I dreamed a dream

As a girl I dreamed like most girls of the family, the love, the wedding, and lastly the children.  Never in my wildest dreams did I think that life would be such a ride.  I did what most young women do and that is be crazy in my very early 20's, get married young and start having a family.  I married for the wrong reasons not the right one's.  Now yes I did love my ex however I should have walked away all those years ago when I thought he wasn't ready instead of saying yes.  It has however given me my wonderful little boy whom I would not have imagined the way he is at all.  When he was born I was instantly in love, what a gorgeous baby he was.  2 years later life was shattered with his PH diagnosis. 2 years after that my heart breaks again for him.  In the past year he has changed all his medications as others either didn't work or eventually over time they lost their effectiveness.  Adam is now on our last hope and is maxed out so the little stinker has to behave himself! No more burning through meds, or ph crises allowed!!! We have had a tough couple of months and somehow have weathered the storm.  When I look at him the emotions are so conflicting it can be confusing. I look at him in awe with how well he handling his newest medication which is the Sub Q IV 24 hour infusion of Remodulin which is very painful.  He is such a trooper and somehow can still smile through it all.  I also look at him with heart break and tears behind these eyes, he is in so much pain sometimes.  That boy inspires me because no matter how crappy my day I am not battling a terrible disease that will one day most likely win. How do you not break down and cry when your 4 year old begs you to stay home because strapping him into his car seat hurts both his arms so bad. Soon his arms will settle and life will resume.

Turkey Stock

Ok so yesterday I did a very candid and heavy post about what I truly go through with Peanut.  I have lacked on a few recipe posts so here is one for you, especially my girl Candace.  After a turkey dinner this is how you make a home made turkey stock for soups etc.

Strip the meet of the bone of the turkey carcass the best you can
Get an extremely large pot or slow cooker, put the carcass in and cover it completely in water.  You want it submerged
Cut up 1 large carrot, 2 celery stocks and 1/2 an onion and add to the pot
Add in 1 tablespoon of dried parsley
Bring the water to a boil and then reduce to medium and let it simmer preferably while covered
Stir occasionally and eventually the carcass will fall apart
You want it to cook for a min of 8 hours and if the water gets low you will need to add a little bit more
After a min of 8 hours remove from the heat, allow to cool and then strain into a container or another pot and voila you have home made turkey stock!  You can do this with chicken as well to have chicken stock for home made chicken noodle soup, yum yum yum

