CHD awareness month - February

Hey all!

I am happy to announce that out trip along with MANY magical activities are planned and booked for our week at the Wonderful place that is Disney. Monique is VERY excited, as we all are very much looking forward to some fun!

February is CHD awareness month. Before Monique was born I had not a clue what CHD was, I had never seen that acronym in my life. So many people have no idea this condition even exists! Image all the wonderful things that could be done for our children if only more people knew about our children who are born with broken hearts. Even though it is the #1 killer of infants why is it that this condition is not more known, publicized, researched.

When our kids are sick, the flu, a cold... it is NOT just another common illness.
When our kids go to the dentist... it's NOT just a check-up.

:) ...

Welcome 2012

It has been a while since I last posted... most people probably have stopped looking for updates. No news is good news right. Many things have been happening but I didn't feel the need to vent online. A new year means a new beginning and a new outlook on life. I have learned many lessons in 2011.

Life is too short to live for anyone but yourself, your children and your family.
Don't sweat the small stuff.
If your house is a mess it's ok... kids are having fun!
Stand up for what you believe in, make sure you are heard the way you want to be.
Smile.
Love.
Laugh.
Give and receive all the hugs and kisses you can.
Say "I love you" to all the people you love, including yourself.
Don't be embarrassed by who you are or choices you make.

2012 will also bring many new things to the table I am sure.

Monique's wish will be granted this year. We are planning it right now and our week is completely booked! This wish means so much to me. Monique is being granted a wish for all her rough times past and future. But in a way, this wish is a dream come true for me too. I have been there, watching without being able to take any pain away or make any procedure easier.

Watching her experience the joys of a magical place such as Disney will be the highlight of my life. There is nothing more in this world that I want more than for Monique to live life to the fullest without having to worry about her medical condition tying her down. To many, she looks "normal"... and I am sure there are a few people who do not understand. That is ok. I can accept that because they do not see the times when she is not "normal". These times are not for everyone to see. I will proudly post pictures of the times when her face is full of joy, not the times when they are full of pain and fear. These are private times.

If there were any way possible for her not to qualify for this wish that would be ultimate. But that is not the case. So we will take this opportunity to celebrate Monique and her life together as a family so we can look back at them when our lives are not all that much fun.

ox... Faith

busy... questions...

The school year is winding down again. I regret to announce that the planning didn't fall into place for us to go on Monique's wish trip this March break but she is looking forward to going very soon. I will make sure to let you know how everything turns out.

There has been a few changes in life lately which are a little difficult to absorb and explain. Monique now attends the school where I teach. I find this much easier as I can see for myself how her daily routine is going and how she is feeling.

Our last appointment at the Heart centre was o.k. The news we receive is never 100% positive but always optimistic. The measurements for Monique's aorta seem a little large and concerning. Her cardiologist wants an MRI done in the fall in order to get a better look. She had MANY questions this last visit. She watch her echo and asked what all the different parts and sounds were. When she met with her cardiologist he assured her that she should not worry about her heart. She said she did sometimes. She was in the hospital twice this past winter with the flu and chest pains. We spent March break in the hospital.

What will next year bring for Monique? I am unsure! I don't know. I wish I did. I wish I could tell her she never has to go through so much pain again. But I can't. As a mother it tears me apart. I feel as if I did something wrong to cause her to have to live this life. She does not know ay other life. But I know the difference. This is not the life you want your children to have. Parents who do not have sick children like we do say they understand but, they don't. I can appreciate them trying to imagine what it would be like. But nobody understands quite like other CHD parents.

PLANNING!!

Hi everyone...

No news is good news right? It has been a while so i thought I would post a little update. Christmas was fabulous as was New Years. We spent it surrounded by friends and family which we love. It was wonderful!

Monique is doing great. She is growing and is now SUPER excited for her wish trip to Disney. She talks about it ALL the time now. Her mère mère got her the barbie glamour jet plane for Christmas and she has gotten over her fear of getting on an airplane. Now it's all she talks about.

Before I continue planning however, I have to sit and wait for her passport to arrive. I wasn't pressed for time with her passport because she didn't want to go yet. But since she has gotten over her fear of getting on a plane she wants to go March break. I am hoping it is not too late to plan once I get her passport. It will be a shame if we cannot go because of that technicality! So for now I am researching all the fun stuff we will do.

Monique wants to see a Cirque du Soleil show, meet princesses, see animals, see Cinderella's castle, Minnie and Mickey, Buzz Lightyear... (she loves the Toy Story 3 movie!!)... but the big things are the princesses. She loves them... especially Rapunzel and Tink! I cannot wait to see her eyes looking at all the magical things there. - I am excited too, I have always wanted to go to Disney. But this trip is about her and what she wants to do... so, maybe someday I will go as an adult trip and do all of the adult fun things there too!

