Few weeks have been crazy!!

Well it has apparently been a few weeks since I last posted, dosen't mean that I forgot about this I just have been very buisy!!!

Lucas had his video confrence and that went well we waited longer then the entire video confrence took!!  When the doctor came in it was like maybe a 5 minute appointment, and this is how the rest of the follow up appointments will be unless we will be in the Toronto area!!!  I think this is wonderful!!!

Lucas has healed great, just had our 6 week post-op date, the only thing I have to say about his healing is that he had 2 spots on his scar where he would scratch and pick at and they really scabbed up, the first one really bumped up one night and we took him to the emergency room as it was 8pm on a Saturday night on Manitoulin Island,  But in and out in about 30 minutes your being a mom not a nurse at this point, is pritty much what I was told, also to keep doing what I was doing.  I had also e-mailed and spoke with Dr. Phillip's nurse co-ordinator and they believed that the marks were just Lucas' body rejecting the stiches.  The other area I'm thinking of was a big scab, so Chris and I took and sofened the scab and got it off and we were then able to take 2 stiches out of that area and get the rest of the stiches out of his head too, but I also took a picture of this and sent it to Alan and to him it looked the same as the other side as it didn't look infected at all and I was then told that this would probally heal in about a week now!!  and well it's healing really fast now, but I still put some vasaline on it once in a while to get the scab to stay soft and help the area heal!!  Lucas just don't want us to touch his head anymore at all!!!  It's kinda like he says just leave me/it alone, NOW!!  but aside from that it looks great you can hardly notice the scar now and its still really fresh I can only imagine it in a year!!!

Lucas and Nicholas have also had their year healty baby doctors visit.  Their family doc wants to see pictures of Lucas' before and after!!  The pictures are comming Just need a little more time!!

The day before the video confrence Nicholas and Lucas had their first birthday and it was also Thanksgiving day, and one of the nicest day that October had seen!!  We had their party outside as it was so nice, too nice to be inside!!  They enjoyed their cake and gifts and are having so much fun with their new toys!!

My Dad, sister and her family, and my uncle Trevor came out for the party.  I was happy to see them there as it was the first time since my moms funeral that I had seen them, and now I'm looking forward to going to the Island for deer season!!!  I have 2 weeks off and I think its gonna be great!!!

I'm not sure what we have planned for Christmas yet but that will have to wait until I get my work schedule, but I'm working extra time to get my over time hours just to get on my feet and pay for christmas and birthdays that are comming soon.  But on a brighter note I have started to sell Avon and with the Christmas campaigns I have made enough money to pay for my purchase through them!!  Free presents!!!  nothing better!!!

Well I think thats it for now.  I will try to write again soon but I'm not sure if thoes 2 trouble makers will let me.  but will try!!

Vidoconference

Well we finally have our appointment date and time for Lucas' follow up through video-conference.

His appointment is on Tuesday the 11th I can't wait, he is healing so well.  The only problem I have had with this appointment is that I wanted, and almost did, call my mom to tell her when it was!!  This is the first appointment since she passed and I'm hoping I wont have a hard time with it but I will probably have to call my Dad to let him know how it went!!!.

On a brighter note the day before his appointment the boys turn 1!!!!  Thanksgiving day at our house will also be a 1st birthday party!!!  Looking forward to that!!

Horrible week at home!!

A lot has happened since my last post!!  Well the first few days at home with Lucas were ok, but by Saturday morning we were packing up and heading to Sudbury.  My mom, who was with us right through everything with the surgery, who traveled with us and helped pay for the hotel and so on, was in the hospital not doing very well.  When I got there and seen her she was in ICU and on a breathing machine and several IV medications.

Well that day she had a CT and was doing not to good but not horrible either, she had also had an allergic reaction to some antibiotics that they had given as they found infection in her blood stream.  We went home that night but went back to Sudbury Sunday morning, well she was worse!!  A lot worse, but one doctor mentioned that it was not even 48 hours yet and to let her try and fight the infection.  Well we all went home, or to families houses that were in Sudbury, by 10pm to try to sleep.  Well Nicholas woke up at 230am screaming not completely sure why but probably scared of the dark, but at 330am my dad called us, he was staying at a different family members house, saying the hospital called and he wanted us to go in with him. 

When we got there, at 400am, the nurse had told us that she was maxed out on all of the drugs he could give her to keep her blood pressure stable.  Mom held ok there for a couple hours so at 6am my sister and I went back to where we were staying and got the kids and the rest of our families, and went back to the hospital, dad stayed there.  We got back to the ICU waiting room by about 930am and dad had already gone in to see mom again.  We convinced him to go and get some breakfast and we had got a coffee for him as well.  While my sister and I were there mom had a seizure, so we got dad and the doctor, and this was the point that we finally decided to call the entire family because mom wasn't winning her fight any more. 

My sister and I went out to call family and that was the hardest thing I think I had to do!!  We waited for all the family to get there and were in and out all day.  At about 4pm all the family that needed to be there was and we again spoke to the doctor and made the final decision to stop medications as they weren't working anymore anyway!!  Well with in the hour after stopping all the medications mom passed away!!!  All of us were there including all of her brothers and sisters and son-in-laws.  After I went and held Lucas and he cuddled into me like he knew something was wrong!!!

Well during this week, 2 days later, on Wednesday, I had to call the doctor for Lucas as it looked like he might be getting an infection in his incision.  Well speaking to Alan and then sending him the picture it was ok just a little local reaction to the sutures. 

That night we went to a wake for a good friend that passed away the same day as mom, and that too was hard to hear!!

Thursday was moms wake/visitation and that went ok boys were ok but wanted mommy!!  Friday was the funeral, horrible day all around!  Cold rainy day so once we were at the cemetery, it was awful!!  We came home Sunday this week and I am finding that I want to call home to talk to mom about some things.  I guess its the little things like that that I'm gonna miss the most!!

Mom I miss you and I always will!!!  I need you!!  and you will always be there with me, only now in spirit!!  I love you so much!!

Post-op

Well as I said in the last post we got a phone call at like 7am Thursday morning saying that Lucas was going up to his room on 8C.  So Chris and I got ready and were at the hospital by 8am, went to Timmie's and then went up to his room.  We actually rode up in the elevator with Dr. Phillips.  He was on his way to see Lucas too!!

We went into the room Dr. Phillips was satisfied with the way he was in the morning.  Then he was off again.  Well Lucas woke up and I had to pick him up!!  Well I wasn't able to put him down for more than a few minutes the rest of the morning. 

Actually the only time he let me put him down is when the too out he drain in his forehead and his catheter, and then only about 10min while I had some breakfast!!

