too much sleep??

  It's been an eventful week, to me that means we had one or two visitors haha! Anything on top of normal everyday life with Fenn right now is an accomplishment. My cousin Kerry, her two kids and her boyfriend came to visit me yesterday for a few hours. Usually, during the time they were here Fenn would be screaming on most nights and grabbing at his head but he was distracted and pretty happy. As soon as they left he started crying...Mike came home from work and I realized we were in for a long night, he screamed (shrill screaming) until about midnight so we had to give him morphine and I am SO trying to get him off of morphine. He finally passed out and slept for 10 hours, he got up for 2 and slept for 4 more, got up for 2 and is sleeping again now. I would think maybe he is just overtired, from what I am not sure, but yesterday I also noticed a huge gap inbetween his two pieces of skull that was cut during surgery. I am unsure if this is normal, if the screws in his head are supposed to move it apart like that, if this is what is hurting him. I just don't know. Several times in the past two days I have almost called Sickkids but I don't want them to think I am some crazy overprotective mom and its kind of hard to explain what I feel on his head which means they would tell me to come in and that equals another 16 hours waiting for different doctors in the ER and possibly being admitted again and I admit it, I'm tired. I don't know if I could handle it right now. I'm hoping it settles down on its on, today was the last day he is on antibiotics after his head getting infected around the distraction site and I know that was making him very sick to his stomach so hopefully things will get back to normal on their own. He has been throwing up alot again. To be honest, I really don't feel hopeful anymore that this surgery has worked, his head shape has changed somewhat but doesn't look normal to me still. I also think that one side of his skull isn't separating like it is supposed to. I pray I am wrong at this point, I don't want any extra surgeries to happen.

  I also saved an injured raccoon this week (see my week has been exciting) There was a raccoon hanging out outside our living room window and he has an injured hind leg so I called a charity called Toronto Wildlife and they came and captured him to take him to their rehabilitation centre. Fenn and I watched it all go down, it was pretty exciting.

  Yesterday I was having strange body buzz feelings all over and blurry vision coming and going, sharp pains in my shoulders and chest and feeling just weird really. I couldn't figure it out and was telling Mike about it last night then I remembered I slipped in the shower really bad in the morning and hit pretty much every part of my body on the way down. I don't remember if I hit my head or not. Today I can hardly sit on my ass it hurts so much, its one of those bruises thats so bad it takes like 3 days to appear. I also hurt my two shoulders, both of my hips and my hand.  It all made sense after I remembered that haha! Sometimes I wonder about myself. Mike says I am the clumsiest person he knows. I might be the clumsiest person I know too! I guess I officially need an old lady anti slip mat in the bathroom.

  Heres some pics I guess I will spare you the picture of my bruised ass.
 

 Before I forget we are back on quarantine again soon to make sure Fenn isn't exposed to illnesses before his surgery. If you want to get in for a visit contact me, I can't make any promises but I can try. Please understand everything happens on short notice now though so if you are a short notice kind of person then it just might work out. It has proven too difficult in the past couple of months to plan anything in advance as Fenn is pretty unreliable, we never know if its a good day or not until we start it and sometimes we don't know if its a good hour or not!

Happy 6 Months Fenn boy!

  I can't believe it! We have reached 6 months already. Where does the time go? I guess this is a question that every mother asks themselves on a regular basis. Fenn has been having a bit of a rough day pain wise but we received our surgery date today (some birthday present right?) we are going back to Sickkids on September 14th and the surgery is scheduled for 1:00pm. I couldn't be more happy to get the distractions and plates taken out of his head and move forward as hopefully a normal family without so many medical issues. I know we will still be visiting the hospital alot in the beginning and probably for the first year so its not over yet, but it will be better, just better.

  I am so proud of my little boy for going through everything he has been through and still managing to put a smile on his face and on the face of everyone he meets. He really is brave and strong and handsome. Here are some photos taken of Fenn today in honour of his 1/2 birthday!

pretty special

  Well I have a moment to myself so I decided to write a little bit. I've been thinking alot lately how special my little boy is. I stare at him in amazement all the time and I just can't believe everything he has been through and still has to go through and I know he will do it with a smile on his face. This past week was pretty hard because we didn't think we would have to stay in the hospital again until the surgery. Fenn isn't taking his antibiotics properly and now it looks like the other side might be getting infected which means another trip to the hospital if it doesn't clear up. Also the antibiotics are continuing to make him sick to his stomach and constipated. I have doubled up his daily dose of calcium magnesium which seems to be helping him use the bathroom but also makes it very very runny which means he has been going through ALOT of clothes. I hate seeing him upset because I know it means he is sick. He is naturally such a good natured and happy baby.  He doesn't even seem like a baby anymore though I guess because he has been through so much for such a little guy it makes him seem more wise or something. Wiser than me! We are still waiting to hear when the date of the next surgery is hopefully everything falls into place for my mom to be able to be here for that. 

