Thursday, May 5, 2005 9:03 AM CDT

Raising any child is an adventure,raising McKayla has been an extreme adventure that I would not trade for anything in this world!

McKayla is CRANKY oh boy,I don't think I have ever seen her this cranky in her whole life.Lastnight I thought her and I would run to Walmart just to get her out for a bit,I needed to buy a new nozzle for our hose.Well we walk in and the nice Walmart greeter says "oh do you want a sticker"!McKayla looks up and her and rather loudly says "NOOOO"!Needeless to say the lady did not know what to do thats how cranky McKayla is.Anyway we go through Walmart and we finish up for the rest of shopping trip, McKayla was very good.So we get to the praking lot and I have a pretty full cart and all of a sudden McKayla bolts on me,so I try to leave my cart but as I try to leave it, it starts rolling so I start running with the cart and McKayla is laughing and running I was so scared she was going to get run over all these people are laughing at me.So I finally catch the little stinker and I put her in the cart and walk all the way back to our truck,and as I was putting McKayla in the truck I noticed this lady I was parked by was laughing so hard!

McKayla probably ran a good half mile before I caught her so you can imagine how crazy I looked.So anyway On the way home I am talking to her telling her how dangerous that was and she just looked at me with this evil look like I had spoiled all the fun!

So we got home and I put the stuff away get McKayla settled down I thought well maybe she will sleep now that she had a good run.So I thought I will go water the grass for a bit while she is watching her shows.So I do that I go to go back in the house and the door is locked.I look in the window and there is my little princess staring at me with her arms folded and tears are running down her face.So I get the window open and I start trying to convince her to unlock the door and she says "no".She was mad at me for giving her heck on the way home from the store I could tell that by this point.When you give McKayla heck you can never raise your voice to her becaue it is not effective,and I didn't but all the same she was mad!

So with the patience only a Mother could have for her child,I had to convince her to let me in it took me a good 15 minutes.This is the first time she has pulled this one so I am gonna have to hide a key outside because after about the first 10 minutes of trying to convince her she started laughing and thought it was pretty funny that she was in control.

So that was our evening she settled for a long time after that and her and Cory and I just hung out. She is till acting out so I know for a fact she is still not feeling good,she cried for a long time lastnight and that is just not McKayla I had a hard time comforting her I just wanted to hold her and rock her and finally after about 30 minutes of crying she let me,poor little princess.She is extremely over tired.

Anyway those were our adventures of yesterday,I am sure people went home to there families and said"you should have seen this crazy lady running through the parking lot with her shopping cart"!It is a good thing I learned along time ago not to care what other people think,and I know I at least made 10 people smile yesterday that I wouldn't have otherwise.

Anway I hope everyone has an awesome day!

Tuesday, May 3, 2005 6:27 PM CDT

So McKayla did end up getting sick nothing to serious,we were on our way to school on Monday and she started throwing up in the truck she was white as a sheet,then she got the runs poor little thing.She has had no sleep at all in the last couple of days.

It is funny because she will always start to really act up when she gets sick,it never fails she just does not know what to do with herself.

So this morning I took her into the hospital to have her blood work done and everything came back perfect it is great, even though she has a stomach bug her liver enzymes are not elevated at all.There is nothing in her blood work to indicate anything is wrong,I always get a little edgy when she comes down with something it is always in the back of your mind that something could go wrong.

When she had the Citrullinemia the flu was like your worst nightmare,it was one of the hardest things to deal with and also very difficult to recover from.Thank God that is over with forever!!!!!

Anyway we are really tired I hope that she will sleep tonight because I don't think she even got two hours last night and today she did not rest at all.When anything happens her sleep is affected.So I will keep a close watch on her for the next couple of days and hopefully this will clear up quick.

I hope everyone has a great week!
Happy Birthday Kevin!
Jodi

Sunday, May 1, 2005 3:44 PM CDT

So Kevin is gone out of town for the week it is his birthday on Tuesday so we will miss celebrating that with him but we can do it when he gets back.
McKayla is bruising really easy right now so I will be interested to see what her blood work looks like this week.

McKayla really has not been herself lately she is very cranky so it is a good possibility that she is coming down with something,plus she has been very clingy,which I don't mind then I get lots of cuddles from her.

On Friday I went to walmart to pick up some treats because the weather is so crappy and I thought it would cheer her up for a while anyway,I left for work at 12am and she was still up Kevin said she never went to bed until 4:30am and she never woke up until 2:30pm on Saturday.Lastnight she was up very late to I am glad I have the next day off so I can try and get her down really early.

Sometimes it is difficult to tell what is wrong with her she will walk around and say ouch but she won't tell me what hurts,she was very itchy lastnight as well.I was asking her why she thought she was so itchy and she said "mosquito".

Yesterday Kevin needed us to drop him off some lunch at work and it took me about an hour to get her to leave the house what a little stinker I wonder what goes on in her head!

Her looks are really starting to change she looks more grown up it is crazy.

Well we will see what the week brings it is suppposed to warm up so that will be great to get McKayla outdoors again.
I hope everyone has an awesome week! Jodi

Friday, April 29, 2005 0:27 AM CDT

Well I have not updated all week,McKayla has kind of had a rough week she has been very cranky and needy.On Wednesday I could not get her to go to school I woke her up and she was like a bear she stayed in her room most of the day watching movies and coloring, her sleep I think has been pretty poor.

Her seperation anxiety seems to be getting worse, at school when we get there she cries for a good hour.Today I had to drag her in there kicking and screaming and it is physically and emotionally draining she is a very strong girl and when she does not want to do something watch out.I have a very sore back tonight because of this I guess I will have to do some serious strength training on my back if this continues,although after the hour of crying she settles in nicely.So I guess that is her way of communicating.

Tonight we went through our basement and got a whole bunch of stuff ready for the salvation army and I told Cory and McKayla I would take them to Tim Hortons for helping me well it took a good hour to comvince McKayla to leave the house well I wish I wouldn't have as I was backing out I smashed into my neighbors car.That is the first time I have done something like that but I did not see it at all we have a Ford explorer so it is a lot higher.So her door is pretty crunched but the light only broke off my truck.The same thing happened to me about three weeks ago a lady at work smashed into the back of my car and Kevin fixed it himself and it only cost her $25 she was so happy about that she gave us $50 that was so nice of her.

So this next week we have to go and get McKayla's blood work done.Please pray again for Savannah as she is not doing very good and pray for there family as they have been through way to much already.Also they are three children on caringbridge in the past week who have died please pray for these parents whose hearts have been broken forever.And all our other friends who are fighting so hard for life.

I hope everyone has an awesome day and don't forget to sign and let us know you have been here.
Jodi

Monday, April 25, 2005 11:03 AM CDT

Well we had a great weekend McKayla would not leave the radio she was not really acting like herself the last couple of days.I can say that I just get so inspired by people that I meet through the radio thon every year It is funny because everything we have been through with McKayla seems surreal sometimes.They raised 1.3 million dollars and I am so proud to say we were a part of that.

We will shoot for the stars with McKayla whatever it takes to get her where she needs to be but at the same time letting her enjoy each and everyday of her life, she has fought so hard to be here.

I had someone from 630 ched ask me a whole bunch of questions off air and it made me think for a second she was saying well don't you worry she will need another transplant and what about the side affects of the drugs I know they up your chance of cancer quite a bit.You know what though although I am aware of thr risks I actually have not thought about them for so long and there is a reason for that,the risks before were so much greater and we had a long time ago chose not to live our lives like that.We live it everyday and then if something comes up we deal with it.

On Friday we had such a nice night we went to my Dad's house and had a fire and McKayla has always just loved the moon.So I asked her what the moon was made of and she said"cookie dough" I was laughing so hard what a great imganiation and then she told me she was gonna eat it.So I asked her how she would get there and she said she would fly and I said how and she said on a carpet.It was just so cute she fell alseep on my knee at 10:30.

On Saturday McKayla and I went to Safeway and got some snacks it was pretty late and she was so good.So the next morning she woke up Kevin and she said "Daddy,Bacon,eggs,Fway".Kevin is like what and she kept saying fway,fway.Well that is how she says Safeway it was so cute.You would think it would be a lot easier so say Safeway than fway.
Anyway we are really enjoying this nice weather I hope everyone has an awesome day.Jodi

Thursday, April 21, 2005 4:28 PM CDT

Radio-thon is an amazing experiance!

Please tune in and donate!

You never know when you will need it!


McKayla had to stay home from school today her and I are exhausted but I will not complain I am just so happy that things have turned out the way they have for us and I will thank God again for one more day of health.

Her and I are just laying on my bed listening to the radio and we are relaxing she is so awesome,I was really proud of Cory today too he handles hiself so well.He was standing beside me at the hospital today and I was looking up at him oh my Goodness where does the time go he is so tall.He will be 13 on May 11,anyway I have to get back to the princess.I will update more later.

Have a rainbow day! Jodi

Wednesday, April 20, 2005 9:22 AM CDT

So tomorrow we are going to be on Joe fm 92.5 at 8:00am,and on 630 ched at 8:35am they changed it on us.The Radiothon started today and I was sitting here and thinking about McKayla and the song they made of us last year came on Cisn it was pretty cool.

McKayla had a bad day yesterday at school she was really upset.
It is funny because a lot of the time I will sit and ponder how did we get here.I had Cory I know what it was like to have a child who was healthy I took that for granted.
Then I had McKayla and she was sick and I rememeber making my deal with God give her to me however you can and I will love her with all my heart.I do love her and Cory so much I could never imagine any greater love in the world.

McKayla was given back to me many times when it could have so easily went the other way,we were given a miracle and her name is McKayla!

Health wise McKayla is doing awesome but because of all the poor health,she now has so many other challenges.
Educational challenges sometimes are harder than the health challenges,sometimes I look at McKayla and I feel so sad, she has so much she wants to tell us but she cannot get it out quite yet so she gets frusterated and she cries I always think of her as someone who has had a stroke and their speech is affected.

I always appreciate so much that she has come this far don't get me wrong but I just wish things were easier for her.
McKayla has to work so hard to do things that come so easy for other people and sometimes I just wonder why she was chosen for all these challenges.

I know in my heart we will look back one day on all of this and say wow! McKayla just needs more time,I still strongly believe that the day McKayla had her liver transplant was the day her life started.

I hope everyone has an awesome day! Jodi

Monday, April 18, 2005 11:53 AM CDT

I received this e-mail from Jamie and I thought I would share it since it is organ donor awareness week.


> IF YOU COULD SAVE SOMEONE'S LIFE...MAYBE SOMEONE YOU
> DON'T EVEN KNOW...WOULD YOU DO IT?
>
> Seven years ago, our youngest son did just that.  In
> fact, he saved three lives.
>
> Did he run into a burning building?  Did he pull
> them from a terrible automobile accident?  He didn't
> do either of those things.  He simply told his Mom
> and me that if anything ever happened to him; he
> wanted to be an organ donor.
>
> Because of Adam's Gift of Life, Ken and his new
> heart are doing very well in Mississppi.  Donna's
> son, Cody, doesn't have to call 911 because his Mom
> has collapsed in a diabetic coma.  One of Adam's
> kidneys went to a lady in Illinois...one kidney went
> to a little boy in Louisana.  Adam's liver recipent
> died after three years because of an illness not
> related to his transplant.  I had the chance to talk
> to one of his sons and he expressed his thanks for
> the years they were able to spend with their Dad.
>
> In all, 52 people benefited from Adam's gift.
> Tissue donations are used to help people who are
> horribly burned.  Veins are used in open heart
> surgery.  Bone and connective tissue are used to
> treat a whole variety of injuries.
>
> There are 88,000 people on the list waiting for an
> organ.  Today, 17 of them will die because there are
> not enough donors.



O.K I lost McKayla's journal 2 times I am now writing it in word so that I don't have to write this for a 4th time today.

McKayla and I cleaned all weekend it was fun she just love's to help, Kevin was out of town so we got busy.She organized her room by herself and she did great,she is so proud of her room.

We will be going on the radio-thon this Thursday we will be on 103.9 at 8:00am and we will be on 630 ched at 8:30 sometimes when we get there the time changes a bit.After that we are going to get McKayla's blood work done.

McKayla is still really scared of sirens on Saturday she could hear an ambulance through the window and she ran over to me and was hanging on for dear life she said "ambulance me" I told her no they wre going to help someone else.She must remember all her trips in the ambulance.

Her foot is healing I can tell it is still sore it is in such a bad spot but McKayla never complains.She scraped her elbow yesterday I guess it is just that time of year.

I was trying very hard yesterday to teach her to ride her bike well she figured she could just get on and go so she would not take her toys out of her hand because she wanted to ride to the park it was funny.Considering the fact that her balnace was so poor before the Transplant she could barely walk a step without falling she is doing awesome.She will be zipping around in know time.

Anyway I hope everyone has an awesome week.Jodi

Thursday, April 14, 2005 1:48 PM CDT

Well we have had a really good week for the most part,McKayla cut her foot on a piece of glass and we are watching really close for infection she did not even cry.
The weather is pretty crummy hear right now but it is supposed to get nice for the weekend.

Next Thursday we are doing our local radio-thon I think we are on at 8:00am on Cisn I will have to double check that though, it is always an emotional couple of days.
I have had to catch up on some sleep lastnight and this morning so I feel great today.

McKayla was not to pleased with being woke up at 9:30 am yesterday she is starting to go to school a little bit longer now,so that is good for her.

I am looking into to taking her to the Transplant games in Ontario in the summer time I think it would be awesome to get her involved in that as young as possible plus it would be great for her and I to go and do something on our own.We already know that she can run really fast so we could just go from there.

On Tuesday it would have been my Mom's Birthday and every year we go and get balloon's and send them up to heaven.McKayla really understood it so well this year my Mom's been gone for 4 1/2 years now and we still miss her so much everyday.There is something about doing this that makes us feel good.Cory my Dad and McKayla always say a little something and then send them up.

Anyway I hope everyone has an awesome day! Jodi

Saturday, April 9, 2005 4:12 PM CDT

Oh wow I have not really had to much of a chance to get on the computer lately with the weather being so nice McKayla wants to be outside.The only problem with that is getting her into the bath after.
She is such a nature lover she loves playing in the dirt and collecting sticks and bugs,she could lay on the ground all day and watch ants it is so cute.
She wakes in the morning and goes "morning Sunny" and she has a big smile on her face.
McKayla had a great week at school this week she says by to me now and tells me to pick her up it is really great knowing that she enjoys being there.
I need to get her to spend more time with kids her own age because really she is so much more social with adults than with children.Although she does great with Cory and she did really well with Tracey's kids.
I need to always remind myself how far McKayla has come in this last year and how wonderful she is doing there is know rush,I am so pleased with her progress and she continues to improve which is awesome.
I never in my wildest dreams could have imagined that all this would happen so fast,she really is a great little girl!
Anyway things are well I hope everyone has a safe and healthy happy weekend!
One more thing we just love playing jokes around here it happens on a daily basis well Kevin fell asleep and McKayla and I decorated his face we were laughing so hard Kevin is a really deep sleeper check out his picture in the photo album.
Jodi

Tuesday, April 5, 2005 11:36 PM CDT

Well Cory is finally better tonight,McKayla's did not really turn into anything to bad,she is kind of cranky though.
Right now she is just relaxing in her bedroom.
We went to a Make-a-wish event tonight and it was really great McKayla was very excited to be there.Although when I had to get up and talk about her wish she was kind of dancing all around the stage and being a ham it was pretty funny,thats what it is all about though.
Make-a-wish is just so amazing I really hope one day I am in a position to really help out.
It was great being there and listening to the other wish kid stories.
It is strange because a lot of people cry but I find some days I get angry when I hear of another sick child,I guess because there is so many and it just isn't right.

Anyway I was holding back the tears for sure,there were clowns there and McKayla just loved them.
It was a really good experiance.
McKayla got a special package in the mail yesterday from our transplant buddy Tony,it was so sweet I just want to thank him from the bottom of my heart.
Tony you put a huge smile on a little girls face and that was just so awesome of you.
Thank you God for another day of health for my little princess.
I am so happy that Cory is feeling better it is not like him to be down for three days he usually bounces back pretty fast.
The world really has some wonderful people in it and I am so glad to know so many of them!
Please pray for little Molly's family who I only know through caring bridge they just got back from her make-a-wish trip to disney world and her Daddy was killed in a horrible accident.
Please pray for all the kids who are fighting so hard for life right now,I went to two sites yesterday and these parents just lost there precious babies.Please pray for the heartache they have to endure.
I hope everyone has a safe and healthy day.Jodi

Monday, April 4, 2005 2:46 PM CDT

Well Cory and McKayla are sick today with two different things,Cory has the flu and he has been throwing up since yesterday afternoon.When McKayla got up she was sneezing like crazy and had a running nose.They are both laid out on the couch right now so at least they are resting.
We had a really good weekend on Friday we just stayed home.
On Saturday we went and met up with Tracey and her family and we had a great time McKayla had a blast,McKayla went swimming with Tracey's boy's they were so good with McKayla.She did not want to go on the waterslide and then she finally went I was watching her come down and the look on her face was priceless fear and excitment it was awesome.
Anyway it was wonderful to meet them!
On Saturday night we had my little brother's graduation party it was a surprise and he was surprised I am so proud of him I know my Mom would have just been beaming!
McKayla was having so much fun there she was serving everyone their food and taking care of everything she was so cute.
Anyway I hope these two kiddies get better soon!
I hope everyone has an awesome day! Jodi

Thursday, March 31, 2005 11:51 PM CST

McKayla is just doing so awesome it is great lastnight when I was leaving for work(yes she was still up the little stinker)She said "I Love you".It was awesome because it came out plain as day her speech has picked up so much again in the last couple of days.It is getting clearer and better all the time.This is really McKayla's last thing to over come, her speech delay.Now McKayla is 8 and for 6 years we have watched her progress but it has been slow but the great thing about it is I get to enjoy this process more than anything.With Cory he talked really early and it is great but once they have a full vocab you always take for granted just how awesome it is to be able to speak.With McKayla we have been celebrating almost everyday since the transplant.Her progress has been so fast,the sound of I love you and thank you and Mommy,I would not trade this for all the money in the world.I just feel so blessed to be given a second chance with her.
McKayla and I were at Superstore yesterday and honestly we didn't get one strange stare I was shocked I am sure this is the first time that has happened.Know one would usually stare until McKayla tried to speak then it was all eyes on us.There are still people out there who do that it makes me mad.Anyone sticking with the positive we are looking forward to some nice weather Mckayla just loves to be outside.Tomorrow we are going to meet Tracey and her three boys who we have met through McKayla's web site,I am looking forward to that.Anyway life is good I am so happy to be Cory and McKayla's Mom.I am so proud of those two,and I am so happy to have so much support,a great family and friends online and off.

Please continue to keep Anthony and Sam in your prayers,and all the other little troopers out there who are sick!
Jodi

Monday, March 28, 2005 8:24 PM CST

Well we had a awesome weekend McKayla just had a ball,the Easter bunny came and she had a great birthday party!
It is so much fun just watching her enjoy her life she is so happy.
We had to sing Happy birthday to her twice because the first time was so cute!After we sang the first time she raised her hands in the air and said "Yeah" it was like she just won a marathon and I thought really she has done better than that.I think I have a picture of it,I don't have a digital camera so I have to wait till tomorrow to get the pics back.
My Dad bought her a new bike for her birthday and I think my Dad was more excited than McKayla it was so cute she was so excited too.
Yesterday was such a beautiful day I cooked a turkey and we had our family here so it was great.
I don't know where the time goes I cannot believe the little princess is already 8 years old.
Anyway I am a little tired tonight and I have to go to work at midnight so I am gonna try and catch a nap.
Thank you everyone for all the awesome messages for McKayla we just love reading them the support we get is so amazing.

Please keep two special little guys in your prayers Sam who is having a hard time right now and of course our little buddy Anthony who is doing well so far after his bone marrow transplant.

I hope everyone had an awesome Easter we sure did,and I hope you have an awesome day! Jodi

Thursday, March 24, 2005 4:30 PM CST

So Tuesday was our hospital day I had to drag McKayla out of bed early she just loves to sleep in.Due to the huge snow storm we had it took us 60 minutes to get to the hospital when normally it takes us 20 minutes.We just listened to the radio though,McKayla was trying not to fall asleep.
McKayla was such an angel there she was sitting and waiting and she had her legs crossed like a little lady it was so awesome I just wanted to grab her and hug her.
She just loves it there because she gets treated like royalty mind you that happens here at home too!
So she decided she wanted to sit on my knee she has not done that for a very long time,so I let her sit on my knee and they start to get her ready for her blood work and all of a sudden she yells "Mommy" and I said "McKayla your on my knee" and she just burst out laughing because I think she forgot.
We had to go to the pharmacy and pick up meds and we got about 20 new syringes with the meds and instantly I felt so excited,it was stupid.Then I was thinking wow I really have learned to appreciate the little things in life!!!(syringes always seem hard to come by)
McKayla is really excited about her birthday on Sunday,it is just so great there really was a time when we did not think McKayla would make her 8th birthday,it is a hard thing to swallow when a doctor tells you that you will out live you child.
Now we get to celebrate those Birthday's and McKayla's new lease on life.It is really funny how kids pick up the bad stuff so perfectly when they are learning to speak,the other night she says "Daddy pick his nose"(Kevin will kill me for putting this on but honestly I will do anything for a laugh.)We always try to get her to say more than two words together and this came out plain as day it was funny.
Lastnight she said "Mommy stomach fat".Than she burst out laughing,so I told her the reason my stomach is fat is because I grew her in it.Well of course she did not believe me!
See for anyone who doen't know McKayla understands everything that is said to her and she knows what she wants to say but it just does not always come out properly she has really come along way and it just keeps getting better.Her brain is fine,she can actually argue very good for someone who has a speech delay!
This last week she has been really happy she had subs all week at school and she did just fine!
Slowly she is starting to wear a few more of her new clothes,which is awesome!
Please continue to pray for Anthony he is getting his bone marrow transplant soon!
I hope everyone has an awesome day! Jodi

Monday, March 21, 2005 5:17 PM CST

Well Cory got the money my Dad gave McKayla some later on Cory doen't know this though.McKayla sleeps way later than Cory, she is a sleepy girl!
Well tomorrow we have to go for blood work and we have to pick up meds,McKayla has been asking to go to the hospital a lot lately.
McKayla had a good week,she has been doing great at going to school to that is awesome.
On Saturday we took her downtown and we got Chinese subs they are very good but we had forgotten that McKayla had never tried them before.We used to go before the tx but we would always have to go somewhere else to get her food.
Don't ask me what is in them I am not sure but they are tasty,Cory loves them too.
McKayla looked so cute we just drove around for a while and showed her some things,it brings alot of new words out of her.
I really wish the snow would go away it was gone but it came back.
Cory has his last game tonight,they lost Friday and they also lost lastnight so I hope they can get one win in tonight anyway.I am sad to see hockey ending.Cory might try Rugby this spring I can give him some pointer's since I used to play,my Mom used to come and watch and almost have a heart attack.
I have been taking a lot of pictures of McKayla so I will have to put some up soon,she is still loving her new room.
This Sunday is McKayla's birthday she will be 8 so I have to get things together plus I will be cooking Easter dinner as usual so it will be a fun day for the little princess.
Please pray for our friend Anthony as he will be having a bone marrow transplant,he is so cute and a big hockey fan.
I hope everyone has an awesome day! Jodi

Thursday March 17, 2005

I want to wish everyone a Happy St.Patricks day this was one of my Mom's favorite holidays.
The race will be on tomorrow morning to see who can get to my Dad's house first, he still follow's the old tradition that the first person who comes into your house on St.Patricks day gets money.
So Cory would beat McKayla over there every year,then last year I snuck McKayla out of the house and she got there first,so we will see what happens.
McKayla has had a really great week,she put up a bit of a fuss on Monday for school but the rest of the week was great.
She is starting to get more used to change she had a sub today and she did very well we were so happy with her.She is taking direction better and over all just thriving.
I still Thank God everyday for the huge changes that have happened in our life we have had small bumps in the road in other areas of our life.
The thing is though we are different now we have all changed and when we have a bump in the road in our life it is really not that major we can appreciate that things could always be worse,and so we smile and move forward.
I am a strong believer in that everything happens for a reason good or bad and that changes the direction of your life and sometimes you cannot see the good right away but in the end it was for the best.
I love my family and my home and I still miss my Mom everyday,but I have so much to be thankful for right now.
I am so happy that when McKayla gets home from school she has mail from very special people in our mail box.There are wonderful people in our world there are many though that cannot feel joy because they are unappy with their own lives and those are the people I am going to pray for today.
I hope that they can feel joy before something tragic happens in their life and they learn the hard way of how to feel compassion for others.
I pray for all the special kids and their families who right now are fighting for life,when they should be at the rink or playing outside or just being goofy they are the hero's!

I hope everyone has a rainbow day! Jodi

Monday, March 14, 2005 10:14 AM CST

Well the weather has taken some what of a nose dive,it was so windy on Friday McKayla was scared to go outside.We played out there on Saturday for a long time it sure brings a lot of new words out of her.
On Saturday morning we went to my Dad's for breakfast and I had to leave there to go pick up Cory from hockey practice and she actually stayed with my Dad I could not believe it.
McKayla had a great week at school she is learning so many new things she only cried one day and that was it.The singing thing is so funny I just love that it is so cute.
She has started talking on the phone again too she has not done that since before her transplant.We are just enjoying her so much she always makes us smile.
Cory's team lost there game again yesterday,it was the first game of their playoffs McKayla did not want to go I was shocked.
Her face was really puffy yesterday though so I think I will have to get more fluids into her.
She is still sleeping right now,we stayed up pretty late on Friday watching movies,Cory wasn't feeling good so we thought we would all bunk down in the living room it was great.Anyway I hope everyone has an awesome day! Jodi

Tuesday, March 8, 2005 9:04 AM CST

So we had a good weekend the weather is just so beautiful I think that it puts a spring in everyone's step.
McKayla wanted to take her pool out on Saturday her favorite thing to do is swimming,she figured since most of the snow was gone it was summer,pretty funny!
McKayla and I went on a nature walk on Saturday she loves being outside and she loves everything about nature she loves to collect pine cones and branches,and she actually found a lady bug she loves them too.Behind our house there is a big feild and it is full of water so she went walking through there with her rubber boots on she was just in her glory,she sure loves those rubber boots.When we were kids we used to spend hours back there with our rubber boots on.I was looking at her with amazement just being so thankful for all thw wonderful changes in her we could never let out the back gate before because she would just start running and not look back it was like a jail break,so nice to be able to talk with her and teach her new things.Every morning she wakes up and says "morning" in this cheery little voice.I think she is just so happy with her room as well.She has been having some stomach upset in the afternoons lately,so yesterday I kept her home.One of the meds she is on cellcept it is a chemotheraphy drug upsets her stomach some days,and then she spends a good amount of time in the bathroom.Kevin and Cory and I were sitting in the kitchen lastnight just listening to McKayla giggle at Stuart Little she still just watches it over and over.There is a benefit to that she learns a whole bunch of new words.At least once a week I find us in the kitchen talking about all the changes and how much she has improved and how much our lives have improved.Cory seems to be having such a good year he is much more relaxed I think we all are.A really new thing has happened McKayla has started singing along to her Stuart Little C.D we had it on in our truck and all of a sudden she is singing the words in the back I think Kevin just about crashed we were so excited.McKayla went for so long not liking music and we are all music crazy around our house none of us have any talent where music is concerned but we sure do love to listen to it,it was awesome.I send prayers out to people who are at home and in the hospital who are sick and struggling everyday just to be healthy,all the little kids who are truly hero's who most days only know pain.I also pray for the families of the four R.C.M.P that were killed here they were all young men very sad.


I hope everyone has a Rainbow day!

Jodi

Thursday, March 3, 2005 10:04 PM CST

Well McKayla is a little stinker.On Tuesday McKayla went back to school, well she really put up a big fuss and I was pretty sure she was not going to go in the school.So I was sitting in our truck in front of the school using everything possible to get her to go in.Finally I had to do the grab her and run in as fast as I can trick,it makes me feel like a football player and a evil person all at the same time.So she fussed for a while when I was there and then she was fine.So I get back home and Kevin is off right now so he asked me what took so long and I explained to him all the effort and patience it took to actually get McKayla into the school.So I told him to come with me on Wednesday so he could see what she does.So yesterday we get her ready get into the truck pull up to the school she hop's out and goes in with a smile on her face.Kevin was looking at me like I was crazy,today he came and she was fine too.What a kid she just kill's me she is so funny!McKayla continues to be really happy lately she loves this sunny beautiful weather we are having.Cory had quite the hockey game on Monday night,it was a really rough game and Cory is a pretty physical player(but very clean just the same)So he body checked this other kid and the kid went down and put his leg up well Cory hit the boards with his face and the way his head flipped back I knew he was hurt I just about threw up.I have always like the physical aspect of hockey but I have never seen Cory hit the boards like that before.So Cory just skates to the bench cause he won't tell anyone if he is hurt,he was stiff for the next day but he is fine,thank God.I am so glad that he loves the game because I sure love to watch it.

Well I hope everyone has an awesome day!

Jodi

Wednesday, March 2, 2005 10:42 AM CST

Someone on tx buddies shared this story and I wanted to pass it along because it is such an important issue! Jodi




To all my friends and family,
It may only be once in your life that you are given the chance to save the life of another.

Many of you know that today Feb 28th is known to my family as Liver Day because 21 years a go my family received a miracle. In Feb of 1984 my father who was suffering from Hepatitis C was told he would, at the most, only have two months left to live. He was 57, a surgeon, had lived a life devoted to helping the poor and underserved but now he was not only helpless to save others but could not save himself. He had spent months at a hospital in Pittsburg waiting for a possible arrival of a donated liver that would be a match for him but it seemed it was not to happen. So on the morning of Feb 28th 1984 he decided to give up and come home. As my father was waiting in his wheelchair to finalize his release from the hospital the doctor ran to him to stop him. A liver that would be a match for him had been found. Somewhere across the country in a Midwestern state a young man was killed in an auto accident and his family had made the decision to donate his organs. There was not even time for my father to call home. Instead we received a call from the hospital telling us what had happened and that my father had immediately been taken into surgery. They told us he had only a 50% chance of surviving the actual transplant. The surgery took over 27 hours and my father survived. In fact, at the time he was the oldest liver transplant patient to survive. Within two months of post surgery care he was back home with us and he was told that he would most likely have a year and a half more to live.

Well, we received even more than that. We received nineteen and a half more years. I did not end up having to say that goodbye to my father until the morning of September 3rd, 2003. Having to say that goodbye was the hardest moment of my life. It was something I have dreaded since I was a girl when he first became ill but if that family had not made that courageous and selfless decision to donate their son’s organs I would have been saying that goodbye long ago.

Regrettably we were never in touch with the donor family. When my father had his transplant such opportunities of communication between donor and recipient families were not available. I wish I could have thanked them though. I wish I could share with them what my father accomplished in those nineteen and a half years. I want them to know that with that gift of time he saved others and he did it with even more of a passion because he truly recognized that he had been given a second chance at life.

So in honor of Liver Day and in honor of the family who lost their son that winter’s day and in honor of my father who got a second chance at life and certainly utilized it…I ask you to please spread the word of organ donation. Feel free to share this email and the links below with others. Say yes, mark the “yes” box on your donor card and license, discuss it with your family and know that at least once in your life you will have a chance to save a life.

With gratitude,
Julia, daughter of Dr Jeff Pennington- organ recipient


*Today, Feb 28th, 2005 87,583 people are waiting for organs to save their life
*Every 13 minutes a name is added to the national transplant list
*In 2004, over 6,000 patients died waiting for organs
*One organ donor can help save and/or improve the lives of up to 75 people.
*Every day an average of 70 people receive organ transplants and 16 people die while waiting

For more information:
http://www.organtransplants.org/
http://www.donatelife.net/
http://www.transweb.org/

Monday, February 28, 2005 1:57 PM CST

I hope everyone is enjoying this nice weather,Tyler is at home now so I will get his home address and add it.I already sent something to the hospital so I hope he still gets it.

