Count it all Joy

Sheridan and I got away for a week and went down to California, we had a wonderful time! While I missed my baby boy, quite honestly I am used to leaving him. I've done it every day since the day he was born. A week is a bit of a different story, although I did miss him like crazy I refused to let that consume my thoughts. I don't know when we'll have the chance again to get away just the 2 of us again so I wanted to soak it in and have fun! I've been to California a few times but this was my first time to Disneyland and California Adventure. Wow, it was just so much fun! 

Deklyn had a great week spending time with this Grandma's and nurses but the day we were heading home Deklyn was not himself, and when we got in at 3:30 in the morning to say a quick hi before we went to bed he was not looking so good. He was needing lots of oxygen with no clear reason why. The following days were the same with him needing lots of oxygen and extremely irritable. This was frustrating because exactly a month ago we were dealing with this exact issue and we were sent back to ICU. I was terrified and heart broken that we were in the same predicament as last time. Luckily though every day since has SLOWLY been getting better. He's still not exactly where I would like him but he's not doing as bad as he was. 

I felt like we were running in circles... and to top it all off we were being faced with some decisions we did and still don't want to make. Decisions for Deklyns future. We need to start thinking about taking him home, which is exciting but at the same time there are things we need to be able to take him home how he is now. One of the things needed how he is now is a new vehicle... Sheridan and I just bought a new vehicle in hopes that it would suit Deklyns needs but as far as we know right now it doesn't. Sheridan and I are standing in faith right now that we will not need a different vehicle, that either they will come up with a way for it to work in our vehicle or, as always, that he will be completely healed. Thanks for praying with us on this!

Joy.... this word has been on my heart for a few weeks now. Although Sheridan and I did get away for a little while and that was very nice, we've still been stressed beyond what anyone with healthy kids can imagine. Some days I've felt like the load on my heart could make it completely stop, but I know that is my fault. I've had trouble giving completely everything to God. I worry and stress about the future when I need to let tomorrow worry about itself.

 Count it all joy when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. James 1:2-3

According to that verse I should be one joyful person and I've struggled with being joyful. I go to the grocery store, the mall or go on facebook and I hear people talking and complaining about their kids or about being pregnant...  please don't feel bad if you've done this I know with all my heart if everything had turned out normal for us I'd be saying the same things. But the more I'd hear people complain the more upset I'd become. I'd give anything to hear my baby scream as loud as he could, or have him through a tantrum in the middle of the store(One day I'll regret I said this when you all remind me I wanted this!!), or to spend the night trying to get my baby to sleep. I've come to the place where I know I just need to not let these things bother me any more because it is hurting me more than anyone else. Now in saying this, I know its not going to be that clear cut and I know its going to take a lot of training on my part to get my brain where I want it! My joy has been stolen and I am taking it back!

Were ready for change. We've been in this hospital far to long, and I'm so ready for a miracle that no one can explain expect by saying it was God. Get ready people! Its going to be good and its going to be soon! In Jesus name we will not need a new vehicle, we will not even need a special chair and a ventilator will not even enter our home. Deklyn is coming home soon! I've had far to many confirmations that this will happen, I know it will.

Thank you for continuing to believe with us and pray for us! We are claiming the healing God has for our son, get ready to see it!

Expecting Great Things

Taking off from my last post, the evening of the 23rd Deklyn was able to be weaned of the Nitric Oxide and in the afternoon of the 24th we were moved back into Deklyns big room! It was honestly a miracle they kept Deklyns room for him for that long, even though all the kids on that ward are there long term even if ones leaves for a few days they fill up the rooms pretty quick. I think they felt bad for us that we were moved to ICU just in time for his birthday, and the hospital usually clears out as much as they can to get kids home for christmas maybe they thought they could afford to hold his room for us. It would have been devastating for us to move out all our presents, christmas tree and all his clothes and toys just to be coming back in less than a week, so really it was so amazing they held the room for us and I am SO grateful they did!

