My heart is aching today

  Not for me this time, for a friend. We just got back from some more tests in Toronto and everything was great. Today my friends Leila and Eli are taking their sweet little boy, Jakobi for his own cranio surgery. They were lucky to also live near Sickkids Hospital and blessed the same amazing plastic surgeon, Dr. Forrest. I know that everything will be fine in my heart but my head is right back to our surgery day with Fenn. The feelings I know she is feeling, the pain of watching as your baby is taken away and you just have to sit and wait... it's awful. I will be by my phone and thinking of them all day today while this is happening 18 hours away from where I live now. It is so unfair that any parent has to watch their children go through these things and that any child has to endure this. I will be anxiously awaiting the news of Jakobi getting out of surgery and getting snuggled by his mum and dad. I hope the day will pass quickly for them today. Send whatever it is you send, prayers, postive thoughts etc their way for me today please, for strength for the parents and healing for Jakobi. They are a special little family and we love them.


Fenn and Jakobi playing Sept. 2012

Here again...really?

  Everyone keeps telling me how great I'm doing considering and well, today I came to the conclusion I'm not doing ok at all. I'm sick with flu right now, feel beaten down, tired, stressed (wish there was a better word cause this seems overused) overwhelmed, discouraged amongst other things. Today I watched a movie half heartedly, wasn't really watching, but it came to a part where the family pet died and for some reason I just lost control and broke down, I cried for half an hour, I cried for banana bird, I cried for Fenn, I cried for myself and I just cried without really knowing why. I was aware I hadn't cried for a very very long time and it seemed like I just needed to. Now I am left in this weird feeling place. I wish I didn't have to worry about anything but Fenn right now, bills, groceries, getting dressed, making meals, you name it, I don't want to think about it.  I just want to be with Fenn.
  I know people just want to support us right now but its hard to accept help and it makes things feel real when I'm trying to ignore them. I feel like people think Fenn is on his deathbed or something when I see happy, playing, having fun, making us laugh almost all the time. He has come a long way since his first surgeries for sure, he's developing normal, like any normal 2 year old. I knew with his congenital defect there was a chance of things returning and possibilities of more surgeries because I'm one of those people who researches the heck of something. Over the past several months I watched moms from the support group I joined online going back with their kids after they thought they were done with these surgeries and I left the group because I just didn't want to think about it anymore. Since visiting the IWK and finding out about some other issues we didn't know where there (chiari malformation, small ventricles in his brain) now I am forced to consider more seriously what is in our future. To be honest, I just don't know. I'm trying my best to not think about it at all but its hard with all these concerned people around. It's like people are expecting bad news and I don't want to expect bad news, I want to expect a misdiagnosis or at the very least it doesn't need an operation. I can't imagine watching Fenn go through this again.
  All I know is right now I just want to be locked up in my house with no danger of seeing anyone. I realize this is unrealistic but it's how I feel. It's not personal, I just can't be forced to talk about Fenn right now, I just want to enjoy this next week and a half with my baby and with all of us as a family. Mike will be staying in Ontario to find work because he was unable to find work that could support us here, not ideal for Fenn, but it needs to be done.
 I just don't know what to say anymore, my stomach is in knots, my head hurts, I'm sad for my baby, I can't concentrate on anything right now.

Where my head is at....

  I can't stop thinking about Fenn's future, what's in it, is he done with surgeries and complications? There is no way of knowing, when people ask me, and they do often when they hear about his journey I really don't know the answer and that scares me.

  I am part of a 'support' group on facebook for cranio moms, I say 'support' group because really I think the group just makes me more nervous for the future than anything, it isn't really comforting me at all. There are so many moms on there whose kids 2-3-4- years later going back for surgeries when they thought they were finished with Cranio. When I look up photos of cranio children years post op I can still see there is something wrong with them. I can see that their heads still don't look normal and wonder how their families can't see that. Truth is I won't notice either and I doubt I have any friends or family who are going to tell me Fenn doesn't look normal. When I look at photos of him pre op I can see how odd shaped and abnormal his head was but back then I only thought there was something slightly off about the shape. Nope, it was really off, out of the situation I can see that. Maybe it's the same now, I can feel his head has a lot of bumps and ridges but I think with his hair in it's not very noticeable anymore, maybe it is?

  I don't want him to struggle in school because he looks different. If my friends and family aren't telling me you can be sure his classmates will tell him so I really hope he does look normal. Also now a mom has been posting results of a case study of a lot of cranio kids and how they are struggling in school. I feel like maybe this nightmare will never end and I will always have to remember what Fenn has gone through. He may have to go through much more and I don't like that idea at all.
 I can't believe we are still waiting for a MRI at IWK. We have been waiting since last summer. I have no way of knowing if the episodes he has been having are related to his Cranio or not. I'm just so over having to think about this, can't wait for our SickKids appt in May so I can find out if everything is ok. Feel free to give me an honest opinion on whether or not he looks normal with his head shape because I really think I can't tell. I don't think I've seen one photo of anyone else;s cranio kid that looks normal to me.

