?

We headed to the psychiatrist next.  Lucky for me I didn’t cancel that appointment!  She noted the weight gain with a little less concern than the endo.  But she is a very agreeable doctor and when I give her my two cents she really listens.  We agreed we’d start her on something new.  Guess what the side effects are? Increased appetite.  Awesome.  Apparently all the drugs in this class have that effect.  But, again, it’s worth the shot.  You never know what side effects your kid will or won’t pick up.  So, I’m anxious to see how this new one goes.  Our “goal” for Emma is to lose 5 pounds by her next appointment in December.  Once she’s active again, I’m thinking that will help shed the weight.

Emma was really really ready to go at this point.  It had been quite a long day.  We hopped in the car and headed home.  For some reason we got stuck in rush hour.  I’m not sure why; it was only 3:30.  And while in said rush hour we got bumped from behind.  Pulled over and this ladie’s front bumper was hanging off of her car.  I was scared to look at mine.  Here’s what I saw:

See that little nick? What?  Can’t see it?  Whatev.  It’s there I promise.  Anyway, she got a little pissy with me when I told her I was going to call the cops (per my husband’s request).  And then I got snippy with her and told her not to get pissy with me because she was the one that rear ended me!  Anyway, thank you to Phoenix’s finest for helping me out and looking cute and smelling really good when it was 105* outside.

It was all I could do to get home and lock myself in the house.

Seriously, you would’ve thought it was a Monday today! Here’s to Wednesday, visiting my aunt, and getting my Etsy on!

And how was YOUR day?  

p.s. there’s still time to visit my Etsy shop and save 20% (when you enter NEWSHOP20)!!

I have to say that I’m 99% certain that the majority of Emma’s bad moods is stemming from the hydro-codone.  I didn’t realize how much of a mood alterer it could be (yes, alterer is a word since there’s no red squiggly line under it).  So back to the meds…we’ve been slowly decreasing number of doses she gets of her hydro-codone and valium in a day.  On the one hand, I don’t want my daughter to be drugged.  On the other hand, I can’t have her in pain because that puts her body under stress and she doesn’t produce cortisol and yadda yadda yadda.  It’s a fine line.  Anyway, happy to say that we’re off the hydro-codone completely and only on valium before bedtime.  Not to shabby for nine days post surgery.  In my opinion.  And every day seems to get better and better.  Another probable reason for that is the outings we’ve taken.  We finally got out of the house on Tuesday, after being home-bound since Friday (when we only came home from the hospital).  We were all getting a little cabin fever.  On Tuesday it was Costco.  Wednesday, the mall.  Thursday (today), the chiropractor.  Yes, our backs are hurting already.  And we’re going to be proactive about it this time and see our chiro at least once a week.  And I got acupuncture too.  Love my chiro…peeps in Scottsday/ Phoenix can find him here.  Tell him Emma’s mom sent you.

So with all this said, I’m in a much happier place and so is Emma.  My blog was definitely becoming a downer, no?  I don’t like that.  It’s not really me. I’m feeling better about things in general.  I have some fun creative ideas swirling around in my head.  I’ve been in a baking mood.  Emma’s talking favorably about school again (being very specific about which school she’s referring to).  So things are on the up and up.  And I expect that to be a holding pattern!

Thanks for bearing with me, blog friends!  I appreciate it!

p.s. anyone have any experience selling goods on etsy?  I’d love to pick your brain!  Message me if you wouldn’t mind, at jessica@jumpingwaves.com  .  Thanks!

We have increased Emma’s dose for a second time just to make sure we’re getting the maximum potential out of the medication.  I am very specific in that I don’t want my daughter “drugged” or “numb” to anything.  I’ve seen that with other medications and it’s not fun.  But it is not out of the ordinary for me to want to “take the edge off”.  At her age, there are certain behaviors we should not be seeing right now.  I think the changes my daughter has made are night and day.  She’s polite, sweet, compassionate and cuddly.  Not that she wasn’t any of those before, but before it was more forced or reminded by us.  Now she does it willingly.  It’s the sweet little girl I always knew was in there.  I don’t know that we need to increase her dosage anymore.  She’s still on a relatively small dose.  But I don’t want to push the limits if I feel it’s not necessary.

Below: picture of Emma holding her little brother who is 3 days old.  Precious.

