Monday Again :(

It's Monday again....Yesterday we did nothing all day!  Mark had a little cough when he got up.  This progressively got worse over the day.  It seems like it came on fast.  After his horrible night on Friday, he was remarkably different Saturday.  You would have never guessed how sick he was the night before.  We are not so lucky with a bounce back this morning.  Cold is still here and he is back to being miserable.

Whenever Mark is feeling like this he wants me to make pancakes.  As soon as the request was made..off to the kitchen I went.  

Mark was happy to have his cake's although his appetite was on the small side.

We headed into Boston with major hesitation from Mark.  He was not feeling well and did not want to leave the couch.  I wanted to stay home too!  Once we got in the car Mark was asleep and we made it in to the city with great timing today.  

We are about 1 hour into treatment.  We have not seen the doctors yet today.  Mark is having the normal hard time with nausea, then the added low grade fevers and cough .   He is fast asleep at the moment so I am taking this opportunity to blog.   I'm hoping that he is able to sleep for the rest of his treatment.  I was also just informed that they are going to talk about the catheter issue at rounds today....we will see!

I am feeling stressed about this week ahead for many reasons.  I am wondering about his catheter.  I hate when mark is sick, I feel on edge at all times.  I can't stop thinking that he may have a seizure at any moment.  Lastly of course it's going to snow the worse on a dialysis day :(

My hope was that things we be a little more normalized by now and Mark would be back in school.  Things have just been so unpredictable lately, and usually I handle that well.  I have had to tell myself to take it day by day. That is easier said then done!

Mark's Day As A Dialysis Nurse

These are some pictures of Mark playing dialysis....He doesn't miss a step!  This is his new favorite pretend play :)  He will play with dolls or people...whatever he can get his hands on!

Note the bucket for getting sick.....nice picture Kate!

What A Long Day

What a long day....Mark was a bit under the weather this morning.  He didn't sleep well last night, complaining about body pains.  His appetite was on the lower side, and he was sleepy this morning.  I was a bit concerned but figured I wouldn't stress since we were on our way to Boston.  After our drive in Mark was ready to get to dialysis.  Mark was a bit quiet at dialysis but seemed to be okay.  Once he was hooked up to the machine...all went down hill.  Mark was very sick throughout treatment along with fevers.  This was not a good day.  If he wasn't sleeping he was crying.  He made it through 3 grueling hours of treatment.  At the end of his treatment we were sent to x-ray.  We needed to have an x-ray of his abdomen and a re-do of his chest.  The team wanted another look at the cath from a different angle.  They wanted to be sure on how far it has shifted.  This may give you the answer to whether or not they want to adjust or move the catheter???  Who knows??  We never got to talk about it today...They are hoping Monday we will have an idea of what to do.  After x-ray we were heading upstairs back to dialysis to talk about the x-rays and maybe get medication if needed for the weekend.  Mark had a different plan for our walk...A seizure.  In the middle of the most empty hall in Childrens.  I had to yell down the hall for a nurse to help!  Once we found a room to put him in and stablize him, we paged a Renal fellow to come down.  The seizure was between 6 and 8 minutes...not to long...but long enough.  Once the Renal doctor checked him out we headed back up to dialysis to wait on our labs.  We were cleared to leave before the levels were back.  The doctor is going to call me with any medication changes if needed.  We finally made it home just before 9 tonight.  Mark was happy to get in his bed and call it a day....I'm ready too!

Computer Trouble

Yesterday we had a nice day at home.  Mark was suppose to be going to school...but it was a snow day!!!  We were outside early shoveling and trying to play in the snow.  I only say trying because it is waist deep for Mark.  He would try to move but couldn't.  I think we were both so tired when we came in. I wish it had been a little more fun, because the weather was so nice.  

Evy came by yesterday afternoon to help out with Mark for a bit.  I had to get a couple things done.  They went off to the library.  Apparently Mark talked a big game...he said he wanted to go look at books and read them.  He also promised he would use his inside voice.  He made through half a book and wanted to play in the play area the rest of the time.  Evy said there was a lot of kids at the library.  They were all pretty loud, so Mark took the opportunity to call them out on not using an inside voice.  He loves to point out when others are breaking the rules.

