Day 5

Today was another hard day for us...or maybe just me.  We did not have big plans other then eating, drinking and walking.  We had a few visitors this morning...then things took a turn.  Mark was having a rough day.  I guess I would say this is more emotionally then medically.  He becomes very grumpy at times.  We believe this is caused by the Ativan he is taking.  We are still unable to wean him from this due to his daily seizure medications still on the low side.  The level came back low again today.  The neurology team hopes for it to get to a safer level soon.  Until then god help us!  I think we will find a new little boy when we get his medications in order.
The kidney is doing well!  We still have good urine output.  Now it is a juggle to get medications balanced.  We were told  this would happen and the doses would change A LOT before we go home...and continue to change after that.  It is so important to keep the levels where they need to be, so we can keep that kidney for a long time :)
This afternoon I decided to take a break for a bit and head home...that's right home!  I needed to get out and clear my head so I could be fresh for Mark.  I went home to shower and do laundry.  Mark also wanted his baby and a game from home.  It was nice to be there for a few hours.  I also folded laundry, took out the trash and a couple other small projects.  Evy also came by with some food from Auntie Julie...Yummy!  I enjoyed my time.  This may sound weird but for some reason the smell of home recharges me...and you don't know it or miss it until you smell it again.  It just makes me feel whole again.
While I was gone Chris had a chance to talk with the surgeon.  He said we should expect the urine catheter to come out tomorrow.  Then next up will be back to the OR maybe on Friday to remove the chest catheter.  That procedure on Friday will make it all real for me...the dialysis catheter will be gone.  It's a moment I feel like I have been waiting for.  Also it is bitter sweet, we will miss the Nurses and friends at dialysis.  They have become a second family to us.  Change is good...and we will remain friends!

Happy moment for Mark!

Sleeping with Baby Fake...he made me bring her in when I went home!

One last thing...I was excited to hear Adele was in the city today for her procedure at Mass General.  I'm hoping she recovers quickly, and heads over to Children's for a visit with the Transplant kids!

Post Transplant Days 1,2 ,3 and 4

Thursday was a day of mostly bed rest.  We did have to leave the room for a quick scan.  Mark was able to slowly start water by mouth.  We started with half fl. oz. and moved up to one full one.  This equals out to be  30cc per fl oz.  Every bit he put in was taken away from the IV fluids.  All the fluids are counted very carefully to make sure it is all coming back out!  I think by the end of the day Thursday he had around 200-300cc by mouth.  He still did not eat anything.  He was able to stand Thursday night for a total of 5 minutes.  This was exciting day for us...we went to bed with big hopes for day 2!

First Kidney Scan! (The big white glowing dot on the screen is his new kidney)

Water Time!

Friday Day 2:

Friday we spent most of the day in bed.  He seems to have more strength as the day went on!  He was able to eat and drink.  All fluids were received by mouth!  This was exciting...The doctor increased his fluid amount because he was doing so well.  We went from 1200cc to 1500.  We were so happy and we knew Mark could do it!  He ate lots of pasta and sauce and drank his water.  It was nice to see that he was eating and drinking so well.  He was also moved to the chair for a change...I think he enjoyed that.

Sleepy

Saturday Day 3:

We woke up with big plans on Saturday for Mark.  This is the day he would drink more, go for walks and start to really get better.  Well that is not how it all worked out.  Saturday had to be the hardest day yet.  He did not want to walk at all...his appetite was just okay, and his fluid intake was awful.  I should also add that he was not the most pleasant child to be around as well!  

The doctor's had said it can be a roller coaster but I thought for sure Saturday would be great.  Saturday morning we could barley get him up for a weight.  That had a little bit to do with the Ativan he is on to control seizure activity.  When the doctors rounded we discussed trying to make a plan to lower the dose and get him up and moving.  We cannot lower that dose until we get his daily seizure meds to a safe level.  The level dropped because he was pulled off of these medicines for transplant.  Finally there was a plan in place to give him a boost in his daily meds by IV.  Then we would lower the Ativan slowly over a few days or a week or so.  He seemed so tired he just couldn't do a thing.  We were also faced with the issue of his blood pressure was rising along with some other levels.  It just seemed like everything was going against us.  We were reassured by the team that the expected this to happen.  They are currently adding medication to fix these issue.  They seem to not be worried at all about anything.  They are happy with the way things are going...so I guess we have no need to worry for now!  After a long day Saturday we headed to bed on the early side...that was a good choice we had a night of little sleep.