November

Hi everyone... things are still going well. I thought I would share a few pictures with you. Monique is still loving hockey! I am so glad because I love bringing her and watching her on the ice.

Christmas is coming... she has a very long list as do most children. I just hope we are all healthy and happy.

October

Hi everyone,

Monique check-up went well. We are hoping to get another few years out of her last repair. keeping my fingers crossed.

School is going well and she is learning well. She loves her new glasses.

Monique is an active little girl. She has many activities which keep her going. She does Jazz dancing, girl's hockey and swimming. I want her to be involved with as much as she can now in case she cannot later in life. I want her to have all the experiences she needs in order to heal after the next surgery; to give her something to looks forward to after she has healed.

Another school year has begun

Hi everyone... I have not posted lately because we have been so busy. We camped all summer. Monique really enjoyed the outdoors! She started the second grade this year. She is getting so big. She also got glasses. Wait til you see... they are adorable. She looks so distinguished.
Monique has a cardio check-up at the end of September. I am really hoping it goes well. Keeping my fingers crossed.

Tea Party

What an amazing event! Monique had so much fun. She looked like a little Snow White. The events consisted of tea, cupcakes, singing, magic show, ballerinas, hip hop dancers and a belly dancer. Then there were arts and crafts and a ballon guy making balloon animals for the kids. Monique was the centre of attention... she will never forget the event I am sure of it.

The highlight of the day was seeing her face when she saw the Disney Princesses. Her face froze. Her feet froze... she squeezed my hand tight... "mom... look!" Too precious! Tink was her favourite!

Here are a few pictures...

Easter

Here come Peter Cottontail...

So Easter falls on my birthday for the 1st time this year. I think it's kinda cool.

Monique has been fabulous!! She is super excited for the princess tea party the Children's wish foundation is organizing as a fundraiser. She is super excited to wear her Snow White costume and is a beauty in it!! As you can see!

She wants a pink iPod for Easter... she is growing up fast and wants all the new 'cool' toys that come along with knowing they exist i guess...

Happy Easter to all!

Update!

Hey everyone!
Monique went for a check-up this week. Her cardiologist said that he was happy with what he saw on echo however her aortic valve is leaking a little. He said that it was because they had to tighten her valve so much to repair it, that it made the opening smaller, therefore there is more pressure going through that smaller space.

There is no way to predict how long the repair will last and she must be watched for signs of failure always just in case it lets go. It could be months or years.

Monique got her Sleeping beauty dress for the Princess Tea party. She is going to a photo shoot in her dress for the program. She is excited and the dress is beautiful and fits her perfectly!

Princess for a day

Hi everyone... I would like to take this opportunity to thank you all for following my blog. It warms my heart when you can stop me and mention it, to know that so many people care and are rooting for Monique is amazing.

Monique is back in school full time. She has also started at a new babysitters. She is doing amazing.

Monique has been invited to be an honorary Princess at the 1st annual Princess Tea Party at a local hotel on April 18th. This is a fundraiser for Children's Wish. She will be presented as a wish child at the event. I have also been invited to speak as a wish parent. It will be an amazing experience for all of us. :)

School

Monique started school this week. She went for a few hours yesterday morning. She would not let me leave though! Which was so completely OK. She took the bus this morning and went to school until noon all by herself. She was excited and I could tell a little nervous too. I think she did fine though. When I picked her up she was happy so... she is tired though. I am planning on sending her for a full day tomorrow and see how she copes. I am hoping it will be fine. I have to go back to work.

Monique's incision is all healed! Looks beautiful. She is so proud. She only has pain when she hick-ups or sneezes. She is hesitant to cough too. We go in for her post-op check-up on March 15th.

Healing

The healing process is well on it's way. Monique's incision stitch tape is all off. Her scar is a little raised right now but it is new (well new old scar) it will go down. She is having a little trouble with the top stitch. It has not dissolved yet and surrounded by red so... I am bringing her in to see our family physician tomorrow. She was a little nervous going to bed about the whole thing but I think she will do great.

Tomorrow is my mother's birthday. We are bringing her out for supper. Monique was slightly excited to be going out in public. She looked at me with a puzzled look on her face and was all like... it's ok? but i can't... Poor thing.

As I was talking to mom tonight. I realized I had completely forgotten Monique's other grandmother's birthday (Mique's father's mother). I have never forgotten before, in the whole 11 years I have known her. I feel super bad, so I invited her too.

The plan is to bring Mique to school Friday afternoon for their Valentine's day party. I hope all will be ok. I am staying with her though. We went to pick up work yesterday at school and she was very shy, didn't talk much. She did show her incision scar to all her friends though. Right up with the shirt. Sorry to all those parents who would rather not their children to have seen that. She is proud of her battle scar. It is the reason she is alive.

Energy

Just a little note to let you all know that Monique is still doing fantastic. One of her stitch tape strips fell off and she was slightly excited! Her incision looks fantastic, a little raised but not dark at all. I did end up taking her to the pediatrician to get checked out. He was pleased and said that all was still ok.

