More appointments

This week we continued to add miles onto our car. I never realized before how exhausting it can be to travel with two kids to so many doctors appointments. It is both physically and emotionally wearing. Yet at the same time I would travel anywhere if I know that it will benefit Jackson. First on Monday I drove Jackson to Indiana University where we met with a geneticist. She basically confirmed Jackson's diagnosis of M-CM and ordered a few more tests. Jackson is now going to have an ECHO to check his heart. Some of the kids with this syndrome have heart abnormalities and she just wanted to have a baseline of what his heart looks like. She also ordered an abdominal ultrasound which will be done every three months until Jackson turns 5 years old. This is done to check for a Wilms tumor (which is a tumor in the kidneys). There are very few kids with M-CM who have been found to have a Wilms tumor but better to be safe than sorry. This tumor almost always develops before the age of five. Then today I traveled to DeVos Children's Hospital to have Jackson measured for a special seat so that he can sit up and look around. Jackson still is not able to lift his head due to its large size and low muscle tone. Therefore this seat will allow him to sit up and help to strengthen his neck muscles and make him more aware of what is around him. Finally a note of praise that Jackson's shunt is still working great and he has not developed any infection. Thank you for all of your thoughts and prayers and cards!