Hannah loves, loves, loves the Wiggles.  I mean, Sam Wiggle comes on, and she giggles and smiles like a little schoolgirl!   There is one part on her Pop go the Wiggles DVD that she absolutely loves more than any!  She gets wildly excited when she sees it.  LOL

Yes, I know I was worried about Hannah getting her teeth in.

But you know what has now popped through her lower middle gum?  Yep!  We have the top ridge of a tooth!  OMG, I was jumping up and down with joy today when I saw that.  I know, it was silly. 

Even better, the other side of her front lower middle gum has the little white ridge trying to break through.

She is getting teeth!  Whoo hoo!  Another milestone she has hit!!!!   (I tried getting a picture, but it didn’t work…yet!)

Hannah is going to get her treatments!! 

I talked to my contact on Friday who told me that Hannah and the other GD23 children will not miss any treatments.  These children (and all children under 18 who have Gaucher’s disease) are their top priority in terms of receiving the rations of what is left during their Cerezyme shortage.  The official announcement was posted at the National Gaucher Foundation website, and it lists Hannah as Group 1A in terms of being one of the most vulnerable patients.

Group 1: Most vulnerable patients

a. Infants, children and adolescents (less than or equal to 18 years old) and patients with type 3 Gaucher disease should continue receiving Cerezyme according to their current dose and frequency, without any interruptions.

I just had a feeling, deep in my heart, that Genzyme would take care of Hannah and the other type 2 and type 3 kids.  That’s why when a different Boston Globe reporter called me a few days after the original article appeared with Hannah and wanted my new reaction to the extended delay that was just announced, I just told the reporter “Let’s see what they do before we start to freak out.”   

Thankfully, this is one less worry that we have to deal with.  Hannah will continue to get her treatment without missing anything.

These past few days in Austin have been really eye opening with Hannah and her “issues.” 

On the drive over here, Hannah started crying and starting to hyperventilate again.  It was only about 30 minutes into our 4-hour drive.  I started getting nervous, but I was able to calm her down once Daddy put the inside car lights on (while we were driving) so I could find her pacifier. 

Then, I noticed something.  Hannah, who was exhausted and needing to sleep, did not like being in the dark at all.  Once the car dome light on her side went on, she calmed down.  So, we left it on as we continued to drive.  No more crying and no more hyperventilating.   She fell asleep, and we turned the light off.  Something would wake her up, and she’d start that crying again.  Turn the light on, and she would calm down.

We realized something after this.  Hannah has NEVER gone to sleep with the lights off before.  She has always fallen asleep in our bed and had been transferred to her crib.  Even in her room, she has night lights on in there. 

It seems that Hannah is scared of the dark perhaps.  It makes sense since it is when it is dark that she really starts that gasping crying.  Both times it happened in the car, it was dark outside.  It didn’t happen last weekend when we made the long drive over to celebrate Greyson’s law, possibly because it was daylight. 

The big test will be on the way home tomorrow.  We will be going home, a 4-hour drive, during the day.

I hope that this is the case ONLY from the standpoint that we can control how much time she is in the dark by always having a little light with us or use the car dome light on her side.  We may also get a low-voltage bulb for her lamp in her room, as this may help us during the night too when she gets restless and can’t fall back to sleep (so we have to get up to get her the paci because she doesn’t see it and won’t try to find it).

I’m sitting here in our hotel room in Austin.  Tomorrow morning is the beginning of the Texas Parent 2 Parent conference that I mentioned last week.  I’m really glad to be here, because I am hoping to learn more useful tools to help us learn to navigate the “system” as well as learn to be more proactive parents to our “special needs” child. 

Funny thing, I still don’t see her as “special needs.”  Yes, I know she is.  My head knows that.  My heart still has a hard time wrapping itself around that concept. 

Even after a horrible occupational therapy today that left me walking out of there somewhat defeated, I still just don’t see her as “special needs” in the classical sense.

Ms. Pat, Hannah’s OT, finally got to see how Hannah eats from a spoon and eats from a bottle.  We tried to do it last week, but Hannah was just starving while we were in the waiting room, so I had to feed her then.

Hannah started getting upset, immediately as soon as I brought out the baby food container.  So much so, that she started having difficulty breathing.   I finally got her calmed down, and I was able to give her about 5 spoonfuls.  Pat was able to notice that Hannah still tongue thrusts, and she doesn’t have the bite, swallow, and breathe reflex that she should have at this age.  So basically, she is choking when she gets spoonfed.  She then said “I didn’t realize it was like this.  This is definitely dangerous for her.”

She wants us to stop spoon feeding for at least another month and just stick to bottles like we are doing.  We can continue “oral play” with the hard licorice and hard pretzles, things that can’t be broken in her mouth.  She then made the comment that “This doesn’t mean she will never learn how to do this the right way,” but my heart just sank. 

I know how this crappy disease works.  It was all I could do to keep my composure together as we left the office.

But for now, we are thankful we can still feed her by bottle.  I pray that she is right, and this is something she will learn.  But honestly, she has been trying to learn this for 7 months now, and we just don’t seem to be any closer. 

But I still don’t see her as “special needs,” I just see Hannah.

Hannah had a great, great PT day again today!  I tell ya, Ms. Pam, the therapist, definitely knows how to work with Hannah.  Hannah has been using her Surestep orthotics for about a week now, and today was her first day using them in PT. 

We worked on getting on to her knees and balancing and rocking, and you can see Hannah’s is definitely getting stronger in her quads.   We also worked on her getting from a sitting to crawling position and a crawling to sitting position.  She is not there yet, but she is definitely in more control of her movements.

Hannah’s ABSOLUTE favorite thing is the yellow peanut therapy ball.  Ms. Pam sits behind her, and Hannah focuses on standing up with just using her hands to hold herself in a standing position.  We would put a toy on top of the ball, and she would actually start being able to balance with just one hand while grabbing the toy!   She would also work on walking with her hands on the therapy ball while Ms. Pam and I would continue to move it forward.

But the thing that made the entire therapy room laugh was Hannah’s pure joy on being rolled on this ball.  Ms. Pam would roll her up so she would be balancing on her stomach with her feet in the air, and then Hannah would work on putting her feet in the right position each time she would land back on the ground.  She was just hysterical doing this and had such a blast!

Actually, my goal now is to see if I can find one of these peanut therapy balls for the house.