  I don't know what I was thinking. I'm way too tired to think or write right now. I just wanted to say Fenn is an amazing baby and I love him :)

and then it was quiet

  Well, I was hoping to not have to update this as often, especially not until the next surgery. It has been another hard week this week. On Tuesday night I noticed that Fenn's head was really swollen around the distraction on the right side, it was red and oozing. Mike was working so I made a call to the plastic surgeon on call at Sickkids to see if I could wait until the next morning to see our pediatrician or Dr.Forrest. He advised me to come to the ER to look at him so at 8pm I got ready and walked over with Fenn, about an hour long walk. The walk was actually nice, the weather was good and Fenn seemed to enjoy it, he loves the outdoors. We got there and were seen fairly quickly in the beginning since we had called ahead and because he needed to be seen for something very specific. Everyone is always fascinated with them because they never see babies with this device in the ER. Fenn loves the extra attention and charms them with his smiles of course. After that though things went quite slowly, I thought we would come in get some anti biotics to take home and then be home before Mike but he ended up meeting us there around midnight. Then we were told he was being admitted back to 8c (plastics and burn unit) and being put on IV. Without fail everytime Fenn fell asleep they came in to wake him up and Im sure its not nice being woken up to needles being poked in you. They did more blood tests and swabs of the discharge from his head then put an IV in. Over the course of his two night stay he managed to kick it out twice.
  Around 3am they moved us up to the ward and Mike went home and I stayed. The rooms are private and fairly big but there is only one narrow, very uncomfortable bench to sleep on and I figured one of us needed to sleep. I fell asleep around 4:30 am and got woken up by all the doctors and nurses taking a look at Fenn around 8am. I don't remember anything they said, I hardly remember them being there and I was still lying down under a blanket. I did hear we would be staying another night so Fenn could get more antibiotics by IV. Thankfully my lovely friend Amanda offered to stop in so I could get something to eat around noon, that was my dinner from the night before and my breakfast AND lunch. Mike missed more work again and again we had to pay out for food and parking which we hadnt planned for. These little trips to the hospital end up costing around $200. 
  That night I was supposed to meet up with my cousin Darren visiting from N.B. and my cousin Sandi who just moved here with her husband, baby and one on the way from Vancouver. They came to visit us in the hospital instead and it was great to see some family. Fenn loves company so he was pretty thrilled.
   ALSO I feel it is important to mention that when I went to the convenience store by Sickkids that night I saw Adamo, the guy from Degrassi the Next Generation that plays Marco...hahaha (important right?) I was a teeny bit star struck and trying to get out of there as soon as possible because my underwear were falling off. Anyone who knows me after having the baby I havent been able to buy clothes and my maternity underwear lets say 'arent holding up' these days. lol  Not so funny when you are in line with a bunch of people behind you, one of them being famous.
  Back to Fenn... so we had a pretty good stay this time, all the nurses were awesome, the nurse we didnt like last time was there but I think she must have asked to not take care of us lol, fine with me! Fenn just put on his best smiles and giggles and made everyone love him. Im starting to think that Dr.Forrest brings in 10 people with him everytime just to show him off ;) Dr.Forrest thinks that one of the distractions has come disconnected from Fenn's skull so he wants to move the surgery up to the beginning of September now versus the end.
  We got home with antibiotics and I slept forever which felt amazing. First I had a mini breakdown though and cried because I am so tired. I think its all starting to hit me now and adrenaline only lasts so long.
  Thank you for all the kind messages while we were at the hospital. Thank you everyone for your continued support and sorry for all the plans we keep having to break with everyone too. Life is too unpredicatable at the moment I guess. Im really needing a vacation at this point but thats not going to happen. So please continue to pray, send positive thoughts our way because we need them. We are so exhausted and its putting on a strain on our lives.
  Now to the good part, new pictures!

update from appointments today

  Just quickly, we had two appointments at Sickkids today, one with Dr. Forrest (plastic surgeon) and the other with Dr. Buncic (opthamologist). Both went well, optic nerve is normal, Fenn is likely short sighted but not by alot according to Dr. Buncic and we don't need to see him again until next year. Dr. Forrest said his incision looked great and then picked a HUGE scab off Fenn's incision leaving a gaping raw hole??!!! Bizarre... lol Anyway, he told us again that all the nurses came into the office saying there was a really cute baby in the waiting room and he said OH! Fenn must be here! hehe! Always makes a mommy proud ;) We are going to see him in a months time so we are getting a break from our weekly check ups which comes a great time since we used our last $16 for parking. They are going to schedule our appointment for his next surgery sometime at the end of September/beginning of October.
  While we were waiting for the crazy eyedrops to take effect at the eye doctors we passed the sickkids library and someone was reading books to the kids and fun voices so we took Fenn in. He sat and intently watched as a guy read these stories to the kids with lots of enthusiasm. Then he would watch the kids watching the guy reading the books...then watch the guy again. It was really cute.

things of the past week, things of the future week

  We have had a hard week or so here at the house. I think I need to speak to the doctor about controlling Fenn's pain still. He has hours a day where he screams and its not a normal baby cry, its a pain cry. I hate it. Nothing calms him down...Im glad Heidi and Tim are here on their way to N.B. there is something Fenn likes about people besides his parents haha He very social and less likely to cry for other people. But also, when he is crying alot its better to play pass the baby with 4 people because after hours of screaming everyone is kind of at wit's end. I hate not being able to help Fenn.
  I love how the doctors insist that the babies feel no pain. I want to know how that is possible when he has metal sticking in his head with big metal plates and his skull is moving everyday. Maybe they should try it out themselves then and see. What they mean is because the babies are so young and have no way of communicating with us clearly that there is no proof that is what is causing the pain. They just say 'they could be crying for a number of reasons'...duh.
  When hes not crying hes being the most adorable baby on the planet. I love his smiles and laughs and now his tongue tricks! He loves having his feet 'eaten' and even being kissed on the belly makes him crack up. Hes got such a great personality (maybe because hes alot like me haha) but he has alot of Mike in him too, like how he moves his eyebrows so weirdly all the time. (great trait from your dad Fenn) I love how he has this so serious inquisitive look and he studies things and is always looking around and trying to figure things out. I love how he pooped through his clothes like 5 times this week...oh wait...not I dont love that!
  Tomorrow we have two appointments at sickkids, plastic surgeon and opthamologist and Thursday we have a visitor from N.B., my old fiddling friend Kim.

  Ok heres a few more pictures!