Ok, time to say how I really feel

First of all according to the sick kids website metopic happens 1 in 15,000 births with boy to girls 3:1, so it was pretty rare that Fiona was born with it. Now it's rare that she isn't healed properly. It's not fair....plain and simple. it actually fucking sucks...sorry for the language, but I'm upset, pissed off, sad, angry and I feel guilty for what my little girl is going to go through in the next few months. I know that it's not as serious as the first surgery blah, blah, blah I swear if someone says that to me again I think I'll snap. This will be her 3rd time in an O.R, she just turned 4.
And I know I should feel happy that she is healthy and it's fixable, but PLEASE let me have my pity party, let me feel sorry for our family just for a while. PLEASE!

It's been a while

Boy, it's been a while since I've blogged. Fiona is now 4 years old and in Jr kindergarten. She has to wear a helmet at school because she still has soft spots from the surgery. She is now 3 years and 3 months post op. We went to see Dr Phillips on Dec 3rd. I have had concerns for the whole year and he confirmed my worst fear...another surgery! The way she is healing is a mystery to him....of course it is, she's MY daughter.

She still has a number of soft spots on her skull, she also has had some bone resorption near her eye. They are going to make custom made titanium plates for the soft spots and a custom made implant near her eye. It is made with a material called "PEEK". Dr Phillips is also going to shave down the bone on her forehead where it grew too thick and is also going to make the scar thinner, it has gotten pretty wide over the years.

It's going to be a 3 hour operation and a 2-3 night stay....she is going to have a drain tube again.

She is having a CT done in the next couple of months under GA because there is no way that she would lay still while the CT is happening.

I wish I never heard the word cranio.

Got the point

I have decided that Fiona's head may not be the perfect shape right now, but I'm throwing in the towel for now. I'm going to stop taking pictures of her head, stop obsessing about it. Dr. Phillips has told me twice that she looks perfect, I'm not sure why I didn't listen to him. If she needs fill in's done in the future we will deal with it then, so for now I will enjoy my children, and not worry about cranio.

Fiona's surgery

Awwww....it's over and she did great. We got to the hospital at 1pm, we saw a nurse, she happened to be one of the nurses that took care of her when she her metopic surgery. We were sent down to the room where you wait for them to take her to the O.R. When we got in there, they told me that Fiona's surgery was on hold and that it maybe cancelled. I was very upset. I went down to get a bit to eat for 10 minutes, when I got back Keri told me that everything is OK and that the surgery was on. Soon after that Dr. Phillips came in to talk to us, I love that man, he is so caring, he kept saying Fiona looked great and that she was so pretty. Then the Anesthesiologist came in, they were super nice, they told me that I could bring Fiona to the O.R. I got dressed up in this crazy white jump suite. I kept telling Fiona I was a big marsh mellow. After giving Daddy kisses we walked down with the nurse to the O.R. They put the pulse thing on her toe and she started to get upset, then they put the mask on her, I rubbed her arm and was talking to her, when she was almost asleep I had to leave. I teared up a bit but I didn't cry, I did cry when another little boy, he was about 8 started crying when he was taken into the OR. I'm such a suck.
Fiona was in the O.R for about 1 hour and 30 minutes. We got to see her around 5:30. When we got into recovery, she was sitting up with the nurse, I held her right away, she was upset about the IV, her eye was swollen and red. They gave her some apple juice and 2 freezies, then we got to go home.
She has 4 dissolvable stitches and a nasty black eye. We are heading to Sick Kids Sept 12 for a follow up. I'm also meeting Lilah's mom Christina's Mom from cranio kids, which will be nice. Her peanut just had surgery yesterday.

2 Weeks

UGH....My Fiona bug is having her cyst removal surgery in 2 weeks, the worst part is going to be handing her over. She hardly goes to anyone yet alone a stranger. She is going to freak out.
I'm not sure if I can go in with her or not. I think that I may call and find out.
She has been rubbing her eye a lot lately and the cyst has gotten bigger.

2 more weeks....I can do this, I NEVER thought that my baby would be inside an OR ever again!!!

An Ear Infection

I have never been so happy to hear "It's an ear infection". Awwww......Fiona went to our doctor's on Thursday, I can't believe how much see can't stand being around doctor's, who can blame her.
She is on antibiotics for 5 days. I'm so happy that's all it is.

3 weeks is her cyst removal surgery....I'm not handling it very well, I'm so anxious all the time, my thoughts are erratic. I'm very scared.

I feel horrible

I hate the fact that all I do is worry all the time, doesn't matter what it's about...money, kids, job, husband, family, weight, health, future, future surgeries, panic attacks, anxiety, depression. EVERYTHING.
I HATE THIS!!!!!!!!!!!!!!!! Fiona has had a low grade fever for a couple of days but in my head her cyst is cancer....how ridiculous is that? She has a cyst and that's it. I feel like crying all the time. I hate this. She is probably teething or has a mild infection, she is going to see Dr. Molnar on Wednesday.

