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!

10 Months Old!

Sorry to all of Deklyn's fans! I know it has been awhile since my last post, but to be honest there hasn't been much going on until just recently! I'm going to be completely honest, this last little while I had been losing touch with what I believed in. I was still believing for Deklyn's healing but I kind of lost the drive I had to see it happen soon. Being in a hospital environment can really put a toll on anybody's faith, and you hear so many negative things, no matter how much I believed things would one day get better after hearing all the negatives it went from believing what the bible says and nothing else, to believing what the bible says can happen but who knows if it will. Over the past few months I realized I was not a happy person. I may look happy and sound happy, and yes I wasn't overall un-happy but mostly I was quite mad inside. Mad that this could happen to us, to our baby. Mad that it didn't seem to matter how much faith I had my baby was still born with this disease and to make matters worse he's been in the hospital much longer than we believed he'd ever be. Now, I really don't why these things I've prayed and believed for haven't happened but I know I haven't been doing things exactly right. I've believed with all my heart (or so I thought) that Deklyn would be healed and then in the back of my mind I'd say, "but that's what you said before and were still here". I don't have all the answers, no one does, but I know I need to take a better approach. I need to remember Gods promises to us, I need to stop lowering my expectations, and I need to be happy. I've found a few verses that I'm standing on in prayer for Deklyn, those of you who are praying for Deklyn I'd like to ask you to use these verses as well. 

"Have faith in God. For assuredly, I say to you, whoever says to this mountain, 'be removed and be cast into the sea' and dose not doubt in his heart, but believes that those things he says will come to pass, he will have whatever he says. Therefore I say to you, whatever things you ask when you pray, believe that you received them, and you will have them" Mark 11:22-24

Then they cried to the Lord in their trouble, and he saved them from their distress.  He sent forth his word and healed them; he rescued them from the grave.  Let them give thanks to the Lord for his unfailing love and his wonderful deeds for men" Psalm 107: 19-21

"Praise the Lord, O my soul, and forget not all his benefits --  who forgives all your sins and heals all your diseases,  who redeems your life from the pit and crowns you with love and compassion," Psalm 103:2-4

"Surely He has borne our griefs and carried our sorrows; Yet we esteemed him stricken, smitten by God, and afflicted. But He was wounded for our Transgressions, He was bruised for our iniquities; The chastisement for our peace was upon him, and by His stripes we are healed."

 Isaiah 53:4-5

I know there are many more wonderful healing verses but I thought this was good for now!

Now back to Deklyn, he is growing and growing! He really is such an amazing little boy. He has so many reason to cry and be upset and he is almost always happy and content! This week though was a different case, to be quite honest I thought we might lose our baby. For some reason we had been having difficultly suctioning Deklyn for awhile now, and suddenly he was needing a lot more oxygen than normal. Normal for him would be anywhere from 25-32% but he was on 100% and still not doing well. He didn't look sick and that was what confused me the most. For almost the whole day Nurses and Respiratory Therapists were around his bed trying to figure out what was going on. Just the day before I had got some yellow sections  out of him and they had also found he had 95% lung collapse on the right side. I suggested a test where they take secretions and see if anything is growing in them. Usually they don't unless the baby seems sick, or has a fever but they did it any ways for Deklyn which was so good they did because it came back growing an infection. So he started antibiotics, that was just one piece of the puzzle. I also asked if they could do a trach change because it seemed so strange we couldn't suction him properly, they did and found out the trach he had in wasn't right for him. His trachs need a coil in them because his trachea is floppy and this one did not have a coil and eventually it was collapsing on its self, this was the 2nd and finally piece of the puzzle! They did another x-ray and found he only had 5% collapse and he is acting much more like Deklyn. Of course we are still dealing with the infection but he is needing much less oxygen and is so much happier. Praise God!