The candid life of a PAH Mom

With today being World Pulmonary Hypertension Awareness Day I thought I would take a moment to reflect and let you in on our world.  Adam was diagnosed almost 2 years ago and the progression is starting to be noticeable.  Shortness of breath (SOB) are more prevalent, heart/chest pains 3 times in 2 weeks, the need to rest more often and less desire to play outside with friends because he can't seem to keep up.  I get asked the same question all the time, "Shannon how do you do it?" and my answer is always the same "I don't have a choice I just do".  The fact is I do just do everything I possibly can for Adam, remain solid for him and don't let him see how much I hurt watching him.  Every day I fear him dropping from playing too hard, his heart starting to fail and there is nothing left, transplants and then the day that my son breathes easy when he gets his wings.  Every day I wish he could play sports, run around and be a kid and literally grow up to be anything he wants to be.  Every day after he goes to sleep I hold myself and cry as I am living every parents nightmare and I know the only way the fear will go away is if there is a cure found or one of us passes.  I am not the solid rock so many think I am, inside I am a very broken woman who truly wishes the best for her only child.  I am strong for those around me who can't handle the hurt and I am strong for the one who matters the most, the one fighting the battle and the one that one day I know I will have to let go because his pain and suffering will out way my selfishness and hurt and that is Adam.  With every breath he takes he is my hero, with every day he wakes and smiles my heart melts and every day with him is truly a blessing.  He has taught me to live life each day, don't take anything for granted and love like today will be the last we will ever have.  When you have children you think of their futures, holding grandchildren and one day them having to have the pain of saying good bye to you and the world seems so bright and endless.  When I held Adam when he was 2 weeks old and make a pact with him that it was ok for him to grow up because I will do it again as a Grandma little did I know that I will probably never be blessed with that kind of future.  It breaks my entire heart and rips my soul apart to know that one day I will bury my baby long before his time should end.  Scarily today could be our last together, or tomorrow as things can change that quickly.  I know I know people are hit by cars every day, accidents take many too soon and we never know if tomorrow will come, stop and think of how it would feel to truly know that tomorrow could be your child's last as their heart could literally stop as they play outside with their kids, that pneumonia could lead to an episode that is irreversible and they never come out of ICU, that in order for them to live another child must die to give them lungs and hearts and if one doesn't come soon enough an infection from being hooked up to heart machine pumping blood through their body from the outside takes their last breath or that you run out of options all together and you have to watch them slowly dwindle away until there is nothing.  This is the reality that we live in, those are the fears in my heart and mind and that is what divides my soul into a million pieces.  Our children shouldn't know what a lab looks like for blood work, or have appointments every 3 months to make sure that they aren't getting worse, going under in cath labs, take multiple medications a day, oxygen tanks, central lines to the heart or sub q IV's under their skin just so that they can keep breathing and fighting.  I am one of the lucky one's as Adam does very well and was diagnosed so early but because of that the smallest changes in him seem so drastic.  He is now stage 2 out of 4 stages and if he makes it to 3 we will have a hell of a battle on our hands where even eating will wind him.  This means that on my plate IV meds are in our very very near future and it literally crushes me.  I personally know 2 little girls coping very well and doing great on it so they are my inspiration and teach me a lot when it will come time.  Take the time today to learn more about PAH, talk to Dr's, donate to local organizations and research, have an echo done as the earlier you find out the better your chances of survival are.  I know that when Adam takes his last breath it will not be in vain, his was found so early and so much research and notes are being taken while watching him.  I will never stop fighting until the day I die as it is the least I can do for my boy, my one and only and for all those other parents out there living in fear that each precious moment is their last.

Single Mom vs Single Dad grocery shopping

So I am faaarrrr from perfect.  My house is a disaster to spend time with Adam, get work done and try and do anything else on the side.  Today I noticed a big difference in the sexes when it comes to grocery shopping. I was with Adam picking up one of his medications and a few other odds and ends for the week.  Him and I shopping together consisted of a watermelon, a clamshell of strawberries, green onions, celery, granola bars, sweet chili sauce, milk, fruit cups and a bag of chips.  Adam is asking for more chocolate, toys, etc. and I put my foot down after Easter as we have enough for the rest of the year and he has more than enough crap in this house.  I tripped over enough of it coming home lol.  Look over at the Dad shopping with his little girl, total opposite of Adam and I.  He has a stuffed dog on the belt, she is asking for chocolate and he is grabbing her some, there are boxes of Kraft Dinner and Hamburger Helper, vats of detergent and an endless supply of quick and easy pre made meals.  Now I know that this can go both ways but we looked at each other and laughed because there I was meany mommy not letting Adam have anything but fresh fruit and veggies that are on sale, no toys, not chocolates though we did splurge on a bag of chips.  He was letting her do whatever, everything was pre made and not even a banana was being bagged up.  That poor Dad didn't stand a chance with his little girl and Adam didn't stand a chance with his Mom lol. Now I have Kraft Dinner in my cupboards, we had chicken strips and fries for dinner and have eaten our fair share of Chef Boy R Dee but it sure isn't everything that I buy on a shop.  A very interesting moment of two parents with toddlers pushing to get their way and how each of us responded completely differently.

Entertaining Chili Cheese Dip

When having a gathering of people, wanting a delicious snack, or even having a Super Bowl party this dip is a huge hit!!  It is super simple, does not require many ingredients and will get slurped up.  For those who made the chili recipe I shared and froze the extra's then this is even easier!! Please remember this is not the healthiest though there are things you can do to increase the goodness

1 Container of Frozen Chili thawed out or 1 can of Chili

1 container of softened cream cheese (You can use light if wanted)

2 cups grated cheese (Cheddar)

* You can add any other veggies you think will be yummy like red peppers, tomatoes, green onions to add goodness to the dish* Optional

Tortilla Chips

Heat oven to 350 degrees

Heat up the cream cheese in the microwave so that it is easier to spread.

