Nerves....

I'm starting to get the nerves now, tomorrow is a week until we leave for Montreal. It's hard to think that after having such an awesome week with Reiko, so happy and pain free and moving around freely that he will have his first major surgery on one of his legs, followed by the other 12 days later. I hate to think that in a week he will be in a lot of pain and there is nothing I can do about it. I know he needs these surgeries so bad, hell I was the one emailing the doctor to get them done, but now that they are so close, its just scary to think of him being put under twice and laying his life in someone else's hands. I am also nervous about leaving Derek and my KaiKai for 3 weeks, when Derek works at night Kai sleeps in my room. Last night I went to bed and just watched him sleep for a while and fell asleep holding his hand. It breaks my heart to know he will not be with me for almost a month, thats insane. I know I am going to just feel so sad when I am away from my amazing husband and my lil man. No one tells you that you might have to go through things alone when you most need your family around. But I also feel awful for Derek because he will be away from his baby boy during a major surgery, I have realised I have kept talking about how I was going to be all by myself and I would be away from Derek and Kai for 3 weeks, but finally realised that its not just Reiko and I going through this, Derek and Kai will be going through this in their own way and it won't be easy for any of us. So I have been trying to enjoy the moments we have together and not get frustrated with Kai so easily over simple things, because in another week I will miss them so much.

I have been racking my brain over and over again about what to bring, what to expect, how will I do things by myself after his surgeries and at this point I am just ready to get everything over with so that I can just relax. I absolutely hate the unknown, I don't do well when I can't plan things. Even the day of the surgery is annoying me because I have to go to the Ronald McDonald House at some point to sign in and get the key for my sister to stay there and I don't know what time I can do it. I am hoping that the surgery will be around 2 because I can't get the key before 2pm, so if the surgery is in the afternoon I can leave when Reiko goes into surgery and be back before he is out of surgery. If not I have to leave my sister with him in recovery and go get the key, why can they not just let my sister sign in instead of me?! especially on the day of his surgery!
But it will all come together for us, it will, it has to.

I will try to keep you all updated about his surgeries.
Take Care!
Jess

daddy didn't bring him in the store!

chillin out and watching tv

People of Walmart - Cutest baby ever!

Kai and Reiko in their matching PJ's

bathtime tonight!

Reiko woke up in some pain tonight, gave him some advil and he passed out on me, and no I am not losing my hair, just a bad hair moment lol

Kai went sledding with his uncle Darcy pulling him behind the snowmobile, don't worry it was slow!

Life

Ohh today I am having such a hard time being awake, I took nyquil last night for my cold and it just knocks me right out! I don't mind, its nice to have something actually let me sleep while sick, but I feel so drained today.

Kai went to Oma's yesturday for the weekend, but he will be coming home today, for some reason he woke up at 11 and started crying about wanting to come home, he cried for an hour before they called here, daddy was awake and calmed him down but then he made Oma stay awake until 4am watching tv, then only slept til 8. So I will pick him up today, I have a feeling this is due to him knowing that Reiko and I will be leaving for a while in February. I have been telling him that mommy and Reiko will be leaving for a long time to go to the doctors. He has been good about it, but I think when the time actually comes after a week he will be wondering why we are not back yet and Derek may have a hard time with him. Kai had a bizarre week at school, he was awfully tired his teacher said and he bit a classmate twice this week. The first time he had a really hard tiring day she said, he thought that the boy was hitting another classmate and he bit him, he was sent to time out and I decided to keep him home the next day to just be lazy and hopefully be rejeuvenated for school the next day. Then the day he came back he bit the same boy again but this time the boy hit him first, but no one saw it, and then he bit him in retaliation. We had a big talk that night about going to the teacher when someone hurts him physically/emotionally and hopefully next week will be better. He is generally a gentle boy and has never had a biting problem.

Yesturday Derek was supposed to go get the "snip snip" done, well we went to the hospital and he was ready, but he didn't know he was not supposed to eat breakfast, he was then informed he could not have the vasectomy done because they inject adrenaline in and it causes you not to have a gag reflex, so now he has to wait again..I was not impressed, it was not in the pamphlet of what to do and he does not remember what the drs said at his pre admit a few months back. I was ticked that he couldn't remember that one thing about his stuff but I have to know everything about Reiko's. But later on we laughed it off and hopefully he can get it done in the next two weeks before we go to Montreal.

