This past Tuesday was such a long day! Jackson had an MRI at 8 AM at DeVos Children's Hospital. Tests for Jackson are getting to be harder and harder because he has developed a huge fear of anyone wearing a lab coat or in uniform. He also freaks out anytime anyone lays him on the paper covered examining tables. I felt so sorry for him when they had to put an IV in him and when he screamed the entire time they gave him the oral sedation medication. It broke my heart when he would just look at me as if to say "why are you letting them do this to me." Jackson did well during the MRI, but he did wake up once so they had to give him more medication. After he came back from MRI I mention to the nurse that he felt really warm. She said that it was probably just related to the medication and being in the MRI and that he was doing fine. Next, we had to head to the neurosurgeons office for an appointment and get the results of the MRI. However, the neurosurgeon ended up being in surgery so Jackson and I had two hours to wait. We were both so tired and just wanted to go home, but I did not want to make the trek to GR later that week so we just waited. Finally we met with Dr Skarli and he basically told us what I was expecting, but did not want to hear. Jackson's Chiari malformation did not improve with the placement of the shunt. A chiari malformation is in the brain where pressure causes the cerebellar tonsils herniate downwards through the foramen magnum (this probably does not make any sense to most of you). Anyway this can cause serious problems if it gets worse. So sometime in the next few months Jackson will need to have decompression surgery. This surgery consists of removing the necrotic cerebellar tonsils, cleaning out the Dura, and performing a laminectomy (removing the top vertebrae to allow for more space). Obviously this is not something that Eric and I wanted to hear, but we knew that there was a huge possibility that Jackson would need this surgery. Before surgery Jackson is also going to have a MRI of the spine to see if the chiari is causing any fluid pockets (a syrinx) to form in the spine and to check if Jackson has a tethered spinal cord. Therefore if his spinal cord is connected at the bottom they can also take care of this problem and correct it ("clip it") during the surgery.
Finally at almost 4:00 Jackson and I were back on the road to Holland to pick up Annika. I think that I cried almost the entire way. There are times when it is easy to say "this is so unfair" and "how can God be in control of this?" Just recently though I read a devotion that really hit home to me that said "God's not only in control; He's right here beside you weeping with you." God is not just saying "Sherry just deal with this." But he is going through all of this with us, and he is crying with us when we cry. Jackson is not a burden to Eric and I, but our precious gift from God.
Well our day did not end there. When we finally did get home I picked Jackson up out of his car seat and he was so hot. I checked his temp and it was 103 degrees. I immediately gave him tylenol and called his pediatrician who told us to bring him in. I then got to spend the next five hours in the ER where they diagnosed Jackson with pneumonia. Jackson and I finally arrived home at midnight after an exhausting day. Jackson is now doing much better and today is actually acting like his normal happy self. A huge thank you for all of your prayers, they were definitely felt. "Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." Matthew 6:34 (The Message)
Thursday, October 15, 2009
Saturday, October 10, 2009
Therapy
Once again Jackson has decided to surprise us and has started to lift his head on his own. Eric and I were hoping that he would be able to do this by his first birthday and so we are very excited that he has reached this goal. He still can only keep it up for a short time before getting tired, but he has held it for up to two minutes. Jackson is also rolling all over the floor and no longer stays on the blanket that I lay him on. This fall we continue to be very busy with therapy 7 times a week. At home we receive physical therapy, occupational therapy, speech therapy, and teacher services. Then we also go outpatient for physical, occupational, and speech therapy. Some weeks I feel overwhelmed by all of it, but then I see how it has already helped Jackson and know that this is something that we need to continue.
Jackson with his physical therapist Keri
Holding up my head!
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.
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