McKayla has had a really good weekend her sleep is really getting on a more normal schedule she is not sleeping in until noon anymore,and she is going to bed earlier.

On Friday night she was up in her room playing with her three teddy bears it was so funny Kevin and I were just listening to her.There was a Mama a Daddy and the baby and she had this huge story going on about how the baby needed diapers and the baby was crying because it was thirsty.So the Mama had to go to the store it was so cute, and pretending is great she has really starting doing that a lot another huge step in the right direction.

Anyway she is really doing great we went to Papa's for Chinese on Saturday and then my brother came in and said he had a cold so we bolted out of there real quick.

I hope everyone has an awesome day!

Jodi

Friday, February 25, 2005 9:34 AM CST

Great idea Tracey!

If anyone wants to send some mail or a card to Tyler Aboutilaf:

University od Alberta Hospital
8440-112st
Edmonton ,Alberta
T6G 2B7
Room # 4D3-04

or you can e-mail wishes and they will get delivered to his room UAHWellWishes@cha.ab.ca
He loves hockey and playstation just like any other 12 year old.

So we have decided to keep McKayla home from school and anywhere else for that matter for the next couple of days until her tac level goes down,there is know point in starting to take chances now.

McKayla came off her iron supplement so that is good cause iron is pretty hard on the body. Dr.Jones is keeping her on anti-biotics until the end of April at least.Normally they take tx patients off 6 months post but he wants her to get through the cold and flu season.I feel comfortable with that it is working we know that.She is going to start on vitamin-D though.

McKayla just keeps getting better with her speech and understanding everyday.Lastnight she wanted a rice krispie square and she said "Krispe sqaure please",so I gave it to her and she said Thank you.I just loved that no prompting at all.Learning to speak so well and with manners you can't beat that feeling!

McKayla is so happy just when you think she cannot get any happier, the wonderful laughter that has been coming out of her the last couple of days just makes my heart soar.

I hope everyone has a rainbow day!

Jodi

Wednesday, February 23, 2005 9:50 PM CST

McKayla had to fast from 7:30 lastnight all she could say all night was "hungry,thirsty".

Today I got off work at 6:00am we had to be at the
hospital at 7:30am.We got there and the lab was packed so we put in McKayla's req and went upstairs to radiology and McKayla had her first test it was a bone age scan she was really good for that when she saw the light come down on her hand she thought it was sunshine.

Next we went and had an ultra sound of her liver and kidneys which was so cool becuse it is my liver in her.She was getting pretty uncomfortable and was getting so hungry.

Then off to the lab she was such a trooper in there all her buddies where there and she gets treated like royalty.She had a lot of bleeding after that needle which was very unusual it was spurting not a nice site anyway lucky I do not have a weak stomach Kevin on the other hand is a sissy.

Then we had to go back upstairs and she had a GFR which checks her kidneys,well she went nuts I would have to if I was her,and I thought Kevin was going to hit the floor or ceiling I am not sure which one yet.They had to inject a dye into her well 8 needles later and they finally got it in both her hands were blown up and the one was really hurting.I was at my point where I was going to grab her and run out and the little voice in my head said "No" she has to have this done,I think every Mother with a sick kid has had this play in her head a few times at least.
So that was done but the trick is you then have to have blood work one hour after the dye is injected and again at two hours.So the rest of the GFR was uneventful except McKayla is full of holes and bruises.

Then off to see Dr.Jones he said looking at McKayla's blood work right now he would never be able to tell she was sick at all except her tac(Immuno-suppressant) level is 50% higher than it should be,so I am a little nervous it being that high and McKayla having all these holes in her body because they are a great source of infection.So hopefully that will come down in the next couple days and she won't catch anything.

To think this kid was so sick over a year ago and now her blood is that normal.It is so funny when Dr.Jones examines her he always says lets check and see how Mommy's liver is doing,I really don't think of it that much.

So I hope all the tests come back great like we are expecting.

On a sad note we found out Tyler is back in the hospital and when we went and saw him.Kevin and I honestly did not recognize him he looked so sick,they are filming a little miracles thing on him right now.I cannot get his face out of my mind he has know life left in his eyes,I wish there was something we could do to get that spark back, it is gone.For anyone who does not know Tyler was transplanted one month before McKayla he had a Urea cycle disorder as well his Dad donated to him and he needed another life saving transplant 3 weeks later he spent months in the hospital the whole time Mckalya was in they were side by side.Tyler was one of the four kids around Edmonton who has a Urea cycle disorder then there is McKayla and two other kids from the same family, there has not been another kid born with one since McKayla so you can imagine how rare they are.

McKayla had a complete melt down when we left the hospital she wanted to stay we had to get out of there though rsv is running rampant there.I thought it was kind of sad she just feels so comfortable there.

Please pray for Tyler,Kevin and I just feel sick for them Tyler is the same age as Cory.

Also three families that I know about lost their beautiful children this week please pray for them as well.


On Tuesday McKayla did not want to go to school when she got there she put up a big fuss and did not take off her jacket and boots the WHOLE time she was there.Yup you guessed it she wanted to go home to her room!!!

I thank God for another day of health for McKayla and for the chance for her to live a whole year with good health.I pray and pray for the other families who are fighting so hard right now just to live,and for the parents whose hearts are forever broken.

I was also thinking so much today of my little nephew Austin who died at 3 days old,why? I have been asking myself this question a lot lately,I know Austin is with my Mom though she was such a great Grandma I know she needed one of the kids to be with her.

I really hope that everyone has an awesome day!
Jodi and Family

Monday, February 21, 2005 1:42 PM CST

WOW!WOW!WOW!WOW!



McKayla will never leave her room again actually I think I am going to move into McKayla's room with her,if she will let me. It is so amazing,I will have picture's to put up tonight.The people who made this happen for McKayla are so amazing and they worked so hard for her,I am at a loss for words for only the second time in my life.I guess I just have to say they are so special!

So waiting for McKayla's room to be done was like waiting for Christmas morning for 3 days we were so pumped all weekend.Yesterday we got to see it and McKayla was so excited,she did not know what to do with herself.She has a new big flat screen t.v,a dvd player,home theater system in her room.She got a PS 2 with a ton of games and c.d's and dvd's.McKayla now has beautiful bunk beds a desk she is just so happy.Lastnight Cory slept on the top bunk McKayla likes the bottom.Cory was so happy for McKayla too he is really trying to teach her the ps 2 games.

Stuart little 2 had been on the T.V the moment McKayla got to see her room so she just keeps watching that movie over and over again.It is just so wonderful that she has a little slice of heaven right here in our own home.McKayla loves being at home so how fitting that she have this beautiful room to spend her time in.

What they did in there I would never have thought of myself,they put up a murrel one wall is blue and two are green.Cory loves the blue so much he wants that color in his room.There are wall sticky's all over that just add the the whole theme.Now I have to get McKayla out of there for 20 minutes today to have a bath.


I thank God for the make-a-wish and the wonderful people who put there time into this great organization.Also for another day of health for McKayla Wednesday she has all her scans and blood work,ultra-sound of her liver,her kidney's are getting checked,bone density.She is getting worked up from top to bootom so I pray it all comes back good.Thanks for the e-mail Verna we did have a magical,amazing,wonderful weekend.I will hopefully have the pictures up tonight.Jodi

Thursday, February 17, 2005 3:00 PM CST

We are so excited for this weekend to come it is going to be so much fun.The picture on the home page is a little game McKayla loves called wash the dishes,she wants to do it till our arms fall off.Some people may remember it from when they were younger.
I just got new pictures back almost everyone of them McKayla has a huge smile on her face she is such a happy girl.
Even before the transplant she was happy and I would look at her and think how can you smile kid you have so much pain all the time and you have been through so much.
McKayla has taught us so much,what an angel.
I have to remember to take before pictures of McKayla's room,and then of course the after ones!!
Cory has a tournament this weekend so we will be busy,busy.
McKayla will only go to Cory's hockey games, she will not go to his basket ball games go figure,she is so funny.Next Wednesday we will be at the hospital all day for tests,so I hope all goes well!I hope everyone has an awesome weekend!!! Jodi

Monday, February 14, 2005 6:30 PM CST

Happy Valentines day!

McKayla had lots of fun today she was so excited when she got home from school she had a big grin on her face and she still does.Any kind of holiday she thinks is just great,I was looking at the calendar and McKayla's birthday lands on Easter Sunday this year she will love that.My Dad gave me the most beautiful card today he knows Kevin is not very romantic so since my Mom died he always gives me a nice card and a little something,because that is what she used to do every year it's so sweet.One year My Dad bought my Mom a dust pan and a broom and put a note on it that said you sweep me off my feet.We still crack up about that one every Valentines day.We are getting very excited for McKayla's room to get done they will be here this Saturday,she is gonna love it her own little dream room.I will take tons of pictures,I hope everyone has a great day! Jodi

Thursday, February 10, 2005 0:11 AM CST

McKayla is just doing awesome she loves looking at the pictures in the guestbook.I also show her all the other kids pictures that we know here on caring bridge,Kevin,Cory,McKayla and I will sit in the computer room and I will go through all the kids we know and I will give them a run down of their story.Acutally not just kids there are young adults struggling with cancer and people losing a parent which I can also relate to.
Anyone who reads this feel free to visit people's sites who post in the guestbook there are so many little hero's out there.
You know having McKayla being sick has been an experiance for us we got to see another side of life that we never would have seen.The kindness of people we don't know but have gotten to know.Today something special came a quilt made by Grandma Ginger we have never met her this is what she does for children how special is that.Grandma Ginger when I become a Grandma I wanna be just like you because your amazing.
And all the other people who take time out of their busy lives just to leave a message or send McKayla and Cory mail it just makes me want to go to the top of a mountain and yell People are amazing!
We are blessed I have to add this little story I was at the bank the other day and I said to the teller "How are you"? And she said "I am having a bad day" So I said to her "Do you have kids"? and she said "yes I have two" I asked her if they were healthy and she said yes I said is anyone you know sick or has anyone close recently died and she looked at me like I was crazy and she said "no".So I said "well it sounds like your having a pretty good day to me."So anyway she thought I was a witch but I was just having one of those days where I was thinking there are so many people who use the term "I am having a bad day so loosely".
I have to say my Mom instilled that in me and having McKayla and experiancing the world of sick children and all the grieving parents out there and there are so many,I have to bust everyone's chops if they say they are having a bad day without good reason.
So that said those guys from Sherwood Park are trying again to play the world'slongest hockey game and they are raising money for kids with cancer so if you want to check it out or donate money you can go to www.worldslongesthockeygame.com and remember you can also help by donating blood or bone marrow you can call 1-888-to-donate for more information.
I hope everyone has a rainbow day! Jodi

Monday, February 7, 2005 10:41 AM CST

Well we have been very busy lately I worked 6 days straight and then I get family day weekend off because make-a-wish is coming to do McKayla's room we are getting very excited.Cory also has a hockey tournament that weekend.They had another game on Saturday and they lost,thats the way it goes I feel sorry for those guys.My brother Kenny is here from Vancouver it is so nice to see him McKayla is really happy about it too.She still has a fear of different things though on Friday we picked her up from school in my Dad's car and she did not want to get in because it was not ours.Then we got to my Dad's and she did not want to go in I knew if I just made her stay for a bit she would be o.k so I told her slush had spilled in her boots so we had to wait till they dried and she slowly inched her way in after about 15 minutes and then she did not want to leave.So that was good,we spent a lot of time there this weekend and she was very happy to be around everyone.She was interacting with my little niece Cassidi which was also good because normally McKayla will just ignore her.I am still seeing so many postive changes in McKayla things that are so normal for her age it is just great.My sleeping beauty was supposed go to school this morning but there was know way she was getting up I tried for an hour she was just way to tired so I just had to let her sleep.I remember how poorly she used to sleep we would have to tip toe aound here and if anyone would make a sound she was up and that was it,oh how things have changed.Now a train could go through the house and she would not even flinch she is catching up on 6 years of no sleep.I hope everyone has a great day and please pray for all the sick kids out there,there is so many.Jodi

Wednesday, February 2, 2005 1:43 PM CST

Today was our hospital day McKayla had to go for her bi-weekly blood work.Well McKayla never fell asleep unitl 5am so this made for a very interesting morning.First of all getting her dressed was a real challenge since she only had 2 hours sleep,anyway I got that done got her in the car and she was fast asleep again.All the way to the hospital I was praying that we would get a meter out front because the underground is always lined up and the other parking is about a 1 km walk not good with a groggy kid.There are only 8 meters out front and we got one it was wonderful you know your having a good day when you get a meter out front!So we got to the lab abd McKayla fell asleep right away on the chair there but they were not busy at all so she got in right away.Well don't try and give a kid who has had no sleep a needle she was not to happy about the whole situation.We did it though and we went back in the car and she fell asleep again.I did not send her to school today as as she probably would have fell asleep there.The weather is so awesome here I love it,everything is melting.The other day I was outside and I was waiting for McKayla to come out Cory was helping her put her boots on.Well Cory saw my Dad drive up and my Dad only lives across the street so Cory says to her "hurry up McKayla and go see Papa"!McKayla turned around looked at him and said "easy"!That was funny because if McKayla is ever upset Cory always says to her "easy McKayla" well she picked up on it.She is starting to get a little bit of a cold but other than do doing well.She has been playing beach in our living room the last couple of days she has the towels laid out and all her dolls are tanning it is funny,great imagination.Feb 23 she goes for all her tests it is a full day show so I am preparing her now.I hope everyone has a great day.Jodi

Friday, January 28, 2005 11:28 AM CST

I am so happy today I just thought I would share that!Savannah is doing way better and may go home next Wednesday that is awesome.I want to wish Mrs.Pawlyna a fun and safe trip to Europe I hope she gets to relax,it takes special people to work with special children!So yesterday I went to Cory's first basketball game I think he was nervous that was the first game he ever played they won.With hockey it is so natural for him I had him on skates when he was two.McKayla did not want to go to the game she must have known there were no treats there.Lastnight we had so much fun if someone was looking in our window they would have thought we were all crazy.Since McKayla is not with her peers at school very much(it is not in her comfort zone)I started singing all these kid songs and usually when I do that she tells me to stop because I am a terrible singer but she was laughing and dancing.So we started doing the hokey pokey,and ring around the rosy,and that song head and shoulders,knees,and toes.Well she thought this was awesome here Cory ,Kevin and I are doing this in the kitchen I don't think I have ever seen her enjoy herself so much it was awesome.She is just like a sponge right now taking in everything.So later on we were going through her book it has letters and pictures from A-Z she got everything right until we got to Z.There was a picture of a Zebra and she said "camel" I said "no McKayla that is a zebra" this went on for sometime.So she took the book over to Kevin as if I was crazy and she said "camel" Kevin told her it was a zebra she still does not believe us it was so funny.You just had to be there because she got really serious.McKayla loves watching the show Little miracles it is about sick kids,she watched the whole thing lastnight and she was repeating a lot of what was being said on there.It is so neat all the great things we have seen with McKayla,I have always had really high hopes for her and I strongly believe she will exceed everyones expectations of her.I hope everyone has a great and safe weekend.Jodi

Tuesday, January 25, 2005 11:57 PM CST

We had a good day today McKayla loves the sun so when she gets up and it is sunny she is very happy.She is still being a stinker about going to school not as bad as it was but she puts on a little show,I was really trying not to laugh today because she is such a drama queen.If education is not her strong point in the future I have know worries that she will find something very lucrative in performing arts or there is always the running thing cause that girl can cruise.Cory had hockey tonight it was a good game Cory worked his butt off,then we had to do homework McKayla loves it now when I do homework with Cory because she thinks that she is doing her homework as well.Before McKayla had her transplant she would get so mad when Cory and I sat down together she would try and write on his homework and everything it was terrible.Cory never had to use the excuse that his dog ate his homework,his sister took care of that for him.I have sure noticed a huge difference in Cory this year too he has always been a pretty laid back kid even when he was little he was my dream baby that kid would eat and sleep and that was it you barely ever heard a peep out of him.He walked early and talked early,he just seems happier all the way around now it is nice we are all happier.Kevin now has the flu so it made its round in our family,Kevin is the hardest to take care of out of everyone you would think he was dying!Anyway I hope everyone has an awesome day I am off to work!!Jodi

Monday, January 24, 2005 3:13 PM CST

Well what nice weather we are having lately I love it McKayla thinks it is spring I wish! I am sure we have a lot of winter left yet.Cory and McKayla made this awesome snowman yesterday but it fell over it was to warm.Our dog Minnie me who is with McKayla above is our special dog.One night McKayla was having seizures and we didn't know and Minnie Me would not leave her alone.Minnie was crying like crazy and we looked and we could not wake Mckayla up I am so glad we have this awesome dog.I can't believe the one picture I got of McKayla she looks exactly like my Mom she lives on!I was looking at so many web pages the other day I got so upset there are so many kids with cancer so today I mailed away forms to become part of the national bone marrow registry.I was thinking maybe there is something I can do,the chances are not that great that you will ever match anyone but just in case it made me feel so much better I think in Canada there are only 243,000 people on the list that is not very many.You can check out Canadian blood services if you are interested or you can donate blood.Thank you for another day of health! I hope everyone has a great day.Jodi

Saturday, January 22, 2005 9:50 AM CST

Well the flu has passed,it is always a great reminder to not take good health for granted some people feel like that every single day LITTLE KIDS!
I look through other caring bridge sites and see what these families go through.Today I just think why,why does this happen to little kids.
Savnnah is still struggling I can't wait for the day I go to her site and her Mom says they are doing great and going home to enjoy life.
I don't mean to sound negative but boy it is so rough for these kids,parents having to deal with pallitive care for there children there is something really,really wrong with that picture.
McKayla contiues to do well last night we actually watched a movie with her that was not a cartoon so that was a small miracle in it's self.One of the Dad's from True kids said the day these kids are Transplanted is the day they turn 0.Everything starts then for them I am seeing that with my own eyes McKayla is making leaps and bounds.
There are a couple of kids on true kids these are kids who have Urea cycle disorders who have been tranplanted they are having health issue's that are unknown right now and I am praying for them to.I thank God for everyday of health we have with McKayla.I hope everyone has an awesome day.Jodi

Thursday, January 20, 2005 4:44 PM CST

So my ole liver is working great,there was a lab error now the important thing is to find out if those were McKayla's labs because if they were something is up.Anyway we will see what happens I figured it was kind of strange that I had done so well and then all of a sudden something was wrong.McKayla had a great day today she was not to happy at first I had to wake her up early to go and drop off Cory's math binder so she was a little cranky.Now she is enjoying a snack,anyway please pray for the families whose children have died and the ones who are struggling to live.I have come across so many websites in the last couple of days where someone has just lost there child it is so sad.Anyway I will keep you posted on the blood work mess up I hope it was just one big error.Jodi

Wednesday, January 19, 2005 9:24 PM CST

Well McKayla is feeling a lot better today she sure was sick but it did not last long at all thank God!She is not eating normally yet but I am not too worried about her,She sure gets over things quick.If anyone wants to visit Savannah's website it is: http://www.caringbridge.org/nc/savannah.
I went for my blood work tonight so we will see tomorrow what the results of that are I am not worried.Anyway I do not have much time tonight McKayla is a little cranky still and wants my full attention I hope everyone has a great day and be careful with that freezing rain it is so slippery out there.Also thank you everyone for all the mail and the nice entries in the geustbook.Jodi

Tuesday, January 18, 2005 10:20 AM CST

Well McKayla is sicker than a dog she has it coming out of both ends and she is white as a sheet.Someting had to come sooner or later I am thinking it is the flu even though she did get the flu shot.We will see what happens in the next couple of hours I will put in a call to our transplant nurse.I am now convinced that mine and McKayla's blood work was mixed up it could have happened so easily.I am having mine done again tomorrow,so we will see it would just make the most sense but I have been wrong before.Anyway please pray for Savannah she is not doing well at all again.Have a great day! Jodi

Tuesday, January 18, 2005 0:21 AM CST

Nothing to report just wanted to share this story.


You are My Sunshine, My only Sunshine
(Be prepared to get watery eyes!)


Like any good mother, when Karen found out that another baby was on the way, she did what she could to help her 3-year-old son, Michael, prepare for a new sibling. They found out that the new baby was going be a girl, and day after day, night after night, Michael sang to his sister in mommy's tummy. He was building a bond of love with his little sister before he even met her.

The pregnancy progressed normally for Karen. In time, the labor pains came. Soon it was every five minutes, every three, every minute. But serious complications arose during delivery and Karen found herself in hours of labor. Would a C-section be required? Finally, after a long struggle, Michael's little sister was born! But she was in very serious condition. With a siren howling in the night, the ambulance rushed the infant to the hospital intensive care unit at St. Mary's Hospital.

The days inched by. The little girl got worse. The pediatrician had to tell the parents there is very little hope. Be prepared for the worst. Karen and her husband contacted a local cemetery about a burial plot. They had fixed up a special room in their house for their new baby but now they found themselves having to plan for a funeral. Michael, however, kept begging his parents to let him see his sister. I want to sing to her, he kept saying.

Week two in intensive care looked as if a funeral would come before the week was over. Michael kept nagging about singing to his sister, but kids are never allowed in Intensive Care. Karen decided to take Michael whether they liked it or not! If he didn't see his sister right then, he may never see her alive.

She dressed him in an oversized scrub suit and marched him into ICU. He looked like a walking laundry basket. The head nurse recognized him as a child and bellowed, "Get that kid out of here now. No children are allowed."

The mother rose up strong in Karen, and the usually mild-mannered lady glared steely-eyed right into the head nurse's face, her lips a firm line. "He is not leaving until he sings to his sister" she stated. Then Karen towed Michael to his sister's bedside.

He gazed at the tiny infant losing the battle to live. After a moment, he began to sing. The pure-hearted voice of a 3-year-old, Michael sang: "You are my sunshine, my only sunshine, you make me happy when skies are gray." Instantly the baby girl seemed to respond. The pulse rate began to calm down and become steady!

"Keep on singing, Michael," encouraged Karen with tears in her eyes. "You never know, dear, how much I love you, please don't take my sunshine away."

As Michael sang to his sister, the baby's ragged, strained breathing became as smooth as a kitten's purr. "Keep on singing, sweetheart." Karen begged. "The other night, dear, as I lay sleeping, I dreamed I held you in my arms". Michael's little sister began to relax as rest, healing rest, seemed to sweep over her.

"Keep on singing, Michael." Tears had now conquered the face of the bossy head nurse. Karen glowed. "You are my sunshine, my only sunshine. Please don't take my sunshine away..."

The next, day...the very next day...the little girl was well enough to go home.

The medical staff just called it a miracle. Karen called it a miracle of God's love.

Sunday, January 16, 2005 5:36 PM CST

I had to share this.




Sally jumped up as soon as she saw the surgeon come out of the operating room. She said: "How is my little boy? Is he going to be all right? When can I see him?"

The surgeon said, "I'm sorry. We did all we could, but your boy didn't make it."

Sally said, "Why do little children get cancer? Doesn't God care any more? Where were you, God, when my son needed you?"

The surgeon asked, "Would you like some time alone with your son? One of the nurses will be out in a few minutes, before he's transported to the university."

Sally asked the nurse to stay with her while she said good-bye to son. She ran her fingers! lovingly through his thick red curly hair.

"Would you like a lock of his hair?" the nurse asked.

Sally nodded yes. The nurse cut a lock of the boy's hair, put it in a plastic bag and handed it to Sally. The mother said, "It was Jimmy's idea to donate his body to the university for study. He said it might help somebody else. "I said no at first, but Jimmy said, 'Mom, I won't be using it after I die. Maybe it will help some other little boy spend one more day with his Mom." She went on, "My Jimmy had a heart of gold. Always thinking of someone else.. Always wanting to help others if he could."

Sally walked out of Children's mercy Hospital for the last time, after spending most of the last six months there. She put the bag with Jimmy's belongings on the seat beside her in the car. The drive home was difficult. It was even harder to enter the empty house. She carried Jimmy's belongings, and the plastic bag with the lock of his hair to her son's room. She started placing the model cars and other personal things back in his room exactly where he had always kept them. She laid down across his bed and, hugging his pillow, cried herself to sleep.

It was around midnight when Sally awoke. Laying beside her on the bed was a folded letter. The letter said:

"Dear Mom, I know you're going to miss me; but don't think that I will ever forget you, or stop loving you, just 'cause I'm not around to say I LOVE YOU.. I will always love you, Mom, even more with each day. Someday we will see each other again. Until then, if you want to adopt a little boy so you won't be so lonely, that's okay with me. He can have my room and old stuff to play with. But, if you decide to get a girl instead, she probably wouldn't like the same things us boys do. You'll have to buy her dolls and stuff girls like, you know. Don't be sad thinking about me. This really is a neat place. Grandma and Grandpa met me as soon as I got here and showed me around some, but it will take a long time to see everything. The angel's are so cool. I love to watch them fly. And, you know what? Jesus doesn't look like any of his pictures. Yet, when I saw Him, I knew it was Him. Jesus himself took me to see GOD! And guess what, Mom? I got to sit on God's knee and talk to Him, like I was somebody important. That's when I told Him that I wanted to write you a letter, to tell you good-bye and everything. But I already knew that wasn't allowed. Well, you know what Mom? God handed me some paper and His own personal pen to write you this letter. I think Gabriel is the name of the angel who is going to drop this letter off to you. God said for me to give you the answer to one of the questions you asked Him 'Where was He when I needed him?' "God said He was in the same place with me, as when His son Jesus was on the cross. He was right there, as He always is with all His children.

Oh, by the way, Mom, no one else can see what I've written except you. To everyone else this is just a blank piece of paper! . Isn't that cool? I have to give God His pen back now. He needs it to write some more names in the Book of Life. Tonight I get to sit at the table with Jesus for supper. I'm, sure the food will be great.

Oh, I almost forgot to tell you. I don't hurt anymore. The cancer is all gone. I'm glad because I couldn't stand that pain anymore and God couldn't stand to see me hurt so much, either. That's when He sent The Angel of Mercy to come get me. The Angel said I was a Special Delivery! How about that?

Signed with Love from: God, Jesus &Me.

Sunday, January 16, 2005 5:00 PM CST

So we have had a good weekend we did not have any hockey this weekend.Today we are just being really lazy we are going to watch a couple of movies I am so glad that it is warming up,that cold was insane.I cannot believe how everyday lately Mckayla is saying new words it is really starting to come.She has had so much trouble with her S's and they are starting to come to she wanted to take a picture yesterday and she told me to smile she said it perfectly.She drew this awesome picture I am going to scan it and put it on here it is of her dino pushing a stroller.This is great before the transplant McKayla could only scribble so it is an amazing improvement.On Friday night McKayla fell down our stairs we have laminate flooring on our stairs she hit her back pretty hard I felt so bad for her,she seems ok though.Anyway I hope everyone has a great day.Jodi

Friday, January 14, 2005 6:43 PM CST

It's warming up out there only -22 now it has been so cold this week,I put off going to the hospital until today.McKayla was awesome there she was just a little angel,I was so proud of her we had to wait at least 30 minutes and she sat with me the whole time I was beaming.She helped the girls give me my needle she knows exactly what to do,from step one all the way through.Then she went and got me a sticker and a band-aid what a kid.McKayla also did very well at school this week which makes me so happy,her speech is still getting better and better everyday.I have been having really bad headaches all week I can't get rid of them.So I dropped McKayla off at school today and the U of A phoned from liver transplant,and my blood work was not good.Apparently one of my liver enzymes my ast is 247 and normal is around 20,and I was told that was probably the cause of the headaches.So they were going to try and get back to me today and see what to do but if not on Monday they would call so I guess it will be Monday.I am a little nervous because there is so little known about the long term affects of doing this.So we will see,I asked right away if they were sure it was my bloodwork and not Mckayla's and they said they tripple checked.Anyway other than that all is well,Savannah is making a quick turn around I am so happy for them she is off the vent now and doing physio.Go Savaanah your a fighter!I hope everyone has an awesome weekend.Jodi

Monday, January 10, 2005 11:24 PM CST

Well good news my little angel actually went to school today.I have to say you really have to trick her,I Say to her "McKayla do you want to go out" and she will decide at that point if she is leaving the house that day.So today she got ready in all her really,really comfortable clothes and two different socks and away we went.McKayla has decided that she is not going to wear any of her new clothes and she will not play with any of her new toys from Christmas.So if you see a kid walking down the street with pants and inch to short and two different socks on you will know it is McKayla.The only thing she is wearing is her new coat go figure.McKayla used to love getting new things we would always use it for a bribe, a present.I was thinking this Christmas we should have just wrappped up all her old stuff and let her enjoy it all over again(Tee Hee).Anyway my wonderful child sure has a mind of her own and she does not like change at all.On that note the make-a-wish foundation is doing McKayla's room on Febuary 18th so we are very excited for that.I went and donated blood tonight I go every 60 days there have been so many accidents lately you never know when you will need it for someone you love or yourself.Mrs.Karisse we miss you to,we hope to see you soon.Savannah is starting to do a little better which is great I hope soon they get to enjoy the life we have been so fortunate to live this last year.on Wednesday McKayla and I have to go for bloodwork,that will make McKayla happy they always let her help when I get my bloodwork done.Anyway I hope everyone drives safely,and don't get to cold out there.Have a rainbow day!! Jodi

Friday, January 7, 2005

Kevin will not be to happy about the new photo that is up but I think it is funny,Ha HA! I captured McKayla looking at her presents I like that shot.McKayla never wears her shirt now for some reason I really pray she will grow out of this.I know where my scar is you either have know feeling or a really weird sensation when things rub on your stomach at all so I can really understand her not wanting a top on.So McKayla has yet to return to school,she has been very laid back lately extra tired.I thought I was going to get her to go today I asked if she wanted to go and get some little candies to give out to everyone we did that but when we pulled up to the school she freaked.The funny thing is she cries when we get there but when I go to pick her up she never wants to leave,what a kid.Mrs.K told me to tell McKayla it was her job to go to school she liked the sound of that but it did not work either.I will figure something out by Monday I am determined to get her back in there.The thing is she is doing so well,I go over a lot with her at home but it is just not the same being at school is so good for her.I notice when Kevin or I have been leaving the house lately she has been getting upset she grabs onto one of us and says "stay".The other night Kevin when to Walmart and she got a picture of him and was saying "miss him" it was so funny because he was only gone for 30 minutes.Anyway thank you everyone for the nice guestbook entries.The letters I write to the kids I will give them on their 18th birthdays.I just thought I would share this one with everyone because so many people have been a part of this whole process.Please continue to pray for Savannah she is still not doing well at all.I hope everyone has an awesome day!Jodi

Wednesday January 5,2005.

Dear McKayla
Today is a very special anniversary for you,I wanted to write you a letter and let you know how I feel.I have written you and Cory letters since the time you were both born and they are in your baby books.Today is the anniversary of your liver transplant the day I finally got to do something about the Citrullinemia that was causing so much havoc in our lives.A reporter asked me when we were on the news if I felt really close to you after the transplant because now we had a special bond I said it feels the same because we had a special bond from the moment the doctor laid you in my arms the day you were born and the love a Mother has for her child it so powerful and strong.Before the transplant I loved you as much as anyone possibly could and after the transplant it was the same.It is hard sometimes to believe McKayla what we have been through there has been so much.I remember,4 years ago your brother Cory wrote a story it was called a wish for my sister,he never showed it to me I came across it when I was cleaning I was crying so hard reading it.In the story Cory wished there would be a cure for Citrullinemia well McKayla Cory's wish for his sister has come true.McKayla you have impacted our lives so much you will never know how much. You have this magical spirit about you,when I was 6 months pregnant with you I had a dream that you were in the I.C.U that was really strange I think you were trying to warn me of what was coming.When you were born you were so beautiful and when you got sick my heart broke for you,you were 5 days old and the most beautiful thing I had ever seen and you were clinging to life.When I felt I had know more strength I looked at you and you gave me the strength to go on.You McKayla a tiny little six pound baby that is when your magic started.You gave me more strength and courage than I ever thought I could have looking back on it you were preparing me for what I would have to do six years later.We have had our struggles beautiful princess not just health wise but with a lot of things there were many nights I would stay up wondering if I was making the right choices for you.
Did I put you in the right programs?
Did you get enough speech theraphy?
Was there more I could do to move your development along?
When you were about 18 months old I found out you had a severe tongue tie,so I wanted to get it clipped it was very controversial but I wanted you to have every benefit you could to live the best life you could.
Of course we prayed for gene theraphy but a very brave boy named Jesse decided he would put his life on the line to try and help kids like himself and you and all the kids who would be born with Urea Cylce disorders later on.He paid the ultimate price with his life.When that was a definate no go I was determined that you were going to have a liver transplant.I did not want to lose you McKayla but here it felt like I had your life in my hands.This was my first posting really looking into transplant.

