Ice Cream Please

Michael was very thoughtful today.  He was given money to go out to the ice cream truck with instructions to buy ice cream for his dad, me, and himself.  He came back with four.  Upon his dad’s questioning, he said, “We forgot Lizzie!”

Lizzie, who is tube fed, does occasionally enjoy ice cream.  Giving her food by mouth is not something we do extremely often because of her constant gagging (we don’t know where that food is going when she gags), but we do give her treats from time to time, and try food occasionally to see how she’s progressing in her ability to swallow.

Buying her ice cream from the truck is not something we usually do, because usually she can’t eat enough to warrant buying her one, so she usually just shares mine.  Her brother thought of her today, and had extra money, so he bought her a Jolly Rancher Cool Tube, (sherbet in a tube, basically a push-up  pop).

Well, you would have thought it was Christmas.  I’ve never seen anything like it… she grabbed it with two hands, shoving it into her mouth over and over.  She licked it.  She held it.  SHE SELF FED!  I was so excited.  And more importantly, not much came back out, and she didn’t gag.  NOT ONCE!  Maybe getting rid of the medicine we’re weaning is helping.  Maybe the allergy meds are making her less gaggy.  I don’t know.  What I do know is she thoroughly enjoyed that ice cream, then gave me a very wet, very sticky kiss as a thank you.  This was awesomel!

Cardiologist

Yesterday I got a call from Lizzie’s cardiologist’s office.  Because apparently I had the foresight to realize that I would forget when it was time to see her and made our yearly follow-up at last year’s appointment.I didn’t even have the appointment on our calendar.  This left me the fun task of trying to secure a referral in a day.  Thank goodness for our pediatrician’s office.  I called them at 11:20 to request the referral and they called me back at 11:50 to tell me it was taken care of.  They’re wonderful!

Lizzie sees her cardiologist for her bicuspid aortic valve; a condition which means that her valve has two parts instead of three.  What this means for Lizzie is that her heart valve works harder than it should have to and because of that can leak or become stiff over time.  So, every year we bring her to the cardiologist for inspection.

Two tests are always performed at our appointment.  An ECHO, where her heart and its valve are looked at with an ultrasound.  And an EKG, where leads are put on her, and they check the electrical activity of her heart.  Neither of these tests are invasive or painful, and if all goes well her appointment should be quick and easy.

However, with Lizzie you don’t always get what you expect.  At last year’s appointment Lizzie was mad that she wasn’t allowed to hold the probe with the lovely cord during her ECHO.  She was even more mad when she realized that she had to hold still.  To say that she screamed would be an understatement.  She screamed so long and so hard through the entire ECHO that she made herself sick and threw up.  I felt so bad for the poor technician.

Then Lizzie fell asleep.  The doctor came in to see her and she slept through the exam.  We told the doctor how Lizzie had been doing.  The doctor discussed with us Lizzie’s upcoming hip surgery.  She told us after the EKG if we didn’t hear anything from her that we should follow-up in a year.  Then she left the room.

In the few minutes it took the technician to come back in, Lizzie woke up.  This time it was lead wires she was not allowed to touch.  And, of course, restricted movement again.  She screamed through the entire EKG.  It was the same tech that had done the ECHO.  I felt so sorry for that poor lady.

That was a year ago.  We’ve come a long way since then, but Lizzie still loves wires and cords and still hates being restrained in any way.  I’m hoping tomorrow won’t be a repeat of last year, but I’m afraid it will.  Because of his work schedule, Daddy probably won’t be able to help us tomorrow like he did last year.  I dread this appointment and what it might bring.  As always, we hope for the best and prepare for the worst.

Wish us luck!

Cardiologist

Yesterday I got a call from Lizzie’s cardiologist’s office.  Because apparently I had the foresight to realize that I would forget when it was time to see her and made our yearly follow-up at last year’s appointment.I didn’t even have the appointment on our calendar.  This left me the fun task of trying to secure a referral in a day.  Thank goodness for our pediatrician’s office.  I called them at 11:20 to request the referral and they called me back at 11:50 to tell me it was taken care of.  They’re wonderful!

Lizzie sees her cardiologist for her bicuspid aortic valve; a condition which means that her valve has two parts instead of three.  What this means for Lizzie is that her heart valve works harder than it should have to and because of that can leak or become stiff over time.  So, every year we bring her to the cardiologist for inspection.

