Every two weeks since she was 6 months old, Hannah has received her Cerezyme infusion for her Gaucher’s disease. It takes about 2-1/2 hours, and most of the time she sleeps through the infusion.

They say it doesn’t cross the blood-brain barrier, which I know is true, but it does not only prolong her time with us but gives her a better quality of life as well by ridding her body of the bad fat in the spleen, liver, bones, and lungs.

Someday they will figure out how to make it help in the brain.  I just hope that someday is while Hannah is still here with us.

 

 

 

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

When I saw the three of them through our front door gate with a huge Minnie Mouse stuffed animal, Minnie balloon, and carrying an armful of toys, it caught me off guard!   I just wasn’t expecting that!   Not only did they bring gifts to shower on Hannah, but they brought very thoughtful gifts for both Ethan and Abigail.   Ethan and Abby were thrilled and played with them the entire time the grant team was talking to us!

They knew beforehand that we wanted to take the kids to Disney, and we knew as soon as we saw the big Minnie Mouse that there was a good chance this wish would be granted.   We discussed how our main wish is to stay at Give Kids the World and to take the kids to Disney World and to Universal Studios (Ethan is dying to see the Harry Potter show).   They even mentioned Sea World as a possibility, which is my favorite place in the world!

Hannah was in a great mood during the 90-minute visit, showing off her beautiful smile.  Granted she played with the iPad most of the time, but she was just so happy so that was good enough for us!

We talked about what medical needs we would need to prepare for in order to travel, what things they need to be aware of (like Hannah’s heat intolerance issues), and dozens of other questions that were obviously asked in order to give Hannah the most comfort and fun.   We talked about noises, smells, and other things that could affect Hannah’s enjoyment.   What was great was they asked questions that were important but I would not have thought about it.

We also discussed a backup wish, just in case this one can’t be granted.   We assume that if this one can’t be granted, it is most likely because Hannah would not be able to travel or tolerate the trip.   So we came up with asking for a backyard playset for the kids that had both regular and special needs equipment, covering to block out direct sun, and a foam floor for safety.  It is something that we have always wanted to get the kids, but it is just too dang expensive for us to do right.   So it is a perfect backup wish, just in case.

Because of Hannah’s issues with the heat, we are hoping to go sometime within the next three months before the summer heat hits in Florida.

The next step is to have Dr. Bernstein, her specialist here, approve our request and then the MAW team puts it all together and we continue the planning from there!

I’m very excited.  I will admit it.  What I am most looking forward to (if this does come to pass), see Hannah’s face with all the lights, bright colors, and sounds.   Also, I want Ethan and Abby to be spoiled beyond spoiled for the week – they so deserve it!   Best of all, I want Ethan and Abby to have memories of an amazing trip with Hannah, something special, something they will always cherish.

The World Rare Disease Day event at the kids’ school was a HUGE success.   I would even dare to say it was a massive, extraordinary, amazing success.

When we got to the school with Hannah at 1:30 pm, we saw quite a few kids playing on the playground.  About 90% of them were wearing blue denim jeans!  The entire staff wore denim jeans too!

We started off at Ethan’s class first, and the kids in the class were all working hard on their bracelets.  Not only that, but there were at least 5 parent volunteers that wanted to help and be a part of this event.  As soon as they saw Hannah come into the room,  they all said, almost in unison, “Hi Hannah.”   Ethan came running over, and you could see the excitement in his face that we were there.

Mitch Truswell, who does the PR for the Children’s Specialty Center, was there along with reporter, Jeff Mosier from The View magazine, a local weekly newspaper.  It was great to finally meet Mitch in person, as we had been emailing back and forth for the past two weeks on these events.

We spent about 20 minutes in that classroom, and then we went to go to Abigail’s class room.  Unfortunately, they were at PE, but it worked out because we were able to sit down with the reporter for about 20 minutes or so while he asked us questions about Hannah, her form of Gaucher’s disease (type 2/3, not 1), as well as ask questions to the kids.

Ethan was so funny about it.   When the reporter asked him a question, he answered as if he was reading from this cue card in his head as to what he is supposed to say.   I wanted him to answer from his heart not what he thinks the reporter wants to hear.  Abby was a bit more shy, but she did great too.

Thank you, thank you, thank you to Ms. Maggiore (school principal), Jennifer (who spearheaded this whole thing), the entire staff, the parents who volunteered (and there were so many), Sandy at the Bead Jungle who donated her supplies and assistance without a second thought when we were down to the wire with timing, the companies that donated over 12000+ beads for the kids, Mitch, and most of all, to all the kids at the school for their incredible enthusiasm that they brought to this project!

There is even talk about making this an annual event at Vanderburg!

If you want to see more wonderful pictures from the day, Mitch uploaded some to the Children’s Specialty Center facebook page.  Click here to check them out (and give them a ‘like’ too – they are the best thing that has happened to Hannah in this city!)

Of course, I am horribly critical of myself, but I think I did a decent job on this interview (but boy do I look old and tired in this 4-minute piece!).   I haven’t figured out how to embed it in here yet, but hopefully I can get a digital copy of it so I can upload it to youtube so I can keep it forever.

CLICK HERE FOR THE VIDEO OF THE INTERVIEW

Here are some screenshots.   Hannah was even more squirmy and unhappy than I remembered.  If people who saw this video realized that Hannah is mostly smiling and happy and rarely do we get such a sad little girl!   But then again, she just wasn’t feeling great today with her stomach bug plus waking up at 5 am (2 hours earlier than normal).

 

I have been getting so wrapped up in all the events for the next few days that I took some time going back through some of the videos of Hannah I have taken over the past two years.   She is so dang cute!   It is hard because I can see the disease progression just between these videos.   She has lost so many skills, especially fine motor skills.  I also miss hearing her voice like I could in the early videos before her trach.

In interest of fun, I want to share some of my favorite Hannah videos. If you aren’t on facebook with me, you can see a bunch more on our youtube page.

My all-time favorite video – 3 months old

In her exersaucer – 6 months old

Learning to babble – 9 months old (wish we never lost this skill)

Chasing her brother in her walker – 18 months old

Finally getting the concept of “putting in” – 20 months old

Learning to color – 29 months old

Hannah and Glee’s IceIceBaby – 30 months old

Hannah and her ball popper – 32 months old

Hannah just love her ball popper. Even though you can’t hear the sounds of laughter because of the trach, you can definitely see her loving this toy. You can also see how her movement disorder affects her, and what I found interesting after watching this is that her laughter and smiles are stronger than her movement disorder in her face. It is when she stops laughing then the movement disorder kicks in.