We got to do some new fun things with Deklyn like put him in a stoller that works with the portable ventilator he will get when he's big enough, sit him up in a big chair that will help him learn how to support himself and just get a different view of things and we also got to start playing on the floor which was a blast! Deklyn was so cute wiggling around! We would lay him on his side and I'd go sit behind him and call him and try to get his attention and he would roll back onto his back to find me, it was so awesome!! So that is really just about it! Another thing we could really use some prayer for, my husband would like to join us for a month or 2 this winter to be with us for christmas and Deklyn's 1st birthday but we just can't afford for him not to work so he's looking for a job here in the city for those 2 months. Its going to be so awesome to have him here with us, but if you could just pray and believe with us that he'll get a great job for the short time he needs it that would be awesome! Thank you guys for all your support, I'm just amazed with everything that has been done for us and all the kind words and encouragement  We've needed it every step of the way! Now we just need to keep believing, I really don't care if people think I'm crazy, but I know my son will be completely healed and God is going to get all the glory. He's got an amazing plan for my little boys life but we need to pray and believe. There is no reason why we can't get an amazing miracle, ones like we read in the bible. I know I will have my son home with out a ventilator in the name of Jesus.
Here is a song that has really encouraged me lately, weather you are going through something or not it is an amazing song! Give it a listen!
http://www.youtube.com/watch?v=722zPX1npcA&ob=av2e

9 Months Old

Wow... I can't believe my little guy is 9 months already! I could have had another baby by now haha! This past while has had a wide range of emotions for me. I always try to see the positive in every situation, I try to tell myself we are just lucky our son is alive but that doesn't take away the fact that I wish things could be different. I was just so sure by now we would be home... looking ahead my sons 1st birthday is a little less than 3 months away! Taking what people say, we will be here in the hospital on that day. I am still believing we will be home or that he's at least on the portable ventilator and we'd really appreciate all your prayers for this as well. 

Deklyn is doing fairly well! He is so happy and smiling more than ever, but we are still having an issue with his heart rate. It occasionally comes down to a normal range but is often sitting in the higher end. He looks content so that is great, but it still makes me worry. I really can't believe how happy my son is... he has really been through so incredibly much and even when you know he could be crying he looks at you and blows kisses (his new favourite mouth trick). 

Deklyn got to meet his buddy Gideon this last week which was so awesome! Gideon and his family are a huge inspiration to us. Gideon was also born with HPP and they stayed in the hospital with him for 7 months. Although Gideons case was bad, Deklyn's is worse but it still helps to see a child who has the same disease playing and screaming his head off (I should add in delight). He may be a little small for his age but in the long run that really doesn't matter! We look at him and see that it is possible. 

As we are nearing winter I can get pretty sad, I was just so sure by now we'd be one big happy family in our home. I hate all the driving back and forth my husband has to do anyway and its worse when the weather is crappy. All I want is for our family to be together, even if its here in the hospital it would be so nice if we could just all be here. It'd definitely make things easier... but in the long run that probably would't be the best choice for our family. So I try and think of it that way rather than how much I hate it that we are only all together 3 days out of the week. I can so see how a families strength is tested when they have a sick child.

I just want to encourage you all again to be grateful... I realize how it can be hard when your baby screams all day, they won't feed properly and your not getting any sleep. If things had been normal for us I'm sure I'd be making the same complaints. But they are not normal... I would give anything to have 1 normal day with my son... 1 day where he isn't hooked up to anything, I can take him home put him in his crib, cuddle him on our couch and see him playing in the living room. I so often pray before I go to bed that I can at least have a dream of doing those things. So many of you do have this and you take it for grated, and I don't want this to sound mean, I want it to open your eyes so you feel how blessed you truly are!  Its incredibly hard living each day not knowing when you will have your son home, but in saying that it has also made me a lot stronger in my faith. I have no choice to lean on God, and believe with everything I have that he will heal my son. 

Look around you today, who can you help? who can you bless? who can you encourage?

Smile and be happy. I'm sure you can think of at least 5 ways you are blessed!