Yesturday Derek and I were able to give Reiko his first bath since the bad break in his right leg, we thought it was his femur that was broken, but turns out its his tibia. He is much more comfortable now out of the brace and in a regular splint. Plus its so much easier for us, I will bring him with me to pick Kai so that he can actually get out of the house for the first time in weeks! He hasn't been out in almost 3 weeks I think because of the fractures! This will be a treat for him lol.

Last night I went to my mom's house for a visit and we were looking at pictures on her computer and we came across some of Moxy and I just started bawling, I miss him so much. I would give anything to see him one more time, to have a kiss, hug and one last goodbye, I never got to say goodbye, We found a video I was hoping to find and it was so funny it was of me making high pitched noises and him howling...It brought more tears, it was so good to see him alive again for a minute. I just wish he was still here. But we felt him last night at mom's. I was saying "MOXY COME HERE BUDDY, GIVE ME A SIGN YOUR HERE!" and it started out my mom said her back felt really cold, and then all of a sudden the cold came right over to me, and was laying beside me, it was really cold feeling and it wasn't there before, It felt like alot of cold air movement beside me and it made me so happy. I really hope it was him.

That is all for now! take care. hope you all are good.
Jess

Moxy and I

Exciting and scary news!

First things first, Reiko had a bad fracture in his Right leg the other day, Derek was holding him and said all he did was switch hands, nothing unusal, and he heard a loud snap, not good at all. He had a rough couple days, lots of meds and very little movement, it was hard because changing his diaper was hell and even lifting him for any reason at all was pure torture on him. He is finally over the hump and last night he pretty much slept through the night and without meds, today he is doing great and hopefully that will be the end of the pain. Now onto the exciting news...

Reiko is getting both legs rodded in Montreal by Dr. Fassier Feb 9th and 21st (one leg each surgery) both his femurs and tibia's will be rodded. It is very exciting that he is going to finally get these rods and hopefully they can help him with the constant fractures he has been having in his legs, and its scary because we will be gone from Derek and Kai for 3 weeks. I am doing it all on my own and that scares the hell outta me. I am alittle frustrated that I have to pack for 3 weeks and then when he gets his surgery we have to pack up everything in our hotel and bring it with us to the hospital for the 3-4 day stay and then bring it all back after he is outta the hospital, and then I can't figure out how I will grocery shop since I can't buy the food before hand and then after, I have to somehow bring Reiko to the grocery store, post op, and in the snowy streets. Last year when we had his treatment in February I had to get groceries and I had Reiko is his stroller walking down the street and the sidewalks were completely snow covered and they didn't clear them off at all, I am scared it will be like that again and it will just put him in so much pain. I have no idea what I am going to do and I am stressed out to say the least. The hardest part about dealing with this disease when you have two children is when I need my husband the most, he can't be there, and that is hard, because these surgeries have me really scared about what to expect Reiko to go through. He is such a strong boy, but this is new territory. But at the end of the day, these surgeries are exactly what he needs, his left leg is so bowed and this is going to help him big time! I am also switching to the Pamidronate treatment after the surgeries, I do not know if the Zole has worked on him (slowing the degeneration of the bone, decrease bone pain, decrease fractures) because he is constantly fracturing, just last week 4 fractures in 10 days and 21 since October! He has had over 100 fractures and so I just need to try this other treatment and then if he is still this fragile then we know that its just his life and we have done everything we can to help him. I just pray that the other treatment will work. It's perfect timing for the surgeries to because this is Reiko's last treatment as part of the clinical study on zole for infants, so we at least finished the trial, we have to still go back in May for the final evaluation but thats it, then we go to Montreal once a year until he is in his 20's, we can get his treatments in the city an hour away now!

Kai and Daddy went to see the Monster trucks today with my brother in law and nephew, they left at 830 so they could go get their tickets and also a pit pass so they could actually go up to the monster trucks, I am sure they loved seeing them up close, the actual show isn't until 12, so I am sure the boys are driving them crazy lol. I hope they have a fantastic time. I have never been to a show before, but everyone says bring earplugs(they did) cause it is so loud.

