9 months

Fenn is 9 months now, hard to believe...  He is changing everyday, all in good ways. Everyday I think I can't love him anymore than I do and then I do somehow. Its weird that when I was going through the summer looking at Fenn with the distractions in his head, seeing his head after it was just cut open and with 3 IV's stuck in him and a heart monitor that it was just what I was given, it was normal and I thought not too much of it. I looked at a couple of pictures from that time recently and it gave me shivers and I think I must have been in denial and acting like it wasn't happening (Im sure I've said this a billion times before) but I think I'm amazed when I realize what our family has been through and that somehow we have made it, we are still struggling, but we are trying! This week Fenn looked at his daddy and said 'Hi Dada' and hasnt stopped since, he is so proud of himself, as we are of him. Still not cool with the crawling and trying to walk thing but I think Im ok with that for a bit longer since the tiniest bump to his head seems to give him a great deal of pain. Maybe he realizes this and doesn't want to take risks. It bothers me the he still rubs the sides of his head alot, hard to say why or what is bothering him, I still think its the plates and screws. My friend said her mom had these after surgery and they were irritating. Knowing what an adult thinks is the closest thing I have to knowing what Fenn thinks.
  Fenn has his check up a week ago and everything was good, they checked his optic nerve again and took all the pictures of his head, we don't have to go back for another 6 months now. I am extremely nervous about our move back to New Brunswick because of Fenn's medical issues. Dr.Forrest said there was NO ONE who could see Fenn with these problems in the MARITIMES and I would have to email him with any questions...wow, thats scary. So I am really hoping he is healthy and we don't continue to have problems. It was a comfort being near Sick Kids for so many reason.

 I would like to post a link to the Sick Kids Foundation, they featured Fenn's story here:

http://www.sickkidsfoundation.com/together/stories.aspx

One month until the next appointment

  I figured it was about time to do a little update. Its been two months since Fenn's last surgery, 5 since his first surgery and we are about one month away from his next check up. I'm interested to see what they have to say about his development and if he will improve leaps and bounds this month in regards to crawling and sitting up on his own.
  I think yesterday it really hit me finally what Fenn has gone through and all of the sudden I got this panic and then a calmness realizing it was over. I'm too late to panic! That's good to know! It all seems like a dream now like I'm not even really sure it actually happened. We still run into people asking us what happened to his head (his hair is still growing in so the scar is pretty prominent) and I happily explain about our little Fenn that I am so proud of. I don't mind the questions.
  Back home in Riverview, on one of the very streets I lived on, Warren Ave, a mom went missing about a week ago and she had I think a 1 and 4 year old. They are still trying to arrest the guy but it looks like her abusive ex boyfriend took her, killed her and dumped her in the woods near his house closer to where my parents live now. This has been plaguing me ever since I found out she was missing. I didn't know her but know people who did and the thought that her children will grow up without their mom and now not their dad either (not that he is a prize obviously) is heart breaking. It really got me when I was thinking about her, how she would never get to see her babies again, never give them another bottle, never play with them, hug or kiss them, or tuck them into bed at night. I wonder if these are the things she was thinking about before she died... I don't want to keep thinking about it but I can't seem to stop. I think of Fenn and how much I love him and hope that I have forever with him. When he gets upset or has a bad day, who cares! he is still here and I am still here with him. Every night I go in our room and peek at him sleeping peacefully, is there anything better than that? NOPE!  I hope her family somehow find the strength to move on...
  Sorry if that was a little depressing but I think a little perspective in our lives is always healthy. That old saying 'theres always someone worse off than you' is pretty much true in every situation... Makes it hard to let things bother you when really we all have so much and could have so little.

Onto to more positive things! Last weekend we finally got to go up and visit Mike's aunt and uncle in Southbridge, which was far FAR!!! but so happy we could go. His cousin Nadia is having a baby and we went up for her shower. It was such a beautiful house on a beautiful property with ALOT of birds which I watched most of the day, it was nice to get out of the city, eat someone else's food for a change haha and spend time with family. I made the baby shower cake and got to model characters for the first time. Fenn loves being outside so much so I think we will have to go back in the spring and spend some more time there. (That has nothing to do with the fact they have a hot tub and a wine cellar) lol








So it doesnt look like we are going home for xmas which makes me sad because I really wanted Fenn to meet his great grandparents, cousins and Uncle that he hasnt seen yet. But hopefully we can come home soon, just don't know when.