Here is my list:

I am Blessed 

- I have an amazing husband who does everything he can for us

- I have a great support system (family and friends)

- I have an amazing son who lights up my day

- I have the ability to leave my son (even if I don't want to) and know he is well looked after by amazing staff

- There is a drug that is helping my babies bones grow and become strong!

More Amazing X-rays!

This is going to be one of my shorter posts, not a whole lot has happened but I know its been awhile since my last post. I wish I could say this last while has been easier but in some ways its felt like the hardest yet. I had been pretty sick with a cold and decided to go home for a night to try and get some rest. When I left everything seemed normal with Deklyn, but on my way back to the city I find out that Deklyn was having some problems and they were pretty sure he had a chest infection. When I get to hospital, I was informed that Deklyn was going back to PICU where he can have 1 on 1 care while he is so sick. I was pretty upset in the moment, and it felt like a HUGE step backwards. I am happy to say that our stay in PICU wasn't very long and we are now back in our little room where we feel a quarter way closer to having a normal life! If your wondering how you can pray for Deklyn,  please pray for his heart rate to come down. Normally while awake he will be anywhere from 130 - 150 but since this infection its been anywhere from 150 - 200.  And as usually please pray for his complete healing. Right now, we feel like we are no where close to coming home and I can not tell you how sick I am of being here. I am so grateful for everything that has been done for us here, but I am so ready to get out. Most people are telling us not to expect to be home for his 1st birthday but I am definitely standing in faith that we will be!

I know Deklyn will be completely healed, and I am so tired of doctors coming in and giving zero hope. Doctors telling me in their eyes there is no chance of him ever being off the ventilator. 1) He had no bones, look at him now 2) He is improving, its slow but there are improvements! 3) Our God is healer!! As often as in my head I feel like I have given up, I have never given up in my heart. I will see my son come off the ventilator this I know with all my heart! Some people might think I'm crazy, that you need to look at the facts. I don't think like that, and I don't think there is any reason not to have hope! 

I've met alot of new familys here in the childrens hospital, and if you have never had one of your own children in the hospital you have no idea what these people go through. There are heart breaking stories here, and they need your prayers too! Please pray for the families with children in hospital, it is a life most parents never expect to live and its one of the hardest things I think someone can go through. 

To cap off this post on a high note, I have some more x-rays to show! 

Here's just a reminder, his December 20th x-ray and  here's his August 28th x-ray! Incredible right??

And here is his left Leg the 1st one is from December 20th and the 2nd is from August 28th. They getting much longer!!

And here is his left arm, the first is from December 20th and the 2nd is August 28th! Amazing :)

You can not look at those X-rays and not be amazed! I am so happy when seeing his progress, and I know there is only more good things to come. Its the waiting that kills me! Its been almost 9 months, and unless you've been through it yourself you have no idea what it is like! I would not wish what we are going through on anybody, its the hardest experience I've ever been through but I am also grateful for the chance to be a part of something as huge as Deklyn's life!

Patience... Easier Said Than Done...

Like usual the past few weeks have been filled with many up and downs! But to start things off I'm sure you are curious on how the CT scan went. As I mentioned in my last post they wanted to do a CT scan to see if his lungs are growing and to see if they could get a clear picture on if they think he'll need to be ventilated long term or not. Well I'm incredibly happy to say that the CT scan went amazingly well. It was the quickest procedure I've ever been through with Deklyn! Everyone seemed very happy with the results as well! I've mentioned in previous post that Deklyn has Pulmonary Hypertension, with that condition usually comes Pulmonary Hypoplasia which is where the blood vessels in the lungs are different sizes, so they were expecting Deklyn to have that and he did not! They also could tell that there was lung growth so we were so happy to hear that even though we knew his lungs are growing it was great to hear they could see it!

