Emotionally tired

I am sorry that I have been terrible at keeping the blog and facebook page updated. I have been processing a lot emotionally and just did not have it in me to blog.  The past few days have been hard. On Monday, our little friend Raeleigh received the news that the tumor on her spine that left her without feeling from her waist down is rare and aggressive. The prognosis is only 25%. One minute the girls were having a tea party in the playroom and within 30 minutes the ambulance was here wisking her back to Children's to have a port placed so they could start aggressive chemotherapy immediately.  She is two years old and won't turn 3 until March. Please pray for the Vasquez and Hogue families.

Yesterday, we learned our 13 year old friend named Kaitlyn is not seeing the shrinking they hoped in her brain tumor. She also continues to develop issues from her brain tumor and medication side effects that continue to stump doctors. She is a precious girl who is a "big sister" to the little kids on our wing.  Being a 13 year old is so hard, much less having an aggressive brain tumor. She has lost all feeling on her right side and is not having some nyropothy issues that cannot be explained. Pray for her and her mom.

That being said it has been a frustrating week for me. I feel badly being frustrated and overwhelmed because I know there are kids like Raeleigh and Kaitlyn that are dealing with so much worse. We had our first inpatient care team conference yesterday. She is making steady progress and working hard in therapy. She has made some great gains in physical therapy.  Our tentative discharge date is February 25. That is three weeks from today. I admit I was disappointed as I wanted to be out sooner, but I am trying to focus on all her gains. It means a birthday in the hospital, but child life is planning a FROZEN ball. If you would like to come let me know and we can mail you an invitation. The team does feel that given Grace's diagnosis's that she will probably always require some sort of feeding therapy. That was disappointing. We are not going to take away all her medical formula from her diet as we had previously discussed. She needs the calories and depending on disease progression we can up the volume as necessary.

Here are some pictures from the last few days . . .

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Playing outside on Monday morning between therapies. It was chilly!

She wanted a bell on her bike like the ones in child life. Daddy made it happen.

She loves getting mail!

Doing a princess puzzle from our friend Heather and her family

She made this sign for our door

Isabella came to visit! We went to child life and painted.

I am so glad we brought the easel. She is in the room making a card for her friend Marcus who has pneumonia.

Our daily trip to the chapel to "make a joyful noise"

Sensory Science Lab! Making goo with our suitemate, Gabby

Goo! I was so proud of her for touching and playing!

Thanks for praying, my friends. We do covet your prayers!