We had a great Christmas eve, Christmas & new years together! Deklyn watched us closely as we opened his presents it was soo cute! Deklyn and Sheridan got me a very special gift this year. After all the presents were opened and I thought it was all done, Sheridan brought in a huge present that ended up being suitcases, when I opened them up it turned out to be a trip to California! Sheridan is amazing with always surprising me and doing special things like this (I am SO lucky!) Although I am going to miss my baby boy sooo much, I know its going to be so good for us to get away, relax and just have fun together! I am so looking forward to it, and I know Deklyn will be in great hands and of course it helps that I will get to buy him presents!

Thank you for all the prayers for our family to stay healthy! Although not everyone was feeling 100% we felt ok moving Deklyn into the room with everyone as long as the people who weren't feeling the best didn't touch him. It was so nice to have everyone in one room for the 2nd time since Deklyn was born, and for the 1st time Deklyn got to play with his cousin who is the closest in age to him, it was so nice! But now I am sick and have not spent a good amount of time with my son in a whole week! Its one of the hardest things I've done in awhile but I know its whats best for him. He just can not handle being sick, it wouldn't be worth it in the end!

Looking back at 2012, it was an incredibly hard year. Definitely the hardest year of my life. If I knew a few years ago this is what 2012 was going to look like for me, I would have said I couldn't do it. God has given me so much strength even when I felt like I couldn't go on. I am SUCH a home body... seriously... I love being with people but I'm one of those people that could be at home for a few weeks on end and be happy. This past year I spent less than 1 weeks amount of time at home and half of that time would have been sleeping. I never in a million years would have thought I could have been able to spend so much time away from home, but as any mom will tell you when you have a kid, wherever they are is your home. Sounds cheesy but it is oh so true!

We are believing for an incredible 2013 and I know Deklyn is going to see his home this year! Thank you all for the incredible support you've shown us in 2012. Really I never thought so many people would rally around us in our time of need, we are so grateful and amazed at the generosity of others. Really ever since we had Deklyn Sheridan and I have been talking about all things we want to do for others just to give back! We feel very undeserving and cant wait for our chance to return the favour! 

Thank you for continuing in believing with us for Deklyns complete healing, I know with out a doubt there will be a day where I get to lay Deklyn down in his crib at HOME, a day where I get to hear him cry, babble and giggle! I just know it. God loves Deklyn even more than I do and he has got an amazing plan for his life. He has reached more people in his 1 year of life than some people do in there entire life!

I read some verses that really spoke to me and I want to share them with you. I hope you are encouraged by them. 

Do not be afraid or discouraged. For the lord your God is with you wherever you go. - Joshua 1:9

We ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed... We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. 2 Corinthians 4:7-9 (This verse really describes our 2012, God has never abandoned us even when its felt like we were in a nightmare. He will never leave us!)

Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see. Hebrews 11:1

From Sheridan, Deklyn & I we wish you an amazing year! Some of you may have experienced a hard year like us, or maybe even worse. I challenge you to press in to God and see how he can turn things around. I promise you, you will not regret it. I know its not easy and its often the last thing we want to do in a hard situation. He will never let you down.

Happy Birthday Deklyn!!

We've made it!! Not that I'm surprised but it really is quite an achievement, my handsome little boy is officially 1 year old! As I'm sure your used to hearing already, our life is very unpredictable. After my last post of saying how well Deklyn was doing our journey took another unexpected turn. I'd noticed for a few days already that Deklyn had been needing a little more oxygen than normal but it wasn't a whole lot, and out of no where Deklyn got very sick. Our sweet baby boy could hardly keep his sats up, he was needing nearly 100% O2 (thats as much as you can get!) and still not sating good at all! The staff was amazing, they really tried their best to do everything they could for Deklyn on the ward so he could stay there for his birthday but the afternoon before his birthday things were only getting worse and they had only one other option to try.

The Amazing Cake Made By Deklyn's Gigi (Grandma) & Auntie!