Sleep..Sleep..sleep!

Sunday Day 4:

Today has been another day of highs and lows.  Mark woke up a bit on the irritable side :(  After a long night of getting up on and off I was feeling a bit grumpy too!  Once he was up we tried to get some breakfast into him.  He didn't want his bagel (you know he's not feeling well if that happens) he told me the oatmeal was gross..even loaded with brown sugar!  I was ready to call it a day and we were only a couple hours into it.  Lucky for Chris and I some special visitors showed up and his mood changed a bit.  When the doctors did rounds this morning things seemed good.  The surgeon said his kidney is running great and he is doing great with his urine output.  The Renal doctor said everything was good as well...The main issues for now our his high blood pressure and low calcium.  They have added meds to work on this.  They are still seeming not so concerned.  We saw the highest blood pressure yet today.  This has landed him with 2 oral doses of medication and IV medication as well.  We also had a visit from the Neurologist.  She had reported that is level was still low.  The plan for today would be to give him another extra dose by mouth and check labs again tomorrow and Tuesday.  For now there would be no weening of the Ativan.  Another issue that will start to arises in the next couple days is keeping a very close eye on is Prograf level.  Prograf is one of his life long medications.  This is an anti-rejection medication.  One of his seizure medications can cause the Prograf level to lower.  The Prograf also has a risk of inducing seizure activity.  Oh boy I'm glad we are no the professionals.  

Later this afternoon we had some more visitors.  Mark was excited to see my Aunt and Uncle...They had lots of cool stuff for him.  He even did his first walk with them!  The first lap around the hall!!  He then needed another dose of Ativan

Finish of the first lap!

Medicine time.

All and all things are going good here.  It has been nice to have Chris staying every night with me.  We have a big week ahead of us.  We will be meeting with lots of different to people to help us learn all we need to learn.  I'm more stressed out taking a new kidney home then I ever was bringing an infant home.  There is a daily teaching list that is gone over everyday.  We have to learn lots of new things.  We are just starting to make the early steps to prepare for home...but I think it will at least be a week or so before we start talking about home!

Transplant Day 11-2-11

Finally it was time for Transplant!!  We were wheeled down to pre-op at about 10am or so. Almost 20 hours after our arrival to CHB.  What a long 20 hours it had been.  When we arrived downstairs, Mark of course had a crew with him. Chris and I, my parents, Chris' Mom and Rachael.  This was it...finally it was go time.  Then we were told it would be another hour.  Part of me wanted to scream the other part was thinking whats another hour?  We kept busy...Papa did one thousand sticker pages with Mark.  Some of us enjoyed our smart phones.  We had a show from the clowns.  They were tipped of by another dialysis patient that Mark was in pre-op!
After lots of paperwork and coordinating it was time to go!  We had an issue with Mark's seizure medications right before transplant.  The issue was resolved quickly.  They decided to put Mark on an IV drug until post transplant.  We will then make a plan to work on his home regiment this week.

Playing while we wait.

Mark and Rach :)

Mark was sedated and headed off to the OR.  It was finally here!  Scary but great all at the same time.  We headed out to the family area and settled down for our 5 to 8 hour wait.  Every hour and a half the nurse will call in the OR for updates.  At about 1:30 the first report was back.  He had been put under and the incision was made.  We ordered lunch and waited some more.  Just before 3 the nurse called back in for an update.  She was happy to report he was being closed up and had already began making urine!!!  We couldn't believe it...we were convinced they may have had the wrong kid...It had only been 3 hours.  Just a short time after that the doctor came out to follow up with us.  He explained everything had went well and now we would have to wait a bit before we could see him.  At about 5:45 Chris and I headed back to see Mark.  They were just about ready to transport Mark back upstairs...Things were going well!

Post Transplant...Very Sleepy!

Mark had survived the big day...He was returned to us with 3 IV's, 1 Catheter (down below), 1 Central Line Catheter(dialysis cath), Drain Bag...and a approximately 6 to 7 inch incision area all bandaged up on his left side.  Underneath that incision contained 1 New Kidney!

Where Were You On 11-1-11?

