Reiko is in Children's hospital again, he has pneumonia, it came on very quickly this time, at 6pm he was fine other than the sniffles he has had for a few days,by 7pm he was struggling to breathe, so I brought him to our local hospital, they were absolutely amazing, I walked in the door and told them what was going on and they brought me right back with him, within minutes he was seen, then was brought to xray for his chest, and for once we were able to put him in the thing that lets him sit up and get the xray done, before it would have broken his arms, anyways, they gave him a ventolin treatment afterwards and then said we should head down to the children's hospital, so we have been here since 1030 and I haven't slept yet, because we are being admitted, but there are no beds so we are in emerg and there is alittle boy freaking out in the next bed to us, oh and Reiko is wide awake because of said boy, by the way it is 3:30am! The doctor here said that he has a significant pneumonia in his right lobe and we will be here at least a few days, so thankfully I was smart and packed my bag before we went to our local hospital, brought my pillow, school books and laptop. So we are hoping that they will have a room for us early in the morning, cause I may just got alittle bonkers with no sleep and being around crying children all the time. Plus it will just get Reiko even sicker, he is immunocompromised to begin with because of his rib deformeties...I hate hospitals.
Tonight was a rough night with Kai after school, well it has been every night after school lately, he is overtired, so everything he does consists of breakdowns, but when it finally comes to bedtime he is so overtired that fights it for about an hour, when just a few hours earlier he would do anything to pass out. We had his school's annual potluck dinner at 6 this evening, we brought meatballs, the only problem was the kids loaded their plates so high that there was hardly any food left for everybody else, it was fun, but that is when Reiko's breathing hit, he just was sitting in his bumbo chair happy one minute then just struggling to breathe the next, so we brought him home where he proceeded to puke on me. Kai was really good though with Reiko and I having to go to the hospital, he was making Reiko laugh while we waited for my mom to come pick him up so Derek could drive me down to the hospital here, it was dark and raining, not a good thing for me to drive in, I hope he went straight to bed for them and is a good boy. I already miss him.
Ok, I am going to .... I have no idea, sit here and listen to the people behind me,...... its not like I want to listen to them, its right in my ear, we have a curtain between me and his screaming.......ok...night...
Friday, September 30, 2011
Saturday, September 17, 2011
It is weird, I started writing this blog last year because our life was always crazy and I felt it would be good to write it all down, and to share what living a life with OI was like..but now life is so normal its to boring to put in a blog haha. so I'm sorry that it may be boring you now, but I quite like it that way. Life right now is pretty damn good *knock on wood*
Kai loves school, he has always been a social butterfly though, makes friends easily, isn't very shy, so he is doing great there. His teacher says he is a busy little guy, is a good boy though, just needs to be reminded to just relax sometimes. His teachers are wonderful though. And we are loving having him at school, my house is actually staying clean! Reiko is really enjoying the quiet time with just mommy and daddy, he gets us to himself and he is just hamming it up! I thought Kai would be grumpy or tired after school, but the crazy little man is just as hyper as he is in the morning lol, he is just crazy! He is at oma's for the second night though, he is enjoying his Oma time!
Reiko is doing awesome, he is just so fast getting around that floor! and he always has to be moving now, he hates having to sit somewhere, which in turn makes it hard to work on his sitting and physio. He likes to purposefully get into the cuboards now and make mommy pull him away from them over and over again lol, to bad this cabinet is old and cannot be child proofed! But honestly I cannot complain one bit about him getting into things because my God he is doing it and I didn't know if he ever would be able to get around! He is really strong right now to, these treatments are seriously miracle drugs, without them I think he would still just be lying still and not doing anything. Which is also why it is hard to think that he only has 2 more treatments left and then they will try to only give them to him once every 6 months, and I know he wont be able to handle that, he gets so grumpy as the 12 weeks roll around because it wears off and he is in alot of pain then! So hopefully we can convince them to keep it every 3 months!
I started another course last week and another one next week, and the third in October! I really hope they aren't to hard to handle at once, but hard work never hurt anyone! it will only make me smarter lol. Derek is doing great as well, just finished another 40k bike ride with my brother in law and cousin last weekend, he really really enjoys doing those! I think he will be more than ready for the triathalon next year! he is amazing! Ok time to go to bed! have a good one everyone. xo
Kai loves school, he has always been a social butterfly though, makes friends easily, isn't very shy, so he is doing great there. His teacher says he is a busy little guy, is a good boy though, just needs to be reminded to just relax sometimes. His teachers are wonderful though. And we are loving having him at school, my house is actually staying clean! Reiko is really enjoying the quiet time with just mommy and daddy, he gets us to himself and he is just hamming it up! I thought Kai would be grumpy or tired after school, but the crazy little man is just as hyper as he is in the morning lol, he is just crazy! He is at oma's for the second night though, he is enjoying his Oma time!