Will the worrying stop

I'm once again worried about the shape of Fiona's head. I guess I just figured that her head would look more round by this point, she had a ridge on the left side and it feels uneven.

I don't know what is normal and what is not, it's not like we have ever been through this before. Maybe I'm just being obessive about her head shape. I notice now I stare at people's heads. I can now tell if a child has a cranio issue....it's so crazy. I wish the worrying would go away.

The Past Few Dyas

Keri and I went to Niagara Falls for the night on Sunday....it was GREAT, it's what we needed, we needed to reconnect, and that's what we did. We have go through so much over the past year....Fiona's surgery, all the issues with Noah and of course the passing of his Mother, we both went through depression, I was in a major depression. I'm better now. We are on the same page again and we weren't for the longest time. I didn't know if we were going to survive or not, we both take our vows seriously and we wanted to work at it.

I got an email from Alan at Sick Kids today. Fiona's surgery is on September 4th at 3:00pm. She has to fast from midnight on....it's going to be a long cranky day for all of us.
Although she is only having a cyst remove and it's a very minor surgery....I'm a mess, all the feeling are coming back from the first surgery, it's crazy....her cranio surgery was almost a year ago already (Sept 26th) time flies. I can't believe my baby girl has to go through another surgery again....she's not even 2 yet :(

Scan Results

Well we have good news and bad news, the bad news in that Fiona is having surgery next month to remove the cyst. It will be day surgery, she’ll have a black eye and it will be swollen.The good news in that Dr. Phillips thinks everything is OK, he said that he has NEVER seen a scan like Fiona’s before, he said that her right side is growing new bone super fast and that the left is growing and healing very slow. He said that she’ll probably need touch up’s in the future but for now he is going to monitor the situation and see her every 6 months instead of every year, he said that the scan looks a lot worse then how she looks in person. He said that the rest of her head is healing perfectly. So all in all we feel better although I’m not looking forward to surgery again next month.
Some people go through life not experiencing one surgery, this is will Fiona's second, although it's only day surgery, it will be just as tough handing her over to them again. :(

Had the scan

Yesterday was very tough, probably more on me then Fiona. They put the numbing cream on the one hand, I think it worked a bit not 100%. They only took one poke and the IV was in. She was crying the whole time we were waiting for the nurse to put the actual medicine in the IV. She finally put in the stuff to relax her, it was hilarious, after about 5 seconds she looked up at me with this funny grin on her face...she was acting drunk. So we carried her into the CT room, put her on the bed, they thought that she maybe able to do it with just the relaxing medicine but she started crying and kicking, so they put the sleeping stuff in the IV and about 5 minutes later she was out. They did a 3D scan with dye. We will find out the results on Friday. She was so wobbly all day and VERY cranky...I couldn't put her down because she would fall, when I sat her on the floor she tipped over. They said that the sedation will last 24 hours.
She woke up this morning and is acting like herself. I can't believe the effects of that medicine.
I'm so glad that we don't have to wait too long for the results.

Monday

This Saturday Noah and I are going to Niagara Falls for the night, I'm really looking forward to having a Mommy and Noah day, I really think he needs to spend some one on one time with me.

I got an email from Alan today, Fiona's CT scan is booked for Monday, we have to be at Sick Kids at 9:30 am, the scan is at 10:30. I'm so nervous, I hope that they only need to poke her once to get the IV in. We go back on Friday to get the results, I know that something isn't right with the left side.

I'm praying that she doesn't need anymore surgery. I know that she does have some kind of cyst on her left eye, I don't know if it's from the plates and hardware dissolving. I guess we will find everything out next Friday :(

Starting to panic

I've been taking pictures of Fiona's head every month to watch the transformation from the surgery. I've emailed them pictures before when I was worried and they have always emailed me back saying everything was OK. Our last appointment was in April, we were told that we would not have to go back.
On Friday I emailed a picture of Fiona's head to Alan at Sick Kids, I was a bit concerned because her left side is really flat compared to the right, I got an email back saying that they want her to go for a CT scan in which she will have to be sedated again. I was NEVER expecting that answer in the email. They said that it looks like she had some bone resorption which I still don't understand.
I felt her head, the right orbital bone looks and feels great, the left feels like it sunk in and she has some soft spots around it.
I'm anxiously waiting for them to call me with the scan date, they said that they will try to get it done within the next 2 weeks if not it won't be until August because Dr. Phillips is off the last 2 weeks of July.
I'm so nervous, I can't imagine facing another surgery.

