Blue Juice

So far so good with Drew's feeding studies. Blue seems to be our theme colour. Blue milk is ok, blue clothes are nice, blue hospital gowns are expected, blue baby isn't so Smurfy.

Hope and such

Karla mentioned in a recent post that a genetic test which we expected to confirm Drew's diagnosis was, in fact, negative. That news came as a surprise to us and Drew's medical team although it hasn't changed his treatment. I was hoping for confirmation mostly to give us something to hang our hats on, but also because of the possibility of finally getting a diagnosis for myself. For those of you who don't know me, I've been sick since my teenage years and I have never received a specific diagnosis for what I have. As a father you like to see yourself in your children but this is a bit much.

The Bible is full of promises; comforting, inspiring, beautiful but also sobering, humbling and frightening. In fact, the latter make the former that much greater. We've received some great messages this past week reminding us of many of God's promises. One of the themes throughout the Bible is the promise that God provides in our times of need. His mercies are new each day, He is our strength in times of weakness, He provides that which we are lacking. Part of why I was so disappointed with Drew's negative genetic test was because I placed a measure of hope in its outcome. I would know why he has breathing problems and would probably have more certainty for the future. If my hope rests on anything other than God I will eventually be disappointed.

This has me thinking about situations. It is easy, at least for me, to become a situational relativist. I compare my situation(s) with others to measure the relative niceness or difficulty of my situation. Sure my baby is sick but he isn't as bad as some of the other babies in the hospital. Or, this sure sucks. Why can't I have a normal healthy child like those other new parents going home after delivering? That is beside the point. We have been given this situation(s) and God will provide for our every need. And I don't say this as a matter of if. God has provided our every need and He will see us through this and anything else that comes our way.

So if we put our hope in anything but God, or we are controlled by our situation(s) and their relation to other peoples situations, we will be left hopeless. We shouldn't ignore them or brush them off as easy when they're hard. We can be comforted by and seek strength from God because He promises it. Easier said than done. I pray that we don't try harder but that we react in faith. And that we remember and are thankful.

Please don't mourn us. Drew is happy and healthy (for the most part). Our days are filled with laughs and I poke fun at Karla just as much as I always have. Don't try to imagine what we are going through. Pray for us and be thankful with us. Place your hope in God and embrace your situations while being aware of others situations. And if you're going to have a beer make sure it's craft beer. Seriously.

db

Mobile watching

Yup, it's true what Mommy said. I had a tough week last week. But it wasn't all bad and I'm feeling better. I even got to cuddle with Uncle Giddy last night! Life is good.

Here I am watching my mobile. I love watching the animals float above me, but mostly I stay interested to oblige Mommy and Daddy. They are kinda weird, those two. As long as my soother is close by I stay happy. Do you like my fancy belt? It keeps my ventilator tubes nicely stable. Sometimes I grab them just to make sure they're firmly attached. You can also see that I'm hyper-extended to keep pressure off my chin and neck. It's supposed to be uncomfortable but I don't mind. I'm quite tough by baby standards, at least that's what everyone tells me.

Anyway, thanks for praying for me. And thanks for praying for my Mommy and Daddy. And thanks for the great crib toys Renna. I know you're bigger than me but I'm growing really fast so you better watch out (by the way I think you're really cute).

Here's a video of me watching my mobile. Notice how I can stay focused on one animal all the way around. It's a new trick I learned and I'm kinda proud of it. And I'm not that stinky, Mommy is just sensitive. Daddy thinks I smell fine and cheers me on every time I make a stink. Daddy sure is cool.

drew

bonus snacks

Until Drew passes the first of his feeding studies tomorrow he is only allowed to have "a few drops" of milk in his mouth at a time. Lucky for Drew, Mommy's interpretation of "a few drops" is perhaps a little more generous than the nurses intended.

kb

The bad, the good, and the soother count

Happy Easter everyone!

This week has had a lot of ups and downs:

Drew has started to have severe breath holding spells when he is upset. He can hold his breath until he turns totally blue and passes out, causing the alarms to go off and the nurses to come running. No one seems to know why he is doing this or what can be done about it.

We also got results from the genetic test that we hoped would confirm Drew's suspected diagnosis. Surprisingly, the results were negative (apparently genetics doesn't have the answer for everything?) so now we don't know why he has this breathing problem. It's frustrating for us, but doesn't make much of a difference for Drew, since his symptoms need to be addressed regardless of the cause.

The great thing is that we have started to be able to do a lot of Drew's care ourselves. We do most of his trach care, with nurses watching in case of an emergency. We can now pick him up with just the two of us, instead of having to have a nurse put him in our arms. And yesterday we gave him his first real bath to wash off 6 weeks of accumulated stinkiness.

Drew is usually awake for most of the day, waking up around 8 or 9 am and going to sleep around 8 or 9 pm, with convenient naps around lunch and dinner (I'm not sure what kind of trouble he gets into at night). He loves reading books, watching his mobile, spitting his soother onto the floor (once they hit the floor the soothers get replaced; the soother count for this weekend? 5, so far) and spending hours contemplating his musical aquarium (aka. his "crib crack", another loaner from dear Renna).

Here is a video of him helping get ready for his bath by unhooking his ventilator.


kb