7-2-06

On another note, I leave for Paris in 4 days.  Eeek!!  I have a mix of emotions…excited, happy, nervous, anxious.  Butterflies in my tummy more and more.  I’ve never left my kids this long.  And I haven’t been out of the country since having kids.  But I keep at the forefront of my mind all of the wonderful experiences I’ll have.  And that creates excitement.  Last night I had a dream I slept all through the flight(s).  I wish.  Why haven’t they invented teleportation yet?  Since 14 hours on a plane is a must in order to get to our destination, I am thankful for these things: family to keep me occupied, iPad, Bose Quiet Comfort 15 headphones, books on iBook, Ambien, and Xanax. (the last two not to be mixed together, nor with the free alcohol I hear you get on international flights)

Some necessities for travel…thought I’d share.  Water bottle (see how cute it is?) if tap water is declared potable (Paris is). Large reusable bag, especially useful in Europe. Travel candle, Scentsy.  You never know how your accommodations will smell.  Laundry bag. Umbrella. Baby wipes, you just never know.  Learned that lesson in Russia. One nice pair of shoes to go with multiple outfits: hello Tory Burch! Hat.  To the right…rolled clothes…to save space.

Counting down while packing up!

Where’s the most exotic locale you’ve been to?

We’re on day 11 of Emma’s new medication.  And it’s working beautifully!  I think we could go up a bit more in dosage, but I will give it a few more days then call her doctor to see what she says.  She’s on a very low dose, which is how I like it, of course.  But to see the appropriate benefits, I need to make sure she’s on a dosage that’s congruent with her body weight.  Speaking of which, HOLY COW!  The girl is eating like a champ!  This is good for a few reasons. 1) Sometimes it was like pulling teeth to get her to sit with us and eat at the dinner table.  We always give her two options: she can eat at the dinner table with the family, or she can eat on the “spot” (which is our time out).  She knows she’s not in time out, but sometimes she needs to take a break from the stimulation.  Now I’m usually giving her seconds.  And she’s trying new foods, namely new veggies.  Yay!  2) She can become hypoglycemic quickly, so with this new appetite, we don’t really have to worry about that.  Of course, along with this new “hunger” comes some concerns.  I do need to watch what she eats.  I try very hard to make sure there are plenty of healthy snacks lying around.  I don’t stock much junk food anyway, because I’m the one that will eat it.  But now it’s even more important to have a healthy kitchen.  The kids just finished lunch and Emma had 2 turkey dogs, 2 helpings of cantaloupe, 2 glasses of milk, and then she declared she was still hungry and wanted a snack.  I had some carrot sticks cut up and she started munching on those!  This is after a breakfast of 2 scrambled eggs and peanut butter on a bagel thin.  And a mid-morning snack of apple slices.  Holy cow!  I’d be stuffed after all that food.  What do you think, though…did she eat healthfully today (so far)?

Her sleep habits have become much better, too.  She’s going to bed at a reasonable hour and sleeping in until a reasonable hour.  She’s getting about 11-12 hours of sleep.  I can’t complain!

And while she’s still having temper tantrums, the severity has decreased, as well as the length.  We can calm her much more quickly and usually divert her attention.  I couldn’t be happier with her progress!

Thanks for all of your tips and well wishes…I think we found a “keeper”!!

She shoots...

…she scores!

But actually, yesterday got away from me.  That’s why I didn’t post.  I completely forgot about this ol’ blog.  Also, I don’t want to jinx myself.  Brett and I hesitate to speak any words about it, for fear we’ll scare the changes away.  I’m talking about Emma.  And her new med.  It seems to be working!!!  She is calmer.  She’s not (as) defiant.  Her aggression has severely decreased.  She’s chatty, social, and more independent.  She hasn’t been an insomniac since starting the med.  In fact, quite opposite, both days this weekend she slept in until 10:30.  The doctor did warn us that she would be more tired.  I think it’s the body metabolizing a new medication.  It happens frequently with her because she is on so many meds.  Oh, and her appetite has shot up.  I was warned of this too.  I have made sure to keep healthy food options available.  With this increased independence comes the need to “get things herself”.  Those things need to be healthy!!  Not that I stock up on junk food here (lest I be the one eating it!).  I think we’re past the exhaustion stage for now.  She was up at 5:30 this morning.  But she read quietly downstairs until about 6:00, which is a first. Usually she’s bouncing all around.  And breakfast consisted of cheesy eggs (2 scrambled eggs with cheese melted inside) and peanut butter on a bagel thin.  She’s going to start eating me out of house and home!

So, with this exciting new development, we carefully move forward with life.  We’re cautiously optimistic.  This weekend we’ll attempt more social activities to see how she handles them.  I am also awaiting an email from the district director of SpEd to set up a meeting.  Hopefully for next week, or at least before I leave for Paris.  I will keep you posted!

p.s. her seizures have also dramatically decreased!!

checking out the view

If you read my posts from yesterday and Friday, you know that we went to the Grand Canyon this past weekend.  We had a great time.  I won’t lie, there were some bumps in the road.  Those bumps were called zoloft and concerta, 2 new medications Emma was starting.  The big debate between Brett and I (actually not a debate, more like a discussion or a decision) was whether to start it before or after our trip.  We didn’t know how our trip to the Grand Canyon would go.  And we also had reservations at El Tovar to end the day.  It was going to be a long day, and the kids would be with us, of course.

