I came across this website while reading about Disney trip planning:
http://www.themouseforless.com/downloads.shtml#kids

I think I’m going to put together a fun book for the kids to do during any downtime we may have plus during the flight to/from Florida. I love the idea of giving them a fun book with mazes, word searches, fun facts, and things like that, and I will get some crayons to bring along with them! Those journal pages they have on this page are fantastic as well, and I would love for them to write their own memories down (if they will actually do it is another story).

Kids Travel Journal
Word Search Puzzles
Trivia Questions
Walt Disney World Character Find List
Printable coloring pages

I also read about the trading pins idea because I know they would have fun with them while we are there. We would not get them a ton of pins, but if they could each pick out a few of their favorites, that would be a great momento.   Also, I think it would be fun for them to trade them with the cast members who work at Disney.  Just a possible added bonus.  Definitely something to think about.

We are also going to bring a ton of pennies and quarters on the trip so the kids can do all the penny presses. We started a collection of them a few years ago for the attractions we had visited. I will have to come up with a way to store them – perhaps a penny press book? (Something else to look into).

We are also going to get the kids an autograph book. Even though they have done Disneyland before and wasn’t interested then, they apparently are really interested now. Especially Ethan!  He asked me to make sure we get Hannah an autograph book because he is going to ask the characters to sign her book for her. He is actually more interested in making sure SHE gets the autographs then he is if he gets the autographs. He told me when we get home he is going to get character stickers and put them on the pages so Hannah knows which autograph it is.  He is SO dang cute. I love the fact he still believes in the Disney magic.

I also am going to print out some Mickey and Minnie printables for Hannah. Even though she can’t color in the traditional sense because of her fine motor issues, I think it would be a great page to keep practicing on!

If anyone else has any inexpensive yet fun keepsake suggestions, please let me know. I want the kids to have lots of fun tangible momentos from this trip (besides the 10,000 pictures Daddy and I will likely take)!

On a completely separate note, writing this post reminding me of the video I have of Hannah practicing her coloring from a few months ago.

I spent much of my time today figuring out how to get all the equipment we need for to Florida.   For some reason, the rest of the normal travel packing seems like a piece of cake so I haven’t even started that yet (except for my list).

I was trying to find where we could rent a stroller-wheelchair (like an Otto Bock Kimba Spring), get supplies to Give Kids the World, fly on the airplane with Hannah, etc.   I sent about a dozen emails and made a few phone calls to equipment rental companies here in Vegas and Florida with no luck on that stroller (or something similar with the support we want).

I received my first “Phew” email response from Give Kids the World.  We are able to ship supplies ahead of time (like two cases of Hannah’s formula plus other stuff) directly to Give Kids the World!  Not only that, but they said they get deliveries daily from our medical supply company, so we can also have them send the stuff directly!

Then I got another email this evening from our Make-A-Wish coordinator who told me they are working to get us the portable oxygen, flight safety harness, and other questions I had.   I was taken aback because to me this is above and beyond the “call of duty!”   They really are working to help us make this trip as seemless as possible!

The only other equipment we need to get is a bath chair for Hannah, but I think once we have that and the portable oxygen, we should be good to go since we will be bringing our own suction equipment.  We aren’t going to bring her humidified trach collar because she hasn’t been using that in the past few weeks because she seems to wake up more with it on.  It is just easier to keep giving her the drops to keep her moist – it keeps her sleeping longer!

I also learned today that Disney World has a “Wish Lounge” off Main Street where we can bring Hannah to decompress and take a rest/nap without having to go back to GKTW.   I can see us using that at least a few times!   I know her experience will be better if she has time to come down from all the over-stimulation that she will be seeing.  Awesome!

I know, I sound like a broken record, but I’m starting to wonder again if me doing this night nursing is the wrong idea.

I know my intentions were good.  I wanted to be able to have free time with Ethan and Abby after school and on Saturdays without having to worry about Hannah.  I also wanted to be able to have a nurse with me for appointments because it just isn’t safe to drive distances more than 5 minutes with Hannah alone (when she gets upset, she pulls at and out her trach).