Tuesday morning was a little different then most days in our house.  Mark had no school, Chris was working from home and I was trying to figure out what to do with my day!  Mark and I decided to take a trip to BJ's.  Off we went to Leominster.  On our way out Mark spotted my Aunt and ran up to get her.  We chatted outside the store for a few minutes.  That was when we got the "call".  I had always thought we would get the call at night.  I was a bit surprised...Of course crying and panicking at the same time!  My Aunt helped us put our goods in the car, and off we were to get Chris and head to Boston.
When I answered the phone the nurse had said "It's time"....and I remember saying "are you serious?"  then I proceeded to tell her I was at BJ's and she told me to get dressed and come in?!?  She thought I said I was in my PJ's...hehe!  So from Leominster to Littleton, we packed our bags and off to Boston we went.  We made it to Boston within an hour and half of the phone call.

All packed and ready for transplant.

When we arrived in Boston we headed straight up to the Dialysis clinic.  This would be Mark's last dialysis treatment for now!  The only way that would change is if he has a sleeping kidney post transplant...and/or he needs another transplant down the road.  For now we can say it was the last treatment!!

The end of the last treatment!

While Mark was having his last Dialysis treatment he had some labs done and I headed to admitting.

Once treatment was done we headed up to 10south to get settled and wait for the go...This was around 6 or so Tuesday night.  Then the waiting game began...we waited and waited and waited.  It was rumor that we would go to transplant late Tuesday night.  We had company to keep us busy for awhile...

Talking to Uncle Den

Sad attempt to capture us together!

We were with My parents, Chris' parents, Evy and Bobby.  After waiting for a bit we all started to fade.  Some headed home and the rest of us tried to go to bed.  We just had no idea when we would get the go!

Night Night

I was up almost all night. Every time the door opened we thought it was go time.  At about 3:30am I gave up and tried to sleep.  Around 5 or the Doctor came in and said it was still a go and he would see us in a few hours :)  That gave me hope again.  They told us from day one we could get to the hospital, they could send us home because it wasn't the best fit.  That is why I was stressing as time passed.  Although we ended up in transplant around noon time it was all for good reason to wait.  There was a transplant just before Mark.  The other kidney was going to one of his dialysis friends.  Two happy families in one day.  Of course feeling grateful for our donor and hoping that family understands the gift they gave us.  I'm truly hoping they are at peace with their decision...we will never be able to express how grateful we are feeling.

10 Months

There is one good thing about all of this waiting...We have had the opportunity to not miss out on much this Fall!  My fear...spending another Christmas at Children's.  We were told he could be listed up to 100 days.  100 days will be on November 9th....That is close to the start of the holidays.
Tonight we will celebrate 10 months at the Franco in Westford.  A family friend is hosting a fundraiser for Mark.  Mark just keeps on saying he is so excited to dance the night away!  It will be a nice distraction to see people and have a good time.
Let's just hope I will be blogging about transplant when we hit 11 months.  Please keep your fingers crossed!

Field Trip Day earlier this week!

Thinking About Christmas

Yes I said it...Thinking about Christmas.  There are lots of reasons why this wonderful holiday is crossing my mind.  I know.... Can we get past Halloween and Thanksgiving first?  This all stems from the dreaded Endocrinology appointment and the "Toy book".  First the toy book (as Mark likes to call it).  Mark came off the bus with a toy catalog from the bus driver.  He wouldn't stop looking at this magazine.  He kept on saying "Can I have this from Santa?"  So I gave him a pen and told him to start circling.  He did..happily!  I thought the entire book would be circled when he finished, but to my surprise it wasn't to bad.  His prize possession out of all the toys in the book...The Tea cart.  Yes The Tea Cart.  I wish I could find the book so I could take a picture of it, but I bet Mark is sleeping with it at the moment!  It is a red cart that comes with tea cups, a tea/coffee pot, dishes..ect.  He thinks it will be fantastic to be able to serve his Mom and Dad tea and coffee on Christmas morning...and many days to come!  The book came home almost 2 weeks ago and the Tea Cart is still the favorite!
Moving on to the appointment.  I was dragging my feet not wanting to go to this appointment last week.  The Renal doctor had suggested we go to the Endocrinologist just as a check in due to his labs being off.  When we arrived the first thing the doctor said to me was "Why are you here? The doctor that sent you did not send a referring note".  At that moment I wanted to scream!!!  So I explained to her the highs and lows in his lab results.  She looked at me and said "Well maybe if he had a kidney that worked this wouldn't be a problem".  At that moment I wanted to high-five her.  I controlled my self...I thought it my be a little wrong...but I was happy to hear that was her solution!  These levels we are looking at have always been a challenge for him, so it's no surprise to me that we would see bigger spikes in drops with his current state.  Moving on with the appointment she brought up another subject...Puberty.  I wanted to crawl under my chair..I know childish...I'm a mother I can had this!  As I stare at my innocent sweet little boy that really only wants a Tea Cart for Christmas, I'm not grasping the conversation.  Needless to say I will spare you the details, but the process has begun.  It just seems weird that Santa will bring a Tea Cart this year and replace the bubbles in the stocking with deodorant.  God who knew parenting could be so rough!

