Saturday, October 3, 2009
Monday, September 21, 2009
Running for a Reason: 13.1 for Jackson DeJong
Over Labor day weekend my sister, Leanne, ran a half marathon in Virginia Beach, VA to raise support and increase awareness of M-CM. Their theme was "Running for a Reason" 13.1 for Jackson DeJong. Leanne and her friend Shannon ran together and finished in under 2 hours!!
Eric and I feel so very blessed and are humbled by so many of you who contributed to this cause. Over $2,800 were raised to support the cause!! This money will go in a fund to support Jackson's ongoing medical costs and necessary developmental equipment. Thank you again to everyone of you that continues to support our family in this journey.
Shannon and Leanne after the race.
Sunday, September 13, 2009
Developmental Pediatrician
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!
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!
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.
Saturday, July 25, 2009
Good News
Over the past few weeks Jackson has had quite a few tests and all of them have come back great! In the beginning of July, Jackson had a CT scan to check his shunt. This test showed that the shunt is functioning the way that it should and that the fluid is draining well. He also has had a swallow study which showed no problems and a ultrasound and lab draws both of which came back saying that there are no tumors. Jackson is slowly making progress with his strength. The physical therapists tell us that they can tell that Jackson is getting stronger and Eric and I can notice it as well. Jackson is eating great and gaining weight and is actually starting to look a little chubby! The doctors appointments are becoming less frequent and life is much more manangeable now. Now onto our next task- getting Annika potty trained!!
Wednesday, July 15, 2009
Vacation
We spent a relaxing fun-filled week at a cottage on Lake Michigan with the De Jong family. Annika had a ton of fun with her cousins and she is still waking up each morning asking to see Graysen and Max. Eric and I also got a much needed rest. Here are some pictures of our week.
The whole family
Annika loves the water and has no fear. Even though the water was freezing Annika and her cousins still played in it.
Annika, Graysen, and Max
Jackson
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