  I had the enjoyment of going to Market Basket....I know don't be jealous.  When I got home Chris was home from work and on the computer.  I was planning on blogging right when I got home.  We had a busy night ahead.  Not sure what I did but Chris had to clean my computer out.  He had to run some scans that took all night.  So this left me without a computer.  I felt like a kid that had candy taken away.  My Blackberry is so old it takes forever to get online.  That wasn't an option.   I was glad to busy so I wasn't obsessing over the computer. 

 Also note to self:  When messages pop up on your computer...don't x out and ignore.  (This is why I want a Mac.)

Today we will be heading into Boston.  I hope the doctors have a idea of what they will do with Mark's cath.  The x-ray did come back that the catheter has shifted.   The nurse promised to get us home Wednesday.  So I promised I would be prepared for anything today.  My bag is packed and I'm ready for a stay if need be!  They may just hold of until next week to do anything as well.  It will all depend on how well his cath works today.  

Lesson Learned

I was up early today.  I wanted to get things done so we could head into Boston on the earlier side.  I was thinking that if we got here a little early it would help, since the plan was for a longer treatment time.  The nurses can't always take us early but it never hurts to try.  We did end up at CHB about 30 minutes before Mark's treatment.  Mark was hooked up and apparently not ready to go.  His alarms were going off every 10 seconds or so...at a blood flow rate of only 60.  This was not good....So they decided to unhook Mark and put some medication in his cath for an hour.  TPA was used in the catheter to dissolve clots.  They always put Heparin in his line after treatment to prevent clots.  TPA is used in a case like today where they couldn't get Mark's line to start at all.  The team decided to send us to xray while the TPA was sitting in Mark's line.  When we got to xray they did 2 chest xray's to see the placement of Mark's catheter.  We came back to dialysis and were hooked up again for the three hour treatment...we made it 1 hour and 10 minutes with no alarms...then they started again!  The Doctors are going to round at 4.  I'm hoping for a sure plan on this catheter soon.  So today is my lesson learned...I never went home and packed that overnight bag the other night.  If we make it out of here tonight...I swear that's what I will be doing when I get home!

In need of a hair cut soon...After we washed it today we had to brush it..that never happens!

Remember all that weight he lost...I think he found it!

Felt Like Pre-School Again

School Today..Mark got to go for a few hours alone!  I trust Mark's classroom staff...most of them have known Mark since he was 3 years old...They are like family.  As I drove away to hit the grocery store I had a pit in my stomach.  I was so worried about leaving him.  It felt like his first day of pre-school.  I wanted to sit in the parking lot and cry for 3 hours.  I only had to pick up a few items so my trip to the store was quick.  I thought to myself...I will grab a coffee and go park in the back of the school parking lot with a magazine.  Then I decided to stop by my friend Melissa's house...she lives 2 seconds away from the school.  It was so nice to go see her and catch up.  We use to be neighbors and became great friends.  I felt like I was at home with her...it help take my mind off of worrying about Mark.  The two hours flew by.  Glad to report Mark was busy at school...I think he will be ready for a couple full days next week.  Wait to you see the pictures of him playing dialysis at school...It also continued at home.


Stepping back to yesterday...After the doctor's did their rounds, they decided to keep his catheter flowing at the lower rate.  The nurses added another 30 minutes to his treatment.  When his head nurse came back after 4pm rounds she said they were going to do post labs after his treatment.  This is so they can compare pre and post labs.  When the team gets these numbers they will decide if he can do dialysis at the lower rate for a longer period of time.  This maybe an alternative to having to go in and have his catheter adjusted or moved.  If they are not happy with the pre and post BUN & Cr levels over the next couple days we will move forward and talk with the surgeon.  The extra 30 minutes on his treatment yesterday seemed like a life time!  I was so tired.  That pushed our leaving time out to high traffic time....we got home at 7:30 last night!  Chris worked late so by the time he was home Mark was in bed.  We watched a show and went to bed as well.

