Tuesday, December 14, 2010

Moving Forwards

Cayden did not end up getting his scheduled bronch and endoscopy early December.  Around the evening of the 20th of November, Cayden came down quickly with all the symptoms of a cold...and it hit him hard!  By Monday, Cayden couldn't sleep at night because of fits of coughing and he had lost his appetite.  He also lost his energy and was super lethargic.  I was debating on whether to call the clinic or not thinking that maybe we should give him a chance to beat it on his own.  I ended up calling them, and got a call back saying that he should be asessed by a respirologist.  Because of his bronchoscopy coming up in a week, they really didn't want Cayden being on antibiotics, because then it would have to be cancelled.  I left work quickly and got Cayden to the clinic.  I didn't even grab him food...I thought we would just be seen and then sent home.

Cayden was seen by the Respirologist and they were quite concerned by his croupy cough.  Croup is pretty common with infants, but combined with Cayden's tracheomalacia and stenosis (narrowed and weak trachea), it actually is very dangerous for him.  Because of this, they wanted to admit him to give him some steroids to try and open everything up a bit.  First they wanted to try and suction his lungs to get some of the mucous out so hopefully he could breathe a little better.  They would also be able to culture it and try and see what bug was in his lungs. That was the hardest thing I have ever had to see.   Cayden was completely traumatized after that.  He was shaking all over and started crying and getting panicked everytime the door would open.  He just had this look of defeat in his eyes after.  It was so heartbreaking.

We got settled into our room and were just awaiting orders for the nurses.  Cayden wouldn't let anyone get near him to listen to his chest or to do vitals.  It was a fight to get any of that done.  We met with physio and they tried to do some CPT but of course he screamed when they got close.  It probably didn't help that we were on isolation so everyone coming in had yellow gowns and masks on.  The Physiotherapist said it wasn't good for him to cry so hard, because it was probably making things more inflammed so I ended up doing the physio that night and we would try again next time.   In the hospital, CF'ers get physiotherapy every 4 hours, so I was hoping he would relax a little for the next one.

Because I wasn't prepared for a stay, we had nothing! I had to run out and buy some pj's for us and bottles and milk for Cayden to drink.  I also had to buy some toys because he was not allowed out of his room due to the isolation.  It was a little crazy!  I think I will always bring an overnight bag just in case now.

The steroids seemed to really help and Cayden got some energy to play a little.  The next morning we tried doing nebs and the nurse insisted on doing it and that just set Cayden off.  He rarely cries anymore during nebs at home but this time, I don't think he really inhaled any medicine.  After that, physio tried to pat him again but of course, he wouldn't let them.  The physiotherapist did start with a neat move I had never seen before though, he put both hands on Cayden's chest and kind of tensed up his arms and vibrated him.  Cayden coughed so much during that.  It was really cool and I would actually love to learn to do that.

By the time the Doctor saw us, I had gotten new that we would probably be sent home due to overcrowding.  THey sent us home with some more steroids to keep on hand and that was about it.  I left feeling like it was kind of a useless stay.  All that stress! 

Because Cayden was so sick, and his bronchial tubes were so inflammed, it was decided to post-pone the bronchoscopy.  If we went ahead with it, we would risk irritating his lungs even more.  We are at clinic next week, and will set the date for early January. The clinic called last friday to follow up on his cough, and he was still the same so they prescribed him some antibiotics.  That night he slept really well and started getting better so I am pretty sure it wasn't the antibiotics that helped.  Oh, and Cayden's culture from the suction only came back with Rhinovirus, which is a pretty common cold.  I hope all of his colds will not be like this...It will have been 3 weeks of sleepless nights and yuckyness. Cayden just lost his cough this past weekend and seems back to normal now!  Thank goodness....we were beginning to get cabin fever around here. 

So that's where we are at this point.  Now that we are private, I am hoping to be able to post more and with more details too. 

Hopefully this all made sense!   

Sunday, December 5, 2010

Going Private

I orginally started sharing our journey with CF to help keep our family and friends updated on Cayden. Then, I began to meet other CFers and CF moms.  It became a great outlet for advice and hope into Cayden's future.

I also knew that everything we put on here is available to anyone.  I tried my best to keep names of hospitals and Doctors out of it, to try and keep a little bit private.  I did not realize the types of creeps out there, ones who like pictures of babies in diapers, etc.  I am disgusted. 