If you've been following my blog for awhile you may remember back in June we were told Deklyn had Pulmonary Hypertension. They think this was due to poor lung growth and they hoped (and still do) that he would grow out of it. Pulmonary Hypertension for Deklyn basically means he doesn't get enough oxygen when the condition is bothering him. We hadn't seen any issues related to PH since June when he was put on a drug to control it. There one idea was to getting him on Nitric Oxide, I am not sure why but this gas almost instantly helps Deklyn when the PH is bothering him. They can not use the Nitric Oxide on the ward we were on so we had to go back to Paediatric Intensive Care Unit. 

Deklyns Room in PICU All Decorated!


At this point I was ready to go, but it didn't make it any harder knowing for Deklyns birthday we'd be back in ICU where he can only have 2 visitors at a time. It was pretty upsetting for a lot of reasons, he had just been doing so well and it felt like it all turned to bad so quick but like I said I was ready to go to get Deklyn the help he needed. Everyone was kinda guessing as to what was wrong at this point and I was worried we might lose him just because everyday was just slowly getting worse and worse. Luckily the Nitric works unbelievably fast so we'd know very soon if it was working or not. The instant he was in PICU and hooked up to the new vent with the nitric his sats began to climb up, we were EXTREMELY relieved!

Opening Gifts! He Did Such a Good Job, He Looked At All His Gifts And  Gave A Nod Of Approval!

So now we were trying to re-think how we were going to do Deklyns birthday party. We thought about re-scheduling but we just really wanted to have a party ON his birthday, so we thought we'd just have everyone come by, we can eat and visit in the waiting room and one by one people can go see Deklyn to say happy birthday. Not ideal, but it would work. On Deklyns birthday I truly felt we reaped what we had sowed. In the morning as we walked into Deklyns room we were stopped by a nurse who gave us an unbelievable offer. There is a small doorway in between rooms, and they were willing to move the kid that was in the room beside us so we could have ALL our family in that room for Deklyns birthday party! I almost cried! I felt like that was truly a gift from God after everything we've been through.

All Messy After Smashing His Smash Cake With The Help Of  His Parents Of Course

So although his birthday did not go as we had wanted, it really worked out very well! By his birthday he was starting to act like himself again and it was much better that we were in ICU for his birthday then be back on our ward with him feeling terrible and looking like we could lose him! So to get back to our regular ward there was 2 ways it could go. What we were praying and believing would happen was that with a few days to recuperate they could wean the nitric slowly until he was totally off and we could leave PICU. The other was, If Deklyn didn't tolerate being weaned from the Nitric he would have to undergo a test where they test how severe his Pulmonary Hypertension is (which by the way he will still need to do at some point) and then get him on another med to control the PH. Praise God, he has tolerated being weaned and by the end of the evening he should be totally off Nitric!

This 1 Year Old Is a Little Sleepy...

So hopefully we should be back on our ward tomorrow and we'll get to spend christmas in his new big room! Oh! Did I forget to mention?? Before all these issues, Deklyn got moved into a bigger room! Its probably 2 times the size of his old room which is fantastic for us and him! Its way more comfortable for us and we have room for all his stuff! 

Thank you all so much for all your prayers and support! This last week was very hard on us, and we really felt all the support! We've been receiving christmas gifts from a few of you and I really wanted to let you know how much we appreciate them! Thank you never feels like enough but every time we get another gift or note of encouragment we just feel the love & support which I know not every family living in the hospital has!

Our family could really use some more prayers, with Deklyn being so sensitive  he just really can't handle getting sick, so we can't have any visitors who aren't feeling well. We have some family that is sick right now and we really want to have everyone together for Christmas, we don't want to have to all be in one room and Deklyns alone in his room, so please pray that our family members get better so we can celebrate this time together! As a mom, it really sucks for me to have to watch my son be left out of things like family gatherings even though right now he will never really remember these times anyways.

Again, thank you SO much for all your prayers and support. Whatever you have done for us we thank you from the bottom of our hearts! You have made our journey that much easier!