This afternoon my best friend is coming over to watch Reiko for a while so I can go to another friend's house and get a psyhic reading, lol, I have been to lots before, maybe this one will actually get something right.

Ok thats all for today, take care everyone!

Here are some pics!

Right leg broken, Left arm broken

A few days before breaking his leg, Reiko wouldn't nap and for the first time passed out at supper lol



Kai hanging out in a tree!



Reiko saying "CHEESE"

The boys hanging out!

the beginning of January, his right shoulder and left arm were broken, he was in a straight jacket, which did not last long, had to take one arm out at least.

Kai doing an arm bar on daddy!



Reiko doing an arm bar on daddy!



Sorry!!

Sorry for the hiatus! Not much has changed here since November, Reiko is still in his fracture cycle, currently his R shoulder is broken as well as his L arm, he has been in alot of pain and its been hard on all of us. But Let me go back and tell you all about Christmas.

Just before Christmas my dad was put in the hospital for pancreaitis, it was quite scary and he was told that he was very close to dying, Thankfully he pulled through and he is home now, he was in for 2 weeks, missing Christmas and he still isn't back to normal yet, he has lost probably by now 30lbs and you can really see it, he has no appetite at all, but hopefully soon he will be back to normal. So Christmas was definitely not the same without him at home being grumpy lol. We still had a Christmas dinner at my moms Christmas eve and it was hard on her, she was sad and was really missing him being at home. Next year will be better.

Christmas for our little family was actually fantastic! Reiko had almost 2 weeks break free so that was a wonderful present to him. Christmas day Kai woke me up at 730 and was super excited, we came downstairs and he was jumping up and down looking at the presents, but it was pure torture for him because he had to wait 30 minutes until daddy got home from school. And When daddy got home the jumping up and down started all over again and he was so happy to finally open his presents. Reiko didn't really care about opening the presents so Kai "helped" him open them all lol. After the presents were open daddy made breakfast and then we headed out to Oma's for more presents. But Kai did something so unlike him, he was so excited about the new toys he asked us to go home! So we left early. Over all it was a great Christmas, Derek bought me a pedicure and massage, which I go for Monday, my first Hot Stone Massage ever! I am excited for it. OHHHH and also of course when Derek was opening his gifts from me, he opened his new shirt and low and behold he is wearing the EXACT shirt I had bought him. The story with that is, I bought him the shirt on his wishlist, one of the many shirts on it, I forgot which one I bought and I wrapped it right away, later in November at  MMA fight he bought a shirt, he even joked he hoped it wasn't the same one I bought him. So for a whole month of him wearing that shirt I never realised he already had the same one. Now he has two shirts, lucky him lol.

New years was boring, Derek worked so it was just me and the little men, went to bed before midnight lol. This last week was hard cause the fractures started up again for Reiko, it started out with the shoulder so that was wrapped up so later this week his other arm broke, and so I had to let out at least one limb so he wouldn't go crazy in a straight jacket, he is using his arm with the broken shoulder but very limited. I have been having very whoa is me days this week, pitying myself and Reiko and this awful, stupid disease. Today was a hard day, because it seemed like everything I did was hurting him, and he was just giving me this look like "why mommy" and it just killes me to see him hurt like this. But hopefully things will finally calm down for him, he just needs this fractures to stop for a long time.

Kai has been on Christmas vacation the last 2 weeks, loved the first week, the second week I was counting down the days until school lol. He has been great but very bored, its hard on him when he is constantly being told "BE CAREFUL" "NO RUNNING" "QUIET" our house is just not meant for being crazy and its unfair to him, but its something he has to grow up with unfortunately.

As for me there isn't much different, I start another online course Monday, I finished my last 3 courses with A+'s and have a 4.20 GPA so far, and I am super proud of that. In February I have to get my L breast ultrasound because I had a lump but it changed from a ball to a long ridge, my dr says he doesn't think its cancer but because it changed shape he wants to be safe, and if the ultrasound is iffy then we will proceed with a mammogram. I am not nervous about it, but I will be if they do have to order the mammogram.

Thats life right now. Another boring blog entry, sorry lol. Take care everyone

Jess