Making snow angels
Jackson had his own little shovel and helped us shovel the driveway!
Showing posts with label Jackson. Show all posts
Showing posts with label Jackson. Show all posts
Tuesday, March 15, 2011
Snow on spring break
Jackson is on spring break this week from school. The first day we got about 4 inches of snow. What a way to start off his break. Hoping for nicer weather the rest of the week. But I thought I would share some pictures of the boys playing in the snow this past month. We had some great snowfalls and the boys loved playing outside. We didn't get out as much as they would of liked because of my health and Jackson's temp issues. But we had a lot of fun!
Thursday, March 10, 2011
Jackson's new chair
Yesterday we went and picked up Jackson's convaid cruiser. Which is a adaptive stroller/wheelchair. Jackson immediately got in and said he loved it!! It looks so comfy and I know its going to be such a big help. It's been a big process in getting it so its a huge relief to have it now. A little over a year ago we started looking into getting one of these for Jackson. We knew there was a process and would take some time to get. At the time Jackson was 3.5 years old and was having a lot problems walking and fatigue. With the way he was growing we need we didn't have much longer in any regular strollers. We talked to his doctors and they all agreed he would need one. We first got the referral to see the right physical therapist. She wanted to have several visits with him to see what his needs,strengths and weaknesses where. After a few months of seeing her she sent her recommendation to the seating clinic and we got an appointment there. That was a couple months wait. During that appointment we went over everything and the different options there where. Jackson got to pick out the color of his chair and out of the 5 colors he picked blue. Jackson has 2 different insurance companies so we submitted to the primary first and they completely denied it(this is very typical, I've even heard of children that can't walk at all being denied wheelchairs, its sad). After waiting for them to say it was denied we then submitted to secondary. We heard back from them and they approved it but we had to a good amount of out of pocket expense. After the insurance came through and we paid our portion they where able to order the parts and have it made. After a year of requesting his chair they called on monday to say it was in and we could pick it up this week. I was thrilled!
For those wondering why Jackson needs a wheelchair I'll explain a little. Jackson has low muscle tone and its much harder for him to do things requiring his muscles. He also has a lot of fatigue and very quickly wears out. He can walk and some days more then others. On days he's weaker he can't walk farther 20 yards before falling and needing to be carried. He also has other issues like a lot of pain and other various medical problems that having the chair can help. Now at almost 5 there is no way he can fit in a regular stroller at all and wouldn't support him very well in areas where is muscle tone is affected more. Since he has a mitochondrial disease,which is a progressive disease, he will continue to have problems with increasing fatigue and muscle weakness. As he gets older he maybe able to walk more but his tone and fatigue will not improve and most likely get worse. This chair has a lot of growth room in it and hoping it will last him about 5 years. That will be about when he's 8 or 9 that we would have to start looking where he's at then and seeing if he will need a bigger one or not.
This chair will be such a great help to us and him. Since he can't walk very far he gets carried a lot. He's a solid built boy weighing in at 48 lbs. Thats a lot to be carrying around every where. Also when we go anywhere like stores and such he has to be in the cart. Its difficult for him because its very uncomfortable for him and does not support him at all. He's really big to riding in the grocery cart. Plus its hard for me to lift him in and out of it. Then with 2 kids in the cart there's no room for groceries and such. Jackson will be able to do a lot more, go a lot more places, and will be a lot better with less fatigue and pain. He'll also be able to take this to school and hopefully he'll do better and last longer at school. He'll feel a lot better being in something that is supportive of him properly.
I only have one concern now that we have this. Any time we go out Jackson will need to be in his chair. I'll have to other children as well. The new baby I'll most likely carry in a wrap, sling or baby carrier. Then I'll have Noah who's 2, very active, and likes to run around. I'm not sure what to do with him. I fear if he's walking next to us that he'll run off and I'll have a hard time catching him running with a baby and pushing a wheelchair. As he gets older this won't be as much of an issue because he'll understand more. But at 2 I can't expect him to never walk off. Hopefully we'll figure out something.
Jackson's chair from the side with his tray on.