1 year... Its felt like its taken forever but at the same time it feels like he was just born yesterday. We've come so far, we've learnt so much! Our son has brought us so much joy and he is one the greatest blessing in our lives. Yes I wish we could be home, I wish we had the ideal 1st year experince but I am more grateful we still have our son with us. After too many close calls and seeing so many families not as lucky as us we've really come to see things in a very different light. Today actually marks a year of us not living at home, and this has been one of the hardest parts for me. Not having your own couch to cuddle up on, your own bathroom, your own place to prepare your meals... its really gets to you after awhile. But with Gods help we've been able to overcome these feelings and just focus on our son.

This christmas season enjoy your family. Look around you and see how lucky you are to have what you do. Don't take the little things forgrated. 

Grow Deklyn Grow!!!

This is going to be a bit of a shorter post but I just had to say, things have been going very well over here! Deklyn is so happy! Nurses and doctors just keep commenting on how much happier and interactive he is since his trach change! For the first time in quite awhile I enjoyed rounds on Deklyn today, for those of you not familiar with hospital life rounds is a time where the doctors and other specialists come around to talk about the patients. For the most part this times are a little on the discouraging side, talking about all things that aren't happening. Today though there was a lot of talk about how well he is doing (Finally!!! I was so sick of hearing all the bad things), we've been so focused on his breathing and today the doctor said we need to be more concerned with his growth and the lungs and breathing should come along with that, keeping in mind as he grows we may have more trach issues ( like his trach not being long enough) but thats all part of it. 

Its usually a little scary to ask anything in front of everyone but today I got up the courage to ask if Deklyn would be able to be off of his sat probe monitor while I play with him. It would be just one less thing hooked up to him,  its a little monitor wrapped around his toe that hooks up to a screen that tells his O2 sats and heart rate. Surprisingly they told me they trusted me enough that I could do that! I was so happy to hear that! Its so frustrating trying to be a parent and then you have to watch all this wires and hoses yet so I was happy to get rid of one just for while I play with him!

Deklyn has been wiggling his arms and legs so much lately! He's usually a kid that you can hardly get to smile and I can now say I can pretty much make him smile anytime I want! Heres a short video of him smiling!

I'd been so discouraged lately, the other families here are starting to get to take their kids for walks around the hospital and there is even talks of them getting to bring there kids home for christmas. I was so happy for them but sad for us. We've been here so long and I feel like we've done everything we can to get him to a place where we can take him out and eventually take him home for good and we just never get there. But today I'm feeling much more hopefully that this day is coming!

Here is our christmas card this year, I wish I could send one to each and every one of you but this is the best I can do! Have an amazing christmas surrounded by the ones you love, as your celebrating remember to be thankful for what you have even if what you have doesn't feel like very much. My heart goes out to those of you who have lost a child or loved one,  I couldn't imagine celebrating christmas without Deklyn. My heart also goes out to those of you celebrating christmas in the hospital... its not a easy place to be especially if being in the hospital also means your not close to home.
We are blessed! Merry Christmas!

11 Months!!

Were getting closer and closer to my amazing boys birthday!! Its only 3 weeks away.... most mom's seem to get very sad around their childs 1st birthday because their baby is growing up. Me? I am thrilled! Not only because I was told my son probably wouldn't live past birth but also my son is quite small... he's not even 12 pounds yet so I kinda still have my baby. Although we are not terribly excited that his 1st birthday is being spent in the hospital we are making the best of it. I find it strange how adults tend to feel so sorry for them selves but for the most part children don't... for example yesterday a dog came to visit the kids in the hospital, while the other kids on the ward got to go the activity room to see it, Deklyn and I sat in his room as all the kids went by waiting for the dog to come to us because Deklyn is not mobile. I sat their feeling bad for Deklyn, think how sad it would feel to see everyone get to do something and you just physically can't. I had to stop myself, because I know Deklyn is not sad. He has no idea what he is missing out on being where he is and I am very grateful for that!

