Just another manic monday - The big Surgery Day

Here it is the first day of the new year, that seemed fast somehow. I am hoping that 2011 has some exciting new plans for our little family. Monday is fast approaching, Eliot will be going in to Boston Children's Hospital and Dr. B will be re-implanting his ureter on the left side. It will be a 3 to 4 hour surgery and hopefully minimal recuperation time. It is less invasive than thought before as they will be going into his bladder from the outside in, not the other way around. After a long, long day at the pre-op. appointment on Thursday Matt and I felt confident about Eliot's procedure. I still feel confident but now that it is so close I am a little worried for our boy. I am sure he will be fine blah, blah, blah. But that is our little boy and it is scary.

I will be staying at the hospital with him and I am really hoping that he will recover well and not feel too much pain. I have been reading about bladder spasms that can occur in these types of surgeries and I am keeping my fingers crossed that he will not be one of the ones that it affects. They are super painful and require different meds. for pain management. I am just hoping that our little boy's left kidney will stop being damaged by his urinary reflux and hold onto the 12% function that he has. Some is better than none in this case I am told. Nana aka Shirlee will be staying at ours to help with Henry and the go-between times. We would be completely and utterly lost without Nana and Papa.

I am wondering if we will go in when he is being put to sleep? I have been there for Henry a number of times and while it can be a little weird watching your child fight the mask and its effects, I feel as though it is better they see you before they go to sleep. I can hack it if he can, right?

Pheeewww, I have been writing my crazy little O.C.D. lists and pre-packing all of our things for the hospital. I have made lists of what to do with Henry while we are away, lists of what we need to pack, lists of lists to write, I have made checklists and more lists...I am beginning to realize that part of my coping mechanism in these strange times is the illusion of control. I micro-manage everything that is within MY power in the hopes that everything else will just follow suit. Yeah, I know, a little crazy. But hey, whatever works.

Matt is the only person I could ever do any of this with, really, all of it, which is a lot of "this", trust me:) I think back to the moment I knew that I was falling for him and I said that if we got together it would be something "serious" and I was right. Marrying your best friend is awesome, maddening at times, but mostly awesome. Knowing that we have each other throughout all of this makes it okay somehow - that and our two super cool boys. They are tenacious as hell, ha:)

*Updated blog - check

* Felt cathartic release - check

* Ummm, you get the idea:)

R

Fa, La, La, La...Crafty Craft:)

Yeah! I am friggin' crafty Caroline, cookin' Claudia, glittering Gladys - well, you get the idea:) I have ( and by I, I really mean Matt and I ) got Christmas done - inexpensively and quite beautifully if I may say so. With our limited resources this year we decided to go for the "handmade" gifts. I know, you are thinking badly knitted things and hokey religious mangers out of popsicle sticks - no, no my friends.

Be prepared to be amazed and astounded:

Numero 1, Ze Paper Ornaments :

Made them with the kids using construction paper and basically anything red coloured! We tore up the paper, put it in the

blender with some water, and

formed them into shapes using cookie cutters. Then bake, voila!

Here is the link for the instructions:

http://www.playcreateexplore.com/2010/11/recycled-paper-

christmas-ornaments.html

The next thing we

made were rainbow crayons. I truly love this one. We melted crayon bits in muffin tins mixing gorgeous colours

together and popped them out in a round shape. Awesome for kids, fun for adults to make!

This one we are doing again!:

http://dohdums.wordpress.com/2010/09/02/tutorial-kid-friendly-crayons/

And of course we did the cookie thing, Martha Stuart cookies this year a la cocoa ganache, oh, excuse me:) The kids made the roll cookies with us, they mostly wanted to eat everything. It was really a lot of fun:)

I bought some little things form Target and put it all together with some tissue and love, check it out:

Love it,

Merry Christmas and Happy Holidays:)

"In times of stress be bold and valiant" - Horace

Christmas is in full swing, which as most know about me, is fantastic as I love the holidays!

I am trying not to let everything going on both before and after the holidays taint my enthusiasm while Henry has his last eye stent removed on the 21st. It is good to finally be rid of the stents but he needs to be put under, not so good. But he will be all done with the darn eye things after this:)

Eliot's big surgery is looming but Boston Children's Hospital sent us quite a substantial preview and we have a pre-op date that will last hours apparently to discuss all the stuff involved.

I have to admit that I have a bit of a cry every now and then to release all of the internalized worry and stress. Sometimes I just feel as though I need somewhere to put it all and I don't want to worry my own family. Hmmmm, I feel as though this is a bit of a mom thing, no?

I have taken up "Zumba" at our local Ymca and I think that helps, as does the sauna and steam room.

When the chips are down I tend to "circle-the-wagons" and keep my head down, I am trying to juggle - more like balance, all the hard with some of the joy of this time of year. Mostly I try to quiet my mind so that I can relax for a moment and breathe.