Career Change

Well Keri is going for it, he is going to change careers. I'm very happy for him but I'm also jealous, he is going to school, he is bettering his life and I'm stuck. We both can't afford to do it, plus I have to take care of the kids. I just always seem to be on the back burner, I guess that's my own fault. Everyone is losing jobs because of gas prices and the economy. I make crap money, and my job is boring, the only good thing is Lynn Droy, she has become one of my best friends. I think we both feel the same way, it's a comfort thing.

Pissed off

Some kid took Noah's baseball glove, Noah gave it to an older kid to play with for a while, well the kid didn't give it back, he told Noah that it "fell off" his hand and he couldn't find it.
Why the hell aren't kids being raised properly? Noah would NEVER do that to another child. Now Noah is suffering because of it, he won't confront this brat so I called the school today, hopefully something is done about this. I don't want Noah to be a push over.
I ended up buying Noah another glove yesterday but we wouldn't let him bring it to school today, he had a total meltdown this morning, poor kid, but I didn't want another one lost or stolen again, I can't afford to keep replacing them.
The funny thing is, we wrote Noah's name in marker inside the glove, I know that if my child brought something home with another child's name in it I would question it.

Why won't she sleep?

Fiona is almost 19 months old, she has not slept through the night once, well the day of surgery she slept all night.
It's so frustrating, she goes to sleep no problem but she won't stay asleep, she wants to sleep with me, I want her to get used to sleeping on her own. Last night we both had a major breakdown, I was trying to let her cry it out, she started screaming at the top of her lungs, so I tried to calm her down by picking her up, well that didn't work, she threw herself backwards and was inconsolable. I started crying also. Keri came in and I yelled at him to get out, I had it under control, but I didn't I started yelling "Make her stop crying". I felt like she was a newborn again, I had all those feeling come rushing back, it was awful.
I don't know what to do, I'm so sleep deprived, I need sleep!!!

We raised $1000.00

I'm so happy, my goal was $500.00 for the sick kids walk, and we raised $1000.00. I thought maybe this would be the last year that we do it because I donate every month to Sick Kids hospital, but I want to do the walk again next year, I won't ask for any donations, Keri and I will just give money. I have to give back to Sick Kids anyway I can. I owe them, they were wonderful with Fiona. We are so lucky to have one of the best children's hospitals right near us.
We met so many families who have to pay to stay in motels and hotels because they are from out of town. One thing that Keri and I promised to each other was, if we ever won the lottery, we would give a ton of money to Sick Kids, but we would also open a house, like a Ronald McDonald house so that families can stay close to their children.

Sick Kids Walk

Last year we did the Sick Kids walk....I raised $1300.00. This year so far I raised $850.00. I'm so happy because all the proceeds go right to Sick Kids hospital. Here are a couple of pictures from last year. I will add this years pictures on Sunday after the walk. Fi will be wearing her awesome cranio shirt that my peep Candice from CK designed, and I'll be wearing my CK shirt again.

Life in general

I feel like I'm in a funk right now...so much has happened since Fiona's surgery....the 6 months leading up to it were the worst time of my life. I had so many questions, why should we put our baby through this, why was this happening to our little girl? The stress and anxiety was overwhelming, I remember driving one day...I don't know where I was but I started crying....I wanted to drive into a wall. Thank God the feeling past....I didn't know how to deal with the surgery, or the feelings.
I started weight watchers in January....I've lost 20 pounds.....I have not gone for 3 weeks.....it's a combination of a lot of reasons, I'm not in the right frame of mind right now, I can't attend the meetings because Keri golfs every Saturday morning, the other 2 days that they have meetings are the days that Keri is in school. I'm in a funk....all I do is take care of the kids, I have NO me time, and when I wants some I feel guilty for asking, actually even if I wanted some I can't Keri is too busy right now.

On a positive note Fiona is almost 8 months post op...in 2 days from now, at our last visit to Sick Kids, Dr. Phillips said everything looked perfect and we would not have to go back for 1 year....great news. We are doing the Sick Kids walk again in a couple of weeks....I won't be raising as much money as I did last year....I feel bad asking my friends and family for money again.

My Dear Mother In Law Stella Morris

My Mother in Law passed away at the end of March. She had 4 tumors in her brain, she never told us about it, she didn't want us to worry about her. She didn't want to see us at Christmas and she never saw Fiona after the surgery....I was so upset with her because I didn't think she wanted to see the kids at all.....little did I know it was probably break her heart to spend time with them knowing that she didn't have much time left.

I have so much guilt that I carry with me each and everyday for the way that I talked to see the last couple of time on the phone, I got upset with her because of not wanting to see the kids.

She was a wonderful Mother in law and a great Nanna.

I miss you so much Stella....I hope you are having a great time with your love John.