Long Night Makes For A Long Day

Yesterday was one month...it was my 45th post on my blog and we had over 6000 hits since I started.  It so nice to see how much people care for Mark.  Also as I mentioned it was Sunday...so we had plenty to celebrate.  We started our day off with company.  Tracy and Rach stopped by for some coffee and a little playtime with Mark.  After they headed out we got ready to go out.  We packed up our bag for the day and we were off.  We had a busy day of friends, yummy food and of course football.  There was also some play-doh, ipad and helicopter action in all of this too.
Last night was a long night.  Mark was up so much through the night.  He did not want to go to bed and absolutely did not want to leave my side.  It was a long night, which made for a hard morning today.  I could not move at a fast pace if my life depended on it.  We got out the door and were on the road on time.  Some how we ended up arriving to dialysis 10 minutes late?  I don't know how that happened...the traffic wasn't too bad.  
Mark once again has not had the best treatment today.  He has been sick....He finally has fallen asleep at about the half way point.  The two things that they are working on is taking fluid off at each treatment and increasing the rate.  When they increase the rate of the blood flow there always seems to be a problem.  His lines clot and he seems to get sick.  The nurse says he can be getting sick from trying to take the fluid off.  So today the lowered the rate and are not taking fluid off.  This is a problem.  The rate needs to be increased to have more success with his treatments.  After talking with the doctors today they feel as if the nurses are   exhausting all options to give his lines success.  If they can't increase the rate of the blood flow, the doctor mentioned coming in for longer treatment time.  She also said they do not want to do that for  long period of time.  In the end off all this chat, they have decided if we don't a successful treatments this week they will be going back to talk to the surgeon.  They hope that if we go in for surgery again we will be able to use the same catheter.  If not they will move it to the other side of his chest or to his neck.  If they can use the same line it sounds like it will be a quick thing.  The nurse had mentioned they go in and just adjust the placement a bit.  I am not sure how long a hospital stay would be for this...but after seeing the doctors today I'm going to pack a bag and keep it with me just in case!  I can't wait to get out of here today...I hope that Mark sleeps tonight because he has been sleeping for awhile now!

Yummy dinner...

Mark pointing to his cool mom shirt

Play-Doh!

One Month

It's been one month....one month since Mark had to go in for surgery and everything changed.  I have so many mixed emotions about all of this.  I look back and say it's only been a month.  It feels like a year.  This is all the beginning of this journey.  We are so happy to be home, but also feeling a little stressed of whats ahead.  Mark will start back in school this week for 2 days.  Then maybe if all goes well he will go 2 full days the following week.   Chris and I on the other had have been struggling with our decision on the transplant.  We hope to come to a decision soon.  We are thinking a lot about what is best.  Once we move forward it will be the start of a great thing!  Mark is into his routine and doesn't seem to mind the trips to Boston.  He asked frequently when will I be going to "dee-all-a-sis".  He loves the nurses and his job feeding the fish!  He just seems like nothing is a bother.  Even when he is sick or has a rough day, he just goes with the flow.  I on the other hand feel like a zombie.  I am tired, I don't sleep well...always worried about Mark.  Chris is a trooper.  He has had to keep everything together and take care of the household.  We went from a "normal" two parent working home, down to one in a flash.  It has been a lifestyle change in a sense...we are much more frugal.  In the end I wouldn't change that.  There has always been a bond for the three of us like any other family.  Now it's better we don't want to miss any moments apart.  That will never change.  So it is fitting that we make the one month mark on Mark's favorite day...Sunday Funday!    

I'm Not A Hoarder :)

Today we were busy busy!  We got up this morning had breakfast and headed out.  We had planned a family trip to Costco & Market Basket.  I know it's Saturday...we are crazy!  We actually did really well and were in and out of both stores.  Mark was rewarded with a ride on the merry go round at MB.  He loves those rides (even though he looks like a giant on them).  I need to bring a camera with me next time.  I need a pocket size digital...mine is too big to drag around.  When we got home we put everything away and then played.  I was being a procrastinator....I did not want to start cleaning the basement.  So finally after a yummy dinner that Chris cooked, we got Mark into bed.  I avoided my task at hand for awhile and finally headed down stairs :(  I needed to get all of our wedding stuff together that we offered to give to a friend of Chris'.  We had lots of candle holders and stuff that I want to get rid of and she said she would take them!   I managed to pack up all of that stuff and start organizing the dungeon!  Mark has a million toys I need to also pass along...anyone looking for toys let me know.  He has a ton of nice stuff just too much.  After putting in a little time down stairs my reward to myself...a nice glass of wine and an episode of Hoarders.  I just wanted to feel better about myself and my basement.   I still have a lot to do down there...but looks much better.  I have decided I'm not a hoarder...just lack organization skills.  This is one of my New Year resolutions I'm working on.

