May 30th and 31st

Yesterday was a big day for Megan! She moved up from pureed food to mechanical soft. This is more like regular food. She had pasta and chicken for dinner, and some mac and cheese for lunch. Making the transition from pureed to mechanical soft means that Megan is able to chew and swallow safely. We are still waiting to do another swallow test for water. Water has been too thin for Megan, and she is choking on it. The speech therapist wants her to be able to swallow thin liquids like water so she can have other drinks that she actually enjoys. They are hoping to do the swallow evaluation for water sometime today (5/31). Yesterday they took out the nose tube out that was feeding her on a constant basis. This was nice for Megan because it was beginning to become uncomfortable. Once the tube came out she looked even more like our Megan! They also took the catheter out sometime in the morning. This allowed for easier movement.

Later in the day they moved Megan out of ICU and onto the regular Neurology floor. This is great progress because it means he swelling risk has passed.  She is speaking more. She is saying more words and short phrases, but still has trouble. It seems like she knows what she wants to say, but cannot make the connection in her brain. Hopefully in time that will come back. They are still working with her in PT to get her walking again. Her right foot sort of curls under her when she walks, but she has to be told to keep it flat and watch her foot to remember the right form. She has improved each day with her walking, and will be drilled very hard in rehab. The right arm is still not moving much at all. She has a little bit more feeling in it, but still no movement.

Today (5/31) they took Megan for a Transesophageal Echocardiogram. They wanted to take a closer look at her heart to see if there are an abnormalities. The initial results came back negative, and according to Megan, "we are normal!" She was brought back to her room and had some breakfast. The speech therapist came in to test if she could have thin liquid (water). They have moved her off of the nectar thick liquid completely, but she must have the nectar when she is eating. Megan is now allowed to have whatever drink she wants with small sips. Her first drink of choice is a strawberry Coolatta! She was pretty excited for that. We are hearing more phrases come out of her mouth as the day goes on. She continues to put a couple strings of words together. It is still frustrating because she knows what she wants to say, but cannot get the correct words out. We are sort of playing charades, and sometimes Megan doesn't have much patience. We are hoping to get Megan into rehab tomorrow. She has the all clear, but we are just waiting for a bed for her at Spaulding Rehab Boston. More to come tomorrow!