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!