I also have to mention Chris and I had a nice time on our date night last night.  Thanks to Camille I had my brows waxed and a blow dry before we went out.  I am not going to lie...I didn't get a full face of make up on...but I still felt good!

Now it is time for a movie and rest up for Sunday Funday!!!!

More Snow & More Thanks!

Once again Mark and I got up to more snow!  Of course it only snows on the days we have to go to Boston.  So we got up and were ready to face all that snow.  We decided to take medicine, get dressed and head out.  First stop...Dunkins!  Heather and Matt gave us a gift card (btw.. thank you) so we had breakfast out.  Mark had two wake wraps and I had an ice coffee.  Mark was super happy about our stop at D&D's.  Then we were off to Beantown.  The ride was not bad today...I gave us plenty of extra time to get here.  We arrived about an hour early.  So we all know what that means....Mark wanted to eat again.  He had a little lunch and then we headed up to dialysis.  This gave me a chance to sit down finish my coffee and chat with one of the other parents.  His son is 18 years old.  He had his first transplant at 9 months old.  So he had got about 17 years out of his kidney donated by his dad.  This is such a great thing to hear!  The father had told me that being the donor was nothing.  He said he felt fine and was home within a couple days of surgery.  Now that they are about 17 years down the road they are going in for another kidney.  His son will first need to have the old kidney removed.  This will happen next week.  Then they will find out who will be his match.  His mother and siblings will be checked.  He will then need time to recover from his surgery of the removed kidney.  Dad says they are looking at about a 5 or 6 month process before the new kidney is in.  This boy went on dialysis only a couple days after Mark.  

I have to say when I sit in this room I always wonder.  Who are all these people?  Where are they from?  What is their story?  Well I'm glad I asked today.  This is making me feel at piece with our upcoming decision.  I spend more time with these other families, nurses and doctors, then I do with some of my own family.   

I also have some more thanks to give out today....My co-workers and some of the clients from  InStyle Hair Designs were very kind to us.   Camille my boss ( Chris' aunt) came by last night with a gift.  It was of course very generous and helpful to us at this time!  Thank you!

Mark also received a couple gifts in the mail this week from my Uncle Matt & Deb...and Marlene!  Thank you!  I can't say it enough how generous and helpful so may people have been. We appreciate this all so much!

Tonight is going to be date night for Chris & I.....man I am pumped.  We are going to Gibbet Hill thanks to a gift certificate we had from our wedding.  This is a big deal...I have to brush my hair and even maybe put a little make-up on.  I'm feeling pressured :)

Mark on the other hand has done well with his treatment so far today.  He did get a little sick within the first 30 minutes.  His cath has been clogging frequently.  They nurse decided that they will send him home with medication in the catheter this weekend.  This should help they clotting and clogging.  We will know on Monday.  They did mention yesterday on the phone that his catheter was on the poor side.  They hope to not have to replace it before transplant.  We have about 1 hour and 20 minutes left...hope it all goes smooth!

What I got up to this morning:(

Mark's new penguin mugs

All this candy made us happy

I think this is awesome!

