Ecstatic!

So Reiko had his surgery last Tuesday on the right leg and everything went smoothly.  Dr. Fassier said that his bones were soft so the rods just slid right in with no osteotomy(fracture) in the femur and only one osteotomy in the tibia, but otherwise the surgery went perfectly, he had little blood loss so no transfusion was needed either. They gave him something called a cottel(??) block that blocked the feeling in his nerves in the leg, it was supposed to last 24 hours but lasted about 8 hours, we spent the night and most of the next morning trying to catch up to his pain, but by the afternoon he was finally comfortable and he was back to his normal self. I was quite surprised how amazing he handled everything. I still have him on his pain meds every 4 hours on the dot so that we don't get behind his pain again, and we have been back in the hotel for 2 days now, so only 2 days in the hospital after surgery! He is already getting around like normal in the hotel, when we first came in to the hotel I put him on the floor with a pillow under his leg, assuming he would stay there while I put some things away, well I turn around and to my surprise he was moving around the floor, not evem 48 hours after surgery!! He has been such a good lil guy, he was pretty grumpy yesturday but nothing to unusual for him. We go back to the hospital Tuesday and his left leg surgery is Wednesday, I expect him to take alittle longer to bounce back and I also expect him to be very pissed off that both legs will be casted at once, but after seeing the xrays of his right leg, it is so worth it. So here it is, the amazing work of Dr. Fassier on the right leg!

Surgery postponed!

Reiko started getting a cough at night 2 days before surgery and so the surgery has been postponed til the 21st and 29th of this month, so 11 days away and hopefully the cough will be gone, he didn't cough last night so hopefully that is a good sign. He still had his Zole infusion and for the first time he had the energy burst I always hear people talk about, he was absolutely crazy hyper in my arms! I talked to Dr. Glorieux about switching treatments and he explained to me that until Reiko's leg's aren't bowed from the surgery he will keep fracturing them, and once the surgery is done we will really get to see how the treatment is working for him, so I agreed that after the surgery we will continue with the Zole for another year, and see if it makes a difference, if not then he agrees for us to try the PAM. It was a great time down there though, the first night around 9 another OI mom named Kyra came to our room and we finally met after a year of talking, she is a wonderful person and I hope to have a great friendship with her even if she does live so far away in B.C. Her Daughter Clairesse is soo cute! We also met the family from Nepal we have talked to for so long Durga and her son Animesh and he finally got his leg rodded. It was nice to have company while down there, it made it much more enjoyable! I hope that there will be more people there when Reiko has his surgeries. Reiko is so happy and comfortable since having his treatment, he just seems so much more lively right now, its wonderful. I was happy to be able to come back home to Derek and Kai early and now I think I am prepared for next time we head down, but I am not bringing nearly the same amount of stuff  lol, those bags were heavy! And we figured out that next time we will be taking the train home so his hippo carseat will for sure fit. Things are going to run smoothly, I just know it.
Jessica

Almost Ready.

In 24 hours Reiko and I will be at our hotel in Montreal. the first few days will be easy, it will be the usual, go to the hotel, drop of bags, go get some food and then have an early bedtime, next morning wake up at 6, have something to eat before Reiko wakes up, get him ready and out the door to Shriners by 730 am, where they will give me some cotton balls to catch his urine, they will access his port, have a DEXA scan done, xrays, meet with PT and OT, meet with his doctors, get his treatment and then eventually go back to the hotel after meeting with 15 different people. But the next day we don't go home like we usually do, the next day we will pack our bags and bring them to the hospital where he will be admitted for his surgery the next day. The surgery day I don't know what to expect, they have it scheduled for 12pm, but who knows if that will be right. But my sister will be there to help me so that is so important. I am kinda ready, I am ready for the surgery to be done and over with, but the hardest part I am in no way ready for is to leave Kai and Derek. I look at Kai today and get emotional looking at him thinking that for 23 days I will only be able to hear his voice, no cuddles, no kisses, no playing, just his voice. I hate leaving Derek to, he is my husband and don't tell him I said this but my best friend (he doesn't believe in spouses being best friends lol). I will miss his companionship, his love, his kisses and hugs, his funny personality and just being with him. Talking on the phone just does not do any justice for the real thing. Reiko is due for his zole and you can tell he is in pain right now, and he is getting a cold now, I just hope it goes away before thursday. There is so much on my mind right now, so many things running through it and is overwhelming. I am ready for the stress and anxiety about the surgeries to be over with. I will update you all as soon as I can. xoxoxo Take care!

Breakdown..

I had one of those days today. It was my nephew Drakes' 4th birthday party today, as well as a birthday celebration for my nieces Shelby and Alyssa. Reiko's right leg has been sore, fractured somewhere in the tibia I am thinking, no point in an xray now since tuesday he will have xrays and a Bone Density Scan. You see everytime there is a family event, derek and I really don't get to truly enjoy them, there is the constant worry someone bumping into Reiko, someone tripping and hurting him, something breaking. just a constant worry. We live on eggshells just waiting for the cry, and Reiko doesn't understand why he can't go on the floor like he does at home and he gets very angry with us. Not to mention he is also due for his Zolendronate treatment and he probably is in a crazy amount of bone pain. Well we were trying tp put him in his seat to eat and of course he lets out the cry, and honestly I just lost it, I went to the car to get some morphine and just couldn't hold it together, in front of the family as well, first I made derek take over with Reiko while I went into the bathroom and just cried for about 5 minutes before someone knocked, then I went out tried to pull myself together but couldn't so my sister told me to come out to the garage and I just cried hard into her shoulder. Its so hard some days, so badly we just want to have a normal day, I wish we could have the days we had before, where we went somewhere and didn't worry, we felt at ease and could just enjoy the time with family, but now its constant stress and worry...and sadness for me. I wish I could see him play with his cousins, and just enjoy his time with them, but instead he is stuck being held or in a seat watching the action. No one understands the heartache I feel seeing him want to play with them and he can't, and to see him fracture all the time just kills me. I just love him so much and would do anything for him, its just really really hard. I'm just talking out my ass right now. I don't even know how to end this post tonight. so I'll just say goodnight and please pray or send some good thoughts to Reiko.