I talked to her about wishes the other day. We talked about Disney, the Princesses, airplanes. She said her number one wish was to have wings. She wants wings! She wants to be able to fly. That wish scares me and amazes me all in one bundle.

She is getting her energy back although she is stil my little cuddle bunny. I love it! I am hoping to get her caught up on schoolwork this week. She will be starting school on the 15th. The day after Valentine's day.

A note to you all that this week is CHD awareness week. All week. Feb. 14th is not only Valentine's day but it is also CHD awareness day. This birth defect is the #1 birth defect that our children are born with yet it is one of the least funded research in our country. How is that? Not enough people are aware that this problem exists. Please, be aware.

Our heart warriors are heros!

Pale

Well... slow day number one. I think Monique has been overdoing it. Today, after 2 days of no naps, she was pale all day, only nibbled for breakfast and lunch, and slept for two hours this afternoon. I am now going to make her have a little nap after lunch so she does not overdo it again. Hopefully she will have a better day tomorrow. Not that today was a bad day.

Much cuddles

Monique is still doing amazing! Her incision is healing well and will be only a scar soon. A reminder of another milestone... and another little miracle.

For right now... I am soaking up the cuddles. Monique wants to cuddle all day long and must be entertained. She has changed a little bit.. I wonder how much she will change back. She randomly tells me now that she loves me which I adore. I don't know how long the cuddles will ast so I am soaking them all in... I will never refuse cuddles! (Ok... some housework has te be done!)

I figure I will bring her into school for half a day next friday and she will start half days for a few days starting Feb. 15th.. the day after Valentine's day. I showed her the day she will be going back to school the day after where the heart is on the calendar. She is excited. I am petrified!!

Now, I have to tell myself she will be ok. She will not have a big bump that will shatter her new forming sternum. Life cannot stop.

I have to go back to work ... I am thouroughly enjoying being a mom and I have very much enjoyed being nothing but a mom... I have never been that. I have always either been in school or worked along with being a mom. Even when Monique was an infant, when others have maternity leave, I was in University. I have learned so much about myself and about Monique these past few weeks.

HOME!

We were able to play in the play room yesterday morning to pass the time while we waited for Moniques travel meds. While we were there Monique received "Josh", a golden retriever teddy from students of the PEI vet college. He came with a story book about his journey with an operation. Monique loves it. Here is a link to the website http://www.joshandfriends.com/


Once we had the meds and Monique took Tylenol for the ride we headed home. Monique slept for half the 3-hour car ride. We made it home. YAY! It felt so good to walk through that door. We were all able to relax a little bit. We had a few visitors bring the balloons and toys they brought home for us on Sunday.

Now we stay home for 2 weeks until Monique heals a litte more and gradually introduce her to life after that. I am so afraid of sending her back to school!

Sunday

Hi everyone!

We are heading home tomorrow!! Yay! I.V. came out this afternoon. No more tubes, no more bandaids!

Monique's hospital journey will be over tomorrow but her healing has just begun. I think it will be a challenge over the next few weeks to get her to slow down and heal. For those of you who know her she is always flat out! She is 6. She does not realize the seriousness and fragility of her condition.

Keep praying... keep reading... I will keep posting! Thank you to all who have done so so far.

Oh... Jon made it up finally last night! YAY... I think I got the biggest, best hug ever! He is a sight for sore eyes. Nobody quite understands or supports me like he does. ox

I will let you know tomorrow night how our adventure home was.

Saturday morning

Wow... big sleeps last night. Monique only woke up at 8:15am this morning. She says her belly hurts but I think this morning it may be the incision that hurts more. She says she doesn't want to bowl and already had a drink of water... I am keeping my fingers crossed.

I went to the grocery store last night and picked her up some fruit loops... he he he ... she is excited to have them for breakfast. Although she is really calm this morning. She doesn't want to move a whole lot. (That is the reason why I think her incision is sore.)

I dreamt last night that they discharged Monique today. I had a panic attack in my dream and woke up with a nasty headache and I am sure my heart rate was way above what it should be.

Friday night

Hi ... Monique had a good day today once she stopped throwing up. We had visitors who brought lots of treats which made the day pass fast for Monique.

I have to say a special thank you to all the MacDonald Chisolm gang! Monique very much loved her surprises.

Monique had a good nap this afternoon... from 3:30 to 5:30!! All the afternoon excitement made her quite tired... me too, I slept as well as her.

Jon was not able to make it up today... hopefully tomorrow. I need him, more than I think he realizes it. I had a tired and feeling sick day today. Quite emotional too. I am afraid to go home as well. everything Monique could possibly need is here and accessible quickly. I know they won't send her home until she is ready but still...

Anyhow... goodnight. Let's pray for a puke-free morning!!

ox Faith