I hoped that sharing our story might help other new moms of CF but unfortunatly it has attracted some of the scum of the earth.  

Lately I have received some creepy calls and friend requests on facebook.  So, in order to protect my family and give Cayden some privacy, I will be making this blog private in a week. If you would still like to read our blog, leave me your email and who you are and I will add you to the reading list. 

Thank you to everyone who has shared positively in Cayden's journey this far.

Once the blog is private I will be updating a little more.

I know that it is a pain in the butt to read private blogs, but I hope you will keep reading.

Friday, November 12, 2010

Update

Cayden visited his CF team this past week mostly for us to sign some paperwork before Cayden's upcoming bronchoscopy and endoscopy.  Cayden is doing really well--gaining weight and is super active.

Cayden has had a bronchoscopy before when he was only 5 days old.  With that, he was diagnosed with Tracheomalacia and Subglottic Stenosis.
The reason we are doing a bronch this time is because Cayden has been on antibiotics for 2 weeks of every month of life.  That is just too much.  The bigger problem is that the antibiotics do not seem to do the trick.  Cayden's symptoms go away for a couple of weeks and then return again full force.  All of Cayden's throat swabs have not cultured any abnormal growths so it is suspected that the bug is deeper into his lungs where a throat swab cannot get to.  Because Cayden is so young, he is not able to adequatly cough a suitable sputum sample that could tell us what is going on so that is where the bronch comes in. 

In a brochoscopy, Cayden's doctor will thread a bronchoscope through Cayden's mouth and down into the bronchial tubes.  From there, they look around to see if there are areas of inflammation or infection.  They also will flush the lung with saline and then suck some of it back up (called lavage).  This will be sent to the lab to be cultured.  Some of the lavage will also be used in a study going on through the university.  The study is looking at the live cells under a special microscope in young cystic fibrosis patients. Cayden will be put under during this procedure.

Here is a youtube video if you are interested:




Either before or after the bronchoscopy, and while he is still asleep, Cayden will have another procedure called an endoscopy.  In this procedure, Cayden's GI doctor will use an endoscope to look at Cayden's esophagus, stomach, and his duodenum.  The Doctor will also take small tissue biopsies of the esophagus, stomach and duodenum.  The GI specialist has added this exam on to the bronch because Cayden has had some trouble in the past with bacterial overgrowth and reflux so we feel that it will be a good opportunity to get another test done while Cayden is sleeping as to aviod Cayden being put under twice.

Here is an animation of an endoscopy being done:



While Cayders is out, they will also repeat some bloodwork that needs to be done fasting, which is great...I kind of feel like we are killing 3 birds with one stone!

Both procedures are pretty routine; however it is still hard to make the decision to do these things to Cayden.  There are risks, mainly the anesthesia but we believe that it will be the right thing to do and hopefully we can find out exactly which bug is in Cayden's lung (if any!) and then move forward! 

Tuesday, October 26, 2010

Happy Birthday Cayden!

Cayden turned one on October 10th! 

Being born on the10th means that Cayden's birthday will almost always fall on Canadian Thanksgiving weekend.  Daddy had to work so we had a little celebration at Thanksgiving Dinner with my parents and brother.  We didn't do much other than cake but I don't think Cayden cared!  Being the organized mom that I am, 15 minutes before the grocery store closes the night befor the party I decide that I should make a cake for Cayden.  This cake in fact.    First task-buying ripe bananas.  I found out that it is near impossible to buy a ripe banana!  Next task:  realizing I don't have enough round cake pans.  I had to get creative to make the "smash" cake.  3 hours later, I had baked, cooled, carved, and put a crumb coat on the cakes!  What was I thinking?  :)

Here are the "masterpieces"
One two layer monkey cake with chocolate buttercream icing and one "smash" cake for the birthday boy:



Once Cayden got into it I think he really liked it, especially once the sugar hit his bloodstream!





 {I swear my kid wears clothes}


We had a big party the next weekend with lots of family and Daddy!  Cayden was absolutley worn out after, and he crashed at 6pm only to wake at 1am ready to play!  It was safe to say that it was the worst night in the history of Cayden!  :)  We were driving around the town at 3 trying desperatly to get him to sleep!


I couldn't help but reflect back on this past year. And and what a year it has been!  It has been heartbreaking, exhausting, wonderful, and amazing.  Cayden has changed and grown and so have we.  

