Hope for Life

The silence here at night is deafening. Once in awhile a child screams out in pain and I am numb to it. There was a time I would have cringed at that sound, my heart would have ached for them. Not now. Now I think 'thank god that child has the strength to scream, the energy is there, they are alive.' Alive...not well, but alive. I took too much for granted, now I need hope for life. Stay strong little man...you are my hero.

Monday, August 5, 2013

YAY!

We are pleased as punch to announce that Stephanie Roung of MitoCanada has made it to the top 8! Confirmation emails were in on Friday, Krystal got hers too, and Canuck Place will receive a $10,000.00 donation!!. The two moms get to meet each other! It's very exciting. *insert a million smiley faces here* We have known about Stephanie since Ayzac got his first preliminary diagnosis and they helped spread awareness in our small town when a fundraiser was held here, by sending us brochures to hand out. We knew very little back then about the disease and MitoCanada was very receptive and quick to help with what they could! Since then, we made our own little brochures and keep them on hand for when people say "What is Mitochondrial disorder/disease?"

Good Luck Stephanie! In our eyes you are Top Mom!

Friday, August 2, 2013

*Whew*

Gotta say, glad the voting is over for mom of the year. It was exciting, tense and touching! We had a great little campaign team, making calls, getting the word out, posting, sharing and we even installed a promo on our personal vehicles that I made with donated vinyl (Thanks Heritage Signs)! A HUGE THANK YOU to everyone who voted, shared and felt inspired. the Wolf, the Rush, 100 Mile Free Press, Peace Arch News, Sonic Nation and all of the local 100 Mile Stores who put up little posters and encouraged voting! Ayzac has always had a special place in their hearts since he was born here. Our hometown Medicine Hat got on board even though they were going through their terrible flood and had better things to do than worry about voting, CHAT and my96, THANKS! Yours By Design Drywall, thanks it's customers who voted to get their houses done! (kidding) A special shout out to our SW!!!! If I missed anyone, I am sorry, give me a comment and I will rectify!

 Krystal doesn't think she's anyone special, doing anything any mom wouldn't do and a lot of people seemed to think different, which is why I nominated her in the first place (not just me though, another person did too, and we worked together on it but only one can be named and that person asked to be anonymous).

Krystal took the opportunity given to further spread the word about Mito and rare diseases, especially when she was invited to be on Breakfast Television Vancouver and JoyTV. They tracked her down through that beautiful article written in the Peace Arch News/Surrey Leader.  Leah, the videographer for Joy TV thought ahead and did two endings. One for the voting round and one IF Krystal would go on to the finals, which she has, since she had almost 10,000 votes when the voting closed although it will be nice to when it's confirmed in the official email, expected around the 6th of this month. 10,000 votes is a whole lotta LOVE and awareness! We were surprised at how many people had heard of Canuck Place but had no idea what they did! They do now!! If you have to be in the position Krystal is, there is no better place to have than a Children's Hospice who cares for your little one AND you. It's the best charity you hope you never need but if you do, you are glad it's there for you to help you through. If you want to get involved, Canuck Place has fund raising events all year long that you can help with, just visit their site: here

Best of luck to the remaining moms, you are all so incredible, your stories touched us so much! A special shout out to the other mitomom who also made the finals Stephanie Roung, who has made leaps and bounds with her charity, Mito Canada. we couldn't help but point some energy in her direction during the campaign. She is a hero of Krystal's and it would be MOST awesome if BOTH were in the final 8 as they are wanting to meet each other! Right now, the judges have the difficult task of choosing 2-7 for the final 8.

-Lorna

Saturday, July 13, 2013

The Post with The Most.

Hello All!
I am SO touched and amazed at the support of my BC and Alberta friends for my nomination for mom of the year!! I would just love to line you all up and give bum pats to all! Thank you to all who have supported and shared, for all the love and support!! I still can't believe my eyes if I visit the page and my name is highlighted!! Please continue to love and share, we have another 2 and a half weeks till it's over. Now you can all say "Mito? Why yes, I have heard of that!" You can check out our Charity of choice for all this, Canuck Place. Canuck Place is only one of six childrens hospices in North America and can use all the help they can get!

Ayzac has been holding stable the last few weeks, as he usually does in the summer. For some reason, he's more stable this time of year, which is why we are worrying this winter will be his last. In the meantime.......
If Ayzac could talk he would be saying "HEY there! Go vote for my mom!"

I have to say though that one SUPER exciting thing this week is Ayzac figured out his new walker, and LOVES it! Check it OUT! I will be taking him OUTSIDE in it today, for the first time, he will walk outdoors! If you are in Surrey and see us with our funny yellow contraption and you've voted, give us a honk!