Reiko is doing awesome, he is just so fast getting around that floor! and he always has to be moving now, he hates having to sit somewhere, which in turn makes it hard to work on his sitting and physio. He likes to purposefully get into the cuboards now and make mommy pull him away from them over and over again lol, to bad this cabinet is old and cannot be child proofed! But honestly I cannot complain one bit about him getting into things because my God he is doing it and I didn't know if he ever would be able to get around! He is really strong right now to, these treatments are seriously miracle drugs, without them I think he would still just be lying still and not doing anything. Which is also why it is hard to think that he only has 2 more treatments left and then they will try to only give them to him once every 6 months, and I know he wont be able to handle that, he gets so grumpy as the 12 weeks roll around because it wears off and he is in alot of pain then! So hopefully we can convince them to keep it every 3 months!
I started another course last week and another one next week, and the third in October! I really hope they aren't to hard to handle at once, but hard work never hurt anyone! it will only make me smarter lol. Derek is doing great as well, just finished another 40k bike ride with my brother in law and cousin last weekend, he really really enjoys doing those! I think he will be more than ready for the triathalon next year! he is amazing! Ok time to go to bed! have a good one everyone. xo
Thursday, September 8, 2011
my little boy is growing up!
Kai starts his first day of Kindergarten tomorrow! my little boy is growing up so fast. I am so excited for him, and I think he is excited too! I packed his lunch tonight, gave him a bolognea sandwich, chocolate pudding, a little bag of cookies, broccolli, carrots and blueberries. I know it sounds like alot but they get 2 "nutrition breaks" plus I figure it will be good for being gone from 830-315! It is bittersweet though, on one hand I am so glad to have a clean house for longer, and to see him grow and learn with his peers, but on the other hand, he isn't little anymore, soon he will not want to cuddle with me, or hold my hand, he is growing up and well there isn't anything I can do about it. But I know that he really needs this, he always has so much energy everyday, and not enough stuff to occupy it.
Reiko has been doing amazing! He broke his shoulder in August, but *knock on wood* has been doing really well since. He is such a trooper, today his nurse came over to flush his port, and he cried for less than a minute then was back to gabbing away! He is so fast on the floor now too, always going places, especially under tables or stuff like that, he likes to hide! I put him on his stomach for the first time since June or July yesturday, but held my hand under his chest so he wouldn't put to much pressure on the healing arm and also so he wouldn't instantly try to roll over, and he moved one leg up as if to crawl, I really think he would be able to crawl if he wasn't so stubborn about staying on his belly, he is just doing so good. no complaints at all!
Derek and I are doing good as well, we are planning on doing a trip to wonderland in October for their Haunted thing they do every halloween, we are so excited and it looks really scary! we are trying to get a bunch of people to come, it will be so cool! Ok I wish there was more to tell but we are kinda boring right now! ohh other than the video was supposed to be done last weekend for the audition tape to Extreme Makeover, I guess now it is a wait and see thing! wish us luck~ take care!
Reiko has been doing amazing! He broke his shoulder in August, but *knock on wood* has been doing really well since. He is such a trooper, today his nurse came over to flush his port, and he cried for less than a minute then was back to gabbing away! He is so fast on the floor now too, always going places, especially under tables or stuff like that, he likes to hide! I put him on his stomach for the first time since June or July yesturday, but held my hand under his chest so he wouldn't put to much pressure on the healing arm and also so he wouldn't instantly try to roll over, and he moved one leg up as if to crawl, I really think he would be able to crawl if he wasn't so stubborn about staying on his belly, he is just doing so good. no complaints at all!
Derek and I are doing good as well, we are planning on doing a trip to wonderland in October for their Haunted thing they do every halloween, we are so excited and it looks really scary! we are trying to get a bunch of people to come, it will be so cool! Ok I wish there was more to tell but we are kinda boring right now! ohh other than the video was supposed to be done last weekend for the audition tape to Extreme Makeover, I guess now it is a wait and see thing! wish us luck~ take care!
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