Celebrate 60?

I always wonder about others, Is your glass half full or half empty?  I hate to admit it but I'm for sure a half empty type of gal.  I was thinking about this after I had a conversation with a friend last night.  When I think back at what I said I realized how negative I sounded!  We were talking about Mark (of course) and his progress.  He was saying how great Mark looked, and how positive he seems.  Then we started to chat about the wait...and the phone call.  I said "Mark has been listed for 59 days, tomorrow will be 60."  Then I mentioned so crap under my breath, "Not that I'm counting!"  Who I'm I kidding...I am counting by the minute.  Then I started to complain about how long it's been and how this all needs to end...blah, blah, blah.  We had talked about when Mark was listed they said the wait could be up to 100 days.  I'm feeling at this point will surpass that milestone.  I thought we would only wait about a month or so!  While this conversation was going on He just looked at me and said "You guys are so close, only about a month left, it could happen anytime now."  He is right.  Yes Mister half full...you are right!  I thought about this last night...I am seriously such a Debbie Downer.  I think I have come to terms with being a half empty girl.  I remember as a child playing with friends and cousins, and asking that same question to each other.  I also remember my answer..it was always half empty.  This is something I need to change...NOW!  So thanks to my friend I have realized I need to try to be positive.  So today I will celebrate 60 days.  We have come so far and will not have to wait much longer!  With hopes that my glass will be half full one day!

On a side note while I was writing this I looked at Mark and said...."Is your glass half full or half empty?"  With a big grin on his face he looked at me and said...."Half full!"

Growing Old

Sometimes I struggle as a parent.  I often think to myself would it be easier if Mark wasn't who he is?  On other days I think that things are a breeze with him...and thank god things are the way they are.  Mark has an innocents that is truly amazing.  He talks about Santa almost daily.  He loves the change of every season, and the excitement that comes with it!  For most New Englanders that last only the first couple days of the new season...but not for Mark.  It could be the 100th snow storm, and it's just as exciting as the first one!  


Like every parent I find myself questioning everything I do when it comes to my child.  Who ever knew it could be so hard?  As a parent you provide everything for your child until they become an adult.  Could you ever imagine what you would do if they didn't grow up?  If you asked me that when I was holding my newborn...I would have said " Are you kidding me..that doesn't happen!"  Well it does, and we are living it in our house everyday.  Mark was diagnosed well after birth..so for a long time we were blinded and had no idea what road we were going to travel down.  Here we are 12 years later.  Yes 12...We will have a teenager in our house next year!  A teen that still loves Barney and PBS with all of his heart.  At times I'm so grateful that we won't have the worries of when he's grown up and is out on his own.  Other times I feel angry and sad.  I want Mark to have friends and girlfriends..I want him to drive and be independent.  I just don't see that happening.  He has come such a long way...further then any doctor had thought.  As he gets older I have come to terms with what his adult life may be like.  It will be amazing for him...I know he will always be happy, and we will always have joy in our home.  I know we are not the only family that is going through this..but sometimes it sure does feel like it.  I have these thoughts often daily:  What happens when Chris and I get old?  Who will be there for Mark?  Who will know all the little things about him like we do?  
Whenever I leave him now, I have the same feeling I did when he was an infant.  That will never go away.  
I guess this all stems from realizing were growing old and evolving as a family.  We are different as a family unit then we were 5 years ago...for the better I'm sure.  It also doesn't help that I fear growing old.  If I could stay young forever I would!  So maybe that's it..Mark doesn't have such a bad gig...I shouldn't feel guilty.  He will be forever young :)

9 Months

Well It's been 9 months....That is almost a year!  I have to say the time has gone by so fast, but so slow at the same time.  We are ready, ready to be done.  I'm sure that I'm on repeat mode at this point...But its getting old!  
Mark has been listed for 53 days now.  The doctors had said it could be up to 100 days.  The good news is it's just coming sooner day by day.  I just never thought we would wait this long!  About 2 weeks ago the doctor had told me he anticipates Mark going into transplant in the near future.  Of course I ran home packed everything, cleaned my house from top to bottom.  I was sure it was going to happen that weekend...not so much.  His definition of near future and mine are a bit different.
Other then waiting we have not been up to much.  Working, school, hospital and home.  That is our story right now.  Pretty boring, which leaves nothing to blog about!  I do get more and more anxiety as the days pass.  Transplant will be exciting, we will finally begin our long road to recovery.  It will feel nice to have a different schedule.  I also fear the long winter I will have home with Mark being cooped up in the house.  If I survive this recovery I can do anything :)

September 11

First Pat's game of the season!