But I feel like I’m missing so much.  I end up going to bed at 5 am or 6 am every day and sleep until 1 pm or so in the afternoon.  I feel like the day is all wasted.   Not only that, but Hannah is usually asleep at night, so I don’t really get playtime with her (unless she wakes up at 2 am or 3 am or something, which happens about 1/4 of the time).   There is a part of me that misses being her #1 playmate and friend every day, a huge part.

I have been giving some more thought about changing to night nursing, 11 pm to 7 am, 7 days a week so I can be more regular.  But then I will never have any respite break, and I will lose my car-partner who will help me take care of Hannah on car rides to appointments.   Also, I would have to start bringing Hannah with me to pick up carpool every day, which isn’t a quick and easy task to do.

Our regular nurses have been becoming unreliable lately, and we have had quite a few new backup nurses.  I know our regular nurses love Hannah like crazy, but if we can’t rely on having someone here on a regular basis, it is very difficult, especially if the nursing company doesn’t have a backup for us.   When that happens, I am the one who has to be up for more than 30 hours straight.   Our new backup nurses and new Monday nurse are really good, which is a positive and a pro for keeping things the way they are.

I just don’t know.  I feel like everyone else in our situation has this all figured out, yet I don’t know if I am really doing the right thing!   Daddy and I talk about it often, and we both just don’t know what is best.   If we felt Hannah would be safe by herself at night, then it wouldn’t be an issue.  But there have been way too many close-calls where she will arch her neck and her trach starts to pop out.   Not only that, but I don’t end up finishing feeding her the night formula until 2 am or 3 am.

If we could just get another 15 hours a week or so, then we could get some day nursing help to cover appointments and homework and such.    But the only way for us to get more hours is for Hannah’s condition to deteriorate more, and I would rather do night nursing forever and just ‘deal with it’ than to have her suffer any further.

I just really wish I knew what was best.

Thanks to a fantastic, wonderful Make-A-Wish volunteer, we got our approval for Disney World and Give Kids the World bright and early this morning.  To say I was excited is an understatement.   Just knowing that we are getting the opportunity of a lifetime to spend a week together with no homework, no therapies or doc appointments, no daily stresses — PRICELESS!

So I whipped together a letter for Ethan and Abby (the one on the left), and I addressed an envelope to each of them.  I gave them the letters when they got home.  Since I put their full addresses on the envelope, they didn’t realize it was from me (smart mom, huh?).

They both started opening them, and Ethan (being older) read it immediately and started silently screaming and jumping up and down.  It took Abby about a minute to get hers open and actual read the words, but once she did, she looked at me and said, “Is this for real?  Are you sure we are going?”   She really didn’t believe it.

Once I told her that we really were going, she started jumping up and down with Ethan and talking a million miles an hour to each other.  Hannah was right there with us, and she had a huge grin because they were so animated and probably looked very funny to her!

We did make a promise to Abby that we would celebrate her birthday (which is coming up in a couple of weeks) at Disney World because we just can’t put together a big party for her this year.   So now that Disney World is a ‘go,’ we are going to have a park party for her birthday with just a few of her friends and let her celebrate her birthday at Disney at every single meal and every single ride.

I remember when we did Ethan’s 3rd birthday at Disneyland, and he got a button that he wore on his shirt.  He must have had 100 people wish him a happy birthday!

Can you imagine that kind of treatment for 7 days?  Yay Abby!

Now the planning begins.   We are meeting with our MAW volunteers in a couple of weeks to go over logistics, but I’m just so excited our family gets this opportunity.   We would never be able to pull off a trip like this on our own with Hannah in the condition she is in these days.

Abby has only one request in her planning.  Matching Minnie Mouse and Disney princess/fairy dresses for her and Hannah!  (Goes along with her wanting matching sundresses for her and Hannah this summer).

An amazing, amazing, amazing gift!