When I was finally able to put him down is early afternoon and that's when he had to go for his post-op CT to check placement of his new head.  He was good he went to the CT and didn't even move!!  But when we got back it was back to mommas arms again for the rest of the afternoon!!

He did eventually settle and I was able put him down for the night, aside from a couple of time he came awake through the night, and wanted to cuddle!!

The next few days are kinda a blur now but these days are the days that he swelled up.  Nicholas didn't know what to think about the way his brother looked and I think that, one morning he was even scared of Lucas.  but they played together a little and then I think they started to know it was each other more.  The night before his eyes opened Lucas got down off my knee and sat on the floor but because he couldn't see when he went to crawl away, he run into the crib!! :( ouch!!! 

The very next day by lunch time Lucas could see out of a sliver of his eyes being open!!  yes finally!!  He could see everyone again, the next couple pics show that!!

I'm sure once he opened his eyes and was able to play with Nicholas they were both so happy, and Nicholas was relieved that, this is my brother and he is happy to see me!!  I just loved the way Lucas would just move his head back as far as possible to see everything and everyone!!

Sunday night, after everyone had gone back to Ajax for the night Lucas did not want to go back into his room,  at one point he was on the floor and I unplugged the tub and turned around and someone was half way down the hall!!  He didn't want to be there anymore, he wanted to go home.  Thankfully we were told we were going home in the next morning!!!

This picture by far is one of my favorite ones and that was taken the morning we were going home!!  Lucas had to sleep with me on the pull out I had but at least he slept!!  By 1130 that morning we were on our way home!!  Well to the island anyway!!  Lucas traveled not too bad on the way home but I think everyone was ready for a good sleep and wanted our own beds.  So come Tuesday afternoon and our own beds we all had a good rest that night, Nicholas even slept the clock around!!

I will try to keep you updated as I have time to do so.  We still have a long recovery time but I think it was all worth it in the end!!

Surgery Day September 14, 2011

Today is the day!!

This is the day we have all been waiting for, crying over, stressing about, not wanting it to come, but here it was!!

Pre-op care for no food, then no drink was ok as Lucas slept with us and we were able to watch what he drank and when he drank it!!  and we let him sleep until we were ready to go!!

So once Chris and I were ready to go we picked Lucas out of bed changed his diaper and cloths then into the stroller and off to the hospital for sick children or sick kids for short!!  Nicholas was still fast asleep and we left him with my Parents for the day!!.

We went out of the hotel by 545am and were at the hospital by 6am had to wait a few minutes to register Lucas for his surgery.  We then went up to the pre-op waiting room and Lucas had a little more time to wake up.  Probably by 7am we were in and getting his pre-op vitals and checks done by a nurse then resident, doctor, anesthesia, and a bunch of other fellows and residents that would all be on his case!! 

I took a couple of last Pictures of how Lucas looked because it is going to be a whole different world after.  The "oh so famous" pre-op pictures!!

Then about 745 Lucas was getting hungry and cranky, so anesthesia gave Lucas some sedative and Tylenol and Lucas started to get goofy and sleepy and the nurse was able to take him to surgery by 8am, and on our way to the waiting room I couldn't hold it in any more and I started to cry!!  I don't think it helped that when I looked at Chris I seen red eyes there too!!

Well we checked in at the surgical waiting room on the 2nd floor and then went and got some breakfast and fresh air, as I was really starting to cry and needed a break from the people in the hospital.  It was just way too crowded for me!!  and well Chris needed to have a smoke!!  So we sat outside for a while before we wandered back into the hospital!!

We were back in by 9am and we sat, I read my book and cried a little!!  930 came and mom and dad were at the hospital then with Nicholas and Chris and I met them at the Tim's that was in the hospital, after a quick tour of the ICU where Lucas was to be going after his surgery. 

So we sat with mom, dad, and Nicholas for a few minutes and went back to the waiting room by about 1030.  Mom, dad and Nicholas went down to the Cafeteria and Nicholas played for a little while, then by 1200 we didn't want to wait anymore and went to the cafeteria so we could get ourselves some lunch as even though we were just sitting there we were hungry.  We only stayed for a short period and was back to the waiting room by1230, mom and dad ate and then came up to where we were about 1pm and sat and waited there with us.

Well about 110pm Lucas' surgeon Dr. Phillips came in spotted Chris and gave him a thumbs up.  We went to a little room and he told us how the surgery went, saying he got almost perfect shaping on his head and that Lucas was on his way to the ICU and that we could probably go see him in about 15 minutes.  The only problem the had was establishing an IV site on the little guy!!!

Well wonderful, great, all was over and went great, no complications what so ever, we were thrilled!!  This time tears of joy, relief or happiness what ever you want to call it they came.  And just when I was about done I look over and my dad is crying, this man I have only see cry once when his mother died, was crying because Lucas was okay!!!  Well didn't I start crying again!! (and look at me now crying again trying to write this damn thing)

Okay so we waited and waited and waited for them to tell us we could go to ICU waiting room and to see Lucas finally I asked if we could go there to see him. We went to the ICU waiting room and called they asked us to wait about 5 minutes then go in.  So we waited and then went in.  Lucas looked good, different, but good.  A few tubes and wires but honestly didn't bother me, I was totally expecting it, This probably got to Chris more then it got to me!!  He was great!!  Chris and I stayed there for about 30minutes and then went out and Mom and I went back in to see Lucas.  She and I were only there for about 15 min, I asked when a good time to come back to hold him would be and was told that around 5pm would probably be the best time!!

So I left our cell phone numbers and we all then went back to the hotel had a little nap/rest/break from the hospital.  Chris and I went back to the hospital around 5pm to see Lucas.  We got a couple pictures and I got to hold him and talk more to him, and was asking Chris if he wanted to hold him, Chris and I seen all the pokes that Lucas had from the many attempts at an IV and then I got puked on!!!  Par for the course!!  So back to bed he went and the 2 of us only stayed for a little while longer!!  Probably until about 6pm then we went back to the room for supper!!!


After supper, mom and I went to see Lucas just to make sure that he was good for the night.  Lucas was sleeping and didn't really even budge, his nurse had just come back to sick kids after being in Australia and nursing the adult population, so we were trying to find out how different he found kids to adults.  But once we were satisfied that Lucas was going to be good for the night mom and I went back to the hotel and found Nicholas and poppa relaxing together on the bed and Chris all alone in the other one, this was funny!!   Nicholas and my dad really bonded this past week, this was the first day of that!!  We all then got ready for bed, I then called back to the hospital to check on Lucas before I went to sleep and found that he was still sleeping and had no change from when I was last there!!

