Archives for December 2010

Dear Santa,

All I want for Christmas this year is a cure for Neuronopathic Gaucher’s Disease.

Love,

Ethan, Abigail, and Hannah’s Mommy

I was watching Ethan start playing with the iPad.  Hannah heard it turn on, and she crawled over as quick as she could to see what Ethan was doing with it.   It was really funny because she basically threw herself over his legs to see what was on the screen.   Then, she proceeded to “turn the page” of the iPad so that Ethan could not play anymore.    (“Turn the page” is what Hannah does when she is done with something — when she is done with the iPad, she will turn it over as if it was a page in a book.)

She didn’t want her brother playing with the iPad anymore because SHE wanted to play with it!  I WISH I had my camera with me for that one, it was so cute!

The iPad has been a godsend of a tool for her.   We have about 5 or 6 apps that we have found that really have made Hannah focus on her cause/effect and especially her fine motor control.

We have Talking Tom Cat to thank for really getting Hannah excited about interacting.  This one took awhile for her to get and understand, but now it is by far her favorite.  I have to admit that her nurses and our family all like it too because we get to say things, and Talking Tom repeats them in his higher cat voice.  Hannah does not seem to put two-and-two together and realize it is us saying these things.  She just loves it when Talking Tom says her name and talks to her!

She has finally learned how to ‘pet’ him and tries to get him to fall down.   There are white buttons on the sides that you can press to have him do certain things (play cymbals, drink milk, catch a bird, etc.).  Hannah has not quite figured out which one to press to get him to do certain things, but she definitely loves when she does get him to do it.  She thinks it is hysterical when Talking Tom toots!

I can now see why so many people recommend this app for kids like Hannah.  It is fantastic!

It is really awesome to see Hannah WANTING to be interactive with her iPad.   We probably let her play with it about an hour during the day (broken down into anywhere from 10 minute to 15 minute sessions).   It also has been a godsend when having to deal with doctor appointments because we have her Wiggles and Mickey Mouse movies on there.

And the real reason Hannah loves her iPad?  Ice, Ice, Baby!

The clock just changed to midnight.  It is now Christmas Eve.

We spent the day today (day before Christmas Eve) doing a major winter-cleaning of Ethan and Abigail’s rooms.  We have this “tradition” that the kids rooms have to all be cleaned and really organized or Santa won’t bring them any new presents.   You know, throw out the old, broken, and no longer played with (those get donated).

This year, the rooms were disaster areas, moreso Abby than Ethan.   In all honesty, we had not spent any time really organizing it properly since we moved here this summer.  Abby’s room alone ~ 2 black trash bags full of junk!    Ethan was very proud and did most of his room himself, but he did let Daddy help after a couple of hours.

It was a great feeling getting that accomplished!

We have two more rooms to tackle before “Santa will come” later on today, which include Hannah’s area downstairs.  Ethan and I started going through Hannah’s toy area this evening.

Hannah has had many of the same toys she has had for the past 2 years.   Since her development has not changed much in the past 18 months, many of the toys she has area still at her level.  Those toys that we were being ambitious with many months ago in hopes she would gain certain skills were put in the ‘garage sale’ box.  Daddy and I both came to the realization that there is just no reason keeping around certain toys for many, many months at a time in hopes that she will get the hang of it.

It is just not in the cards for her right now, and if in the future she does gain those certain skills, then we will rush out to the store and buy them again.   I’d like to say I’m okay with this, but truth is, it is not like I have any choice other than to accept it.   As I keep saying with regards to this disease, “it is what it is.”

Santa has more presents for Hannah on Christmas, as well as gifts from friends and family.  Some her age level, some being ambitious again.   We have to keep trying to be ambitious because we never know what may click with her.   I guess that will never change with us.  We will never give up on her.  And if she doesn’t play with them for the next 12 months, there will always be next year’s winter cleaning.

Hannah had her Keppra level drawn at her Cerezyme treatment on Monday.  It was at 9.0.   Dr. Brown, Hannah’s neuro, wants it to be therapeutic at 15.0, so she is raising her Keppra dosing to 2.0 mL 3 times a day from 1.5 mL three times a day.  The Klonopin will stay the same for now.

I will have to admit that Hannah is sleeping more soundly now that she is off the Haldol (completely as of Friday).  Even though she is still tired almost all the time, it is not as bad as it used to be.  She still fights sleep INCREDIBLY, but for the past few nights, she has not gone to bed until 11 pm instead of 8 pm!  She still is taking her two naps a day, but instead of her second nap being at 3 pm, it is more like 5 or 6 pm now.