Spread it along the bottom of a baking dish

Spoon the Chili on top of the Cream Cheese

*Add optional veggies*

Sprinkle the Grated Cheese on top

Pop into the oven until the cheese is melted and serve with Tortilla Chips

Seasons of change

Well of course lots of things have happened in the past month and a bit and adjustments have been difficult yet liberating.  Luckily lately Adam's health has been holding up.  There has been some days here and there with chest pains, crankiness and one with sore legs so I will take it.  I was nervous for his last echo due to him not doing well at all and now that we have changed his medication and he is no longer on Bosenten it is like having a different child.  I am looking forward to his echo this month especially after his Cath in February showed positive changes.  While his health is doing well at the moment his emotions have leveled off from his Dad and I separating.  It has been just over a month since I have separated from my husband and it has been a hard road especially since I made the decision to go our separate ways.  Things have started to adjust here, life is going on a straight road and it feels good.  My heart is lighter and I am moving forward not backwards on my journey.  I have been able to do things that I absolutely love and hear no judgement and the best part is that even if there is I don't care.  It feels good that when certain people try to put me down or make fun of me for the things I love that  it has no affect on my mood or my life.  I am embracing my inner geek, enjoying my time alone, watching ridiculous shows, staying in on weekends and connecting with my son.  I just get to breath, be myself and enjoy my life.  It is literally so hard to put into words how lifted and bright life looks.  There has been a lot of tears to get here, lots of inner questioning and anxiety and now it is nice to just start to let it all go.  Life is to be enjoyed and not wasted and I will do whatever I can to do that.  One thing about being a single Mom is trying to find balance for it all.  Having no family here really makes it hard to balance Momdem and Shannon though I am finding my way even if it is stealing time here and there for an hour at night.  The biggest thing is that I have to accept that I can't do it all and this house does fall apart because time with my boy and time to unwind is soooo important.  Watching Adam grow up so far has been amazing.  To see him counting is great, doing his letters and when he gets upset with something hearing him say Oh for goodness sake makes me laugh every time.  He is such a little adult already, 3 going on 18 that kid.  All I know is that if Adam and I keep travelling this road life will be good no matter the direction it turns in.  Time to look for swimming lessons because he keeps telling me that he is such a good swimmer from the last time we went lol. Watching him pop around in his life jacket makes me laugh still cause there he would be on his back screaming for help and I would have to turn him so he was face first in the water.... and then he would pop back onto his back and scream for help again and I was laughing cause it looked awful if someone didn't know he wanted to kick and blow bubbles hahaha Oh the things kids do, I promise I was not trying to drown him I fight far too hard to keep him alive to give up now :)

Lazy Chicken Leftovers!

Soo this is a new one to me and is beyond super easy.  Not the healthiest due to the sodium content so I recommend following up with a nice fresh fruit dessert.  This is for those days when you are lost and need something quick.

What you need
Left Over Chicken, anything at all
1/2 package of mini New Potatoes
1 package of Onion Soup Mix low sodium
1 large Carrot or a handful of baby carrots
1 cup water

In a baking dish mix the onion soup mix and 1 cup of water and shred the chicken in and mix well.  It doesn't matter how much chicken you use.
Cut up your potatoes, you can add as many as you like, Peanut and I only need 1/2 package
Add to the mixture and stir, do the same with the carrots.
Cover and bake at 375 for 30 mins.  Uncover so that the soup thickens to more of a gravy and your carrots and potatoes are tender.

Time to serve and enjoy :)

Chili Recipe FINALLY

Ok so this is quite late but here it is my Chili Recipe!!  I made this in my crock pot on Sunday and it was soooooo good.