Picture time:

 

can't even remember

 I just realized I have no idea what the date was of Fenn's last surgery. I could figure it out if I really wanted to just by checking this blog haha but maybe thats a good sign that we are moving on from what happened over the summer. Fenn is doing so well now, his head looks great, he has two teeth in, he has started to work on the things he was doing before his first surgery like rolling over. Sometimes if I dwell on it I am bothered how the surgery has effected his development but I am so proud of him and he is trying so hard now to catch up. He is making lots of sounds and trying to talk to us, finally taking an interest in solid food (this was also do to his surgeries, I think the bottle was comforting and the morphine hurt his tummy so he wasn't interested before), he is holding his own bottle as of a month ago. I am so proud of him. I think he is most behind on the motor skills he would have learned while laying down, his other motor skills are fine. He can sit up by himself for about 5 minutes now before falling over, he never falls far of course because I still behind him. That's the other thing, we can't really let him learn everything on his own that way because we have to protect him from banging his head, not that any mom want their kid to bang their head but it does happen sometimes I'm sure. He still spends alot of time holding and feeling his head where the plates are and I don't know what he thinks about it.

  Since he started holding his own bottle thats freed up a lot of time for us and he takes the little bit left to bed and falls asleep which is great. Before we had to make sure he was asleep before we put him to bed. I really fell like he is making improvements and getting back to some form of normalcy. I'm anxious for his next doctors appointment in December just to see how they think he is developing. Even though the surgeries are over as far as we know for now we still have to keep an eye on his development to make sure there was no brain damage from the swelling. I really don't feel there was because he is so bright and smart but that doesn't mean it won't present itself at a later date, I don't dwell on this. I spend my days teaching him and playing with him and learning and growing with him. Nothing really describes the difference he has made in my life or will continue to make and something about what he has been through, we have been through together, makes him all that more special to me if that was even possible.

  October has been good to us, the first month without visits to the doctor or surgeries or Emergency visits. Visits from some of my favourite people Heidi Horner and Benn Quinn. We drove to see Heidi in Port Hope, just a random place to meet half way between Toronto and Kingston and also got to surprise visit one of my besties here Myles. Turned out to be providence to see him that day and it was good for both of our souls. Had a great dinner with Heids, wish it was longer, much longer but I will take what I can get. I was so glad she finally met Fenn. I'm hoping for just as much of a lovely November and I think we are going to N.B. for xmas, so excited for that.

  On another note I am almost half way to the goal I set for the toy drive but we only have a week or so to go so I'm hoping at the last minute people donate lots of toys! It's exciting watching the pile grow here at home and thinking how happy the kids will be to receive the toys. The plan is for some of the toys to stay at the hospital and some to be given to the kids staying there to take home when they go. Crazy how such a little gesture puts such a big smile on someones face, even the parents. Fenn had no idea when he was given toys at 5 months old but it really made our day to know someone thought of us and cared about us.  I hope this is something I can continue to do with Fenn as he grows up so he always appreciates what they did for him at Sick Kids and learns the importance of caring for other people.

 

3 weeks

  It's been three weeks since the surgery and its going really good and really bad. About 50/50. The really good part is how well his head has healed, its not nearly as raw as last time and we didn't need to clean it as much or often, it closed up quick and we are just waiting for the dissolving stitches to actually dissolve. The bad part is the screaming. There really is no way of knowing what is wrong with Fenn when he screams for hours, I try to base it on is he rubbing and grabbing at his head or is he tugging his ears or grinding his mouth on things. He has another tooth coming in but he is also breaking out in cold sweats every night without a fever and continuously rubbing his head. Last night was one of the worst, he slept a total of 2 hours and we spent it in the back room downstairs because he was screaming so loud. I coudn't do ANYTHING to console him. Eventually he fell asleep on my chest but as soon as I tried to put him to sleep beside me he would scream so up on my chest again he would go. Needless to say I am exhausted and out of ideas. I haven't slept for a few days now, he refuses to take most of his naps during the day and loses it at night. Morphine doesn't even seem to touch he and he is on a regimen of tylonel and advil, cal mag and pro biotics.

  We have all been sick here for over a week now with a nasty cold, I got it worse, I guess because of the sleep I've been deprived of.  Somehow Mike always  seems to get atleast 10 hours of sleep even on the nights where I get 1 hour.  I've learned life is easier if I let him sleep and if I'm going to be exhausted I can't deal with the consequences of sleep deprived Mike. When hes tired he just doesn't have patience for Fenn either. It's hard sometimes but I guess it takes alot for me to feel frustrated with Fenn, I just have to think of what he has been through and is still going through with the plates in his head. I'm really hoping its not a year of pain ahead for us with him until these plates dissolve. Mike is really feeling like he hasn't been given a chance to enjoy having a 'normal' baby. I think it just makes him that much more special.
 
 I might be working part time if it works out to make sense financially, I have a little interview tomorrow but I have worked for the company before so it would be nice to have a familiar environment and easy transition back into the workplace.

  Also, as most of you know... I am hosting a toy drive for 8C the burns and plastic ward where we stayed at Sickkids. If you can help out please do. Here's how to help and also, the commission I make will be given back in toys so really you are giving more than you thinks! I would like to reach 100 toys in the next couple of weeks..

