Feb. 15

Megan was feeling much better this morning than yesterday. Yesterday she slept the entire day until about 8 pm and then went back to bed at 10:30 and slept through the night. I think maybe the weekend of visitors and playing on the laptop wore her out. So this morning was a much better day to have to get on a weird chair to be taken for the swallow test. All of her other tests she's had to be taken in her bed. So they had her drink and eat Sprite, pudding, teddy graham, and frito with barium in them. It all said her swallow is weak, but working fine. So starting tonight she should start eating three bites of a soft food and gradually eat a bit more at each meal. So she just finished three bites of mashed potatoes and gravy. And that was all she wanted anyway so it worked perfectly.

After the test we came back to the room and rested for awhile until the oncologist came. He said all of her ultrsound scans from yesterday came back negative - yea! Then he told us about the lumbar puncture he was about to do. The nurses got her ready and she rode down to the PICU in her bed. The procedure went well. Her level of fluid was 24 cc's, and normal is 10 or less, but the normal psuedo tumor level is 30, so it wasn't horrible. He took off 9 so she is down to 15. We're hopeful it will help the pain in her head, eyes and ears.

While they had her sedated, the nurses, and then the oncologist, took out the one needle from her port. Then they put in a new needle in her right port and then had trouble accessing the difficult one, so the oncologist stepped in and accessed her left side port. Both went in and they hooked her back up to her feeding tubes and saline bag. Sooo excited! She still has her IV in her arm just in case, but hopefully they will be able to take it out.

So we came back and took a nappy until Megan actually woke me up asking if I was going to order dinner. She kept chatting away and I wanted to sleep some more...but up I got. :0)

Then the opthomologist came by and looked at her eyes again. He said they look the same. She still has pressure on the eyes causing her blurred and double vision. It gets better and worse off and on...kinda weird. He said the Horner's syndrom might not get better. He said to wait awhile and if it doesn't get better, she can have another surgery to repair the muscle and make her eyelid work better again. Great, another surgery needed. One for voice, now one for her eye. Going to be a busy summer between camps and surgeries!

Aunt Ann came by at lunch for a visit and Mr. Hale, the 7th grade principal at DuBray, came by tonight. He brought a banner that the 7th grade gold team made, all kinds of cards from her friends and teachers, plus flowers and candy. Carol dropped off a squishy peace sign pillow and the coolest sheets that fit an extra long twin bed. The hospital sheets were making her really itchy and the regular twin sheets we had from home didn't really fit. Everyone all day has commented how cool her sheets are. We made the oncologist promise not to get any blood on them during the spinal tap. :) Megan's one girl scout troop made her cards and a poster board and gave her an adorable blue dog that is wearing their troop shirt. So cute! My work sent a banner with lots of get well wishes and Mrs. Latore's 4th grade class from Mid Rivers Elementary made a big yellow banner "sending her sunshine and rainbows". Her 7th grade teachers sent her flowers and a very cute teddy bear that is hugging the vase. Her whole room is decorated with all the cards she has gotten from this hospital visit, plus the banners, flowers, gifts and balloons. The oncologist said it's the most colorful room in the whole hospital. :0) Thank you's to everyone!!