Archives for February 2011

Hannah had physical therapy today.  It was another day to work with the stander that we were thinking of getting for Hannah.  Something to build up her muscles in her legs, knees, feet, etc.

This was our third week with the yellow trial machine, and Hannah lasted about 3 or 4 minutes this time.  She really wasn’t fighting it at all (it helped we put her iPad on the tray).  She just had a hard time keep herself up even with the restraints.

So her PT grabbed a different trial stander from the back.  It was being trialed by another client of theirs, a little boy who happened to be there at the same time.

It is called the “superstand” pediatric stander, and it can go from a reclining type position to a straight upright position.  It also secured Hannah in much better.

She loved it!   It could possibly be because the way the straps were on her body that they helped keep her movement disorder minimized.  It could also be that working out in a reclined position and slowly working up into a stand is a lot easier on her body.   Maybe she liked the color better.   For whatever reason, it seemed like a much better idea for Hannah.

We don’t think she is ready for a straight upright stander yet, and this new type gives us the flexibility of working up to a straight upright, as it can go into that position as well as dozens of reclining types of positions.   Baby steps.  But as you can see, she was a happy camper on it for about 10 minutes and still got a workout using her legs!

With having to deal with the insurance company and/or Medicaid, it will still likely be a couple of months before we get it.  But I think this will be much better for her.

Today was not a good day for Hannah.

It started last night.  She woke up around 2:30 am, and even though she was exhausted, she stayed awake until 5 am until Daddy and I switched swifts.  The difference this time was that Hannah’s movement disorder was really significant.  It almost seemed like her seizures were more significant as well.

She spent the day sleeping and cuddling with her nurse.   Very little play time today.   Her nurse also noticed the increased movements and possible seizure activity when she was sleeping.

Hannah wanted to sleep, but her body would not let her.

Then this evening, she started to perk up a bit.  Played with Daddy a little bit too.

Right now, she is asleep in bed with me.  Her body is still, and her twitching (possible seizures) are nonexistent.  I hope it lasts all night long because that would be significant.

I got a call from her specialist’s nurse.  Hannah’s clonazepam level came back at 11.   Low end of normal is 30, so her clonazepam is definitely not therapeutic.  This is her main med for her movement disorder.   We should get her Keppra level in a couple of days.  Last month it was low, so her neuro bumped up her Keppra.

Obviously, we need to bump up Hannah’s clonazepam.  The negative is that clonazepam is definitely a drowsy drug.  We also know that Hannah is on a “baby dose,” and she is at the same dose she started on back in the PICU last May.   It has never been changed from back in Texas.

I hope tonight goes better.  She needs a GOOD rest.  Not a restless one.

You know, it could be because she is starting to feel better now that she gotten over the trachiitis and strep and got the antibiotics out of her system.   Or maybe not.

Whatever the case, Hannah’s sleep habits over the past week have become quite crazy.   If she takes just one nap during the day (about 2 hours), she falls asleep somewhere between 11 pm and midnight, and then she will probably sleep until 6 am or 7 am.   If she takes two naps during the day, then she will fall asleep even later — last night she went to sleep at 2:15 am!  Yet she still woke up at 7 am.

What makes things worse is that if we put her in her crib once she is asleep, she wakes up a few hours later and is just awake.   If I let her lie in bed with us, she sleeps for 7 to 8 hours straight!   Maybe her crib is just too uncomfortable for her now (too small) or she feels more comfortable in our bed or feeling us next to her.  It could also help that when she is lying in bed next to me, I can immediately suction her when I hear the junkiness start (instead of it getting bad enough to wake her up).

Regardless, the problem is that my head is telling me it is so not a good idea that Hannah get into the habit of sleeping in our bed every night.   So many reasons that it is not a good situation to get into.   First of all, even though it is a king bed, there is just not enough room for all three of us, especially if she sleeps sideways like she likes.   Right now, Daddy is sleeping with his head at the other end of the bed so that Hannah has enough room.  Second of all, Daddy/Mommy time is scarce as it is.   Also, the sounds of suctioning and having the lights on makes it harder for Daddy to get a good night sleep.  Lastly, I just know it is not a good thing for her to get used to and expect.

But my heart says, “Who cares.  She likes it.  You like having her there.  Just do it.”   I also feel safer with her right next to me because if I fall asleep, and I am holding her hand or her arm (like I have been doing), I will wake up a lot easier if she moves around, coughs, or needs suctioning.  I am always afraid that if I fall asleep while she is in her crib, I won’t hear if she is in distress.

But if we decide to let her sleep in our bed, Daddy is likely going to start sleeping in the other room where we have a single bed.   Just so we have room and he can get some sleep.

I try to justify it that we will be hopefully moving in the next 6 months or so, and she will have her own room and her own bed.  This way I can do my night nursing with her, and she can fall asleep in her own bed with me lying with her.   Daddy will have peace and quiet so he can get a better night sleep.

I’m glad that my relationship with Daddy is secure enough to deal with something like this, but I still don’t know if it is such a smart idea.

I also wish I could get a better grasp on why she rarely gets a full night’s sleep anymore (it has been weeks).  We have even tried melatonin without success.   She also seems very tired most of the day but she fights nap and sleep more than any child I have ever seen.

Daddy had to go out of town for work for three days.   It was the longest three days of my life, it felt like!   It had its horribly crappy moments, which I don’t feel like rehashing here, but needless to say they will never be forgotten.   I realized some things while he was gone and some changes we need to make next time he has to go out of town (which will happen more often since he is getting a multi-state territory now).

Reality is that I’m not that young anymore, and I can really only handle so much.  I hit my breaking point while he was gone.  I didn’t realize that it was going to happen, but a series of events happened that made me realize I was there.

Most important: No more morning appointments for Hannah on days he is out of town.   Just can’t do it.   Doing night shift with Hannah and then morning appointments…just too much for me.

Also, when he has to go out of town for an extended trip (more than a couple of days), I need to *attempt* to rearrange our nursing schedule so we can use more hours when he is gone and use less those days he is there that week.  We have 56 hours a week to use as we see fit.    I say “attempt” because we only have so much control over that one is we want our regular nurses to take those hours.

Daddy is home now.  Thank goodness.  I was so happy to see him when he walked in the door tonight, I felt like I was a little kid.