Well after that I went to sleep, soundly as i checked some messages on my phone and didn't know that I had!!  My phone then rang at just before 7am, when we were getting up anyway, saying Lucas was being moved to 8C at that moment and that when we went in to go to that unit to see him.  Chris and I quickly got ready and went to see Lucas!!

The rest of the week will be on the next post!!

Sept 13, 2011 Day for travel

This day is the day we had for travel!!! 

We got up early morning and packed up the 6 of us, because my parents went with us, and headed towards Toronto.  First stop, gas!!  and a few snacks for everyone!!  then we had to get Timmie's coffee for a couple and a tea for me.  So after about 3 hours of driving we again stopped in Parry Sound for lunch and it just happened to be a Timmie's again, was better for lunch then McDonald's!!  We then made a quick stop at the Wal-mart for some gravol, just in case we had 2 cranky boys!!  Then we were off again, This time no stop until we got to the hotel in Toronto.  We stayed at the Marriott at the Eaton Center, aside from the rate of $179.00 a night, It was great staying there, we got our luggage brought up from the front doors for us and brought into the room.  Then were asked about a fridge and a microwave, and if we wanted a crib for the little guys.  Well we decided to take the fridge and microwave and waited a bit for the crib.  We rested a bit then went for a walk to see how far away the hospital was from the hotel and to find a place to eat!!  Well it didn't take long to get to the hospital from the hotel so I was very happy about that!!! We found ourselves some food and we had visited the Eaton center and found a swim suit for Chris as we forgot his.  Then we returned to the room and waiting for us was 4 large soft chocolate chip cookies and tea!!  We then called for a crib and with that came a box of soap, cream, powder and diaper cream!!  We thought that, that would be better for Nicholas as he tends to sleep better by himself.  We then got ready and found our way to the pool for a little swim!!

After the swim we got ready for bed, the boys had a bath, Nicholas pooed in the tub and everyone then went to bed!!  To prepare for our very long day tomorrow!! 

See my next post for "tomorrow"!!

Where has my time gone?

I'm sitting here at midnight wondering, thinking, and doing a little crying for the days ahead, and I can't believe that this week on Wednesday Lucas will be having his surgery!!  I'm so not ready to be in Toronto again and I'm not ready for his life to be in the hands of others again!!  I just keep praying and hoping and knowing in the back of my mind that I am doing the right thing, even though I have the thoughts that I shouldn't do this, that he is fine and that nothing good will come of it. 

All I gotta keep hearing is that this is the right thing to do and that he will be fine and the doctors will do their jobs to keep him well during the surgery.  I have been hugging and cuddling I just don't want to let him go!!   Oh God please help me and us get through this!!!

I want the other side to be here but I also, don't wanna go through the thick crap that I will be going through!!  The other side looks good from here just because this surgery will be over, but then there will be the days, weeks and Months of post-op, i guess that is the down hill side of all that we have been waiting for!!

We are so not ready!!  Prepared?  YES, Ready? Not at all!!!

The secret of health for both mind and body is not to mourn for the past, not to worry about the future, not to anticipate the future, but to live the present moment wisely and earnestly.

- Buddha

confessions of a cranio mom

I am stealing this but It is very true!!

I Cry.
It might not seem like I do because most of the time I wait until everyone is asleep. Then I use the darkness of the night to hide my tears. Like a baby I cry myself to sleep and I silently wish the tears will wash all of this fear away.

I Obsess.
I research and I read and I blog until my eyes bleed. My poor eyes. I can't learn enough... can't know enough. I keep on searching for a different/better answer when I know I have already found it.

I Hate.
I'm not a jealous person but why is this happening to my precious baby and not yours. It isn't fair, it isn't right, and I hate the fact that you are so happy and I am so unbelievably scared.

I Doubt.
I doubt my decisions, I doubt my surgeons, I doubt my motives, I doubt my faith. It's amazing how someone who once was so strong can crumble into a million pieces so quickly.

I Wait.
For answers... for appointments.... for surgery..... for acceptance... to finally shout from the rooftops "we're on the other side".

I Stare.
At your head, at their head..... At the waiting room wall..... At the Ct scan... at the surgeon when he says "craniosynostosis".

I Deny.
I make yet another appointment in hopes that someone will reverse the original diagnosis. This can't be happening.

I Worry.
About everything. Developmental delays.. ICP... what other people will say.... your vision...Your blood count... Anesthesia... Second Surgeries... will it ever stop?

I Pray.
For guidance, for peace, for my life to return to normal. For a successful surgery for you and a successful surgery for all.

I Cry Again.
I never knew that happiness could bring so many tears. You smile at me behind all of your bandages and wires and I melt into the floor.

I Grow.
Not only as a mom but as a person. Your journey and strength changed my life for the better.

I Overcome.
The fear, the anxiety, the tears, the hate, the doubt, the worry.

I Love.
My baby. My cranio family. Your successful journey and the beautiful life it's become. 

only 3 more days before Lucas has his surgery and I'm not ready, I'm falling apart at the seems, I'm coming unglued!!

Busy 10 days ahead!!

Well we are 12 days away from the day of his surgery and I don't think I could get any more busy. 

This is how it all gets laid out before we travel to Toronto on the 13th:
I'm working this long labour day weekend four day shifts, am I nuts?  Possibly but yes count 'em 4 day shifts.  I am nuts!!

Tuesday I have to travel back to Sudbury to donate another unit of blood for Lucas. 

Wednesday and Thursday I'm working another 2 day shifts, good grief days again!!  I really don't like them, but whatever!!

Friday Chris has an appointment in the morning and Lucas has a Dr appointment in the afternoon to fill in paper work so Lucas can have surgery, saying that he is healthy this week!!  Then when that is done we get to travel to the Island again for another wedding.

Saturday is the wedding and I think by this time I will be so tired, and the fact that my blood levels will be much lower, if I drink much wine, more then a glass, I may be fairly inebriated but we/I will enjoy!!  Once the first dances and so on are done Chris and I had decided that we want to come back home before we have to travel all that way to Toronto, so Back home we will go!!

Sunday NOTHING planned, possibly a local NOJHL hockey game but really nothing planned.

Monday - boys to day care, Chris to work, me packing cleaning and whatever else that may possibly need to be done before we leave for at least 6 days!!  That night we will head down the highway again to the Island.
And along comes Tuesday the day we Travel 6 hours on major highways with 2, 11 month old babies!! 

Then Wednesday is the 14th and we have to be at Sick Kids for 6 am prior to Lucas' surgery.

I'm starting to think that not only will I be one tired momma but I may possibly go crazy, especially with all the day shifts I will be doing prior to my departure!!

First Donation done!!