We decided to try the medication on Friday.  We decided that it couldn’t hurt.  There was already a good chance her day would be off since there was no school on Thursday.  For the majority of Friday, she was dazed and a bit lethargic.  I learned that is called the seratonin effect.  She was so out of it that she spent the majority of the day in my classroom and then I took her home when I got off of work (talk about the benefit of working at their school!).

Fast forward to Saturday.  She was having mood swings.  Lots of them.  They made me very nervous.  The fear of taking an uncontrollable child to the Grand Canyon (aka the biggest hole in the earth) was very present.  She was to hold an adult’s hand at all times.  I didn’t want her close to the edge at all.  To sum it up, we made 4 stops on this tour that my brother took us on.  Her behavior was erratic during 2 of the 4 stops.  On the way to the last one, we had to bribe her to get some protein in her…cheese and ham slices.  It worked, spiked her blood sugar up, and she was golden.  We were able to watch the sunset in peace and quiet (oh yeah, except for the 4 year old who was whining).  Dinner at El Tovar went great.  No issues with her behavior, no issues with her eating.  She ate like a champ and sat quietly while the rest of us finished.  Not bad for a kid who’s used to eating dinner by 6:00 every night.

Okay, so here’s the big question: How do you enjoy the moment when your thoughts, concerns, anxieties are with your child?  Is it possible to focus on your children while you enjoy the day and the moment?  I don’t feel like I was fully able to savor the sunset at the Grand Canyon because I was a little nervous that my kids might run over the edge.  Just a little.   Have you ever been in a situation like this?  Perhaps you had your kids at a wedding.  Or on a special trip.  The circumstances are numerous.

How would you, or how did you handle it?

Wow.  I can’t believe I haven’t written about this.  Emma’s on a new medication!  It’s kind of big news around here.  Well, you know how she’s swallowing pills now (another milestone that deserved its own post, by the way).  Since she started swallowing pills, we decided to try a medication that we once tried about a year and a half ago.  This medication was wonderful.  It gave her the focus and clarity she lacked( by the way I’m talking about an ADHD med), and it didn’t cause her to act (or feel) drugged or lethargic.  I. Loved. It.  Problem was, she didn’t love it.  This pill came in a capsule form, so back in the day (you know, pre-swallowing-pills), we would empty the capsule and dissolve it with her other pills into Sunny D (which is, by far, the sweetest tasting juice I have found).  This pill was so bitter, she refused to take it.  She wouldn’t swallow the syringe with the dissolved medicine.  Brett and I tried it.  We didn’t blame her.  The stuff was horrid.  The most bitter and metalic tasting medicine you could imagine. Which begs the question, if you’re gonna make a kid’s medicine, please make it palatable.  Am I right?  Whatever.  That’s another story.

Okay, so back to the present.  The girl is swallowing pills!  We thought, “hey, let’s give this old medication another try!”  And we had precious few days before school started to get this medication in her system.  So we tried.  We waited for a few days.  We increased the dosage (yes, this is all under her psychiatrist’s supervision). It started working better.  In the first week of school, we had her taking it in the morning.  She took it in the morning last time, though the doc warned us that this could cause drowsiness.  Duly noted. After getting up every morning last week around 5:30, and falling asleep every chance she got in the car, we decided to switch to a night time dosage.  She slept in longer.  She wasn’t falling asleep in the car.  She didn’t want to watch TV all day.  She’s got more energy.  And….(drumroll please)…she’s got that focus that we’ve been waiting to see.  Hallelujah!!  Now, we’re not holding our breaths here.  She’s still getting acquainted with the school schedule.  Things could change.  But, so far so good!  I only hope this is the beginning of a successful year in 1st grade!!

After I posted about Emma’s ADHD, it occurred to me that maybe I should write about medication.  It’s kind of a hot topic, but one that’s important nonetheless.  If you’ve been reading my blog, you’ll remember this post about all of Emma’s medications.  I choose to see the medications that she takes for her hormones simply as replacements for what her body doesn’t make naturally.  I don’t really count them as medications in the traditional sense.  Of course then we have her anti-seizure medications.  Those are a given.  There’s no need for a second thought on those.  However, when it comes to ADD/ADHD medications, there is a lot of debate out there.  I do believe kids are over-diagnosed with ADHD.  And I believe they’re over-medicated.