What you will need
1x796ml  large can of Diced Tomatoes
2x 398ml cans of Tomato Sauce
1 can of Maple Beans
1 can Kidney Beans
1 can Black Beans
1 can of Corn
1 Red Pepper chopped into cubes
2 Celery Stalks finely chopped
2 Garlic Cloves pressed
1/2 Onion finely chopped
3 TBSP Brown Sugar
1/2 Tsp Celery Salt
1/2 Tsp Garlic Salt
6 TBSP Chili Powder
12 Mushrooms sliced
3 strips of cooked Bacon chopped up
1lb Grown Beef or Chicken
1tsp oil

Preparation

In a large frying pan brown the ground beef with onions, garlic, oil and a small sprinkle of garlic salt and chili powder for flavoring. Keep warm on a low heat once fully cooked

While the beef is cooking combine all the other ingredients except the bacon in a large pot or slow cooker and stir well.  Turn onto a low-medium heat.  Once the beef/chicken is cooked add to the mixture and cook for approximately 2 hours covered.  Cook uncovered for approximately 30 minutes or until the chili thickens a bit.

Add Chili to bowls and sprinkle the bacon pieces on top.  Chicken or Turkey bacon is very delicious as well. To mix it up add a dollop of sour cream, cheese and then add the bacon.  A side of garlic bread or corn bread finishes it up extremely nice.

Egg Salad with a twist

So I know this was supposed to be posted last night but I ran out of time.  A friend asked that I start slow with some of my own recipes so here ya go with Egg Salad Sandwiches.

Shannon's Egg Salad Sandwiches
3 Eggs (Hard Boiled)
2 Tbsp Mayo or Whipped Dressing
1 Celery stock very finely chopped
1/2 Tbsp Yellow Mustard
Celery Salt to taste
Bread
Cream Cheese

First hard boil your eggs approx 8 mins, cool, peel and slice up into a bowl.
Add your mayo, celery, mustard and celery salt
Toast your bread and spread on a layer of Cream Cheese on one piece of bread leaving the other side with nothing
Add you Egg Salad in between 2 piece of toast.
For fun for the kids slice into fingers or use cookie cutters in fun shapes :)

I like to serve mine with carrot sticks thus you have a lunch with all the food groups then

Changing up my blog

Well since life has changes and the only way to go is up I have a lot of hope, happiness and positive thinking in my heart.  Yes things are still tough  but separations are hard on everyone involved.  I have decided that since things have changed my blog is going to have a new aspect to it.  My Friday nights now I geek it up and have a date night with my son instead of going out so I have decided that after he goes to bed every Friday will be a blog on a recipe I do that is quick and easy that pretty much anyone can do.  I love to cook, have some tricks as I go and I think this will be a fun venture. I will have to actually break out my measuring spoons when I cook, write them down and then share my love in the kitchen with all of you.  I am a single Mom who works so I understand needing things to be quick, still tasty and have healthy aspects.  Not all my recipes will be low in calories.... Some are just too sinful to change around though having them once in a while is a good thing for everyone.  Having restraint and enjoying those things sometimes in life will bring me much joy.  I look forward to feed back, possible requests and hopefully some of you try them and share! I will still discuss my road of life, having this new venture of single hood and being a parent of a child with a chronic illness.  Life lately has been tough but I don't have a heavy heart, my head is held high and I am taking each day one step at a time.  I am having fun with Adam and weekly we will have a small adventure and once a month a bigger one.  It is now that we get to go and have fun, nothing is holding us back and life is right there for the taking. Camping this year here we come, Wish Trip in the end of September beginning of October of this year for Peanut, Calgary Zoo this Summer and hopefully take in Drumhellar as well!  2012 is a year of change and balance and so far it feels pretty good.