Ok so first donation done!!!  Still need to go back next Tuesday but for now, the list of things to do is starting to decrease!! 

Well for today, I went over in the morning and did my shopping that needed done and then I had lunch and was still a ways away from the appointment time, so I went to the park and sat there and started to read one of my new books.  I needed that, time away from everything!!  even if it was only a couple of hours!!

At Canadian Blood Services (CBS) I had timed for about an hour for the donation, and well I was there a few minutes early and was leaving at the 1hour mark from the time of my appointment.  The donation it self only took about 6 min but it all the paper work that has to be done that takes all the time!!  Hopefully next week it will just be the blood donation next week and not so much paper work, hoping for 30min!!

One step at a time!!  Day by day!!  This is how I'm going to take the next 2 weeks!!

Up dating!!

Well I have my appointments to go and Donate for Lucas and now its just a matter of making my way to Sudbury!!  I go for the first donation tomorrow and I don't think that is going to be a problem as this one will be just like when I donate on a regular basis.

I then donate again on the 6th and that week is gonna be so hard for me as I will be coming off of 4 day shifts, travelling to sudbury for this donation then working 2 more day shifts before I'm done until the end of September after Lucas' surgery!!  Crazy couple of weeks!!! 

I'm just hoping that my energy keeps up!!  Iron do your job, and stop making me feel crappy!!  Oh well maybe I should just lay off until after tomorrow!!

anyway that's all for tonight just wanted to give a little update on what is going on in my world!!

Blood Donation

Well I called to find out what is going on with my appointment to donate blood for Lucas for his surgery and well all my info was in Toronto!!  We got the Info to the correct place and now I'm waiting for an appointment dates and time!!

I also found out that I have to donate twice about a week apart because we are so close to his surgery date!!  Well if I knew that I would have called a heck of a lot earlier then yesterday/today to find out what the heck was up!!  So now I'm looking at donating Friday and who knows when!!  but we will see!!

Like I have said before I just want this to be done and over with!! I'm gonna be so tired!!  I guess I better make sure I keep drinking and eating well especially taking in a good amount of Iron....  mmmm red meat here I come!!! 

OK well I have 2 little boys fighting over, oh everything so I gotta go and referee!! 

Three Weeks left!!

Well 3 weeks left and I'm not sure how I'm feeling, between working and home life I haven't really sat down long enough to think about it!!  Calling home after the weekend My mom tells me how many people were asking about the boys and about Lucas and his surgery.  Kinda makes you wonder some days who is actually out there that "is" thinking about you!!

When I'm at work I'm not thinking about home, or whats to come until I get distracted or someone asks me directly about it, and it doesn't seem to come up that often!!  Thankfully because I don't like crying at work!!  I do enough of that when I'm at home thinking about whats to come!!

I still have to book an appointment to donate blood for Lucas during his surgery, I'm hoping next Thursday or the next Tuesday but we will see!!  I'm calling first thing in the morning!! 

I guess the only thing I'm worrying about right now is if Lucas gets sick!!  I was sick 2 weeks ago, now Chris was sick, it better not get passed on to Lucas, I don't know what I would do if his surgery gets cancelled due to and illness!! 

I have almost everything ready for our trip, I have my time off, hopefully I will have most of it payed with vacation, stats and time in lieu!! Chris will have it off, but without pay, not a huge deal!!  I still have to find cloths that either don't go over his head or have a huge neck on them, but I'm thinking I just may go with the pyjamas for him, mainly because it will be more comfortable for travelling, but I am open to suggestions!!

Another thing I have on my mind right now, like I don't have enough on my plate, is starting to plan the boys 1st b-day party.  We have a date and know where we want to get a cake but that's about it.  We are telling a few people when it is but haven't told most yet!!  And I have decided to start selling AVON so I kinda take my mind off of things with Avon but just another thing I have to deal with!!!  But I'm enjoying my time just starting my AVON home business, its great!!  easier than I thought!!

I started that because I was hoping to get orders to help off-set some of the travel costs to go to Toronto but it will just add to some kind of fund for ourselves to have a little extra spending money!!  Maybe once I establish customers It will help with travel costs, especially considering Lucas will be seen for at least 7 years after his surgery!!

Well I think I need to find a pillow and rest my weary eyes, 2 little boys have kept me hopping these last 2 days, even though we slept most of the day yesterday!!  I'm back to nights tomorrow night for 2 then off to the island for the first of 2 weddings in the next 3 weeks!!   So to Jen and Brad congrats!!  and to the rest of my family we will see you this weekend!!

One month today exactly!!

Today is August 14th and Lucas' surgery is exactly a month away.  to be honest I'm not sure how I am feeling about that.  I could be feeling more around the fact that I am now back to work and that the boys are not themselves.  But that will come in time as its a huge change for them as well as me, because they don't have Mommy for a few hours a day and they are at day care, and now tomorrow night is my first night shifts and it will be the first time Mommy is away from them for the night.  Poor Daddy!!! 

Despite all that, over the next month, I don't really have much time to think about all that stuff because if I'm not working I have so much other stuff to do.  Like 2 weddings on the 2 weekends I have off now, another doctors appointment for Lucas with his family practitioner, and I still have to get an appointment day for going to Canadian blood services to donate blood for Lucas.  All of this on top of a full time 12h shift work schedule.  My 31 days is cut to 14 full days with the boys but some of those days are also days for travelling.  Three will be travelling to the Island, 2 travelling back home, and another for travelling to Toronto, so that's 9 days together.  Subtract another for the day I have to go to Sudbury, when ever that may be!! Then the 2 wedding days and I'm down to 6 days for me and my boys!!  That sure don't seem like enough cuddle time!!

Now for some prayers that what ever this sore throat/fever thing I had last week doesn't make its way through the house, or touch Lucas at that, so he can have surgery in 31 days.  Here's hoping, I honestly feel like I need a drink!!!  Well at least I have 2 weddings I can celebrate with a drink!!  I'll write more when (if) I have time.

one last little quote that is running through my brain tonight:

Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.

Doris Day - Que Sera, Sera!!

Hotel and Donation updates

This morning I get a phone call at 850am and I'm just kinda wondering who it is.  Its an unfamilliar voice on the other end but she identified herself and said she was from Dr. Phillips' office and that she had some good news for me.  It turns out that Lucas and I are compatable both being B+ blood types so I am able to donate blood for Lucas to use durring surgery.  This is just great news!! 

Then this afternoon I was calling around to hotels again to try to book on for the first couple of days that Lucas will be in hospital and well that was a little chore, but I got one booked, and at the same time found out why it was so hard to find any rates that were any good.  I guess its toronto's film festivle that week and the hotels put up their rates for that week.  So I booked a room about 5min away from the hospital.  The rate is still $179/night but that is still half price.  Not sure if we will keep it for the 3 nights but we will make that choice later,  and we will move out to a friends place in Ajax, where even with the price of gas and parking it will still be cheaper then the room!!