When Henry approached me with his plastic pink cup saying, "Coffee? Hot?" this morning it was really, really hard not to just be so happy that I have these two boys in my life - wait three boys, Matt is pretty awesome these days:)

The more things change...surgery date has arrived.

Not what we thought, but still there is some decision that has been made. Dr. B called tonight, prime-time dinner hour which for us is around senior citizen dinner time, five ish. Dr. B said that he talked with his five colleagues and that they had overwhelmingly voted for ureteral re-implantation surgery on the yucky kidney:

http://www.ucsfbenioffchildrens.org/education/ureteral_reimplant_surgery/index.html

So, we are going to try and preserve the last little bits of function that it has instead of just eighty-sixing the whole thing. The weird thing is that we hung up the phone and later on got a call to get the whole thing moving. So, we are on for January 3 and we are thankfully going to have a big preoperative chat with all the people we need to talk with at the hospital.

My first reaction was to cry, the eyes watering, this is all happening kinda leaking crying and Matt hugged me back into okayness. I think this is good, it is nice to be doing something and to feel as though we are working for Eliot now. It is scary, I am terrified, but also feeling good that Eliot may be able to have two kidneys in his lifetime even if the one is a lot less.

On another note, Christmas tree is up, smells great and only one ornament broken. Tree 0, kids 1. The boys are so excited and have been actually saying, "Shhhhhhhanta", I love it.

I will try to keep posted and to tell everyone that I can feel the cyber support, thanks:)

Merry- Merry

La deuxieme partie

Well, it was all very anti-climatic really, Dr. P had not received the necessary info about Eliot's test and was very: it could be this but if it's not then we can do this, or we can not...

Yep, less is not more right now! Anyway, looks like the molars have begun to invade both Henry and Eliot's mouths and they are not happy (read: Matt and I are not happy). It is really hard to console the inconsolable; nothing is working it just hurts Mama and Dada!!!! We are not opposed to tylenol or anything that stops the pain, still, they hurt.

We are trying to be optimistic about life and things in general but I must admit I am feeling more Bitchy Barbara than Susie Frickin Sunshine, that is okay, that is life. I went for a pedi today which somehow seemed to make things a little brighter. Something about bubbling warm water and polish that can pick a girl up.

I am looking forward, looking up, trying to see the light at the end of the proverbial paper-towel roll.

The Next Big Thing

Eliot had his big mag3 test with lasix and it looks like his kidney is not doing well at all. Matt and I were more than a little shocked that his function had gone from 19% to 12% in a matter of months! It looks as though the reconstructive surgery they were going to do is not going to happen, instead they are thinking that they may have to just take out the left kidney totally.

Pheeewww, it is so scary!

Dr. B was so kind and patient, we are pleased he is working with us now. Our only thoughts are that Dr. P ( the other doc) may have been to able to save the kidney? Maybe, maybe not. We are going to talk to the nephrologist on Friday, more answers.

All at once we are relieved to know what to expect and scared at the prospect of what is to come. Knowing is key, knowing is what we wanted.

Both boys are chunky-monkeys and doing well, Eliot seems to be a little traumatized by his test more than a little white-coat shy. I keep telling myself that we are doing what is best for him, but it is hard when you see your child so upset. Matt standing by my side and sharing in the experience was so good for both Eliot and I.

There are times when you know the universe is conspiring, that things happen for a reason. Matt being home has been really lovely for the kids and a support system for me. I was joking with him talking about how when he does go back to work I will be spoiled:)

We have not let the hurdles slow down or dampen our holiday spirit. Christmas is my favourite Holiday, we are excited to have a great one this year. Albeit Henry will be getting his eye stent removed early December, it will be the last one. I think that Eliot's kidney will happen later on, we shall see. While I am teary at times when I really take time to think about all of this, I try to think of all the people and things that our family is graced with: love, generosity and kindness from everywhere. This, my second Thanksgiving in the United States, is a time to reflect on things I am grateful for and there are many people and many things to count. They can fix what Eliot has, we have family and friends that are standing so strongly with us. We are not alone and we are not bereft, we are loved. How lucky are we?

Fresh Santa

Just a few short days until Eliot will get another mag3 nuclear med. test to determine his kidney function on the left side. Dr. B., the new and improved doc, will be giving us answers which I am both relieved and scared about. I guess watching your baby have to go through tests and lots of poking and prodding makes any mother feel a little circumspect.

My favourite time of the year is approaching, yes, favourite is spelled with a "u" , kay? Christmas! We are getting ready for our big boys to visit what we have come to know as "Fresh Santa", the big guy who we sit on and visit with at the mall in November instead of later, mostly because he is fresh. He is not in mid-december, lines of kids, too many sips outta the old flask, who knows! When we see Santa he is all fresh, pressed and ready to rock Christmas. So, yeah, Fresh Santa this week hopefully:)

Matt and I are poor, poor, poor and our lovely kids don't know and are not lacking for much. We are okay, pressing along and keeping our heads above the proverbial water. Fa, la, la, la, la.