Brushing up on his presidential knowledge.

Mark's Art Show

Hanging with Celeb's....Just another day for Mark :

Pictures!

Here is what we have been doing:

Revolutions Game!

The Game was fun...but we couldn't help but wish we were at the Pat's game :)

Mark was not the best driver...as you can see Alex is not thrilled

Dialysis

It's fun to have a friend with you!

Snuggling at home

We packed our bag..ready for the call...

Hanging out during the hurricane

The hurricane hit the inside of our house :)

We have been busy and tomorrow is back to school!!  I think we both can't wait.  We also filled out paper work to start tutoring at the hospital, while on dialysis.  I am trying to be upbeat these days, but it's been a long month.

A Message From Leah Brown

A blog from a family friend: 

As you all know Emily, Chris & Mark are waiting anxiously for a special phone call from Children's Hospital, for a new kidney for Mark.


While they wait I, Leah will be hosting a fundraiser to help support the Kane family during the recovery process after Mark has his transplant.


Mark is a very special boy to all that have had the pleasure to meet and know him.  All help for this fundraising event will be greatly appreciated!


Fundraiser Details:


Place: Franco American Club, Westford Ma
Date: October 22, 2011
Time: 7pm - Midnight
Tickets: $10.00
Door Prizes - Raffles - 50/50 - Cash Bar - Music


This will be an Avon exclusive shopping event to help raise money for the Kane family.


All Proceeds from the sales will go towards the fundraiser.  If you are unable to attend this event your ticket purchase will still greatly support this event.


For Tickets please contact:
Leah Brown- 978-772-3846 or leahbrown4@comcast.net
Rachael Cerullo- 978- 828-9363 or Rachc1182@hotmail.com
Tamar Vernatter- 978-514- 1837

There is also an online event you can visit to help with this fundraiser.
When you click on this link please go to online events, this will bring you to the Mark's Our Boy fundraiser.  Help me reach the goal of $5,000.00 for this event. 
 PROMO CODE : mark2011
www.youravon.com/lbrown3063

8 Months

Can hardly believe 8 months is here!  We have been busy the last few weeks.  Mark has been out of school and we have had Alex (my nephew) a couple days a week.  We have been playing hard, going to dialysis and I have been working.  It's been hard to find a balance.  We have had a busy schedule with events for Mark as well.  He received a trip to Gillette to attend a Revolutions game, a trip to the zoo..and yesterday a trip to Canobie!  At least he will have some good memories of this summer :)  I have lots of pictures to post later as well!
On the medical front things have not been that great :(  We have been listed for 25 days now!!!  That is exciting because I feel like each day that passes we are one day closer!  I'm not sure if you remember the dreaded PTH level...well it's back!!!!  I was promised they would not draw that level anymore and just watch his calcium levels a little closer.  Well there was a change in plans...The doctor that was on this month said it was necessary to watch the level.  Of course after the first draw it came back over 1000.  The second draw...same thing.  I thought that was going to push me over the edge.  At one point the listing doctor has said if the level spikes he will be removed from the list.  The first chance I got to speak with him I did.  He said at this point Mark will not be off the list.  My fear is that he is the doctor that gets the call when they have found a possible match.  He can refuse the organ or expect.  In his eyes if Mark's levels are  compromised then he could bypass an organ...and we would never know.  He claims that is not the case...but how do we really know?  Also when Mark's levels have spiked on and off ( they have been this whole time) and they can't figure it out, it seems to feel like it's an automatic parent blame.  I can say I'm not the only parent that feels that way as well.  Only with certain doctors.  Most recently when this happened I was a bit rude to the team.  They ended up eating their words...I feel as if I'm a pretty involved and dedicated parent to Mark.  It just kills me that in a moment they can make me doubt myself, and how far Mark has come.  We are lucky to be working with the #1 Children's Hospital and #1 Children's Kidney Transplant Team in the country.  That is no joke.  I wouldn't want my child to be anywhere else...and to think it is practically in our back yard!  When I run those stats through my head I try to forget my frustrations...sometimes it works, other times...not so much!
On a happier note there has been so excitement around the dialysis clinic this week.  There is a small group of kids that all became sick in December with Mark.  We have grown close as families through all of this..these are people actually go through exactly what we are.  One of the kids was listed on the transplant  list around the same time as Mark.  He received his call late Tuesday night!!  Also one of the girls went in yesterday for planned transplant!  I can't wait to see her today and get all the details...I did receive a text late last night from her mom.  She said it was a long day, but a success!  We also have a friend that will be going in for transplant in 2 weeks!  If we don't get a call soon, we will be the last one standing in the group we started with.  It's funny how it all works out, because we all thought Mark would be the first to transplant out of the group!  I'm happy that these kids are starting their journey to recovery (it's still a long road ahead)and we will be right behind them!

