Archives for July 2011

After many months of waiting, Hannah’s stroller-wheelchair is finally here!

It is the Otto Bock Kimba Spring, and it is a work horse!   It offers her so much support and comfort that she was able to sit in it and play for two hours collectively on the second day we had it!   Definitely custom made for her dimensions because everything fits her perfectly (so far!).

Also, Hannah has the distinction of being the first child in Las Vegas to own the pink model.   Yep, they just brought out the pink in the last few months as an option.   When we ordered this back in March or April, we only had the choice of green or orange with the grey.   Then we got the call about a month later asking if we wanted to change to pink since it had just come available, and I was like, “Hell ya!”

Hannah looks so tiny in it.   I didn’t realize how wide this was going to be!   I’m so glad that we got the house with the really open floor plan because we would have had a lot of trouble maneuvering her in our old house with this.

This stroller-wheelchair, now lovingly dubbed “The Pink Rider”, is going to become a heavily used piece of equipment in our house.   The days of always having to hold Hannah and carrying her everywhere are over.  The days of spending all day on the floor or on a lap are over.   She is just too heavy to keep doing this, and besides, it isn’t good for her either.    Now, she will be able to sit independently (without being held), play with her toys on her tray, and spend most of her time off the floor and in the chair.

We knew the day would come where Hannah would need a wheelchair.  That day is here.

Huge, huge milestone birthday today.  Number three!!!!

Hannah had a really rough night of sleep (or lack there of, I should say), so I was able to be the first person to sing her Happy Birthday…about 40 times!

Hannah, my beautiful little girl, you are my heart, my soul, and have given me more gifts than anyone else I know.    Your smile is intoxicating, your expressions say more than a million words, and your touch is magical.

I am so thankful that you are mine, my little girl.  I am so blessed to have you come into my life.

I love you, I love you, I love you.

Happy birthday, baby!!

We have been slowly decreasing Hannah’s Klonopin for the past few months, since the beginning of May I think it was.

We dropped down to 1.5 mL three times a day earlier this week which was about a .5 mL per day drop.

Coincidence or direct result, we don’t know, but we have seen some “not good” changes in Hannah.   She has started having what I think are laryngospasms in her throat.   It is like she gets choked up (even with her trach), she gets horribly uncomfortable with tears, and extra saliva comes out of her mouth.   These have lasted anywhere from 10 seconds to about a minute or so.   And they seem to come in spurts as well — 2 or 3 within a 30-minute period and then we could go a half day without another one.

Truth is, I don’t really know if they ARE laryngospasms or some kind of problem with reflux (even though she is already on 15 mg twice a day of prevacid).

They are really hard to watch.  She is so miserable and affected physically by these spells.   We have never had to watch Hannah suffer through something like this before (outside of her hospitalization).

We are thinking that maybe because the Klonopin is a muscle relaxer that she was able to avoid these spasms (if that is what they are) because it controlled that?

We decided to bring her back up to 2.0 mL three times a day, which was the last dose she was stable at.   When we see Dr. Sanger at Children’s Hospital L.A. in a couple of weeks, hopefully he can give us some insight into the use of Klonopin, her movement disorder, and help us determine what type of event (spasm, cramp, pain, etc.) she is having.

As I am watching Hannah sleep in her bed next to mine, with her humidified trach collar going full force, I am in love with my little amazing fighter.

It was last July 18th, 2010, that Hannah was released from the hospital for the last time.   With the exception of ER visits for multiple bouts of trachiitis for which she was never admitted, she has not had a hospital admission in 365 days.  One year!

Do you have any clue how absolutely amazing it is that a child like Hannah, with all her medical complications, has been able to stay out of the hospital for an entire year?

She truly blows me away.  Her fight, her drive, her smile.  She is so extraordinary.

There is a part of me that fears talking about this because I might jinx it.

But you know what, no matter what happens from here on out, nothing can take away the fact that Hannah has fought to keep herself out of the hospital for an entire year.   Nothing.  It is hers.   She owns that amazing feat!

We just got back from Hannah’s neurologist follow up appointment.   It was our first appointment with him since we started decreasing the Klonopin in May.

He was very happy with seeing the change in Hannah’s attitude, balance, and her regaining of some of the skills she has lost (such as rolling over, trying to reach out, etc.).   She was sitting on my lap balancing while smiling, laughing, and just in a good mood, which is a huge difference from last time when she was “lethargic” and just laid in my arms.

What is even more unusual but exciting is that Hannah’s nystagmus (eye shaking) has significantly decreased!   The irony of this is that Klonopin is actually used to help treat nystagmus.

He commented how he was worried at the last visit that what we were seeing was progression of the Gaucher’s disease.  He even talked to Dr. Goker-Alpan at the NIH about her.

But the decrease from 3.0 mL three times a day to 2.0 mL three times a day has made a huge difference.

So we were both wondering… she has been on Klonopin since she started with the movement disorder back at Texas Children’s Hospital last June.  What if she doesn’t really need the Klonopin anymore, and she is having a “paradoxical” reaction to the medication since she seems to be doing better with the decrease on things that Klonopin is actually supposed to treat.

The plan is to wean Hannah off the Klonopin very slowly.   So we are going to go down 1 mL per day this month (down from 6 mL a day to 5 mL a day).

He is also going to work with Dr. Sanger at Children’s Hospital Los Angeles and implement whatever recommendations he may have (which may be a different wean schedule or even something else).   He knows Dr. Sanger very well, so it is great that they already have a working relationship established.

I walked away incredibly happy with this visit.   Hannah actually improved quite a bit over the past two months with this decrease in Klonopin.  It wasn’t her Gaucher’s disease, at least not this time.  It is so rare for us to have such an appointment where we actual get an improvement in something, and this being so important, it was just a wonderful, wonderful feeling!