Our Unbreakable Spirit: Opps, I forgot my blog!

Ok I am back after almost 10 days!! So much to tell too!

Last week Reiko had some appointments on Tuesday, He had a respirologist and orthopeadic dr's appt, it turned into a crazy and long day. We brought Kai along not knowing what was in store. First we get there and find out that apparently I was talking to a ghost last week when we made the respirologist appt because the lady said we never talked and we never made an appt, even though while I was on the phone with her Derek was writing down the date and time! But thankfully they were able to fit us in...2 hours later, 10 minutes before our next appt, thank goodness his orthopeadic doctor was down the hall!! So I told the respirologist I wanted to know why he is getting pneumonia every 2 weeks, so she is setting him up with a sleep study to check for sleep apnea and a swallow study to see if he is swallowing his food down into his lungs, which would cause the chronic pneumonia, we are assuming it is the asperating that is causing it, if it is I don't know what step we take next. Then we ran down the hall about 15 minutes late to our next appt, and thank goodess she is a wonderful lady! I LOVE his ortho doctor! We met one in the summer and he was awful with Reiko, and was not careful with him and just generally seemed to not care about him, but Dr. Bartley is amazing! She has dealt with OI before and she was so understanding, she held him so carefully and answered all my questions with him, she said I could call her anytime I need to and she didn't fuss about getting him other pain meds. She was amazing! Then she set us up with the fracture people and got us a bag of splinting material, so we are stocked for a while, I hope along time! So then we went back to the respirology area where they did a finger poke on Reiko to check his awake C02 levels, and then we had Reiko's port(a Iv line straight in his chest) flushed....and that is when the fun started. I noticed a hole in his chest at the port when she cleaned the area, a hole where I could touch his port in his body....So after they flushed his port which made the hole bigger, we waited and waited for a doctor to come see us, when we were told they would not come see us and we were to go to the Emerg, that was after waiting for 2 hours, by that time we had been at the hospital 7 hours!! WITH A 3 YEAR OLD!! A VERY BORED 3 YEAR OLD!! So we go to downstairs to Emerg and they get us into a room, thankfully with a TV for Kai and we waited another 2 hours when the doctor that refused to see us upstairs came in to discuss getting him a surgery for a new port to be installed before this one gives him a deadly infection....GREAT! So he says ok Thursday we will call you in and he will get the surgery that night or that weekend...so we go home, nervous as all hell that this port will get infected, checking his temperature like crazy incase he gets any fever. By the way, Kai was actually amazing the whole day, the only time he got grumpy was when we were leaving to go home and he couldn't play in the Castle Room anymore! He was just awesome! Especially for a 11 hour day! So thursday comes and I call right at 9am and the receptionist had no idea what I was talking about, but she finally got a hold of him about 5 hours later, so he is set up for the surgery and once the nurses get him a room she will call me back, another 2 hours go by and she finally calls back to tell me the surgery is now being rescheduled until next thursday since there were no beds available! THANKS! She said as long as he doesn't get a fever and the hole doesn't get wet we should be fine..so now we wait until thursday. Then thursday night the ER doctor that saw us calles at 10pm thinking that Reiko had a bacterial infection, but we informed him that they never took a urine sample from him so it couldn't be him, THANK GOD!! So what a fun few days those were. So eating was off this week, I didn't really even try, I was stressed, but I worked out 4 days this week, mon, wed, thurs and today. I am back on track today though, eating within my points again. But Derek hasn't helped much since he has made 2 coconut cream pies (1 we will eat tomorrow at a birthday party) from scratch and they are amazing! And he also made a Mocha Dutch Log as well for the birthday tomorrow. He is an awesome Baker! We had a really nice day together today, Kai has been at Oma's since friday night and we watched How I met your mother while cooking and that kinda stuff. We had a good day of just relaxing with Reiko. Although I think I may have rehurt Reiko's femur when we wanted to get him in his bumbo chair for some sitting, it hurt him so we got him out right away and now his femur is sensitive again. So Codiene and Advil to the rescue! He has already been up a few times tonight so I am expecting a long night, but thats ok, thats life. I cannot wait to see Kai tomorrow! He called tonight to say he misses us and loves us, and we were joking about how he is stealing my bed, and he says no mama its my bed! and we were joking and all of a sudden he started crying hysterically because he thought I told him he couldn't sleep with me anymore, lol, it was really adorable and once Oma calmed him down he was back to saying ove you mama! lol. He is perfect...Both my boys are! I such a lucky mama! OHHH OHHH I ALMOST FORGOT!! GOOD NEWS! Reiko is now officially done with his zolendronate treatment and starts pamidronate in february!! WHOOOHOOO!! Which also means we will be able to get his treatments in London instead of Montreal!! This is awesome!! Hopefully this is the beginning of something wonderful for Reiko. Ok its wayyyyy past my bedtime. Night Night!

P.S, thank you for the comments ladies, I don't know how to respond to them indivually, but I wanted to say Thank You for reading my blog! xoxox