Emma seems to be in more and more pain these days. She has recently been fussy, well, always. We're not sure if it is abdominal pain or something else, but we must hold her all waking hours to ease her crying. Even then it doesn't always work. Some days are better. She has also began locking her whole body stiff as a board. It is hard to tell if this is its own action, or whether it is muscle cramps or a reaction to abdominal pain. Either way, the poor thing just locks up with an arched back, stiff legs and over extended feet and cries. We can gently get her back into a ball and she will stop crying and usually go to sleep.
Eating and drinking are becoming more challenging by the day. She has lost the swallowing function and just does a repetitive tongue thrust to get food down. Drinking is less graceful so we use a drink thickener to help her out. Thankfully she is keeping weight on pretty good and now feels like a ton of lead compared to Cora!
Em has also started a shaking in her legs, called "clonus" that resembles shivering from being cold, although she is not. It is just a symptom of another area of the brain being effected.
On a positive note, to commemorate the arrival of baby Cora, Emma's Hugs gave out 100 days of pre-paid parking at MD Anderson Cancer Center on Saturday. That brings our total to over 300 days of parking...and we're just getting started!
To close, check out this beautiful girl in her school picture!
Anyone can run a marathon, but to inspire someone else to run the race is a greater accomplishment. Emma has made many accomplishments!
Kelvin