Two tests are always performed at our appointment.  An ECHO, where her heart and its valve are looked at with an ultrasound.  And an EKG, where leads are put on her, and they check the electrical activity of her heart.  Neither of these tests are invasive or painful, and if all goes well her appointment should be quick and easy.

However, with Lizzie you don’t always get what you expect.  At last year’s appointment Lizzie was mad that she wasn’t allowed to hold the probe with the lovely cord during her ECHO.  She was even more mad when she realized that she had to hold still.  To say that she screamed would be an understatement.  She screamed so long and so hard through the entire ECHO that she made herself sick and threw up.  I felt so bad for the poor technician.

Then Lizzie fell asleep.  The doctor came in to see her and she slept through the exam.  We told the doctor how Lizzie had been doing.  The doctor discussed with us Lizzie’s upcoming hip surgery.  She told us after the EKG if we didn’t hear anything from her that we should follow-up in a year.  Then she left the room.

In the few minutes it took the technician to come back in, Lizzie woke up.  This time it was lead wires she was not allowed to touch.  And, of course, restricted movement again.  She screamed through the entire EKG.  It was the same tech that had done the ECHO.  I felt so sorry for that poor lady.

That was a year ago.  We’ve come a long way since then, but Lizzie still loves wires and cords and still hates being restrained in any way.  I’m hoping tomorrow won’t be a repeat of last year, but I’m afraid it will.  Because of his work schedule, Daddy probably won’t be able to help us tomorrow like he did last year.  I dread this appointment and what it might bring.  As always, we hope for the best and prepare for the worst.

Wish us luck!

Purple Day

Today is Purple Day.  Since 2008, March 26th has been designated the Global Day of Epilepsy Awareness. We are all wearing purple.

Epilepsy awareness is not a question in our house.  We are aware.  It has us on our toes.  Every time Lizzie is too quiet.  Every time she makes an odd sound.  Every time she moves in a repetitive or rhythmic way.  Every time I hear crashing or bumping noises from her room.  I am aware.  I am running before I know why.  Then I do the checks.  Is she alert?  Is she responsive?  Can I distract her from the movements?  Is she breathing?  Is it time to call 9-1-1?

We are aware of epilepsy.

If she is having a seizure, I know the drill.  The first thing I do is check the time and grab the Diastat.  I move her to a flat, soft surface, and roll her on her side.  If she reaches 3 minutes of seizure with no signs of stopping, or if she stops before 3 minutes but then starts again, I give her the Diastat.  Then we call 9-1-1 and wait for them to arrive.  I sit with Lizzie and make sure she is breathing okay.  I make sure she is safe from falling or banging into anything.  I stroke her head and tell her it will be okay, even though I don’t know if it will, while silently praying to God that it will stop.  There’s no time to panic, there’s no time for tears, there’s just time for doing what needs to be done.  Once she’s in the ambulance, I grab her bag and medications, and if Chris is not home, I load her wheelchair in the van.  If he is home I ride with her in the ambulance, and he follows with the van and the chair.  If not I follow her in the van.  It’s not easy, but it has to be done, because I know if they release her she will not be able to go home without her chair, and if they admit her they may not be able to feed her without her chair because it’s far to easy to get tangled in a g-tube when you treat your hospital bed like a crib.

Epilepsy is not a joke.  Some people may think that seizures look funny or that the odd behaviors that some people exhibit when having a seizure are something to laugh at.  I will tell you, when it’s someone you love, it’s not funny.  When their lips are blue because they are not getting air, it’s not funny.  When their bodies a spasming uncontrollably, it’s not funny.  When they have to sleep for a day or two because they are so physically exhausted from the marathon their body just ran without them at the helm, it’s not funny.  When they are so buzzed on meds that they don’t recognize you (because the hospital had to administer horse-sized doses to your seven-year-old just to stop the seizures), it’s not funny.  When your child is still seizing a half hour or hour later and nothing is working, it’s not funny.  When they have to intubate your child and put her on a respirator because she is so medicated she cannot breathe on her own, it’s not funny.  Seizures are not a joke, seizures are true horror.  There is nothing more to say about that.

I wear purple today.  I am aware of epilepsy and what it can do.  How about you?  Are you aware?  Do you know what to do if someone has a seizure?  Do you know what a seizure looks like?