We have come a long way from the new parents sitting in the doctors office hearing those terrifying, gut-wrenching words for the first time.  We have learned so much about CF and about what really matters most.  No longer am I focusing on the "why did this happen to me/Cayden..." but thinking "why not us?" and "why not Cayden?" 

I am trying not to worry about the challenges that we will have to face in the future, but trying to live in the now and remember that whatever comes Cayden's way, we will face it together.

We are truely enjoying Cayden for the clever, big hearted, beautiful soul he is.  We have learned that family is more important than anything and so is love.  Lots of people call Cayden "my Cayden" and I don't mind!  I want Cayden to have so, so much love in his life. 

We are so grateful to the family and friends who we have come to rely on this past year.  I am also so grateful for the Online CF community for the advice, insight and hope.  You have all made such a difference in our lives.   

We are so blessed to have you Cayden. We love you forver and ever! Happy Birthday!




Saturday, October 16, 2010

My Family

Just wanted to share the link to the slideshow from our family photos this year.

We are busy celebrating Cayden's 1st (first?!!) birthday with a family party last week and a big family party tomorrow.   One big birthday post to come!

Hopefully I can update about Cayden's latest clinic visit on the 5th and some things that are happening there.

We are also busy enjoying the last days of fall before the snow comes (although we had some yesterday), running after Cayden (he is walking now!), and just spending lots of time together as a family.

{Our little monkey and his monkey cake)


Lots of love 

Wednesday, September 22, 2010

Research, Hope and Change--Canadian CF Mom

Michelle is a fellow blogging Canadian CF Mommy.  She is the Mom to Elina, a 1 year old girl with cystic fibrosis.  She recently blogged about an opportunity she had to visit Innovotech in Edmonton. I will let Michelle's post explain.

Please read the following blog post (direct link:CanadianCFmom ) and I encourage you to write to your local MLA requesting that the bioFilm PA test be covered by Alberta Health plans--I have.  I also encourage you to visit Innovotechs website to learn more.


Research, Hope and Change

Last week I had the pleasure of having lunch with Amanda Stadel from Innovotech. We had a wonderful lunch chatting about the CF community in general, Elina and what it is like for me to be a CF parent. Hope is what drives me forward each day. I am so pleased to have a biotechnology firm in Edmonton that not only has taken an interest in helping to control a common infection in CF lungs called Pseudomonas Aeruginosa but also in personally getting to know our family and other CF families in the Edmonton area.


My mom, me, my dad and my aunt at Innovotech

Remarkably, this was not my first meeting with Innovotech, a few months ago I had the amazing opportunity to be invited to their offices. What they do is very technical so I’ll do my best to explain it – but if you’d like more information I suggest you defer to their website. I’d also like to point out that in no way am I providing medical advice or attempting to provide a medical opinion. I write this so that the people who love Elina can find hope and so that anyone else with CF reading our blog can share in our hope and celebrate the success that happens every day thanks to research and medical advances.
All that being said, Innovotech invited us to visit with them and learn more about a test they use to better predict what antibiotic or antibiotic combination will be best at killing Pseudomonas Aeruginosa (PA), which is a common complication and is “associated with severe lung infections in people with CF. It can be difficult to treat, and is becoming increasingly resistant to antibiotics.”[i] The test is specific to each patient and further specific to each infection that patient might have.
Damian (Innovotech), my mom, my dad, my aunt, me and Ken Boutilier (Innovotech)

Biofilms, as described to us by Damian at Innovotech, are like the green slime that cover rocks in a river. They are bacteria that cling together and are much harder to fight than a free-floating bacteria. Susceptibility tests (throat swabs) are designed to work on free-floating bacteria. Innovotech has designed a susceptibility test for biofilm infections. “Biofilm infections can be 1000 times more resistant to antibiotics than conventional infections.”[ii] When a patient is treated with antibiotics and it is not the right antibiotic to fully kill that infection it can lead to resistance. The test developed by Innovotech, bioFILM PATM, can help to guide doctors to the right antibiotics to treat biofilm infections.
We have all heard of antibiotic resistance and the concerns that it creates in our healthcare system. This is an even greater concern for CF patients as they face chronic lung infections. For the most part these lung infections are treated with antibiotics. Once the antibiotics stop working options for CF patients start to run out. In Elina’s first year of life she already was on two courses of antibiotics for very minor Staphylococcus Aureus infections.
While right now Innovotech is using this technology primarily for CF patients, it may provide many other important roles in the future. For us it was a good visit and one that helped us to feel more empowered as Elina’s health advocates by giving us the knowledge that should Elina ever culture PA we can ask her doctor if this test would be right for her. Right now the bioFILM PA™ test is not covered through healthcare, Provincial Health Plan, or Blue Cross. The cost of $450 is the responsibility of the patient. Please click through to Innovotech’s blog to read more about their bioFILM PA™ test.
I can’t say how much it meant to me to be invited into their lab and for the staff at Innovotech to take the time to talk to us about their work. I feel so grateful that there are people who are fighting for the future of all CF patients.