There are strict guidelines for donating to Sick Kids so I'm gonn...a help you out, please purchase any toy for any age from here:




http://www.discoverytoyslink.com/esuite/home/ksoconnor



You can purchase from the online catalogue and pay by credit card. Alternatively you can order from me in person and pay cash or credit card.



IMPORTANT: When ordering online please have it shipped to me so I can deliver the toys unless you personally want to drop the toys off to me in Toronto. My address is : 569 Ossington Ave.

Toronto, ON

M6G 3T4

(Delivery to Back Door)



There are toys at many different price ranges..donate one or donate alot. Whatever you can do is appreciated...



SOOOOO....



GO here:



http://www.discoverytoyslink.com/esuite/home/ksoconnor



and place an order, dont forget to have it delivered to me for your convenience and ESPECIALLY if you don't live in Toronto ;) THANK YOU!

Now some pics of the last few weeks!

Second Surgery and other things...

  Well I had an excellent start (though brief) to the week. My mom is here and the day after she arrived we drove down to Point Pelee for Mike's birthday with Fenn. Some might argue it was more of a trip for me due to the fall bird migration and monarch migration and they might be right! However, I feel well deserved after the summer I've had. Even though its a 4 hour drive each way I think we all appreciated the trip, the time in nature and on the beach exploring the National Park which is now my favourite. Fenn was a complete angel all the way there and for the entire day, loving being outside with his Granny, Mommy and Daddy. We got some amazing pictures and I spotted a couple more birds for my life list: a rose-breasted nuthatch (which I've been dying to see), a black and white warbler, Eastern Kingbird and a bunch of Semi-palmated Sandpipers.
 
Unfortunately the way home wasn't quite as pleasant. Fenn started crying so we pulled over on a country road and I took him out because I thought he needed to burp after having his bottle. That's when I noticed a yellowy pussy oozing coming from the distraction site that had gotten infected for the second time. He had been on anti biotics for a couple days already after calling in to the hospital about it but we were finding impossible to get him to swallow any of it. So in the car, 3 hours from Toronto, I called in to Sickkids to talk to the plastics doctor on call and he told us when we got home at 11pm we would need to come in. Luckily, I had started packing the suitcase for the hospital before we left in the morning, just in case. I guess moms just get those feelings... So we arrive home, I finish packing and we go in and they decide to admit Fenn to 8C until his surgery, so instead of one night, we end up staying 4 nights. Ugh. Many bloodtests and IV's pulled out later Fenn has his surgery on Tuesday, 2 hours late. Because of this he ended up not eating for 10 hours and it was hell. He screamed and cried and looked in my eyes like I was murdering him. It was so painful. My mom was in the corner crying and I was doing everything I could to keep back tears. Finally they took him in, this time much harder I guess because the first surgery he went in laughing and smiling and this time he didn't. The surgery seemed to go on forever and both Mike and I felt more nervous this time for some reason but eventually we go the news we wanted, Fenn was doing fine. I was very happy to have my bestest friend Sarah sit with us through part of the surgery. What was even longer was waiting until we could see him in recovery. He also seemed more swollen this time. I never want to see my baby laying limp in a hospital bed again. I've told Fenn this several times so he better comply!

  The evenings were very difficult for me because I was alone, Mike went home to sleep because there just isn't room there and its very uncomfortable. Also with all of the beeping and people coming in and out and Fenn being in pain it's pretty hard to get any sleep. When Fenn was hungry I would pick him up in one arm and pull the IV pole in the other hand, wheel him down to the kitchen and boil water, fill the bottles with the other hand. Being a mom has definately made me better at multi tasking. Then I would have to wait for my mom or Mike to arrive in the morning before I could shower or eat and this was always after the doctors visited at 7:00-8:00 am so I felt pretty gross. I would usually fall asleep around 3:00-4:00am after I could finally get Fenn off to sleep and then be woken up a few hours later, some nights I didn't even get that much sleep because after the surgery he was moaning alot and I couldn't leave his side because I was worried. Also we had the pleasure (sarcasm) of the drainage tubes this time and I found it harder to look at him with the fluids and blood draining from his head into these clear containers.

  We were very lucky to have one of Fenn's favourite nurses, Stephen, for THREE whole days! He's so good with babies and Fenn loves him. This time we had a much more positive experience with the nurses all round though, honourable mentions go to Trinette, Kimie and Simone. The last time one bad nurse ruined the experience. Everyone made Fenn comfortable and played with him. I think he actually likes the hospital because of all of the extra attention. Susy came to visit us from Oshawa and brought us awesome gifts of formula and diapers THANK YOU! and also, from our mom and baby group, Lisa and August stopped by for a quick hello after an appointment. It was nice to see people other than nurses!