There was another very exciting thing that happened this past week. A while ago one of our nurses approached me and just wanted me to know if we wanted, we could plan a day where we could take Deklyn out of his room and into the play room for an evening! I was pretty excited  to hear this because as far as I knew we wouldn't get to have Deklyn out of his room until he was on the portable ventilator. So we planned a day and thanks to the help of many different hospital staff, for the very first time Deklyn left his room  (not for a procedure!) and also for the very first time since Deklyn was born we got to have all my husbands family in the same room. It was a very exciting day! It was nice to finally be at a gathering and have my baby there to take care and show off! I'm not expecting this to be a regular thing but even if it just happens this once till he's on the portable vent, I am so grateful that we got to do it even once!

It was also my birthday this week and I've got to say it, I am so blessed to have the most amazing husband I could ever dream of having. My husband goes back home during the week to work, he gets to come back here to be with us Thursday nights and stays till Sunday so I was only expecting him in the evening but when I walked into Deklyns room in the morning of my birthday he was sitting there waiting for me! It was the most special thing he could have done for me and a totally made my birthday so special!

This weekend, although it had a lot of positives it had a few hard times in it for me as well. Although I try my very best to be a positive person, I'm not always that way. A few people we know had babies, and I always try my very best to put on a brave face and be the happiest person in the world but every time I hear someone's pregnant or someone had a baby I feel a hurt inside that is hard to describe. Not that I am not incredibly happy for the couple, but I guess I'm still not over the loss of not having a normal pregnancy and not having a normal "after babies born" experience. I don't mean to sound negative, and I know I am not the only one this has happened too and I totally know things could have been much worse than this! I'm really just being totally honest here! I would never wish what has happened to us to anyone else. I know I tend to seem like I have it all together and I'm handling everything so well, and I think most days I do. But there is the odd day where I feel like I'm completely falling apart and just can't seem to get myself back together.

When Deklyn was first born there was no doubt in our minds that we'd have Deklyn home in no time, and don't get me wrong I know we will have him home. Before he was born we said we'd be home by christmas, after that we said we'd be home by our sister's wedding, after that it was by Sheridan's birthday, then it was by my birthday. And I really don't mean to sound like I've given up hope, I really haven't! But when you see these goals you set and decide to believe that you'll see them happen, its kinda a kick in the stomach when you don't see it happen. I know everything will happen in good time, I know I am blessed to be where I am, and have so many things to be grateful for. Some days its just incredibly hard not to just focus on all the things you want and all the things that you think are best for you. I know many good things will come of this and I just need to be patient.. Patient is a word I have come to hate... haha!

(Deklyn's cousin turned 3 this last week and this was a party hat they gave us to bring back for him)

I truly appreciate everything anyone has done for us, whatever its been! You are truly helping us get through this, and on days where I feel like I'm totally alone I try my best to remember all the amazing things God and you guys have done for us. We do have some incredibly hard days, but really most of them are good! Some days I really wish I could see where this all ends, but really what would the fun in that be right? I'm just still learning to trust, and try my best not count on my own strength cause I know if I do that I'm going to be burnt out in no time!

 If there was one thing I could say, or one thing I want people to learn from what I'm going through it would be this: Be grateful... I see a lot of people everyday living lives they never thought they'd live. People who'd give anything to sit with their child on there living room couch rather than on a hospital bed. People who'd love to sit up all night with their crying baby rather than lay beside there beds hearing the sounds of monitors beeping. People who wish they could hear their babies cry or their children talk.  People who'd do anything to have their child healthy. I've also met a few people who'd give anything to have their child alive again. Be grateful for what you have, even if you think your situation is the worst out there I bet you can find someone who's situation is bit worse than yours. In saying all this, I'm meaning it in an empowering way not to make you feel sad! I want to encourage you to do what you can for others, and if there is one thing I've learnt its that being sad and unhappy is not a very fun way to live! Be joyful in all things! You'll see how your situation looks through new eyes if you choose to be joyful! But like I said, I am learning in this as well!

