As I sit in Jaxson's room, he is taking a nap and so is his daddy. Both of them need it. I am contemplating a lot of things right now. I am heavy hearted, although not so much for Jaxson even though he's a contributing factor. No, what I am heavy hearted about is the number of pages I see on facebook every day for kids with special needs, rare diseases and cancer. Add to that the number of adults I know who have recently been diagnosed with something and it's overwhelming. I want so badly to help everyone and it's frustrating that I can't because I can barely handle my own kids issues.
It's sad to see the sheer number if pages like that popping up on Facebook. Not because they shouldn't have pages, but because there is a clear problem with the world today. We eat so much processed food and put so many chemicals into our bodies that it's no wonder said bodies are succumbing to disease. It makes me angry and it makes me sad. What did these people, especially the kids and babies, do to deserve such treatment? What could be so horribly bad that nature decided, hey, I'm going to go after that one now? I do not think that anyone deserves to have their body eaten by cancer, or that anyone should have to fight every single day to make sure they get to the next one. There is no rhyme or reason to any of it. It's depressing.
I know we can't go through life terrified of what "could" happen, no one should go through life scared. But that doesn't make it easier to handle or watch. I don't know, my head is so jumbled today. We should get to go home tonight, but I'll be back on Monday to get Jax fitted for a new ear mold since we lost one. He hasn't had his hearing aids in well over a month, so I definitely don't want to miss it. We get a break on Tuesday, but then we're back Wednesday, Thursday, and Friday for appointments. I also have to call Dr. Pearson to see if he still wants to do the cleft surgery on the third even though Jaxson's head is done. And I'll need to follow up with Dr. Grondin in the Chiari malformation, I'm sure he'll want to see Jax again soon. And I still need to make the orthopedic appointment now that the referral is in. Plus I have to call the pediatrician for a referral to the eye clinic and possibly GI.
There's so much to keep track of with this kid, I have no idea how we've been able to keep up. And every time we think we might be nearing the end of the madness, something else pops up. This poor kid has had six surgeries and has at a minimum one more. He may still need surgery for his Chiari and tethered cord. And I have no idea what nephrology is going to tell us about his kidneys. I am not complaining, though, because some parents never get this opportunity. Their babies don't make it out of the hospital or they're given a hard time by the doctors or whatever the case may be. Jaxson is at one of the top children's hospitals in the country, and I am physically able to take him to his appointments and make sure his needs are met. Again, not every parent gets that opportunity.
So I guess what I'm feeling is humble. And thankful. Thankful that I have my child here with me, that he's in no immediate danger of leaving us, and that I am able to meet his needs as they arise. Humbled by the thought of not being able to do those things. As a parent, the ultimate goal is to teach your child from your own experiences and ready them for life on their own. I plan on doing just that with both of my boys, but in the process I am learning more than I am teaching. From both kids. If people would open their eyes and see what these situations have to offer, the world would be a better place.
I suppose I she find something productive to do with my time instead of wallowing in a place I don't need to be. Step number one in caring for your children (or any loved one, for that matter) is to take care of yourself. I forgot to end my blog the other day with our quote, but not today :)
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Saturday, January 18, 2014
Thursday, January 16, 2014
Moving, Christmas and Kids
It's been some time since I have been able to write a blog. We haven't had Internet in a month, so I've just been getting on at the hospital. Jaxson has missed some appointments because of being sick, so even those times are few and far between. So here's what has gone on the last month:
We moved into a new place three days before Christmas. We signed the lease the week before and still didn't have get until the day before Christmas. It was turned on via emergency because the landlord hadn't paid the most recent bill. We were told that if it wasn't paid, the city would vacate the premises. So we held off on unpacking, except for making sure we had room for our tree and the boys gifts. Even with the water turned on, we still didn't have hot water. There was a flag on the water tank saying a part needed replaced before it could be lit. So I took the boys to my parents house so they and I could bathe, and Jayson and Michael went to his moms house to do the same. Obviously this couldn't happen every day, so we took sponge baths in between. For two weeks we didn't have hot water, which we finally have now. The landlord waited until the last possible second to pay the bill, but it was paid and they have been much better since then.
The house is a fixer-upper, which we knew when we signed the lease, so Jayson has been working on patching holes and painting. The windows are extremely drafty, so we've spent a couple of nights with everyone sleeping in the living room and the rest of the house closed off to conserve heat. The best part was when AEP shut us off. Wen we transferred service, apparently we had to pay a new deposit, which no one communicated to us. I spoke with a supervisor who was nice enough to put that on our first bill, which they normally do not do. But they said that the landlord had to do some sort of identification saying that we lived there, so we had another night in the living room. This time with candles and lots of blankets! Luckily it was turned back on the next day, so we didn't have to worry about staying somewhere else.
Christmas was absolutely amazing. We received so much help that the boys had plenty to open in the morning! We were so grateful, and I cried over it because without that help, these two would have had practically nothing. Thank you to everyone who pitched in!