Jodi Phelan
Considering Transplant
Thu Dec 5, 2002 10:07
205.188.209.112

Hi
My name is Jodi Phelan I live in Alberta,Canada.I have a 5 year old girl with Citrullinemia and would like to get as much info on liver transplant as possible,personal experiances good and bad.I would also like to know how you come to the decision to do it and feel good about it.Thanks Jodi Phelan(Mom to McKayla 5 years old Citrullinemia)

There were wonderful people on this website that I still am part of daily who helped me through everything,they had been where I was.This is how one Mom responded:


Re: Considering Transplant
Thu Dec 12, 2002 14:53
68.42.66.28

Jodi,
Considering transplant is a very personal decision. Not every one agrees that it is the right thing to do. You must weigh the pros and cons and relate them to your own family values. Some think it's trading one chronic illness for another and some feel it's a given that if the chance comes around, they would snatch it up.


The participants here on Truekids are few but are a very strong resource for you as we want very much to help parents like you. We have all been where you are now.

Its a long, rough road and a terrible position to be put in. It's the love for your child that will get you through it.

I wrote this after I was discharged:
Everything is well
Mon Jan 12, 2004 18:56
152.163.253.34

I have been discharged from the hospital feeling well minus the 32 staples I got out today.I just have a second I am sitting here crying reading all the support. Tyler and McKayla are both on the ward now a step down from P.I.C.U and they are side by side Tyler was up in his wheelchair today.McKayla is doing awesome She is out of bed and walking She will be discharged if everything goes well at the end of this week none of this has sunk in yet.I just have to say.Tyler and McKayla and all of these kids are so strong I got to feel some of the pain they experiance a small fraction and I am shocked I am so shocked there are know words.Love you all and to all you kids you are my hero's!!!Jodi Phelan Mom to McKayal tx 01/05/04 WOW!!!
I struggled with the decision for a while there were many questions,my main thing was what if something happened to you I could not have handled that,but then there was this hope that you could regain the normal life that you should have had.All I really wanted was some peace for you,when you were suffering it just hurt so bad.I really never asked the question why,I know a lot of people do but I always thought well if it wasn't us it would have to be someone else.We get to truly appreciate health it is very important it is something we all take for granted until it affects us,I know I did.Even though your Grandma said to me everytime I complained thank God you can walk and your not sick in the hospital.I have to say McKayla me donating to you was not an option from the start.We were at our meeting with the transplant surgeons and they told me we could do a living donor operation I said I would do it and they said they don't normally like the parents doing it,but I insisted I thought please give me some control over this situation.I found out that day that you and I were the same blood type that was the first step.Then I had a whole bunch of testing done and every phone call I got with results would take my breath away I was so excited we were so close.Then it was a go on January 5,2004 we stayed at the hospital the night before you and Daddy were cozy in the hospital bed and the nurse woke me up at 5:00am and told me it was time to go so I went up to the fifth floor and got ready.So that's when I started getting scared,I was so happy when I saw Auntie Thelma walk in that door it made me feel better,the nurse came in and she said she knew Grandma I knew that was a sure sign everything was going to be o.k.So they wheeled me down to the O.R waiting room I had never had any operation so I was nervous.They wheeled me into the operating room there were a lot of people in there I was really scared and then next thing you know I woke up at 6:00pm that evening I looked at the clock first thing and the nurse told me you were fine.I worried so much for you and for Cory this was a lot for the little guy to go through but you kids are strong I am so thankful for that.All you wanted after your surgery was for people hold your hand ,before the surgery when I was trying to prepare you for what was going to happen I said were are going to have an operation and all you would say is hold hands and we would lay there and you would hold my hand.
One year we have gone without being back in the hospital
One year and your health and my mind have been stable
One year I have not had to worry that you were not going to wake up in the morning.
We did it McKayla,we have come a long way and not just me and you but,our family and friends who stood by us through this all.All the people you have cheering you along the way.We are fortunate, McKayla you are the daughter I always dreamed of those beautiful green eyes and that stubborn streak.The ability to fight and be strong,McKayla in your life always stand up for what you believe in,give respect where respect is do,always help someone in need.Stand strong my daughter and never let anyone ever make you feel ashamed or embarassed of who you are or what you believe in.You are a strong Phelan woman and I am so proud to call you daughter.Love Mommy

Thank you everyone for all your support,thank you to Bears who care for all the mail and checking McKayla's site all the time.Thank you Mom for watching over McKayla,Cory and I.I pray that McKayla's health stays stable we have hit a huge milestone in the transplant process.I really hope all her tests will come out good in Febuary.I am thankful for everyday of health we are given.I cannot believe it has been a year we are taking McKayla out for dinner that's what she said she wants to do.One year ago today McKayla recived the gift of life,please consider signing your organ donor cards.Jodi Phelan

Tuesday, January 4, 2005 4:24 PM CST

Well we had a quiet New Years,Cory went over to his friends house and Kevin and Mckayla and I stayed home.Kevin fell on the ice and about six hours later he was screaming in pain a couple of days before New years anyway he developed a bacterial infection in his foot so he has not been able to do to much.McKayla loves to take care of him though she would make a great nurse,she gets him blankets and pillow's.Lastnight McKayla took everything off of my bookshelf and dusted it and put everything back on really nice I was so proud of her.Savannah is still not doing well she is on life support and has quit breathing a few times I really am praying things get better for them,and soon.It just makes me realize how lucky we are and all the little things I worry about with McKayla are really trivial.She is getting back to not wanting to go anywhere even my Dad's house,so we will deal with it.Well one year ago today we were running around the house getting ready to go to the hospital for the surgery,we have been so blessed in this year and I cannot believe everything that has happened.I have to go and pick up my pictures of McKayla I hope to have them on here tonight.I hope everyone has a great day!Jodi

Saturday, January 1, 2005 1:50 AM CST

HAPPY NEW YEAR!
This picture was taken one year ago today it was not printed until the 7th though.It gives me goose bumps to read this article that was in the paper.I couldn't read it the day it came out because I could not see straight from the morphine I was on, focusing was a hard task.





Sherwood Park News — Jodi Phelan and her six-year-old daughter, McKayla, spent Monday in neighbouring operating rooms.
Jodi’s life will to return to normal once she recovers from her surgery.
But her daughter, who gained a slice of her mom’s liver, will experience a dramatic change.
McKayla, you see, suffers from citrullinemia, a rare urea cycle disorder caused by the lack of an enzyme that removes ammonia from the bloodstream.
If the ammonia builds up, someone with the disorder can suffer brain damage or even die.
McKayla was on the brink of death five days after her birth when a doctor diagnosed her.
Now, although she’s monitored continually, her body is always filling with toxins.
“She’s a ticking time bomb,” said Jodi. “She could dive at any moment.”
Because McKayla can’t digest protein, she’s never eaten meat, she’s never had a glass of milk, she’s never tasted bread.
A moment of unapproved nibbling can cause so much havoc that the Phelans have a lock on their fridge.
McKayla, who is friendly and active, has survived with a no-protein diet, including an experimental formula containing the amino acids missing from the fruits and vegetables she eats.
She’s also been on a host of medications all her life.
All that changed for her Monday when Jodi donated a section of her liver to take the place of McKayla’s faulty organ.
Because the tissue regenerates, the piece of transplanted liver will become a functional organ in McKayla, while Jodi’s chopped liver will grow back.
While McKayla knew she was going to the hospital for an operation on her “tummy,” her protective older brother is more aware of the implications of the surgery and is looking forward to his sister gaining a normal life.
“It’s going to be weird,” said Cory, 11, “because all her life she’s been eating vegetables.”
Although Jodi initially thought she would have to change her diet too, she and Cory eat normally as specialists told her McKayla would have to learn to deal with people ingesting foods she couldn’t.
Until recently, a transplant wasn’t an option for anyone suffering from McKayla’s disorder.
Geneticists had for years told Jodi gene therapy could eventually correct the condition, which is caused by a recessive gene in both parents. That plan, however, proved a dead-end.
Meanwhile, Edmonton’s University Hospital was busy making tremendous strides in transplant procedures.
“Twenty minutes away, we have some of the best surgeons in the world,” notes Jodi. “I’m so glad we live here.”
When doctors told her McKayla was one of the select few deemed suitable for a “living liver” transplant, there was no question about the donor.
“My little brother wanted to do it, but it’s asking so much,” said Jodi.
Besides, after watching McKayla suffer for so many years, Jodi ached for the chance to aid her recovery.
Because McKayla, like many children with urea cycle disorder, has delayed speech, she can’t talk to her mom.
Jodi hopes their common surgery will give her a greater understanding of her daughter’s extended recovery.
“I’ll get to feel some of what McKayla goes through, and we will both have the same scar,” she noted.
Jodi’s hospital stay is estimated at seven to 10 days. She’ll experience lower energy for six to eight weeks as her liver grows back.
McKayla, on the other hand, will remain in hospital for about three weeks, if there are no complications.
Even though the slice of her mom’s liver has to regenerate in her body, as soon as it was transplanted, McKayla was to start processing protein, which means no more formula and no more medications.
“Our life will change at a drop of a hat -- providing all goes well,” said Jodi.
She was glad their operations were simultaneous as she wouldn’t be awake to worry about her daughter’s 10- to 18-hour surgery.
Although Christmas is an exciting time for families, this year the Phelans were looking forward to them ending.
“It’s hard waiting,” said Jodi last week. “I’m not scared yet. I’m just really excited.”
While thrilled McKayla will be able to munch on kids’ favourites like pizza and McDonald’s burgers, Jodi is also anxious about other possibilities.
She knows, for instance, of a five-year-old in the U.S. who immediately began to talk after her liver transplant as the toxic buildup in her body had been stymying her neurological development.
Jodi hopes McKayla’s life will alter in unexpected ways too.
“After this McKayla will be able to thrive,” said Jodi. “It’s a new year and a new beginning for us.”
Jodi and McKayla’s family reported at press-time Tuesday that the transplant had gone smoothly. So smoothly that the minimum 10-hour operation had taken only 41/2 hours. Mother and daughter were stable the morning following their surgery. Doctors now have to monitor McKayla’s new liver to see if her body accepts it.






--------------------------------------------------------------------------------

Tuesday, December 28, 2004 3:55 PM CST

So we had a very nice Christmas it was a lot of fun this year.McKayla was so excited for Santa to come and then in the morning after Santa had been there she danced around the living room saying "Santa came, Santa came"!I have been really busy Cory has a hockey tournament in Beaumont so we have been running back and forth I don't mind though I love it!McKayla came with me this morning ands she was really good there.My Brother Ken could not make it due to the weather,so that was too bad we were all excited for him to come.Other than that it was really great,McKayla has been talking like crazy I don't think she actually ever stops she really likes the sound of her own voice.Little Savannah is starting to do better so that was great news to hear.I can't believe that it has almost been one year for McKayla,we are going to have a huge celebration!The Stollery called the other day and they want us to be a part of the radio-thon again so that will be fun.It is always a very emotional thing to do but well worth it.Anyway I have to get busy cleaning up I hope everyone has an awesome day! Jodi

Thursday, December 23, 2004 10:27 AM CST

Well I have to say it is chilly out there,McKayla and I just got back from the hospital she had to have her blood work done.I had to wake her up at 7:00am when I got home from work she was a crabby bear.Today she cried for her needle she does not normally do that but considering that she usually sleeps until 11am at least, I guess that didn't make things any better.McKayla actually went to school yesterday without crying that is amazing she was really excited because she had some gifts to give out.The last day of course but thats o.k I will take what I can get at this point in time.She is really excited for Christmas and Santa coming Christmas is a lot more relaxed this year than last I am so thankful for this year we have had I would not trade it for anything in this world.I am really praying for all the kids who are sick and in the hospital at this time of year there are so many.I am also praying for Savannah and her Mom and Dad and her big brother E.J who is the same age as Cory.We are luckier than we will ever know,so many kids have complications,I don't want to jinx us but I feel so fortunate.I wish all kids could have the same outcome as McKayla did.I hope everyone has an awesome Christmas,safe and healthy.I just want to say thank you again for all the mail McKayla has recieved,thank you for taking the time to do that it is very special to McKayla and Cory.Jodi

Wednesday, December 22, 2004 11:50 AM CST

I don't have much time to update but I just wanted to ask everyone to pray for Savannah because she is not doing well at all.We figured out McKayla is not only scared of going to school but to other people's houses.We went to my brother Jason's the other night and she went crazy crying just like when we get to school.She has gone to school the last two days though and done quite well even though I had to drag her in both times,she is a strong kid.I will write more later please pray for Savannah and her family.Jodi

Monday, December 20, 2004 11:21 AM CST

Well 5 days till Christmas and I still have not started my shopping.I do this every year one year it back fired on me though On Decenber 18 McKayla ended up in the hospital with a really bad respitory infection she got out on Dec 23.I did get it all done though,tonight I am going to shop till I drop.McKayla's been doing very well at home here,I am just praying I can get her to go to school today that little stinker is so stubborn.Lastnight she fell asleep under the Christmas tree it was so cute we were watching a movie and I looked over and she was sound asleep.Kevin had his company Christmas party on Saturday it is almost the only time of the year that we get out and do something together so it's usually a great time.We had a pretty wicked wind storm here yesterday and McKayla was really scared she was hanging on to me for dear life,it was nice though I don't get as many cuddles as I used to.I really do love Christmas ,it is so nice just to be around your family.My brother Aaron cannot come home this year though,we will miss them.He lives in Vermont I am going there in Febuary so I am looking forward to that.Thank you to everyone who has sent Cory and McKayla mail they just love it it is so thoughful.So on Friday Kevin and I were sitting in the kitchen and McKayla was doing some crafts in the living room then I heard McKayla say "haircut pretty".Well as many of you know McKayla's hair just finally started growing in this last year it is very precious to me anyway.So I run into the living room and she had a handful of hair the funny thing though is her hair is so thick you could barely tell.It could have been way worse than it is.what a kid!Take care everyone! Jodi

Friday, December 17, 2004 6:44 PM CST

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

Snowflakes
by Anna MacPherson

Each one comes in a different light
A different reason a different night
The brightest thing you'll ever know
Love for them will forever grow
Every one has a different face
Each of them their own special grace
It's in our lives they frolic and sing
Just to see them alive is a beautiful thing
They bring us joy they give us love
they're a beautiful creation from God above
They laugh they play, make us smile and gleam
Let's walk amongst them and share their dream
A sparkling snowflake is truly unique
Its your understanding they wish to seek
Open your hands and soon you'll see
What beautiful people these snowflakes can be

I Needed some inspiration today,I took McKayla to school yesterday and she went crazy,it is really emotionally draining.It's like this though if I can be really strong 28 days out of the month I can allow myself to be weak for two. Savannah is rejecting her new liver,I am praying so hard for them right now.I hope everyone enjoys these poems,and please pray for Savannah. Jodi

Wednesday, December 15, 2004 10:18 AM CST

Well McKayla had her best day in a long time yesterday,she cried a little when we got to school but then she was fine for the rest of the day.That just makes me so happy,I want her to be happy that is the most important.We were on our way to school and she saw a "P" on the stop sign and she recognized it so that was awesome things are really sinking in with her.I noticed her speech is getting better and better,sometimes she will go a while with out any new words and then all of a sudden a whole bunch will come and that is happening right now,yippee!She has been sleeping a whole lot between 12-14 hours a day I think she might be going through a growth spurt that could also be the reason for her mood swings.I have to remember that it does not always have to be something drastic when things change with her it could just be a normal part of growing up.Her body was deprived of protein for so long that I am sure she is growing a lot quicker than most kids normally would.Anyway things are great,I hope McKayla has another great day today.On Monday we put up the Christmas tree she decided she didn't like it she said it was ugly and she took all the decorations off it.Then yesterday she changed her mind and decided she liked it that was lucky because we were thinking she would have to star in the movie "How McKayla stole Christmas".It was really funny actually,that kid is such a character I just love her so much.I hope everyone has a great day!Jodi

Monday, December 13, 2004 3:24 PM CST

I have added a link to McKayla's Hope song it is on the bottom of the page.We had a great weekend,Cory's team won first place at his hockey tournament.McKayla and Kevin put new floor on our stairs and in our hallway.McKayla was pretty serious about helping her Dad it was cute it was nice she got to spend time with him this weekend because he has been working a lot.Savannah continues to do well,I just read her webpage.McKayla is at school right now she seems to be getting back into it,except she pretty much decided she is not going to wear alot of the clothes she has so it is difficult getting her ready to go anywhere.We really hope her assistant Mrs.Karisse gets better soon.McKayla has had some emotional issues as everyone knows because I have been writing about them.On another website I go to a lot of the adults say they have had the same thing happen to them since transplant.That gives me comfort because if an adult is having issues surely a little seven year old girl is not really going to understand why she had to go through all of that,I guess it is just common sense some people just don't get that though.I think that you can get an opinion about things from experts,but if you haven't been through it know matter how many times you tell someone something they will never really get it.Sometimes this gets me all flustered,but I have dealt with it for 7 years and I will continue to do so.Cory has a bad cold right now so I am hoping he doesn't give it to McKayla.I hope everyone has an awesome day.Jodi

Saturday, December 11, 2004 10:02 AM CST

So I got off from work this morning and came on the computer to check out how Savannah was doing and she is doing great!Enter the world of sick children, through the internet I have met so many people and families.I came across two websites this morning where children have lost their battles with there illnesses.I wonder how you get through the loss of a child,actually you probably never do.There is so many inspiring people out there.I had to go to McKayla's room and kiss her thank God we have been spared that pain so far.It just really reinforces the fact that we have to love eachother every minute of the day.There is something I always ask myself when I feel stressed out and that is will this matter 10 years from now.And then I come back down to earth.Thank you God for my children and my family and friends.I wish strength to the two familes who lost their children.Lastnight we went to a birthday party and I found out my friend Carrie is FINALLY having a baby congrats to her and her husband Paul.I figure when Carrie is about 9 months I will go and rub her feet everyday,since she has always been there for me when I really needed her.On that note I just feel lucky today to have such wonderful people in my life.I hope everyone has an awesome weekend.Don't forget to smile!!! Jodi

Friday, December 10, 2004 3:08 PM CST

Well McKayla is at school,thank God for the great people there I can feel safe leaving her there.She cried a little at first but then she was fine.Little Savannah is doing well last I heard,so I will keep them in my prayers.I am glad McKayla is back at school though she is going to go from 12-3 till Christmas which is good because she slept until 11:30 and she was in bed by 10 she really needs that sleep right now so I think it is good all the way around.I am still working nights so it has been a little tough having her home I couldn't sleep until Kevin got home from work,but thats minor.Everyone is healthy right now and that is the important thing.We have a really busy weekend ahead of us,Cory has a hockey tournament and we have two birthday parties I am sure it will be fun though.So I am going to do some running around before I have to pick up Mckayla I hope everyone has an awesome weekend.Jodi

Thursday, December 9, 2004 12:40 AM CST

I just got the best phone call,Renee her little girl Savannah has Citrullinemia, is in surgery right now getting her new liver.Renee has followed McKayla since we started and now it is their turn to be free of that horrid disorder.PLEASE pray for them,they have been through so much and really deserve peace.If anyone is interested her website is www.caringbridge.org/nc/savannah.I sent down McKayla's angel medallion so Savannah could have as good a recovery as McKayla,Renee said it is taped to Savannah's teddy bear.I am just so happy for them.On another note it seems McKayla is a grade one drop out,but I love her just the same.I hope everyone has an awesome day.Good Luck Savannah,your new life is waiting right around the corner.Jodi

Wednesday, December 8, 2004 2:25 PM CST

So we got a new computer finally,so I can change the photo's more often.I got McKayla to school this week twice for a little while she wanted to give her teacher some flowers and she gave her a big hug.I know she likes everyone there,I think I will just inch her back in.My Dad always tells me I have the patience of Mother Theresa,But McKayla is a very strong willed child and sometimes she just has to lead me.Her mood is getting back to normal she is still saying she is cranky.So 4 years ago today my Mom died I just don't know where the time goes.My Mom was there with me when Cory and McKayla were born,she was the first person to hold McKayla boy did she love her grandchildren.Everytime McKayla was sick she dropped everything and was by my side.My Mom was only 53 when she died she was a special needs assistant boy would I love to have her advice right now she was very good at what she did.I know when they had the most difficult child my Mom could get through to them.I am very happy for the 25 years I had with my Mom she would always make us feel so good about ourselves,if I called her and there was even a twinge in my voice she knew something was wrong.My Mom and I were very close she was very close with my brothers too and we are still a very close family.I just wish she were here to see how things have changed.My brother Kenny finally fell in love and my brother Aaron has a beautiful little girl Maya Lynne is her name and my brother Jason has a beautiful baby girl Cassidi Laurel Lynne is her name.My Mom's name was Lynne and she was a beautiful soul she taught us so much and she always had the most positive attitude.I remember the very last hug she gave me and when I think about it it is almost like I am still right in that moment.We were all there when she died at 3:00pm December 8,2000.I did her eulogy at her funeral my brother thought I would lose it up there but I was her only daughter and I was proud to be standing in front of a packed church honoring my Mother.Cory and I were talking the other night and he said it is still hard to believe that she is gone.I know my Mom is watching over us but I still miss her so much when she died it left a big hole in my heart.I know a lot of people would say she was young when she died but my Mom would respond with at least I had 53 years that was her attitude she always appreciated what she had.Anyway anyone can be gone from our lives in a heart beat,I can't say I have any regrets where my Mom is concerned we spent alot of time together and plus we just lived across the street from eachother.She said when she was sick if one person learns something positive from her death it will have been worth it.I learned that even in my Mother's darkest hour she still had a smile on her face and all she cared about was if her kids and husband were going to be o.k with out her.Mom you are truly my hero you always were and always will be.Jodi

Friday, December 3, 2004 12:40 AM CST

On Wednesday we went to the hosptial normally McKayla's favorite place to go,she had a complete melt down there she was screaming when we went to leave I was trying to get her to the car and it looked like I was kidnapping her.All these people were just staring at us one Doc gave me a huge smile anyway I just kept on smiling.Her blood work came back it is all normal the Tx nurse told me though an infection could hide in the blood work due to the anti-rejection drugs.McKayla will not go to school again,and on Wednesday her and I were in the field behind our house and she was on her knees crying she looked up at the sky threw her hands in the air and yelled "WHY" I almost hit the ground.I tell ya it was a scene from a movie.Anyway the nurse told me to give her some tylenol and see what happens so I did and Wednesday night she was hopping all around the house saying "HAPPY".One problem solved we know she is in pain from something but what?So we had a urine done on her to rule out bladder or kidney infection just waiting for those results.McKayla will not tell us if she is in pain I don't even think she knows that it is not normal.The doctors said from the time she was born when most babies are getting cuddled and kissed McKayla came into this world and felt pure pain,so I can understand why she acts up when she is in pain.Anyway yesterday the sleep kicked in probably because we got the pain under control she slept from 1pm till 7pm and then was back in bed at 10pm and she is still sleeping right now and it is noon so I just slipped her meds into her so that she could keep on sleeping.This is just a small blip in the radar screen,I always remind myself what is important McKayla is here the TX was a complete sucess we have been so lucky with this little angel.It is just that I feel so bad for her my heart just breaks.What a little trooper,I didn't feel to bad when she freaked at the hospital she used to do that everytime we went there before the TX I forogt what it felt like to have my face blaring red hot.It is a good reminder to me of how much things have improved,I will never forget that.In January McKayla is going to have extensive testing done because she will be one year post Tx.Anyway I am glad she is resting I hope everyone has an awesome weekend.Jodi

Tuesday, November 30, 2004 7:20 PM CST

I still have not had time to put up the new pictures I will do that soon McKayla is out of sorts again and boy is she crabby.Thats all she can say when you look at her crabby she has also been crying alot.Tomorrow we are going to the hospital to get blood work done.She is not sleeping very well at night again.She did not go to school yesterday or today I am hoping tomorrow she will after we get back from the hospital.I wanted to let other Tx families know about a site called www.transplantbuddies.org.This is a great site with a lot of information so if you have been transplanted or are going through the process this is a great place to ask questions.When I put up the new pictures I will add the link it's just if I change one thing I have to change it all at once.Anyway I am tired and so is McKayla so hopefully she will sleep tonight,I have to work.I hope everyone has an awesome day!!!And McKayla cheers up!!! Jodi

Friday, November 26, 2004 11:37 PM CST

McKayla's week got better with everyday,her mood is really starting to settle,she did well this week at school her assistant Laurie was sick we hope she gets better soon,but McKayla did well with her subs.She said tonight that she wants to go to a movie and out for dinner,so I think it is time for another date.Jill is scanning some pictures for me so I hope to have them up here tomorrow.This is just a quick update I just wanted to let everyone know that McKayla is happy again and I even got in a long cuddle with her today,and Lastnight her Dad got a big kiss.Glad to have you back McKayla your an angel!!!I also wanted to thank everyone for the mail McKayla loves that it is so sweet.I hope everyone has an awesome weekend.Jodi

Sunday, November 21, 2004 3:40 PM CST

Good health is the most important thing in this world I remind myself of that everyday.If I only have one thing to complain about through our whole process here is one rude woman than I consider myself blessed because every other health care worker we have had have been so awesome.So McKayla continued to have a bad week she fell asleep at school on Thursday and Friday.She is very emotional we are walking on eggshells around her because the smallest thing sets her off,she is just not happy.I just want to grab her and cuddle her but she won't let me.This morning she seemed a little better until we asked her if she wanted to go out somewhere and then she started to cry.Right now she is having a snack and watching Dora the explorer.Maybe everything she has been through is finally hitting her.I am not going to worry to much Cory was a healthy kid and he had his moments too.McKayla's speech is getting so much better,it was funny today we were looking out our window and she saw a black cat and she said "lost mittens" it was funny we haven't read that book for a long time she has a remarkable memory.Well I have to go shopping now so I am going to pick her up a little surprize.I hope everyone has an awesome day! Jodi

Wednesday, November 17, 2004 9:16 PM CST

McKayla and I have had a rough two days she has been in a mood that she doesn't seem to want to snap out of.Usually this means she is comimg down with something.I can understand the anger she has been through alot in her short little life I would be angry too.Anyway we went for her EEG today and it never got done,we walked in and she said she was scared I tried everything there was a little doll there I tried to explain to her that it would not hurt her but she didn't care.I put the cap on my head she thought that was funny but it did not work.She wanted to go for a needle.I have to vent for a second,McKayla has probably had 10 EEG's in her life I have never gone to that lab and had a tech that was good with kids.If McKayla is not cooperating they are annoyed I just don't understand that.I ended up asking the lady if she liked her job and she said yes.I replied with you could have fooled me and stormed out with McKayla she was not understanding of what my child has been through and therefore we do not have to deal with her.I was thinking why can't she put herself in a child's shoes,it was just crap.Anyway we also got the results of McKayla's amino acids today they were mostly normal her Citrulline level is still somewhat elevated normal is 0-40 before transplant her level was 5400 right now it came back at 422 so great improvement there.If your Citrulline level stays elevated for long periods of time it causes brain damage.Citrulline is an amino acid not present in proteins,it is an amino acid made in the urea cycle.So we will have this done again in three months and see if it is in the normal range.I was told this level is nothing to worry about so that is great news.Thank you Tracey for the mail you sent the kids that was so nice of you,McKayla just loves that.Anyway I hope things settle down with my little princess soon.I hope everyone has an awesome day.Jodi

Monday, November 15, 2004 6:48 PM CST

So we still do not have the results of the amino acids I was hoping we would have them by now.McKayla and I went and had our blood work done on Wednesday,I still have follow up every three months.So I went for my needle first and McKayla was a big help she cleaned my arm and she was giggling the whole time.On Saturday we went to Chuckie Cheese for my little cousins birthday party and Mckayla had so much fun it was great.The last time we were at Chuckie Cheese was in New York and it was very busy,not as busy as McKayla was back then but busy.McKayla has been pretty lazy here at home lately she had her P.J's on at 5:00pm tonight she is getting alot of rest anyway.I was having trouble the last couple of days getting onto McKayla's site for some reason.On Wednesday McKayla is going to have her EEG so that is very exciting,I cannot wait to see the results of that.Other than that it seems like we have been really busy lately.School is going great McKayla just loves it although dragging her out of bed in the morning lately has been hard she is like a teenager you get her up and then you turn around and she is back in bed all covered up.I just laugh to myself it is pretty funny,she keeps us laughing all the time,she is such a character.Anyway as soon as I have some news I will report,I hope everyone has an awesome day.Jodi

Monday, November 8, 2004 11:09 PM CST

So I had to put this picture up even though McKayla is looking away and Cory is looking down trying to get McKayla to look at the camera.In this picture that is the quilt that McKayla got from the make-a-wish foundation, it is so beautiful it has her name on the bottom corner, that is also the bear she got.What wonderful things they do,they came on Saturday and measured McKayla's room they are going to try and have her room done before Christmas but they are not sure since it is such a busy time for everyone.The other day McKayla heard me say it was her 10 month anniversary so she decided she wanted to make a chocolate cake with sprinkles so that is what we did,it was fun.McKayla got some more mail today and she was so excited they were Christmas stickers,thank you.We had a bar-b-que on Saturday and it was fun McKayla likes when we have company then she can show off!(we love to show her off too!)She has recently become scared of the dark this is a knew thing another normal thing for a 7 year old yipee!We lost Elmo over the weekend we could not find him anywhere so I figured she had left him at school but when we got there know sign of the little guy.So at lunch McKayla's assistant called me and said they found him in McKayla's desk,that was a close one.Elmo,bear,and shark,go to school with McKayla everyday and they go to bed with her everynight.When we are in the car they have to sit in the seat belt or McKayla gets very upset.I am still waiting on the results of the amino acids it should be soon I can't wait to see what they are.Anyway all is well I hope everyone has an awesome day.Jodi

Friday, November 5, 2004 10:32 PM CST

It is one year ago today that I started this web page WOW!and it just so happens that McKayla is now 10 months post transplant.I just cannot believe it what a wonderful journey we have been on.Tomorrow I am doing an over haul on this site I can't wait.Cory and McKayla are both feeling better nothing to major happened.We went and got our flu shots and Kevin was a big baby,Cory and I were laughing so hard it was not even funny.McKayla went first to show everyone how it's done and then me I couldn't even feel it,Cory went next no problem.Kevin he was a different story he kept moving his arm and flinching Cory and I had tears rolling down our faces.So Kevin will never live this one down for sure we thought he was so tough.Tomorrow the make-a-wish foundation is coming to measure McKayla's room we are so excited we can't wait we will have to take before and after pictures and then put them up here.Tonight I have to go to work and then Cory has a hockey game at 7:00am so I will have to go there straight from work it is really hard getting myself turned around.Other than that all is well I can't wait to put new pictures up of McKayla she is changing so fast.I hope everyone has a great weekend! Jodi

