Tuesday, September 25, 2012

Chicago Visit Impressions


Once again, it's been a long time since my last post. It has been so unbelievably busy in our life and so so much has changed and transitioned. Allorah just had her appointment in Chicago with Dr. Pachman yesterday and we are finally heading home. 
The new Ann and Robert H. Lurie Children's Hospital finally opened and all I can say is WOW! It is absolutely stunning. Here are a few pics.
Fish aquarium in 2nd floor entrance

Display in front of aquarium

Huge whales hanging from entrance ceiling

Check-in desk
PFT


She started off her day with a Pulmonary Function Test and all went well. She had a little difficulty with one of the tests but ended up doing real well. We then left there and went to the Outpatient center for Dr. Pachmans appointment. We had a beautiful view from our exam room.

Nail fold photos with Gabby
She had her nail folds photographed for research as she usually does and then had her PT and OT consult and shined!! Her CMAS scores weren't up 4 points!! That is the best news! She is now at 50 and we are so thrilled! Dr. P came in and was so happy to see her and how well she looked. She exams her and ordered an entire skeletal bone series X-rays to get done. She ordered labs and said if all looks well then we can start weaning her off the Methotrexate which is the chemo injection. That is great news! She needs to continue her exercises at home and increase her stretching and core work and then we have to come back in January. We then left there and went to get X-rays and lab work.

The new Ronald McDonald House was beautiful and so nice. There was a roof top terrace that had such an amazing healing garden and steps stones from some of the families that had stayed there and lost a child. It was so moving. If your looking for a charity to donate to, please consider the Ronald McDonald Houses. They are amazing and such a comfort when away from home because of a sick child. So our visit ended with an amazing dinner at Lou Malnati's there in downtown Chicago. Ahhhhhhmazing as always! They even just started carrying a gluten free pizza dough a few weeks ago and Lola said it was the best pizza she has ever had.