If you’d like to see this test become a standard for patient care and the cost be covered/reimbursable through Alberta Health Plans please contact your MLA. Let them know how you heard about bioFILM PA™; tell them how important you feel this test could be to your future care or the future care of someone you love. If you are comfortable discuss how CF has impacted your life and the costs that are already involved for a family that is living with CF. Help make a positive change for the future of CF care in Alberta.

Please write to:


Honourable Gene Zwozdesky (PC)

Minister of Health and Wellness

Legislature Office

#208 Legislature Building

10800 97 Avenue

Edmonton, AB

Canada T5K 2B6



Constituency Office

8207 Argyll Road

Edmonton, AB

Canada T6C 4B2

edmonton.millcreek@assembly.ab.ca



Dr. Stephen Duckett

President & Chief Executive Officer, Alberta Health Services

700 Manulife Place

10180-101 Street

Edmonton, AB T5J 3S4

stephen.duckett@albertahealthservices.ca





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

[i] (Canadian Cystic Fibrosis Foundation 2009 )



[ii] (Innovotech 2009)



Canadian Cystic Fibrosis Foundation. A New Approach to Treating Infection. 09 29, 2009 . http://www.cysticfibrosis.ca/en/research/ANewApproachtoTreatingInfection.php (accessed 09 7, 2010).



Innovotech. bioFILM PATM first test to help in fight against serious lung infections. 07 28, 2009. http://www.cf-test.ca/?p=13 (accessed 09 7, 2010).




Reposted with permission.

Sunday, September 12, 2010

Wash Your Hands



Since Cayden's birth, we have had two requests from our friends and family:

1. Please refrain from visiting our sweet Cayden when feeling ill.
2. Everyone must wash their hands before touching him either with soap and water or hand sanitizer.

These requests are not meant to offend, only to protect Cayden's health and keep him well. Simple, right?

Most everyone has been really supportive about this, calling when they or their kids are sick, washing hands, etc.  Cayden is blessed to have so many people who work hard to keep him healthy.

Sadly, a few people still seem to have issues with this. 

I wonder if it is because they choose not to understand Cystic Fibrosis or if it is because they see Cayden is thriving so it doesn't matter anymore.  Is it because they are offended by us asking to wash hands?  Do they just simply not care?  I really do not know. 

It is simply disrespectful to myself as Cayden's primary caregiver and to baby Cayden himself.  Phil and I work so hard to keep Cayden looking as healthy as he is.  Cayden has endured more than most adults do in a lifetime and he is only 11 months old. He is just an innocent baby. 

If you cannot respect his health then we cannot possibly be surrounding him with the most loving and positive environment to thrive in.

We want Cayden to be surrounded by family and friends.  To be surrounded by as much love as possible.  People who want him to be as healthy as can be.  Cayden deserves that. 

I cannot force you to wash your hands.  It is your choice. I can however respectfully ask you to stay away from Cayden if you choose not to. It's all about keeping our Cayden here and healthy!




Saturday, September 11, 2010

11 Months

Where did little baby Cayden go?

{October 21, 2009}



Who is this wild little boy that doesn't have time to get his picture taken?


It couldn't be my Cayden!


No, my Cayden always sits still for picture time:


<3    <3   <3


When I bought these picky sticky birthday stickers, I never thought about how hard it would be to catch tackle an 11 month old and have him sit still for one second!

11 amazing months have flew by, I love you Cayden!

Wednesday, September 1, 2010

Wordless Wednesday

Day at the beach:
Half Moon Bay, California


Thursday, August 12, 2010

Teeth!



On July 20th, we discovered Cayden's first tooth!  They are both out now and really sharp!!  Cayden isn't the happiest in this picture, but it shows his teeth really good:



Tuesday, August 10, 2010

10 Months!

Happy 10 months Cayden!  I love you!




