Well, it has been awhile since I have posted anything, so I thought I'd better get you all up to date! Not that there has been a lot you have missed, but some of you would want to know how we have been doing! I will try to keep this up better so that you all know what is going on at least week be week!
The reason I haven't written this earlier is really because of Jaxon. He has had a tough couple of weeks, and I haven't had any energy to do anything. Easter week and weekend were the worst he has been in a long time! He stayed home from school on Thursday, and hardly moved a muscle all day! I had to help him change positions every few minutes cause he would get uncomfortable, but couldn't move himself. He was like that all night Wed./Thurs. morning, and it lasted until about 3pm Thrusday. He did want to go to church that night with his wheel chair, so that was good! We had a nice dinner at church, then our service, and dessert at the end. After the service he really started to get bad again, you could see it all over his face! We, meaning Jax and I, hardly slept that night either, he had a high fever(which is part of his JRA) and was really hurting and uncomfortable again. He has been having weekends like this now for over a month. It seems like he can try to make it through the school week, but then has no energy for the weekend!
He did have a better week this week, which was relieving! He was sore and stiff most mornings but wanted to go to school! He has been having Phys. Ed outside this week, playing baseball, so that was a good motivator. Sometimes he needs things like that to get him going, otherwise it is just too hard! He also had another change this week, we talked to his Dr. about the frequent pain that he has been having, and they decided to up his Kineret shot. He was only getting half of an adult dose, so we just added a little to that. He doesn't have to get two shots, we just don't have to waste so much of the shot! We usually squirt out half of the liquid to get him the right amount, now it's just a little! We are hoping that this will help his pain so that we can stay down where we are at on his steroids. He has been down pretty far on those now for about a month, so we are hoping that he can start growing!
He had a rough night last night again, he tossed and turned, needed help getting to the bathroom, and just moaned and groaned all night! He woke up needing dad to carry him out to the couch where he was until he could take a nap! He did come outside, in his wheelchair for little bit, while we cleaned and organized our garage! We will see how he is feeling after his snooze here, sometimes that helps!
Otherwise there isn't that much else going on around here. That is enough though, it seems, cause Jeremy and I seem to always be tired! It is hard to have the roller coaster feeling with Jaxon everyday, never knowing what the next day will bring! We have to remind each other, and Jaxon, that we can't handle it all by ourselves, but need to lean on Him. Otherwise we would never be able to make it through these kind of weeks! God is always there, even when it seems impossible! We can see it often in the way Jaxon reacts to these hard days, he really never complains and usually has a smile on his face, which can only be God! I know that if I was in the amount of pain Jaxon is in, it would be really hard for me to have a good attitude! I really believe that we see God giving Jaxon and us extra grace, and strength, even in these hard times!
One good piece of information for you though, is that we are getting our driveway poured this Tuesday!! I am so excited! It has been fine without it, but annoying at the same time! We can't get into our garage, with the cars, so if Jaxon has a hard day we have to carry him up our bridge (as the boys call it). It will be so nice when we can just drive in so he can get out and into the house without walking very far!
So that's the low down, and I will try to get better at posting more often so that you don't have to read a book all at once!
The reason I haven't written this earlier is really because of Jaxon. He has had a tough couple of weeks, and I haven't had any energy to do anything. Easter week and weekend were the worst he has been in a long time! He stayed home from school on Thursday, and hardly moved a muscle all day! I had to help him change positions every few minutes cause he would get uncomfortable, but couldn't move himself. He was like that all night Wed./Thurs. morning, and it lasted until about 3pm Thrusday. He did want to go to church that night with his wheel chair, so that was good! We had a nice dinner at church, then our service, and dessert at the end. After the service he really started to get bad again, you could see it all over his face! We, meaning Jax and I, hardly slept that night either, he had a high fever(which is part of his JRA) and was really hurting and uncomfortable again. He has been having weekends like this now for over a month. It seems like he can try to make it through the school week, but then has no energy for the weekend!
He did have a better week this week, which was relieving! He was sore and stiff most mornings but wanted to go to school! He has been having Phys. Ed outside this week, playing baseball, so that was a good motivator. Sometimes he needs things like that to get him going, otherwise it is just too hard! He also had another change this week, we talked to his Dr. about the frequent pain that he has been having, and they decided to up his Kineret shot. He was only getting half of an adult dose, so we just added a little to that. He doesn't have to get two shots, we just don't have to waste so much of the shot! We usually squirt out half of the liquid to get him the right amount, now it's just a little! We are hoping that this will help his pain so that we can stay down where we are at on his steroids. He has been down pretty far on those now for about a month, so we are hoping that he can start growing!
He had a rough night last night again, he tossed and turned, needed help getting to the bathroom, and just moaned and groaned all night! He woke up needing dad to carry him out to the couch where he was until he could take a nap! He did come outside, in his wheelchair for little bit, while we cleaned and organized our garage! We will see how he is feeling after his snooze here, sometimes that helps!
Otherwise there isn't that much else going on around here. That is enough though, it seems, cause Jeremy and I seem to always be tired! It is hard to have the roller coaster feeling with Jaxon everyday, never knowing what the next day will bring! We have to remind each other, and Jaxon, that we can't handle it all by ourselves, but need to lean on Him. Otherwise we would never be able to make it through these kind of weeks! God is always there, even when it seems impossible! We can see it often in the way Jaxon reacts to these hard days, he really never complains and usually has a smile on his face, which can only be God! I know that if I was in the amount of pain Jaxon is in, it would be really hard for me to have a good attitude! I really believe that we see God giving Jaxon and us extra grace, and strength, even in these hard times!
One good piece of information for you though, is that we are getting our driveway poured this Tuesday!! I am so excited! It has been fine without it, but annoying at the same time! We can't get into our garage, with the cars, so if Jaxon has a hard day we have to carry him up our bridge (as the boys call it). It will be so nice when we can just drive in so he can get out and into the house without walking very far!
So that's the low down, and I will try to get better at posting more often so that you don't have to read a book all at once!
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