Walking in the Fire...

So I know I just posted two days ago, but I thought everyone would like to know that even though yesterday was a rough day, today was a great day! Not only did we have many fun visitors (Grandma, Miss Rhonda, Ashley Manross and her daughter Kensington) but we had a day full of laughs, giggles, and a few squeals! I seriously haven't heard the squeals for months and wasn't sure if she could even still muster up the strength to do it, but alas, they came out today! She dropped a few times, but nothing we couldn't recover from and we just enjoyed spending time together. Not that we don't every day, but today felt different for some reason. I tried to leave a message on daddy's phone with her laughing, but I don't think anything was audible on the voice message except for me making ridiculous sounds to try and get her to laugh, hahaha.


I also forgot to add a picture of the new shelf in her nursery and since I am up waiting on her nebulizer treatment to finish, while everyone else is asleep, I thought I would do another post with pictures. Below you will see the awesome shelf Kyle's family bought us from Ikea for the nursery! I had a lot of fun going to Target to fill up the squares with bins to add some fun color to the room!!! I almost measured everything before I went to the store to make sure I got stuff that fit since all the squares are different, but then I thought, no way! that's not an Ashley thing to do... that's something Kyle would do :) I lucked out big time! Everything fit perfectly and the colors are so fun and cheerful. Plus, they had a bit of "girl" to the room since everything was gender neutral.


So let me explain... On the top from left to right: the frog humidifier, the scale to check her weight with a stuffed animal on top, her gray suction machine with a lovely collection of mucous in it, and her pulse ox machine (the white box which has two black screens with numbers - the top small black box contains red numbers which represents her oxygen levels that I talk so often about and then bottom black box contains green numbers which represent her heart rate) and one of those cool fiber-optic fun lights. Second shelf from left to right: extra supplies, the big green polka dot crate has her suction catheters that we go through daily, the solid green crate has her feeding bags that we go through daily, the little pink box in between has misc. supplies like tape... and then the last box contains the gray cough assist - aka the scream extractor (for those of you who have seen Monsters, Inc.) or the big elephant. Small shelf below just has misc. medicines, emergency supplies, ambu-bag, etc. Bottom shelf: first purple bin has all extra tubing (for oxygen, suction, etc.), long green basket has catheter kits and vent bags, second purple bin has all of her padding, gauze, etc. like mepilex or duoderm and then the last little pink box is random medicines. To the left of the whole shelf unit, you will see a weird looking gray machine which is an oxygen compressor (I think it is called) where it basically takes oxygen from the room air and purifies into pure oxygen and also humidifies it. This is where we would go first if Skylar needed O2. What is not in the picture on this same wall are all of her travel oxygen tanks (7 total) stuffed into the corner by her changing table and then her IV pole with her feeding pump by her crib. Somehow, it still manages to look somewhat like a nursery :)

Random change of topic... my small group leader from our church always used to find a way to reference Shadrach, Meshach and Abednego. We would always laugh, because in his Brazilian accent, he would say, "You know guys..." and we would all smile knowing the rest of his sentence would finish with, "it all goes back to the three amigos." to which we would all bust out laughing. He would then feel the need to defend himself and explain how awesome these guys were, but it made for good conversation and it actually did relate most of the time. So as I am sitting here doing my best to stay awake waiting on her treatment to finish (I got a late start on it) I decided to look up stuff online relating to the Bible instead of actually reading it. Sometimes, I can read it and not make any sense of it, and I felt like tonight was going to be one of those nights... so here I am on my computer. I had to think - what do I search for or what do I read? If I am not reading a certain book, usually I will just flip open my Bible, thumb through some pages and see where I end up. Not saying that God always speaks to me this way, but a lot of the time I end up with something very applicable or relevant. I guess some would argue that it all is that way, but back to the point. My small group leader had referenced "the three amigos" so much that I decided to google search for them to see what more I could learn.

If you don't know the story, I suggest you take some time to read it because it's a really cool story (and a great veggie tales movie, lol), but basically this King forced everyone to worship the gold idols and anyone who didn't would be thrown into the fire. When these three men refused, the King threatened them and they replied, "If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king. But even if he does not, we want you to know, oh king, that we will not serve your gods of worship the image of gold you have set up.” This is from Daniel 3:16-18 NIV. He ordered his strongest men to tie the three up and throw them into the furnace. The king made it so hot, that the men who threw them in were killed. He quickly asks for confirmation that there were only three men thrown into the fire and notices a fourth person "...walking around in the fire, unbound and unharmed, and the fourth looks like a son of the gods."

So as I was reading this, and a blog I found about this as well, this story became very personal. These guys walked faithfully, knowing God could save them but open to the reality that if He didn’t, it would not change what they believed or who they believed in. The blog stated, "Unwavering faith creates amazing experiences with God. His presence is always with us, even in the flames of life." I couldn't agree more. I feel like our family is threatened by the flames right now. There is nowhere to run and no other option but to face them head on and hope that God chooses to save us from the furnace. BUT, if not, we will still believe He is God and we trust His word is true. Thanks for reading my late night ramblings :) Her treatment has been done for a little while now so I am off to bed!

***One quick thing, if you are planning to come to the fundraiser make sure you sign up here to reserve a time with a photographer! If you don't know about the fundraiser yet, there are a few details on the "help fight" page of Skylar's website, but you can find pictures and even more details here. Thanks for bearing with me as I am constantly learning and sharing my raw thoughts with you through the process. Peace.