Friday, May 25, 2007

FRI thoughts

Again it is Friday. However, this time we have what we need - but, yet again, if we were to choose to take Emily to the ER, it would be on an inconvenient, long weekend. Typical. I'm not being negative, it's just typically how this works out. It's never a Monday or even during the day at all. It's at night and right at the weekend so there are no Dr's that we want to see at the ER or on the floor.

On a lighter side - Emily is having a relatively good morning. She is obviously sick, but managed by her team of doctors and nurses (us) here at home, she is doing ok.

Some thoughts that will seem unrelated, but they are - bear with me (these thoughts are easier said than typed):

Diana and I were watching the Season Finale of LOST the other night. That show always makes me think. It seems, to me, the entire show is about what happens when people can only focus on trying to change their circumstances -- their "Island," if you will. At the end of the show, those that were focused most on getting rescued were suffering the most once it finally happened. They were so discontent with their circumstances on the island that they learned the least about how to be happy once they were off.

If I focus too much, out of discontent, on changing our circumstances, when they do change I will have learned the least from them. Most importantly I will not have learned how to be content with what God has given me.

Peace <><

Thursday, May 24, 2007

Sick :*(

Emily is sick. Her heart rate has reached the 180's this evening, her O2 sats keep dropping (mostly into the upper 80's, but a couple of times into the 70's), and we are struggling with the Dr's to get her antibiotics. They were supposed to be called in earlier today, but now it is 12:04AM and we've had to call them a few times to get them to call in the meds. ARGH! I think we need to find a new Pediatrician b/c ours is just too busy - which is a shame b/c he has been incredibly good to us with Linnea before and now Emily. When you call a Triage nurse and tell them that your daughters HR is in the 180's they don't want to call in a prescription, they want you to go to the ER.

Back to the point though - Emily's sats have been dropping over the last few days so we've ramped up her treatments, but we are going to have to do more. This came on sorta fast and looked like teething type stuff or a little snotty nose kid thing. That's definitely not the case. Please pray for her and for us. Not sure if we'll end up in the ER tonight or not.

Peace <><

Saturday, May 12, 2007

Really Fun! Emily Giggling

Everything has been going SO well with Emily lately. As you can see and hear in this video she is incredibly happy. :) She's been giggling every day, laughing at Dora - enticing us to play with her -- it's been great! The MaxEasyS medical chair has made our lives MUCH easier with Emily. We took her to church for the first time since her hospitalization last week and she did so well. Heading back home she sorta crashed pretty bad, but that was due to the fact that we need a different vehicle so we can accommodate her like she needs. Argh! They're $50k new and good used ones are difficult to find. :(

Emily's nursing has continued to be very helpful. Diana is able to get more sleep and we are able to spend more time with each other and with Emily without being her nurse 24/7. It can be tough to have new people in your house all the time, while you are sleeping, if you go out, etc -- adding different personalities and cultural differences don't necessarily make things easier in the midst of this life that we live. But, they've been a blessing and we are happy to have them.

Let's see, what else... I screwed some eye-bolts into our ceilings and we bought a hammock swing for Emily. Oh man does she ever think that is fun! We swing her back and forth, side to side -- sometimes she'll just lay there and watch stuff - It's great! She swung in it for 2 hours the other day while I was doing stuff around the house and swinging her every now and then. She was just as content as can be.

Annabelle is SOOO busy singing, drawing, and coloring she hardly has time for anything else. She continues to be such a selfless little girl, always loving Emily and sacrificing her own comforts for Emily. She is incredible.

Diana and I continue to work out our responsibilities, navigating our way through what seems to be an impossible life to manage at times. We're a good team - but often times even perfect team mates don't understand each other. I'm glad she's my wife and my children's mother... I'd never wish for anything different. :)

A couple of things we are working on:
  1. House that is WAY easier to accommodate Emily in
  2. VAN, VAN, VAN (we have to get rid of ours and purchase a new full-size, 10 passenger van)
  3. Non-profit setup - probably going to be called "Eminnea's" (Emily and Linnea mashed together - compliments of our friend Bob Gillette - thanks Bob!)
  4. Praying about and considering how God wants me to spend the 11 extra hours I have per week now that I am working Part-Time. Somewhere in there we have to make up the income difference. Please pray with us in this.
  5. Diana is going to start some classes towards a nursing degree either this Summer or in the Fall. Very exciting!
Ok - I had some inspirational things on my mind to say in this post, but I don't remember anymore. I'll re-introduce a phrase I told a friend of mine when he was worried about a lack of direction in his life -- "You are where you are because that's where you are!"

Peace <><