Busy week ahead

Not only do we have the big fundraiser on Monday afternoon, but Hannah is also getting her Cerezyme treatment at the same time.  She made a huge impression at the school last week with the kids, but I think we are going to let her be more low-key on Monday, as her treatments seem to wear her down afterwards.

After the fundraiser, we have her OT assessment with Early Intervention.  We need to get this done in order to get ready for our IEP meeting in May.   Reminds me we need to find an OT that can work with Hannah at home.

Tuesday, we go back to physical therapy and get some more work on the stander.  She was only able to handle a few minutes last week, but we need to keep getting her in there so she can get used to it.

Wednesday, we are having our consultation with Dr. Raja, the new neuro.  I have heard good things about him, so I hope it goes well.  We really need to get a better handle on her seizures and movement disorder.  I also think we may have to bite the bullet and get the 24-hour EEG and/or the sleep study to see where we are with the seizures.  My gut tells me that if we can get a better handle on these two issues that she would be much more comfortable.

Hannah then gets to end the day on Wednesday with her developmental therapist at home.  She loves having play time with her.

Friday evening is our Make-A-Wish meeting.  Hannah has been granted the opportunity to make a wish, and as I have said before, we really would love to take the kids to Disney World/Give Kids The World.  Just seeing Hannah’s face during the parades with the lights and music — Wow!   A friend told me to make a list of anything else we really would love to have happen, and I am thinking some quiet one-on-one time with Mickey and Minnie with some of their songs.  I know if there are too many distractions, she will get overstimulated and not pay attention.   So some one-on-one time in a quieter area would be amazing.

I need to also have her CT of the abdomen rescheduled as well because I think her spleen and liver are starting to get even more enlarged now instead of shrinking.  She may need her Cerezyme dosing upp’d.