 

We seem to be in a holding pattern in many important areas in our life right now…

• New house closing and moving. It has been taking forever to get the bank that owns the new house to get the electricity turned on so we can get an inspection of the house!  Hopefully they will do it by the end of this week.   We are supposed to close mid-April, but we still have the right to refusal up to a few days after the inspection is completed.  We just want to make sure everything is working before we get excited about moving!
• Overnight sleep study and EEG. Right now, Hannah’s body is still.  No seizure activity at this moment, thank goodness.  She still goes through spurts during the night where I notice some slight twitching, but until we get this test, we really don’t know what we are dealing with … subclinical seizures, sleep apnea, nothing?  We have to wait until the flu season is far behind us because Hannah has to sleep in the hospital overnight, and we don’t want to expose her to any undue risk.
• Stander, chair, hell… We ordered the stander and chair back in the beginning of December 2010.   We are no closer to getting them it feels like, especially the stander.  Something about pre-authorization then special ordering to fit…  All I know is that Hannah is continuing to lose tone, and we have very little to use to help her bear weight safely on her legs to build up her tone.  Ugh!   She doesn’t even try to get to a stand from the side of the ottoman anymore.  Kills me to see this obvious progression.
• Make-A-Wish trip. Our first tentative dates are just one month away, so we have not been doing much planning or preparing just yet.  Every day Ethan asks me if we get to go and goes through our Disney World Planner.  Abby is more reserved and more aware of the “maybe” aspect of things.  When Ethan asks her if she has picked her two rides she wants to go on for sure, she always answers, “We don’t know if we are going yet.”   Hopefully we will hear one way or another this week.
• Klonopin level. Hannah’s movement disorders still have periods of being pretty significant, so we are waiting to see what her new Klonopin therapeutic level is.   Last time, she was at 11 (with 30 being low-normal).   We bumped up her Klonopin 0.5 mL three times a day, and her movement disorder definitely improved.  I still thing she still may need another bump, but we want to see what her numbers show.   She got bloodwork done last Thursday at her Cerezyme infusion, so it should be available any day.

I’m really excited about moving to our new house.  The idea of being to really settle down is SO thrilling, you have no idea!   Being able to paint the walls the colors we like, unpacking every single box, poking holes in the wall to hang up pictures, changing out fixtures to match “our style.”  Most of all, just being HOME!

The thought of being in our new home and unpacked is making my heart race with excitement!

I was watching a show on TLC about lottery winners.   It put me into a dream state wondering what I would do if I suddenly had millions of dollars.   What would I do?

• By a decent-size house with decent-sized rooms for the kids, a loaded therapy room for Hannah, an office for me and Daddy, and a playroom for Ethan and Abby.   Oh yeah, can’t forget the pool, which was #1 on Ethan and Abigail’s “new house” wish list.
• Hire a house cleaning service to come once a week
• Get Abby an afternoon tutor one or two days a week to help with those areas that she is stubborn when I try to help her with.
• Pay off all our debt (probably goes without saying)
• Hire a nurse/nanny to help me with appointments and such and then use our insurance-paid nursing hours for night nursing so I could have a normal schedule.
• Load up Ethan and Abigail’s college funds
• Put together a research team to focus on what treatments that are available today could be used for Hannah to help buy us time and keep her comfortable (very similar to the SOAR project)
• Start our Little Miss Hannah non-profit foundation and focus whatever time I have left on making that successful.

The funny thing is that I wouldn’t buy expensive cars or mansions, go on fancy vacations, or anything exotic like that (although I do admit I would love to be able to just go shopping again for non-necessities!).   I would focus on spending more quality time with my kids without the stress of worrying about what bill we are going to have to hold off on with Daddy’s next check.

• Not having to worry about cleaning, laundry, or bills…
• Not doing the night nursing anymore so I can focus on Hannah during the day and then the kids after school…
• Knowing that we would have someone medically competent around so Daddy and I can actually start having dates again…
• Having my own research group that I can work with directly to turn over every single leaf that may have something to help keep Hannah with us…
• Removing Daddy’s stress about being the sole income…
• Not having to rely on insurance and medicaid for getting those items that we know would help not only make it easier to take care of Hannah but would also help her develop more skills all around…

Ugh, I need to wake myself up ….

Maybe I should play the lottery.  After all, look at the odds we hit with Hannah getting nGD!