Cayden is...
Saying mama, dada, and ball.
Crawling around like crazy!
Climbing.

Cayden Loves:
Kitties and puppies
playing ball
pasta with cheese sauce
bacon
tasting everything, including dirt
bath time/hot tub





Tuesday, July 13, 2010

Cayden 8 Months and 9 Months Old!

Cayden's 8 Month Pictures:




At 8 Months Cayden is:
Almost crawling
Saying da-da-da-da-da-da
Pulling himself to stand (June 12th)
Feeding himself finger foods and favorites are still chicken, steak, fish and cereal



9 Month Pictures:



At 9 Months Cayden:
Is crawling (as of the 6th of July)
Walks around furniture
Loves standing
Still really likes to eat chicken and steak!
Favorite toys are his ball and the phones.
Loves to dance, especially to "California Girls"


Cayden is changing so much everyday, he is no longer my little baby!  I love watching him grow and discover new things.  Since he has learned to crawl, Cayden has found a new sense of independence and he loves it.  He love opening drawers and cupboards and investigating their contents. We will be buying a baby gate asap!

Tuesday, June 29, 2010

Back from blogging break.

I took the last month off blogging to focus on finishing exams and school. I only have a month lawft in my practicum and then I will finally be done working five days a week. Being a working mom has been so, so much harder than staying at home.
Cayden turned 8 months and has learned to stand on his own and is soo close to crawling. He is rocking on his hands and knees and moves backwards back to sitting so it won't be long!
We had CF clinic this moth as well and caydens growth is hanging around the 25th percentile for weight and the 50th for height. He weighed in at 17.5 pounds and 69 inches so he is following his curve nicely. Everyone was happy with his progress but we are still having GI troubles so he was put on some flagyl to try and curb some of the bacterial overgrowth they think he has. Other than that everything was good. We have to come back to clinic in July to meet with the GI doc again.
Our great strides walk was really successful with team cayden tripling our goal of a thousand dollars. We had 15 walkers with us that day who all braved the cold winds to walk to cure cystic fibrosis! It was amazing to feel such support and to meet some other cf'ers I'm the chapter; one of which is a lung transplant survivor of ten years. 180 000 was raised at the calgary walk this year which is just amazing!
Anyways I am writing this from my iphone so I don't have pictures to add but I will post them soon!

Sunday, May 23, 2010

tough cf day

having a tough day cystic fibrosis day. my little Cayden was up late last night screaming in pain because he had another rectal  prolapse. no mother should have to try and soothe their baby while they push his rectum back in.  everytime he would try to pass gass or stools he would push so hard and just scream in pain.  all i could do was hold him and last night, cry with him.  i had one of those "it's not fair" moments and i hate getting like that.  the "why was he given this ugly battle to face? why does he have to have pain almost everytime he poops, why? why? why?"  sometimes i look into his innocent little eyes and wonder what his life has in store for him, how will i raise him right and tell him about this disease.  how will i stay strong for him when i can barely hold it together sometimes? what if i loose him? 

right now Cayden's diagnosis is still so fresh.  there is so much we don't know and we are still learning how to cope with it all.  we try and stay positive but honestly we still avoid the harsh reality of it and its still too hard to talk or think about sometimes.  maybe one day we will get there.

Monday, May 10, 2010

7 Months



My Cutie is 7 months old today!

Sunday, May 2, 2010

Back Carry

This is my first attempt at carrying Cayden on my back with the BabyHawk.  Cayden loved it and was giggling the whole time and he felt pretty comfortable but I am not sure if I am wearing him right and if  he was high enough, do any of you expert babywearers have any suggestions?

Saturday, May 1, 2010

A Solid Start!

Cayden is starting to really enjoy eating solids.  He has been interested in what we have been eating and drinking for over 2 months now but just never wanted to eat "baby food."  After taking a break from trying, we gave him some ground up fish mixed with some milk and he gobbled it right up!  Since then, we have tried lots of different foods but chicken, fish, and rice cereal are his favorites!  I have been making Cayden's baby food but I am not really freezing any of it,  usually we just puree whatever meat we are having and give it to him and it works fine.  The information we were given on solids by the dietician says that they shouldn't need to be fed a really pureed texture for too long, only about a month, so we are trying to thicken things up a bit!  We add salt and either formula or pumped breastmilk to the food to puree it with to give it some extra calories!