New Year's was just another night/day for us. We actually stayed up until midnight (not the kids)!
Since then, Jayson got a new job at Olive Garden and has been working in the evenings. We have to transport the kids to school until they get the bus switched over, but they are now in the mornings instead of the afternoon, which I like. Both boys are cranky in the morning lol! So we've basically been trying to slowly get the house in order and make it home.
Last week, J and I noticed that there was a spot on Jaxson's left pin anchor that looked like it might be coming through the skin. So we went and saw Dr. Pearson, who said it was okay, just keep an eye out for infections and such. We haven't seen any signs of infection, but either that day or the day after, Jaxson started throwing up. I let it go, thinking he might have a virus, but after nearly a week, I called again. Besides getting sick after almost every feed, he wasn't taking full feeds, had been cranky and not quite himself. In the last few days, we've noticed him getting tired more often. So we are at the hospital for a CT to check for pressure in his skull. He also has two more spots at the back of each pin, and several spots popping up along his incision. I have no idea when we'll get the results of the scan, but I hope it's soon. And I hope it's nothing that has to be handled now. Jaxson is supposed to have his distractors out and his cleft fixed in 2 weeks, so if he needs a shunt before that, I have no idea what it will do to the surgery. It's just so frustrating to watch him go through this!
On top of that, Jeffrey has been more and more clingy and sensitive. He throws at least 3 fits a day and constantly has to be talked to about his attitude. I know he's going through just as much, if not more, than the rest of us, but it's. hard to not get angry. Where did my sweet, smart, independent little boy go? Who is this sensitive monster that's suddenly attached to the hips of his dad and me? But he's so amazingly sweet (still) and most of the time he's a blast to play with. He always wants me to read to him, which I love, and he loves teaching his brother new signs from the Signing Time DVDs. I know he's just acting out because he doesn't understand anything that's going on. Mom and dad are always stressed because of money (or lack there of) and he can't do a lot of the things that we used to do with him because we just can't. He knows his brother isn't feeling well and he doesn't understand why or hat he can do to help.
...
And now for the current update. Jaxson's CT showed that there could be more fluid in his head. They need to do an MRI to determine if a shunt is needed, but he can't have that done until his distractors are removed. Why? Because he has metal in his head. That would be a pretty devastating situation. So he's having his distractors out tomorrow afternoon most likely, and they are going to try and do e MRI right after. Dr. Grondin says that he doesn't think there's pressure because his 4th ventricle would be bowed, but it's not. He said that's why they need the MRI because it will show if there's pressure. I am of the belief that there actually is pressure. If there isn't, Jaxson may have to have an additional surgery to fix his Chiari malformation. If they determine that is the course of action, they will go in and remove some of the bone at the base of his skull to create more space. And now I have no idea when he will get his cleft fixed now. It's one thing after another with this kid. And it's so frustrating to watch. No child should have to worry about serious illnesses or major surgeries. Jaxson is no exception. What did he do to deserve this? Nothing. No kid does anything to deserve being sick. Seeing my baby in pain, and other kids too, is so heart breaking. I just want to scoop them all up and hug them until it's all better.
Those thoughts are always in the back of my head, but in the front of my head is pure amazement and awe. If Jaxson has taught me anything, it's that you can get through any situation and come out stronger. Long as you keep smiling. And just abut every kid who has to go through something like this is the same way. God truly knows which kids are the best to be our teachers. As much as we work with Jaxson to teach him new things and get his development up to where it should be, he teaches us something new every day. He knows what his limitations are and uses what's around him to get by. He's the most resourceful kid I have ever seen! Jeffrey would rather I do something for him than figure it out on his own, same as most kids. We sometimes use Jaxson as a teaching tool for Jeffrey, and when Jaxson gets older we will do the reverse. I couldn't ask for two more amazing children. They are so different, yet so perfect!
So now I'm settling in, Jayson ran down to get us some food and Jaxson is asleep. I'm exhausted. So I'm going to eat when J gets back and then try to catch up on a bunch of stuff for Jaxson's Facebook page and some research.updwtes on his current status will take place on FB tomorrow. I'm not sure when I'll be able to blog again, but hopefully soon.
We moved into a new place three days before Christmas. We signed the lease the week before and still didn't have get until the day before Christmas. It was turned on via emergency because the landlord hadn't paid the most recent bill. We were told that if it wasn't paid, the city would vacate the premises. So we held off on unpacking, except for making sure we had room for our tree and the boys gifts. Even with the water turned on, we still didn't have hot water. There was a flag on the water tank saying a part needed replaced before it could be lit. So I took the boys to my parents house so they and I could bathe, and Jayson and Michael went to his moms house to do the same. Obviously this couldn't happen every day, so we took sponge baths in between. For two weeks we didn't have hot water, which we finally have now. The landlord waited until the last possible second to pay the bill, but it was paid and they have been much better since then.