Pre-anestetic, eye and pre-op appointments, travel home, and country fest

So the next day Lucas had 3 appointments starting at 830 in the morning. So I wanted to be at sick kids early like 745-800am and that's what I had planned, but the roads in Toronto again suck, where I could see the hospital from the hotel I had to drive a long way out of my way just to be able to get back to the hospital, I was ready to scream!!!

But we made it there parked and were up to his appointment exactly on time, well they wanted him registered by 815 so i think 813 was cutting it close!! This was the pre-anesthetic appointment and out of all the appointments that day this was probably the longest with a doctor/nurse combination and we were on our way to the next appointment by 920.

We found our way back to the eye clinic to see opthamology to check the pressure in his brain, we got there and mom and the boys found a seat while I waited to register Lucas again. Well this appointment was at 1000 and we were finally registered by 955. Crazy 25min standing in line to register. I think we waited another 10-15min and the nurse called us in and checked Lucas' eyes and sent us back out for 20min but that too was like 35-40 when the doctor called us in. I took Lucas in and in all of 5min we were done, no pressure looks good will see you in approx. 6 months as he has a little bit of a lazy eye.

It didn't take long to get to the next appointment, final one of the day, with Dr. Phillips. Again we registered there, at exactly 1115 (our appointment time) and only waited about 30min. Allan came in and spoke to us, he then left and Dr. Phillips came in, said "its not better" sounding kinda like he wanted it to be. But he let us ask the questions I needed to, like for day care after surgery - 3 weeks post op approx. and what about walking and falling and bumping his head - only worry if he gets a good goose egg then call and we will assess him.  I'm thinking that was really all the questions I had and he left and had Allan come back in as Lucas needed some blood work as well and I asked Allan if I could be tested to donate blood for Lucas to use.

I then got registered and forms filled out and we were off to the lab.  Lucas did great, he was screaming but I think that was because he was being held down/still, because he didn't get louder when he was poked for his blood.  I was next and I have the bruise to prove it, just wondering if they are use to adults??  But any way after a little snuggle we were off back to the van to hit the road to get home!!  By this time it was already 115pm.

On the way out of the city I kinda got a little lost, couldn't get my bearings, then on went the GPS and we got out quickly!!!  As soon as we were in the van moving the boys fell asleep so we delayed lunch until they woke up, so I drove through Barrie to the horseshoe valley, where we pulled off and made a quick change where I settled in the back with the boys and mom drove.  I fed the boys while sitting on a cooler, and unbuckled the boys to change their butts, very awkward!!!  but necessary.  Lucas ate almost a whole bowl of soup by himself where Nicholas wasn't interested!!  So the time kinda blew by and before I knew it we were at the Parry Sound exchanges.  I climbed back to the front and settled myself while the boys did the same, not very well but they did.  Then we were finally on 17 again and it felt like home, even though we were still a couple hours away.  When we got past Sudbury going through Narin, there just has to be an accident but traffic was still moving, it was a school bus in the ditch looked kinda like the front axle fell off. 

After that we were on our way to the Island, and we made it at 700pm.  We get to my aunt and uncles got the stuff we need for Country fest and walked down to low island for the event.  Tara Oram was just finishing up her set when we got to our seats.  Lucas went straight to daddy and Nicholas was next as Daddy was missing his boys too.  We watched Dean Brody, once he was done we went for a little walk around and we got back to our seats and the boys settled in the extremely loud music and slept right through Jason McCoy's show.  Not really sure how or why they slept but they did!!!  This show was really great!!!

We went back to my parents house for the night and then back to Little Current in the morning to visit and unpack the van to the truck.  Then it was time for Country fest again.  The whole day was great just really hot, so we found a little place in the shade and really stayed there until Crystal Shawanda went up on stage.  After her amazing performance we went for a little walk and got back just in time for George Canyon to go on.  At this point the boys were really tired so I changed their butts and cloths and they had a bottle and a cuddle and again fell asleep in the loudest music, they didn't wake up until they were moved to put in the truck when it was time to go home at like midnight.  George Canyon's show was great, we saw him 2 years ago in the pouring rain and it was a running joke, but this year he was eating bugs!!  I guess in this case bugs are better then rain!!

Well we came all the way home after the show as the boy's aunt and uncle were here and wanted to see them, after not seeing them since Easter.  So we waited until they were awake to go visiting, short visit but good.  They boys had a quick lunch and we all were laying down by 230pm for another nap!!  They Kinda caught up now, today was a normal day for naps and so on.  But our nice little routine is going to be disrupted as tomorrow is my last day of mat leave and the boys are in day care all day!!

So I'm just happy these few little things are done with now just 5 weeks of work, and 2 weddings to go to before Lucas' surgery, I'm already counting down the days 'till we're on the other side of this long journey!!

Travel to Toronto and CT

I know its been a while since I posted but not too bad!!  Just getting home at 2am this morning from a long week and great weekend. 

Tuesday night my lovely husband brought me and my boys to meet my dad, so that I could get to their house before me and my mother traveled to Toronto.  Wednesday morning we left around 7:45am, to miss the bridge and so the stores in Sudbury were open.  We stopped at wal-mart and cost-co so we could get some much needed diapers, formula, wipes, etc.  then we were off to Toronto!! 

We made another stop in Parry Sound for lunch before we continued on our way!!  The boys did great slept off and on and were happy for the most part!! 

We got into Toronto about 5pm and made our way down town.  If you ever need to make a left hand turn in Toronto don't because between 7am and 7pm its apparently illegal on most streets!!  frustrating as hell!!  correction it is hell!!  but after driving around then parking and looking at the map and where I need to be I finally found the hotel, but needed to make a Lt hand turn, ahhhhhhhhh!!! 

So on a whim after thinking I'm on the wrong street, I make a rt so that I can find a place to park and look at the map again, and what do I see?  The sign DELTA CHELSEA right in front of me, we got to the hotel, yeah!!!  how we did that, I still don't know, but we were there!!  I go in and find out how to get to the parking lot, we go park, then go and check in.

Twelveth floor up and 3 levels down!!  We had to take the "green" elevators to the 12th floor where our room was and we had a balcony and a beautiful view of cranes and construction building condos, not the best I know but the boys loved watching the cranes moving!!  So getting the luggage was a chore too,  we ended up being on the 3rd level down, and so hot down there, not fun!!

later that night, after we got some food in our bellies, we found the pool and let the boys have a little swim.  A little nervous at first then they perked right up and joined in will all the splashing and noise!!  They fell asleep fast after this!