Onto the weekend

I am sitting here drinking a glass of wine watching Eat Pray Love again.  Right now in my life if there was no Adam I so would go on an adventure like this as my marriage completely fails.  So my internal question is what kind of adventure and life lessons can I do with Peanut.  Life is going to change drastically from here on out.  Aaron and I have been together for almost 8 years, since we were kids really and married for almost 6 and now we will venture off on our own.  I will still have to be responsible for taking care of Adam, making sure his health is number one as well as everything around me while the other gets to walk or move away.  I have gone into much regarding the failure of things here and I am definitely not innocent in this.  Things have been bad for 3 years and I honestly poured everything I had into this only to then run dry.  I am no longer accepting, trusting, happy, relaxed and welcoming in most aspects of my life and especially to the now ex.  That is a big part of my role and I will have to bear the burden and learn to move on and up from here.  It will be a long time before this ice heart of mine melts and that my walls come down because the only thing I can count on for sure is myself.  With all that has happened my eyes and heart have opened even more to family.  They are truly so important and show so much love.  It is nice to talk to my brother almost every day, see pictures of my niece, talk with my step mom, soon visit with my Dad and still be a part of my in laws life.  2012 is a year of change and reconnecting with what is important to me and family.  Adam needs extra love with everything that he has to go through, when I look at him I see so much light and hope with darkness and fear in the background because his little body is already tested so much.  I will always love Adam, he has always been welcome in my life and will be treasured until the day that him and I can no longer walk this earth together.  Today brought heart ache when you said you never wanted him... you won't spend time with him because you don't care and yet you won't move from this house until YOU are set up with a another new job.... Right now this isn't about us, it is about that precious boy that didn't ask to be born but certainly deserves love.  I will continue to love him with my heart, guide him the best I can and keep my head up through this journey.  We can only go up from here even if this road has a lot of pot holes to deal with first

Times are changing

It is Valentines Day and after spending the evening with my boy I am sitting here alone.  There has been a lot of joy and pain in the past few days that it is amazing that I can continue to hold my head up.  Adam and I were on the news to promote a fantastic event for Children't Wish and then we were apart of the fundraiser as well.  His amazing team Royal Park Realty included us in all the events they could and we had a truly wonderful time.  My heart feels so good seeing people do such amazing things to help a child they have never met.  Our tribe did a great job, raised a ton of money and we are able to have Adam's wish happen this year! The dinner was nice, the entire event was life changing.  That night changed a lot between Aaron and I though.  It was really hard but this weekend we know that we can not stay together.  We are separating as it is not healthy for us to stay together.  The things that have happened are crazy and usually not all of them happen in a marriage, even one of the insane things tends to make a marriage crumble.  It has been 3 years of me pouring my heart and soul into my marriage to have it all taken away and thus things have failed. It is a scary thing to go through as we have been together for almost 8 years going on 6 married. We have a beautiful child  who has major health issue, appointments, medications and needs constant care though is a hyper active turkey too.  I haven't dated in like 8 years and am now in my 30's.... there is a lot to take in and try and deal with and yet I can still go with my head held high.

2012

Well it is 2012 my year of change and moving forward whether or not it hurts and I have to leave those I love behind.  2011 right up until the last minute was one of the worst years of my entire life. It literally could not get any lower.  My marriage was in shambles, New Years Eve brought on even more awful information and my heart couldn't break any further.  Adam wasn't well, low energy, hurting legs, headaches, sensitive ears, cranky, heart pains, blueish hands and feet, shortness of breath and our house was shambles.  January 1, 2012 rolled around and I vowed to make changes, find balance and live life.  If I can't get any lower in my personal life then the only way is up.  If Adam isn't well then we need to live day to it's fullest because you never know, tomorrow could be his last.  With that outlook I go to the gym a couple times a week, 30 mins of a workout does my mind and body wonders and I can confidently make time for myself.  My amazing day time position has increased, I am now recruiting for all positions, we have become very busy and life there is great. My Avon had increased a ton, more reps, more customers and a bit more of a busy life there.  Peanut takes up the rest of my time with either not feeling well, sleeping well or being crazy.  If I can still manage to take in gym time then anyone can.  Baths, tea, wine have all taken a special part in my life and watching movies on Netflix are fitting in to ensuring I am getting time to myself and relax.  We spent a long day at the hospital meeting Adam's new specialist who changed some of his meds as the one was having awful side affects.  Hoping that his blueness goes away, his SOB becomes less and he improves.  He is definitely getting symptoms and with time will progress so each day we need to live life.  He is driving me batty with being over tired all the time, I wanna pull my hair out and create a sleeping bag that velcro's to the wall to make kids go to bed hahaha

