Karma

I am hoping that karma comes knocking at someones window. You give what you get also comes to mind. I have no patience for cowards or dead beats and all I can do is sit back and smile at how pathetic some people's life has turned out. If you associate with trash then you become trash! Period! That is all!

Happy Halloween

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.

Lab Time

So here we are the lab once again. It seems like she was just getting a bazillion labs a few weeks ago..... Oh yea, she was!!


So today she went in fasting for her endocrinology labs. Her appointment is on Thursday in Albuquerque with our beloved, Dr. Kauffman. These labs today will determine whether or not she will be on insulin. This was her last opportunity to maintain a very strict diabetic and gluten free diet and get a better control of her sugars. She has been doing great since we went to Chicago for her last appointment with Dr. Pachman. I'm so proud of her. So hopefully Dr. Kauffman will get great lab results and forego the insulin therapy. Let's keep our fingers crossed. Now we just have to get her cholesterol and lipids down and that will be another milestone. So a trip to a pediatric cardiologist is in our sights.
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Graduation Weekend

Thank you to all our family and friends that came from near and far to help us celebrate this day, we love you all!
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Graduated!!

She has been unleashed on the world!!











I can't believe I have a high school graduate! It seems just like yesterday that you were graduating from preschool...



And here she is a grown up!
We love you Jo and pray you continue to grow into an amazing woman who continues to reach for her dreams!
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This is my beautiful view during my evening runs!


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