Back To School

Today was Mark's first day back to school!  He was so excited...at one point early this morning (5am to be exact) he asked if it was time to go.  I convinced him to go back to bed.  Although it was hard to convince him, he had lots of question...that early in the morning.  He wanted to know if Ita was up getting ready for school, If the kids were getting on their buses?  He settled after awhile went back to bed for a little bit.  Once we were up a couple hours later, we had breakfast and got ready for school.  I am not sure what he was thinking about me going with him for the day.  He kept asking if I was going to go to work.  
Once we arrived at school we slipped into the classroom without notice.  I didn't want Mark to feel overwhelmed.  He was kept in the classroom for most of the day.  I think he was so happy to see everyone...and I think his friends were happy to see him.  We were there for the half day today.  He will go back next week Tuesday and Thursday for half days to ease into things again.
When he goes back to school full time he will be there just two days a week.  Dialysis has been tiring on him.  I don't want to run him down.
Today I had the chance to listen in on the monthly rounds on the phone with the Children's Renal Team. They give you the option to participate in this round in person, over the phone or you do not have to be involved at all. They said his treatment has been going well over the last month.  They also had mentioned that some of his medication are a bit off.  They seem to not be that concerned, but will watch closely.  The other mention was they will be intensifying his dialysis treatment.  Although he gets sick the first 30 minutes they will keep the rate lower at first...then increase after that.  This is with the hopes that he does not get sick.  It was nice to be involved in this call today.  I do see the team most days in clinic but we only talk bits and pieces.  Today was a chance to hear everything at once.  Today was a good day!

Restless Night

Last night I didn't sleep at all.  I had so much on my mind.  I tried to read all of the paper work in the packet they sent home with us.  I was hoping this would put me at ease with what we should do.  Not so much...I tossed and turned all night long.  I feel more stressed now then I did a couple days ago.  All morning I have been on the verge of tears and just feeling very anxiety ridden.  This is not surprising to me! 
 It was a long morning today.  Mark and I were both in slow motion.  I practically had to drag Mark out of this house today.  He feel asleep on the way into Boston.  He has been up a lot at night recently...I think he is feeling a little burnt out.  We arrived at CHB a few minutes late.  There was traffic near the hospital.  It took 30 minutes from Fenway to the hospital.   When we arrived we hurried in to get going for our treatment.  Mark was hooked up in no time.  He did become a bit nausea in the begining.  He actually got very sick.  Since that has passed he has been just laying in bed watching TV.  We have about an hour to go! 



Lots of reading material.

I think we both can't wait to get home tonight.  Mark keeps asking how much time is left on the dialysis timer.  We did get a visit from his neurologist today while we were here in clinic.  We have been having a lot of lab draws done over the last couple days to keep in eye on his medication level.  He has decided to raise his dose of the medication that is eventually going to be weined off.  He wants that level to stay up while we get him back on to his old medication.  This is the medication that he was taken off while he was in ICU.  The neurologist said it is going to take awhile to get that level up.  There is also the factor of the transplant in all of this.  The main focus is to keep his levels at a good place, and be able to clear him for transplant surgery.  There is a possiblity that all of his seizure medications and/or levels will need to be changed after the transplant.  This is all just a small piece of this crazy puzzle!

Family Meeting

Mark and I were up early to head into Boston this morning.  We headed out to go to an appointment with his primary care doctor.  We were then going to meet the family in Boston for the family meeting.  It took us a full 30 minutes to go to the end of our road.  We decided to turn back and skip the appointment with the primary doctor.  We then headed out a little while later with Chris to get to Boston for the meeting.  It was slow going...but we made it!  

The meeting was full of lots of information.  We left with a huge packet of papers and our heads spinning.  We have a little time to tell them when we want to move forward with the transplant.  We need to make the choice if we want to go with a live donor or not.  We need to way out the pros and cons of both donor options.  This seems like it will be the hardest decision to make.  I know we will make the right one...it will just take time.  The next hard part about all of this will be the intense recovery process.  It is all so much to explain.  I will blog about each step in this process as we go through it.

I have to say mark was so excited to be a part of the meeting today.  He felt like such a big guy with his meeting papers.  He sat quietly listening for a little bit....but soon turned to some play-doh fun with Johanna.  She is the Child Life Specialist in the dialysis clinic.  We are happy and relieved at the same time to have had this meeting today.  We know have all the information we need to move forward with this process.

We made it!!