Changes

Adam is growing, becoming more independent and such an amazing little man.  He is also vocal, crazy, half monkey like and working on ensuring I go grey.  Such is the life of a toddler to which I am thankful that he is a typical one.  There are some differences for him though, he takes a lot of medications, gets blood work once a month, sees a PH/Cardiologist every 3 months for echo's and ekg's, has had 2 heart cath procedures already with a third this spring, surgery to remove his tonsils and adnoids for his sleep apnea and then emergency surgery when it went wrong and he was bleeding out.  After all this my strong minded little man is a typical toddler.... There are more symptoms than before which is alarming but we knew it was coming.  Adam couldn't remain without symptoms forever... The balancing act of quality of life, typical activities and then invasive treatments is at our doorstep.  How I have all my hair and am not grey is beyond me.  Yes I know I enjoy soaking my hair in pigments and changing it up so that I never see the reality of being 30 however not long ago I was my natural color and was shocked that through all the crap I wasn't a blazing silver Christmas ornament.... This life of mine has not been an easy one, why in the world would I think that having Adam would be an easy venture was beyond me hahaha.  Kids are tough as it is, no ifs ands or buts about it.  The work that goes into loving them, feeding them, clothing them and when they are driving you insane not locking them away until they are 30 or shipping them to a family member in a box takes extreme fortitude.  Now not only do I worry about the normal things of raising a child I have to work to outlive my son.  Every parents nightmare is my reality and tears flow often in this house.  Yes things are good now, Adam runs around, plays, laughs, is absolutely nuts and proudly admits to sticking beads up his nose ending up in the E.R. though I know that this will not last.  There will be limitations and anger that will rise within him and I will need to figure out how to deal with it.  Right now we will enjoy the hot cocoa on our Friday night date nights, popcorn, movies and coming up Christmas, lights, trees, old specials on TV and maybe some eggnog.  All I can do and all that keeps me strong is enjoying the here and the now because down the road it will get bumpy, it will get rough and this way we can look back and smile about how great life truly is when you want to appreciate it.  Adam is a gift in my life as now I treasure every day like tomorrow will be the last and ensure that the quality of life we live is the best we can, even if that means giving up invasive and painful treatments to ensure each day is enjoyable.  Now is the time we enjoy "Adam's Santa" who is apparently bringing him birthday presents and having parties for him...  I want that thought process hahaha

A day

Adam has really taught me a lot over the past year.  Ever since his diagnosis I watch him in awe because he does not let anything slow him down.  His breathing has become heavier as of late but it has not slowed him down.  This tells me the battle is coming but it is not fully here yet.  Earlier this year was rough on him and it is soooo good to see him running around and doing so good.  He has taught me the life is worth living every day, the only ones left hurting are the one's left behind and that there is always hope for the future.  Life has been interesting lately.  Adam has been doing alright, Aaron had lost his job which cause issues but has now recovered and started working at a new job and I have been busy at my amazing job.  It sure has some interesting days of people either showing up an hour early to an interview and expecting to be seen because they showed.... I usually have others scheduled sooo that doesn't work people and I don't recommend it.  Interesting personalities have shown up, some who look like they would waaayyy tooo interesting and really instead of the pink or purple hair, pierced face, torn sneakers with a story and rainbrow bright attire there is no personality there at all.  As someone put it my job is like being the judge of an American Idol yet it's for jobs lol.  We do believe there is a job for everyone out there, though not always through us.  The most interesting part of my job is putting my personal feelings aside and assessing the people I see, they generally don't work with me thus I have to think of everything differently including the dynamic of the job elsewhere.  Needless to say my day is filled with differences all day long.  When I get home it is then filled with Adam!  The crazy, eccentric little boy that is my darling filled with questions.  Yes some days I wish my ears were pencil sharpeners so that I could jam pencils in and not have to listen... however if I really stop and listen it is amazing what he is learning and wanting to learn.

