Deklyn is 4 Months!

Again... Sorry that it has been a while! Deklyn is doing pretty good. He is still having quite a bit of lung issues, I know every child is different but we've been told with other babies in this treatment in  the 4 to 5 month stage was when they seemed to see good strides forward so I'm really hoping and believing we will see that. We were told if this month doesn't go like that for him we are going to have to talk about issues he may have related to his small lungs and whats in his future. His lungs are just so small they aren't sure how things are going to go there, but we are just believing Gods going to work huge in this area for Deklyn in this next little while. People who are praying for us, we would love for you to join us in prayer for his lungs to strengthen and grow so we can get him off that ventilator in the next month or 2!

As you can see in the picture above, Deklyns lost the tape and has got a neo-bar holding his tube! His face was getting so rashy from the tape coming on and off again they switched to this in hopes of his face healing up. Its really nice to see his top lip and him moving his tongue around! 

This evening we went to the "be my hero event" capital campaign, we were asked if we could share a little of our experince as Dr. Greenburg (head of research for HPP) was going to be speaking there. Its kinda like a fundraiser for research.  I really didn't know what to expect but really wanted to go, we have been so blessed by research and if we can help fund raise I really wanted to. We get there and see our names are in the program as 'special guests', we weren't expecting us being there to be that big of a deal! Everyone was dressed really nice, I had never been to such a fancy event before so we really felt out of place but it was actually really fun. Not to mention the food was amazing!!

 I do know how lucky we are, but it just really hit me this evening at the event. Dr. Greenburg was showing pictures and video of the previous babies treated and she got to Deklyn, mentioned that he is the worst case they have seen and showed his first x-ray. Even though I've seen it before I couldn't believe how bad it was, virtually nothing considered bone in his entire body. Dr. Greenburg went on to say how his x-ray looked just like the x-rays of previous babies that died shortly after birth from HPP before this cure came about. It really just hit me and I thought why us? Not that I'm not incredibly grateful that it is us, I just felt very humbled that we get to experience our little Deklyn grow up, take him on trips, go for walks with him, enjoy watching him as he learns and explores.

I have a little heart warming story to end off this post. A few weeks ago, a nurse from NICU approached me and told me that her son's (who is in grade two) teacher started quilting and the class wanted to make a quilt for a child in the hospital and she thought we could be the perfect candidate for this. So the other day the teacher and 2 of the kids from her class came to deliver the quilt and it was just so amazing. Each child in the class made a special patch for Deklyn. The teacher said her idea was actually just to make a quilt for the class but the kids said they wanted it to go to someone and they were all very excited that it would be going to Deklyn. The 2 kids even wore dress shirts and ties because they wanted to look good for Deklyn. I just thought it was so incredibly sweet, and I'm just amazed with how people are reaching out to us. I never thought I'd be the one being reached out to.

To Be A Light In The Dark

This post isn't really an update.. it is more to share my heart and how I am feeling lately. My heart is feeling very heavy today, I can't quite put my finger on what exactly is bothering me. Deklyn is doing fairly well, his lung is still collapsed and hasn't really made much improvement but he has been really content lately! I've really gained a new perspective on things since our son was born. I do have my days where I am very sad and all I want is to take my son home and for things to be, as we see it 'normal'. But often my heart isn't hurting for myself, or my family. Its hurting for the ones around me. I was talking to a mom as I left the hospital today, she didn't tell me what was wrong with her daughter but the hurt I felt coming from her eyes made me feel an incomprehensible compassion for someone I had never even seen before. I asked her how long they had been in the hospital, almost as if she was in pain she said "It will be a week tomorrow" In hopes of giving her a bit of cheer, and to know she doesn't have it the worst I said "Oh, I know its very hard being in a hospital. We've been here for almost 4 months now" I'm not sure if it helped, but I told her I hoped her evening would be better than the morning she had and we parted ways.

There is really nothing I want more than to make a difference and I believe with the situation I am in I can. Hurting people want something more, and if I can show them love with a smile or even just small talk I am more than happy to do that. The other day as I was leaving the house to go see Deklyn a young girl and her dad came and went to go see the woman in charge of the house. As they walk in I hear the dad say "Hi, this is my daughter and this year for her birthday instead of gifts, she asker her friends to bring money to donate to the Ronald McDonald House" I was amazed... when I was a little girl I loved my presents way to much to ever even think of something like that. Many of us adults wouldn't even do something like that. 

Days like today, I feel so out of strength. I remind myself of how things could be much worse and how lucky we are. I can't imagine what some families are going through. If anyone would like to pray for me, please pray that everyday I be completely open to what God has in store for me that day and to keep my mind on what is important. I know God can use me where I am, and I don't want to leave here feeling like I could have done more. Please pray that I would be a light in a place where lots of hurting and lost people are. 

I'll leave you with my latest favourite picture of Deklyn... he sure knows how to let you know how he's feeling even if all he has is his eyes to show it with!

New Room For Deklyn!

Sorry to all you huge fans of my little boy! I know its been a long time since I've posted, my laptop hasn't been working properly so thats made it a little less easy for me to have time to make posts. Quite a bit has changed since my last post. Deklyn is now in the Pediactric Intensive Care Unit (PICU) We moved there last tuesday so we have almost been there a week now. The change has been amazing for Deklyn and us! Deklyn now has his very own room, so we have much more space and there is a tv for us to pass by the time a little quicker haha!

When we first got there the change in Deklyn was amazing, I wasn't expecting the move to go terribly smooth but it really did! He's had a tempature for quite sometime now and almost the instant we got in his new room it started to go down. He was also very content the first few days there and his heart rate was amazing compared to in NICU ( normal was anywhere from 130-160 first few days in PICU it was anywhere from 115-130) We also got to put him in his swing for the first time (because we finally had room to use it) and he just loved it! After waiting close to a month in NICU for a new tube for Deklyn, the 2nd day in PICU they got an IV in him and got him a new tube. He had quite a large leak again and they felt a new tube would help his collapse issues and start getting him on the right track for breathing on his own. That day his collapse totally corrected its self! It really felt like this change was move us in the right direction (and hopefully fast!)

Now just a week later, he's not doing quite as good. I still feel this change was the best thing for him, but he's got a tempature again, heart rates high, and right lung is completely collapsed again. I'm not terribly concerned, I know this is just another bump in the road but it sucks to see him doing so well and just a few days after back where we started. I spoke with one of the doctors and she said the collapse is something that should just correct itself over time as his ribs and lungs get stronger but right now we'll just have to keep him comfy and happy as he gets stronger.

Well thats pretty much it thats new for Deklyn right now. The change has been wonderful for him and us, although its tough saying goodbye to the staff and families we've gotten to know in NICU. We are just tring to be patient and wait for the day we can bring him home. It can be pretty overwhelming some days but trying to stay postive and not thinking about the future, thats what helps me get through on the hard days. If anything I know this siutation will help me to never take forgrated the little things in life that most people don't even notice that they get to do. Just being away from my husband each week and seeing him again on the weekends has renewed my appreciate for him. I feel like a totally new person than I was before I was pregnant with Deklyn, I would say in almost every way its been good changes.

People who like to know what they can pray:

Strength for Deklyn's ribs, that his lung will stop collapsing and be able to heal

Peace & Patience for Sheridan and I as we wait

Also, strength for us as we go through the hard days, I know that there are more tough days ahead and as we go through them our hearts hurt for our little boy and the dreams and hopes we have for him

I also want to thank everyone of who has helped us out in anyway, in the past few weeks we've had lots of things dropped off at our door and if you have done that please know you have blessed us greatly!