Move over Ice, Ice, Baby… Hannah now has a new favorite song.  This one gets her even more excited when it comes on than anything we have ever shown her!  

You can see in this video as soon as she sees the still before Daddy presses play that she knows it is coming on. As soon as those curtains open and the music starts, she just can’t control herself!

Tonight we took Hannah and the kids to our local Easter Seals Halloween Festival.

We had been tentatively planning it for the past couple of weeks, and it was all contingent on whether or not Hannah would take her second nap in the afternoon.  The plan was to leave around 5 pm-ish, and Hannah crashed at 4 pm.   We thought we were going to have a great success, and hopefully she would nap for at least an hour or so.

15 minutes after she fell asleep, she was up and raring to play.   So the question was… “Do we go to the festival and risk Hannah having a meltdown when she gets too tired?”   We decided to risk it.

We ended up staying at the festival for a couple of hours, and Ethan and Abigail had a great time!  They did the festival games.  They did the trunk-to-trunk trick or treating (and came home with a stash of candy), and they even did the haunted house.  Hannah took in the sights, as there was nothing really for her age level, but it was so good to get her out and about.  I’m really glad we did it.

Towards the 2-hour mark, Hannah was really showing signs of being tired.  It was also getting cold out.  Once we got her settled into the car, she started having her tantrum meltdowns.  It always sucks when she does it in the car because she seems to hate being in the car these days, even with her Mickey Mouse DVDs.   We stopped once to grab fast food, and I was able to take her up to the front seat and cuddle her.  She was so tired, she was rolling her eyes and snuggling into me.  Of course, she never fell asleep.  The entire 15-minute ride home from there was rough, as there were quite a few times that she started with her breath-holding spells.  I held her hand most of the time, and I tried to sing and calm her down.

When we finally got home, and I put her on the floor in the family room, she was just a happy camper!

The kids spilled out their entire stash of candy and dug into it.  Hannah dug into it too!  Even though she can’t eat the candy itself, it did not stop her from chewing on all the wrappers.  She was so cute pulling out candy and munching on the wrapper.

Except for the car ride home, which we sort of had a feeling would happen (as she does not do well on car rides when she is tired), we had a fantastic family time tonight.  Just the five of us!  It also reminded me that I really should get involved with Easter Seals and see what they have available which may be of help to Hannah.

The Halloween festivities are not over by any means!   More halloween parties and events to come 🙂

Hannah and Minnie Mouse have a special love affair at bedtime.

Minnie (and Mickey) are the only stuffed toys that Hannah will play with and find comfort with.   Not only that, but Mickey and Minnie are, by far, her favorite characters to interact with.  Whether it be her Mickey Mouse chair that she loves to stare at, her Mickey Mouse DVD cover that she has almost worn out by holding it, her Mickey and Minnie stuffed animals, or her Mickey Mouse Clubhouse TV show.  She LOVES Mickey and Minnie.

I don’t know what it is about them, but I am glad she has found a strong “like” for something.  As silly as it sounds, I love seeing her choose favorite characters and toys among the many that she has.   I love seeing her get excited when Mickey Mouse comes on the TV or when getting really into a Mickey Mouse book.

I cannot wait to be able to take her to DisneyWorld or Disneyland some day!

Oh, guess what Hannah is going to be for Halloween this year?   🙂   Yep, Minnie Mouse!



About 10 days or so ago, Early Intervention came out to do their assessment of Hannah.  Though they didn’t use the same test that our service coordinator used in Texas, it was similar and showed the same results.  Hannah’s skills are still “scattered,” and she ‘rates’ between 8 months to 12 months old in all areas…physical development, adaptive behavior, cognition, communication, and heck, I forgot the last one.

But Hannah has progressed so dang much since she was released from the hospital the first time just 1-1/2 months ago.  She went from a baby who had no control over any of her movements, no strength, and could barely hold a pacifier in her mouth to a child who today is crawling all over the place, sitting up and playing, and eating baby food by spoon without any problems.  She still has some movements in her hands and arms, but that does not stop her from doing whatever she wants to do.

I can barely contain the smile on my face and the excitement in my heart every time we go to private therapy (3 times a week – OT, speech, and PT) and her therapist says “I can’t believe how much she has progressed in just 1 week!”