Monday, November 1, 2004 12:04 AM CST

Happy Halloween to everyone,McKayla had so much fun,they had there Halloween party at school on Friday and right before we were leaving she decided she did not want to wear her costume.Anyway when we got to school her teacher said she saw Sparky and decided to put it on.When I picked her up she looked so tired she just had so much fun.Yesterday My niece Cassidi came over and she was dressed in a pink bunny suit she is 14 months old she looked so cute.She did not know what to think of McKayla in her giraffe costume though it was funny.Then we all went to Cory's hockey game,they lost but Cory got a goal,McKayla was calling his name from the stands it was funny.There were not many kids out on our end of town lastnight so McKayla ended up with so much candy she just loved it she was going up to the door and yelling "treat".The bad news is Cory and McKayla are both sick today,Cory has really swollen glands so I know it is not from the candy.McKayla is having stomach issues and is a little warm I just had to pick her up from school they are supposed to be getting their flu shots tomorrow.Cory will be happy though because he does not want to get his.I just hope it doesn't turn into something big for McKayla we have done so well for such a long time now.I am getting used to working I was a little tired last week,it feels good to be doing it though.Anyway I hope everyone has an awesome day.Jodi

Thursday, October 28, 2004 8:26 AM CDT

Well we have had a good week,we found out McKayla is going to have a new baby cousin,my brother Jason and his partner Sheila are going to have another baby for us to spoil so that is great news.McKayla is getting her wish from the make-a-wish foundation they are making her a dream bedroom so that is awesome after everything she has been through she will have a haven in the house.McKayla also went and had her bloodwork done yesterday so now the waiting begins on what her amino acid's come back as.I am really hoping they are good,McKayla was great at the hospital yesterday.I am so excited for Halloween McKayla is going to have a blast.I have to go for bloodwork today just to make sure my liver is still working how it should it is still follow up from surgery.I started a job after 8 years of not working this is a big adjustment for me I am working nights caring for an elderly lady,so we will see what happens my hope is to return to school next year.McKayla still cannot stop talking about Christmas either it is great it is so much fun when kids are so excited about things it is just so cute and innocent.Anyway I hope everyone has a great day!Jodi

Sunday, October 24, 2004 10:34 AM CDT

We have had a pretty quiet weekend,Cory had a 6:00am practice yesterday and he has a game tonight.McKayla is so excited for Halloween I think everyday she wakes up and wonders is today the day.Lastnight Cory was busy with his Dad so I asked McKayla if she wanted to go on a date with me,it was cute.So her and I got dressed up and went out for dinner.She wanted to put on perfume and she was so excited we have never done this before so I was so excited to.I honestly thought this was something we would never get to do together and she was so good.People were probably thinking I was crazy because I was just looking at McKayla in awe what a difference in this little girl.She has started looking through the flyers and she noticed Christmas is also coming,she wants everything in the flyer yup she is a normal little girl.We must have spent two hours lastnight picking out the things she wants.It will be so much more fun this year last year was kind of a nervous Christmas because surgery was right around the corner.I cannot believe how much better her speech gets everyday it is so awesome.Anyway I hope everyone has an awesome day.Jodi

Thursday, October 21, 2004 1:55 PM CDT

McKayla is doing awesome we are all booked for our flu shots on November 2,Cory is not a happy camper about that one.I would like to put McKayla's Hope song on the webpage the one cisn country did for her if anyone know's how to do this could you please let me know it is in MP3 format.I have to give a little plug for donating blood because some people don't think about it.Since I was very little my Mom donated blood on a regular basis and I knew when I was older I would do the same.I go every 2 months and donate,McKayla has had so many transfusions it is the least I can do.Here is a scary fact though, only 3% of the eligable population in Canada donate on a regular basis.One pint of your blood can help four people.When my Mom got cancer she recieved blood transfuions and I thought wow after all the years you donated, I bet she never thought she would need it some day.When my Uncle Jerry got sick he needed one hundred units of blood.Now between my Uncle,my Mom,and McKayla that is a whole lot of blood.I was very proud though when I was talking to a man from Canadian blood services he said Sherwood Park is one of the best places for donors.There is a clinic coming on October 30th and it is already booked Wow!If you know someone who has required blood or who has passed away you can donate in there honour and they will send the family a card,it is a wonderful gesture.Anyway it only takes one hour and it makes you fell so good,plus your not supposed to do anything strenuous for 8 hours that is a great excuse to give yourself some much needed time to relax.All you have to do is call 1-888-2-donate.I just had to write something about this it is something I am very passionate about plus with the holidays coming they always need it.I also have to say that McKayla is so pumped for Halloween it is all she can talk about it is so cute.This will be the first year she can eat all her candy because she could not eat chocolate before the transplant.Cory used to get all her chocolate and he would give her all his suckers.So this should be an awesome Halloween for McKayla,she is going to be a giraffe I think,something warm and fuzzy anyway.I hope everyone has an awesome day and for anyone driving on these slippery roads be careful.Jodi

Sunday, October 17, 2004 8:06 PM CDT

Well we have had a good couple of days,even though we have so much snow right now.On Friday McKayla and I went back to the hospital,when we were leaving she looked up at her Daddy and said "hold me" it was so cute! Anyway we saw Dr.Chan she was so impressed with McKayla she is going to a conference in the U.S to help set up criteria for Transplanting Urea cycle kids and she wanted my imput.Dr.Chan is considered an expert because three children have been done here, that blows my mind.She has decided to follow McKayla a lot closer for research reasons which I have to say I am thrilled about we have to have all this information documented for the next child who comes along. Also McKayla has had such an improvement neurologically,I just feel it is so important.Dr.Chan has decided to run an amino acid panel on McKayla to see if her citruline levels are normal this is very important because citruline causes brain damage.She said from seeing the improvement in McKayla she can't see it being high but this is great because it is a question that has not been answered yet ever and McKayla will be the one to answer it.So it takes along time to get the results back about three weeks it is a nail biter that is for sure.When we got home on Friday McKayla had mail and she was so excited thank you so much to Becky Bunny and her Mom and Dad that was so sweet of you guys.I have to brag about Cory he played the best hockey game of his life today I was so proud of him! Who needs the NHL when you can watch all these kids playing their hearts out for the love of the game.Anyway McKayla is doing great her chest is pretty swollen right now but that should go down soon.I hope everyone has an awesome day! Jodi

Wednesday, October 13, 2004 11:49 PM CDT

Today everything went very well,I firgured out today that I am so glad I was under when McKayla had her transplant I would have been a mess.It is really nice though how things are done McKayla has been put under a lot since she was a baby.When she had her broviac removed the nurse comes out and takes your baby from you and she would always scream it was like a heart wrenching scene from a movie.Of course I was upset because there was nothing I could do. After that though they started to let the parents gown up and go in with there child until they were under.Well today I took McKayla in she was so brave she walked right into the surgery suite and I lifted her on the bed,she had her little hair cap on,and these beautiful green eyes were just staring up at me so relaxed.She almost had this look in her eyes as if to say "don't worry Mommy I will be just fine"! I also saw a kind of wisdom in her eyes I had never seen before it was really neat,way to hard to describe.It took her five minutes until she was out usually it takes her about three seconds and the whole time she was just looking right at me.The moment she is out you have to leave quickly.So I had to grab Elmo,and her bear and shark and leave, and that moment you turn your back and walk away from your child a feeling washes over you of fear.Then you have a lot of time to think,and then the best moment is when they call you into to recovery and you know your little angel is o.k.We walked in there today and there were five other children in the recovery room they were all very groggy looking and some were sleeping.McKayla was the last one brought in and here is this beautiful little princess sitting on the bed eyes as wide as saucers having a popsicle and a glass of gingerale.She looked at us like oh that was nothing you guys,that kid is so funny and amazing.So right now she is sound asleep in her bed all cozy she has a one inch incision on her chest it really is nothing compared to the huge matching scars her and I have on our stomach's.I was thinking today this may be it,this may be all we have to do.We will see time will tell when you have medical issues it's always one day at a time.We have learned that everyday is a gift and I hope we can always remember to treat it as such.McKayla is my inspiration I admire her for everything she has been through and all the love and compassion she has brought out in me, our family, and so many other people.McKayla you are my hero!!!

Tuesday, October 12, 2004 10:54 AM CDT

Well I have to say we had a wonderful long weekend and the weather was so beautiful.McKayla went to a birthday party this weekend,it is so awesome how she is included it just makes me feel so good.Cory also had hockey,we had our turkey yesterday at our house.McKayla's first Thanksgiving with her new liver wow we had so much to be thankful for this year.McKayla was so excited that everyone was comimg over she had the table set two days earlier and boy she wanted some of that turkey.This was one of the best Thanksgivings we have had in a long time,even though my whole family wasn't home we just visited and laughed it was really nice.McKayla has to go to the doctor today and get a physical because tomorrow she is having her surgery to get her I-vad out.I am always a little nervous when she is put under but this is minor compared to the last two she had.Sometimes I just find this so hard to believe,McKayla is just doing so well.So tomorrow we will be at the hospital all day and if everything goes well she will come home tomortrow night I have to call the O.R today to find out what time she goes in tomorrow.I think she is pretty excited that it is coming out as well I have been talking to her about it,she always says "out,out"!I always wondered if it hurt because it is so big and right under the skin.Anyway I hope eveything goes smooth,just another step in the right direction,how did we ever get so lucky.I hope everyone has an awesome day! Jodi

Monday, October 4, 2004 11:49 PM CDT

This picture of McKayla was taken by Cory at Mount Terry Fox,what a beautiful place he was a fighter and so is McKayla.I had to give Cory credit for his beautiful photography or I will be in trouble.I really want to thank everyone for taking the time to sign the guestbook it just warms my heart to read all of the nice entries.I have to take a moment to be thankful for technology without the internet I would not have had as much support as I do.There are so many families brought together by computer wow we all help eachother it is a family on it's own.I really love this world there are so many good people in it.McKayla had a great day at school,it was so beautiful outside today I just love this weather to bad it couldn't stay this way all year.It was weird going to hockey tonight with it being so warm out.McKayla just loves watching Cory it is so cute she was so excited.McKayla was so hyper before it was a nightmare taking her there well not anymore.First things first she had to have a treat as soon as we got there,and then she sat a watched so good.I would love for McKayla to play hockey maybe in the next couple of years.I am really in my element there having three brothers who played hockey and I played ringette there were many weekends we pretty much lived in the arena.I don't know how my parents did it,I am so glad Cory loves it.So tomorrow will be McKayla's 9 months post transplant WOW! This time last year we were just starting all the testing what an amazing nine months it has been.I just look at her and my heart melts what a trooper that kid is,I just admire her strength.Anyway we have our appointments on Wednesday so I will let everyone know what happens.Please keep all the families with little ones in the hospital in your prayers because there are many.I hope everyone has a great day! Jodi

Thursday, September 30, 2004 9:07 PM CDT

Well we have a very busy month ahead of us,McKayla has a lot of appointments.The best though is I talked to her neurologist on the phone today and she said she is going to book McKayla in for an EEG and if it comes back clear they will take her off her seizure meds YIPEE!That is really exciting for us she has been on them since she was two years old.We have not seen an signs of seizure at all it just goes to show what kind of turmoil her body was really in.Her speech still improves everyday and she just loves school and her assistant which is awesome.I really need to put some new photo's up of her I did something one day and her other one deleted off here.I am not that great when it comes to doing fancey things with the computer.Cory starts hockey this weekend,McKayla is his loudest cheerleader.McKayla won't say hi to Cory at school for some reason it is funny you would think it would be the other way around.I am so excited for that I-vad to come out I think McKayla is too we were talking about that tonight.The neurologist told me today how lucky we were that things went so smoothly for McKayla she said that does not happen very often.She also said McKayla had been through way to much for it to go any other way.I am very thankful everyday,seeing McKayla at school and at home doing all the things I never thought she would do are daily reminders of how truly blessed we are.McKayla just finished her bubble bath that is her favorite thing to do,she is a true girl she has to have so many bubbles they almost reach the top of the tub.Anyway I really hope everyone has an awesome day!I will keep this updated because I think we are going to have a very interesting month.Jodi

Sunday, September 26, 2004 11:04 PM CDT

First of all I would like to thank a very special lady named Ginger,She is with a group called Bears who Care.On Friday a package came for McKayla in the mail that was filled with goodies.When McKayla came home form school and I gave it to her she was so excited her eyes just lit up like you would not believe.McKayla loves mail whe we ask her what she wants to be when she grows up she always says a mailman it is so cute.This was such a awesome gesture and it just made her day.On Wednesday McKayla and I have to go to the hospital and get blood work done and we have to pick up all the forms for her surgery and then she has to have a physical.I am really excited about her getting that I-vad out I think she is to.We are really enjoying this nice weather we have been having lately McKayla just loves being outside,by the time she comes in she is covered with dirt from head to toe.We are getting ready for Cory to start hockey again which is great it is the one thing I truly love to watch.McKayla is still doing great at school to she loves it!I hope everyone has a great day! Jodi

Tuesday, September 21, 2004 9:06 PM CDT

We have a date for McKayla to get her I-vad out it will be Oct 13,2004.I am really excited for that,other than the fact that it will be pain for McKayla.We have a lot of appointments in October so it will be interesting to see how all that goes.McKayla was sick on Friday she had a bit of a bug but she got over it very quickly.It just amazes me how strong her immune system still is even though it is suppressed.I think Cory caught it though he has been feeling sick for the last couple of days.If everyone could say some prayers there are two people in the hospital right now that I know little Savannnah she is waiting for a new liver she is sick.Also Shannon Cameron may you both get better very soon and get home.I know how hard it is to be in the hospital and when people I know are in I cannot stop thinking about them.McKayla is doing very well she has just been so good,today when she came home from school I was downstairs throwing in some laundry and McKayla was up watching a show.So I sat down on the couch down there and I thought you know I could have never done this before she would of had to come down with me or she would run out the front door or get into something.Wow what freedom we have, now that I have time to think of things with McKayla being in school,there are things I totally forgot about.It is so strange I truly have peace of mind,before my mind was racing constantly.I was always wondering is McKayla sick what more can I do to help her development, is there something I am missing.So now I am just watching this little girl improve everyday,and I have to say it is awesome.Have a great day! Jodi

Thursday, September 16, 2004 5:06 PM CDT

On Tuesday I dropped McKayla off at school,she just had these little tears coming out of her eyes and she was fine and I left.I got outside the school and I was totally overcome with emotion,so I started crying they were happy tears though I just have so much graditude for what has happened in our lives.I am so thankful I was given this chance to go through these things with McKayla there were so many times when we didn't think she would make it,yet here we are.On Wednesday and Thursday she could not get to school fast enough know tears just big smiles and she could not wait to see her teacher(Mrs.Karisse).This morning she got up, got herself ready,she wanted to pack her own lunch so I let her she did a great job,she put her lunch kit in her bag got her shoes and coat on and then she had to wait 30 minutes because it was not time to go yet.It was so awesome McKayla has always been a very independant little person and this will really help her in life.I started noticing lately for once in McKayla's life I am telling people what is right with her not all the things that are wrong with her and that is a very powerful feeling.I feel so blessed to have Cory and McKayla but I have to say it has been very nice having some time to myself lately,I had McKayla when Cory started kindergarten so it has been a long time.I think when you have these little breaks you can really give your kids 110%.Our whole family is happier and a lot more organized that is a really good feeling.Wow I really love life,I really want to thank all the people who have been so helpful to us in every area without everyone working together all these positive changes would not have taken place.Truly there are so many good people in this world.Have a great day,I know I will! Jodi

Monday, September 13, 2004 8:57 PM CDT

I have to say we had a very interesting day today,we went to the hospital to get McKayla's blood work done.McKayla and I were coming off the elevator and this little boy was with his Mom and baby brother.The little boy says to me "what is your name" and I said"Jodi" and his Mom says to me "Jodi Phelan" of course I say yes,I was wondering who is this lady.Well her and I have been e-mailing eachother for over a year now she is from Saskatoon.Her son Harrison has a Urea cycle disorder and she was getting his work up done in Toronto so I e-mailed her and said come to Edmonton it is way closer.Anyway this little guy he is 20 months old had his work up done on a Thursday and he had a liver by Sunday can you believe it !That was 7 weeks ago I had thought about them alot and was wondering how they were doing they are set to go home this week.It was just so weird how that all happened,we had never seen eachother before.I am so happy another Urea cycle kid with a new lease on life yippee!!McKayla had a bit of a strange day she started crying when we went to school after the hospital then she settled in nicely.I could not believe it but when I went to pick her up at school she gave her assistant a hug good-bye it was the cutest thing I had ever seen McKayla just loves her.McKayla has not been giving anyone hugs not even me she just has not been as cuddly since her transplant.Anyway things are really going well it is so awesome to see McKayla settling into her new life.She also got her haircut the other day by my friend Janet and it looks so cute.I hope everyone has a great day!!

Friday, September 10, 2004 12:31 AM CDT

Well we are back we went away for a couple of days to Prince Rupert,B.C.That is where Kevin was born and raised.I didn't really want to go at first because I didn't want the kids to miss school,but I am sure glad that I did.McKayla was so good the drive is 16 hrs and she was smiling the whole way.We stayed in a hotel,and then a tent,and then we went and stayed in this cabin in the mountains you can only get there by boat it is so beautiful.It was nice for our family to be together and not have any distractions like t.v or the phone,you just can't put a price on that.It was a great learning experiance for the kids to they got to see where a lot of the goods are exported out of Canada,we saw seals and porpoises in there natural habitat and that is wonderful in it's self.McKayla I have to say is such an outdoors person she was way tougher than all of us and she just loved everything.Something wonderful just happens inside you when you wake up and you see mountains all around and the sound of the ocean we all really needed this and we had a great time.When I get the pictures done I will put them up here it is just to beautiful to ever describe.When we were leaving we went into a diner and McKayla was so good there we never really took her out to eat that much before because she could not sit long enough to eat.So here she is 7 years old and totally amazed that we had a waitress her eyes were bugging out of her head.She was kind of looking like why isn't Mom gettig us the food it was so funny.At one point Kevin ducked down and McKayla grabbed his shrimp off his plate and Kevin was none the wiser it was funny. All in all it was something I think we really needed to do.It was snowing all the way from Prince George I was laughing when we were there until I got home and realized we had much the same.I hope everyone has a great weekend.Jodi

Friday, September 3, 2004 1:24 AM CDT

Well it is really late,McKayla actually fell asleep really early tonight school is making her tired which is good.I still can't believe that she is going to school what an awesome thing to happen and what a great school she is at.It is so wonderful how normal things are for us,I had four hours today to do whatever I wanted.I was going through all the pictures of McKayla to put on the site and I think I have over a thousand.When McKayla was really sick when she was little a nurse told me to take lots of pitures in the hospital and I thought that was strange.She told me though that one day I would want them because this is McKayla's story,and boy am I glad I did that.I have a lot to add over the next month.The one with her and my Dad did not work out so I don't want him to feel left out because I hope to have it up here tomorrow.It is so great how the internet brings people together I have met so many people on here and have read stories and alot of the outcomes with their children have not been as positve as ours.I just thank God for everyday we have had and will continue to have with McKayla.I read a qoute today and I want to share it,I have been thinking about it all day."Believe in miracles! Yours could be next." Goodnight Jodi

Thursday, September 2, 2004 1:07 PM CDT

Well I am sitting here and McKayla is at school WOW! Yesterday I took her and it looked hopeful but she turned around and went home.I took her back about an hour later and she stayed and was really excited.This is so wonderful,so this morning I had time to put together a little slide show with huge help from my friend Jill,thanks Jill.McKayla has her own little room at school and she likes that alot.This is a huge step for her and I am bursting with joy!Anyway I will update more later,I hope everyone enjoys pictures.I want to thank Jamie for pointing me in the right direction to get it done.I hope you all have an awesome day! Jodi

Monday, August 30, 2004 1:08 AM CDT

Big step today we got McKayla into the school and into her new classroom,I was trying really hard not to cry I was so proud of her this was such a great moment for me and everyone else there.So we were there for quite a while and then McKayla got upset and McKayla left.So Cory and I started to follow her and she went out to the park Cory and I sat on the bench and all of a sudden McKayla started running toward home Cory and I figured because she was upset.Well if they decide to film Forest Gump 2 McKayla has to star in it.She was running like the wind it was funny Cory and I could not catch up to her,she was going so fast!She past this group of boys and two minutes later Cory and I passed the boys and they said boy can she run fast.I am glad to say McKayla know's her way home from school.So Cory and I finally reach the back yard and McKayla has her shovel and pail in hand that is what she was going home to get it was so funny!Tonight McKayla and I went shopping for two hours it was so awesome she was so good I could not believe it that was always the hardest thing to do with her I would get out of any store and sweat would be dripping off my head it was awful for her and me.It was such a proud day for me to be shoppping with my little girl WOW!Thank God for the second chance he has given us.Honestly I have to say could this day really get any better.I am going to be putting something really neat up on the web site hopefully before Friday it will be awesome.I hope everyone has an awesome day! Jodi

Friday, August 27, 2004 10:55 AM CDT

We went to the hospital and everything went well,McKayla was so good.We had to go to the pharmacy and get her meds and she went up to the counter and asked for her Tacrollimus which was so cute.It is really weird but she has always been able to say the names of most of her meds.We went to the genetics office and saw Dr.Chan and she could not believe the difference in McKayla.Dr.Chan said since McKayla had her transplant it has been very quiet around there.Genetics will still see Mckayla once a year and follow her progress,I think that is great.They will have records of how everything has changed for the future.So school is just around the corner and I am just praying McKayla is going to like it this year I think if she got into the groove she would love it.I am going to buy her everything she needs and hopefully this will interest her.This is really our last hurdle getting her into school it will be a great sucess if this happens.Kevin and I had so much fun with her lastnight she is a real jokester.I don't know where she learned how to give wet willies,probably Cory but she gets us when we least suspect it and than she laughs her head off.We took her to McDonalds lastnight and we told her to tell us when she saw it well her eyes lit up and she yells "that way".It was so cute,I am going to put new pictures of her up here tonight.I just got the cd-rom fixed on my computer so I haven't really been able to do it.We are really going to enjoy our last couple days of holidays.I hope everyone has a great weekend.Jodi

Tuesday, August 24, 2004 11:11 PM

Well tomorrow is hospital day so I hope all goes well.I am writing tonight because I wanted to ask everyone to pray for a little girl named Savannah.You have probably noticed that her Mom Renee has posted on here quite a few times,they are from North Carolina.Well yesterday Savannah was put on the transplant list,Savannah has been a lot sicker than McKayla and she also has Citrullinemia.She is number one on the list where they live so this will probably happen soon.Savannah also has an older brother who is the same age as Cory,and also twin brothers who passed away from Citrullinemia.So if everyone can pray for them that they get the same miracle we were given that would be great my feeling is everything will go awesome.Also I know with McKayla I was lucky to be able to donate to her but there are a lot of babies,children, and adults waiting for organs so if you haven't signed the back of your Alberta health care card please think about doing it and also tell your family your wishes.There is such a shortage of organs,from the time I was very young I always knew I wanted to donate my organs which is odd considering the path my life took.Anyway McKayla is still wearing her Ronald Mcdonald wig we cannot get her to take it off we went to the store today and this lady had a huge smile on her face when she saw McKayla.So McKayla made one lady smile today I will not bug her anymore to take it off,they will get a kick out of it at the hospital tomorrow for sure.McKayla and I are going to stop by the genetics office also we have not seen those guys in so long.So I hope everyone has an awesome day!Jodi

Friday, August 20, 2004 10:59 AM CDT

McKayla has just been so good she just loves loading and unloading the dishwasher.On Wednesday night I went and bought her a package of paints and I told her it was for helping me all the time,well I have to say incentives work for her because she was a busy bee yesterday.She folded all her clothes and put them in her dresser and then she helped me do mine.I have to say she can fold better than me she really pays attention to detail.Then she helped me clean the basement it was so much fun,if cleaning can be fun.We have talked about school and I am not getting a very positive response so we will see what happens.She spends most of her time drawing,painting or writing on her chalkboard she can spend hours at a time doing this.So my fear of her sitting at a desk is gone.I think if she went she would really enjoy it and I don't think she would be disruptive at all in a classroom setting which is awesome.She also has straws she plays with on the floor and I ask her what she is doing and she tells me she is spelling and she showed me a T.I was so impressed I know that she has retained everything that she has learned.Her speech keeps improving she really does not use any connecting words yet though but that will come.All day yesterday she was wearing her wig from when she was Ronald McDonald for halloween so I kept on asking her where she got her hair done and she was going "wig" I think she was getting mad at me.Also she dug a worm out of the garden and he is her new best friend she just loves him,she has him in a jar with dirt and grass.My friend Jill named him Herman for Mckayla she is very happy with this little guy.McKayla loves everything to do with nature she must get this from her Dad.Anyway things could not be any better right now,I still don't have a surgery date I am waiting for a call still.I hope everyone has an awesome weekend!Jodi

Wednesday, August 18, 2004 1:36 PM CDT

Well we had an interesting weekend we spent most of it on the boat looking for our motor Kevin is very determined to find it.We had fun looking for it though no luck yet.Kevin went and rented snorkel equipment to find it and my brother Jason did most of the diving.So on the Sunday McKayla,Kevin,our dog Minnie-me and myself were out on the water looking for it and McKayla decided to throw the snorkel off the boat.Well Kevin had put a $50 deposit on the snorkel so he tells me to jump and grab it so I did.Well when I hit the water I lost my bearings and screamed I am drowning help.Kevin and McKayla were on the boat and they were both laughing at me because I had my life jacket on.Which I always do because I am scared of water,after a boating accident I was in when I was 19 and yes Kevin was driving the boat that day too.Anyway I am in the water panicing and our dog jumps off the boat to save me it was pretty funny,since she is smaller than a cat and hates the water.Kevin is still bugging me about this,anyway to say the least it was interesting.McKayla is doing so well this is the first summer that I have not gone away for a couples days by myself I don't feel like I need the break anymore.Also I am looking for a job which I am also very excited about Wow has our life changed I love it.Jodi

Friday, August 13, 2004 8:30 AM CDT

So we went to the hospital on Wednesday,and McKayla was really good right until the nurse went to stick the needle in her I-vad and McKayla at the last minute kicked it out of her hand what a little stinker.We have not heard yet when her surrgery will be but I am really hoping before September.Yesterday it was so cute Cory and Alyssa were playing out in the field behind our house and I said to McKayla go play with them.This would have never happened before because when McKayla would go in the field she looked for an opening and ran as fast as she could she did not care where she was going she was just going somewhere.So she went up and stayed right by them it was awesome.It just gives me such a good feeling to see her doing this stuff.Also lastnight she hung out with Cory in the front yard which would have never happened either because she would have ran directly to the Macs store,we really have so many new found freedoms it's great.Yes I still think McKayla will have a future as an olmpic runner in some form or another cause that girl can run.Another new thing is McKayla is really drawing pictures now yesterday on her chalkboard she drew a sun with a smilimg face on it and Kevin and I were so excited she just kept on drawing more she is a little artist she spends alot of her time drawing and now it is not just sribbles.I also figured something out that kind of amazes me since the surgery I cannot feel the majority of the skin of my stomach there is know feeling at all,because we actually have tons of nerve endings in our stomach the surgeons told me this would probably never come back.So I started an excercise program the pants are getting a little tight and I realized I cannot feel any of the muscles in my stomach at all either.This is really great because when I do cruches I cannot feel the burn so I figure I should have a six pack in a couple of months Ha!Ha! Things are going well though the motor to our boat flew off in the lake so we have to go and try and find it tomorrow Cory and Kevin were ready to cry but at least it was just a motor and not a person.McKayla will be happy with that though it means she gets to go to the beach.Anyway I hope everyone enjoys what promises to be a beautiful weekend.Jodi

Tuesday, August 10, 2004 8:09 PM CDT

Well good news today My gentle pushing worked and I am waiting for a surgery date to get McKayla's I-vad out so that is great.My friend Renee put in the guestbook to use emla but since McKayla was about 2 years old she developed an allergic reaction to it.For anyone who does not know emla numbs the site so that the kids cannot feel anything.We had a very good weekend we went to My Aunt and Uncle's 25th anniversary and it was fun.When we got there though McKayla was a little confused because there were trailers everywhere and she figured she was staying in one.She was pretty active when we were there but there was a lot going on.It is nice that the weather is warming up it was starting to feel like fall already.Kevin is sick right now so I hope that he does not pass anything on to McKayla.Tomorrow we go to the hospital McKayla needs to have her bloodwork and her I-vad flushed otherwise she is doing awesome and has beeen helping me around the house a lot I hope everyone has an awesome day.Jodi

Wednesday, August 4, 2004 10:19 PM CDT

Well it seems like forever ago that I was on this computer we have had a very busy last couple of days.My Grandpa's funeral was nice and it is always good to see my family I wish though that it was under different circumstances.I stayed at the lake on Friday with my Grandma and McKayla was not to impressed when I got home.On Monday we went to my nieces first birthday party and McKayla was very excited to go and she was so good we were there for a good 8 hours.I was so proud of her it just amazes me how much calmer she is now, I love every minute of it.Yesterday we went to the beach for most of the day she truly enjoys it there, she just loves the sand.Right now she is missing her two front teeth and two bottom teeth she looks so cute and grown up.I am trying to get her to answer the phone she did it once when my Auntie Gloria phoned,she said "hello" and then she called me "Mommy" and I asked her who it was and she said "Gloria".I was so impressed because she knew who it was.Before the transplant she always called me Mama and now she calls me Mommy everytime I hear it it sends chills down my spine.It is really hard to believe that tomorrow it will be 7 months since the transplant,we have been so lucky with McKayla she has done so well.It is still hard for me to believe this all happened I guess it always will be.Thank the lord for miracles.I am really nervous for September to roll around because I don't think McKayla will change her mind about school at all but we will see.I am pushing for the I-vad to come out so I hope to have some news on that soon normally I don't like to do that because I don't want it to jinx us.I am just thinking that if we get her rolling well in school and then she has to have surgery and be away for a while it will not benefit anyone.So I would really like this done soon.Well I cannot complain at all right now my family for this moment is safe and sound and healthy so I hope that continues.I hope everyone has an awesome day.Jodi

Thursday, July 29, 2004 9:13 AM CDT

Things have gone well for McKayla the last couple of days she has been falling a sleep at about 11pm,so that is getting better I hope that we can get it a little earlier.She has been extra happy so that is really good,she really likes to tease us.Yesterday we went to the hospital I thought it was going to be a nightmare because we were going to the lab she loves the people at the lab but her pain tolerance does not seem as high as it used to be.When we first pulled up to the hospital she started screaming because we had to go to the Tx clinic to get a req.Anyway she stopped crying and she went up to the receptionist and asked for the req and then carried it to the lab.Of course we passed a little concession and I got bamboozled into buying her cheezies and smarties,McKayla knows how to work it.When we got to the lab they took her right away and of course she was showered with attention.McKayla got up into the chair herself and sat down and got her bloodwork done with not so much as a peep.She got a whole handful of stickers and a bandaid for her and Elmo and we were on our way I was so proud of her,so I was making a big deal about it and she had this little smirk on her face it was so cute.I have to say it was way less traumatic then getting it done out of her I-vad I think I will push a little bit to get it out sooner.I don't really like doing that in case something does happen and she needs it but if we get it out I think it will really help McKayla.When we go next time we have to go to the 5th floor because the I-vad has to be flushed once a month.Anyway we have a very busy weekend ahead of us.My Grandpa's funeral is tomorrow in Sylvan Lake and then my niece Cassidi is celebrating her first birthday so I hope McKayla won't be scared to go to her party!Anyway I hope everyone has a safe and healthy long weekend.Jodi

Monday, July 26, 2004 10:59 AM CDT

Well we have had a long week,McKayla had to go to the doctor she has a lump in her arm they may have to ultra sound it to make sure it is nothing.She was really good this time she had to take Elmo's blood pressure when we were there it was really cute.Her sleep has not been that great lately she has had a couple nights where she stayed up all night.Anyway other than that she is doing well I have to say her hair is looking great I just love it I will have to put up a picture without her hat on.We are trying to decide what we are going to do for holidays this year,it will be nice for us to get away, on Saturday my Grandpa died.I am really praying that my Grandma can get through this all o.k. It had been kind of a crazy month.You just never know when the phone is going to ring and you get bad news.Anyway I am very glad that McKayla's health has been good because it makes it easier to deal with all this other stuff that is going on.We went boating yesterday and it was fun Cory water skied and he got up in four tries Kevin was so proud of him I thought he was going to burst.It has been nice to go because it is so relaxing and it is something we all enjoy and can do as a family.All McKayla really cares about is the cooler and what kind of food is in it, it is funny.Anyway I think we are going to have a long week.I hope everyone has a safe,happy,healthy week!Jodi