  Overall, Fenn has had less pain medication this time and is recovering well. I think his biggest issue is wanting to have Granny in eyesight at ALL times. The day we brought him home he played and played and laughed and laughed and gave us the biggest smiles of all time. He was clearly happy to be home. Jackie came by and ordered us dinner and had some play time with Fenn too and that was great. I'm so glad I have such awesome people around us who love us and care for us.

Ok, wanted to share that update, no doubt I've left loads out but I'm exhausted and can write no more! I will post some pictures below as usual and sometime in the near future I will post before and after pictures. Please continue to pray or send positive thoughts, whatever it is you do for us as Fenn recovers.

 

why does it always get worse

  I can't understand it. Just when I think we've been through enough more happens. Maybe I'm feeling especially negative right now because I had a terrible day to start out with and it got continually worse. I think I have an ear infection and the whole side of my head hurts so that could be making me grumpy too, I have a doctors appointment tomorrow to see what is going on.
  The car broke down while Mike was going to work tonight so he called CAA but they couldn't start it, they think the starter is gone. The car was given to us by Mike's parents a few years ago, not to complain about something that was free and we needed it, but it happens to be the worst year for Malibu's and according to my dad who sold them one of the worst cars (for make and year) ever made in history. For a free car I believe we have sunk (or should say my parents sunk) over $3000 in it since we have had it and its not even worth half of that. But since we cant afford a new car or a new old car we keep sinking the money in. We can't be without a car for the winter, not even for the fall really with all of Fenn's appointments. Now I am wondering how we will lug all of our stuff and Fenn to the hospital for his operation on Tuesday. I'm not being dramatic this has been the worst year of my life, now extending past a year and one thing after another after another after another keeps going wrong for us and I don't understand why we are 'those people' who just can't catch a break or get ahead.
  Not just here but things have continued to go wrong at the house in St.Catharines too and because we are landlord we have to put the tenants first which means we are last yet again. So instead of fixing the car we will be fixing the furnace there. We were forced to rent the house when the mortgage company imposed a $10,000 penalty for selling before the first 5 years were up, then we had to rent the house for less then it cost to keep it, let alone fix things. We have two more years of that left.
  I want to concentrate on Fenn right now, that's all I ever wanted. I have been robbed of my time with him essentially because of all the stress. I couldn't enjoy my pregnancy and with out EI I couldn't relax knowing we had some maternity leave pay coming in which puts extra stress on Mike. I resent our government more then words could ever express for the extra stress this has caused when I just want to worry about Fenn's health and getting him well again.
  I've already said more than I should, but I needed to get this out. Hoping the universe will back the .... off and let us be already.

ugh

I have this sick feeling again... I love Fenn so much, I wish he didn't have to go through this. I just want it to be over already and be able to move on.

One Week...Again

  The next couple weeks are going to be busy and plagued with doctors appointments again. We have a follow up on Wednesday at Sickkids and Thursday with anesthetics and another appt not yet booked with the pediatrician for pre op. We are only one week away from Fenn's next surgery. I thought it would be easier this time but it actually feels harder. I can't help but being scared knowing what he has to go through. This time they will take the screws and plates out and put dissolving plates in. We are really really hoping this is the last surgery he needs, however, I don't feel it went quite as planned. There are parts where his head hasn't appeared to make as much progress as the other and I don't know if this means anything or not. I have no idea what the next plan of action would be at that point. I know they said if it wasn't successful they would preform the more dangerous surgery, but I think it was successful enough to not do that. But heck, I'm not a plastic surgeon so I guess I don't really have any idea.

  Fenn had a terrible weekend, the last month or two has been pretty terrible anyway, it seems to get worse though. The older he gets the more he realizes the screws are in his head and today they are looking infected again. Because of this I find it increasingly harder to get any time to myself let alone time with any friends. Sadly, my only connection to the outside world is online. I did however squeeze in a surprise visit from my lovely and dear friend Myles last week. He took me for brunch, just me on my own, and it was so good to get out and have a conversation in my regular pitch of voice haha! We are back on quarantine now so we will be limiting visitors to almost zero until the surgery. My mom arrives on Saturday and for that we cannot wait. Fenn listens to her on the phone all the time and he gets so excited.

  Mike is out of work again in another month, the show he is working on is ending and there doesn't, as of yet, appear to be any more work. I have started an at home business with Discovery Toys to try and make up some of the difference but I doubt it will be a big enough difference... check it out here if you like www.discoverytoyslink.com/ksoconnor and if you are interested in hosting a party or becoming a rep let me know. Failing that it looks like I will be returning to work shortly after Fenn's surgery and Mike will be staying home and that's not ideal for many reasons.

  Fenn's crying, I'm out!

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!