Jackson in his chair with the shade on it
For those wondering why Jackson needs a wheelchair I'll explain a little. Jackson has low muscle tone and its much harder for him to do things requiring his muscles. He also has a lot of fatigue and very quickly wears out. He can walk and some days more then others. On days he's weaker he can't walk farther 20 yards before falling and needing to be carried. He also has other issues like a lot of pain and other various medical problems that having the chair can help. Now at almost 5 there is no way he can fit in a regular stroller at all and wouldn't support him very well in areas where is muscle tone is affected more. Since he has a mitochondrial disease,which is a progressive disease, he will continue to have problems with increasing fatigue and muscle weakness. As he gets older he maybe able to walk more but his tone and fatigue will not improve and most likely get worse. This chair has a lot of growth room in it and hoping it will last him about 5 years. That will be about when he's 8 or 9 that we would have to start looking where he's at then and seeing if he will need a bigger one or not.
This chair will be such a great help to us and him. Since he can't walk very far he gets carried a lot. He's a solid built boy weighing in at 48 lbs. Thats a lot to be carrying around every where. Also when we go anywhere like stores and such he has to be in the cart. Its difficult for him because its very uncomfortable for him and does not support him at all. He's really big to riding in the grocery cart. Plus its hard for me to lift him in and out of it. Then with 2 kids in the cart there's no room for groceries and such. Jackson will be able to do a lot more, go a lot more places, and will be a lot better with less fatigue and pain. He'll also be able to take this to school and hopefully he'll do better and last longer at school. He'll feel a lot better being in something that is supportive of him properly.
I only have one concern now that we have this. Any time we go out Jackson will need to be in his chair. I'll have to other children as well. The new baby I'll most likely carry in a wrap, sling or baby carrier. Then I'll have Noah who's 2, very active, and likes to run around. I'm not sure what to do with him. I fear if he's walking next to us that he'll run off and I'll have a hard time catching him running with a baby and pushing a wheelchair. As he gets older this won't be as much of an issue because he'll understand more. But at 2 I can't expect him to never walk off. Hopefully we'll figure out something.
Jackson's chair from the side with his tray on.
Jackson in his chair with the shade on it
Monday, November 22, 2010
Mito
Jackson's been having a lot of health issues lately and we've been seeing some new doctors as well. I wanted to update family and friends on how he's doing but it's difficult when most don't understand whats going on. Also some people have been asking questions about what exactly is going on with Jackson and why things are the way they are, so I wanted to explain a little bit about what it is Jackson is dealing with.
Ever since Jackson was born he's had a variety of symptoms, seen countless doctors, had lots of tests and procedures. His current main diagnosis is mitochondrial disease. Mito is a difficult thing to diagnose and, for many people, requires many tests over long period of time to find out for certain if they have it. A lot of doctors say that it's "as clear as mud" in trying to figure things out. For Jackson we are still in the process of finding the exact cause, so he has a "clinical" mito diagnosis. We haven't found the exact genetic mutation, but the doctors feel Jackson meets the clinical picture, and many tests point to mito being what he has. Because of the nature of this disease we are treating him as if we know for sure he has it.
I wanted to explain a little bit about what mitochondrial disease is.
What is Mitochondrial Disease
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection
Prognosis
As more research dollars are raised to find more effective treatments and ultimately a cure, some of the affected children and adults are living fairly normal lives with mitochondrial disease. At the opposite end of the spectrum, many are severely affected, and some children do not live past their teenage years.
When are they at greatest risk?
The child or adult is at risk for neurological or organ damage during and for the two weeks following an illness. Therefore even a simple flu or cold virus can have devastating effects on the patient, even death. Any illness must be treated immediately with medical interventions, like IV fluids and IV antibiotics.
You can find out more about mito on the website umdf.org
There is no cure for mitochondrial disease. The only treatments are treating symptoms that can be managed and taking the "mito cocktail". The cocktail is group of supplements that help the body improve function and may slow the progression of the disease. Jackson has recently started taking some of the supplements and we've some great improvements.
Some of the symptoms that Jackson deals with that are common in mito:
Developmental delays, autistic features, dysautonomia(temperature,blood pressure and blood sugars mostly), seizures, Weakness, cramping, dysmotility, hypotonia, muscle pain, diarrhea/constipation, fatigue, cyclic vomiting syndrome and other various symptoms.