Tuesday, July 20, 2004 12:24 AM CDT

Well we have had a busy last couple of days,McKayla's emotions are all over the place she gets upset really easy.Friday was her last day on the steroids so I guess it takes a couple of weeks 3 I was told for her moods to level out poor kid.I was told by another parent though when they have been off the steroids for a while you notice a huge difference in them.McKayla stayed up until 5 am lastnight wow that is a little to late.I got a call from the hospital yesterday and they want McKayla to have blood taken out of her arm a couple of times before they will remove the I-vad so I guess it will be a while before that comes out.we had my Dads' 60th birthday on Saturday and McKayla came she was really shy at first and then started visiting a bit.She did get upset there though,anyway I hope things level out for her.We have a little girl who moved onto our street she is also 7 she had a kidney transplant 2 years ago and she will be going to the same school as McKayla so that is pretty neat.I realize how lucky we are everyone we talk to has had so many more complications than we have.So I count my lucky stars! We went boating on Sunday McKayla just loved that it was great to get out and do something as a family one of Kevin's new toys.Anyway things are well I hope everyone has a great day! Jodi

Thursday, July 15, 2004 8:59 AM CDT

Well yesterday we went to the hospital and McKayla had a little bit of a melt down when we got there.The needle they put into her I-vad is the size of a thumb tac so you can imagine how much that hurts.Once the needle was in she was fine and when it comes out she likes to clean up the blood herself and put on the band-aid.I have called the doctor about getting the I-vad out she will have to have surgery for that so I am hoping to have it done before school starts again.I should hear something this week about that,it really has not caused much trouble but McKayla did fall on it once.It is just a big bump sticking out of her chest and for anyone with a weak stomach it is hard to look at.I guess they don't cause much pain but they can pull on your chest muscles,which does not sound to comfortable to me.The rest of our day was really good yesterday,McKayla and I had a little picnic outside and we played in the pool.She is doing very well with her counting and I can tell how proud of herself she is.The funny thing is she hates the wind so if we are outside and it's windy she gets really mad,and starts yelling.Friday will be her last day on the steroids so it will be interesting to see what happens when she comes off them.Anyway we are enjoying the nice weather I hope everyone else is too! Jodi

Tuesday, July 13, 2004 1:02 AM

It is late and I cannot sleep sometimes my mind just races I have so many things going through it.Tonight McKayla was so cute she was trying to ride her bike without training wheels and she kept on falling off.I don't think that I have ever met a more determined child.She really takes the saying to heart if you fall down just get back up and keep trying.She tried all night to ride that bike,and then when she got really tired she wanted to bring the bike in the house with her so we had to explain that her bike had to sleep outside tonight.Her new thing is to tell us to stop talking it is quite funny.I was pondering tonight how events in our lives change the path we are on.When I was younger I always pictured myself being a career woman,and it is funny how events change our hopes and dreams.I never regret anything in my life and I feel like I am onto the path of something big in my life.We have gone through many things and I see people around me getting married and divorced, graduating from school,people dying,and new babies being born.All these things change a persons life forever.These events change who we are make us stronger people,even the little things.I think after all this with McKayla I have so much deeper meaning in my life.I think of things I would have never thought of before.Like wouldn't my life be boring if I had a 9-5 job and two perfect children.Not trying to put anyone one down who has two perfect children and a 9-5.People always say to us how do you guys do it you have been through so much.Really though the truth of it is we have been given so much.Seeing McKayla trying to ride that bike tonight was one of the most special things I have seen.I was looking at her in complete awe,and thinking that is the strongest and bravest person I know in this world and she is 7. For some reason we were chosen to take this wild but exciting road and I wonder what we would be like if McKayla had been born perfectly healthy.Now of course I don't have an answer to that,but I know one thing and that is McKayla has really made us into the people we are.I don't even know if I am making any sense it is late but these are my sometimes to honest thoughts for tonight.I hope everyone has a rainbow day!!! Jodi

Sunday, July 11, 2004 12:09 AM CDT

Well we have had a long week,McKayla is doing awesome she lost another tooth and Cory thinks she looks like a hockey player.As soon as the tooth came out of her mouth she said "money" it is funny how kids catch on so quickly.McKayla has been very lazy lately I think because of all the rain she has not really felt like going anywhere.Her speech is still coming along so nicely she looks so grown up.I took her to the doctor on Thursday because she had a bit of a bug but I think that has cleared up now.I was also getting concerned because she is so skinny I can fit my fingers around the top of her arm.The doctor said she is fine though she has lost 10lbs since the transplant he said she is just getting so tall.I don't know where all the food goes that she eats because she eats constantly.I have to say I am so proud to be a part of the Phelan family on Friday it was my Uncle Jerry's funeral and I have to say there could not have been a better send off for him.It's amazing how families can just come together and do what has to be done.Anyway things are going well right now and I hope that continues.I hope everyone has an awesome day.Jodi

Monday, July 5, 2004 10:56 PM CDT

Today I write this journal entry with a heavy heart,as we celebrate McKayla's six month milestone of her Liver transplant,we grieve the loss of my Uncle who lost his battle today with liver disease.Jerry Phelan a 53 year old retired police officer my Dad's younger brother will now get the peace he so deserves.I look back today on the last six months and I thank God because I know how precious life is I am glad McKayla was given the chance to live.Our life has changed so much thanks to the wonderful Surgeons and Doctors that we have here in Edmonton.McKayla before her transplant was hyper-active her movements had no meaning she just had to move.We could never reason with her,she was always into to something and never feared anything.Her balance was so poor she would fall at least 20 times a day.She was on a strict diet and disgusting formula,I was worried all the time.We feared she would go into a coma and not wake up,you never knew from one hour to the next if you would be rushing her to the hospital.The seizures she used to have were very hard to watch,and we would never know when they would show up.McKayla and our family have been freed from a disease that had a hold on our life,I always tried to maintain a positive attitude but there were times when I felt beaten down.Today I feel joy for my child she has a chance,we all have a chance at a normal life I would not trade these last 6 months for anything In this world.I know we are all here for a reason and wether we know it or not we touch people in ways that can affect there lives forever.I think of the surgeons, they may have already forgotten our names but when I am 92 I will still be able to tell everyone who saved my daughters life.Sometimes it is just simple things,small things that can have a big immpact on people like smiling at someone at the store or calling an old friend and saying hi.McKayla is here for a reason,a bigger reason I think that extends beyond our family.It is really remarkable to me that a person can meet McKayla once and they always remember her.I am thankful for everyday of life she is able to live and as a healthy person.Things for her have just gotten better everday,we have gone forward and I don't want to look back anymore I want to celebrate this chance we have been given.I say today kudos to my daughter McKayla for all she has been through and the many great things she has to experiance.The strength and determination I have seen in those beautiful green eyes will give me enough inspiration to last a lifetime.I wish peace to my Uncle Jerry who died too soon he is with the angels now. Goodnight everyone.Jodi

Friday, July 2, 2004 11:28 AM CDT

I hope everyone had a good Canada day! We did McKayla got her new pool and she does not want to come out of it now which is good because swimming is one of her favorite things to do.She is getting way better at going to places we went to my cousin Jackie's yesterday and McKayla was very happy to be there.They have a big pool in there back yard and she had her life jacket on but she started to panic when she went in and started screaming HELP! It was cute after that she was fine.Lastnight we were at my neighbors to watch the fireworks and she did not like them at all they scared her I don't think she really likes loud noises unless it is her own voice or her Dad's!It is really neat to be able to ask her to go and do things though because before that was not even an option.I would always think McKayla can't come because she was way to hyper and it was not fair to her or me.That has all changed though,and boy is that a great feeling.Things are just going so well for her I love it.My Uncle is still very sick,the doc's are not giving him much of a chance he is only 53 years old so if everyone could just send him a prayer I know my Dad and his brothers and sisters are with him every moment.His kidneys and liver are failing,I wish them all strength to get through this.I hope everyone has a great weekend! Jodi

Wednesday, June 30, 2004 12:18 AM CDT

Well I need to vent today I am mad today Cory,McKayla and I went to the hospital everything went great.Until we stepped on the elevator McKayla went bounding in there full of smiles just because her needle was over with and we were leaving.Well there was this old man on there and he says to her "pipe down kid your not at home" really I wanted to slap his face but I didn't.I was so mad my heart started beating fast and I was shaking.So instead I said "oh the enrgy of youth something I guess you have forgotten all about"! I was mad what gives a person the right to comment on what another person is doing.I am always having people saying one thing or another and I just do not see where they get off.I would never dream of saying something to anyone about there actions.I really have noticed that the younger generation is so much more tolerant of people and that is something we can all be proud of.Anyway what can you do I was so flustered that I forgot to pick up McKayla's meds so now I am going back to the U of A.Otherwise things are well Mckayla and Cory and I are going to buy them a new pool right now.I know alot worse things could happen but sometimes I have to vent about the little things.I hope everyone has an awesome day! Jodi

Monday, June 28, 2004 8:42 AM CDT

We have had a very good couple of days with McKayla,she has been talking about the movie steady.On Friday night I convinced her to go to my Dad's house and she stayed for a little while that was good.On Saturday I was having a baby shower for my new little cousin at my Dad's house and McKayla stayed there with me all day.It was nice to have her with me at an event because before she would have been into everything and it was always stressful on everyone.She was so cute she sat nice and then she was helping me clean up and everything I was so proud of her.She looks so cute with her front tooth missing.Today McKayla and I have to go and pick Cory up at the airport so we are both very excited about that I miss the little guy so much.I guess they had a really awesome time in Vermont so that is great.Things are going really well and McKayla is talking like crazy, more words everyday.She has just been so good and calm this is just great.Anyway I hope everyone enjoys the sunshine! Jodi

Thursday, June 24, 2004 11:32 AM CDT

Well I have to say I could not be more thrilled today!Lastnight McKayla and I went to a movie Shrek 2 this is so exciting if someone would have told me we would have been doing this 6 months ago I would never have believed it.We got to the movie theatre and she was beaming,she gave me a thumbs up and was like "stop movie park".Anyway we get inside and she is prancing around I was so proud of her there is disco lights in there so she started dancing it was so cute.We went and got the treats and went in and she put her drink and fries in the cup holder and put her feet up.I was thinking o.k if at anytime she gets up we will just go but she sat through the whole movie.I am so happy right I cannot believe we actually did this it is like WOW!! I had to call my whole family and tell them they could not believe it.I called Cory on my brother Aaron's cell phone and Cory was all excited to,they are on there way to Boston to see a baseball game they have box seats.McKayla also lost her front tooth lastnight so right now she looks like a hockey player the tooth fairy had to come.So I had to share that with everyone I still can't believe it this is great.I hope everyone has an awesome day I know I will! Jodi

Monday, June 21, 2004 10:27 AM CDT

Well I have to say that we have had a very busy weekend.Kevin and I laid new floor in our kitchen and living room.McKayla was so good and helpful,we would have never been able to do this before but she was right into it, it was so cute. She is still not sleeping properly so we will see what happens there.Cory left for Vermont yesterday and my Dad could not go because his brother is very sick.So Cory flew from here to Montreal by himself I have to say it was very nerve wracking for me.Kenny and Aaron my brothers met him in Montreal and he did just fine so I am sure he will have an awesome week.McKayla and I are on our own all week Kevin is gone out of town so I guess it we be fun just the girls.McKayla's teeth are still loose very loose she won't let me help her pull them out so I am hoping they do not fall out in her sleep.She is doing very well though I have noticed a difference in her mood since starting to cut back on the steroids.Her teacher came on friday and McKayla was very excited.I want to thank everyone from Jean Vanier for all the nice gifts.Also the parents in kindergarten made a special page in the yearbook for McKayla that was os nice of them.So things are going well and McKayla just gets better everyday.Everyday that I wake up I just thank God that things have gone so well for us we are so lucky.I hope everyone has an awesome day! Jodi

Wednesday, June 16, 2004 11:03 PM CDT

Well we have had a very exciting day,We went and saw Dr.Jones and he cut back McKayla's meds.We also ran into McKayla's neurologist there and she could not believe her eyes when she saw McKayla she could not believe how good her balance was she said McKayla looked like a different kid.She had a huge smile on her face it was awesome!McKayla would not get herself weighed and measured though she said she was scared so we did not force her.Elmo also came to the Doctor's with us and had a check up I am happy to report that Elmo is very healthy!So we are taking McKayla off the steroids it will take one month until she is off them completely.This is very exciting becasue they cause severe mood swings(which we oftern refer to as roid rage)and they stunt your growth,and affect your sleep.So we will see what happens becasue McKayla has still grown so much.He also cut back her anti-rejectin drugs and her iron.Another excting tidbit is we only have to go to the hospital every two weeks providing McKayla's blood work stays normal which is GREAT!!!!McKayla was so good with Dr.Jones today he asked her to open her mouth and she did I think he almost fell on the floor I know I almost did.McKayla is very comfortable with him he knows that you cannot make her do what she does not want to do or you know it.I don't know where she gets that from! We have to get her sleeping under control she did good for two nights and then she has been up until 3am I am so tired it is not even funny.So we are going to give her something for 7 nights and see what happens the doc thinks we have to get this under control and I agree whole heartedly.I had to wake her at 8am today and boy did she look tired.It is funny what lack of sleep does to your body,McKayla is still up right now we are not starting until tomorrow night so I am praying she will go to sleep soon before my head hits this keyboard.This is such a minor problem though.Life is great I am so happy about this, now really could this day get any better!!!!!! I hope everyone has an awesome day I know I will! Jodi

Wednesday, June 16, 2004 11:59 AM CDT

So McKayla and Cory had a flu,McKayla was up most of the night on Sunday and Monday she still seems a little bit tired.I am amazed though that she has only picked up the things that Cory has gotten.We went to the hospital this morning and she was a little angel.She always rides in the wheel chair because it is very far to walk.We were on the elevator and this little girl says"why is she in that wheel chair" and her Mother looked mortified.So I told the little girl why and said to her it is always better to ask then to stare and she had a big grin on her face.As adults we lose that innocence,I much rather even an adult ask.We are proud to tell what we have been through.This afternoon we will be seeing Dr.Jones so it should be an interesting day.I cannot wait to see what he has to say and if McKayla can come off some of these meds that she is on.McKayla now has three loose teeth so it will look funny when they all fall out.Otherwise she seems to be doing well.I am thankful for everyday of health that we have!I hope everyone has an awesome day! Jodi

Sunday, June 13, 2004 10:39 PM CDT

Well we have had a very good weekend,McKayla was very helpful around the house and Kevin and I actually went out by ourselves.Jason babysat for us on Saturday night and we went to the Shania Twain concert.Then today McKayla and I planted some flowers and she loved that it was very messy.We tried to get her to go to her kindergarten pinic but there was know way she was going anywhere.Tonight she helped me make supper it was so cute and she was very proud of herself she is really growing up I love this I was so proud of her.Also another big thing she actually sat down with us at supper tonight,and that has not happened in a long time.She is barely spending anytime on the couch.So things are going in the right direction that is for sure.She has a couple of appointments this week so it will be interesting to see what the doctors have to say.My Uncle Jerry is still in the hospital and very sick so if everyone can just keep him in their prayers that would be great.I hope everyone has an awesome day! Jodi

Thursday, June 10, 2004 12:45 AM CDT

McKayla had a great day yesterday we went to the hospital same ole routine.When we were leaving we walk past the bearyland store and McKayla saw an Elmo doll in the window and had to go in.So she picks up this doll and starts dancing around with him she was singing "Elmo,Elmo" it was so cute.So I said o.k you can get him then I looked at the price tag $30 I was shocked but there was know way that Elmo was staying at the store so he has a new home here and McKayla could not be more pleased.Most expensive little doll I ever bought but he made McKayla very happy yesterday he even had to sit in a seatbelt on the way home.She looks so good these days she still has a lot of bruises on her but I am sure once she comes off the blood thinners that will go away.Her spirits are way up though and that is good to see.I think she is driving Cory a little crazy though so he will enjoy his trip to Vermont a little time away from it all.Could everyone say a little prayer for my Uncle Jerry he is in the hospital.I hope everyone has a great day! Jodi

Tuesday, June 8, 2004 9:00 PM CDT

Well I have to say we had a great day today,McKayla went to bed earlier and she got up earlier which is a step in the right direction.McKayla also has a loose tooth which is very exciting.We had a visit today from McKayla's new assistant Mrs.Karisse and I think McKayla really liked that. Mrs.Karisse brought McKayla a little present which made McKayla happy instantly that was a very smart thing to do.So when Mrs.Karisse left I told McKayla that she was very lucky that her teacher brought her a present and that she was really nice and McKayla had a big grin on her face.I think this just may work out,McKayla was very good when she was here and was not distressed at all so we will see what happens.I have to say though I am feeling much better about the whole situation.Tomorrow is hospital day,so I hope it all goes well.It should because McKayla was in a great mood all day today! I hope everyone has an awesome day! Jodi

Tuesday, June 8, 2004 1:26 AM CDT

You know I wrote my last journal entry and then I went downstairs and I listened to the songs from the radio-thon that is what I do when I feel down at all, but it is like listening to someone elses story.Somehow they always pick me up and make me feel better and stronger.So I started thinking for the last seven years we have lived from one crisis to the next it has been constant McKayla's illness my Mom's illness and death,helping my Dad cope with my Mom's death.I don't know if I have even fully realized the impact of this on my own life she was the person I was closest to in this world and now she is gone.People always say time will make it better but from my own experiance I can say that is not true you just get used to the pain of them being gone.And then our Victory the liver tranpslant,but now that the crisis seems to have ended the last seven years of life are starting to sink in I have time to sit and think about what we have all been through.Being strong and postive is very important,and that is what I always try to be but I also think that part of being a strong person is letting yourself be weak at times and to take a look at everything that has happened.I was told on more than one occasion that my child may die,I was told my child would just become more brain damaged everyday until she was brain dead.I was told my child would never learn like anyone else.Kevin and I dealt with dumb off handed comments all the time from people who just didn't get it! Comments about McKayla's development,when I just wanted to say this child being here at all is a miracle who gives a crap if she can't tie her shoes!So as I was thinking of all this it came to me, in my last journal entry I was saying how scared McKayla is I would be to if I were her, the world is like a new place.It may all be sinking into her head everything she has been through and maybe she is nervous she is going to get sick again and that is why she feels comfortable only at home and the hospital because these are the two places she has been sick at but she has also been healed at!Our physical scars have healed but I think it is really important to start healing emotionally for our whole family.I was really lucky to have a good strong support system and most of all a wonderful family.A sick child effects every area of your life,for 7 years we have lived on one income when this is a two income world.Kevin and I were told that the chances of a relationship lasting a child with a Urea cycle disorder were %10.My son Cory has had to sacrafice time and time again.We win though we have succeeded in all these area's and now we all have to heal as a family we have outlasted everything.The transplant was not the only sucess we have to be proud of we as a family held strong together even though the odds were stacked against us.I guess I just had to validate all of that it is important.To all the people around me who send me encouraging messages these are what also make me stronger when I do have weak days I read those.I have saved many heart warming e-mails that pick me up on the days I don't feel as strong.I am so thankful for having this website to share my feelings I have learned alot about myself and I try to be as open as possible.I also thank the many people who care enough to come on here and see how we are doing it is great how healing this is. Jodi

Monday, June 7, 2004 11:26 PM CDT

I am feeling very overwhelmed today McKayla and I had to do some running around today and she was really freaked out.We went downtown and she was fine but as soon as we entered a building she went crazy crying and screaming.She said she was scared and wanted to go home.Then we had to go to the bank and it was the same thing she would not go into the bank and she got really distressed.I really wish that I could get to the bottom of this fear of places she was really scared I felt so sorry for her.She has been more active in our house so that is a good thing she is not just sticking to one room anymore.I am just not sure how I can get her to experiance new things if she is always scared.Before she had the transplant she was fearless and that was not a good thing.So I guess only time will tell,I rack my brain all the time trying to think of things I could do to help her,but I think I am just driving myself crazy.At home she is happy and content,but she is staying up really late and sleeping in really late so slowly I am going to try and change that as well.I am a morning person so even if I stay up late I am up early.so I am kind of tired these last couple of days.Kevin was out of town all last week and all this week so it will be nice when he is here at night again.We are having one of the assistants come from the school tomorrow I guess if McKayla won't go to school we can bring the school to her.Anyway we will see how that goes as well.I hope everyone has a great day! Jodi

Sunday, June 6, 2004 4:32 PM CDT

So I finally got some new pictures up and I hope to put more soon.We did end up going to the zoo on Friday but it took me 3 hours to convince McKayla I showed her a book about the zoo and everything and then I told her we were going to McDonalds and she got in the car.We saw her class there and the kids were so excited to see McKayla it was so cute.I made the big mistake of showing McKayla the ducks first and then that is all she wanted to see.She did not care for anything else at all.I thought the elephants would peak her interest but no!So after we left her class she sat on the boat and just watched the ducks for an hour and then we went home she was getting over heated.I had to keep her covered up because her skin is much more sensitive to the sun now and she is at a greater risk for cancer since she had the transplant.I was so glad though that we at least got there,when we first arrived there was a big line up and McKayla stood beside me and held my hand I was shocked she has never done that before.We have had a really good weekend and I hope that I can get her to the park this week I am just going to keep on trying everyday.I hope everyone has an awesome day! Jodi

Thursday,June 3, 2004 11:36 PM

McKayla loved her paints so much that she painted all day yesterday and we had pictures hung up all over the fridge.She was so proud of herself she was not even that messy.Today I tried to get her to go to the park but we were on our way there and she caught onto where we were going so back home we went.Tonight she said she does not want to go to the zoo but I am going to try everything to get her there I think once she is there she will really enjoy it.I am going to put new pictures of her on here tomorrow,it is about time.Tonight McKayla looked like a little old lady she had a hat on that was way to small, and a cute little dress that was to short,she also had some gold beads around her neck it was so funny Cory and I could not stop laughing.The greatest thing about today though was she was drawing on her chalkboard and she did an "M" all by herself,I was so proud of her.There is so much locked up in that brain of hers and if it is the last thing I do I will get it flowing.I think McKayla has retained everything that she has learned since she was little we just have to figure out how to get it out.She was in her first speech class when she was 18 months and has had some kind of instruction or another since then.I was watching her today like I do often and she was in the kitchen I gave her a butter knife because she likes to chop her banana's and she was so steady I could not believe it.Her hands would have never been like that before she would have been chopping all over the place.I can just see how much control she has over her movements now.I watch her walk and it just amazes me she is just like any other seven year old.When I see all these remarkable improvements in her I wonder what kind of nightmare she was living in before.She used to have these attacks,where she could not hold her head up it was like those little dolls that somersault,there head is way heavier than there bodies.Well she would have these and still try and walk and we would have to try and keep her from moving around it was one of the worst things I ever saw the longest attack lasted for three days and the doctors could not explain.She would be falling and it was like she was highly intoxicated they were just awful.Now she looks like she could walk a tight rope.This transplant has given us all a new and better life in so many ways I love it! Almost everynight Cory says "Mom isn't cool McKayla is almost like any other kid"!I love that! Cory is so much happier to I can see a big change in him.My Dad and Cory are going to Vermont at the end of the month there annual trip to see my Brother Aaron and his wife Erin and my niece Maya.My brother Ken is also going to meet them there so Cory will have an awesome time he has some great role models.I am hoping to go later in the summer I miss them so much! Anyway enough of my rambling.I hope everyone has an awesome Friday I hope I am going to be at the zoo if I can get my daughter into the car ! Jodi

Wednesday, June 2, 2004 1:30 PM CDT

So we went to the hospital this morning and McKayla was good she did scream when she got her needle though but the nurse we had was a complete master I have never seen it done so fast before.I talked to Tyler's Mom the other night and Tyler just spent another 3 weeks in the hosptial he had a hole in his diaphram.He was very sick,boy I hope they do not have anymore problems.He will not be returning to school this year either,he is in grade six.McKayla and I went to the store today and bought her some paints and things for her to do at home she loves them.She was so good at the store this morning she was walking around humming.Then she tried on a pair of sun glasses and she was strutting around saying cool!It was so much fun I really enjoyed it,I was really impressed with her.She also picked out some clips for her hair.It is so great now that she has some!We are going to go to the zoo on Friday we are meeting her class there she is excited I was telling her what we would see.We have taken her before in previous years but she couldn't sit still long enough to look at anything.Everyone there has worked so hard at the school to make McKayla feel comfortable so it will be nice if she has a fun day with them.It is amazing how much work goes into one special needs child I am thankful for everyone involved.Anyway I hope everyone has a great day!!!!Jodi

Wednesday, June 2, 2004 1:30 PM CDT

So we went to the hospital this morning and McKayla was good she did scream when she got her needle though but the nurse we had was a complete master I have never seen it done so fast before.I talked to Tyler's Mom the other night and Tyler just spent another 3 weeks in the hosptial he had a hole in his diaphram.He was very sick,boy I hope they do not have anymore problems.He will not be returning to school this year either,he is in grade six.McKayla and I went to the store today and bought her some paints and things for her to do at home she loves them.She was so good at the store this morning she was walking around humming.Then she tried on a pair of sun glasses and she was strutting around saying cool!It was so much fun I really enjoyed it,I was really impressed with her.She also picked out some clips for her hair.It is so great now that she has some!We are going to go to the zoo on Friday we are meeting her class there she is excited I was telling her what we would see.We have taken her before in previous years but she couldn't sit still long enough to look at anything.Everyone there has worked so hard at the school to make McKayla feel comfortable so it will be nice if she has a fun day with them.It is amazing how much work goes into one special needs child I am thankful for everyone involved.Anyway I hope everyone has a great day!!!!Jodi

Monday, May 31, 2004 6:38 PM CDT

So I guess we have decided to not push the school thing on McKayla.I know that it was very emotionally draining on everybody involved.I am going to try and get her to the school park everyday.Sometimes there is no way she is leaving the house.School for kindergarten ends soon June 16 so really even if we get her going then there will be a two month break and I think we will be back at square one.I think within the next couple of months we will see alot more change and maturing in McKayla if she has improved this much in this short period of time who knows what three months will bring.I have really high hopes for McKayla, she is such a special little girl sometimes I just stare at her and think child you are my inspiration.I used to joke with her genetics doc and say watch out because one day McKayla is going to be the worlds leading genetics doc she would always laugh at me.I did not really mean it then because the hope of that ever happening was so very slim.Now the sky is the limit,what a story McKayla would have to tell.Think of all the great people who had learning problems as a child!!!!Anyway whatever she ends up doing I will be so proud of her.It is really weird McKayla used to have this pain tolerance that was so high that is gone now she bonked her head on the table lastnight and started crying before she would not even have felt it.So I wonder if she could really feel anything before.Anyway one of our friends Renee from the U.S her daughter Savannah is being worked up for a transplant to cure her Citrullinemia.So if everyone can keep them in their prayers, that she is a match for her daughter that would be awesome!They also want to say good bye to the horrors of Citrullinemia.Renee and Savannah you are in my prayers,I cannot wait to be talking to you about life on the otherside!!!I hope everyone has an awesome day.I know I will!!Jodi

Saturday, May 29, 2004 9:18 PM CDT

So we had a bitter sweet Friday,the communication consultant came to our house and McKayla was off and on with her she was being a little moody but the woman who was here was really good with McKayla.She told me that McKayla had good imitation and that she should be saying three to four word sentances within the next three months all the steppings stones to speech are there.I got pretty emotional because I have been waiting to hear that for 5 years WOW!The one thing McKayla never really had before the transplant was the imitation and you cannot learn to speak without it.Anyway I have seen the improvement myself but to have it validated really means a lot to me.So that was the good part,then I had to trick McKayla.I told McKayla we were going for a walk and so that is what we did we inched our way toward the school I took her a different way so that she would not catch on to where we were going we were having such a nice time she looked so grown up.Then I took her to the school doors and handed her to Mrs.Pawlyna who McKayla really likes but McKayla was kicking and screaming.I wanted to grab her and run it was honestly one of the hardest things that I had to do.We all want to protect our children from pain and hurt,with the medical stuff I know it has to be done because her life depends on it with school it is a little different.So I sat on the school steps for a while and then I went in and listened to her scream at the classroom door I had really hoped she was going to be o.k but she wasn't.I also felt really bad for the teachers in there trying to calm her because if anyone knows McKayla she is the most stubborn person that I have ever come across and I strongly believe that is why she is still alive today.Anyway she stayed in for about a half hour and then she came out sobbing we are going to do this again on Monday afternoon.So I am going to try and muster up my emotional strength to do this I know it is best for her but I cannot help feeling like it is wrong for some reason.We went outside of the school that day and we saw Cory in the tennis courts with his friends and that made her feel better so we sat there for a while and went home but McKayla does not trust me now and I cannot get her to go any where with me again.Today I had to drag her into the car screaming becasue we had to pick up Cory I know that she is thinking that I am taking her to school.I don't know if forcing this on her is just going to make it worse or if she will see that it is fun and want to go anyway I hope it gets better soon.I hope everyone is having a good weekend.Jodi

Wednesday, May 26, 2004 9:52 PM CDT

I have to say sometimes I feel like I am living in a dream,things just seem so surreal sometimes.Today I had a lot of reporters asking me questions.They are basic questions like how is McKayla? How did all this start? I think wow that is like me having 10 kids and someone saying how are your kids you have 5 minutes to answer.Where do you start there is just so much to tell and all of it I feel is important every single second of her life.Sometimes my brain feels like it is going to explode ha ha.I am so grateful for the chance we were given to improve our lives but there are still families out there struggling with major decisions about there childs health.I pray for them because it is not fair for a Mother to have to hold her childs future in her hands.Having this website has given me a chance to write what I feel which has helped so much.Today was a long day but it was another good experiance for us and from everything we do we always take something away from it. Truly though, one day I hope I can sit and have a conversation with my beautiful daughter and she can tell me how this has all affected her.She is sitting downstairs right now watching her show and laughing it is like music to my ears! Jodi

Wednesday, May 26, 2004 2:44 PM CDT

Very interesting morning,all the local media was there so it will be on every channel.Also radio and newspaper.McKayla was freaked out at first but then she did fine.I will write more tonight.Jodi

Tuesday, May 25, 2004 2:48 PM CDT

Well we had a great long weekend it is to bad the weather was not nicer but that is o.k.McKayla has had some pretty emotional days.She sure loves the sound of her own voice though.Tomorrow we are going to the hospital and the public relations department for Capital Health has asked if they can follow McKayla's blood.So they have invited the media to come and watch McKayla get her blood work done and after that they are going to ask me some questions.The reason they are doing this is they have a machine here the only one in Canada that measures the anti-rejection drugs in two minutes that is pretty amazing.So they have invited,t.v,paper,and radio.We are not sure who is coming, but I am praying McKayla will be good.It is going to be interesting for us to see how it all works as well!!!Anyway I will report tomorrow what happened! Jodi

Friday, May 21, 2004 1:54 PM CDT

Wow what a great morning we had today!McKayla and I went to the Jean Vanier park which is her school.She played and all the other kids came out at recess,we saw Cory!A lot of Cory's friends came over and said hi to McKayla which made her feel special that was so nice of them to do that.Then Mrs.Pawlyna came out and saw McKayla which was awesome I think McKayla really liked that, she kept her head down but she had a grin on her face.The best thing ever all the kindergartens came out and I was so proud they were so happy to see McKayla and they all said hi to her,and wanted her to come and play. Mrs.Conroy and all those kids parents should be so proud of them because they are awesome kids I am so glad McKayla will be growing up with them.McKayla did go with them into the park,I will never forget this for the rest of my life! When I saw McKayla walking over into the park with the kids my heart melted.It was always easy for Cory he always fit in so that was never a concern for me.With McKayla my biggest worry was that she would not have friends and would not fit in,or that she would get teased because she is different,this always really, really scared me.Just when I think things can't get any better they do and all because of the great wonderful kids At Jean Vanier school.I am proud to say that I was a student there, and now my kids are a part of this wonderful school.I guess that is what this world is all about taking care of our fellow human beings,and what a great example of just that today.I hope everyone has a safe and wonderful long weekend I know I will!Jodi