Friday, April 30, 2010

Flashback Friday

How did my little Cayden go from this:

{October 22, 2009}

To this:

{April 23, 2010}



Right before my eyes?





Dear Time,

Can you please go a little slower?

Love, Amy

Thursday, April 29, 2010

Mommy's big guy!

Look who is sitting up all by himself!




Wednesday, April 28, 2010

Clinic Visit

Cayden's CF clinic visit on th 6th went really well.  He is weighing in at 7.060kg and 66cm so everyone was happy with his growth this month.  We met with Cayden's Respirologist and I told him about his recent choking on mucous episode.  He was concerned and let me know that Cayden should never be not able to clear the mucous in his throat by himself.  He thought it would be best to start Cayden on a nebulizer medication (pulmozyme) to help cut up the mucous so Cayden can clear it easier.  We now do his nebulizer before morning chest physio. 

We spoke with the GI doctor about Cayden still prolapsing and waking through the night lots.  She thought he is still waking lots because of reflux issues.  She prescribed him prevacid for the mornings and we will continue with the ranitidine at night, so far he hasn't been waking quite as often, so hopefully we figured out the problem.  She also let me know that Cayden's iron levels are back up to normall so we can stop giving him the supplement which should be easier on his tummy too.

We met with the dietician and she wants us to continue trying to get Cayden on solids.  He wasn't taking them well, and still spitting it out so we took a 2 week break.  After the break, we tried some fish and he loved it!  We think that now that he is starting to eat a little more solids, we will start adding table salt to his food instead of the sodium solution we currently give him orally. 



First time Cayden gets his nebulizer treatment:

Saturday, April 10, 2010

6 Months!!!

Cayden turned 6 months today!  It's hard to believe it has already been half a year, it has flown by. Even though it has gone by so quick, I can hardly remember life without my little boy.  Cayden has quite the character and is always busy playing, grabbing things, and rolling around.  He is an easy going baby and often just goes along with whatever we do.  The past 6 months have brought many laughs and many tears, but everytime it gets too tough and I feel overwhelmed he gives me a smile or a cuddle and it makes it worth it all.

I love you little guy!


Tuesday, March 30, 2010

Keeping Busy!

I have been way too busy with life to blog regularly.  At the beginning of March, I started back at the hospital to finish the last bit of my practicum.  I am currently working around 4-5 days/week so it's been pretty hectic trying to get back into a routine.  By the end of the day I am so exhausted that I just crash with Cayden on my bed.  I feel like a zombie, sometimes I don't even remember waking up in the middle of the night with Cayden.  When Phil is gone, I co-sleep with Cayden so I just feed him in my bed.  Lately I have been waking up to enzymes in the bed, sometimes stuck on my face?  I hope at least some make it into Cayden's mouth.
I also am loosing everything, from my wedding rings, cameras, and my glasses!

It's not all bad though!  I really enjoy getting out of the house and having other adults to talk to! I also think it's good for Cayden to spend some time and build relationships and trust with others.   Cayden is doing well with everything, except he hasn't been too interested in taking his bottle. It's really important for me to continue breastfeeding  as long as possible so I pump lots during the day.  He only eats a little bit while I am gone and then he seems to be catching up when I am home, eating about every 2 hours.

I am doing really good with getting all his treatments in too.  I get up at about 6:30 and we do physio for 1/2 an hour and then I shower and Cayden plays in his vibrating chair or on a blanket on the floor.  I have breakfast and get my lunch made and by now it's about 8.  I give Cayden his ranitidine, aquadeks, vitamin d, urso, antibiotic, enzymes and then nurse him.  After that we try some cereal and then the babysitter arrives and I go to work!

{Cayden and I at the dinosaur Museum}


{A tired Cayden playing while Mommy eats breakfast}


{Trying some sweet potatoes for the first time}

Great Strides 2010

On May 30, 2010 we will be taking part in the Canadian Cystic Fibrosis Foundation's  Great Strides walk.  We will be walking on Team Cayden with our family and friends in Calgary, Alberta.  Our team goal is $1000 and so far we have raised $415!!!! Awesome!

All money raised will support the work of the Canadian Cystic Fibrosis Foundation. The Foundation funds CF research and it provides supplementary support for CF treatment programs at 40 Canadian CF clinics and five transplant centres.