Update on Adam

Well it has been an emotional roller coaster regarding our wonderful son.  Adam has generally been doing really well which gives my heart such a full and happy feeling.  Adam has obviously recovered from his tonsilectomy/Adnoidectomy and has since had 2 echo's that unfortunately show no changes regarding his heart.  We were really hoping that it would make a difference limiting his Obstructive Sleep Apnea and that maybe that was the cause of his disease, or contributing but alas the numbers right now show that isn't the case.  Luckily though things have not worsened just stayed the same.  We have re applied for the inhaled drug that Adam was denied, PHA Canada has spoken with Bayer and they are now trying to get it on a Special list for those who really need this treatment as they have no plans to try and get it approved by Health Canada.  I know a girl in BC got this drug so fingers crossed for Adam he gets it as his other option is to start on IV Medications.  We have just upped his current medications in the hope that it will help as for the first time Adam had some really bad days that had me worried.  I am thinking it is time I get an oxomiter machine to test his levels on days like that to determine if I take him to the hospital for 02 or just lay low.  I am determined to give Adam a typical life that will have hospitals and meds but in all other ways is just another day in the life of a kid.  Health Canada makes me so angry as there are so many other treatments elsewhere in the world that we can't get here that would be beneficial and give children a chance of swimming, normalcy, lack of equipment, tubes, infections, tape and less worry.  Our children are supposed to be getting some of the best treatment in the world and there is so much lacking!  The uncertainty in life makes me cry often as even the idea of a lack of understanding at school makes it hard.  Will Adam be teased for all sorts of medications or as his disease progresses for not being able to do things?  Will teachers understand or will they push him to unsafe levels because it is such a hidden disease.  Will there finally be a treament of the disease in his lifetime or will transplantation be our only true final option?  It is terrifying to think that ultimately in the end replacing his lungs and heart may be the only thing that will allow him into Adulthood.  In every other way Adam is playing, laughing, running, being crazy and finally potty training!  That child has humbeled me in so many ways with always having a smile on his face, wanting to help and pushing through even on those tough days.  I am starting to understand his disease more and more as I connect with more Adults and am now even more understanding to when he whines for no reason or what seems so, his pulmonary cough, his ups and downs in just a day, his sleeplessness, and the crazy "medicine energy" which usually means the next day is going to be a crash.  I was right about how up to 3 weeks after starting a new medication or upping meds makes him a nut bar, apparently that is common.  My now 3 year old is such an amazing child, an inspiring boy and truly the face of how hidden this disease is.  I know as a parent there is always so much uncertainty with their decisions, my hope is that his decisions are what makes life uncertain as opposed to health holding him back.  If my boy has the kindness to now put a bandaid on my forehead to "make me better" from a headache I hope that it continues through life and that he doesn't become juilted with the cards he has been dealt.  If he carries that through his life he will change the way people look at this disease, sick children and give hope to so many that those who have been dealt awful cards can surpass the negativity and embrace the positive.

Contemplating our health care system...

With having a child that has health issues we are literally emersed in Canada's health care system as a way of daily life.  If anyone sees the cracks that crumble in this country is is us, and any other families that have children that have health problems.  I have handled it all with my head held high and been thankful and greatful for what we have and been lucky to be in a city with a world renowed hospital.  Well today that has changed right down to my core.  I sat by when lack of communication cause huge riffs in our family when trying to get Adam's heart surgery planned (which is still on hold atm due to needing more medication to lower his pressures thus making it safer) I was shocked departments all within the same hospital weren't able to communicate with each other, pick up a phone, hell walk down the hall to have a simple conversation.  I was shocked when I found out that out PICU Nurses government funding is so freaking great that they need to buy their OWN pens or pencils to chart our children!  That's right people our Pediatric Intensive Care Unit doens't even supply our Children's nurses with pens or pencils to chart our children's health and progress.  This is the Unit that deal with our Critical Children!!  I dealt with this things and didn't really say too much until now...... There are more things but if I continue on it will take away from a serious issue!! Today our family was informed that Health Canada has denied my baby boy from releasing a life safing drug due to the fact that Bayer will not release it to new patients.  Yup that's right, another kick in the face by the Canadian Government Health sector who apparently it doesn't matter that this will change the life of a toddler who was born with a rare, degenerative, agressive heart disease.  Bayer doesn't want to give my child a reasonably decent life, no instead of providing us with a non invasive treatment they would rather see a central line inserted directly into his heart.  My little man is a very active boy and besides taking 3 heart medication and 2 sleep apnea medications he leads a typical toddler life.  This drug Illoprost would be administered in an inhaled treatment 6 times a day.  Yes that is a bit heavy as he already takes a lot of medicine but it won't hault him from swimming, baths, water parks etc as this other treatment will prevent.  There is another medication that can be taken 4 times inhaled yet thus it is not available in Canada.  So now what the hell do we do?  Give in to a huge drug company who has written off my 3 year old son to make more of a profit?  Who won't give an actual reason as to why they will not provide a non invasive life safing treatment to new PAH patients?  I am hoping that they have a serious change of heart as this little man deserves the world.