Wednesday, May 19, 2004 12:40 AM CDT

Well thanks to Janet McKayla's bangs look awesome!!!We have had a good couple of days.We got McKayla to her school park and she had fun but we could not get her to the front of the school, baby steps I guess.I would just love to have a print out of McKayla's thoughts because she is so funny.Her new word is disgusting it is pretty funny she is saying it all the time.Lastnight for supper she ate three hamburgers she is really trying to catch up on all the food she has missed, I am not sure where it is all going because she is such a rail.So we went to the hospital this morning and McKayla was really good of course she talks to everyone we see.She rode in the wheelchair the whole time,so that made it really fast.We tried something different we went to the lab to get her blood work done,Joe was there her buddy and she was so happy to see everyone but we found out soon enough that no matter where the blood was coming from she was going to freak out and she did.She never minded needles before but now she goes crazy so next week we will just go up to the 5th floor and have the nurses do it out of her I-vad.I thought maybe if we went back to the lab she would be o.k like before but she is a different girl now.(for the better)She wasn't liking the fact that I dragged her out of bed at 8am though she likes to sleep in until 11am usually.Anyway things are well,I hope everyone has an awesome day!Jodi

Monday, May 17, 2004 10:47 AM CDT

So we had to major break throughs with McKayla this weekend.We actually got her over to my Dad's house it took a while but she did come and eat supper there and then she got upset and wanted to go home.She was so good there though,Kevin and Cory and I were so shocked she sat in the chair and ate we were so happy we were not running around after her what a difference.I was really glad though,also I got her to go to the park yesterday so that was really big I am going to try and get her to go to her school's park today.Cory is sick again he has the flu,I cannot believe how many things he has caught in the last two months one thing after the other.He had the flu then I got a cold which he caught and now he has the flu again.So I feel sorry for the little guy.Everyone I talk to is sick with something there is just so many things going around.I want to say congratulations to my cousin Shawn him and his partner had a beautiful baby boy on Saturday!I love our new life it is great!!!Jodi

Saturday, May 15, 2004 0:43 AM CDT

Oh my little girl was so cranky today!It is after midnight so it says Saturday but I am taking about Friday.We were going to go and see Shannon at ATB today they were selling hamburgers to raise money for the Stollery but McKayla was not going anywhere.All day she was just miserable everytime I asked her something it was NOOO!!!So I don't know what that is all about but she has a princess attitude.She is really starting to pick up though she is going outside way more and playing in the sand we ask her everyday if she wants to go to the park or the hill anything remotely close to the school but she always says no.I guess we have to get way more creative here.I really want her to finish up kindergarten in her classroom I think that it is very important.She is still saying new words,but I think maybe she should not watch the Simpsons anymore.We were wathcing it the other day and she knows all there names but she always says now "Homer Beer".I was telling her not to do something out front today and she goes "BART"It was really funny.I was thinking the other day maybe for the last couple of weeks she just wasn't feeling very good and thats why she was laying around so much.I am going to do everything in my power to get McKayla to the park and the school this week.I always did love a good challenge,I am just so very thankful for the way things are going with McKayla it just blows my mind how well she looks.I just look into those big green eyes and my heart melts I love her so much!I am so glad that we have her in our lives.Thank God for miracles!I hope everyone has an awesome weekend!Jodi

Thursday, May 13, 2004 1:11 PM CDT

McKayla has had a good couple of days.She tried a sausage mcmuffin for the first time the other day and she really liked it.I am sure there are still things that she has not tried that we have not thought about.She is starting to get off the couch more now which is good so hopefully we can get her to finish up kindergarten I would love to see that.I think if we could convince her to go she would really enjoy it.She did not participate in Cory's birthday to much the other day,but we had a good time.At the hospital yesterday she was very anxious I think that needle really hurts.So we had a long morning.Otherwise things are well her speech is still getting better everyday.I am going to see about maybe getting the blood taken out of her arm,she never minded that at all.The I-vad needs to be flushed once a month so we could just get that done and have the other blood work done at the lab.The needle they put in her chest is bigger than a thumb tac so you could imagine the pain and a lot of force needs to be put on it for it to go in.She was screaming yesterday,poor kid.She is very happy and we cannot complain.Hope the snow stops soon!!!Jodi

Monday, May 10, 2004 7:47 PM CDT

McKayla had a active day today it was good, she is actually capable of getting off the couch.She held me hostage in the house for a good fifteen minutes.She turned the hose on and was spraying it at the window and I could not run out and turn it off,she was laughing so hard it was funny.She is back on the couch now but at least during the day today she was playing and doing things.Tommorrow is Cory's 12th birthday how time flies!So McKayla and I will be busy baking a cake and doing things for that.We are also going to have someone come tommorrow to evaluate McKayla for next years school year,so that should be rather interesting because she really does not like company very much.I was trying to tell her someone was coming tommorrow and she just kept saying no.So we will see! Kevin cut her bangs yesterday they are a little crooked so I am going to see if I can straighten them tonight.Her hair is growing but she is still not ready for a full haircut there are so many uneven pieces.So we just keep trimming her bangs and when she is ready we will get her a cute little haircut.She got pretty emotional today,Sheila,Jason,Cassidi and my Dad were here and she was upset I think to many people make her nervous I am not quite sure.There was a little excitement someone started a fire in the field behind our house and Jason had to call the fire department but McKayla was not to interested in that at all I was shocked usually anything with sirens peaks her interest.Anyway things are well!!!!!

Sunday, May 9, 2004 6:10 PM CDT

HAPPY MOTHER'S DAY!
I wanted to say happy Mother's day to everyone.Mother's day is a day to honour the person who brought you into this world and who was there for you when know one else was.Mother's are such special people I miss mine today but I know she is close by us.This morning I was thinking of all the Mom's who have lost children they are the strong ones.I have met so many Mom's that have had to deal with this first hand and this must be a very hard day for them.Renee she has posted on here has a daughter Savannah who has Citrullinemia but she also lost twin baby boys when they were 7 and 8 days old that is so sad.I think today also of my nephew Austin who died at the age of three days old,he was such a beautiful baby.There were so many women I met in the hospital along the way this one Mother I will never forget she had three little boys I met her in the P.I.C.U.I had a chance to talk to her her son was two he was dying of Menigitis.She was probably 30 but looked like she was 50 she never left his bedside she was scared if she did he would die alone.My heart was breaking for her but when she started talking to me I almost dropped two months earlier her three year old had died from an inoperable brain tumor,she had left the room to get a coffee and he died when she was gone.She also had a 5 month old in the hospital up in Fort McMurray(His Dad was with him) and they had just found out that he was born missing a chromosone and he would be severely handi-capped.Her two year old sadly died a couple of days after McKayla left the P.I.C.U,but I never forgot that women her devotion to that little boy she would sleep on her arm because in the intensive care they don't have beds for the parents.The nursing staff chipped in to by her a massage but she would not leave for anything.I can't imagine the pain this women must have gone through.There were so many other stories there and today I salute these woman.Two of my Mom's friends Nancy who lost a daughter many years ago and Dee Dee who Lost her son a couple of years ago.And all the Mothers I have met who have had to suffer through this you are truly hero's.To my own Mother who showed me and my brother's laughter,compassion,and strength,and most of all love.Happy Mother's Day!!!

Thursday, May 6, 2004 11:52 PM CDT

So today we went back to the hospital for blood work and I guess everything was fine because we did not get a call back.I don't really like the no news is good news idea I like to know right away what is going on.It was great though because McKayla did not have to get an I.V but I am guessing that it was a lab error which is not very good for McKayla because she was not to happy about getting her blood taken again.We cannot not complain though that is for sure.We saw Tyler there and he had been in last week he was sick and then he was in there again today he had the flu I felt so bad for that little guy he is so cute and he has been through so much.It is weird because sometimes I almost feel guilty that McKayla is doing so well.So we have had two false alarms since the transplant but that is way better than something actually happening thats for sure.McKayla had a great day today she was a little more active.She won't go in the kitchen though unless it is to go out the back door why? Beats me she is so funny I would love to know what is going through this kids mind.Her hair is looking so beautiful, and today she told me I was fat!I think because earlier I said if I don't go to the gym tonight I am going to get fat.So she listens to everything that we say.She has this electronic letter learning toy and she plays with it so much it is so awesome for her.I was in the kitchen today and I heard her going one,two,three.I came running in good girl McKayla!I think I scared the crap out of her.Know wonder she doesn't talk that much she is probably scared that her Mom is going to give her a heart attack.Anyway things are well,I hope everyone has an awesome day.Jodi

Thursday, May 6, 2004 9:27 AM CDT

So we got a call from the hospital yesterday and apparently McKayla's magnesium and potassium are extremely low.What a difference one week makes they were good last week.All her liver functions were great though so this is minor.So we have to be there at 11am they are going to do her blood work and then if it is still really low she is going to get them boosted by I.V.So we could be in for a long day.But they both affect muscles so maybe thats the reason she won't get off the couch.She seemed to move around a little more yesterday she is really happy her mood has not changed so that is the good thing.I think she loves being served we bring her whatever she needs.Anyway I will update this tonight and let everyone know what happened.Jodi

Wednesday, May 5, 2004 1:13 PM CDT

McKayla and I went to the hospital today she was so awesome I was so proud of her.I have said she has been good before but today it was amazing.The nurses can always hear her coming here comes McKayla they say.She always goes and gets her own blanket and soaker from the linen cart and then proceeds to the room where they do her blood it is her routine.And then the nurse comes in and this particular one had to poke her twice one day and McKayla looks and her and goes "you" like she was evil or something.It was funny,so she did very well with that.Then we were going down the elevator and McKayla lifted her sweater up to take off her band-aid this boy was about 14 and he said "wow I would love to have a battle scar like that what happened to her."It was cute McKayla was just smiling so I told him she had a liver transplant.Then we had to go to the pharmacy McKayla knows most of the names of her drugs becasue I always say them as I give them to her.So she went up to the counter and said "Cellcept McKayla"It was cute I was so impressed with her today I was just beaming.This morning though I didn't think she was going to leave the house it took alot of bribes.All the way home I kept telling her how proud I was of her it was so great.We still cannot get her to go anywhere else it is funy because usually If I am going somewhere know matter what she will want to come, but she rather stay home.Anyway things are good,McKayla is so skinny still working on trying to get her to go to the park.Hope everyone has an awesome day!

Sunday, May 2, 2004 3:32 PM CDT

We have had a good couple of days,but we are getting concerned about McKayla.We are not sure why but she will spend hours and hours at a time on the couch watching T.V.We cannot get her to do anything else,this is so strange for her.The other night we wanted to take her to the park and she wouldn't go that was one of her favorite things to do and going to Mac's she just says no home.I realize her body has been going like the energizer bunny for 7 years but I think she is seeing the world really differently now and I really think that it is scary to her.We would really like her to go back to school but my plan to take her to the park has fallen through because she will not leave the living room.This last week we were even having a hard time getting her to go and play outside.I think alot of it has to do with security she feels safe at home and that is it.We had a birthday party for Kevin on Friday and she would not talk to anyone we were in the kitchen and outside most of the evening and she did not even come in the kitchen once she even eats her dinner, lunch, and breakfast on the couch she will not leave it except to go to the bathroom.I have made a phone call to the transplnat co-ordinator just to see if this is normal.She has been through alot but I do not want her to become a hermit.The one thing she will still do is go to the hospital which I think is strange because she knows she will have pain there anyway hopefully we can figure this out and try and get her moving.Jodi

Wednesday, April 28, 2004 1:31 PM CDT

Mckayla was so awesome at the hospital today she was so good.Her Dad on the other hand is in very big trouble,I got McKayla ready we usually leave at around 9:00am to be there for 9:30.So I go to find the keys and there are not anywhere to be found anyway I had to give up,thank God my Dad just lives across the street and he was home so we took his car.When we got home there was a message on the phone I am so sorry the keys are in my pocket from Kevin.Well he is in big trouble when he gets home from work today!McKayla decided that she was going to scare all the nurses today we have to go up to the 5th floor for blood work because of her I-vad so anyway she put these monster teeth in and roared so loud it was funny, and then she was laughing so hard.McKayla and I went and visited her old dietician just so she could see how well McKayla was doing so that was nice McKayla was awesome so she got to go to McDonalds it is pretty hard to order because McKayla talks into the speaker at the same time I do.We had a fun morning though I was really impressed with her today.I heard that Tyler is back in the hospital so I will have to call his Mom and see what is going on.Anyway things continue to go well McKayla is getting so tall,hopefully her blood work will be good again today.Jodi

Sunday, April 25, 2004 11:39 PM CDT

McKayla is so calm it is crazy we were outside watering the grass this evening, checking on her constantly she just laid on the couch and watched her shows.Last year if we were outside she would have been out there trying to get out of the yard hopping the fence all those kinds of things she is just so calm.She played with Cory and Alyssa on our trampoline today and she was having so much fun.We cannot get over how easy things are I say this all the time but it is such a shock we just sit there in amazement because everything has changed so much.I was always so tired before by the end of the day but now I have so much energy there was always something to worry about.Most nights I would have to stay up and top McKayla up on her formula.I love this life so much!She is so funny after every little thing I do for her she says thanks and everytime she says it my heart just melts.You can really tell that her body just wants to rest after being in perpetual motion for 7 years it just needs rest. She does not want to go anywhere lately she just wants to stay home or play in the yard I was going to take her to the park the other day and she said "no home" she definately just feels safe and secure here.She has this little lamb that my Dad gave her and he is so cute she named him Louie but it comes out as "ouie"it is pretty funny he was white but now he is very dirty I have to sneak him and put him in the wash tonight.She is still very skinny but she has not lost weight she has just gotten taller.I think she is going to be a very tall girl.Her hair is also still coming in very nicely I cannot wait until it is down to her bum!I truly appreciate every strand on her head I think I still suffer a little paranoia that it will fall out.There is know reason that it should.Well I have to say that life is great and tommorrow is supposed to be a beautiful day!Jodi

Friday, April 23, 2004 11:37 AM CDT

So McKayla did end up getting the flu she was very sick yesterday throwing up like crazy.I have to say though it was great(although I felt so sorry for my little princess)you may think that sounds weird but,for the first time it was not a huge worry not like before.When McKayla had a flu before it was awful I would still have to get her formula into her cut out all her protein make sure she was getting a ton of calories, that is really a hard thing to do with a child who is throwing up and then I would have to worry that her ammmonia was up so usually it would be a least two or three trips to the hospital to make sure her levels were good.Well yesterday all I had to do was clean up some puke and make sure she stayed hydrated exactly what I do with Cory.This is such a relief before flu was a nightmare I would pace and think of how creative I could be in getting the things into her that she needed,so that we did not end up in the hospital.Also I could let her sleep and not worry.This is such a breeze I cannot believe it, how did we get so lucky.Anyway McKayla was feeling better by lastnight so that was good she is back to herself today.I was nervous for the first time she got sick after the transplant now if it is the flu I know that we can handle it hands down.She had a flu shot but I guess it was not for this flu.Anyway life is great,I hope everyone has an awesome weekend.Jodi

Wednesday, April 21, 2004 11:43 PM CDT

Well I have been a little paranoid this last week Cory got the flu.He was so sick on Monday and Tuesday I am really praying that McKayla does not get it.Cory was fine today he went back to school I have cleaned everything.Poor Cory everytime he would puke I would get in there and scrub the toilet.I used to do this before to and most of the time McKayla did not get the things that Cory did so we will see now that she is immune suppressed.We went to the hospital this morning and I am happy to report that McKayla was a little angel.I asked her on the way to the hospital if she was going to be good and she said nope.So I said to her well at least your honest.Anyway she was awesome the nurses were all ready when we got there so we were in and out in about 15 minutes which is awesome.I am glad the weather is nice again we were outside all day today McKayla just loves it she looks like she has gotten taller again.I think after getting all of this protein her growth has just taken off.It will be interesting to see.Her hair is growing like crazy and for some reason she does not like to wash her hair anymore.I think it is funny because before she had to do it everyday now it sounds like I am killing her when I wash it because she is screaming, but I can only let it go for so long.She has been so good though it is still really hard to believe everything.This sounds gross but we have finally gotten the formula smell out of our car we had to take the formula everywhere with us and it would always leak onto something and even if you wiped it up right away it still smelled so awful.So it is nice to get into our car and actually smell the air freshner.Oh life is good!

Sunday, April 18, 2004 7:27 PM CDT

Well school may not be in McKayla's near future.I took her there on Thursday and she was so upset it was the last place that she wanted to be she would not even go in the front doors I tried everything.She has talked so nicely about going there and painting and playing with the baby and doing all the things she did before.I don't know why I have never seen her this stubborn about it before.I guess home is just her comfort zone right now she has been through alot and she knows if she is at home that she will be safe.So I guess we will ease her back I am not in a big rush because I do not want her getting sick so I will keep working with her at home.Her speech gets better everyday,it is so much fun.It is just amazing the improvement we have seen in her in such a short time and how different she is it blows my mind.I am going to do alot of work with her this summer and just see how much catching up we can do.She loves sitting at the table and drawing pictures and she loves to colour she always pretends she is doing her homework like Cory.I am just so happy right now I can't even explain it.We had a couple of visitors this weekend and they were amazed,Shawna has not seen McKayla since she was in the hospital and she was wondering what we did with McKayla because she is such a different kid.Kevin's sister was also here and could see a huge difference in her.She is speaking in very broken sentances like Mom shoes outside sand.So she is telling me, she just has to connect it all together but it is coming.This is such a big change from before also she has not had any seizures at all and if she gets to the 6 month point without any she will come off her seizure meds.That would be so wonderful they don't have any bad side effects or anything but it would be something thats for sure.Anyway thats all for now.Jodi

Thursday, April 15, 2004 8:46 AM CDT

Yesterday when McKayla and I were at the hospital we had a nurse that we hadn't had before.McKayla was being really good the nurse asked me if she was on something to calm her down I said no.Then I told her she was but we took her off it after the transplant.She asked me why and I told her I do not believe in these drugs and truly I don't.McKayla was on a drug called Risperdol it does not build up in your system so after two years her doctor finally convinced me to put her on something.So we did I never felt comfortable giving her something that altered who she really was but I was told it was in her best interest because she could hurt herself fine I made peace with that somewhat.What I have figured out is that I was just conforming to what society believes a child should be like.So this all entered my head lastnight, when McKayla is an adult will I tell her I put her on a drug so she could be someone who everyone else wanted to be around so she could be normal and when you think of it like that it sounds twisted I was trying to change who she really was with a drug.What are we teaching these kids.This is my opinion,the majority of these drugs are not tested on children so in 20 years from now who knows what will happen.So I was watching Dateline lastnight and they had the people from the Apprentice on there they were explaining the personality of one of the girls who is in the top 3% for selling real-state in the country.They said she is a go getter she never stops actually she is quite hyper.Thats my Mckayla now that is how people describe her minus the go getter part because she is a child.When we are adults the people who have all this energy end up being very sucessful they have drive they always have to be doing something,and alot of people say oh I wish I was like that I wish I had as much energy as so and so.I do it myself all the time.And then we have adults who don't have as much energy oh that person is so lazy.Switch back to child oh that kid is so hyper I can't believe it,and then the kid who sits nice and reads or watches t.v oh that one is so good they are so calm.So at what point does it change.I never thought about this like this before and it makes sense.So its like this, my child has alot of energy when I am an old lady I know she will bring me meals and tend to my garden and raise her kids and have a successful career.So who gives me the right to supress this little girls energy.I had a phycologist tell me once that if McKayla's stubborness as a child turned into perseverance as an adult she would go very far in life.That statement is something I will never forget McKayla's stubborness has kept her alive for the last seven years.All these traits that people generally see as disruptive or bratty could turn out to be my child's success.Do I regret putting her on this drug the answer is no.I have had alot of tough decisions where McKayla is concerned,I always try and do what is right.I also don't live with regrets,sometimes I overthink things though.And that is what keeps me up at night.Anyway that is my rant for today.Jodi

Wednesday, April 14, 2004 12:39 AM CDT

We did the balloons on Monday and it was so cute because McKayla knew they were going up to heaven to Grandma.It seemed like she really understood it this year.Cory and McKayla went and saw Dr.Teoh yesterday and McKayla did not want to be there at all she is becoming so much more anxious when it comes to anything medical which is understandable.I had to go for bloodwork as well yesterday just to make sure evrything is normal with my liver.I found out yesterday that the steroid McKayla is on causes severe mood swings which I can see.They are not to bad but enough that we notice it for sure.We went to the hospital this morning it was pretty slow moving McKayla was really good she did not cry so the nurse must have got a good poke into her.When we were leaving a man stopped us and told me we had a flat tire McKayla thought that was pretty funny I didn't.Lastnight I was reviewing Cory's social with him and I think McKayla was a little jealous so everytime I started reading she would start singing Ya Ya Ya,I would stop and she would stop but when I would start reading she would sing again as loud as she could Cory and I were laughing so hard we were crying it was so funny what a little stinker.I don't think I have ever seen someone eat so much turkey in my life she just loved it.With McKayla eating protein there are never any leftovers anymore which is a good thing I am trying to get her to drink more milk though we will see what happens anyway things are well.Hopefully this yucky snow will go away.Jodi

Monday, April 12, 2004 0:57 AM CDT

Happy Easter to everyone!We had a great Easter McKayla has been munching on chocolate constantly.She had turkey for the first time and she loved it.Also she had meatballs I had forgot she hadn't tried those before either it was just great seeing her today.She had all her goodies in her big basket and she carried them around with her all day today she was making sure nothing happened to them it was so cute.I am still having a hard time getting her to come inside these days she just loves being outside and then she sleeps so good.She has gotten a couple good scrapes from being outside and I notice they don't heal as fast so I just keep putting anti-biotic cream on them so she does not get and infection.She must have such a strong immune system.Anyway it was a very fun weekend and I hope everyone had a great Easter as well, it was my niece Maya's first birthday on the 11th and today is my Mom's birthday every year we let balloons go into the sky for her so that is what we will be doing.My Dad,Cory,Mckayla and I have done this since she passed away and it makes us feel so good.Cory always says look there going straight to heaven.I think she has helped McKayla do so well, she was by our side through this whole thing.I miss her so much!Jodi

Thursday, April 8, 2004 0:25 AM CDT

McKayla and I had an interesting day today,we got up and we had to go to the hospital.McKayla decided that she had to bring all her favorite things so she grabbed a basket and started filling it.This is a really funny looking basket with a big,huge handle on it.She wanted to bring her sheep which is really small and we had to put sleepers on it,then we had to dress up her baby.She also put a few other things into this basket and then tucked it all in with a blanket it was so funny why she wanted it I don't know.So we were on our way there and I could smell something really gross I couldn't figure out what it was.But when we got into the hospital and she laid down for her needle I could see she had stepped in dog poop.Great I was a little embarassed but thats o.k it wasn't the first time and I am sure it won't be the last.When we got onto the elevator it was full and the nurse we usually get says "McKayla it is just a little stick" well McKayla cannot really get her S's out so she says dick.She was a little upset and she kept saying dick on the elevator and everyone was staring at me.I kept saying "yes McKayla you got a little stick in your I-vad" and they were all looking at me going ya right lady.So have to really work on those S's .Lately Mckayla has been saying a word and we could not figure it out at all it sounded like was carmine and I kept repeating it back to her and asking what does this mean.Finally I figured it out today she has been saying come on,I love when we solve these little mysteries.Another one is thanks she says that after everything we do for her it is so cute it took a while to figure that one out to but it makes my heart melt everytime I hear her say it.Anyway we are getting really excited for Easter I think she will love the turkey.Today she carried around a coupon from KFC so we had to get it for supper,I have never seen a little kid eat as much as she does but she is skin and bones right now and all covered in bruises.I guess when she comes off the blood thinners that will clear up but for now there is barely a spot on her body that is not bruised.I saw Tyler's Mom today he is doing great, she said he is the same everytime she touches him he has a new bruise.So I told Cory to not wrestle with her right now.Sometimes she tackles him though and he can't resist.I hope everyone has a great day.Jodi

Monday, April 5, 2004 2:11 PM CDT

Well today is the three month mark so far no infection or rejection so we will keep our fingers crossed it is crazy the time has gone so fast.McKayla is really enjoying this weather it is really hard to get her to come in the house these days.Still know escape attempts so I hope that will continue for sure.Cory had a hockey tournament this weekend and he got mvp wich I am so proud of and so was he it was great.I am looking forward to Easter,McKayla will be tasting turkey for the first time.Also I have always had to get special things for her from the Easter bunny but now she can have everything Cory has it is so exciting.It is like having a new child.There are still things I am sure I have not thought about.She is sitting nice right now watching her shows she has her little sun dress and hat on she looks so cute.I hope everyone enjoys this beautiful day.

Thursday, April 1, 2004 11:55 PM CST

We went to the hospital yesterday and everything went great we saw Tyler up there he was getting his blood work done to.Cory came this time which was nice McKayla was proud to show him what was going on.Then lastnight we wentfor a visit to my cousin's house and McKayla was so good,normally I would have left anywhere completely exhausted,but not this time.I was so proud of her she sat for two hours and played with toys.Now you have to remember this was a kid who could not sit still for more than 2 seconds before and that is a pure fact.So as you can tell it just keeps getting better.Cory is having so much fun with her as well he likes that he can teach her new things.I also started thinking of all the things we couldn't do before because McKayla was so hyper,like taking her to a movie or going out for dinner we are going to start trying these things.Our life basically stopped for so long in a way.We would always say oh we can't do that because McKayla.When I think about it Cory still had time with me but it is really nice to do things as a family he has missed out on alot.So I just realized this yesterday if McKayla can be that good at someone elses house she may just be fine doing other normal things.We will see what happens it is really exciting.Right now I am trying to set up a registered charity,the reason I am doing this is because when families have a chronically or terminally ill child they take such a financial blow.I met so may families in the hospital that did not have the money to be there and it is something thats kept very quiet.Most of them were middle income people that never expected to be there.So I will keep everyone up to date on my project it could take a long time but it is something that is needed so badly here.So I am very excited about that as well.I hope everyone has an awesome day!!!!

Wednesday, March 31, 2004 0:28 AM CST

What a beauthiful spring day it was today I could not get McKayla in the house today and worse yet I couldn't get her to take a bath after a full day outside.I think maybe my bribery skills are a little rusty I will have to work on them for sure.She was so chatty today it was so funny not all of it could be understood but she went on and on.She loves looking at herself in the mirror when she talks it is funny to watch.I think when the speech really gets going McKayla will never stop talking and that will be like music to my ears.I am thinking this summer will be alot easier McKayla does not seem to have the urge to escape all the time but I will be watching her like a hawk in case some of her old tendancies come back.That was all she was ever interested in was finding a new way to escape out of our back yard.I always keep our front door chain locked because she used to try and sneak out that way.It was kind of funny a couple of years ago Kevin and I were trying to figure a way to make it escape proof for McKayla(never really did work she is a clever little girl)Anyway we were in Walmart looking at all the locks and talking about it and this sales lady pipes up and says"wow it sure sounds like you guys live a very interesting life".I was like yes you don't even know the half of it.So we will see what the months ahead bring us but it is very exciting.I also wanted to report that Tyler is out of the hospital and doing very well I wish then all the best they deserve it so much after all this time.Anyway that just lifts my spirits even higher.Jodi

Monday, March 29, 2004 11:53 AM CST

Well we had a great weekend the weather was not that good on Saturday but we made the best of it.I think this is the first year McKayla really knew it was her birthday the day before and she was excited for it so it made it that much more fun.Her eyes just lit up when we sang happy birthday to her.Her speech continues to improve it is so funny I think we scare her sometimes because we get so excited when she says something new.She is starting to put three words together which is really good.The t.v is a major part of her day she loves watching her shows and she repeats what she is hearing on there.Kevin took her to the park yesterday and she loved it that is one of her favorite places to go except it was a little to wet so they had to come back.Also they called from the hospital on friday and they are lowering her anti-rejection meds again.I will update soon.Jodi

Friday, March 26, 2004 10:03 AM CST

Continued from yesterday........
When I brought McKayla home my Mom and Cory had balloons and a big welcome sign set up.My Mom was at the hospital with me all the time she was so strong for me.McKayla came home with a central line in her chest because we would have to go for blood work a lot.Every second day I would have to set up a sterile feild scrub from elbow to finger tip put on a mask and gloves and clean the site where the line went in I then would have to flush the line with a needle.Making formula for the first time was daunting but after a while I became a pro.McKayla was such a good baby for the next 8 months she slept and ate and was always smiling.Cory started kindergarten and ended up getting the chicken pox he had 20 spots that was it!(the vaccination was not yet available)then a couple of weeks later McKayla started getting spots that kid was covered from head to toe they were every where our life was never to be the same after those dreaded chicken pox.McKayla's sleep schedule was backwards she was up all night everynight if she would have been an only child fine but I had my wonderful Cory to look after to I was a zombie.McKayla was developing normally she sat up ,crawled,and walked on time.This poor kid was always being evaluated, at the Glenrose every six months.This was all good until she was supposed to be talking and than the evaluations got worse whenever the evaluations would come I would have my back up I was reading 5 pages of professionals saying what was wrong with my child those were always hard to take it was always speech.What bothered me the most is they would spend 30 minutes each with her and think they had it all figured out.The best one I got was when McKayla was 18 months and the physcologist wrote that McKayla was a very un-cooperative child I was laughing my head off she was 18 months.After that I let it roll off my back.McKayla did not go back into the hospital with illness until 19 months of age where she got a very bad flu she was in there for 5 days.After this admission all her hair fell out never to grow properly again.McKayla pulled through that she was one of the only kids without a g-tube a tube,that is where she could be fed through her stomach,because she was such a good eater we were blessed that way.If she wouldn't drink her formula I would sit up at night and feed it to her when she was sleeping.A couple of months went by enter the world of seizures my Mom and I were sitting watching t.v and I was holding McKayla all of a sudden she had a seizure.I have seen this kid go through so much but that was actually the scariest moment I can remember.We took her to the hospital her ammonia was good and then started the guessing game we called our lives.My Mom strong armed the neuroligist because he didn't think thats what it was, well she had seen lots of seizures because she was a special needs assistant.They did an eeg sure enough,McKayla was diagnosed with am undefined seizure disorder.The seizures caused alot of trouble we were in the hospital for them more than the Citrullinemia,McKayla's third birthday was spent there.My Mom was then diagnosed with cancer she had been in pain for a long time and they kept telling her she was depressed well the cancer was everywhere our family was devasated she was diagnosed on Sept 29,2000.My Mom was the center of my whole families universe she showed so much strength and courage through everything.Our family never left her alone in the hospital and we had so much support from people our family and friends, her staff at St.James school were amazing.Our family always had laughter my Mom and Dad gave us that if there was a joke to come out of anything we made it happen.My Mom died Dec 8,2000 we were all there, my Mom touched so many lives,a nurse called me after from the pallitive care at the Grey nuns and told me that my Mom said she was going to be Cory and McKayla's gaurdian angel.This was really hard on Cory to he has been through a lot my Mom was like his second Mom they had such a strong bond.McKayla started a program at Wes Hosford school I cannot say enough good things about that place and the people in it.I was so scared to send her and then I had the honour of meeting Karen Arnold she was awesome the first time I met her I felt comfortable leaving McKayla in her hands.She reminded me of my Mom,they worked very hard with McKayla there.Working with special needs kids you have to be a special person and that was the case.One morning I went to wake McKayla up for school and I couldn't wake her so I called an ambulance she was four at this time.We got to the hospital her ammonia was fine this was a Monday they gave her I.v drugs to stop the seizures and wake her it didn't work they told me she was in a coma and they would try again but they didn't think she would come out of it,still nothing the doc came in and said McKayla is not going to wake up I didn't even cry I looked at him and said she will,I knew she would.Finally on Wednesday afternoon McKayla popped up and jumped out of bed and that afternoon we went home unexplained,it was actually funny, this kid always amazed us.There was more in and out of the hospital and there was always something,McKayla was a puzzle.The next big illness was Dec 2002 McKayla had been sick I had her to the doctor her ammonia was not high and then her doctor did a blood culture on her thank God or McKayla would not be here we were still at home and we were feeding McKayla through a nasal gastric tube Kevin couldn't look when I put it in.The doctor called on Saturday night he said get in here McKayla is really sick he had just got the blood culture back.They figure she had a bladder infection that had spread to her kidneys and spilled into her blood stream the bacteria is ecoli which I found out we all have in our urine.McKayla had an infection in her blood stream they were scared it had went to her brain but it didn't. oh was she sick,her blood pressure was all over the place it was scary.She became protein deficent and she looked like a child from the third world after this happens it takes forever for your body to catch up.She over came that there was a possibility her kidneys were damaged and thats the way it looked from the ultra-sounds if they didn't heal McKayla would never have a transplant.But they did so that was another little miracle.There is so much more in between things that I have left out but if I wrote everything it would be a book.Finally you just get sick of dealing with something you or the doctors don't know much about,I kept getting told transplant is just trading one condition for another hog wash, not true.Transplant is a miracle and so are the doctors and the surgeons and most of all McKayla!I just wanted to give everyone a little history on Mckayla since I never did that at the start and I know a lot of people don't know what she has been through.Have a happy, happy day!Jodi

