Thursday, September 17, 2009

Well, sorry it's been a while since posting! I've been at a loss for how to keep you all updated without you having to come to the blog to check, and I've been a little laid up since my accident. NO worries, though. Just wanted to reach out and touch base again. You see, today, I finished "Bella's Blessings: a Humble Story of Providence." Today's task was to finish importing all of YOUR comments. I was really inspired all over again by your generous love. After all, there were over 500 COMMENTS on that page in just 3 months. You guys are AWESOME!

Now, what news to bring to you...

Well, Ang went back to work yesterday. She is happy to get back into a routine again. She was couped up in the condo all summer during the hottest months in SoCal, and since heat and humidity exacerbate Bella's condition, it was tough to get out. I'm back in the home for a month taking care of Bella. No worries, I had a blast with Ali for a month when Ang went back to work the first time, so I'm into it.

Bella's feeding issue is as follows. She will NOT take a bottle awake. We have to give her a pacifier and let her fall "almost" asleep...then slip the pacifier out and slip the bottle in without waking her. However, make sure that bottom lip doesn't get sucked in...when Bella pulls that bottom lip in when she's sleeping, you can forget getting a bottle in there! We are fortifying her bottles with extra formula; still using chlorophyl and Alkaline water (pH 9.5), and still using the culturelle and Zantac 2x a day. Despite her bottle aversion, Bella seems to still be growing every week, so we're blessed.

Regarding Minnesota, we are GO for consult in October, but STOP for anything else. Our insurance doesn't cover clinical trials. We are appealing, but it may be a mute point because Ang's company most likely is changing providers during open enrollment in October. U of M said that the new insurance provider usually works well with them, so keep your fingers crossed that the new plan covers clinical trials!

The best part about reading old posts was that I came across my vision for Bella. "One day, Bella will look back and say, "yeah, when I was born I had this rare skin condition, but when they brought me home from the hospital, it went away."

It dawned on me, that when we go through this trial, and Ali's cells start to completely heal Bella, we'll come home from U of M Hospital, and her condition will go away. When I made that bold statement, I never thought past CHOC, but GOD thinks a lot further ahead! Furthermore, she really will be young enough to where she'll have to read her own book to learn about this whole journey. Our hope and dream and vision and PRAYER is that one day, Bella will just have to take our word for it that life was anything other than typical.

Good to talk to you again. Please comment and tell us you're still here!

We love you, God bless you all.


  1. Tim and family, thanks for the update! Email notification is just as good as anything else. Many prayers, healing meditations, and love for you all and Bella, kat

  2. STILL HERE Tim. You HAVE to know, you are THE MOST participative father I've ever known in my 53 years of living, and I've seen some good ones. When Bella is all grown up and you all get to look back on these days guess get what you get to say and do-rest, smile and know you were very present in your little girls life. Most dads don't get this opporunity they have to work and pay the bills. And YAAAY FOR ANGELIQUE gettting back to work I bet that's a mixed bag of emotions for her as well but YAAY!!!. I'll keep all my digits crossed and your names in my prayer book for insurance coverage on clinical trials. Keep'em coming[-the posts]

  3. I am holding and believing your vision "One day, Bella will look back and say, "yeah, when I was born I had this rare skin condition, but when they brought me home from the hospital, it went away."

  4. Hi there! I've been reading your blog for a few weeks now, but never commented because you had comments set for sign in only. I checked today and you've allowed regular comments, thankyou! Best wishes for sweet Anabella and hope her transplant is successful.

  5. I'm still here Tim. A few days behind...but what's new :) Love you guys. Jen T.

  6. The McGuires are still here. We just received Bella's baby announcement last week and I am amazed at you, Angelique. How do you find the time to create something so darling, much less get it addressed and mailed to everyone you know? We were glad to have it and love the beautiful photo of Bella.
    Ang, I can imagine how hard it is to go back to work with a child with special needs at home. It is amazing how things 'work out' to the end that Tim is able to be at home with baby Bella. We were wondering what you guys were going to do...
    Good news about MN! Did you get the blood test results to see that Ali is a match? I feel like we missed a post in there somewhere. Congratulations on the ebook! Our love, thoughts, and prayers are still with you. Marissa still asks to see pictures of "Baby Bella," and we haven't forgotten they need to meet. Let's see what the trials hold for you and we'll keep in touch.