-Krystal

Thursday, July 4, 2013

Mom of the Year

Hello all,
Yes, we know it's been a long time. Time runs quickly between hospital visits, care for Ayzac and just life developments. Ayzac is now officially palliative (12 months or less) and we are trying to focus on the good in our lives and the positive changes he has made for all of us. Now that he has full time nurses, Krystal was able to go to school for nursing, inspired by him. Despite her huge load, she is getting top marks. A documentary, following her, is under way and preparations are being made to follow her about as it will be about life with a child with a rare disease. We don't have a ton of details just yet.


One development that we are rather excited about, is that I nominated Krystal for walmart's "mom of the year" as a mothers day gift, after another loved one called and asked me to do it. To our surprise and astonishment, she has made it the the top 20!!!! Please visit the link to vote for her, ensuring a place in the finals.
 MOM OF THE YEAR

For those who don't have facebook, I'd like to quote a few of the comments being made about Krystal from outside our family circle

Shelly Adam:

Krystal is an inspiration to all Mother's... she only wants what is best for her children and has proven that to me from the start. She is, without a doubt, "Mom of the Year".
P. Woodburn:
 In the face of adversity Krystal continues to show that love conquers all. I am truly amazed at her strength and stamina to continue day in and day out after repeatedly being given daily mountains to climb! She is truly an amazing woman.
Liz Murray:
 Krystal is beyond amazing she is unstoppable, both as a mother and a woman. She is hands down Mom of the Year!
J. Althoff:
 I have, and still draw strength from Krystal. What an amazing mother and woman.
M. Harezmueller:
 I can't imagine anyone being able to do a better job. Amazing and inspirational, Krystal.
K. Racine:
 Simply amazing, a true inspiration ...she is human, her outlook in life, her knowledge, her passion(s), she is real, her struggles, her achievements, her triumphs ...just a few reason why this mom could easy be considers mom of the year. She brings so much to everyone she meets, I am proud and honoured to have met her. ♥
L. Gray:
I agree! Krystal is an amazing Mom and she's going to be an amazing nurse. I'm honoured to have met her and her children. She's an inspiration :)

S. Ridley:
Krystal is a wonderful and beautiful person and she derserves this and alot more for everything she has done for her children and others. You are a inspiration to alot of mommy's, me being one of them and you deserve this.
I. Khazzle:
Krystal is an awesome classmate of mine. She contributes a great amount of knowledge to our class. She shares interesting stories about her son which enhance my learning experience. When listening to Krystal, it is obvious to me that she is a wonderful mom. The amount of care she provides for her son is immeasurable. You're a special person and are supporting a great cause. Good luck Krystal :)
T. Bui:
Krystal is a tough mother! Despite her worries she tries her very best in school. One of the top tiers. She has demonstrated knowledge from outside the class, and continuously inspire us to do good! You will become an awesome future nurse! Keep up the good work Krystal!
I Sall:
 Krystal is an awesome mom, and an amazing person. She’s a strong woman and I'm glad she's being recognized for her hard work. She definitely deserves this and is the Mom of the Year!
E. Santos:
 Krytal's truly inspiring! It's hard enough to get up in the morning and face the little struggles we have in life, let alone, having to deal with major ones that she's gone and still going through. More power to you, Krystal! You are indeed a winner already!
A. Heggland:
  Krystal Lynne Shipley really is nothing short of amazing! We met Krystal at Canuck Place while Maddison was in her last weeks and we are so blessed to now call her a part of our extended family. She was there originally as a huge support to her Aunt and Uncle while her little cousin, Kade was palliative and sadly, later passed away. At the time, Krystal also knew that Canuck Place would become all too real for herself and her own family as her beautiful Son, Ayzac, also has a life threatening disease. Ayzac is now palliative and Canuck Place is already being used as a resource for the family. While she went through all of this, Krystal started nursing school and is getting top marks! She is going to make an excellent nurse. She has two other beautiful children, Taija and Kazzdon. While we were at Canuck, Krystal did her absolute best to keep us all smiling. She helped us enormously to get through the days with her witty sense on humor and amazing zest for life....All while knowing her son would be there one day. The Walmart Mom of the year prize doesnt just go to her. $100,000 also goes to Canuck Place. Please take a moment to read her story SHARE and vote! She really is an inspiring and most deserving Mom!! Thanks in advance :)
and one from Krystal herself: 

Many of you have heard about me and my son Ayzac, who is currently in the final stages of life (12 months or less). I just found out last night I have been selected as one of the top 20 moms for mom of the year!!! This means I could win as little as $10,000 dollars for my charity, I chose Canuck place children's hospice. They provide symptom management and respite and end of life care for families like ours!! I could also win $10,000 for myself which would be HUGE in ensuring I could cover the expenses for providing Ayzac with the beautiful memorial service he deserves. Votes could guarantee me a spot in the finals. PLEASE PLEASE go to www.momoftheyear.ca and read my story and vote for me!!!!! THANK YOU!!!!♥
-Lorna (Ayzac's gramma) 
Thank you all so much for your love and support. It really helps our family get through the darkest of times.

