I remember taking this picture back in January.  Hannah was sick, just not feeling well.  If I had taken a picture of her today, it would look very much the same as this one.

It started a couple of months ago.  We noticed she wasn’t herself, but it was not very noticeable.   Then a week before our trip to Florida, we noticed that she was really “under the weather.”   Now that we have returned, she still is not herself, but she is getting worse.

She has stopped crawling.  She has developed significant ataxia (balance problems) to the point where she can’t even sit up unassisted without falling over.  Worst of all, her movement disorder is the worst we have ever seen it, even with the increase in Klonopin.

She doesn’t want to play.  She only wants to be held and cuddled.  On the rare occasion, she will sit and watch her Wiggles on the iPad, but even then you can see her struggle (and sometimes fail) with her balance.

Something is going on.

We had one of our favorite backup nurses who we haven’t seen in a few months today.   She commented on how much different Hannah’s disposition is between the last time she saw her and today.  “She is like a totally different child.”  And not in a good way.  She reminded us that just since her last visit in early March, Hannah was crawling from one side of the room to another and that she “had to chase her around the room.”

Her trach gook has been clear this entire time up until tonight when it started getting cloudy.

So what is causing this rapid deterioration?

An infection?   Progression of the disease (but this fast?)?  Could the increase in Klonopin over the past couple of months be causing these ataxia problems (which is a possibility)?  Combination of any of the above?

We got an emergency appointment with her neuro for Tuesday, but I think we may even check in with her pediatrician on Monday.   Something just isn’t right, and I just don’t know what it is.

I knew this trip was going to be hard on Hannah. After all, she isn’t used to having such jam-packed days in a row like we did in Florida.

But I didn’t expect her to catch a bug of some sort.   She has been running a low-grade fever for a couple of days (today being the first fever-free day) plus she just isn’t her playful self just yet.  She really just wants to lie down and be cuddled all day (with the exception of sitting up to watch her Wiggles on her iPad).  She is just really exhausted.

Her Tuesday thru Thursday nurse has been absolutely wonderful with trying to slowly get her back into a routine.   She has been putting on her DAFO braces twice a day for 30 minutes, and Hannah has done really well in tolerating it even if she isn’t bearing any weight these past couple of days.   Hannah has no interest in the stander at all and very little interest in sitting in her chair.

I got an email from the guy who ordered our stander, and it is ready!  They just have to make sure it fits Hannah’s size requirements, and then they will bring it out to us.  You know, I can’t even remember what color we ordered…that is how long it has been!

Tomorrow and Friday are more easy days for Hannah.  No appointments except for her Early Intervention specialist whom Hannah just loves so it will be more like playtime than work.  Also, thanks to a wonderful generous donation by my friend Julie, we are able to order Hannah some of the therapy items we have been longing for this past year including a special needs swing and therapy bench!

We got the keys to our new house, and we went by after school with the first of many loads of boxes to deliver.  We figure the more boxes we move ourself, the less money we will have to pay movers if they just do the big furniture-type stuff.

As for me, I think I’m coming down with something too.  I have had the beginnings of a sore throat all day, and I’m starting to feel like ick.   Great timing, no?

I am hopeful that with this week of Hannah just resting and slowly getting back into a routine that she will want to be more active next week!

In less than 8 hours, the limo that Make-A-Wish arranged for us will be picking us up to take us to the airport for our Disney World trip.   Ethan and Abigail were so excited that they didn’t fall asleep until 11 pm.

The bags are packed for the most part, only the toiletries and the kids’ toothbrushes remain unpacked as well as my laptop.  We ended up with 3 check-on luggage and 8 carry-ons (two medical bags, my purse, and a carry-on for each of us).

Whether it was fate or coincidence, our medical equipment company had come out on Thursday to measure Hannah for her stroller wheelchair.  When we were talking about the trip, he had said that they just received a donation of a stroller-wheelchair just a few days prior and if we wanted to borrow it for the week, we could and that he would adjust it to her specifications so we didn’t have to bring her in to pick it up!   It wasn’t the same brand as the one we are getting, but it still would do everything we needed.  Talk about a godsend!