Deklyn is doing well! He got his new trach and it seems to be doing wonders for him! They also added an in-line suction so we don't have to take him off the ventilator to suction him, they did this in hopes that he won't have so many collapses if we can just keep him on the vent even for suctioning and so far this has been going really well too! I've been struggling with getting frustrated lately... I'm just tired of being stuck in his tiny room. I just wish I could at least take him for a walk down the hall... anything! I'm tired of picking up my son and having to watch all the cords & hoses that are attached to him to make sure they don't get pulled or anything.... I guess we can just say I am just plain tired of everything. But honestly, things are going well. For the most part Deklyn is happy, were just tired of waiting. 

Right now, I'm just trying my very best to be grateful for everything we have. Like I've said before, you don't have to be in the hospital very long to find out there are people that have things a lot worse than you could ever imagine. When I start feeling sorry for myself I just think of those people and how they probably wish they were in my situation rather than theirs. Yes, I haven't been living at home for almost a year now, my husband and I went 8 1/2 months only seeing each other on weekends, I have seen my son nearly die.... I could go on. But really... through all of this I can truly say, our God is good! That might sound crazy..... but I do don't have a doubt in my mind! I know I will see the day where Deklyn is completely healed and that day is coming soon!

Now... I've just got to say it! I have one amazing husband.... really! Yes, I do get frustrated with him... but he's got to be one of the strongest men I know... I feel like sometimes the men in these situations get forgotten. Everyone feels bad for the mom because she didn't get her ideal baby experince, she didn't get to nurse her baby, she didn't get to hold her baby his first month of life... but what about dad? Men are always expected to be strong and when life doesn't go the way we expected and mom breaks down.... dad is expected to stand tall for everyone and be the rock. I can defiantly say that's what my husband has done. 

This picture was taken at Sheridan's grad. We had been together almost a year at this point.

Most of you may not know me and my husbands whole story. Excuse me while I share a personal story that doesn't directly involve Deklyn! We met when I was probably less than a week old, our families went to church together and were good friends often hanging out outside of church as well. We'd always been friends, I was determined not to have any boyfriends through out jr. high or beginning of high school cause I'd never seen any of those kinds of situations work out. I wanted to wait for the man I was going to marry, I wasn't sure that this would work out for me but I wanted to try. Sheridan's dad became a pastor of a church which my family started going to so I saw Sheridan almost every sunday and at youth, still we were just friends. When I was in grade 12 though we started joking about going to a movie... or I thought we were joking. We ended up actually going out to a movie together and after the movie Sheridan asked "do you think you'd want to do this again sometime?" and we did! The next time we went to the city for a movie and after that he asked me to be his girl friend. I honestly think I am the luckiest girl, he is everything I know a Godly husband should be and I am so proud of him. He does so many things he shouldn't have to for me and our son... Sheridan, if your reading this... Your the most amazing guy I know. Deklyn and I are so lucky to have you in our lives and you are more of a dad than anyone I have ever known. I know you don't always feel like one but you truely are. We love you, and I wish we could do more for you. Everything you do, does not go un-noticed!

He Will Give You Strength

Some days can feel like I'm only hanging on by a thread... today was one of those kinds of days.. I woke up to a call in the middle of the night, looking at my phone and seeing the hospitals number didn't make me feel to good. Deklyn had a code blue and wasn't doing to well. It days like this that are the hardest, and they seem to come way to often. Were not really sure whats going on with him right now, our best guess is another infection and I really hope that is the issue other wise we have no idea what were dealing with. Part of the issue right now is he needs a longer trach, he's got some narrowing at the end of the one he has in right now so that is causing some issues but there is something much bigger than that going on. He should get his new trach next week so we will see what that all fixes then.