Thursday, March 25, 2004 10:25 AM CST

I wanted to write a little about McKayla and what happened seven years ago.Mckayla Margaret Pauline Marshall Phelan was born at 12:43am on March 27,1997.She weighed 7lbs 2oz and was the most beautiful little girl I had ever seen,my Mom was there with me(Kevin was working and we couldn't get a hold of him poor chap!) when she was born and the moment they placed her in my arms The Dance came on by Garth Brooks I will never forget that.Cory was not to fond of her name because he wanted her name to be Katie.McKayla arrived just before Easter which was perfect because Uncle Kenny was coming from Vancouver.The first two days after her birth were normal and then she started looking really spacey and I was having a hard time nursing her.I took her to the Grey Nuns hospital they told me I was worrying for nothing deep down I knew that could not be true.I took her home and my Mom stayed up with me to try and get her to eat,the next day I called her then doctor she told me to call a health nurse to come over in Sherwood Park by this time McKayla was making a little grunting noise,the health nurse told me she had gas and to get some gripe water,I called her then doctor again she said yup probably just gas.By this time McKayla felt cold as ice so My Mom and I took her over to the Medi-centre in Sherwood Park the doctor there said this baby is very very sick and she called an ambulance.We arrived at the U of A and I got to sit with McKayla the emergencey room doc intially told me she was a failure to thrive baby, wrong.There was a phone call for me and they called me out of the cubicle,it was Kevin I remember the emergencey was very busy and the room started to spin and I yelled to him in the phone"the baby is really sick"the doctor came up behind me and took the phone.Then I went to walk back in to where McKayla was and two nurses grabbed me and said I couldn't go in.What I had learned was that McKayla went into respitory failure.My Mom and Dad showed up at the hospital and we had to wait.Then a doctor came out and said McKayla would be going up to the P.I.C.U she was very sick he told me I could walk with her there when I first saw her on the bed I could not believe they could fit that manys things into my tiny baby,thats when I took my first walk down the hall into a world I never imagined I would ever have to face.When we got to the P.I.C.U they said I could see her for a moment and then I probably could not see her until the next morning which was devastating.When I went in she was having a seizure she was so small.The next morning they still could not figure out what was wrong with her and then a resident had an idea to check her ammonia level I was standing by McKayla when the phone rang and this nurse screamed it's what!I was thinking wow they must have finally found something the nurse turned to me and said her ammonia level is 982 normal is 50.Well I never knew that we had ammonia in our bodies I guess I didn't pay close enough attention in biology.I immediatly thought she some how breathed in windex when we were cleaning the glass table.This gave them a lead on what to test for next and things started rolling.On April 1,1997 McKayla was diagnosed with Citrullinemia April Fools Day.When the doctors had called for someone from genetics to come up,they thought it was a prank because this disorder is so rare.By this time McKayla was 6lbs and they had to do dialysis on her to get the ammonia out of her blood as quickly as possible.They made an incision in her groin when they did this she started bleeding and they couldn't stop it.I remember sitting on a stool by her and there was blood all around my little baby.McKayla had blood transfusions and they told me to prepare for the worst.But due to there amazing skill and Mckayla's strong will to live it was stopped.The next day they decided she would need a central line put in her neck I would have to leave while they did this.When I came back I called to see if I could go in the room and they said no the doctor would be coming out to talk to me.My Mom was with me and I thought for sure McKayla was gone because they asked if I had family with me.The doctor took me into this little room and told me that he had punctured McKayla's lung and it had collapsed,this only happens in 1% of the cases and he never had it happen to him before.So the fight for life was on even more now.That was all in the first three days,and then she started to improve but they still told me she had know chance.I remember making a deal with God saying let my baby live and I will take her know matter how much damage has been done.From then things got better she was a main attraction in the P.I.C.U because of all her hair.One of the saddest things I remember when she started to come out of the coma was she would cry but know sound would come out because the breathing tube goes past the vocal cords.From then on she just kept getting better and boy could she eat.They were so amazed by her recovery,in total she spent only 12 days in the hospital that must be her magic number.I always think of this at this time of year and it feels good to finally put it into words.McKayla had a broviac in her chest for the first 7 months so they could do blood work.I am so happy to say good-bye to the Citrullinemia but it also amazes me that they could catch it and treat it and let McKayla hold on until this amzing transplant.There were so many people that were angels to us,McKayla's dieticains they went above and beyond they counciled, they advised and they are friends.When McKayla was sick they were there when they could have been at home with their families.I salute them because without them things would have been harder than they were.And to everyone else along the way so many people,my Mom she was my strength.There is so much more to this story but against all odds McKayla is here to celebrate her seventh birthday.WOW!Jodi

Tuesday, March 23, 2004 2:41 PM CST

Well Mckayla had am emotional day yesterday,I think she may have been over tired.Today though she is in a better mood.The coolest thing happened this morning,she didn't wake up until 11:30am.Which doesn't sound very cool but the thing is before it would have never happened because sleeping is a sign of high ammonia.So I just got to let the little angel sleep.We went to Mac's yesterday and she picked out two chocolate bars that she never had before which was fun.I will never get sick of seeing her eat all of the things she wasn't aloud to have before it's awesome!I never want to forget how cool this feels ever.I always want to remember how our life was before so I always truly appreciate the good fortune that we have been given it is so awesome.McKayla will start back to school mid April so we will see how she does there.I babysat my little cousin Ray-lynne the other day and McKayla was so good with her, before she was so over bearing.It was such a big change she really respected Ray-Lynne's feelings.So that was great.I am feeling so awesome this week I have a lot of energy and my incision is feeling great.McKayla's birthday is on Saturday I can't wait we will be having a high protein birthday party, for the first time I won't have to even think of restrictions life is so much easier,I love it.Anyway I hope everyone has a rainbow day!!!!!Jodi

Saturday, March 20, 2004 10:07 AM CST

Way to go Oilers Cory and I went to the hockey game lastnight it was a great game.Cory has been lucky this week because he also got to go to the Nickleback concert and sit in the skybox so he has been all smiles.McKayla and I made it through our first week alone since Kevin went back to work and it went well.McKayla's hair is growing like crazy I can't wait until it is down her back.Her and I were cleaning yesterday and I told her we needed another cloth and plain as day she said"found one"it was so awesome.All McKayla's blood work is still really good so thats awesome.What more can I say we are all doing very well.We are very happy and ready just to enjoy our weekend.I hope everyone has a great weekend as well.I cannot wait to say goodbye to this snow.Jodi

Thursday, March 18, 2004 0:03 AM CST

HAPPY ST.PATRICK'S DAY
Well I have to say we had a great start to our day.McKayla beat Cory over to Papa's this morning and got some money.For anyone who doesn't know the first person who comes into your house on St.Patricks gets money.We went to the hospital today and McKayla was really good I was so impressed because I know when that needle goes into her I-vad it really hurts I felt bad for her but she was so tough.Then we went to Walmart and she had a moment a little tantrum she wanted McDoanlds and I told her she had to wait till we were done getting our stuff so she was crying.This lady stopped right by us and just stared with her hand on her hip the whole time I was smiling and trying to reason with McKayla which did work it never would have before.I was so mad though I couldn't believe this women I wanted to say something which I usually do because I am an outspoken person but I let it go it bugged me all day for some reason.So I wrote a little poem it is really cheesey but sometimes that helps me and I am going to share it with all of you keep in mind I am not a poet and I know it:
MY NAME IS MCKAYLA I'M ONLY SEVEN
MY FAMILY THINKS I'M AN ANGEL FROM HEAVEN
I HAVE HAD MORE PAIN THAN MOST CAN BARE
THOUGH WHEN I FREAK OUT AT THE STORE
EVERYONE STARES
ONE LADY TODAY STOPPED IN HER TRACKS
FOR THE SHOW
MY MOM SHOOK HER HEAD
AND SAID YOU DON'T KNOW
ALTHOUGH THEY LOOK AND THINK IT IS SO SEVERE
THEY HAVE KNOW IDEA HOW MANY TIMES I WASN'T EVEN SUPPOSED TO BE HERE
MY LIFE HAS BEEN SHORT AND SO FULL OF HURDLES
I THINK SOME OF THOSE LADIES SHOULD LOOSEN THEIR GURDLES
BUT I STILL SMILE WHEN MOST ADULTS COULDN'T
SO IF YOU THINK YOU SHOULD BE STARING YOU SHOULDN'T
If I didn't have laughter where would I be,my beautiful McKayla is so strong I love her and Cory so much.I don't normally let these things bother me I know these people are thinking what a brat but you know we all have a story one day someone is crabby to you we don't know if they just lost there Mom or Dad or spouse or child,or if someone they love is sick or dying.The thing is it is not printed on our foreheads so I guess I should give people a break.We have all been through tough times in our lives and sometimes you want to scream to the world look at me I'm hurting how can everyone just go about there business.Anyway right now we are at a joy phase so I let the negative roll off my back and focus on the positve which right now is abundant in my life.I have to say a long over due thank you to Renee her daughter Savannah has Citrullinemia they live in the U.S she was the one who told me about this website it has helped me so much.Jodi

Tuesday, March 16, 2004 9:52 PM CST

McKayla is doing awesome,she will not go any where without that little stuffed puppy she got.It is so cute she sleeps with it and everything.We have to go to the hospital tommorrow and get blood taken so I hope it will be uneventful.Tommorrow is St.Patricks day so I will have to pull out the green it was one of my Mom's favorite days.Kevin went back to work on Monday so that is good,but McKayla and I are on our own now.I hope he does not have to go out of town to much right away.I went to Cory's game lastnight they didn't play very good,Sheila and Cassidi came and so did my Dad so it was nice to have them there.Cory and I went to the woman's gold medal game on Sunday night which was nice Alberta lost but it was good to get out and do something just with Cory.McKayla is still having some emotional outbursts not as often though but when she does she gets really upset.I think it is harder for her now becasue she is so much clearer but the words just aren't all coming out right yet.For the most part though she is doing so well.I have noticed things are staying cleaner longer it used to be such a chore because I would clean one room and 5 minutes later it was destroyed again now it is lasting at least a couple of hours for the most part which makes it nice because I am not running around like a chicken with my head cut off.Also she is starting to really like cheese wow!Anyway we will see what tommorrow brings.Jodi

Saturday, March 13, 2004 11:00 PM CST

We have had a good weekend so far McKayla does not want to come into the house.She really likes to be on her own now,which is great because before she had to be with someone all the time.The seperation issue is getting way better but everytime I leave the house she wants me to bring her a whole list of things back,chips,gum,onion rings.It is pretty funny,Cory had hockey today they did not do very well.McKayla is sleeping like a little angel right now lastnight she could not fall asleep.I think because I had to wake her at 10pm to give her meds and then she wanted to watch robinhood again.So this morning she slept in till 10:30am which was funny.Then she had to have her two boiled eggs and hashbrowns.I don't think I will ever get tired of watching her eat meat it is so awesome.I have been having a lot of pain on my right side this week so I hope that will go away soon,I have found an online group where all the people on there have donated either a kidney or part of their liver so that has helped a bit beacuse there is not much not about the long term affects of donating so they can give me a bit of advice which is really helpful.When they take part of your liver they also have to take out your gallbladder which apparently can cause discomfort for sometime it is nothing major though just slowing me down a bit.Otherwise all is well.Jodi

Thursday, March 11, 2004 10:25 PM CST

We had a good day today,I love when people stop by and tell me how much McKayla has changed we see the difference in her but we see her everday so I think when people don't see her for a long time they can judge better.McKayla has been talking about school steady.That is a really big change because she has never been a big fan of school because she knows she will have to leave me.Also when she goes to pronounce things now she is trying to make it clear and it sounds really funny coming out of her mouth.She is getting really set into a routine at home in the morning she has to have two bolied eggs and five hashbrowns.She is very skinny right now she has always been a hardy little girl but she does not need as many calories as she did before.I think she is eating more than she was before though,she is also getting taller.I am really tired tonight I have been the last couple of days so I think I will turn in early.Goodnight Jodi

Wednesday, March 10, 2004 12:43 AM CST

I want to thank the parents from the Reach program a box of goodies were dropped off on our door step yesterday.McKayla loved the puppy she took it with her to the hospital this morning.We always have an adventure when we go to the hospital because McKayla does not want to leave when we get there which speaks volumes for the way she is treated like a princess.We had her bloodwork and then we went to see Tyler and he looks awesome they were going home today on a day pass he is up and walking around.But when it was time to leave McKayla started crying and I had to do alot of convincing to get her out of there.When we got to the car finally, I realized that we had dropped her blankie somewhere,I though there is know way I am hiking all the way back.With the construction that is going on there you have to walk about two miles to get to the unit that does her blood.So I pulled out of the parking garage and saw her blankie on the stairs thank God.So we are home now and she is watching her movie we will probably go for a walk later and on Wednesday we always hope we don't get a call from the hospital.Oh and I think McKayla is going to need another trim soon all that protein is doing the trick.Jodi

Monday, March 8, 2004 11:15 PM CST

I am so glad some nice weather is here McKayla did not want to come in the house today at all she has always loved being outside.We will have to really watch this summer though because the anti-rejection drugs make you really sensitive to the sun.So she was pooped out really early this evening.It is really weird I was reading our article in the paper and it is like reading about someone else it just really doesn't feel like all this happened.It seems like just yesterday that we had made the decision to do this.Of course I am reminded everyday by how things have changed with McKayla but it still seems weird.Anyway I don't know if that makes any sense at all.It is three months today that Tyler had his surgery and they are still in the hospital so I am going to see him on Wednesday,I really hope they get to go home soon that is so long.I often wonder why McKayla's went so well and Tyler was the complete opposite.McKayla's 7th birthday is coming up on March 27 so I have been talking with her about that alot she loves her birthday like most kids she gets so excited this year I think we will be celebrating a little more.She was given the gift of life for a second time on Jan 5 ,2004 so now she will always have two birthdays.I think that is really cool that is what they call the kids yearly anniversaries of there transplants the day they were given the gift of life.How true that is it is such a relief not having to play a guessing game everyday of our lives wondering if McKayla is well or sick.

Monday, March 8, 2004 11:15 PM CST

I am so glad some nice weather is here McKayla did not want to come in the house today at all she has always loved being outside.We will have to really watch this summer though because the anti-rejection drugs make you really sensitive to the sun.So she was pooped out really early this evening.It is really weird I was reading our article in the paper and it is like reading about someone else it just really doesn't feel like all this happened.It seems like just yesterday that we had made the decision to do this.Of course I am reminded everyday by how things have changed with McKayla but it still seems weird.Anyway I don't know if that makes any sense at all.It is three months today that Tyler had his surgery and they are still in the hospital so I am going to see him on Wednesday,I really hope they get to go home soon that is so long.I often wonder why McKayla's went so well and Tyler was the complete opposite.McKayla's 7th birthday is coming up on March 27 so I have been talking with her about that alot she loves her birthday like most kids she gets so excited this year I think we will be celebrating a little more.She was given the gift of life for a second time on Jan 5 ,2004 so now she will always have two birthdays.I think that is really cool that is what they call the kids yearly anniversaries of there transplants the day they were given the gift of life.How true that is it is such a relief not having to play a guessing game everyday of our lives wondering if McKayla is well or sick.

Sunday, March 7, 2004 6:09 PM CST

We went to Whitecourt this weekend for Cory's hockey tournament,Mckayla loved the hotel she still wants to go back there.Kevin and Cory went swimmming with her she is just like a little fish it is her favorite thing to do.She wore her bathing suit under her clothes until she got to the pool.She had a bag packed today and was heading out the door and I asked where she was going and she said hotel.We thought it would be fun to take her to fantasy land hotel one time she would be thrilled.Robinhood is stilll the movie of choice she watches and laughs.It is funny because when she gets stuck on something that is it.Tyler's Mom called me from the hospital on Friday and something else has gone wrong so he is still in there I cannot believe that,it has been so long I hope they get to leave soon I will be prayng for them.

Thursday, March 4, 2004 3:09 PM CST

Well McKayla has been very lazy the last couple of days it is really funny she has been watching her Robinhood dvd over and over again.Lastnight I think she came out of my room once it is really good she is resting I find I am actually bored I am not used to having free time because she is actually entertaining herself.They always say when you can't have something you want it even more and I have noticed that with McKayla she is still eating like crazy but it is not such a obsession anymore to get in the fridge and the cubboard.We used to have to get so many calories into her in a day that she always had four different things going at once it's not like that anymore so it's just awesome.She really likes playing in her room to and if we go up there she tells us to go she wants her own space which was never the case before.We still check on her constantly but she is not doing anything wrong which is shocking.This last week we have seen the biggest change in her I am so excited for things to come if this is all happening now I cannot wait to see what a year brings.Tommorrow we are coming up to our two month anniversary ot the transplant this is very important because the further away you get from the date of surgery without problems the better off you are.My Mom always told me not to wish my life away but in this case I do want the time to pass so we will know McKayla is safe.For anyone who is out of town we were in the Sherwood Park news again this week and you can see it online at www.sherwoodparknews.com click on community and there is our story.Also the one before is still on there to you can go to the same web page go to archives and put Jan 7,2004.They were both really nice articles we have had some done before where they were not accurate these were both done awesome.The reporter who came both times was so nice she did a great job.McKayla is watching her movie right now and laughing away.It is so cute!Jodi

Tuesday, March 2, 2004 0:22 AM CST

McKayla did the most amazing thing lastnight,she went up to her room turned off the light and went to sleep in her bed by herself it was like a miracle.She has never done that before in her whole life ,I just stood there going oh my God I cannot believe this I was so shocked it was awsome.I was talking to her about school today and she said she wants to go there and play with toys and paint which is really good because normally she says no right away but I think she is starting to get really bored.McKayla is not aloud to go back until April 5 so I am thinking maybe after springbreak if everything keeps going well the docs said to not rush it.Maybe just have her go a couple times a week I don't know I just would hate to have everything go so well and then for her to get sick but we can't keep her home forever.Plus I know Mrs.Pawlyna misses her,so we will see what happens she is getting better at me leaving her she will only cry for a bit so I hope that will carry on to school we will see.Anyway I am going to print this whole web page off and put it in McKayla's baby book when it is done she will have her own journal of what went on and of course all the guestbook entries to read when she is older.Anyway I guess it is way past my bedtime I can always tell the late entries my spelling is horrid.Goodnight Jodi

Tuesday, March 2, 2004 0:22 AM CST

McKayla did the most amazing thing lastnight,she went up to her room turned off the light and went to sleep in her bed by herself it was like a miracle.She has never done that before in her whole life ,I just stood there going oh my God I cannot believe this I was so shocked it was awsome.I was talking to her about school today and she said she wants to go there and play with toys and paint which is really good because normally she says no right away but I think she is starting to get really bored.McKayla is not aloud to go back until April 5 so I am thinking maybe after springbreak if everything keeps going well the docs said to not rush it.Maybe just have her go a couple times a week I don't know I just would hate to have everything go so well and then for her to get sick but we can't keep her home forever.Plus I know Mrs.Pawlyna misses her,so we will see what happens she is getting better at me leaving her she will only cry for a bit so I hope that will carry on to school we will see.Anyway I am going to print this whole web page off and put it in McKayla's baby book when it is done she will have her own journal of what went on and of course all the guest book entries to read when she is older.Anyway I guess it is way past my bedtime I can always tell the late entries my spelling is horrid.Goodnight Jodi

Sunday, February 29, 2004 2:14 AM CST

We have had a really good week McKayla is sleeping in a little later so that is good because she really needs her rest.I am still having a bit of a hard time with the muscle in my stomach I think I will get it checked tommorrow just to make sure it is nothing but that.Everytime I move the wrong way it burns.So it also makes me wonder how McKayla jumps all over and never shows any sign of pain mind you she is way tougher than me.Kevin will probably go back to work soon as long as my stomach heals up,otherwise things are really going well.Everyone who comes to see Mckayla can really notice the change in her speech so that is really exciting.She still loves to go to Mac's and get her candies and chips.I have really noticed that she is growing like crazy getting taller.Also she is a total drama queen,she will stand at the window when one of us goes out and screams WHY! Over and over it is so funny she does not seem to think so though.We also bought her a big bucket of lego and she sits and plays with it for hours.All these little things are so exciting everyday there is something new.We talked to Tyler's Mom yesterday and he is getting out of the hospital tommorrow finally they have been in there since Dec 8,so we are really happy for them that is just about three months I don't know how they did it, that little boy is so strong I hope he has an awesome life after all this God knows they deserve it.Jodi

Wednesday, February 25, 2004 10:51 PM CST

So lastnight I pulled a muscle in my stomach I just got up the wrong way,so that has slowed me down a little bit.It is kind of annoying because I was healing so well.I was still having a bit of discomfort sometimes and swelling but now I must try and rest a little more I guess.Mckayla had a bit of a break down at the U of A today because she did not want to leave there.You know it must be a great place if a child cries because they are leaving.Her bloodwork must have been good today because we did not get a phone call.I asked her today what she wanted to be when she grew up and she said a mailman it was so funny,She used to always say a police lady.When we got home from the hospital McKayla sat and watched t.v for 3 hours which was shocking I was watching her and she didn't know.The reason I was doing this was because she kept laughing and I wanted to see if she was laughing at the funny parts and she was it was so awesome.It is really cool how many words she learns from watching shows she was repeating words they were saying it was great.Anyway I am extra tired tonight so I am going to try and get to bed early.Goodnight Jodi

Monday, February 23, 2004 11:33 PM CST

We have been feeling a little cooped up lately,going to the U of A only once a week has limited our outings.McKayla is doing well the words just keep on coming it is funny though how she picks up everything Cory says.She is putting more words together I know the sentences will come because she sounds like a 2 year old learning to talk it has been one word for so long.So now she is saying "call Papa phone"Which is awesome also we were pulling hashbrowns out of the freezer and she counted to three all on her own.Another thing she was playing by herself and I heard her go "nine,ten".It was so good all that work that Mrs.M,Mrs.Arnold and Mrs.Desmond did with her for two years straight was sinking in because I see the things they taught her in reach coming out more everyday and it is still early.The princess attitude is still there though,not all the time but she sure likes things her way.I know lately by the time she is in bed I am tired, I used to be able to stay up pretty late but I should be back to normal very soon.She found a can of her old formula tonight and wanted some I was shocked I threw it in the garbage,even though it kept her alive for 7 years I never want to see or smell that stuff again,ever!Life is so much easier without it.We are going to be able to stop another one of the medications by Easter so that will be one less she is on about 9 right now.She is on 2 immuno-suppresants,1 anti-fungal,1 anti-biotic,aspirin,iron,magnesium,prednisolone is a steroid,neurontin for seizures(which she has not had any).They will try to get her down to only two meds twice a day,she is taking them three times a day right now,which I have to say is gravy compared to before.Her hair is growing like mad it is going to be so beautiful,I hope to grow it so long.Jodi

Saturday, February 21, 2004 9:01 AM CST

We had such a great day yesterday Mckayla is becoming clearer everyday.Cory said something to her and hurt her feelings he felt so bad she was crying and upset.I though it was amazing though because before she could have cared less.Cory is now being more careful.For anyone who doesn't know McKayla has been in a car seat up until now because she would not sit in a booster without jumping out of the car.Well that car seat is being put away she is sitting like an angel in there.This is so huge for us all these little things.I used to think of McKayla's future and wonder if she would progress ever or remain how she was.I have truly learned the meaning and feeling of hope and how it can impact your life.McKayla may remain delayed for the rest of her life but with that powerful feeling of hope it has changed everything the sky is the limit.Now when I hear someone say there is know hope I will truly understand how sad that really is because there is always hope.I curled McKayla's hair yesterday she looked so cute it is growing like crazy I just looked at her and thought I don't know this beautiful little girl even her face looks different.I go onto the Citrullinemia website still and look at all the postings and I just want to write on there DO THIS get the transplant it is your only chance.As parents with this disorder everyday is a struggle I want them to feel the relief I am feeling.Although my better judgement tells me we all have to come to this decision on our own.I think now with transplant coming so far in the last couple of years that any child born with a urea cycle disorder should be transplanted.There are still doctors out there who don't think it is a good idea they have to re-think this.McKayla is being followed through an international data base which makes me happy people other doctors will be able to see her progress.Well she just woke up!Jodi

Thursday, February 19, 2004 10:34 AM CST

I just get chills up my spine when I read all the nice things everyone puts in the guestbook thank you everyone.Well we had a great day yesterday McKayla got her her t-tube out she likes watching,she had her bloodwork it is all good again.We also saw Dr.Jones I love that man he is such an awesome guy.He said she may have had a little virus that passed and now she is fine all her tests looked awesome he said she has a great liver in her,so we only have to go once a week now which shocked me but he said she is doing so well there is know point coming so much anymore.He would also like to keep her away from the germs there as much as possible.McKayla was really good yesterday I could tell her stomach was a little sore by the way she was walking knowing her it was probably really sore but she never complains she is such a trooper.They just cannot belive how well she is doing.She was really calm yesterday and today so far, so that is great!!!!!She is sitting right now watching her shows and eating two eggs she just loves eggs.This is so awesome!!Jodi

Tuesday, February 17, 2004 12:59 AM CST

We finally got ostomy bags yesterday,what a relief and tommorrow the tube comes out that will be great.So far everything is good it will be interesting to see what the doctors have to say tommorrow.McKayla has been a little more active since coming off the Risperdol but I will do everything in my power to keep her off it.It is still nothing like before,so hopefully things will settle down with her body.She has been singing a lot which is something new, it is really funny.I asked if she wanted to go back to school she can't yet but I wanted to see what she would say, and she said no she wanted to go to the hospital.She loves going to the hospital.I will update tommorrow.Jodi

Sunday, February 15, 2004 5:05 PM CST

Yesterday was a very interesting day we have run of of ostomy bags and trying to get supplies for them is like finding the winning 649 ticket.McKayla now has one taped on her stomach with hockey tape,we would have had enough but she pulled three off yesterday the nurses at the U of A are still trying to track some down.Our next step will be to tape a Walmart bag to her(just joking)I am not sure what we are going to do.So we will have to make a run to the U of A today that is if a small miracle arises.McKayla has been doing well so many new words coming out she loves telling everyone to zip it.Cory has been doing well in his hockey tournament they play in the morning but I will have to leave early because we have to go to the U for bloodwork.Anyway really looking forward to this week.Jodi

Saturday, February 14, 2004 1:33 PM CST

Well I guess so far everything is fine which is great,Mckayla is doing well.Just 4 more days until the drain comes out which will be so awesome.Cory has a hockey tournament this weekend which is good although I am tired.This week we see the surgeons and the G.I doctor so I hope it is all good news.Jodi

Wednesday, February 11, 2004 11:16 PM CST

We went to the hospital today McKayla has turned into a rage-a-holic,which is supposed to be just another normal emotion that should pass.She is happy one minute and mad the next,her new word is gay everything is gay.We were walking down the hall of the hospital and a young man was on the phone and McKayla went up to his face and screamed gay at him lucky he had a good sense of humour because he burst out laughing.I was a little shocked she looked like a little princess and then this burst of anger came out it was pretty crazy.She has an opinion on everything now we could usually sit and enjoy t.v at night but now she thinks all the shows we watch are gay and she should watch cartoons only, which is good it is showing she cares what is going on around her.We are still waiting for news on the tests she had the other day and she has some bruising on her that should not be there so I will talk to the doctor about that I am thinking with her blood being thin she will bruise easier I don't know but I am concerned about it we just noticed this morning.I painted her nails tonight and she sat so nice it is fun doing new things with her that she enjoys to.I could never put anything in her hair before and now she lets me, all the fun things Mom's get to do with there daughters it is really neat.7 more days till the drain comes out I am counting down,she likes to empty it herself and does a pretty good job of it.I slippd over to the mall for a couple of minutes today to return Cory's jacket and McKayla went crazy she is way worse than before for me leaving her I am going to have to do this slowly because I am getting a little stir crazy myself but I don't want to upset her.Anyway I hope to have some news tommorrow.Jodi

Tuesday, February 10, 2004 10:02 AM CST

So McKayla had her biopsy yesterday and she is not rejecting,they think maybe she has a bile duct problem that may require anti-biotics or another surgery we will find out in 2-3 days.I hope it is anti-biotics,so we will see.We got to the hospital at 8:30am yesterday and they were not sure if she would have the biopsy her blood is very thin so they gave her a blood transfusion she was very good.After the biopsy she had to lay still for 2 hours which I though was never going to happen,but she did it was great.She had to lay still because after a biopsy of the liver there is a risk of bleeding from the sight.When the doctor came in we thought we were going to have to stay in but we got to go home at 7:30pm,all with huge smiles on our faces,waiting for news is tough.Mckayla is a little emotional theses days which they say is common after a surgery because it takes a while to heal.The drain she does not like she thinks it is really gross and wants it out her speech is getting better everyday.Everyone is feeeling a little cooped up here but McKayla is not aloud to go anywhere where there are alot of people we have been taking her outside though,and of course to the hospital which always makes me nervous because thats where all the germs are.When we were in admitting yesterday we ran into brooke's family from kindergarten there little baby was having a procedure, it is such a small world.Jason scanned those pictures and e-mailed them to me but he needs to do it again so I will put them on tonight I hope.We will see what the next couple of days bring anyway.Jodi

Saturday, February 7, 2004 9:36 AM CST

So McKayla will be going for a biopsy on Monday morning we have to be there at 8am I guess we will be there all day for sure.Her blood work has been the same all week.She is doing very well though!They just want to see what is going on I am not very worried about this I think they are just being cautious.She is eating like crazy and still enjoying all of her new food choices so I will keep everyone posted on the outcome, her and Cory are still sleeping.Jodi

Wednesday, February 4, 2004 8:42 PM CST

We don't have to go for a biopsy tommorrow they figure McKayla is having a mild rejection but it can be controlled by increasing her meds.The blood work was the same as Wednesday so they say that it is not getting worse which is good, I am feeling really good about it all.The blood work on Friday will give us a better idea.Things are going well otherwise McKayla looks awesome when people see her they cannot believe it, tommorrow will be our 1 month. I was thinking today I would not trade these last two weeks for anything in the world they have been so amazing.Cory's hockey team dropped off a gift card to Walmart and some food there is so much kindness in this world I have not really had a chance to get to know these parent's and none of them have met McKayla which makes it even more speacial.I wanted to also mention a big thank you to my Auntie Thelma who spent hours and nights at the hospital taking care of McKayla and myself for anyone who does not know she is my Mom's sister.My Auntie was there every minute for us,just like my Mom would of been if she was here so it made things so much easier.McKayla is coming up with alot of new words her hair has grown more in the last 4 weeks than it has in 4 years it will be down to her bum by next year if I have anything to say about it.2 more weeks until the drain comes out, that will be great then she can go back to bathing 5 times a day.I am having trouble keeping up with the chicken demand she eats it steady.For today I say life could not get much better than this!I am calling Jason right now to scan those pictures Cassidi and Sheila and Jay came over today they are in there new house Cassidi turned 6 months old and is so cute Maya will be 10 months on the 11th they are my beautiful nieces,time goes so fast.Jodi

Monday, February 2, 2004 7:20 PM CST

Well we have had a weird day today the first half was awesome and the second half pretty scary.We saw Dr.teoh and he could not believe the change in McKayla he said it was like looking at a different kid.His nurse Brenda called him to the waiting room because McKayla was sitting and playing with blocks,she was shocked and so was he.So we are weaning her off the risperadol which was supposedly keeping her calm for the last year I don't really think it worked.What a step in the right direction it was so funny he could not stop grinning.McKayla is so different,we saw Tyler today and he looked good.I got a phone call from the transplant nurse and McKayla's blood work is not good so they will do it again on Wednesday and if it is still not good they will do a biopsy on Thursday to make sure she is not rejecting.If she is rejecting they have ways to stop it but it kind of blew me away because she looks awesome.Mckayla will have to be put under again if this is the case so I am praying, but I am not going to get all excited yet.I will keep everyone posted.Love Jodi(I wish Jason would hurry up with those pictures!!!!!!)

