Life's Good!

This will sound familiar, I am sorry lol.  I am a terrible blogger. So lets start off with what this year has been like. Starting Jan 1/13 I started a strict regimen and lost 30lbs by April.  I was running, doing insanity and working my butt off and feeling amazing. I even did my first 5km run! I fell off the wagon since then, gained a bit of the weight back. I have to get on top of this again though, I worked to hard to let it all go to waste, but why does it have to be such a struggle? Some amazing things have happened this year. June was a huge month, we bought another house, its huge, and with the help of the Coldwell Banker Charity they helped us with the down payment and anything to help make our house accessible for Reiko. The day they handed us the check at the golf tournament was one of the most surreal moments of my life. I looked around and couldn't believe the love they all had for our family. We are soo blessed. The end of June Derek and I went on our first vacation together, we went to Punta Cana,  Dominican Republic. I was a wee bit nervous that we wouldn't have much to talk about for 8 days alone together, but it was a great trip with him. We were back in honeymoon stage again and we really needed it. When we got back from the trip we got the keys to the house 6 days later and its been amazing. This house is so beautiful, the main floor has huge wide doors for Reiko's wheelchair. It has a finished basement, a big backyard, big bedrooms, hardwood floors. Its just amazing! Its so easy to keep clean since its so uncluttered. We are listing our other house anyday now, just waiting on some legal stuff. August was one of the most amazing experiences of my life because I met the one and only BACKSTREET BOYS!!!!! I have only dreamed of this since I was 8 years old! I brought my sister with me as her birthday present for the next 10 years, and we waited in line for 3 hours and then when we found out they were just around the corner I leaned over and looked at them, that is when, no word of a lie, Nick Carter turned around, looked at me, gave me the best smile I've ever seen, and friggin winked at me! What do you think I did? I cried!!!!! Of course seconds before I was to actually meet them! So when it was my turn I tried so hard not to cry and shook their hands while saying "im so sorry, I look like an idiot" AJ then  grabbed my shoulders and said "come here sweetheart" and then we did our picture and I asked Kevin to sign my cd and he tried by my pen died! Of course! After Laura and I met them we watched their concert and they were so amazing, like usual. I will never forget that moment! Laura and I had the best time together to, I love spending time with my sister, we laugh our butts off! Saturday Derek is taking Kai to Comic-con for the first time, they are both excited! Kai starts grade 1 in a week already. He has had quite the summer as well. He lost his first 2 teeth! He is taking swimming lessons right now, not sure he will pass but we plan on keeping him in lessons til he is a very good swimmer. Reiko has been doing phenomenal this summer, he had his first fracture in about 6 weeks last night. His arm, like usual. He is doing good today with it. He is a typical 3 year old now, full of attitude and grumpiness. He is getting so strong. We are working at kneeling at the stairs right now and standing. He is in daycare 2 days a week for half days and he loves it. Life is great right now, I hope it stays like this for a long time. xoxoxo
Ciao!

Life today

I am ashamed of myself, it has been almost 5 months since I last wrote a blog. I am sorry. Life has been relatively good here. I finished school in August with a 4.20gpa and best of all I started a job even before I graduated in July. I am now working clerical at a Medical Health Centre in a town 10 minutes away from home. I have never worked in such an amazing environment before, the people are so wonderful and understanding. I was really questioning when I had the interview whether to explain about Reiko and his health issues that could effect my job or to wait and see if they even hire me, I decided to tell them the truth right away. I was hired a few days later! I do tons of different jobs there, I can make appts and sign them in when they come for their appts, I do scanning, paperwork, taking pts blood pressure  (the old fashioned way, no machines for me :) ) and height and weight checks, I do tons of other stuff to. I love going to work. I work 3 days a week for the moment but hopefully will be fulltime at some point. I graduate from Fanshawe in November and I am so excited for it!