To give you an idea on how the Canadian Cystic Fibrosis Foundation is directly helping Cayden:
-The foundation pays for ALL of Cayden's antibiotics until he reaches the age of 18....So far this has totalled to about $500.  Because Cayden will be on antibiotics for most of his life, and some of them can get very pricey, this will help out a huge amount.

I have been so taken aback by the generosity of our donors so far!  Some are friends, others are family, some have even been complete strangers. Jen from Mommy Brain featured Cayden's Great Strides last week, check out her fantastic blog.  She always has lots of good contests and her daughter Jane is super cute!   Also, our Facebook group, TEAM CAYDEN has 70 members!  There is so much love for our little Cayden! 

Click here to visit our Great Strides page to donate or to join our team!

THANK YOU!!

Wednesday, March 10, 2010

5 Months of Cayden

Happy five month birthday Cayden! 


{click to enlarge}

Sunday, March 7, 2010

Jolly Jumpin'

Cayden's Clinic Visit

We had Cayden's clinic on the 2nd. Cayden did soo good as always, giving lots of smiles to everyone.  Our biggest concern  were his stools and his liver.  Last week his stools were really mucousy, they basically looked like yellow or clear snot. Cayden was also straining lots and having even worse prolapse than before.  We increased his enzymes and are giving it a few days to see if that helps.  So far he hasn't had any prolapse yet.

Cayden's liver enzymes are still really high and his copper levels are showing up strange.  The gastro doc mentioned this shows up in something called Wilson's disease.  She wanted to repeat his labs again to be sure, please pray that Cayden can catch a break and his copper levels show up normal. 

Cayden's weight has actually decreased since his immunizations and 4 month check up, it could have been different scales though.  His weight at clinic was 6.44 kg which is about 14.2 pounds. 

The Dietician wants us to start solids in a couple of weeks, once his stools get back to normal. I am excited to start but breastfeeding just started to get easy!

Wednesday, February 24, 2010

Update on Team CAP

Haven't updated in awhile but no news is good news!

Phil is still away working and should (hopefully) be back in the next couple of weeks.   Cayden and I stay busy going for walks, shopping, watching olympics, baking, dim sum, and visits.  We sure miss daddy though!

Cayden had his 4 month immunizations and 4 month check up the same day and he did so good for both!  He was a little fussy and just wanted to be cuddled,  who can complain with that?  At both the dr.'s and the health unit he was weighed and he averaged 15 pounds between the two!  He now is 63 cm.  It's unbelievable that Cayden Boy grew a whole pound and 2 cm in 2 weeks!  Love it!!

We started Cayden on iron supplement the 2nd week of Feb as per his gastro docs reccommendations and it has just made him sooo gassy and irritable.  Cayden is so gassy the entire day after taking it and he wakes every hour in the night and jsut toots away.  He is not the same happy boy when he takes it so we have stopped for the time being, and plan to check with his clinic if there is an alternative. 

It is so amazing watching my little guy change everyday! He is so intense in play and story time.  He works so hard to play with his toys and gets frustrated when his hands can't do what he wants them to!  He loves his books and gets excited when he sees them!  His breathing gets really fast and his stridor gets really loud when he is excited, it's pretty cute.  He does it when we play pat a cake, read his peek a boo book, when he sees someone he recognizes and when he sees a washcloth.  Cayden loves washclothes, he goes nuts when he sees one and has to chew/suck on it, it's too funny!


{Busy playing}


{All cuddled up for a nap!}


{My happy guy}


{Cayden and Grandma in matching Team Canada outfits}


{Trip to the zoo...first time out in the babyhawk}

Thursday, February 11, 2010

Welcome to Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Wednesday, February 10, 2010

4 Months!!!

Cayden Boy, you are 4 months old today!!  I truly cannot believe how fast the time has gone already!

This is what you like to do:
-you love to swim and you really love bath time
-you smile lots and have just started to laugh,  you especially love to giggle at farting noises...such a boy!
-you can roll from front to back and are soo close to rolling back to front
-you love to grab your toes
-you love to read books with us. your favorite is Moo, Baa, La La La
-you play with your telephone and bus at grandmas house
-you fall asleep great as long as you have your soother, lambie, and a blankie
-you take all your medicines like a champ
-you love to pull mommy's glasses off
-you can sit up with a just a little help
-you are so happy and rarely cry
-you love to grab and discover everything!