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.

Even though we have only known each other about 6 months or so, I really feel like I have connected with Nicole, Grey’s mom.  We met via blogs back then, and then we met in person last month.  She is more awesome in person than she is online!  

It was also a celebration of her a-bit-younger-than-I-am birthday.  When she was able to do a backflip on the trampoline — TWICE — I was just in awe!  I sure as heck can’t do that!

So when she invited us to celebrate the signing of Greyson’s Law (Texas Newborn Screening Law), we didn’t hesitate, even though it was a 3-1/2 hour drive!  It was great to see her again, and I got a chance to meet her husband and good friend, Misti (who “introduced us” online), who is just fantastic!   It was an honor to be there to celebrate this great occasion with their family and friends – such an important law for Texas children!

Hannah

Hannah was just not herself completely yesterday, though.   Usually she loves meeting new people and “hanging out,” but she just wasn’t in the mood this time.  I think it was a combination of the heat (it was over 100 degrees) plus the lack of afternoon nap (only 15 minutes) and being cooped up in a car for the long drive there.  Daddy kept bringing her inside the house in order to keep her cooled off.

However, on the way home last night, she just started getting really upset on the ride home, about 90 minutes in.  We aren’t sure what started it. Because she has dimished lung power when she gets excited, she started hyperventilating.  This was the first time this had ever happened with her.   Because we were on the freeway in the middle of nowhere, and it was dark, it took about 5 minutes before we found an exit with a lighted gas station.  Until we got there, I just reached over the chair and kept trying to keep her paci in her mouth, hold her hand, and stroke her face (though she couldn’t see mine).  It seemed to help only a little bit, but it did help some at least.

Once at the gas station, I pulled her out of the carseat and just cradled her, trying to calm her down.  She started bubbling a little bit from her mouth, and that freaked me out a bit.  Daddy and I handled all of this really calmly because we didn’t want Abigail and Ethan to freak out, but I was truly scared.  Yet, we knew we weren’t anywhere near any medical facility, so I just did my best to calm her down by holding her and stroking her face.  Finally, about 10 minutes later, she was calm enough that I could put her back in her carseat.  I ended up sitting next to her in the middle row (we have a minivan) and holding her hand the entire ride home.   She didn’t take her eyes off me nor did she take her hands off my hand or arm. 

Even though she was a bit calmer, she was taking quite a few shallow breaths, as if she still hadn’t completely been able to catch her breath yet.  This lasted about 30 minutes.  By the time we got into a major city, she was pretty much back to normal, thank goodness!!!  She finally fell asleep about 10 minutes after that.

So now we know… we have to make sure she takes her afternoon naps when we go out, keep her out of the heat more often than not, and take more breaks on long car rides.  The combination of the three is pretty dangerous for her, it seems.

This morning?  She is just fine and completely back to her normal self.

We met with Dr. B., Hannah’s pediatrician, on Friday for her monthly check-up.

Her head circumference growth seems to have leveled off and actually didn’t change in the past 3 weeks.  This is good news in hopes that she does not have hydrocephalus!  We will still probably be doing an MRI of the brain at the National Institute of Health in July, however.

Hannah’s spleen really is starting to shrink now.  Before it went 5 cm below her costal bone (rib), and Friday, it is almost at the 3+ cm mark!  What a big difference!  Her liver is also starting to shrink a bit now.  Her platelets, however, went down just a bit to 147,000 (we were hoping for a raise since the spleen is shrinking).

Everything else was what we already knew except her worsening eye movements.   Daddy and I have been noticing it for the past few weeks, but Dr. B. saw it and mentioned it, so I knew it was true. 

I don’t know what the medical term is for it, but she seems to have trouble moving her eyes to where she wants them to go.   For example, she was in her exersaucer today, facing away from me.  I called her name, and you can see she got really excited, jumping up and down, and with a huge grin.  However, even though she started moving her body towards me, she couldn’t seem to get her eyes to unlock from straight ahead where she was. 

It is like we go through days where everything seems great, but then we get hit with these reminders that she really does have this progressive nasty disease, and it breaks my heart.  Now that it is more often and more noticeable, these reminders happen more often now.

Hannah is definitely becoming her mother’s daughter.  She is becoming fiercely independent, stubborn, and wants to be in control of what she does.  Don’t know who that would sound like in our family!  LOL

Physical therapy (Wednesday):  She had a great PT day with Ms. Pam.  Even though she was visibly tired from the lack of a morning nap, she was a champ and had a great time.  We worked on balancing while sitting, balancing against the big peanut ball, getting our knees up into the crawling position, and quite a few other things.  By the time the session was over, Hannah was exhausted, but she was smiling.  The best news was that Pam did her one-month reevaluation of Hannah’s progress, and Hannah has hit 4 out of 9 long-term goals already!!!!  THAT is my girl 🙂

Occupational therapy (Thursday):  We talked about her absolute refusal to let us put our fingers into her mouth, let us feed her with a spoon, etc.  This is where the words “stubborn” and “control” were first thrown around.  Pat, her OT, thinks that this is a protective measure because she is scared to get stuff in her mouth that is not on her own terms.  She has no problem putting anything and everything in her mouth as long as SHE does it. 

Pat gave her a long gummy worm to hold and eat, and she was very curious at first, but then she was in heaven.  Since she has no teeth yet, she was unable to puncture the worm.  We also tried a lollipop, and she LOVED that UNTIL one of us tried holding it and letting us put it in her mouth.  She would keep trying to grab it out of our hands!  So Pat suggested why try opening her up to tastes in her mouth with solid foods that she can’t break off like gummi worms, lollipops, cold zucchini, cold carrots with ranch, thick pretzel rods with salt, etc. 

We are also to take a week off from trying to spoon feed her anything.  We are still going to feed her the baby food in each of her bottles with formula, but we will let her experiment and try putting the food into her mouth.

Developmental Therapy (Friday):  Hannah was just not in the mood.  Even though Hannah loves Jenny, her therapist, she just wasn’t having any more manipulation and work.  It could be that she was getting used to her orthotics and her feet were feeling weird or that she just wasn’t feeling like herself.  But, Jenny is scheduled to come back this Monday, so we will try again!