Sunday, March 16, 2008


Hi All!!!

Sorry for the lack of updates. All is well with Missy Miss. The first pic is her in her Olivia Newton John phase ... oh and she LOVES taking off her diaper also ... lovely!!! She has a rash around her mouth but it is due to us using steriod cream for her other bumps. We stopped using it and it should go away soon.
She received her first set of shots two weeks ago. For those that do not know, when she received her chemo that erased any inoculations she received previously. So she is starting over on her immunizations. She has a runny nose but I think that is from them and she actually got a few of us sick ... oh well.

We are in contact with her donor and sooo excited about it. Hopefully we will meet up this summer and be able to enjoy meeting the person that gave Dani a chance at a normal life.

We cancelled her eye doctor appointment because we had winter weather that day but I did not think they would get much out of her anyway since she is still not wearing her glasses. We will reschedule for later on in the year.

She is still having a helper come every other week to make sure she is on track and we are starting speech therapy. She will get these services until December and then we will decide if she needs to continue. Personally we are very happy with her progress and her development but the three year mark is kind of a stutter stop with Hurler's patients so we shall see how all goes. We would rather her have extra benefits then let anything slide.

Next appointments are very early in May. She will go to clinic for her 18 months post transplant visit and her cardiologist. I will update after Easter (cause you know you want to see her in her easter dress ....) and after those visits.
Final note ... there is a MPS Bowl going on at the beginning of April. All proceeds will go to the MPS Society. If ANYONE wants to attend please let me know. Jason, Gabe, Ethan, and I went last year and had a WONDERFUL time. Dani will attend this year. April 6th is the date and it is $25 to register. With that you get an MPS T-shirt. Please shoot me an email at if you want to come. It will help with research and families in need.

We all are ready for spring and summer!!!!!

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