Nearly one year since Fenn's second surgery

  I've been thinking a lot lately about the past year of my life with my little Fenn. Something I didn't have the ability to do last year when we were going through all his surgeries and hospital visits, thinking only lead to all the thoughts I didn't want to allow myself to entertain. Now that I can think a bit more about it I'm not really sure how I made it through. I am so grateful for how successful the surgeries were, we were lucky to have the head surgeon to preform this new surgery on Fenn. It's scary to know its new, it may or may not work, but we couldn't ask for better results. Fenn is a happy, healthy, imaginative and funny 18 month old, like any other 18 month old that never had to feel the pain he felt. Music to my ears when strangers tell me you would never know he had any problems at all if I didn't tell them. His story is something I like to share, I am so proud of him, I also want to raise awareness about cranio. I am happy to talk someone's ear off if they let me about the struggles and successes. Everyday I kiss Fenn and tell him how much I love him, when I'm at work I miss him incredibly, so much it hurts sometimes. Since having to watch him go through something so awful it's always in the back of my mind that no one knows how long they have with the people they love. I will never forget that. I think I wonder about that more than most people but anyone who has a sick child, family member, friend etc probably wonders as much as I do and hopefully makes the best of every single moment they are blessed with that person they love. I am truly blessed, for every moment I can tell Fenn I love him, sit him on my knee and give him hugs, smell his hair, kiss his cheeks and all the times we laugh and play together. I wish these moments would never end though I know he will grow up and he won't always want to sit on my knee to cuddle. I breathe it all in, I can't explain how much so.
  I am still thankful every day for all the support and love I received during Fenn's journey. It brought me closer to some and further away from others. I want you to know that I do pay it forward, I try to help when I can other families who are struggling. My heart is bigger than it has ever been, if Fenn hadn't grown it by a billion times already everyones support grew it even more.
  I know a lot of you are not close enough anymore to see us so I will post some photos for you of Fenn so you can see how amazing his head is looking compared to last year.

appointment coming soon

  I can't believe 6 months has passed since we stepped foot in Sick Kids Hospital after stepping into it so often for 10 months. This time next week Fenn and I will be in Toronto with daddy hopefully spending some quality time together. Its a short visit..so we need to make the best of it. So far no end in sight for us to be together at this point, makes me sad whenever I think about it. Fenn is accustomed to daily/nightly skype time with daddy and he gets pretty mad when he doesn't get it. It's becoming increasingly obvious to me that he really needs his dad to be around and it's been hard on all of us but unfortunately a necessary evil.
  Fenn is changing so much right now and every day he manages to become sweeter and sweeter which I'm sure all of you new moms can relate. It's a challenge, a blessing, a blast, a laugh, a unexplainable happiness everyday. I am so thankful when I think of last spring/summer/fall it seems like such a distant memory right now but it wasn't that long ago really. His head has healed really well, his hair grows a little strangely around the scar but I don't think it's that noticeable, his head is definitely still mishapen but so much better than it was or would have been if we had not have caught this on time. I have so much to be thankful for. I am really hoping for a positive outcome for  this appointment.  I've read alot of stories of parents taking their cranio kids back for several surgeries. I hope those two surgeries did the trick.

  Well I thought I'd just do a quick update and I will be updating after his appointment too. Send us positive thoughts :)

what a difference a year makes

  Seriously... what a year. I can't believe its been almost 8 months since Fenn's surgery, I can't believe Fenn is about to turn ONE! WOW! As special as having a baby is it feels like every moment is even more special after what he has been through. Every moment I have him is a moment to be thankful and enjoy all the funny little things in life that he brings to me. He is still meeting all his milestones and developing like any other baby. His head is gradually taking a more normal shape and I am finally seeing the effects of the surgery. His hair is growing in so you can hardly even see the scar (though I think its something to be proud of anyway).

  As most of you know we have settled in New Brunswick to be near my family and Fenn loves it. I am still not sure, but I am enjoying my job, even though I am finding it really difficult to remember things like I used to, learn new things and operate on little sleep. Also we moved into a smoke filled noisy apartment and Fenn and I have been sick since we got here. We are moving AGAIN, as tired as I am it's necessary and its not my ideal location but its a cute little house and the landlords seem great. I'm so looking forward to actually be settled somewhere and make it a home. Since Fenn was born this will be the third time we moved, too much!

  We have scheduled Fenn's 6 month check up at Sick Kids for May 10th, it will be an incredibly short visit, 2 days, I think this next appointment will give me even more peace of mind on his recovery. I felt more comfortable with him being looked at every week or two. It's weird but being at Sick Kids now gives me some sort of comfort, I feel safe there.

  Now that I am having time to reflect a bit on everything that has happened I just wanted to say thank you again to all the support we received over the summer and fall, it really made a difference in our lives. When I look at pictures from that time of Fenn I get the shivers, I have no idea how I survived it, but I do know that alot of it had to do with my family and friends. So thank you.

  Well I just wanted to give a quick update since I haven't updated for a long time. I'll try to  update again after his birthday party at the SPCA. So excited!!

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