Through the night I had to watch the clock and make sure Lucas didn't have any formula past 2am, we cut it close 1:50, but only a couple sips of water at like 4am to get him to settle again!!  Nicholas was up at 530 that morning, so I let him play before getting Lucas up.  I didn't wake Lucas until just before we were ready to leave, so that he didn't get angry and ask for a bottle!!

We got to the hospital and found our way to the CT department and, I love being the 1st appointment of the day, got registered and seen the nurse, then it was a little play and off for the CT scan.  Then when he came back I was with him, and they had to put him right out!!  I mean IV and right out, 3 different medications.  Midazolam, nitrous oxide, and propofol!!  My little nosy Lucas wouldn't lay still with just the first 2!!  So he woke up exactly an hour after he was given the medication and that afternoon, my mom and I laughed so much with him being so goofy, he seemed really hyper once we got back to the room, then he was a little wobbly as well and kept on falling over when he was sitting on the bed, my baby boy was DRUNK!!!  It was so cutie and funny to watch.

He also seemed to have the "munchies" just because the way we would eat a cookie or a mum mum and then the way he ate at supper, just a silly little boy!!! 

We again found the pool that night, and they just loved it, wouldn't stop moving and because of that fell asleep quickly that night too!! 

What is going on in Toronto in September???

So I'm calling to hotels in Toronto and I'm now officially frustrated and sad and angry, and so many other emotions, that I either can't get a discounted rate or I can't even get a room for the few nights.  When I finally get a room at an ok price, when I get the e-mail notification it was for AUGUST.  August when I'm calling to get prices on rooms for SEPTEMBER, like common!!  Now for September they are "over booked" so I can't even make a reservation!!

What the hell do I have to do, rob a bank because if I book a room at regular price I'm gonna have to pay an arm and a leg, just to stay 3 night let alone the week we are looking at staying for Lucas surgery!! 

What the Hell do I do now!!  Take the one bedroom suite that is only 159 for one night and 359 the other 2 nights or do I go with the 259 per night room.  I can honestly say if Lucas wasn't having surgery I wouldn't be staying in down town Toronto!!  I wish I had family there!!  Just one more thing to add to all the stress I have in the next 6 weeks!!

Lucas CT on Thursday

Today I'm finishing my laundry and packing for my long trip. Tomorrow I will finish packing and travel to my parents house on Manitoulin Island, Ontario, Canada. Then on Wednesday my boys, my mom and I will all pack it in the van and travel the big highways to the big city of Toronto, where on Thursday Lucas will under go a CT scan and Friday he will have appointments for his eyes and pre-anesthesia and pre-op appointment with his surgeon. I'm just hoping everyone will co-operate with the 6 hour long ride!!

Along with going to Toronto the heat is suppose to be horrible and I think the only saving grace will be the pool at the hotel, I just hope Lucas will like it!!  He has a tendency not to like water.  Nicholas on the other hand has a blast in the water.  So here's hoping!!

Tomorrow is also the first day of day care for the boys too, so that I can get packing, and get them use to going as I'm back to work next week :( boo to that, but I guess we will see how it goes!!!  I think they will be ok!!  Ok I HOPE they will be ok there!!

I will let you know how the CT goes some time next week!!

I just wish we were on the other side!! :'(

Here I am at 1130pm and thinking how I wish I could just shake all of my life down to just one or 2 things to take some pressure off my head so I can just lay down and sleep, and have a good sleep at that!!

I find it very stressfull with what is going on with Lucas and then Nicholas and Lucas are starting day care next Tuesday and I'm trying to get things organized for that.  Then the week after I'm starting back to work, thank God, but would rather be at home, if only it payed as good!!

For the last 3 nights I have found myself laying in bed and crying myself to sleep as I don't know what else to do.  I start thinking about leaving my boys with the day care, not that I'm scared just more like apprehensive, and then going back to work, that alone will bump up my stress levels, although I will enjoy the "me" time on the 45min to and from work.  and in only a few short weeks Lucas' surgery, as I wipe more tears from my face!! 

I guess all I can do is trust that the boys will do great at day care, considering they have been good the 2 times we visited.  And know that I'm back at work and that I have all the time I need to be off with Lucas.  Then again trust that Lucas' surgeons have done this before and know what they are doing, and just think of the pictures I have seen of others who have been through this and remember the smile on their face on post-op day 2 or 3 when the swelling subsides and their eyes open and they can see their families again, (wiping another tear away), its just the biggest smile I have seen on childern so small, and so beautiful!! 

I just wish we were on the other side!! :'(

CT in one week

Well here we are one week until we travel to Toronto for Lucas' CT, and other appointments.  I'm finding that I'm not sleeping very well but that could just be that I have a lot on my plate.  I will be returning to work in 2 weeks time as well and then 7 weeks from today we will be in Toronto again and Lucas will be having surgery!!

This morning I put Lucas on the bathroom scales, I thought he was feeling a lot heavier lately, and well 20.8lbs yes that's a pound heavier than at his 9 month check 2 weeks ago!!  Now at lunch I'm thinking he didn't like it due to the fact that when I put the spoon full of rice in his mouth, he rolled it around for a bit then proceeded to spit it out "pttttttt" and what was left he pushed out with his tongue!!  I guess no more rice for today!!

Oh well about lunch but I'm just waiting to be able to take him swimming in the pool at the hotel!!!

oh yeah, Lucas also got his pirate hat in the mail yesterday from http://www.cranioangelnetwork.com/, It's a great Picture I got!!

Well I'll have more next week to post!!

Calendar

Holy Hot

It is 84F (28.8C) in my house at this time.  I'm dealing with a fevered (high fever at that) little boy (40C 104F) and the little boy that is going for surgery is being very active right now!!

Lucas was sitting beside the fan and once it would blow on him he would look at me and squeal!! 

With this heat I'm just thinking what it will be like when we go to Toronto in 2 weeks for Lucas' appointments.  But know that the hotel rooms have A/C, thank GOD!!

Lucas is almost crawling and trying to walk so I'm hoping that he has one down before his surgery in September, if not both!!  He seems to be scooting around right now and having the time of his life getting into trouble. 

Well I guess I really wrote nothing but here's to Nicholas feeling better and no more High fevers!!!!!!!

I love the honesty of kids!!

So this afternoon I decided We needed to get out of the heat and go and play for a while at the Best Start Hub here in Blind River. 

Once we got there, literally as soon as I put the boys down on the floor to play, a group of kids from one of the day cares came in to play as well. 