Jackson is getting a stroller/wheelchair very soon. This is very common for children that have mito. It's mostly because of how quickly he fatigues and gets weak. Its also for his pain. Jackson's fatigue varies day to day. Some days he's able to walk and play then there's days that he needs help walking more then 10 yards. The stroller will allow him to do more on the days he's to weak to walk and also on the days that aren't too bad preserve his energy for more important things.
Ever since Jackson was born he's had a variety of symptoms, seen countless doctors, had lots of tests and procedures. His current main diagnosis is mitochondrial disease. Mito is a difficult thing to diagnose and, for many people, requires many tests over long period of time to find out for certain if they have it. A lot of doctors say that it's "as clear as mud" in trying to figure things out. For Jackson we are still in the process of finding the exact cause, so he has a "clinical" mito diagnosis. We haven't found the exact genetic mutation, but the doctors feel Jackson meets the clinical picture, and many tests point to mito being what he has. Because of the nature of this disease we are treating him as if we know for sure he has it.
I wanted to explain a little bit about what mitochondrial disease is.
What is Mitochondrial Disease
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection
Prognosis
As more research dollars are raised to find more effective treatments and ultimately a cure, some of the affected children and adults are living fairly normal lives with mitochondrial disease. At the opposite end of the spectrum, many are severely affected, and some children do not live past their teenage years.
When are they at greatest risk?
The child or adult is at risk for neurological or organ damage during and for the two weeks following an illness. Therefore even a simple flu or cold virus can have devastating effects on the patient, even death. Any illness must be treated immediately with medical interventions, like IV fluids and IV antibiotics.
You can find out more about mito on the website umdf.org
There is no cure for mitochondrial disease. The only treatments are treating symptoms that can be managed and taking the "mito cocktail". The cocktail is group of supplements that help the body improve function and may slow the progression of the disease. Jackson has recently started taking some of the supplements and we've some great improvements.
Some of the symptoms that Jackson deals with that are common in mito:
Developmental delays, autistic features, dysautonomia(temperature,blood pressure and blood sugars mostly), seizures, Weakness, cramping, dysmotility, hypotonia, muscle pain, diarrhea/constipation, fatigue, cyclic vomiting syndrome and other various symptoms.
Jackson is getting a stroller/wheelchair very soon. This is very common for children that have mito. It's mostly because of how quickly he fatigues and gets weak. Its also for his pain. Jackson's fatigue varies day to day. Some days he's able to walk and play then there's days that he needs help walking more then 10 yards. The stroller will allow him to do more on the days he's to weak to walk and also on the days that aren't too bad preserve his energy for more important things.
Monday, September 27, 2010
Bittersweet
I knew this day would come I just didn't expect it to be this soon.
After Jackson was born he immediately had some problems from the beginning. His entire first year there was so much going on. In and out of the hospital we didn't really know where things where going. After he turned one and closer to 2 we knew that his life would be different and he was not simply going to "grow out of" the things he was going through. I knew that having another child would be difficult but I felt very strongly that Jackson needed a sibling. He needed that relationship. He needed someone to be there for him in ways that I wouldn't be able to. That was one of the many reasons why we had Noah. Ever since Noah was born I've felt a very different relationship with him compared to Jackson. Noah and adores his big brother. Wants to do everything his big brother does. Jackson loves his little brother. (most of the time,except when he's stealing trains). They have a very special bond and its very clear to see it. I knew there would come a day that Noah would pass Jackson up and in a way become the big brother. I figured it would be a few more years and Noah would cognitively pass him. But in a way in happened today. This afternoon we went for a short walk up the street. We don't go for walks very often because Jackson fatigues so quickly he can't walk very far before needing to be carried. Between the 2 of them I can't carry both of them. Today they both where running around outside enjoying the fall crisp air we decided to walk for a little bit. Jackson running as fast as his tall 4 year legs would carry him and Noah running as fast as his little 20 month legs would carry him we all ran up the street. Most of the way of the street the where side by side, giggling the entire way up. Best friends. But as we got closer to the top Noah was still going and Jackson was slowing. I could see the pain and frustration in Jackson's eyes. His little body failing him. How desperately he wanted to run more, to get to the top of the hill, to be with his best friend. But he couldn't. His body giving out and not allowing him what his little heart longed for. Within seconds of passing Jackson Noah realized he was passed his brother and turned towards him. He slowed down and waited for his brother. For the last few feet to top of the hill the walked together. Jackson collapsing at the top and crying to be carried home. Noah wanting to run and play more. It had happened. At 20 months old Noah can do more then his brother physically, can fun faster, can go farther. At 4 Jackson realized this today. It hurt him. But his brother was there. He waited for him and they where best friends walking to the end. Just how imagined it when Noah was born. It was bittersweet to see Noah running faster then his little legs could carry him but also passing his brother was heart wrenching. I know there will come more and more times where Noah will pass Jackson. This will be the first of many. I just hope and pray that they will be always be there for each other like they where today. Finishing hand in hand as a best friends.