It's Hard To Wait

After work today the doctor's called for monthly rounds on Mark.  They reported that everything is good!  No med changes for the first time in months...finally.  His numbers are all good after treatment, that is a relief we can stay at 2.5 hours for now.  The only questions was if his dry weight is up...I think it is, he is eating out of control these days.  They will determine that over the next couple weeks.
Activation was only 2 days ago.  It has been 2 very long days.  God I hope this does not take months.  I can't sleep, my appetite is down(not a bad thing), and I can't stop thinking about what this is going to be like.  When it will happen, if it will happen with the first call, will it be day or night.  I find myself so distracted I can't get out of my own way.  I'm on edge and have no patients..so look out!  I haven't packed a bag, just mentally I think about what I will need.
 It's just a little harder then I thought it would be...Our gain will be a loss for another family.  I find myself wishing that the call will happen every hour that goes by.  Then I think about what that other family will be going through.  The donor has to be 35 or younger.  That is a short life.  I will be so grateful that family will be making the decision to save my son.  It makes me think a lot different about organ donation.  You don't need your organs in heaven...right? I hope that after all of this everyone I know will consider being a donor.   

Activation Day!!!

It's so exciting that Mark is officially on the list!  As of this afternoon he is activated..it almost feels like a holiday..or at least a huge milestone.  Now it's just the waiting game.  My stomach will do flips every time the phone rings.  We can be waiting anywhere 12 hours up to 100 days.  I just hope it happens sooner rather then later.  The sooner will give Mark the opportunity to actually attend school this coming year.  I guess this is when I ask everyone to do what works for them...say a little prayer, keep your fingers crossed..whatever let's just get this show on the road!!
I told Mark this morning that  it was activation day.  I said "That means at anytime day or night we can get a call for a new kidney."  He responded by saying "I'm so excited I will be able to stay on 10 South and play in the playroom when I get a new kidney."  He made no mention of less trips to Boston, being able to swim, bath, go to Disney.  It may seem sad to some, but he loves that hospital and all the people that have touched his life in many ways.  He gets treated like a king!  That is easy to do, he has a curiosity for life like no other!

Happy Anniversary

Today I'm thinking what a lucky girl I am!  Even though Chris and I have been together for a long time, we were married just last year.  Not that I thought things would change dramtically with marriage, but it kinda does...if that makes sence to anyone.  Over the last year things didn't go quiet as we expected!  I honestly thought around this time we would be expecting the arrival of our second child...not a kidney..hehe.  It's also funny how things happen..timing is everything.  I think this last year has grounded us a little bit, and helped is focus on the important things.
I wouldn't or should I say couldn't have choosen a better partner for this life.  Chris keeps me grounded, he loves unconditionally, and will sacrifice anything to provide for us.  He is a stand up guy.  I'm sure every women would say that about their signifacant other.  It's the truth about Chris.  I'm excitied to get Mark healthy and live the life we have ahead of us.  This is just one long year out of many.

Happy One Year!

Ready to Travel

Trying to get ready to travel for the weekend has been a task!  I have written a full Mark manual. I do not think I have forgotten anything...

If I have forgotten I am sure they will figure it out!  We even gave Papa (my dad) a tour of the dialysis clinic today.  He works close by and was able to stop in.  My parents will be handling dialysis on Friday.
Mark has had a good week at dialysis and we are officially at 2.5 hours for treatment!  I have to say it has only been 3 days of this shorter schedule and I love it!  Next Tuesday will be here soon and Mark will be activated!  I am hoping the wait will not be long...we will see what happens.