Sunday, August 9, 2009
Thursday, August 6, 2009
update
This week Jackson had an appointment with his neurosurgeon in Grand Rapids. Jackson's shunt is working great, but his head still continues to grow. At first the neurosurgeon was a little worried about the continued growth until I informed him that kids with M-CM continue to have head growth despite the shunt placement. I gave the doctor an article all about the neuro findings of M-CM and the doctor looked up at me and said, "Wow, you are really informed about Jackson's syndrome!" I have found that since it is such a rare syndrome it is necessary for Eric and me to be the expert on it and inform the doctors what we think needs to be done. We now request what test we think need to be done and the doctors usually follow our advice. We are meeting more families on-line who have kids with M-CM and are learning lots of helpful information and it is also so great to be able to connect with someone who completely understands what we are going through.
Jackson is now starting to coo alot more. He use to just coo occassionally and sometimes it would be a full week without hearing anything from him except a cry. Now daily he will coo and squeal for us. It is so great to hear him make some noise and Annika gets really excited when he starts to squeal at her. Jackson is also now sucking on his toes and can usually be found with his feet up by his head. We are always thrilled with every new thing that he does.
Finally, I just wanted to say that one of the hardest things to deal with is people starring at Jackson when we go out. I do understand that he looks different and sometimes I think that at one time I probably did the same thing. I really do not mind if someone looks at Jackson as long as they also will smile at him or say "hi" to him. So often we get the stare with just the puzzled or questioning look and that is harder for me to take. So if you ever see someone with special needs or someone who looks a little different and you find yourself looking at them just make sure to remember to smile at them also-it makes a huge difference.
Jackson is now starting to coo alot more. He use to just coo occassionally and sometimes it would be a full week without hearing anything from him except a cry. Now daily he will coo and squeal for us. It is so great to hear him make some noise and Annika gets really excited when he starts to squeal at her. Jackson is also now sucking on his toes and can usually be found with his feet up by his head. We are always thrilled with every new thing that he does.
Finally, I just wanted to say that one of the hardest things to deal with is people starring at Jackson when we go out. I do understand that he looks different and sometimes I think that at one time I probably did the same thing. I really do not mind if someone looks at Jackson as long as they also will smile at him or say "hi" to him. So often we get the stare with just the puzzled or questioning look and that is harder for me to take. So if you ever see someone with special needs or someone who looks a little different and you find yourself looking at them just make sure to remember to smile at them also-it makes a huge difference.
Subscribe to:
Posts (Atom)