After Jackson was born he immediately had some problems from the beginning. His entire first year there was so much going on. In and out of the hospital we didn't really know where things where going. After he turned one and closer to 2 we knew that his life would be different and he was not simply going to "grow out of" the things he was going through. I knew that having another child would be difficult but I felt very strongly that Jackson needed a sibling. He needed that relationship. He needed someone to be there for him in ways that I wouldn't be able to. That was one of the many reasons why we had Noah. Ever since Noah was born I've felt a very different relationship with him compared to Jackson. Noah and adores his big brother. Wants to do everything his big brother does. Jackson loves his little brother. (most of the time,except when he's stealing trains). They have a very special bond and its very clear to see it. I knew there would come a day that Noah would pass Jackson up and in a way become the big brother. I figured it would be a few more years and Noah would cognitively pass him. But in a way in happened today. This afternoon we went for a short walk up the street. We don't go for walks very often because Jackson fatigues so quickly he can't walk very far before needing to be carried. Between the 2 of them I can't carry both of them. Today they both where running around outside enjoying the fall crisp air we decided to walk for a little bit. Jackson running as fast as his tall 4 year legs would carry him and Noah running as fast as his little 20 month legs would carry him we all ran up the street. Most of the way of the street the where side by side, giggling the entire way up. Best friends. But as we got closer to the top Noah was still going and Jackson was slowing. I could see the pain and frustration in Jackson's eyes. His little body failing him. How desperately he wanted to run more, to get to the top of the hill, to be with his best friend. But he couldn't. His body giving out and not allowing him what his little heart longed for. Within seconds of passing Jackson Noah realized he was passed his brother and turned towards him. He slowed down and waited for his brother. For the last few feet to top of the hill the walked together. Jackson collapsing at the top and crying to be carried home. Noah wanting to run and play more. It had happened. At 20 months old Noah can do more then his brother physically, can fun faster, can go farther. At 4 Jackson realized this today. It hurt him. But his brother was there. He waited for him and they where best friends walking to the end. Just how imagined it when Noah was born. It was bittersweet to see Noah running faster then his little legs could carry him but also passing his brother was heart wrenching. I know there will come more and more times where Noah will pass Jackson. This will be the first of many. I just hope and pray that they will be always be there for each other like they where today. Finishing hand in hand as a best friends.