Sunday, February 1, 2004 10:09 AM CST

Jason is scanning the pictures of McKayla and Tyler so I will be able to put them on here,I am going to do that tonight I hope.McKayla is still doing very well and was happy to be on the radio.We are still trying to figure out what she has not tried yet.Her hair is growing like crazy,I will write more tonight.Jodi

Thursday, January 29, 2004 11:21 PM CST

What a day!it was amazing I love the radio-thon I was talking on there today and I realized none of this has really sunk in yet it is strange.It has all happened so fast,McKayla is doing great she loved hearing that hope song on the radio what an honor.Cory is at the Oiler's game tonight he got to sit in the sky box and then meet all the Oiler's after he is going to get an autograph for Tyler.I really know my Mom is looking down on us with a big smile,my Mom's friend Dawn e-mailed me and said being so positive is a great thing that was a gift my Mom gave us,she always said "God will never give you more than you can handle" and "no matter how bad you think you have it there is always someone worse off".Listening to all those stories of sick kid's and dying children I thank my lucky star's. I will treasure each and every minute,life is great at this moment how could I ask for anything more.Goodnight Jodi

Wednesday, January 28, 2004 4:37 PM CST

I just wanted to let everyone know that we will be doing the radio-thon tommorrow,we will be going on 630 ched at 7:35am and on 103.9fm at 8:30am so we have an early day tommorrow.Everything went really well today with the surgeon he said he has never seen anyone recover so fast after donating.I told him how could I not feel good when I look at McKayla I think genetically we are just fast healers.Mckayla's t-tube will come out on Feb 18 so that is awesome I cannot wait.We saw Tyler today he was sleeping but doing better he will still be there for a few more week's.we still have to go to the U of A 3 times a week for the next while.I got to take a stitch out of McKayla's chest today it was pretty funny I thought the doc was gonna do it then he hands me the kit and says Mom look's like she can do it so I did,it was easy.I am so happy.Jodi

Monday, January 26, 2004 11:30 PM CST

Tonight was great McKayla had steak for the first time and I was trying to keep her from running around with Cory but that did not work.She loved steak I cut it up into tiny pieces but she was putting them in there fast.Her blood work was great again today but I was told to expect some set backs in the first three months they said she would experiance infection or rejection.I was told to be nervous when she was first diagnosed with Citrullinemia that the first year would be the hardest, when actually it was our easiest.So I have to say one day at a time and I will handle this just as we did the Citrullinemia.I am still in shock I can't believe the Citrullinemia is gone it is just to hard to believe.Cory came running into the living room tonight and said McKayla is eating meat and my first reaction was uh oh! I had to think about it for a second he thought he was really funny.We have to go see the surgeons on Wednesday,I had blood work on Friday so we will make sure that is all back to normal and then my follow up will be done.They will look at McKayla and see how much longer the t-tube will need to be in.It is so hard to believe that it has already been three weeks since surgery I am feeling pretty good for the most part other than my whole stomach is numb,I am surprised that the recovery was so fast I thought it would take a lot longer.McKayla's balance has been perfect she used to fall at least 20 times a day and I think she has fell once since coming home she is so steady she looks clearer mentally to it is so awesome. We were driving to the hospital today and she said hurry up plain as day I just about had a heart attack.She is sleeping right now in her pink p.j's and her famous pink hat that I have to sneak off her head to wash.She look's like a little angel sometime's I wonder why some kids have to go through so much and other's are blessed with health.I know there is a reason but I guess we will never know.If we are never sick we will never now how great it feel's to be well.I can't complain McKayla has given so much to us I have never felt more blessed to have her or Cory they are really special kid's. Jodi

Monday, January 26, 2004 1:41 PM CST

Well I have to say we have had alot of excitement around here McKayla we think pulled on her t-tube which drains the bile and it came out about and inch but when the docs saw it they said it was o.k so my panic attack was for nothing.It is a different world for us genetics we had such a close relationship with them because there were not as many patients now you have to wait 3 hours just to talk to someone,but I will not complain just something to get used to.McKayla was not to fond of the pizza the other night I don't think she likes cheese.I will write more later.Jodi

Saturday, January 24, 2004 8:55 PM CST

It has been kind of crazy around here lately McKayla has been doing so well she is not napping at all now.McKayla is laughing all the time we thought she was happy before well she is really happy now.I ventured out this evening to Cory's hockey game I am glad I went because it was awesome.McKayla's blood work has been good and she seem's so much clearer mentally her word's are much clearer to.We had to actually trim her bang's which is huge to because she has not had a hair cut in 4 year's.We are going to order a pizza right now because she has not had one yet.I will write some more later and tell how it went because she want's her pizza now!Jodi

Wednesday, January 21, 2004 11:23 PM CST

Just wanted to say we had a great day today,although I was talking to Shannon on the phone and McKayla handed me her ostomy bag she had ripped it off so there was a little excitment she is still way calmer than she was.Today we went for blood work and we went and visited Tyler he is looking way better we got some very cute pictures of them together McKayla is so happy she is laughing all the time her body must feel so much better.I am trying to do nothing and that is very hard but this time is going by fast I will be good as new soon.McKayla is more of a Mama's girl than she was before I went out to start the car this morning and she was shaking she was crying so hard it must of really got to her that I was not there when she first came out of surgery but I am sure she will be o.k.We are home bodies these days so it is almost nice to go to the hospital 3 times a week.Cory and McKayla fell asleep together on the couch tonight it is so cute I have to snap a picture.All the blood work was good again and McKayla still cannot get enough chicken.Goodnight Jodi

Tuesday, January 20, 2004 11:38 PM CST

So tired today McKayla did not nap She is doing so awesome she had the giggles and that got me laughing it hurts to laugh but I could not help it I have never heard her laugh like that before.It reminds me of my Mom's laugh,when my Mom would laugh you could feel it.McKayla loves chicken so much I think that is her favorite so far, she had it for supper again tonight.I love the look of shock that comes across her face when I give it to her.Cory is having fun with it to he was so proud to tell everyone him and McKayla were having milk and ravioli,it is cute.Well we will go to the U of A in the morning again which is kind of good it gets us out of the house.McKayla's new doctor was so impressed with Cory at the hospital he would update the doctor about her all the time.It was really funny if the doctor came in and Cory had a milk in his hand the doc would give Cory a dollar but if he had a pop in his hand Cory would have to give him a dollar so Cory drank a lot of milk when McKayla was in the hospital but I think he also gained ten pounds because he went for breakfast,lunch,and supper with everyone who showed up.It is funny when you get home how comfortable and tired you get I think I did to much this morning because I payed for it all evening so tommorrow less bending.I am happy boy am I ever happy!!!!Goodnight Jodi

Tuesday, January 20, 2004 0:13 AM CST

Home sweet home it is great to be here McKayla is getting better very fast.Tonight she wanted chicken for supper and she loved it.Thanks to Mrs. Westergaurd for sending supper lastnight and cookies for McKayla she loved them.We went back to the hospital today Mckayla was very happy to get out of the house her blood work was good.We got home and changed her ostomy bag which is collects all her bile she thinks it is gross.When Jason and Sheila came over tonight some how she got the bottom of it open and it leaked all over our rug and bile does not come out so we have a little McKayla trail.It is kind of funny how much she is sleeping and I do not even have to worry before that was a sign her ammonia was high now I can just let her rest we had a very long afternoon nap today and she slept through the night lastnight.Her stomach is healing faster than mine the docs say after transplant it takes longer to heal but not for McKayla I guess she seems very calm it is weird.She still laughs all the time though I am just so thankful right now I do not think anything could bring me down from this cloud I am on.I am used to her new meds already I thought it would take longer but it is pretty simple.She has a thing called an I-vad in her chest it is under the skin so you can just see a little square when the nurse did her blood work today out of it she screamed so I felt so bad because Mckayla never screams for needles I don't know about this thing I will be glad when it comes out.We went and saw our friends at the lab because they will not be doing her blood work until the I-vad comes out they are so awesome when McKayla and I were in the hospital they came up to our rooms and visited us I got pictures of them to they are very special people they were so happy to see her looking so good.I took lots of pictures in the hospital still waiting to get them on the website.Gooodnight Jodi

Saturday, January 17, 2004 5:52 PM CST

We are home boy did we ever get a miracle we really did.Thanks Shannon for updating everyone,our next month will be very hectic.We will have to go to the U of A 3 times a week for the next month.McKayla has a bile bag coming out of her stomach that will stay there for 4-6 weeks.I stayed with McKayla at the hospital all last week when she was aware I was not aloud out of her sight for very long now the healing begins.We came home and slept for three hours it was the best sleep I have had in a long time.McKayla will not be able to go back to school for 3 months.Tyler is doing a lot better we got to spend a lot of time with his family they are really great people.It is unreal what some people have to go through I will pray for them every day.McKayla's blood work has all been awesome,I got to see her ultra sound the other day my liver working in her it was really neat.All we have to do now is get Kevin an apron because his work is just starting ha ha!I will write again soon there is lots I have to tell.Happy to be home McKayla is amazing!!!Jodi

Thursday, January 15, 2004 4:53 PM CST

Breaking News- McKayla is scheduled to come home on Saturday. To think, the doctors thought they could keep her down for 3 weeks. She is doing great and is up and walking around often. She is still hooked up to a few things and may go home with some but I will update you after I have spoken to Jodi. McKayla ate a Hot dog and loved all of it except the bun- she has also had chocolate chip cookies and a glass of milk. Everyone is celebrating her successes and it is only the beginning. Jodi is doing great but of course she is not slowing down- Talk to everyone soon.

Tuesday, January 13, 2004 6:33 AM CST

O.K it is 5:43 am and I have some time on my hands so before I hand this back to Shannon I have more to say I always have lots to say!!First of all I was crying my eyes out reading all the guest book entries.I can't figure it out I am working on half a liver and I can't sleep.Kenny slept with McKayla at the hospital last night and now I am waiting for Cory to wake up this is the first time I have not been with her at the hospital I cried.It was hard giving up my control postion with McKayla all this week it is weird having someone else make all the decisions for her that was then though.I am used to being in control I guess I learned her world will not fall apart if I am not here and that is a good feeling.Mothers are so protective.Anyway wow surgery for McKayla was only 4 1/2 hours that is amazing mine was longer she was out of sugery and in the I.C.U before I was out of recovery.I guess it took a while for me to wake up after just because I have never been under before.Then they gave me my own morphine pump really how stupid is that your all drugged up so of course you keep hitting the button to give yourself more.I was very sick for the first few days morphine is a very powerful drug and makes you very sick.I am just on regular tylenol now,McKayla is still on the morphine for a couple more days.We have taken a lot of video and pictures to document McKayla's story she has had her pink hat on for a week now of course.Cory has been in charge of the video when he was filming McKayla going into the o.r the second time he ran into the wall it was pretty funny.Jason is going to try and put a recent photo of her up on the website in her hospital bed.Anyone is welcome to visit as long as they are not sick.Mckayla loves to have people there to hold her hand,I love when she just looks and me and smiles and says Mama my heart melts she looks so good I still cannot believe the Citrullinemia is gone!I have to say though the hospital is a different world people are so kind to eachother there you see so many things that blow your mind all mine and McKayla's nurses were so awesome.I had one who called me Jodi Ann for 2 days straight it was so funny for anyone who does not know my name is Jodi Lynne.This nurse was trying to get Cory to sing Jesus loves me while she took out my staples I was laughing so hard it hurt anyway I have to wake up Cory now and go.I know my Mom is beaming from heaven right now she was at McKayla's bed side so many times when she was sick and I wish she was here now to celebrate with us I miss her.That's all for now I won't have another chance to write for a while so I will keep Shannon up to date.Love Jodi

Monday, January 12, 2004 9:01 PM CST

O.K Shannon my stomach is hurting from what you wrote your funny! I don't have much time I have been discharged all my staples are out McKayla will be coming home as soon as she can eat I will be staying with her at the hospital I am feeling sick tonight so kenny is going to stay, and a little emotional.Tyler and McKayla are in bed's side by side and Matthew from reach joined the crew in there today what a pleasant suprise he had his tonsils out.I am in shock thank you everyone for coming to visit even though I do not remember most of them.Thank you for everyones support Cory is with us for three more days he needs to be with his family right now.I love everyone and when I am not in so much pain will write so much more for now back to Shannon.....

Monday, January 12, 2004 9:16 AM CST

Good Morning Everyone, Mckayla had the smallest set back on Thursday. She had a leak in her bile duct, and had to go in for surgery again. She is doing really good though, her colour is good, and she is trying to talk, which is always good. It's very weird seeing Mckayla lay so still, we are all so used to seeing her full of energy. I'm sure it will not be long untill we are seeing that again. As for Jodi she is doing amazing. When I saw her yesterday she was walking around and on her way to see Mckayla. The doctors were going to do a ultasound on Jodis liver yesterday, we think it's just to make sure everything is going good. Jodi says she feels to good for anything to be wrong. Everyone has been really great, Jodi's aunt stayed the night with Mckayla so Kevin could get some rest. So everyone is taking shifts staying with Mckayla so she never has to be alone. Weather they are long or short shifts, they are very much appreciated.

Sunday, January 11, 2004 10:44 PM CST

I talked to Jodi this evening and McKayla is doing great- Her bloodwork is excellent and they have been feeding her protein through her IV with no problems . They put the drain back in without having to put McKayla out so on Sunday she got out of her room in a wheelchair three times and even walked on her own. She is smiling and laughing- No one would ever know what she has been through this last week- Typical McKayla-a fighter. Jodi, on the other hand had some excitement when the doctors came back with her tests and told her that she may also have a bile duct tear. They took Jodi down for one last ultrasound to check-Jodi was so upset she would rather have jumped off the top of the hospital than go back under the knife. As it turns out, Jodi's ultrasound was fine and they may have gotten Jodi and Mckayla's bloodwork mixed up. Thank god for small miracles- they noticed the mix-up in time.Good news is Jodi had half of her staples removed today and they have given her some FOOD.....Auntie Thelma is staying at the hospital tonight to give Kevin a much needed break. Jodi hopes to be going home on Tuesday -will update everyone when we know.

Saturday, January 10, 2004 12:25 AM CST

I have just spoken to Jodi and McKayla was in the recovery room from the operation at 11:00 last night-The leakage was from a bile duct and all is fixed. The doctor told Jodi that McKayla's liver is working excellent.This morning, McKayla pulled out her tube that is draining the liver and they may have to put her under to reattach but all in all, everybody is doing well.

Friday, January 9, 2004 8:47 PM CST

I just wanted to give everyone an update on Jodi and Mckayla. My sister, Carrie and I were up to see them this afternoon. Jodi knows what day it is today and feels much better. She is walking around and thanks everyone for coming to see her over the last couple of days even if she wasn't very coherent.Jodi is starving and got to have some pudding and a cup of tea for supper-She was taken off the morphine and hopes to be eating solids tomorrow. McKayla is awake and much more alert today and I had the pleasure of seeing a big smile when her mommy walked in her room. She even had some jello and bananas to eat. Both Jodi and McKayla had some tests done this afternoon as there were some small concerns with the doctor. Jodi seems fine and will have another ultrasound tomorrow but there is some concern with McKayla. They are worried about some leakage around the liver and she will be going back into the operating room this evening as soon as the OR comes available. The doctor wants to repair the leakage as soon as possible and make sure everything is OK. This is not a major complication and the doctor says McKayla is doing excellent otherwise. Jodi was talking to the doctor and still in great spirits. We will update all tomorrow after the operation and the doctor has informed us what caused the leakage.

Wednesday, January 7, 2004 9:41 AM CST

Good Morning everyone, you will be happy to hear that everything is still going great. I went to visit Jodi last night, and she is doing really good. She is still very sleepy and a little out of it. It was funny talking to her last night she would be in the middle of a sentance and just fall asleep. (Let's just say she is fealing no pain.) As for Mckayla i didn't get to see her. From the information I got from Jodi she is still doing very well also. We all knew that Mckayla would do well since she is such a strong willed little girl. She is going to be very busy when this is all done since all of us will be taking her out for lunch and dinner dates. So this is all the information I have for now, keep sending your love to our two miracles, and i'll update you soon.

Monday, January 5, 2004 7:15 PM CST

Hurray it's over. Mckayla is doing great. She was out of surgery at 4:30. That is way sooner than expected. Jodi is in her own room now, and still doing well. Shes fealing a little sick, but that is to be expected. So now we all have to play the waiting game. I'll keep you all updated.

Monday, January 5, 2004 6:41 PM CST

Hi everyone I just got off the phone with the hospital and Jodi is in the recovery room. We have not heard anything about Mckayla yet, but as far as we know everything is going well. I know this isn't much but when I hear somthing new I will let you all know. I'm keeping in touch with the family and hospital so it shouldn't be long. Keep them in your thoughts.

Sunday, January 4, 2004 7:21 PM CST

So we are leaving back to the hospital in 2 hours!I am still not nervous just a little hyper McKayla's blood work went well today so Shawna will be putting a update on here tommorrow night!Thank You to everyone.Jodi

Saturday, January 3, 2004 11:19 PM CST

So less then 48 hours away I am not nervous yet so I am thinking maybe I won't get nervous.Just trying to get the house in order which is kind of funny because I was up early cleaned till noon then went out for lunch and came back it looked the same but who cares.McKayla pretty much got to do what she wanted today how could we give her heck today of all days.She looks really good I think she is excited she still thinks we are going to hold hands though which I think is so cute.I asked her what she was gonna eat first after surgery and she said milk.I cannot believe that I made formula for the second last time today I have done that every day for almost seven years.It stinks it is so stinky a person should not have to drink it I get it on my hand and gag I could not imagine having to drink it every day.We had to load McKayla up on calories so she has been drinking pepsi steady and eating tons of junk food so she is pretty hyper but it will help so that is good.Anyway I better get to bed big day tommorrow I have a million things to do.That all folks!!!Jodi

Friday, January 2, 2004 10:43 PM CST

So today we went to the U of A and McKayla had her final blood work her ammonia was 50 which is perfect.We also talked with Mckayla's genetic doc and everything seems to be going as planned.Tyler is doing better he is still in the P.I.C.U but has turned the corner thank God!I will be going into to surgery at 7:20am on Monday morning and McKayla will follow 2 hours later.The broviac will be going in but will come out before we leave the hospital.I can't win them all.They are going to put a different kind in her so that it cannot be pulled out once I talked to Dr.Chan She said she would make sure of that.It is not to bad going into the hospital when it is -25.I am still not nervous so that is good I am really excited.

Friday, January 2, 2004 0:44 AM CST

Well it is late but this is what helps me sleep at night,Happy New year to everyone now that the holidays are over the time is coming quick.I am going to savour every moment until we get into the hospital.I don't like the hospital at all.I want to thank everyone who helped me out with all the appointments babysitting and things Sheila did a lot of that with Cassidi on her hip.Also Brandy and Jill,I want to thank Auntie Gloria and Auntie Thelma for coming with me in the start of this whole process and all my friends and family for all the phone calls and emotional support.(I sound like I just won a grammy or something tee hee).I am very excited for Sunday to come ,time goes so fast I am making lists for the hospital and trying to remember all the buisness I have to take care of before we go in.I will forget something that is just me.The doctors want McKayla to go home with a broviac which is a central line that runs into a main artery in her heart just not gonna happen.Mckayla had one from the time she was 7 days old until she was 7 months thats when I really had to put my nursing skills to good use but I know her and she will just rip it out and boy would that be a bloody mess,pardon the pun!It was kind of funny when I was telling the nurse on the phone who has never met McKayla that this would not be a good idea and she said, but what about her poor little arms because this is where they draw all the blood from.I was like ya I am sure McKayla way rather have something sticking out of her poor little chest for 6 months some people.Anyway when her regular doctor hears he will set them straight.

I have sat up at night for the last 6 years feeding McKayla her formula that she never drank during the day so she did not have to have a g-tube I just
don't think it's right to have something hanging on the outside of your body like that they are a great source of infection anyway that is my rant I am very tired which is good.Gooodnight Jodi

Tuesday, December 30, 2003 11:39 PM CST

Good day today!I went and donated my last unit of blood thank you Jill for babysitting McKayla she loves to hang out with you.My headache went away I was kind of laughing to myself thinking a headache will seem like a breeze after next week.I don't think I told everyone yet but Mckayla and I will have the Mercedes sign on our stomachs after surgery now all we are missing is the Mercedes but we will work on that.I guess we have to go for another appointment on Friday just a last minute check-up and then Sunday we will go in.With McKayla being as active as she is I convinced them to let us come at 8pm instead of noon so that is awesome it gives us more time at home.Cory is happy about bunking in with his Papa he will get spoiled he is coming to the hospital on the day of the surgery he wants to be there he is feeling a lot more comfortable about everything so that makes me feel good.When my Mom was sick my brother Kenny got Cory hooked on french vanilla coffee so I am going to have to control that,or he will be bouncing off the walls!!Tyler is still doing very poorly so if everyone can keep him in there prayers I am going to see him on Sunday night there family is so exhausted I hope they get a New Year miracle because that is what they need right now.I feel so lucky that I have so many people around me for support because there are a lot of people who don't so thanks again.Love Jodi

Monday, December 29, 2003 11:30 PM CST

Hi everyone thank you for all the nice postings in the guest book.Well the nerves have set in I have had a tension headache for the last two days.Cory had hockey tonight so that was a good diversion.McKayla and I were cross matched today to see if she will develope anti-bodies to me,I hope she does not but if she does they deal with it.I woke up this morning and found out that Tyler the little boy who had his transplant on dec 8 his Father donated to him went into liver failure and required another liver transplant they did not think he would make it through the night on Saturday.Once he was listed though he got a liver in 12 hours which I think is amazing.If everyone could just say a little prayer for him and his family he is such a sweet boy and they have been through so much.6 days till our surgery,wow it is coming so fast I am scared and excited I want this week to go very fast.The awesome people at the lab today said they don't think a liver transplant will keep McKayla down they are so good to her they never get the recognition that they deserve.We are going to be on the radio-thon on Jan 29 I will be sure to mention them!Anyway I am going to try and get some rest I just have to get some formula into McKayla and then go to bed goodnight.

Sunday, December 28, 2003 12:30 AM CST

Well 8 more days we go in on the Sunday so we will be in there in a week.McKayla and I will be cross matched tommorrow.Then on Tuesday I will give another unit of blood,I am getting really excited I am not sure when the nerves will set in but we will see.Our Christmas was so awesome.McKayla was so good and Cory was very happy with all his presents.Talk to you soon!

Monday, December 22, 2003 0:08 AM CST

Hello
Well we have two weeks until surgery and we are excited!Christmas will be a good diversion for us.My Christmas shopping is just about done I always do it last minute.We are really going to focus on what is important.Christmas has been hard for our whole family and friends since my Mom died it was her favorite time of year I still find it hard to listen to the Christmas carols.Anyway I had my pre-admission clinc on Friday so I am ready and so is McKayla the only thing I am really nervous about is if I am not there when she wakes up I will be a floor under her.They are planning to keep her sedated for two days so I hope I can be there if I am not she is going to be scared.Kevin will be with her but she is such a Mama's girl! I have been telling her a lot about the operation and she keeps wondering if we are going to hold hands and who will push us in the wheel chairs.I went and visited the family of the boy who had his transplant on Dec 8,it was really good he is so cute he is 11.They will be spending Christmas in there so I will be thinking of them alot.When we go in for surgery my good friend Shawna Welda will be keeping everyone posted,thanks Shawna.I cannot wait!!!!Also for anyone from kindergarten McKayla had Christmas cards and Cory forgot to drop them off so a big thank you to Mrs.Paulina for the awesome calendar and Mrs.Conroy for the beautiful snowflake and the whole class for the cards.Also to Mrs.Arnold who dropped off a card from McKayla's class last year it was so awesome I feel like we have one huge extended family. McKayla gets so excited it is nice to have so many people who care.Love Jodi

Thursday, December 11, 2003 0:45 AM CST

Well I have to say not a very good day for McKayla and I today I think I would have sold her to the gypsies if they would have come along.We were at the U of A for what was supposed to be a 1 hour test and it turned out to be 4,with these kind of tests I usually bring back up with me to help out but we were kind of blind sighted on this one.They did a test called a gfr which tells us if her kidneys are working proper.Well her lungs were doing a fine job.We get into the waiting room and there is 25 people in there she is screaming at the top of her lungs and wants to run away she was scared which I understand people were staring at us like why can't this woman control her child I am used to that.So I just smile and nod and try to keep this 50lb kid from killing me well I look away for a minute and she had my finger in a death grip between her teeth that really hurt and then I started to cry I did not want anyone to see so I kept my face to the wall then I was thinking why on earth do we have to go through all this there must be a good reason,I don't think that very often but I did today.We just usually go along because this is what has become normal for us.When McKayla got into the room she was fine it was needles she had to get and for some reason she does not mind them,but don't try and look in her ears!The nurse had a really hard time getting a vein so all together I think she had about ten needles today her veins are so bad from all the pokes she has had.On the way home I looked at her and thought I have no right to feel sorry for myself when I have have this beautiful angel who has more strength then anyone I ever met,I am blessed to have McKayla ya it is harder sometimes but I really do appreciate the fact that I was chosen to have this speacial child.I am lucky! Many people will never have the chance to feel that appreciation my daughter has cheated death many times in her short life and I think all the time what my life would be like without her and that would be awful.That goes for Cory to I have a real understanding that we as humans are destructable and things can go wrong I have been so close to that.Thats why I can say that I am glad that my daughter is here with me, so that she could almost chew off my finger today.

Tuesday, December 9, 2003 1:17 AM CST

Well I have developed a lot of respect for people who are waiting for an organ it has only been a couple of days and I keep thinking in one minute we could get a call and be on our way to the hospital also it is only 27 days till surgery.I got a call on Monday saying McKayla had to have her kidneys checked which made me really mad because the point of her being put under on Thursday was to get it all done at once so not really happy about that one.I am really praying for the family who got there surgery today.It is so nice having all of my family here right now,it eases a lot of stress.I cannot wait until this is all over for McKayla.Tommorrow I will go and donate my own blood just in case I need it for surgery.

Friday, December 5, 2003 4:09 PM CST

Well McKayla is active on the list there is a chance that a liver could become available before we have surgery.Now everytime the phone rings we will jump.

Thursday, December 4, 2003 0:20 AM CST

Well it has been very crazy around our house poor McKayla on Sunday night she ran into a display at Superstore and cut her cheek open.Then on Monday Morning her hand turned all black and blue and I guess when we were in the hospital on Thursday when her i.v blew all her meds went into the tissue in her hand and the potassium that was in the i.v burned the inside of her hand I feel so bad for her,she has been on tylenol for the pain.McKayla was off the wall and I could not figure out why but that is how she deals with pain she gets really hyper.I am going tommorrow to start donating my own blood fo my surgery in case I need it only 32 more days I cannot wait!

Sunday, November 30, 2003 4:04 AM CST

So I guess McKayla will be going in on Jan 5,2004.That is the last word I have heard.McKayla had her last three tests on Thursday to say the least it was not a good day.McKayla cannot fast for more than 12 hours or her body becomes catabolic,well her i.v would not stay in so she did not get her meds or calories in time at the hospital, so her ammonia went up to 142 normal is 50.Anyway we went home and cut out her protein for 24hrs and is fine now I cannot wait until we do not have to deal with this anymore.

Tuesday, November 25, 2003 1:36 AM CST

We are just waiting to here back on a surgery date it may be December 8th still but not very likely,it could be a little later in December but for sure it will be January 5th.

Friday, November 21, 2003 1:19 AM CST

Well I have to say things could not have gone better with my testing I am a perfect match for McKayla!We are really excited yet very nervous,our life will change so much.I am really excited for Cory to,but he is really nervous and it is starting to show so I am scared for him to.I am glad we have so much support, right now is an emotional roller coaster.It is so awesome to recieve all cards from McKayla's school Jean Vanier she loves getting them.It will be fun when she can go back to school maybe as a different child.I can't wait till she eats her first piece of meat and drinks her first cup of milk!!Wow it is almost to hard to believe.We are going to record her a lot in the hospital and take a lot of pictures this is her story and I cannot wait to tell it to who ever will listen.I just pray everything goes well and I really hope Cory can get through all of this o.k.Cory has been through a lot and I am really glad that we have his hockey to share with him,he is a very strong boy.McKayla had her last two immunizations on Wednesday she does not even flinch when she gets a needle it is almost sad her pain tolerance is way to high for a girl this young.Next Thursday the doctors will put her under to perform some last tests so that will be another full day at the hospital.We have decided to donate McKayla's liver to research the doctors already have mice ready to inject her liver cells into.They say 99.9% of the time the livers they get are to badly damaged to do any research on and McKayla's is healthy except she is missing an enzyme.They will be able to do research on hepatitis C which has never affected us but may help many families in the future and they will be able to figure some things out about Citrullinemia so it is excting that McKayla may help people in the years to come.I will update you soon.Jodi

Wednesday, November 5, 2003 8:25 PM CST

McKayla has a Urea cycle disorder called Citrullinemia it is a genetic disorder caused by a deficiency of one of the enzymes in the Urea cycle,which is resposible for removing ammonia from the blood stream.The treatment of urea cycle disorders consists of balancing dietary protein intake in order that the body recieve the essential amino acids responsible for all growth and development,but not so much protein that excessive ammonia is formed.The protein restriction is used in conjunction with medication.It also includes special amino acid formula's.

Wednesday, November 5, 2003 7:52 PM CST

McKayla has a disorder called Citullinemia,She was diagnosed with this at 5 days of age.McKayla then fought for her life for 5 more days and impressed the doctors with her recovery when they gave her know hope.We prayed hard and our prayers were answered.Citrullinemia is a genetic defect McKayla recieved a defective gene from me and her Father.Life for her has been about hospitals,medications diet restrictions,and seizures,yet anyone who has spent alot of time around her will quickly realize that she is one of the happiest little girls they have ever been around.I myself have learned alot just from being around her she gives me my strength to care for her,how could I ever complain when I have this little girl who makes me laugh at least 30 times everyday.Well things will change for our family in a month,I will donate a portion of my liver to McKayla in the hope that she will be able to live a long healthy life.Gone will be the protein restrictions,worries about high ammonia levels and all the complications that come with it.This is such an exciting time for our family.McKayla still needs 5 more tests done and I have two more.December 8 is our goal date for surgery three years from the day that my Mom and best friend Lynne Phelan passed away she is McKayla's gaurdian angel.I will keep everyone up on what is going on and if anyone has any questions they can feel free to e-mail me please keep us in your prayers.Jodi Phelan(Mother to McKayla 6 years old)

Wednesday, November 5, 2003 6:41 PM CST

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