Sorry for such a long delay in posting, but we have had a long stretch with very few doctor appointments. It has been so nice to take a break and just enjoy the summer without being on the go all the time.
This past week we went to see the developmental pediatrician in Grand Rapids. She basically told me what I already knew- that developmentally Jackson is way behind. Even though this is something that we know and fully accept, it is still hard to hear the expert confirm it. She also has never had a patient with M-CM and so she really does not know what to expect with Jackson's development. She instructed us to start to look into assistive technology. She would like Jackson to start to use a language board called a Big Mac. This is basically a board with large buttons on it (like the easy button) that he can learn to push to start to teach him to communicate with us. She did not feel that Jackson would do very well with sign language because it is a fine motor skill that she did not think he would be able to master. She also wants us to start to look into a motorized wheelchair. She said that she has had patients as young as nine months start using a motorized wheelchair to teach them independance. This is not saying that he will not eventually be able to walk or talk. Both of these are so that he can learn to do things on his own without relying on us to always pick him up and to make him more independant. We will eventually have a consult at MaryFree Bed to see exactly what Jackson will need and what will work for him.
Finally, Jackson has also started speech therapy. Right now we are basically working on trying to give him better musle tone around his mouth, imitating sounds, and working on feedings. We love all of our therapist which is a good thing since we see them so often. Even though it can be difficult at times to have a special needs child we feel so blessed to have Jackson and Annika . God gives us strength for each day and he has blessed us greatly!