Saturday, March 9, 2013

Time Sure Does Fly!

Again time has flown quickly and before we know it, another year has passed since our last update. Ayzac is still kicking and some developments have happened, some good, some not so good.

The gene that has caused Ayzac's unique form of Mitochondrial disease has actually been found, it is called RMND1 and as far as anyone can tell, Ayzac is the only surviving child with it. Other RMND1 cases have been found, but those babies passed at 2-3 months. (McGill University in Montreal published about the gene finding, just two days before UBC discovered it too.)  While this discovery will do little for Ayzac, it will hopefully do a lot for future RMND1 babies and possibly more.

Ayzac has maintained basically the same path this past year, in and out of hospital but had a record breaking summer last year with almost 14 weeks home with no admits! The largest concern is his many bouts of pancreatitis, a very painful and life threatening illness. While he has obviously survived each bout, it is not without consequences; each time injures his already fragile kidneys, to the point that he is now in renal failure and his time on this earth is drastically limited now.  It has also been discovered he has a gene anomaly that leads to these frequent bouts. He now has a G-J tube as his tummy doesn't tolerate feeds and meds well anymore, so they are given to the jejunum (lower tummy) now to help prevent vomiting. He also had to have a VAD moved, then finally removed due to constant infections (which are normally very rare).

We all still hope for the best but of course accept this reality and are preparing for our goodbye's. No amount of preparation, counselling and planning will help in those final hours, but it can give us a tiny sense of control over something we cannot ever hope to. The family remains as strong as possible, tight knit and loving and riding the waves clinging to each other for love and support as best we all can.

Ayzac is a beautiful boy, who loves life, smiles almost every day and takes immense enjoyment out of even the smallest thing. His latest favourite (other than his jolly jumper) is touch screen phones, how fun they are to lick and touch! How fun it is to see the look on mommy's face when it is thrown to the hard floor! He actually kinda gets the concept of flinging the birds in one game and thinks it's very funny. He also simply adores his play mirror, he loves smiling and nodding at the handsome fellow who is reflected there. He has learned more signs, but his favorites are still "what?" "meds" and "mom". He also has a special smile and almost evil chortle reserved for when he has filled his diaper with something especially heinous. I think he just likes the look on our faces.

During the past year, his mom, dad (Mo) and siblings were forced to relocate from 100 Mile House to Vancouver and be within a one hour radius of BC Childrens Hospital at all times.  When home, Ayzac now has nurses through part of his day which are a huge help, given the sicker he becomes, the more complex his care is. However, his nurses adore him so much and dote on him so completely; that they leave almost nothing for mommy to do during the day. This left his mommy feeling lost and not knowing what to do with herself,  having done the lions share of his complicated care herself until this point; and so, inspired by her sick boy, she enrolled in nursing school with hours that work around Kazzdon (7) and Taija's (5) school hours and Ayzac's nurses schedule. Once nurses are gone and children home from school, she tends to the children, takes over Ayzac's care, maintains her home and then it's homework and research until the wee hours. Mo, Ayzac's daddy is there a week out of each month when off work and good luck prying that baby out of his arms! Even I (Gramma) have to plead to hold the precious child if daddy is around! For those who may not know, Mo stepped into the shoes of being a father for Ayzac when the position was left vacant almost 2 years ago and he has deeply fallen under the Ayzac spell and Ayzac loves this man more than anyone (even mommy sometimes feels slighted, lol). It takes a big man to take up the role of stepfather to three children and even a bigger one to take over the care and loving of a sick child who you know you will lose at some point. I will be forever grateful to Mo for giving my little grandson the daddy he needed and deserved, so he can know that kind of bond and love in his life. Kazzdon and Taija both report that: You rock socks daddy Mo!

Saturday, February 18, 2012

Then and Now

Well hello everyone!

Okay, I know it has been awhile since I have written a post. But, before that dirty look leaves your face stuck like that, I do promise to make this post a good one! Let me start by saying I don't know where to start. I could try to re-cap everything that has happened since August, or before August, but I honestly just don't remember much. Its a good thing my mom had been posting updates for me or this blog would be pretty uneventful. I did however ask her to stop posting. I was feeling like I should be on top of it and wanted to put my point of view back into whats being written. But then I got busy, distracted, some days lazy and just plain forgetful and TA DA! no post since August.
Okay. Now that we are all friends again, hopefully, I will get to the big question. "How is Ayzac!?".