Always Different

Every time we come to dialysis it is a different experience.  Some days are better then other.  I just never know what to expect.  Today Mark has had a tough start..blood pressure drop, nausea.  He seemed to bounce back after about an hour or so.  This makes it hard on us...with it being unpredictable and his medication levels not being so stable,  I always feel on edge.  If he rolls his eyes my stomach flips because I think he going to start seizing.  I just thought it would get easier quicker!  I have had countless offers from people wanting to take him in for treatment.  I truly appreciate it...but no way.  I need to be with him all the time.  I think as long as he is on dialysis I will be the only one with him.  Then I think to myself am I selfish, too worried or what?  Why not take the help..the offers.  No just scared and this is what works for me.  I would never forgive myself if he had a hard time and I wasn't with him.  Maybe some think this not the best for my well being to always be with him, but I don't.  I know when I need a break, and I take them when I can.  I hope after tomorrows family meeting we will be more informed and excited to move forward.  I would of course do this for the rest of Mark's life if I had to. I am not going to lie by saying we are almost a month out from the day this all started...December 22nd.  It feels like it has been a life time.  I do believe that god gives you what you can handle.  I use to wonder why he trusts me so much...now I thank him for allowing me to be Mark's mom.

What Happend

What happened?  I think I need to make an agreement with myself....If I do not blog on Sunday it is not a big deal.  If I do it's okay too!  Once again I felt weird taking a day off..but we were busy..Doing what you say?  Nothing.  We had some visitors through out the day.  Chris headed off to Sunday Funday with the guys...I made the decision to stay home with Mark.  It was not that I had to, but is just for the fact that it was a big game.  I knew that the guys would be a little upset...god help us if we lost.   Sadly we all know what happened. 

Chris let me sleep in on Sunday...It was awesome.  Once I got up it was time to start my day with some of the best little company we could have!  Elisa and Faith came for a visit.  They brought their Mom's too...I love them too!  It was nice to hangout have coffee and see the girls.  Evy and Bobby were here as well...but as soon as Chris set up the new printer the boys were out of here.  Mark was in his glory with the company.  After they headed out Ita and Rachael came by for a visit.  Rachael is a very special girl.  She has always had such a big heart.  She volunteers time in Mark's classroom throughout the school year.  She is in middle school...she also has hung out with Mark outside of school.  I love that she is so patient and understanding of Mark.  It takes a lot of courage at her age to be there for my little guy and the other kids in Mark class.  Mark was of course happy to see her and Ita.  Once they headed out it was time to watch the game and hang out with the girls.  It was a quiet afternoon for the most part...Just Eve, Amanda, Abby, Mark and I.  It was nice to sit in front of my TV and actually see the game.  I wonder was it tradition that made the Pats loose? This was the first Sunday (besides when Mark was in CHB) that the whole crew wasn't together under the same roof...Did someone wash a jersey??  Who knows?  Let's just hope for a better season next year.  Well one more question....Will Tom cut his hair??  
We are now getting ready for a busy day in Boston.  Mark has his Check up with the team during rounds...They do this once a month.  Also tomorrow is our family meeting.  This is when all of our questions will be answered, and we will start to make a plan of action.  This is going to be a busy week for us.  We will be in Childrens 4 days as of today...maybe 5.  

Relaxing Day

Special delivery was a perfect post name for yesterday!  When we arrived home from a LONG car ride last night, Mark walked into the house to 3 gift bags.  Once again another gift from the Millipore staff.  There was a bunch of cards, a new portable dvd player, caring case, headphones,  about 15 dvd's (all that Mark likes and doesn't own) and a gas gift card!  This is just incredible.  Someone got word of Mark's love for his movies.  Thank you Millipore employees....So many of you have gone above and beyond.  
After the excitement we enjoyed dinner with friends and played until Mark had to go to bed.  He was tired, he stayed up later then normal due to the long commute.  After Mark went to bed the adults watched a movie and went to bed as well!
Today will be a relaxing  day.   We have a trip to the grocery store planned for later.  Chris had to go away for the night so it will be quiet around here.  
Quiet can be your best and worse friend in the world.  When you need to unwind and just get away it is so nice.  When you have lots on your mind it can make you crazy.  I guess this is something I need to work on.  I always have lots on my mind.  Today I can't stop thinking about two people I care about.  My friend Melissa and her family are laying her grandmother to rest.  Also big thoughts to Becky and her family.  Becky loss her father yesterday.  Life can be unfair and so hard to understand.  I just want them to have the strength to get through this hard time.  Much love to you both and your families. 
For now we will see how this day goes...maybe lots of cleaning?  