My daughter had seizures for years that no one believed were seizures.  Her lips would go blue.  She would make a clucking sound in her throat with her tongue.  They only lasted 30 seconds.  Then she would nap for an hour.  I kept saying these were seizures.  They happened so fast I couldn’t tape them.  By the time I called someone’s attention to them, they were over.  I even went to lunch with a friend once, and my daughter had one of these.  She saw it and said it didn’t look like a seizure to her.  But I was already looking at the clock on my phone and figuring out where the best place in the restaurant to administer Diastat was.  Later that day, she had a bigger seizure that landed us in the ER and it turned out her medications were low.  I finally figured out that these seizures were warnings that Lizzie’s medications were getting low due to weight gain.  Now we know, but we had to go through a lot of these to figure that out.

That’s the problem with epilepsy.  No one knows what it looks like, because it is different for everyone who has it.  The information is out there, but you have to get it yourself.  I’ve learned more from talking to other people with epilepsy than I have ever learned from the medical community.  That’s sad.

Epilepsy needs a cure.  Yes, there are medications, diets, surgeries, and surgically implanted devices, but a lot of these treatments have worse side effects than seizures.  Some of these treatments are not even available to patients due to conflicts with other health issues the patient may have.  My daughter has been on a medication for years that I know is holding her back developmentally, but is stopping her seizures.  Another medication she’s been on was lowering her blood sodium and possibly causing seizures.  Sometimes the treatments cause the very problem they are meant to stop.  We need something better, and we need it now.

I wear purple for epilepsy.  I wear purple for Lizzie.  Some day I hope that her epilepsy will be cured.  Until then, I continue to research, talk to others, and hope that things will get better someday.  I hope for a cure and I do what I can.

Cerebral Palsy Awareness Day

Today I am wearing green because it is Cerebral Palsy Awareness Day.  We know the meaning of cerebral palsy in our house.  Cerebral palsy affects everyone who has it differently.  It means different things to different people.

To me cerebral palsy means:

Lizzie uses a tube in her stomach to eat because she can not swallow properly though she loves to taste food.

Lizzie still uses diapers because she can not use the bathroom.

Lizzie is just learning how to walk with a gait trainer at seven.

Lizzie’s main mode of transportation is a wheelchair.

Lizzie can not speak words, though it’s clear she has a lot to say.

Cerebral palsy is something we deal with every day. My daughter has cerebral palsy, but it doesn’t have her.  She is progressing every day, constantly improving and growing.  She is learning to walk.  She has a couple words.  She is eating better.  With help and therapy she is getting there.  Cerebral palsy just means it will take her a little longer, she’ll need extra help and she’ll take a different path from other kids her age.  But she’ll get there someday.

The Bicycle

A while back some very nice friends of ours, Cub Scout Pack 69, did a fund-raiser for Lizzie.  Because of our friends, we were able to get something really cool for Lizzie.  We picked it up today.

This is Lizzie's new bike. We can steer or push, or she can.

Lizzie loved the ride.

Lizzie loves to ride. Look at the giggles.

Then she had to taste test her bike.  Or does she like it so much she’s kissing it?

Tasting or kissing? Tough call.

And finally, the best part.

It has a bell!

Lizzie has already managed to pedal some on her own power!  And has even rang the bell once!  I think this bike is going to really help her.  I look forward to her using it all summer long.  Thank you so much to everyone who made this possible: Pack 69, our friends and family, and Creative Mobility – who supplies these awesome bicycles to our area.

Warmer Weather Here I Come

I love the warmer weather.

I love my daughter.

Lizzie enjoyed chasing her dolly outside today.

But today I love my daughter enjoying the warmer weather.

Lots of giggles were had during the pursuit.

Dolly gets smooched when Lizzie catches her.

Awesome Communication Moment

Our Miss Lizzie is very vocal, but non-verbal.  Often times if something is bothering her, she will yell, cry, pinch, bite to get her point across, but she doesn’t always indicate what is bothering her.  This makes it a very difficult and often frustrating game called, “Guess What Lizzie Wants.”  And sometimes Lizzie’s yelling, pinching, etc will escalate as you guess wrong and irritate her more by fussing with her while not taking care of what she wants.  I have been bit in these situations.  It’s not fun, but it’s part of playing the game.  In Lizzie’s defense, when you have no words, you have to get your point across somehow.

Today we had a wonderful communication moment.  Lizzie was sitting watching her cartoons and having her lunch, when I started hearing cries of distress.  It was clear that something was bothering her.  I went to her expecting to play my normal guessing game, talking to her in a calm voice like I always do.  I asked her what was wrong.  Clear as day, she raised her foot which still had her AFO (ankle foot orthosis) on it, and then she reached for the straps.  I took off her AFO, and she gave me her other foot!  Then she tried to pull off her socks, which for some reason today were exceptionally sticky.  My daughter, who wanted her braces off, was able to tell me that was what she wanted.  There was no biting, no pinching, and no yelling (once I was within range to take care of her problem).  It was amazing!  I look forward to more of these moments in the future.  I was so proud of her, and praised her for doing a good job of telling me what she wanted.

