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!!