Friday, May 29, 2009

We have DATE!!!!

So we got a call last night about Hunter's Fontan surgery.
He has a tentative date of June 30 or July 7 . They are going to confirm the date later today or monday.

On one hand I am finally releaved that we have date, BUt also torn because I don't want to see Hunter go through any more surgeries. I know He doesn't really have a choice, But it leaves this pit feeling in my stomach. No mother want to see their child in pain.. Especially after they have endured more in their two years of life, than most people do in a lifetime.

So I guess we will start to get ready for the surgery, and I will try too get some stuff around here done.

WOW... 1 month away... and I hope after that we will have a good recovery and be living post fontan. ( I heard it is great ) I sure hope so.

Wednesday, May 27, 2009

Where has the month gone????

So this month has gone by very quickly. It has been full of appointments for the kids. We are STILL waiting for a date for Hunter's next surgery. As we just found out, He was only presented for discussion on May 25.. A full month after his cath... agh!!... So we are waiting to hear what they have planned..

But as far as what has been going on, Hunter has always been a boy who loves trains, figurines . So this month when I bought a bunch of trains for him ( off the Internet- really cheap ) he was ( and still is ) very EXCITED.. He played with them non- stop for hours and hours

A funny story to go with picture... I was up stairs getting the other kids ready for bed ( and as always ) Hunter was watching TV downstairs. Or so I thought. After about 10 minutes i go back down, and I couldn't find Hunter...mmmmmm......
But the was one of the black storage boxes on the floor in front of the TV.... So after running to get the camera, lifting the box with one hand and taking a picture with the other, this is what I found....LOL... Hunter asleep under the box... Sweating, and curled up in a ball... it was so frigging cute...

Well with the month almost over, the weather has been getting warmer. And with that said, out come the summer clothes and hats. Although really not warm enough yet for shorts..

I got Hunter a new bucket hat and I must say that it is really cute.

mmmmmmmmm...... Well I finally got a laptop, ( which I am using right now..) LOVE IT... But the best part is that it is really good for Mackenzie. It has a tablet writer program on it for her. Meaning she can use a pen and write on it and it will change it to typing for her. or she can use the pen instead of a mouse.. She has been using it to write some of her words out. SO FAR SO GOOD...

SMILE, CHEESE.... let me see mom!! That is Hunter new thing.. can you
He wants to have his picture taken and then see it right away.. Thank goodness for digital cameras. Hunter is really getting big, he is about 28 pounds now. He is eating some new foods , which is always a good thing.

May has been a busy month for the heart community too.. Gavin made it home and is recovering well. Sofia is still recovering from her transplant. And without saying it is always so sad when a heart baby dies, and this month was hard with the passing of Wyatt. ( read his blog for his full story ). I am fortunate that Hunter is doing so well, considering his diagnosis and other issues ( jugular stenosis ). I know as a heart mother that we can't take a single day for granted, But I have to learn not to dwell in the past. ( ongoing thing I guess.)

Well I must go and put the kiddos to bed.... Have a great night.
I will post when I hear more about a surgery date...

Saturday, May 16, 2009

Not Much New..

So it has been a few weeks since my last post. Sorry... I have been busy with trying to clean the house, garden ( or really trying to remove thousands of weeds from the grass and garden )
Trying to keep up on doctors appoinments and trying to find funds to raise money for Mackenzie's swim spa...

So the good thing is that not much has been going on. The kids are enjoying the warmer weather, although you still need a sweater. I have enjoyed going for more walks with Hunter , and Tristian loves going for bike rides.

I took Mackenzie to see Hanna Montana the movie last week ( mothers day ), it was really a good movie, Some really good songs, and it was a good time out.... ( not the car ride home though...). I think maybe this weekend I might take Tristian to the movies ( I still have some coupons I really want to go and see Wolverine..... anybody want to go with?????

Well both kiddos are signed up for summer camp....YEAH!!! and I am not sure what Hunter will be doing.... We are still waiting for a surgery date..... I am guessing September.... ( of course because all of our birthdays are in that

So, Happy long May 24 to everybody.. ( victoria day weekend--for my american
I hope that everyone has some good weather and gets outside.

** Good Update** Gavin is home from the hospital-- GO GAVIN GO!!! -- Lets hope that he recovers and gets back to his normal playful self...

Please remember that their are many heart families still in the hospital, please keep them in your thoughts and prayers ( Sofi, Wyatt..) Many others waiting for Hearts.

Update ** unfortunatley Wyatt lost his brave fight with many CHD's. My thoughts and prayers go out to Lisa and his Family. He was a brave little boy, and in his too short life he touched many lifes and made a difference in the lives of many without ever meeting of them. **

Monday, May 4, 2009

Back home .....

So, Many of you know. That the first weekend of May is the mom's getaway weekend. ( this is a weekend of moms to get away from the stress and our kids, to come up with new ideas and regroup...-- these are moms of special needs children, whether it is physical, mental, or severe health problems.

We get away from the crazy life from friday night to sunday afternoon. It is a great time to make new friends, reconnect with old ones, and a time to share stories, get new ideas and just relax, time to see what is truly important-- our families....

I have to say that this year was really the best bunch of people that we have had. It is so nice and humbling to be in a room of women who " GET IT". I don't have to explain my child's illnesses, they understand and except me and don't JUDGE me based on that. Many of these women although in different stages of the journey, have loads to share. Many of us have been on this journey for a long time, some have more experience ( which we learn from ) and some of them were just starting this journey. regardless of were we are, We all have something to offer, even if it is just a hand in friendship to say I am here.

So to all the ladies, thankyou for having such amazing children. And I hope we can get together before the next weekend away, that is over 361 days away!!

I learned alot from these women, acceptance, strength, forgiveness ( I have a hard time with this.) and I am still learning. I have been on this road a long time, and I have come to many forks, bends and hills, even some pot -holes, I know that it is a life long journey and that I have picked up many hickers ( friends ) But they make the travelling managable.

I hope that many more moms ( expecially my fellow heart moms ) can come out next year. you would add a great amount of knowledge and fellowship to this group, and we love having new moms...

And to a special mom ( M.) you are really a great friend, I learn so much from you. Compassion, acceptance, forgiveness ( yes... I am still working on that, it will take a long time. ), and friendship.. don't ever change, because you give me strength.. hugs~~
Hugs ~~~ to all the moms

mmmmmmmmm.... No there are no pictures.... Not that I would post

So, to all my old friends and new friends, have a great day.

And just a little side note...

Gavin is still in the hospital, He has a fever and some other issues going on, please keep him in your thoughts and that he may get home soon. ( link is at the bottom of the blog-- left hand side )

“I laugh, I love, I hope, I try, I hurt, I need, I fear, I cry. And I know you do the same things too, So we're really not that different, me and you.” ~ Colin Raye