When we sat down to hear the results of Emma’s evaluation, the doctor did give us her opinion.  She said with all of the “therapies” she is in, and given the type of ADHD and the symptoms, she did feel that medication was best for her.  And so we went with her opinion.  We also felt strongly that if Emma should receive this diagnosis, that we would  put her on medication.  We looked at it from a few different angles.  First, we had a concrete answer for how much Emma was delayed (globally).  We wanted her to have the chance to catch up to her peers, if possible.  And our hope was that with medication, she might be able to catch up academically as well as socially.  She would have a bit of the focus that her peers had.  Another thought we had was time.  Emma receives OT, PT, and speech…all at home and school.  She’s also in ballet right now.  Quite simply, there aren’t enough hours in the day to add another therapy that might help her focus.  We would be looking into behavioral therapy, a provider, and a location (if a provider couldn’t come to us).

We had some ground rules to follow that we gave ourself.  For example, if a medication altered her normal behavior in any way (with the exception of her focus, of course), we wouldn’t continue on with it.  If the medication had any side effects like headaches, etc., no dice.  If the medication tasted horrible (as the Strattera did), we would stop taking it.  Fortunately the patch has worked really well for us.  She doesn’t behave “drugged” like I’ve seen on some anti-seizure medications.  She can’t take it.  The only side-effect we see is that her skin is red where the patch is adhered to.  That’s a normal side effect and doesn’t bother her in any way.  It works for us right now.  It won’t always work for us (I don’t think, anyway), and then we’ll try something new.  But for now, it does the job.

I fully support any parent in whatever decision they feel is best for their child.  Every mom wants what is best for their child…to make sure their quality of life is the fullest it can be.  If that is behavior modification, that is great.  Some people choose a diet change (such as GF/CF), and that is super.  Our way is the medication way, and we’re sticking with it!

What’s your opinion on the subject?  I want to know!

It’s something I’m learning about each day.  It ‘s also something I have known a little about for a long time.  As a teacher, you can’t escape it.  Also, as a teacher, you see the “real” cases versus the “not-so-real” cases as ADHD and ADD is so over-diagnosed.  I did learn that there is technically only one term: ADHD.  There are variations as the patient doesn’t always have the “H” (hyperactivity) in his/her ADHD case.

I have suspected Emma had true ADHD for quite some time.  Getting her to focus made me want to bang my head against a wall.  Literally.  And it still does, truth be told.  She didn’t have the “H” in her situation, nonetheless, ADD was hard enough without it.  The interesting thing is that I had more than one healthcare provider tell me “NO”.  They didn’t think she had it.  And, literally, one developmental pediatrician told me this after Emma’s evaluation in which Emma was ALL over the place and not able to answer any questions.  I still wonder if they denied my beliefs because perhaps they thought I was “just another mom” looking for that diagnosis.  That maybe I was “just another mom” who couldn’t handle the normal behaviors of a preschooler.  Each time they would tell me no, I would try to push it into the back of my mind…try to forget about the feelings that I was having such a hard time ignoring.

Finally I had enough.  I decided I needed to do more.  I made an appointment with a neuro-psychologist at PCH.  Joy Goldberg. I ♥ Dr. Joy.  She is so kind and compassionate…and that’s with me the parent!  She did amazing with Emma.  She ended up doing 7 hours of evaluation over the course of 2 different days.  She did cognitive, behavioral, speech, focal, everything.  And in the end, we sat down for at least 1 1/2 hours as the parents and she went over everything.  We learned just how delayed Emma was.  And finally, I got the diagnosis that I knew was coming.  ADHD (without the H).  It was such a relief for a few reasons.  First: That was the only thing “wrong”.  In my mind I was wondering if it was something worse, a confirmed case of Austism (something I’ll save for another post).  Of course ADHD has no easy “cure”.  But it was something we could work on.  Second: I was so happy that I wasn’t going crazy!  That my motherly instinct was spot on.  To all those naysayers, I kind of want to say, “told you so!”.  But I’ll refrain!

Emma’s been on a myriad of medications to try to help her focus.  One of our biggest problems is that she can’t swallow pills.  Remember this post?  So unfortunately, the medicine that worked the best, also tasted the worst.  And I tasted it.  It was truly horrible.  We hope to work on pill swallowing this summer and perhaps try Strattera again.  Right now she’s on a patch (yay! no pill!!) that sticks on her bum.  It’s time-released and works for about 9 hours.  It does pretty good.  You can see a HUGE difference when she doesn’t have her patch on.  But there are roller-coaster days at school.  Sometimes she has focus…other times she doesn’t.  At all.  And you never know what you’re going to get.

If you want to learn more about ADHD, Knowledge Safari has a great Friday Facts post on it today.  You can find it here.  And feel free to ask any questions!!  Emma and I are an open book!

Have a great weekend!