We have had so much going on lately that we haven’t really been putting much into getting ready for our trip to Disney World.   I have my “to be packed” list, and I have been working with Apria about getting Hannah’s formula and oxygen being delivered to the Give Kids the World resort, as well as a couple of other things.

Fortunately for my kids, every day for the past two weeks has been an exciting buildup to an amazing trip.   They were adopted by a wonderful group of women called the Disboutiquers who have showered them with amazing gifts!   Handmade matching Minnie and princess dresses and other outfits for the girls, fantastic shirts for all of us, disney pillow cases, travel journals and airplane busy bags, scrapbooks, crayons, and even an amazing Minnie tote bag and keychain for me!   Pixie dust galore!!  This is only just a part of the generous gifts they have received!

Every day the kids come home from school, they yell “Did we get any Mickey mail today?”   Sure enough, there is a box or two (or more) waiting from them from another generous hearted Disney lover!

It has been absolutely wonderful for them.  Not only because they have been spoiled beyond spoiled with the quality and uniqueness of their gifts, but Ethan and Abby now truly feel like this trip is just as much for them as it is for Hannah.    They definitely feel the magical Disney spirit every day.

To be adopted by this group has been a gift on top of an amazing gift!  And that is what I have always wanted for this trip…for Ethan and Abby (and Hannah) to be treated as if they are the most special children in the world and going on an amazing trip that is one-of-a-kind.

Things are definitely coming together for this trip, and I am so dang excited now!   Seeing just 10 more days on the countdown clock is just so exciting because tomorrow it will be single digits!    We meet with our Make-A-Wish granters on the 21st to finalizing everything — yay!

I was so thrilled that the peds nurse in the Radiology department was hung up with another child today because we were given the option to make an attempt at her abdominal CT without sedation.  Hannah was exhausted, but I jumped at the opportunity.  Worst case, it wouldn’t work, and we would just have to wait longer for the peds nurse.

Hannah did great!  They secured her in a contraption that swaddled her body so she couldn’t really move her legs, but they let me stay with her the entire time.  I held her hands above her head (as I was instructed), and I sang “blackbird” to her a few times while she was moved in and out of the CT scanner.   Singing worked like a charm, and she had a smile on her face the entire 5-minute procedure.

She did great!!    Hopefully we get the results next week.   But I was so thrilled to avoid sedating her for this!

We have a lot of things that we need to do before we go on our trip to Disney World in just 11 days!   ELEVEN days!   Yikes!

Later this morning, we are going to go to the hospital so Hannah can get a sedated CT scan of her abdomen.  I’m fearful that her spleen and liver have actually enlarged over the past year, which would mean that the Cerezyme isn’t working as well as it did.  Also, her latest marker numbers from her Cerezyme were starting to rise above normal again.   It may be time to raise her dosage from 800 units even though she is at the right dosage for her weight.

I’m nervous about her being sedated, big time.   After what happened last summer, I’m convinced that her movement disorder was brought on by oversedation when she was hospitalized.   So I plan to have a big talk with the team doing the CT beforehand to make sure they use as little sedation as possible, just enough to keep her asleep while she is in the CT scanner.

She has a PT appointment scheduled after the CT, but I am not sure we are going to make that one.   I really, really want to find out the status of getting her stander, however!

Tomorrow, we go to try on her new DAFO braces…finally!   We first got fitted for them back in December, and then those fell through the cracks, and she was refitted last month.   She NEEDS these braces.   She wants so bad to try and stand up, but her ankles and lower legs are so weak, they give way in just a few seconds.  Hopefully with these braces, we can actually start working on building up her muscle strength in her legs and lower part of her body!

Friday, we have a meeting with our early intervention OT for an evaluation.   We NEED to get her ready for transition to the school district.  We start that process next month!   We have been trying to get this appointment scheduled for months — either she can’t make it, wrong date is scheduled, or Hannah just isn’t up for it because she is sick.  Keeping my fingers crossed about this one!

Next Monday is her Cerezyme.

Next Tuesday she goes to her first dentist appointment!   Even though we have the nurses use the oral Toothettes, we have noticed some decay starting on a few of Hannah’s teeth.   This dentist has quite a bit of experience with special needs kids, so I’m really looking forward to seeing how this appointment works out.  Because it is during Ethan and Abby’s spring break, they are also going to go for a checkup as well.  I’m sure having her big brother and big sister there will make things much easier!

Then next Thursday, just a couple of days before we leave for Disney World, Hannah has a home appointment with her early intervention PT, whom we love!  She has pushed Hannah harder than any other PT we have ever had, yet Hannah works the hardest for her.  I know that having therapy at home for Hannah is a HUGE positive for her because she is working in a place she is totally comfortable in.

In between all of this is closing escrow (hopefully) on our new house, packing for our trip, a couple of appointments with Hannah’s development therapist, and Ethan and Abby home all next week for Spring Break!

Lastly, we are breaking in more new nurses.  Argh!   We have two new ones this week, and I’m hoping that they are a good fit for us.   If not, we will be working with more next week, I’m sure.   We NEED the stability of good nurses again.  It has been months since we have been able to have a good team that we know will show up each day.

A week from Saturday, 4/23, it is off to Disney World and our trip of a lifetime!

As familiar as I have become with ADD and ADHD over the past few years, I am starting to wonder if I have developed stress-induced ADD.

Yeah, I know, it isn’t a real diagnosis.   But I feel like I fit the symptoms to a “T”.   I even googled it, but I couldn’t find anything that fit other than my favorite word, “overwhelmed.”

• Trouble concentrating and staying focused – Check!
• Hyperfocus (Hannah’s medical issues) – Check!
• Disorganization and forgetfulness – Heck yeah, big time check!
• Impulsivity – Check!  (But may be ‘pre-existing’ to be honest)
• Emotional difficulties – Hmmmm, maybe.

I suck at organizing these days.  I mean, I wasn’t great at it in the first place, but these days I feel completely lost and disorganized.  I never really felt settled here in Vegas, even though it is coming up on a year, because as soon as I moved here we had Hannah’s severe medical issues and recovery from the moment the mediflight ambulance landed.   We never unpacked this house completely nor made it a home.  Very few pictures on any of the walls, things still in boxes, and very little sense of organization here.

I keep hoping that once we are in the new house and that I get to start over with a fresh, clean slate that I will be able to start getting the feeling of a better handle on my life and responsibilities because right now I feel completely lost.    I have 500 things going on in my mind at a time, 100 projects or things I need to start working on, and 50 must-do things that I seem to keep forgetting to do.

I miss feeling productive.  Sounds stupid, probably.  But I don’t feel productive at all these days.  I feel like I am always trying to catch up, cover, and just do enough to make it through to the next thing.  I miss the feeling of having a ‘content’ life.  You know, things in place, routine, and just a sense of organization in some aspects of my life.

I really, really hope that once we settle in the new house next month (we should hopefully close escrow this week), getting Hannah’s nursing situation finalized with a good team of nurses, and get pictures up on the walls again that I will finally be able to start focusing more on what I need to do.