So they boys they just sat there and watched all the activity of these kids about 5-7 year old, maybe some older.  These kids seemed to be really active and were all over.  Eventually the boys got comfortable and started to play and talk and scream the way they would at home.

When a couple of the girls that were there with the group came by and started to play with Nicholas and Lucas.  One of the girls was talking and she mentioned something about the shape of the boys heads.  She said that Nicholas' was round and then she said "I don't know what shape his head is" referring to Lucas.  I didn't really know what to say so I didn't really say anything other then just kinda agree with her.

So I guess this kinda goes along with the "do you notice his head?" post that I put on earlier.  And the answer today would be YES!! 

I guess this could be put down to the fact that kids don't have the "filter" yet for what should be said and what shouldn't, but as far as I'm concerned we should, sometimes, take a page out the book of children and if we want to know something, just ask!!  I'm not saying that we need or should say something that could possibly hurt someone but if you were talking about something like this then maybe these kind of things need to be said!! 

Just think about it, if you were talking to me and noticed his head and how different the 2 of them are and because your "filter" tells you not to comment, we as adults don't.  But a child in the same situation will make that comment and to be very honest it was a welcome comment, just because I know that now even kids do notice and I think that if we were to leave it he would be teased.  Even though I think he may be chased by the girls, he just got a pair of those kind of eyes!!

So we are a little more then 2 weeks away from our trip to Toronto and Sick Kids with all the appointments, and I'm not that apprehensive about it, yet anyway.  So we will see when the time comes!!

Well Baby check!!

Today was the boys 9 month well baby check.  Nothing really to report but that I mentioned the small soft spot and the lazy eye on Lucas and Nicholas' coughing that seems to be allergies!! 

The Doctor checked Lucas' eyes and soft spot.  We had to mention about the CT appointment and then the pre-anesthetic, opthamology and visit with the surgeon appointments.  He did think Lucas' eye was a little lazy but didn't seem too concerned at this point, same with the soft spot but agreed that it did seem small, especially when compared to Nicholas!!  So I think because of all these appointments that have already been set up for Lucas we need not worry ourselves, yet anyway.

The doctor did mention that he didn't think the forehead looked as prominent as when he first saw them (we changed doctors when the boys were 6 months to their fathers doctor so we had one here in Blind River, not mine in Little Current) but that could just be put down to growth all around, filling out the 2 of us agreed on!!

I got the you know when to start foods, nurse, speech and then the little chuckle when he knows that the child will be started with it anyway!!  but I'm not gonna go to aggressively with many new foods, yet!!

So now the 2 of them are passed out and needed this nap!!  So questions remain about some things for Lucas until the beginning of August.  I guess I just have to wait!!

Thank you

"Kristi i had no idea.. your boys have always been dear to my heart and wish i could see them more. I'm very close with your family and have never know about this situation. It has never come up in conversation neither has ever been mentioned while chatting about the boys.. i wish you the boys and Chris all the best.. I know you will get through this and i know little Lucas will be fantastic"

I'm not sure who left me this comment but Thank you for your support.  But I will say that this is why I'm doing this blog.  To inform people about what's going on and to have them understand that this is a very hard decision.  I will say that this is not something that will come up in regular conversation, just because the boys are healthy.  This with Lucas is to make sure he stays that way!!

Again thank you for the comment and understand that its not left out intentionally just not mentioned in regular conversation.  Most family members know and bring it up in the conversation, so like I always say If you wanna know something, just ask!!!

Nine months old, 2 months to go!

I find myself sitting here uploading pictures on face book thinking that in 2 short months Lucas will have a new look!!  And at the same time I'm thinking I love the way he looks now but know that it needs to be fixed. 

Nicholas and Lucas are now 9 months old, wow has the time flown by. Thinking how 8 days before they were born how Chris and I were walking down the isle in front of friends and family, and how everyone was thinking about me going into labour!! Man was that a great day!

Then along came my boys and you know the rest!!

Well back to today and I'm thinking how my little 9 month old boy will do at his surgery.  It's July 10, 2011 today and in less then a month he goes for all of his pre-op appointments and CT and I'm just hoping he will co-operate for all of these!! 

Another thing that seems to be on my mind is the fact that I'm going back to work in exactly 1 month and my boys will be going to day care and as of right now the 2 of them are such mommas boys that I can barley leave a room and one of them starts to cry.  But I know that this will pass and all will be good for them to go to day care!!

I think the most important question I will be asking the doctor about will be about Lucas going back to day care after his surgery, but either way all will be great!!

There wasn't so much of talking about his head this weekend as there was last but for the few that I talked to about it, I'm not too sure if they actually got the fact that it is major surgery and that there are several risks involved, but that's beside the point!!

Lucas is doing great developmentally especially when compared to his brother.  I can't get over how differently they are developing.  Lucas now has 8 teeth, is almost crawling, starting to stand and move his feet when holding onto something.  I love the way the 2 of them interact together.

They were at the midway this weekend and I caught them in a couple of cute photos.

I just hope that their interactions don't change!!

Well I think I have down all that was on my mind tonight!!

Links

Hi everyone, just a quick note tonight.

I have added some links to the websites that I have found helpful along the way!!  Please visit so you can educate yourselves on information about the craniofacial world!!

What is Metopic Synostosis (Trigonocephaly)?

The metopic suture begins at the nose and continues to the top of the skull, dividing the frontal bone into two halves.

The metopic suture is usually open at birth and fusion normally occurs in the first 12 months of life. With premature fusion of the metopic suture skull growth is restricted and the forehead will have a triangular shape and the eyes may appear closer together. This occurs somewhere between one in every 2,500 - 15,000 live births with a male to female ratio of 3:1.

The deformity can vary from mild to severe. There is usually a prominent mid-frontal ridge (pointed forehead) down the forehead that can be seen or felt and the eyebrows may appear "pinched" on either side. The eyes are usually spaced closer to each other than normal, causing a definite recognizable deformity of the forehead and eyes. When viewed from above the forehead has a triangular shape.

The only treatment for this condition is surgery on the skull. In general, a single operation is all that is necessary to treat this condition and the outcome is usually excellent.

Family Weekend

Well, this past weekend I found it much easier to talk to family about what is going on with Lucas and what is to happen. 

Before when I was asked about it I was a little reluctant to speak about it just because I didn't feel right about my decision, and maybe possibly I was in a little bit of a denial!  So this weekend any time I would be asked when or what would be happening I have been able to tell people with ease and not have to worry about anything.  Like are you gonna judge me about my decision for my child, because I have had comments about my decision to have the surgery done.  When that happens I feel like all I have done for worrying or stressing and the nights I have sat up thinking about it have been for nothing.