Derek has some exciting news too, in August he did an event called TOUGH MUDDER, Which is where he and 17,000 other people who did this insane event, they had to climb up Black Diamond ski hills 6 times and do 18 obstacle courses along the way that included getting zapped by 10,000 volts of electricity. The top 5% would go onto to do the WORLD'S TOUGHEST MUDDER, Derek and my brother in law did it in 3 hours and 20 minutes, so he didn't think he even stood a chance at the top 5%, especially with how many people were there that weekend. But 2 weeks later he found out that he and my brother in law did make the top 5% and they now head down to New Jersey in November to compete in the World's toughest mudder, which means they have to do the same event as many times as possible in 24 hours to win a grand prize of $15,000!  He is super excited about it! Derek also has another boxing match this weekend and its in our hometown 15 minutes away from here so all our family and friends will be coming to watch!

Kai started school again and the teachers have been so impressed with him, he is much more grown up this year they said, and alot happier! I am so proud of him! He is not interested in reading though yet and I hope he can find the confidence to do it at some point this year. He is turning 5 this november and I don't even know how the time flew by so fast! He is a wonderful boy and even better big brother!

Now onto Reiko, my crazy little 2.5 year old! He has had a bit of a rough couple months, his arms are breaking weekly now, kind of how his legs were before the roddig but they won't do rodding on his lower arms because the rod has no where to grip onto and so it would migrate in his bone, which would require more surgeries, I guess they don't do that surgery to many people at all. So unfortunately he/we will just have to deal with these fractures weekly and hopefully they will ease with time. He has his treatment in Montreal in August so Derek took him since I didn't want to ask for time off work so soon after starting there, it went well he said and thankfully his bone density finally went up after a year of doing nothing! They agreed with us to allow him to get his treatments every 4 months instead of their the 6 months we tried, it was just to hard on his body.  I was very upset last week though because Montreal had sent us a letter stating all their findings from his OI conference he attended the day he got his treatment, and it told us he has scoliosis with a 25 degree curve at the L3 spine. It also told us all his vertebrae were crushed again, so much so that he has lost about 40% of his already tiny stature. so I cried..but you know what? he is still smiling through it all, I had no idea he was even going through that because he just smiles and laughs and is a happy child. So I made him an appt with his pediatrician for 2 weeks from now to talk about the scoliosis and have talked to his ortho specialist and they are waiting on some spinal xrays that showes the scoliosis. But better news, Reiko is really talking up a storm now, alot of people have to ask me what he says, but its clear to me haha.  He is getting better every week says his speech therapist! He is a smart little guy and really stubborn which is good and bad haha. We also finally got him off the bottle, which felt like it would be forever that was done, but he did it no problem! So I will try to update more often, I have no excuse.

Before I log off, we had some family photos done this week and they have turned out absolutely amazing! check out her site to see the pictures at http://www.hopephotography.ca/?p=3982

Take care everyone.
Jessica

Can't get any better..

Reiko's surgeries have changed his life, very much for the better. Before his surgeries he was unable to sit unassisted, he was breaking every week sometimes a few times a week, he was depressed, he was in alot of pain, was on pain meds almost consistently for 4 months, he seemed more like a baby then a toddler, After the surgeries, Reiko is sitting unassisted and even started turning himself in a circle while sitting, one step closer to bum scooting, we are working on standing up in his KAFO's and his stander from Shriners should be in this week,i'll attach a picture. He is happier than ever, he laughs all the time, he is also becoming a toddler which means terrible two's. He goes from happy to pissed right off in seconds when things don't go his way. I am so proud of how much he is thriving, his fractures have slowed down tremendously since the surgeries. The surgeries were the best decision we ever made for Reiko to date. Life has been good here, we had 2 other visits to Montreal since my last post, both were post op appts, he is starting to heal nicely, and we had 3 days of therapy 2 weeks ago with Stephanie his PT, she was absolutely amazed with how well he is doing, she said that he is so determined to get places and she see's him getting mobile very soon.

