Tuesday, July 28, 2009

Bella's Latest Milestones

Hi all!

Seems like I'm not getting around to this site as much recently. I think there are two reasons for that.

1) New developments on Bella's condition aren't emerging with the same speed as early on. We are in a routine of care that involves dressing changes every other day. We almost made it through yesterday's dressing without having to break out the needle (to pop a new blister), but alas, we found a big one on her left knee when we undressed the final appendage of the session. So, pretty much every dressing change follows the same sequence: right hand, right elbow, right leg - switch Bella around on table - left hand, left elbow, left leg. Each time, there usually is at least one new or recurrent blister, and the other existing blisters take 1-4 weeks each to heal, depending on severity. It still takes 30 minutes of prep and 1 hour of treatment. It's not getting any faster, but it's getting easier. The fingers are really Bella's biggest problem area. They just can't seem to withstand any impact with any objects without BALLOONING. We have to wrap 1-3 fingers on each hand almost all the time due to some recurrent blister blowing back up. That's a drag. The good news is that Bella's left foot will be totally closed again by tomorrow when we redress it. It has been healing fabulously. Take the good with the bad seems to be the name of the game.

(BTW - the Care Pages photo gallery is having issues right now or I'd post new pics)

2) I am working and just don't have much free time to update...(smoke screen to cover that....)

...really, I was fearing that you all would eventually wear out from the constant writings and would just go away. So, I beat you to the punch by pulling away first. Call it a trigger-finger defense mechanism...if I leave first, you can't hurt me! Yep...I admit freely that I made it all about me and not Bella. No biggie. Just me being a human.

Just typing this offers me the gift of reflection; I hadn't seen that this is what I was doing till I started typing this! Ah...insights. They never get old.

In other news, Bella's 2 month check up was yesterday. Can't believe it's only been 2 months. Feels A LOT LONGER THAN THAT. 10 pounds 6 ounces & 22 inches. 40th percentile in height and weight, 70th percentile in head circumference. Doc thinks she looks and sounds good. Music to our ears.

Tonight, Bella is sleeping with Ali in their room for the first time! Ali is SO excited! Ali started sleeping through the night the night after her 2 month check up so....[fingers crossed]

We took the family to Disneyland on Friday night! We went for a meal and a 2 rides for Ali in Fantasyland. It was a success! Ang bought an AWESOME new double stroller (1 up front & 1 behind) and we took turns going on rides with Ali while the other chilled out with Bella. Bella loved the lights! It felt great to do something 'normal' as a family. That is going to be key in all this I can see.

Ali started Horseback riding lessons on Saturday. She left crying because they didn't give us an itinerary for the 4 week program till we arrived on week one, and in session one, the kids learn to clean and bridle the horse, so Ali was really sad since she thought she was going there to RIDE a horse. Now that we have the itinerary, we can prep her accordingly. Good job, City of Orange. Maybe send out the itinerary in advance? I'll pay an extra buck to avoid having my kid crying after day one.

Gift certificates and food continue to flow into our home from near and far. We are so blessed by the abundance of love and support we ongoingly receive. Thank you all for all of it. It is overwhelming, and it is a great feeling.

Last but not least, BIG THANKS to grandma (Ang's mom - my mom goes by Nanny) for agreeing to:

1) come and clean our house once a week and
2) watch the kids for the whole weekend in Nov. so we can get away to Disneyland for our anniversary and be kids ourselves!

Ang's mom came and cleaned today while I was at work, and when I walked in the door...it was magical. It felt so...clean and orderly...I could feel it as soon as I walked in, even before I realized what had happened. Then, I went into the bathroom and as I was washing my hands, I could see my reflection in the faucet...that really gave it away 'cuz I NEVER clean the faucet that well! Having a clean house makes me feel so much more at peace, it's amazing. Thanks again grandma for providing that peace! We love you!

Okay, good night. When the Care Pages photo gallery is working again, I'll post new pics and send a quick update. Thank you all again for taking the time to read this, send prayers, cards, gift certificates, positive thoughts, energy, vibes, wishes, et cetera. It all matters, and it all contributes to all of us and we are eternally grateful.

God bless you all.

1 comment:

  1. Comments from Care Pages:

    Posted 1 minute ago
    by Albert Alva

    Your heartfelt insightful post is much appreciated. We're all still here for you.
    Posted 12 hours ago
    by Russ Baldwin

    Parents are great. Cleaning, buying food, watching kids. Someday you will get your chance to, and when you do Tim, please be sure to polish the faucet. We will continue to pray and keep the vision. Stay strong.
    Love & Prayers
    Russ & Jen
    Posted 1 day ago
    by Marie Bresnahan

    I had been away from my email for a week or so and am so happy to get back to these updates.
    I include you all in my prayers every day so please know tha tyou are being thought of by folks all over the place!! Frmo Redding, CT to Brooklyn, NY.......
    Peace and love,
    Mimi B.
    Posted 1 day ago
    by Sara Cooper

    we will never wear from the updates. even if there is no news...you know, no news is good news, right?
    Disneyland and horseback riding? How exciting!
    (and what a bummer about the city of Orange letting Ali down...they obviously don't have their own kids...I will say, however, we had a wonderful experience at Jedi Training Camp, also through the city..)
    I will check back for new pictures...that's my favorite part!
    Posted 1 day ago
    by Jennifer Higgins

    Love those grandmas/nannys!
    Posted 2 days ago
    by terri wiener

    Tim, Tim, Tim....
    It makes my day to read of the triumphs, big and small, of your family. What a treat to do family things. I'm very happy for you all.
    Warmly, Terri