Maybe the fact that being around my family has helped me to make the decision to just speak openly about it and not worry about it because once you worry your life no longer has they joy you need to make it through such a rough patch with ease.

So here's to making my road a little smoother, and less rocky, to all my family and friends, you are the greatest and I couldn't do this without your support!!  Till next time, Read up on what craniosynostosis is and then you too, may have a better idea what I'm going through!!

Anterior fontanelle, or Soft spot!!

So today I was feeling Lucas' head and just kinda noticed that he has a VERY small fontanel (soft spot) I can barley feel it and even so I'm wondering if it's closed.  I know that it wont be a problem as we have already decided on surgery but just knowing that its almost closed or already closed is another worry on top of everything else!!

I will mention this to the doctors on his next visit. The boys have a well baby check on the 12th and then Lucas is seeing his plastic surgeon again on the 5th of Aug.  so I'm hoping that this isn't closed for one, but that because we have already decided on surgery that this don't change things.

I'm feeling some positive feed back from friends and know that, I have made the right decision. 

Lucas is a little firecracker and it shows through even today when he was getting slathered up with sunscreen just by the way he screams at me when hes mad, or the way he squeals or giggles or is the little beaver that likes to chew on his crib rails.  This is the only thing that I am worried will change, but know, and trust that the surgeons are amazing and hope that he is not the first to have the problems they talk about!!

Do you notice his head???

Sometimes when I sit down and think how I noticed his head as soon as I seen him, I wonder if other people notice his head too.  I wonder if they notice it and just don't want to say anything or do they just not see it. 

I would really like to know if people see it and what their comment would be.  I think if I heard people talking about it or at least asking me about it, I might feel even better about putting him through this surgery.

No one not even the doctors commented on what his head looked like until his 2 month check when the suture line felt "overlapped" and was a metopic ridge.  I don't know if I'm mad at the world for doing this to me after a long time trying to get this child or if I'm just frustrated that its not something that is truly that noticeable.

I guess because I have a scar on my face from a dog bite that people do see, not so much now as when I was a child, but I guess I feel that people should see this, because I do every day!!  And I think that they should see Lucas' head the way it has the ridge at his fore head and the pinching at the temples and the way his eyes are a little closer together. 

When I first saw him because of his looks and because of my nursing background I looked him over for obvious signs of disorders like downs, but nothing that was classic of these conditions stood out so that vanished right away.  But this feeling of what's wrong stayed. 

So I'm happy I know what's wrong now but not happy that he has to have such a major surgery to fix it!!

That's my rant for tonight, late night after long day of 2 whiny, screaming babies, and lots of packing for a week on Manitoulin with my family!!

New to the world and discovery of Craniosynostosis

Well I'm new to this so y'all will just have to bear with me!!


Lucas arrived to this world 21 minutes after is brother Nicholas, and well he needed some help after being born vaginally, breech with is hands above his head!!  He went and visited in the NICU for roughly 4 hours before I finally got to hold him.  I will say now that when I saw him I initially thought "what is wrong with his head"  and then calmed myself knowing that he just had quite a journey, and that this would probably go away!!

Well I was wrong, at his 2 month well baby check, the doctor checked his soft spots and thought that she felt overlapping in his forehead and decided to send off a referral to a pediatrician to see what he thought.  She never thought that it would turn out the way it has.  When he went back for his 4 month check she thought that it felt better.


When Lucas was 4 1/2 months nearly 5 months, we were at the pediatricians office to see him about his head.  Well after a little assessment we got a referral to a neurosurgeon at the hospital for sick children (sick kids) in Toronto.  We made another appt. with the pediatrician and waited for and appt. at sick kids!


At 51/2 months, now the middle of March, we (myself, Lucas, Nicholas and my parents) traveled from northern Ontario, north shore of lake Huron, to southern Ontario, Toronto.  On this 7 hour trip, with 2 5month old children, we get just south of Barrie and what do you know we hit snow, not the nicest to travel in!!  Well we get to the hotel and check in and try to settle in for the night.  Lucas and Nicholas were so fascinated looking out the windows and seeing all the people, in the middle of china town, and the trams and so on it seemed to be the most amazing thing in the world for them, especially since coming from a small town and seeing nothing but trees!!  The boys finally settled.  In the morning we checked out and headed for sick kids and had lunch there!!


Once we got to sick kids and found a parking spot I was amazed as to what the atrium of the hospital looked like, stores and shops and little restaurant kiosks, I wasn't expecting that.  I found it very easy to find my way around where I was going.  We went to see the neurosurgeon and found out that yes Lucas has Metopic Craniosynostosis, as he has a ridge on his forehead and his head is now starting to look like an egg, and that we need to see a plastic/cranio-facial surgeon now too. OK great another trip!!  That is all I was thinking!!

Well we got away from Toronto and on our way home, I got home and researched and researched and while in Toronto I was told that he needs surgery to fix his head and that it is only cosmetic.  Well the nurse in me keeps saying its only cosmetic he don't need it, and then the kid in me, that was teased as a child due to a scar on my face, keeps saying fix it now so he don't have the same ridicule you went through.


We seen the pediatrician again and by that point we have decided that we would most likely be getting this surgery for Lucas.  He seemed satisfied and that when we get a surgical date we need to inform his clinic so he can see Lucas again after the surgery!!


Well in early May we saw the Plastic surgeon, they travelled to sudbury from Toronto, and we informed them that we would like to have the surgery done.  So a week after that appt. I got a phone call saying that the surgery is booked for Sept 14, 2011 and that Lucas needs a CT scan and opthamology appt and anesthetic appt.  All of these have been booked for Aug 4 & 5, 2011 just so we don't have to make very many trips. So this is now a little over a month away for the CT and all those appts then 6 weeks later is his surgery.


I was really struggling with the fact that it is such a major surgery that one day I went in to work, still being on maternity leave, to speak with my boss, just to talk about it, and she said something to me that I think really helped ease my mind.  Being a nurse we see lots of just cosmetic things and one of them is a cleft lip, she then said to me if he had the cleft lip, just the cleft lip, would you get it fixed.  Answer, Yes of course.  Then that is just cosmetic!!  I guess that once I realized that the word cosmetic means that it is being fixed for looks I think the word should be something else.  So Just because its "cosmetic" doesn't mean that it is not needed or necessary!!! 


So one day I was looking online and found one of the best websites out there and I'm so grateful for it because it's the support I have been looking for in all these weeks of "I need someone to talk to who has been through this and knows what I'm about to go through"  It has provided me with information and some friends who have been to sick kids and used the same doctors that Lucas will have, and it has allowed me to see what my baby may look like immediately after surgery!!  Craniokids is great!!