We don’t get another EEG for a few months, but I keep hoping that with the removal of the Haldol and the increased Keppra that her seizures are under better control.

On a separate note, we finally received Hannah’s “smart vest.”  It is a vest that she wears that pounds her chest for a period of time to loosen the junk in her lungs.  It is used a lot for cystic fibrosis patients.  Her vest is “yellow.”  Initially, I thought she would hate it because she does not like being restrained at all, but the three treatments we have done with it so far she has actually liked it!  Weird, huh?    I’ll take a video of Hannah with it, but to get an idea of how it works on another baby, click here.

Because the kids are home from school for the next two weeks, we have cancelled most of Hannah’s therapies and appointments with the exception of her Early Intervention service coordinator visits, her cardiology followup for her enlarged aorta, and her upcoming Cerezyme treatment.

Our 12-1/2-year old beagle’s body is failing her.   Molly lies on her dog bed all day long, and when she does get up to walk to the food or water, it is a very slow, uneven, and limpy type of walk.  Going through the doggie door takes her quite a bit of time, as she is slowgoing.  Also, Daddy had to make a path around the deck because she can no longer go up the stairs.

Instead of getting up to bark, she lies there on her bed yelping when someone comes in the door these days.

But she does not seem like she is in pain.

Daddy and I are faced with the decision now as to “when” it is okay to let her go.  This decision seems so much harder these days, especially in light of all of those children that are fighting so desperately for life right now.   I feel like this decision is now so much bigger than just one dog, you know?  It is almost like this decision of “when or wait” is going to dictate so much more of our life than we expected.   Quality of life versus quantity?

My dilemma stems from having Ethan and Abby find her either not breathing or suffering if we don’t do something.  I feel it would be more devastating for them seeing Molly no longer alive than if it happens when they are away at school or something.

For me, I think it is almost time.  Daddy is not so sure.  Neither of us know when the right time is.  We are both afraid to make that determination.  Shouldn’t it be an easier decision?

Obviously, I know there is a bigger picture here with this decision that is making it so much more difficult than it should be.  I can’t even put it into words, but I really don’t need to.  I know there is only so much protecting of Ethan and Abigail I can do…I just don’t know what to do.

We finally got Hannah’s nursing figured out with our new insurance company.  We get 56 hours a week, broken down however we want to use them.   Previously, we had 48 hours a week, no more than 8 hours a day (currently M – Sa, 9 am to 5 pm).  So this is a pleasant change.

I just don’t know what to do with them.  I have asked Daddy for advice, and he keeps saying “whatever YOU want, as this helps you more than anyone.”

My dilemma….as you know, I do the “night shift” every night with Hannah until about 4 am or 5 am.  I get about 4 to 6 hours of sleep at that point (usually broken down into two “naps”), depending on if Daddy has an appointment in the morning or if Hannah has an appointment (though I have been making a point not to schedule anything before 11 am these days).   The days Daddy is out of town or can’t do the mornings with all three kids are a nightmare for me (like this morning).

I decided to take on this night shift in order to take advantage of having a nurse here for Hannah when the kids get home from school.  They get home around 3 pm and the nurse leaves at 5 pm.  This is my one-on-one time with Abby to get her homework done and whatever time is left over for Ethan and Abby.  Also, it helps tremendously having a nurse along Hannah’s appointments with me, especially in the car because I don’t have to stop everytime she has a tantrum or needs suctioning.  But it also gives me free time during the day to make phone calls, etc., but really not enough time.

We still want our Sundays nurse-free.  That is a given.  It is a nice break to just “be a family,” and we have settled into a good routine with that.

So, do I give up a couple of nights and get night-nursing?   That is a possibility.  But then I wonder if how my body would deal with that?  I mean, I am so used to be up until 4 am or 5 am now.  Would I even be able to sleep drug-free if we had night nursing?  I wouldn’t take any type of sleep aide because I want to be able to wake up in case of an emergency.

Or do I just accept the fact that I am the night-nurse and that is the way it is.  I get caught up on my email communications plus the business I have created (to go live on 1/1/11) was created with that kind of flexibility.   The ones who suffer, besides me, are the kids on the weekends because I usually sleep until noon or take a 2-hour nap during the day.  But again, they are used to that and accept that.

I don’t know what to do… give up some nights or not…  I really just don’t know what would be best.   I have 56 hours to divvy up.  How best to use them?