Thursday, July 29, 2010
Jackson in a cycle
It started again today. "That look" Jackson has, has taken over and stolen everything that I know to be my little boy. The light in his eyes his gone. This vicious cycle has started. Jackson stopped eating. He's regressing. Loosing skills he fought so hard for. My little boy is not my little boy. He's confused and no longer able to communicate. Its hard to describe watching him in these days. He's too weak to do anything. Words he's able to make are stuttered. Its like I'm at the top of the mountain with him. He stumbles and starts to slide. I reach for his hand to hold on. Day by day we loose our grip and he slips more and more out of my hand. I feel him slipping and there's nothing I can do to hold onto him. I know whats coming. Then I hear it. The awful whimper before it all gets worse. His face goes pale, his jaw trembling, the trickle down his chin. The vomiting takes over. His body now limp as I carry him to the couch. I make a bed for him surrounded by towels, buckets and monkey. The vomiting continues. Soon, he is too weak to even hold himself up. I hold him on his side to let it run from his mouth. His body now trembling and his temperature dropping. I check to see where he's at and just like that his temperature is 92. I hold him close to me to warm him up. Knowing more vomiting is soon to come and I have to get his temperature up before it does. There is nothing I can do but keep is body stable while whatever it is takes over. All I can do now is rock him, hold him, sing to him and pray that soon I will see the light in his eyes again. The tears run down my face and all I want to do is rip my heart out so I don't have to feel it ache anymore. The vomiting continues over and over again. He's to the point of only retching. His body shaking uncontrollably. The pain is almost too much for him to take. Then again he goes limp. He is able to have some relief from the pain and sleep. This is the way it will be for days. He will sleep and throw up. There will be moments in there he will be awake and trying to talk. Just to remind me he is gone. It is still not my Jackson. He will talk but not make any sense. Sometimes a little glimmer of hope as meaningful words come out. "mommy, snuggle me closer" I hold him closer. The tears sting my eyes yet again. Somewhere deep inside is my bright eyed little boy struggling to come back to me. I stare at his face trying to memorize every little freckle. I wonder where he goes and how much he is aware of whats happening to him. Praying he's not in a lot of pain. The petechiae(tiny bruises from his bleeding issues) have come and will soon out number the freckles on his face. The vomiting has stopped now. He is finally able to really sleep. Hours later he wakes up and slowly opens his eyes to look for me. I see him. Its my Jackson! He's come back to me. Whatever took over his body is now gone. The animation in my son has returned. Happy tears that he's returned from the dark place. But then we wait. Wait to see what all he lost. This time its motor skills. He can longer walk up and down stairs. He has to relearn. Rebuild all those muscles. He is 4 and relearning to go up stairs. This cycle lasted 6 weeks. His longest yet. He missed most of the summer. We had so many plans to head to the pool, the park, the zoo. Instead we spent days and days on the couch. Now that the cycle is over emotions try to take over. I'm overjoyed that I look at my son and he is there. The light in his beautiful eyes shines at me. He whispers sweet "I love yous". Underneath I'm still sad at what we missed. At what he missed. I try to focus on the moment. Making the most of the next few weeks of summer. Playing with the boys as much as possible. Making myself not worry about when the next cycle will start and cherish the good times we have. For now life is good!
The pictures go through the start of a cycle to when the vomiting starts. These cycles Jackson has had ever since birth. Sometimes we have months in between sometimes only days. Some are worse then others and include different symptoms. A lot of the times they include seizures too. This last one he no seizures but was his longest one.
The pictures go through the start of a cycle to when the vomiting starts. These cycles Jackson has had ever since birth. Sometimes we have months in between sometimes only days. Some are worse then others and include different symptoms. A lot of the times they include seizures too. This last one he no seizures but was his longest one.
Monday, July 26, 2010
First Post
Picture taken of Jackson and Noah driving the fire truck on the playgroundSo after deciding on starting this blog I couldn't decide on what to do as my first post. I kept thinking about the different topics that I would post about or describing myself but what it came down to is being a mother. That's why I started this blog. I have found my greatest joy in being a mother. I've grown and changed over the past 4 years and learned so many new things. My children are my joy and make me want to be a better mother for them. This will be about my family with updates on my kids, things I've learned, and things that have helped me be the mother I am. Topics may include, of course, my kids, natural family living, breastfeeding, c0 sleeping, gentle parenting, babywearing, and anything about homemaking. I will also be updating about health concerns of my boys and navigating our way through special needs parenting.
To start off I will tell you about my boys. Jackson is 4 years old. His greatest love is for trains! He is the sweetest funniest little boy who keeps us laughing about all the random fun things he comes up with. He deals with many health concerns daily. Noah is 17 months and adores is big brother. He loves to chase him around. Nothing else matters if Jackson is around to play with. He also has a love for any balls. Any time he's playing he usually has a ball in his hand. I'll update more about them more specifically later.
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