Awesome Times

Lately things in our lives have been pretty good.  There are the typical financial stresses, surprise bills, and trying to figure out where we will get the $ to fund Adam's new machine coming and the masks involved.  Other than that it has been amazing.  Adam is talking like no one can believe, he's articulating and seems all around happier.  There has been less nightmares though there are other issues that seem to have arrived there.  In less than a month Adam will be 3 and he seems leaps and bounds ahead of that.  We are building tracks and playing trains, the imagination is outstanding, reading like crazy and doing more crafts!  I am so proud of him, he is such a good kid with a great temperament.  What almost 3 year old likes to go and look at mattresses?!  Mine does, yuppers, he's all about finding himself a bigger bed.  I think I am more bored with it than he is.  Only time will tell what the calm before our storm will entail lol.  All I know is I have a thomas themed B Day to plan with some serious outdoor fun!

Moms Caring 4 Moms: Feelings of uncertainty

Moms Caring 4 Moms: Feelings of uncertainty

Feelings of uncertainty

So we are at another stalemate and not too sure as to what direction we will go in.  After Adam having his tonsils out and all the trouble we had there relaxing in this house hasn't been the easiest.  He's much more mellow yet has a consistent energy level which is so nice to see oh and now he never shuts up lmao.  It's been pretty amazing in that sense.  Watching him and talking to him feels so good because he acts like such a little man.  We had his echo yesterday and everything is generally still the same.  There has not been any changes since his echo when he had his surgery so it wasn't the outcome we were hoping for.  He will be presented at the next cardiological conference in the beginning of May for the opinions of what we do next.  We may not be doing anything but lots more medications though it may not apply to Adam.  Right now he is functioning quite well and his heart is still squeezing well which is the most important thing though there is some more thickening of his heart wall meaning there is more blood flow through the lungs which could pose a problem down the road.  Adam's hole is very big so we won't know how much of an effect it has on his disease until we go in and make the hole smaller with open heart surgery and then we have to cross our fingers that it was the right decision to make in the long term.  The closing of the hole is so dangerous for him it's unreal and they are afraid that putting him on a heart and lung machine during surgery will be even more dangerous because his pulmonary pressures are so shakey so ultimately in the end we have been left with more uncertainty and questions than before.  I don't even know how to feel anymore, I don't know what direction we are going in and I am not sure how much stress I can handle.  This was the first time the Dr and I talked about the fact that people with Adam's disease are at an increased risk to literally just drop dead and that him getting better is more of a dream than a reality.  He will have a lot more medications in the future I'd say and thus far Adam's dream of being a pilot certainly will not be a reality.  Even though I want to have another child I am now torn and leaning towards that not happening.  There is so much stress and uncertainty that I don't know if I would be able to handle bringing another child into this world and always hoping and praying to not be saying goodbye to my first born.  There may be surgeries, there may not, there will be lots more procedures and tears and fears and right now all I can hope is that Adam will remain the same and not get worse.  He's only 2 with an entire life time in front of him and I know in life there are no guarantees especially with where your kids will go in life, with Adam it feels like things are on a string that could literally snap at any time.  Not only do I not know where he will go in life, what he will do I don't even know how long I have with him.  I don't know how long his life will go on for, how "normal" it will be or how many things we will have to hold him back from.  It breaks my heart and makes me want to spend as many moments with him as I can which makes working hard some days.  I love my job which is why I still go and I know how good it is for Adam to go to the dayhome and get away from me lol.  If I had an awful job or dreaded it or saw no future in it I would have left a long time ago to take care of my boy even though it would be soo hard financially.  I am just happy to know that in May we are taking a family weekend trip to Calgary to bring Adam for a Thomas train ride and to play with his buddy.  All I can do and all I do to get through is to cherish the great moments we have and the positive things we can plan and do.  He is my world and there is so much still to do.