Strong & Full of Goodness

I couldn't think of a good title for todays post, I usually do have a very hard time with that! So today I thought it would be a good reminder for me to title it Strong & Full of Goodness because that is the meaning of Deklyn's name. And that is exactly what he is, he is the strongest little boy I have ever meant and in turn helps me to be strong, and if you have ever seen him in person or even by looking at his pictures you can tell how "Full of Goodness" truly suits him! As usual Deklyn has been doing so well! He's just been so happy lately and just yesterday he's started moving around a lot! I got there in the morning, lifted his blanket and he just kept kicking his left leg like crazy! It was so cute, and ever since then he's been moving his legs and arms so much more! I love it! Its kinda like a little re-assurance from him. In the last few days he's also been more awake and playful which is super fun! Its so awesome to see him happy and interactive, it definitely makes it a lot easier on me!

I've had a bit of a stressful last few days, I've had lots of doctors and medical staff come in and see Deklyn and as usual they speak the worst. And it always seems to be doctors who just met him, they say how he's doing so badly ventilation wise and how it looks like he could need to be ventilated for his whole life or at the least a very long time. Maybe I should be more assertive and just say "No he won't" but I tend to just listen and in my mind say those things. I'm getting very tired of being told "Its gonna be a long haul", Yes I've been told that since I found out almost a year ago that there was problem with my baby... I've been sitting here for almost 8 months. I also know we are over half way done so you can stop saying "Its a long haul". Some days I think I could just about go crazy here... but then other days aren't so bad! I think I've just had a long string of bad ones...

A lot of people have been saying to me lately, "You must be so excited, your so close to getting to go home!" and yes I am very excited! Words can't describe the feeling when you've had your child living in a hospital for over half a year, just the thought of getting to go home is terribly exciting. But in that same moment it is extremely terrifying. Having a child dependant on machinery is so scary, at least for me it is. The only thing that gets me by is knowing that this isn't forever. I know I'll be able to do it, he's my son and I'd do anything for him but it doesn't make it any less scary. 

One of the things that will be happening very soon, is Deklyn will be getting a CT scan. They want to know exactly how big his lungs are so this will actually be happening hopefully sometime this week. But we know how it goes when your told when something will happen expect it to happen 2 weeks later! He will need to be put under for this which I really don't like. I thought it'd be as simple as an x-ray but its not. Those of you praying for us, could you please pray for this to all go well and that we also have good results back from the test? Also for peace for us, I hate seeing my son be wheeled away where I can't do anything for him. I would really appreciate it! On a less serious note... you could also pray that they don't choose to put the IV in his head, his hair is just starting to grow back so nicely haha!!

Its feeling kinda surreal that only a year ago I was 20 weeks pregnant and going to my ultrasound. Never once thinking anything could possibly be wrong. I will never forget that day, and I think its fair to say it was the absolute worst day of my life. I have never felt that low, and I have never felt so crushed. For the next few days after I would wake up every morning crying realizing that what I had been told wasn't a dream. It didn't take to long and I was happier again and believing that everything would be fine. But every time we went back to the doctors office was another blow and I was back down on the ground wishing I was anybody else but me. Now looking back although it might sound strange, I am so happy that I am me. I have learnt and grown so much, and I feel I appreciate things in life a lot differently than other people who don't have to go through things like this. Although things have gotten much better, I still have those days. In the same way that Deklyn brought me through my pregnancy he helps me in these hards days like today. During my pregnancy it was his wiggles and pokes and now all it takes is just looking at him and I know things are going to be ok, just like I've made it through this past year, were going to make it to next year and look back in amazement! I just can't wait for next year... haha!

These next few months are going to be filled with lots of learning and overcoming a lot of fears! I'd like to ask for your prayers as we are getting closer to home. It is super challenging being a parent to a child with extra needs and it definitely takes a lot of energy (not saying being a parent to any child doesn't!). Some days I feel like I'm back in high school having to learn so much! But I know with God giving us strength we can do it. I just wish I could go ahead in the future and see where we are a year from now, it sure would make things easier!