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!
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