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!