He own's pajamas with a cape!

Special Delivery

Mark and I had a late start today!  We slept in a bit...boy it was nice.  We woke up about 8:30 all snuggled up...Mark, Myself, and the dog.  No one wanted to move this morning.  We did have a late night last night.  We had to go pick up the car, so we decided to stop at Friendly's on the way home.  Mark was so excited, he loves going out to eat...Thanks to a couple gift cards Mark was a happy camper!  Once we got moving this morning we were lucky enough to have Amanda stop by. She brought coffee, breakfast sandwich for Mark and most of all great company!  Mark also had PT before we had to head into Boston.  We had a busy morning and before we knew it we were in Boston.  Mark has had good treatment so far today!  We have been busy...Mark played on his ipad, and worked on some cool projects.  I had to fill out more paper work with Renal Social Worker.  Tonight we are going to go home and try to have dinner with Evy and Bobby.  Last time we did this Mark had a seizure.   This day has been uneventful so we hope it will stay that day.

Today we also received a special delivery of gift cards from the Tyler Foundation.

The Tyler Foundation's mission is to provide financial support to families' of children with epilepsy that are being treated at Boston Children's Hospital and UMASS Medical Center.

Due to Mark's seizure condition we have been able to receive help from this foundation.  The Tyler Foundation is local to us.  They are based out of Groton, MA.  We have received help from The Tyler Foundation in the past.  The founders are Heather & Erik Plotkin.  I encourage you to please check out their website and read their story.  I have not been in contact with them recently, but Thank Heather & Erik again for supporting us during this challenging time for us again.


Mark was happy to deliver more cookies to his Nurses today from The Operation Baking Kids baking club.  They're loving the special Friday deliveries.

Secret Obsession

Mark and I were up early this morning and out the door with Chris.  We were on our way to the lab to have blood work done.  He needed to have his labs done before he had his morning medication.  This is so they can have a true read on the actual level of the seizure medication that has been out of sorts!  When we were at the lab this morning Mark's Great Aunt "Snoozie" (that is what he has called her since he was a baby) was working.  She gave Mark his own personal tour of the lab.  He was so excited to see how all the blood was tested, stored, ect.  He would not stop talking about his tour all morning.  I wish I had my camera...he was glowing.  The lab is his other secret obsession (this maybe tied with Santa).  He will ask every time he has blood drawn at Childrens....Where are you sending my blood too?  What floor is the lab on?  How long will it take?  He ask these questions every time we are there... That is a minimum of 6 blood drawings a week.  He is truly obsessed with the lab.  He has been unable to get a tour at Childrens....I guess it pays to know people.  

Not only did Mark have the excitement of his lab tour this morning...He also had another HUGE surprise when he woke up....an ipad!  He came down the stairs this morning and saw the box...all he said is "Where did that come from? & Who's is that?"  I was happy to inform him he was a proud owner of an ipad...thanks to all of the following people : Jaime, Matt, Sam,Tyler,Lisa,John,Danny,Dawn,Mike,Mikey,Dan,Joan,Vicki,Carl,Elsie,Pete,June,Steve,Jeff,Alex & Nikki!  He was all over that ipad!  He had asked Chris and I for one at Christmas.  I had to sadly inform him that Santa does not bring gifts of any sorts from apple!  He was okay with it..I guess.  After all of the early morning excitement Mark had is buddy Tyler over to play.  They played for hours as normal....they are great little best buds!  They were both disappointed when it was time for the fun to end.  Mark had school this afternoon.  Mark again was so busy with Kathie from school today.  She showed as all of Mark's favorite ipad apps, he learned more about penguins and was hard at work for quiet some time.  Now he is waiting on a late after snack, and playing with his play-doh and stickers.  Feels like are days are always filled and never a dull moment.

Mark's new love.

Sticker fun!

BTW....Mark's favorite and only app at the moment is Angry Birds!