The house is a fixer-upper, which we knew when we signed the lease, so Jayson has been working on patching holes and painting. The windows are extremely drafty, so we've spent a couple of nights with everyone sleeping in the living room and the rest of the house closed off to conserve heat. The best part was when AEP shut us off. Wen we transferred service, apparently we had to pay a new deposit, which no one communicated to us. I spoke with a supervisor who was nice enough to put that on our first bill, which they normally do not do. But they said that the landlord had to do some sort of identification saying that we lived there, so we had another night in the living room. This time with candles and lots of blankets! Luckily it was turned back on the next day, so we didn't have to worry about staying somewhere else.
Christmas was absolutely amazing. We received so much help that the boys had plenty to open in the morning! We were so grateful, and I cried over it because without that help, these two would have had practically nothing. Thank you to everyone who pitched in!
New Year's was just another night/day for us. We actually stayed up until midnight (not the kids)!
Since then, Jayson got a new job at Olive Garden and has been working in the evenings. We have to transport the kids to school until they get the bus switched over, but they are now in the mornings instead of the afternoon, which I like. Both boys are cranky in the morning lol! So we've basically been trying to slowly get the house in order and make it home.
Last week, J and I noticed that there was a spot on Jaxson's left pin anchor that looked like it might be coming through the skin. So we went and saw Dr. Pearson, who said it was okay, just keep an eye out for infections and such. We haven't seen any signs of infection, but either that day or the day after, Jaxson started throwing up. I let it go, thinking he might have a virus, but after nearly a week, I called again. Besides getting sick after almost every feed, he wasn't taking full feeds, had been cranky and not quite himself. In the last few days, we've noticed him getting tired more often. So we are at the hospital for a CT to check for pressure in his skull. He also has two more spots at the back of each pin, and several spots popping up along his incision. I have no idea when we'll get the results of the scan, but I hope it's soon. And I hope it's nothing that has to be handled now. Jaxson is supposed to have his distractors out and his cleft fixed in 2 weeks, so if he needs a shunt before that, I have no idea what it will do to the surgery. It's just so frustrating to watch him go through this!
On top of that, Jeffrey has been more and more clingy and sensitive. He throws at least 3 fits a day and constantly has to be talked to about his attitude. I know he's going through just as much, if not more, than the rest of us, but it's. hard to not get angry. Where did my sweet, smart, independent little boy go? Who is this sensitive monster that's suddenly attached to the hips of his dad and me? But he's so amazingly sweet (still) and most of the time he's a blast to play with. He always wants me to read to him, which I love, and he loves teaching his brother new signs from the Signing Time DVDs. I know he's just acting out because he doesn't understand anything that's going on. Mom and dad are always stressed because of money (or lack there of) and he can't do a lot of the things that we used to do with him because we just can't. He knows his brother isn't feeling well and he doesn't understand why or hat he can do to help.
...
And now for the current update. Jaxson's CT showed that there could be more fluid in his head. They need to do an MRI to determine if a shunt is needed, but he can't have that done until his distractors are removed. Why? Because he has metal in his head. That would be a pretty devastating situation. So he's having his distractors out tomorrow afternoon most likely, and they are going to try and do e MRI right after. Dr. Grondin says that he doesn't think there's pressure because his 4th ventricle would be bowed, but it's not. He said that's why they need the MRI because it will show if there's pressure. I am of the belief that there actually is pressure. If there isn't, Jaxson may have to have an additional surgery to fix his Chiari malformation. If they determine that is the course of action, they will go in and remove some of the bone at the base of his skull to create more space. And now I have no idea when he will get his cleft fixed now. It's one thing after another with this kid. And it's so frustrating to watch. No child should have to worry about serious illnesses or major surgeries. Jaxson is no exception. What did he do to deserve this? Nothing. No kid does anything to deserve being sick. Seeing my baby in pain, and other kids too, is so heart breaking. I just want to scoop them all up and hug them until it's all better.
Those thoughts are always in the back of my head, but in the front of my head is pure amazement and awe. If Jaxson has taught me anything, it's that you can get through any situation and come out stronger. Long as you keep smiling. And just abut every kid who has to go through something like this is the same way. God truly knows which kids are the best to be our teachers. As much as we work with Jaxson to teach him new things and get his development up to where it should be, he teaches us something new every day. He knows what his limitations are and uses what's around him to get by. He's the most resourceful kid I have ever seen! Jeffrey would rather I do something for him than figure it out on his own, same as most kids. We sometimes use Jaxson as a teaching tool for Jeffrey, and when Jaxson gets older we will do the reverse. I couldn't ask for two more amazing children. They are so different, yet so perfect!
So now I'm settling in, Jayson ran down to get us some food and Jaxson is asleep. I'm exhausted. So I'm going to eat when J gets back and then try to catch up on a bunch of stuff for Jaxson's Facebook page and some research.updwtes on his current status will take place on FB tomorrow. I'm not sure when I'll be able to blog again, but hopefully soon.
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