Reiko in his stander at Shriners in Montreal

Kai saying his goodbye's to Daisy May 1st 2012 :(

This last week has been hard on the Quinlan family, we put our beloved cat Daisy down, she had a severe skin allergy that made her so uncomfortable that the minute we touched her she started biting and licking herself uncontrollably, she also had arthritis and was in alot of pain, she had even started biting Derek and Kai when they touched her sometimes. So sadly on the 1st Derek and I brought her to the vets, in the morning before Kai left for school he said his goodbye's and begged me to not do it, but as much as we loved her this was the best thing for her. So sadly while kai was at school my mom came and watched Reiko, Derek stayed in the waiting room while I went in the room with her, I cried the minute we took her out of the crate, I cried as I told her that I was so sorry and that I loved her, and just as fast as we had walked into the vets, she was gone, very fast, very peacefully. I have only seen Derek cry that way a handful of times and it broke my heart even more. We cried for about 45 minutes after, even while I picked up Kai and we went to his uncle Darcy's to bury her, we all cried even Kai, it honestly surprised me to see him so sad that she was gone, I didn't expect him to take it so hard, I guess he really is growing up. We meant to wait a while to get another cat but the next day we saw a free kittens sign at a farm just outside of town and we fell in love with our Lola.

Lola our new addition to the family..Roger hates her..

I start my last 3 courses in the next few weeks, by the end of the month I will be staying at my bestfriend Tracey's for 2 nights/3 days every week to finish my schooling, I am really looking forward to girl time and finishing my courses so I can do my co-op this fall. I am hoping my marks will be just as good as my other ones cause so far I have a 4.20 GPA! Life has otherwise been good, Kai has been growing up so fast and he starts soccer soon to, unfortunately it seems like I will miss all his practises since I have school the nights they do them, hopefully I can at least watch one of them! We haven't done a whole lot around here other that Reiko's trips to Montreal every few weeks, thankfully we are done til August now. Take Care, here are some more recent pictures!

Look he is standing in his braces!

Look at me, I didn't need a carseat in the airplane this time! I'm such a big boy now!

Daddy and his boys! <3

Kai's first time at the dentist! No Cavities!!

He has one of the best pouts I've ever seen!

Looking not to shabby!

Reiko broke his arm in Montreal 2 weeks ago, but all is good now!

Lola and I

I love my cat - Daisy! R.I.P sweet girl!

Kai and Lola



Kai loves Lola but misses Daisy so much!

me posing away

Reiko couldn't sleep one night so he watched Titani with me for a bit, he loved it!

My big boy and I <3

4 going on 14...

Don't bug me ma, I'm watching Dora!



Leg 2 done!

Look at that beautiful work! Isn't it amazing? I am soo pleased with how straight they were able to make it! I am so excited to see him without the casts in 2 weeks! I saw his right leg the day before his surgery and I kept looking for a bow in the leg while bathing him and it was so beautiful and straight and now a bow in site! Dr. Fassier is an incredible surgeon. This surger is alittle harder on Reiko then the first one though, he sustained 2 femur fractures and 1 tibia fracture in this surgery compared to the 1 tibia fracture in the Right  leg, so he is still on morphine round the clock, I have tried to wean to even 6 hours apart instead of 4 but he ends up hurting pretty bad when I do that. Both his legs are wrapped together right now, they are splinted and then there is  some tape that are holding the legs in a position where the kneeds face the ceiling, the legs aren't really taped together but its still hard to change diapers and such, a pain in the ass really, but it keeps his legs out of the frog position while he heals. So the 29th we head back and the casts will be removed and he will get his KAFO's which are braces that will go up to his thighs then as he gets stronger with standing we will only have them go to the knees, then ankels. They will help him stand and it is crazy to think in a few weeks we will be working on standing for the first time in his life! What an amazing time it will be.Reiko's birthday is in 10 days! In 2 years we have been told he wouldn't make it 4 times if I include the time we were told for 2 months he wouldn't survive birth, he has had 100+ fractures and xrays, been hospitalized 10+ times for pneumonia, had rods put in his legs and 4 surgeries. WOW! we never thought our lives would be like this but I am so happy it is because he is amazing and perfect. Take care everyone.
Jessica

P.S Here is his right leg without the cast! before and after

Reiko's right leg in on top and you can see how bowed it was

Reiko's right leg before surgery, hard to see cause of the foot.

 Reiko's awesome straight leg 2 weeks post op!

Look how straight it is!!! 

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!