Archives for November 2010

I’ve decided to make some changes to Hannah’s therapy routine.  Before this week, she was having PT and OT across town weekly (Mon & Wed) and developmental therapy here at home.   The drive was really to and from the therapy clinic (30 minutes each way) was really getting to be too much for Hannah, especially since she has been so tired lately.  It is almost like by the time we get there, she is so tired and does not want to participate.

We found a therapy clinic that is just 5 minutes from our house.    We had our initial OT consultation today.  It is a smaller office than the one we went to before.  Even though Hannah was completely exhausted (for whatever reason she did not take a morning nap), she still was able to work with the new OT for about 20 minutes before falling asleep.  She did not even complain!

It was a good consultation, and this new OT got Hannah to do something I have never been able to do.  Get her to stack a block on top of another one (with some assistance)!   Hannah stacked two blocks!  The OT helped guide her hand, but it was just beautiful.  Her nurse and I were so excited to see that.

The OT asked me the standard question “What do you hope to get out of occupational therapy?  What are your goals for Hannah?”   My answer sort of surprised her.  I explained that I am very realistic as to the fact that Hannah has a very difficult time learning new things.  Her skills are very scattered — most are at a 12-month level, but there are a very few that sneak in that are more age appropriate!   I told her my goal is to keep trying to teach Hannah new things because the more neurons we create in her brain, the longer it will take for the disease to progress.  The regular “goals” for occupational and physical therapy don’t apply to Hannah, at least as far as I am concerned.

Reality is:  Her disease is killing the neurons in her brain for the most part.  So whether or not it is true, logic tells me the more neurons she can make in the brain, the longer we have with her, which in turn, gives us more time for whatever may be on the horizon to help Hannah.

Next Tuesday we have our PT consultation at the same place.  A 5-minute drive each way is so much better than a 30-minute drive each way!

This movement disorder she acquired when she was hospitalized this summer is really doing a number on her.  I don’t know if it is her actual choreathetoid movements getting worse or if she is just growing a tolerance to her medications (Keppra, Klonopin, and Haldol).

Her balance is getting worse.   So I ask myself — is it the movement disorder because she is just constantly moving now or is the “ataxia” symptom of Gaucher’s?   She faceplants because of her weakness in her left hand (from using it wrong), and she falls straight backwards at times because of lack of balance.

You can mostly see the movements in her hands and face, which is where it has always predominantly been.  She clasps her hands much of the time now, which we think may be her way of stopping her hands from constantly moving.

Because her body is constantly moving, she is always exhausted.  Moreso than usual these days.  She took 3 naps today!  The first one was 90 minutes in the morning, then she took about a 2-hour nap a few hours after she woke up from the previous nap.  Then, she crashed again just a few hours after waking up from the second nap — right in the middle of Halloween festivities!

You would think with all this exhaustion that she would sleep through the night.  But no.  Around 3 am or 4 am every morning, I start noticing her movements start while she is sleeping.  They eventually wake her up.   Sometimes cranky and still exhausted.  Sometimes “Okay, I’m up, let us play!”

Despite what is listed on the wemove.org website, there are no pediatric movement disorder specialists in Nevada.  I’m trying to reach out to Dr. Sanger over at Childrens Hospital Los Angeles because he has a good reputation when it comes to movement disorders in children.  Unfortunately, he is not accessible by email, so I have been trying to reach him through his office… ugh!

Between her movement disorder and her newly-acquired seasonal allergies (and the throwing up of mucous), she is just getting thrown through the ringer these days!  We are lucky if we get a good hour or so out of her before she just starts getting exhausted again.

We also can’t seem to get her enough calories these days (barely making 1000 a day now) because of the throwing up.  Also, with these increased movements, she needs more calories.  She is starting to lose weight again (about a pound in the past month).  Yet we can’t feed her as much as we would like because her stomach gets full of the mucous she is swallowing from her allergies (we can’t even suction it out because she swallows is before we can — just more proof we don’t need the dang trach right now!).

We have a busy two weeks coming up for her — her flu shots, new PT and OT consultations (closer to home), follow up with her pulmonologist, neurologist, gastro doc, and consultation with her new pediatric orthopedist.  I’m exhausted for her!