Even my mom, who has not seen Hannah in 3 weeks, saw her today (as she was picking Ethan and Abigail up to take them to Cali for the week) and noticed how much better Hannah is.  Not only does she look fuller because she has gained some weight and doesn’t look at skinny, but Hannah is doing so much more than when she last saw her.   Three weeks ago, my mom said she wasn’t crawling, and she wasn’t even trying to sit up by herself.

Now, Hannah is all over the place.  She has even gotten herself back to the point where she will crawl over to the couch and get up on her knees.  She tries to get her foot under to get to a stand, but she is just not there yet.  But I know that in just a few weeks or so, she will regain that strength too and will be cruising all over the place again.  My hope is that she can even start using her gait trainer in a month or so (her PT thinks it may even be sooner!).

What Hannah has pulled off after being in the hospital for 6+ weeks (28 days in the PICU) and was at the point where I feared for days that I would lose her  because she was so sick…to what she has done in just the 6+ weeks since being let out of the hospital.   Seriously, I don’t know if I could work at recovery as fast as she has — and she wants to, which I know is the key!

She wants to do so much, she pushes herself.   She does not like the trach and has pulled it out half-way twice, pulled out her g-tube mic-key button once, and she takes off her HME (the cover of the trach) at least 25 to 50 times a day.

She is AMAZING.

I took these pics of her today.  She was just sitting on one of her chairs with her toy desk, and she was just having a great time.

Stressed, overwhelmed, and sad…S.O.S.   That is how I am feeling right now.

We move in one month to Las Vegas (which I am really looking forward to).  However, Daddy still does not have a job after sending out over 100 resumes (with only 2 phone interviews, one in-person interview) in three months, complications with Abby’s encopresis, the “on hold” status of our life while we pack and prepare to move, the intense stress of the thought of having to pay rent on a house in Vegas while trying/hoping/praying that our house here in Texas sells (mortgage/bills plus knowing that it has to be repainted inside, powerwashed outside, plus new carpeting and possibly half of a new roof).  Yeah, money is a huge stressor in our life right now.  Between his unemployment and my part-time job (which I wish would allow full-time status), it definitely is not enough for our family of five to live on, especially with us still in the “out of pocket” portion of our insurance before we max out.

But I think the worst part of all of it, and the part that is bringing me real down today, is Hannah.  Reality is that I can see this disease is taking more of a toll on her, and it is killing me.  I see her eyes starting to get more fixed/crossed separately, and I know one day the strabismus (fixed, inoperable crossed-eyes) is just looming over her.   For now, she is able to get out of it, but it is becoming more and more noticeable.

Looking at her overall lack of progress over the past 9 months, it is strikingly apparent.  She is still a 9-month-old baby in a 21-month-old toddler body.   There are very few “yes” activities I can add to her 12-month-old list of milestones that were not there before.   Just even glancing at the 2-year-old milestone list,  there is not ONE “yes” I can add, and worse yet, she hits every single item on the developmental watch list on that page.

There are days, like today, I wish her communication was better.  I just wish she would even recognize her name when we call her.   With the exception of just a few commands, there is not much communication she understands.

Then there is her ear tube surgery this Friday.  The easiest childhood surgery there is.  Abigail has done it three times.  Yet, I am completely stressed out about it.  This anesthesia situation has me on pins and needles.  We already got the call from the hospital to preregister her since we are anticipating spending the night there for observation.  Simplest surgery — yet, I am completely stressed about it — just does not make sense to me!

Now I know she is going “at her own pace.”   It is just that it has been so long since we saw any real progress.   It just sometimes makes me sad when I get that realization at how “significantly disabled” she really is.  There is no treatment to help her, no cure that is near on the horizon.  No one saying “hey, we are really close to something.”

But I keep reminding myself how fortunately we are with her.  She is painfree.  She is on very minimal medications.  With the exception of her orthotics and gait trainer, she has no medical assisting devices to support her life.   She is happy where she is at.  She is smiling.  She loves her toys, the same toys she has been playing with for a year.   She loves her brother and sister interacting with her.  She loves to be read books.  She gets the biggest smile on her face when she gets picked up.

Today is just one of those days, I guess…