What a day!

I’ve been hugged

In the history of Lizzie’s life, she’s never been one for physical interaction.  If it’s textural or gooey, she’s all over it, but if it involves being held, or touched for longer than 10 seconds, she wants no part of it.  I always attributed it to all the time in the hospital, and all the poking and prodding of tests.  I also attribute part of it to the nurse in the NICU who told me that holding my daughter was not something I should be doing, because her neck was not strong enough for her head.  And I shouldn’t touch her head.  I had been lightly stroking her forehead with one finger.  I realize now she was looking out for herself.  Hard to settle down an excitable baby when Mom leaves for the day.  UGH!  I never should have listened.  I remember being afraid to hold my own daughter.  I also remember that she liked being turned upside down as a toddler, but someone told me we shouldn’t do that either because it would hurt her.  If she liked it, how was it hurting her?  It wasn’t like we were hanging her upside down by her feet, we were just dipping her upside down and back.  She would giggle, she loved it.

Hugs for Lizzie are usually either given leaning over her crib rail while she is sitting, or hugging her in her wheelchair.  It’s always us hugging her. If you stay too long, she pushes you away.  If you hold her on your lap, she is constant movement, and the whole experience is maybe a half hour before she’s done with you.

Today, however, something amazing happened.  I was changing Lizzie’s diaper at bed time, and I had her bed railing half down.  I was standing leaning over the bed talking to her, when she got up on her knees, and scooted over to the railing.  Then she put her arms on mine, and started to pull herself up to stand.  I was shocked.  She’d never done this before while holding on to me.   When she got herself up, she leaned into me, and then just stood there.  After a few seconds, I realized what was happening.  Lizzie was giving me a hug!  I scooted closer to her, and hugged her back gently, and said, “Thank you for such a wonderful hug, Lizzie!”  And then she was done.  She lowered her butt back to the mattress, holding on to me the whole time.  I realized I had tears in my eyes.  What a beautiful gesture from my daughter.  I don’t need anything else for Valentine’s day this year, nothing could top that.

New Meds

We followed up with Lizzie’s neurologist yesterday.  It looks like we’re changing meds again.  The Trileptal has been causing her to have hyponatremia (low blood sodium) for a long time.  It’s never gotten seriously low, but has always been borderline low.  It is the only thing consistently coming up on her blood work when she has seizures, so our neuro has decided that it is time for the Trileptal to go.  We have begun weaning this morning.  As with all meds it’s going to be a slow process, hopefully not as slow as it is for phenobarbital, which we are still weaning years later.

In its place we are adding Topamax.  This is a medication Lizzie has not been on before.  As I understand, it comes in capsules that can be opened and sprinkled on food.  Since Lizzie has a g-tube, we will have to dissolve the sprinkles and put that through her tube.  Our other option is to find a pharmacist that will compound it for us (make it into a liquid) which I am working on, but we’ll see how that goes, and see if our insurance will cover it that way.

These times of changing meds always make me nervous.  We could experience breakthrough seizures in the process, or new side-effects (which could be worse than what we’re dealing with now).  The doctor told me the biggest side-effect with Topamax was lack of appetite.  I am not worried about that since Lizzie is fed by a g-tube on a schedule.  The other more worrisome side-effect is kidney stones, so we’ll be on the look out for that.

On another note, our neuro told me to make sure that Lizzie gets plenty of water with this medication.  I said that I would have to discuss the water issue with our pediatrician and nutritionist, because Lizzie’s water has been cut down to almost nothing to combat the low sodium of the Trileptal, so I will be making a phone call about that today.  First too much water, now not enough.  I wish she could just tell me what she needs sometimes.

Yesterday I looked up the Trileptal and low sodium.  Turns out that the reason it makes your sodium low is it causes you to retain water.  Low sodium can cause seizures (usually at levels below 120, but Lizzie’s have not gone below 123 on any test, but then she’s may just have a different threshold than typical).  Now I wonder, if we are able to increase Lizzie’s fluids again as we take away the Trileptal, will that help with her sleepiness in school and her tendency to overheat easy?  I guess we’ll find out.