After picking it up Friday afternoon, we tried it out with Hannah.   We knew that Hannah has been having a really difficult time keeping her balance in her regular Chicco stroller because we were constantly trying to adjust her for comfort.  But it wasn’t until we saw her so comfortable and secure in this stroller that we realized how much her balance and control has been lost just over the past six months.

It was just another slap in the face reminder that her disease is progressing faster than we had realized when looking at her day-to-day.   Even looking at pictures and videos from just six months ago shows her to be stronger and in more control of her movements.

Even though I’m excited for our trip to Disney World, I can’t help but have bittersweet feelings about this whole thing.  Daddy and I have both talked about how the purpose of Make-A-Wish is for kids who are losing their battles with illness, at least in our respect.  The whole “last great wish” thing.  I remember that part of me that wished Hannah wouldn’t qualify for MAW because that would mean that she wasn’t really as sick.

But it is time to tuck these feelings away for now.  Time to spend seven amazing days living an adventure that we could never do ourselves.   Time to just be a family without the stress of doctor visits, therapy, and treatments.

Time to just have fun together as a family of five and create fun and happy memories that we will cherish for our lifetime.

 

We had our meeting with the Make-A-Wish volunteers tonight.

They came to bring us our itinerary, talk about the trip, and even spoiled the kids with some really cute pajamas!  Abby and Hannah got matching Minnie Mouse pajamas, and I KNOW that is a picture waiting to be taken.   They also got Hannah an adorable summer outfit, shoes, and sunglasses for the trip.   They also gave us our MAW Tshirts and blue pins!   They also scheduled an early morning “breakfast with Minnie Mouse” for mid week — I just hope we can get Hannah up to make it!

As we were going through the plans, it turns out that the MAW coordinator had to change our departing flight from Saturday evening at 5:30 pm to Sunday morning at 10:00 am.  It seems that our very early arrival (right after midnight) on Sunday morning would not have been doable by the Give Kids the World resort because they would have no one there for us.

Even though I am a bit bummed because we no longer get to spend Easter day there and do the GKTW activities, I know that it is only a small nugget of the amazing experiences and events that we will have this next week and the memories that we will get to create.

Abby was 4 years old when Hannah was born.

A few months before Hannah was born, it was time to prune Abby’s wardrobe and take out all the clothes that didn’t fit her anymore.  Usually we donate them, but we knew that I was having a girl so we put the good ones aside into storage.   Most of the items were a size 4.

I remember pruning Abby’s wardrobe again about a year later, after we received Hannah’s diagnosis and a prognosis of just 9 months (of which she was almost there already).  I was very hesitant to do it at first because there was that nagging prognosis in the back of my mind wondering if Hannah would ever get to wear the clothes I was putting in storage.   After all, she would have to be a size 4 for them, which means she would have to survive a couple of years at least.  I kept fearing that she never would see these clothes.

Fast forward to tonight.   As we started packing for our Disney World trip, we realized that we have very few shorts for Hannah.  We have one pair actually.  Because of her enlarged spleen and liver, she would need a size 4 elastic shorts.

Daddy and I broke open the box we had in storage for the last three years labeled “Hannah’s Big Girl clothes.”  Abby’s old clothes were right there, as were the flood of memories of Abby in these clothes and the fear of Hannah not seeing her first or second birthday.   Although I just started going through the clothes that were mostly winter, we did find a pair of shorts that were a size 4 and fit Hannah perfect.  Ironically, they were Disney princess jean shorts!

Hannah is finally wearing Abby’s old hand-me-downs.   To me, this is an amazingly huge milestone in our lives and this journey.  It may seem trivial to some, but it is so far from that!    I’m so proud that Hannah is now going to be wearing Abby’s old clothes.