The longest day ever!... And MRI results

We made the trip to Stanford Thursday night for Delaney's MRI Friday morning. Oh, what a trip! We left Thurs. night after I got off work and ended up there at about 1am. Then we were up to feed Delaney at 5am and headed off to the hospital. Her MRI went well. A lot quicker this time and she woke up faster too. This picture is of her waking up. And it looks like she's eating, but no don't let her fool you. The nurses found out quickly how sneaky she is when they turned around she would pull off the leads to her heart monitor and stuff them in her mouth! Crazy girl. After she woke up they watched her for about half an hour then we were on our way to see her hematologist at the clinic. At this point Delaney started getting fussy, and still wouldn't eat so they gave her some Tylenol to see of that would help. From there we were on our way home. Delaney cried/coughed/gagged/choked the whole way home! She was in pain from the tube being down her throat when they sedated her for the MRI and she wouldn't swallow or eat. By the time we got home she was congested and panting to breathe and hadn't eaten anything in over 15 hours. We called the hematologist on call at Stanford and she said to take her to the ER. So we loaded back into the car and went to the ER where she was admitted right away. She had a chest x ray, some Motrin, some lidocaine to numb her throat, and a breathing treatment. Finally around midnight she was able to eat a few ounces and fell asleep with her oxygen mask on:) The Dr. said it was probably irritation from the breathing tube, but she sounded better and seemed comfortable so he let us go home around 1am. Longest day ever!
Delaney is doing much better now. She woke up the next morning talking in her raspy voice and ate like normal!
We received the results of Delaney's MRI yesterday evening. The Dr. said her mass has shrunk by 1 cm, which is good news, but it is still very large. She is not sure if it is the medication that is causing it to shrink, or just Delaney growing so we are going to continue to decrease her steroids. The steroids are what cause her huge cheeks and puffy face, and make her retain a lot of fluid. So, we continue to pray her mass will shrink! The MRI of her spine was normal. They were concerned about spina bifida, but there was nothing there. Also, she has been going to physical therapy and it was decided she will not need to wear a helmet. Thank God! If you know Delaney you know 23 hours in a helmet would not be easy.
So in the end it looks like things are headed in the right direction! We appreciate all the prayers and support! Delaney's next appointment is in 1 month.

Changes...

Delaney's MRI has been moved to Oct. 23rd. She is going back to physical therapy on the 19th. She of course does not like it. And most exciting of all... her grammy and paw paw will be here soon! She can't wait.

Ultrasound and Superstitions

Wednesday we made the trip to Children's Hospital Central California for Delaney's ultrasound. This test was to look for spina bifida because of an abnormal crease on her bottom.
The day started out nice with early morning pumpkin spice lattes and an easy 1 1/2 hour drive... nothing compared to our Stanford trips! Garrett and I have decided that we must be some kind of magnet for interesting people. As we were waiting in the packed radiology waiting room a man and woman with a little girl came and sat next to us. After hearing all about the little girls medical problems, the man asked us if we believed in superstitions. I answered "Um no not really", but that didn't seem to stop him. He proceeded to tell me that we all have a light inside of us or an auora and the woman that was with him (we still cant figure out how he was related to the woman) wanted to hold Delaney so that she could take on her sickness and heal her. There was a little bit of a language barrier so I asked answered with a puzzled look, "What?" He went on to explain usually in his culture they used one egg and some herbs, but she wanted to hold the baby to heal her. I quickly looked to Garrett to see if he had some kind of way to get us out of this, but of course he pretended to be looking at something very important across the room and refused to make eye contact. Thanks. So without wanting to hurt the woman's feelings, who was very sweet by the way, I handed her Delaney. She smiled gave her a couple kisses and then Delaney even realized this is too weird and started crying. After more interesting stories from the man, our name was finally called. We hurried to meet the nurse and gave each other a look of relief and of course started laughing.
The ultrasound went well. Delaney was such a good girl! She held still and only cried a couple times. The doctor told us that they she is right at the cut off age limit for being able to detect spina bifida with an ultrasound, so he recommended an MRI for a definitive answer. However, he did say he didn't think he saw anything and she doesn't seem to have any problems with development at this point. So our next big adventures are physical therapy on Monday and in a couple weeks Delaney will have her MRI and we will find out what the next step will be as far as treatment for her liver mass.
Oh, and as we left the hospital Garrett and I were walking out the door as a man dressed like a samurai warrior walked in. Garrett mumbled under his breath, "Bow to your sensei." We are discovering interesting people hang out around children's hospitals.