Thursday, August 12, 2010

August 12: Day +41

The cover of the Minneapolis newspaper today! That is Keric, patient #4 in this study! (That's Dr. Wagner's smiling face above Keric)

First off,

Happy Birthday, mom! You are a shining example of unconditional and unwavering love and support. Your ability to be totally present in the moment despite whatever else is happening in your life makes anyone in your presence feel like the most important person in the world. Thank you for teaching me all that you have in life, and I continue to admire you and learn from you. Your ability to laugh in the most intense moments reminds me to take my work seriously, but take myself lightly. What a gift you are to me. Thank you. I love you!

So, today was another banner day for Bella! She was 2 for 2 on pressure support trials when we left tonight. They took her off the ventilator twice today for 90 minutes each time, and Bella initiated all her breaths without any trouble at all. Her heart rate, blood pressure, and oxygen saturation all remained as if she was on the vent! She did really well. All the docs are quite happy with her progress, so....

We are tentatively scheduled to take out her breathing tube on Monday!

They would do it sooner, but they don't want to do it on the weekend. No problem, it gives Bella a couple of extra days to ramp up to 100% independence. On Sunday, they will most likely turn off the vent for the entire day and let her breathe on her own so that when they take the tube out on Monday, it's nothing new to her.

So, thank you for your ceaseless prayers, intentions, thoughts, vibes, concern, and attention. We are making great strides right now, and it feels really great to feel like at long last we are genuinely getting better and not getting worse or just staying the same.

In other news, the first research paper concerning the clinical trial we are in was published TODAY in the New England Journal of Medicine. Several articles popped up on the net and in print today about the research. Here are links to them: Click here Click here
StarTribune (Minneapolis paper): Click here Click here
U of M: Click here

And for those of you that wanna read the raw data:

New England Journal of Medicine: Click here

(Thanks to Patrice Evans for posting these in such an easy to follow way on her blog, and thanks to all those who sent the links to her originally)

We are proud to be a part of something so big. This procedure may open the doors to 400 other genetic diseases of the skin. How AWESOME is that? There really is so much to be grateful for... when I step out of the trenches and look at the big picture, that is. It's tough to keep it all in view when you are staring at machines keeping your baby alive day after day. When I am back here at RMH, I can see a little bit above the tree line at least. I had an old friend from 10-15 years ago call me on the phone out of the blue tonight to ask if I'd been on today, and in some way did we have anything to do with it. Well, we're not part of that research paper, no, but we will be part of subsequent papers, yes, and we are knee deep in it all as we speak! He said he just had a gut feeling when he saw the article that we'd be involved in such a groundbreaking thing. Thanks for that acknowledgement, Trevor!

Ali pretending to be one of the fish at school...

In still other news, I've been walking with mommy to pick up Ali from school these past two days, and it really is the cutest thing on the planet earth. We walk back to RMH together, eat, then walk to the hospital together. Then, mommy hangs out with Bella and daddy takes Ali to one of the various play areas to help her blow off some steam and get some daddy time in. Then, we reconvene in Bella's room and all hang out together for a while before the three of us head back to RMH together. I am grateful for this because once Bella "wakes up," I will need to be by her side 24/7. Since that seems to be coming down the pike pretty quickly, I am taking advantage of these moments and storing them in my memory for good.

There is a difference between just going through a day (like your video camera is on, but not recording), and creating and connecting with the day (like you hit RECORD on your video camera). I used to go through days, weeks, months without recording. Now, I try to record as much as my brain will let me, because (hopefully) there will be no other summer quite like this one.

Do you take time to record the events of your life?

Good night.


  1. Great analogy. I find myself so often lately sitting back and watching my kids play and realizing how beautiful it is. I've been literally recording it for fear that I will eventually forget it. But at that moment I really do step out of the daily grind and just enjoy seeing them play and grow and learn.

    I am so excited to see what next week holds for Bella. Watching Daylon awake on his blog today was amazing.

  2. Go Bella! What a strong girl. I can't wait to see pics of you and Ang finally holding Bella again. Bella really is part of a miracle and because she helped pave the way, children of the future won't have to suffer as much.

    Take Care,
    Amber McLaughlin,CA

  3. Great blog tonight, Tim! I too try to take it all in each and every's so important to cherish the moments! I'm soooooo happy to read that Bella is coming along- and I'm so grateful to our loving Lord, who is watching over her and helping her little body breath on its own...WOW...awesome!
    Earlier today, I read the link you posted on your FB page, about the research program you are in. I was just amazed and kept saying, 'Thank you Lord for giving these doctors the wisdom, knowledge and strength to help heal these babies!' Truly a miracle! Give Bella hugs & kisses from me...October is only 7 weeks away ya know...Bella's comin' down the home stretch and you'll be back in CA sooner than you know it!!!
    Sleep with the angels...I'm praying and giving thanks to our Lord for his love & protection over Bella!

  4. Jack and Molly's NanaAugust 12, 2010 at 10:39 PM

    I just KNEW today would be another great one for all of you! Your mom is probably in tears over your lovely remarks; I wish her a happy birthday, too. And you've obviously taken those lessons to heart - otherwise you wouldn't be able to do what you do (and so it so well).
    I also watched Daylon's video; it's amazing. And I know you'll be making a similar one very soon; can't wait to see that one, too.
    Have a wonderful day!

  5. Yay Bella!!! Have been praying daily for your family!! I find myself checking for updates in the morning before I do anything else lol! Here's to a successful extubation!
    Kara, NY

  6. Hooray!
    I read all those articles in awe of the doctors and families
    Who are paving the road for others. Proud of all of you for staying strong! Again, thanks for sharing your journey with us.

  7. Whoa! Great news to come home to!
    I am so happy for you!

  8. Great to hear Bella continues to improve. Here's hoping and praying for good results with coming off the ventilator.
    Thanks for the birthday greetings and lovely affirmations. Prowd to be your Mom. Love to all,

  9. Fantastic news about how well she is doing, so happy for your family!

    I love what you said about the end of your post. Recently I have been trying to "live" more... it's so easy to just get stuck in the routine. My favorite is a good tickle fight with my kids.