UPDATE ONE: VAD
Sometime long ago (forget me trying to remember exactly when) Ayzac got an infection in his line. A staff infection to be exact. He got very sick, mainly just vomiting, but we noticed right away his kidneys were getting less and less tolerant of dehydrating. He was treated with Antibiotics through the line for two weeks. Roughly another week to monitor him and make sure he had negative cultures and off we went back home. I think we were home a few days to a week and he started vomiting again. This time with a fever and I just knew he had a line infection again. Off we went air-lifted to BCCH as usual and again he was treated for postitive staff infection. Another month in hospital. Another month away from Kazzdon and Taija. This same senario played out not once more but TWO more times. 4 line infections in total before the antibiotics just weren't cutting it. Surgery, along with our biochemical docs and infectious diseases ALL agreed the infected line needed to be removed. After a near four months in hospital just for these nasty, and might I add PREVENTABLE infections, he finally had surgery on December 11th to remove his line. 4 days and 5 IV's (Yes, 5. IV's are FUN to pull on!) later, he got a new VAD on his left side and they also swapped his PEG tube for a neat little MIC-KEY button. He healed up and we got released just in time for Christmas once again. I think it was the 20th.
Christmas went really well and the kids were all spoiled and had a great time! I was grateful just to be home. Ayzac started throwing up again through the holidays. Not a ton but enough to go to the local hospital on Christmas eve and boxing day for bloodwork and saline boluses.

UPDATE TWO: C-DIFFICILE BACTERIA
On the 27th of December we were air ambulanced yet again to BCCH. This time Ayzac suddenly started throwing up a ton. Litterally overnight he went from fine with a few pukes a day to incredibly sick. Puking his face off, dehydrating far too quickly and having nasty, foul, all the way up his back, make you gag, liquid poops. Green ones. Just so you can get a really clear picture :) His Creatinine and Urea (measuring kidney function) went to a new all time high. Stool cultures revealed he was positive for a common bacteria called c-diff. Most children, especially healthy ones, don't get ill or receive any treatment for c-diff. It basically makes you have lots of loose smelly stools and goes away on its own. However severe cases need treated with antibiotics. The funny thing is C-Difficile accumulates in the gut usually when the person has been on a lot of antiobiotics, because bad and good bacteria get stripped away and the bug can grow. So it made sense that he would get it after spending almost 4 months on antibiotics! Ayzac, being Ayzac, took a mild case and added some pizzaz with vomiting and dehydration. I found out close to discharge, about two weeks later, that a GFR test revealed Ayzac's kidney function at about 30%. We had originally been told he was sitting around 50% function which was still great. But this new news was not so good. His kidneys just could not tolerate his chronic dehydration and decided to give us the finger. Ayzacs renal doctors are starting to step up in his care at this point. Soon they will be ahead of our metabolic doctors. We went home, finally, again. With some new medications but NO puking!! We had an awesome first week at home. It was the first week since Ayzac had been born that he didnt vomit at all. Not a drop. I was thinking Ondansetron was my best friend at this point. But just as we got unpacked and comfortable Ayzac started puking again. His poop changed quickly and I knew right away the C-Diff was back. After what happened with his kidneys last time we didn't hesitate. We came back to BCCH right away. He indeed tested positive for C-Diff a second time. This time he was treated with antibiotics for two weeks and we were admitted for almost three weeks. We actually got discharged and within 48 hours were re-admitted before we even made it home. A few days later we got to leave. That was last Saturday. This last Wednesday he was back in for vomiting and getting bolused at our local hospital. Yesterday we were air lifted again to children's. 4 days at home. 4. This is the part where I ask your help in finding my sanity.....

Thursday, August 18, 2011

6 days home.........

and then airlifted once again, the worry was he was developing pancreatitis again but the bloodwork numbers were just a bit off for that. I lay awake one night with a hunch and rolled it past Krystal the next morning and she thought it was a great idea but the docs originally blew it off,thinking that couldn't be it.

When we took him for bloodwork on Tuesday, he was upset the entire time he was accessed, absolutely not normal but it had taken two tries and he was calm as soon as it was over so we blew it off. When we took him to 100 Mile Hospital they again had to try twice to access him and he was inconsolable. He broke a fever, very dangerous to him and of course the call was made, thinking it was pancreatitis. When Krystal can't console him, something is seriously wrong, he is generally a very happy baby, despite his struggles.

As it turns out, he does have a line infection in the VAD which is at least treatable, and hopefully not with a new surgery to put in a new one but only with antibiotics. He is not in as much pain already with broad spectrum antibiotics started in 100 Mile House. The treatment takes time, 10 days with meds in the line, a 2 day break and retesting. If it's longer, I may tag team with Krystal so she can come home and get Kazzdon ready for school and his birthday.

The leftover mystery with his trip is why were his lipates up and nothing else and why were they up? Insert big green question mark here.....