I was really feeling at wits end today. It feels like we just keeping getting one blow after another. People tend to go "Why God?? Why did you let this happen to me" I try my hardest not to get that way.. It can be hard sometimes but I always need to remind myself God did not do this to us. To be encouraging people tend to say "God doesn't give you anything you can't handle".. I may step on a few toes here but I do not agree with this statement at all. God did not GIVE Deklyn HPP, If we serve a loving God who has "plans to prosper you and not to harm you, plans to give you hope and a future" (Jeremiah 29:11) he wouldn't do something like this. I feel like people have taken the phrase "God doesn't give you anything you can't handle" to try and say something nice and encouraging when really maybe what you mean to say is "God will give you the strength to handle any situation you are in", like the verse "I can do all things through Christ who gives me strength" Philippines 4:13. Which is exactly the case! I could not do this without God! I am doing many things I never thought I could and living a way I never thought I'd be able to handle and that is all thanks to God! I find people always like point the finger at God and ask him "Why?" and we forget that there is someone out there who wants to steal, kill and destroy us. This may be a bit harsh, but I hate seeing God constantly get the blame for what the Devil is doing to this world.

On another note!

Thanks to everyone who contacted us for Christmas cards! We got so many orders we can't take anymore, so thank you so much! Some other good news is that Sheridan got a job that should last till just before Christmas!! So it should work out nicely he can work till Christmas and then spend another month with us and then head back home to work again. Thank you to all of you for your continued support. As we're approaching a year in the hospital, its just getting really hard. It would be easier if Deklyn was doing well and heading in the right direction.

Look How Far We've Come... This Is Deklyn The Day He Was Born!

I would like to encourage you today to not take the little things for grated (this is of course for me as well). There are so many people hurting, there is one family I'd like to bring to your attention. I met this mom through facebook, her son has cancer and they have gone to the states for treatment. Here is their facebook page where they post prayer requests and things like that. Please hook up with us in prayer for this little boy. He is healed in the name of Jesus, just like Deklyn! This family has really inspired me, although I do know what it feels like to think you might lose your child I think I would be much more afraid if my child had cancer.

Thanks again for all your support and continued prayers for Deklyn. He is healed in Jesus name, and I know I will see the day where Doctors are amazed at his progress and our surprised that he will be able to be off the ventilator and have his trach taken out! 

Holding Onto Gods Promises

Hey Everyone! Well since my last post we've been on a bit of a roller coaster! A few days after I made my last post Deklyn was having VERY rough mornings. I honestly thought we were losing him. He would desat, need 100% oxygen and take a very long time to get back up, in the mean time he would be so pale even grey looking and gasping for air. Not a good feeling for us at all. We ended up going back to Intensive Care again and the doctors told us it seemed to be infection related. We were really confused because he had been on antibiotics for a week already so you'd think it'd get better not worse, but they said if an infection is bad enough it can be hard for the antibiotics to penetrate it. Amazingly through all this Deklyn was always happy... the one day during rounds he was on 100% oxygen not doing well, we were talking to the doctors with tears in our eyes wondering what we could do for our son and I look behind me and there Deklyn was, lying in his crib clicking his tongue at his mobile... he is just the sweetest baby boy I know.

We were only there for a few days and got moved back to our regular ward so that was good! But we are still having issues. Not nearly as bad but he still seems to be having some really rough mornings lately. Just needing lots of oxygen and he's been super irritable. He does have one very white spot on his gums and I'm hoping this is all teething related... its not entirely impossible but all this signs point to him having another infection. We are believing this isn't the case. He really can't handle being sick again and we are just tired of it. Its extremely hard watching your child go from great to bad to worse in a vicious cycle and there is nothing you can do but pray. 

In my last post I mentioned Sheridan was looking for a job in the city to spend a few months with us. We felt very lucky that he actually found something quite quickly but it seems like it was to good to true... We've already pumped in a lot of money to this job with nothing coming back and we've decided we need to look for something else before it gets worse. Now, one way we've thought to make some extra money is making Christmas cards! My husband is EXTREMELY talented in the photo editing department. He is so creative and artistic. If you would be interested in a totally unique Christmas card this year please send me an e-mail and I can give you the details! My e-mail address is cassondra.faith@gmail.com 

Like always, thank you so much for the prayers and support! We appreciate every single one of you! Thank you for continually believing with us that Deklyn IS completely healed! We will be home soon WITH our son in the name of Jesus!