Personal Progress

May 13, 2013

Filed in: Life, Reagan, Thoughts

Reagan is coming up on 12 weeks and I feel like Rob and I have come SO far since she’s arrived.  We’ve grooved in to a pretty great routine with bottle making, feedings and making sure our dog Bauer still gets tons of love.  Reagan is eating well (now at 30oz every single day).  Her levels are good…and her genetics Dr. even gave us permission to let her sleep for five hour intervals in between feedings…which is awesome and equals only one middle of the night feeding.  At our last Dr. apt., they were so happy with her progress and growth, that they were comfortable enough scheduling apts every three weeks, instead of every two.  Her last labs also showed that her protein could be increased again, too.

With apts every three weeks, we don’t have to deal with the blood draw every other week…one extra week in btw that is HUGE…if you’ve had to see your child get blood drawn regularly, you know what I mean.  Last time they drew blood from her head…I know that sounds terrible, but it’s by far the easiest and quickest way to do it.  After 20 minutes trying in the hand or arm, and the nurses needing a break b/c Reagan is sweating and crying so much, the head seems pretty awesome b/c it only takes 2 minutes.

the 20-minute method

the 20-minute method

the two-minute method

the two-minute method

On a lighter note… 🙂 I love all of a sudden realizing Reagan’s milestones like sleeping in her crib every night, holding her head up high, smiling and recognizing us.

Bauer and Reagan hanging in Reagan's room

Bauer and Reagan hanging in Reagan’s room


Reagan striking her version of glamour shots

She coos and loves it when Bauer licks her feet.   And every single day we become more attached and bonded to her.  Receiving her diagnosis seems like eons ago, as we grow into our new normal routine.

We’ve made a lot of personal progress and have our own milesones…getting out and about, eating at restaurants, walking Park Ave, going into stores, dealing with meltdowns without losing our patience and just being like every other parent.  I brought Reagan to work to visit and hung out with my girlfriends for breakfast (inside a restaurant).  No big deal for some people, major milestones for us.

Getting coffee with Rachel and Reagan and Everett meeting for the first time :)

Getting coffee with Rachel…Reagan and Everett meeting for the first time 🙂

Office Visit!!

Office Visit!!

Girls Breakfast

Girls Breakfast

For Mother’s Day, we celebrated the Saturday before and ate in Winter Park at a really nice brunch spot and then walked around the park, took photos and shopped.


DSC_4867  Mothers Day4

Mothers Day2

Every time we get out and walk around like a family, it puts her diagnosis further into the recesses of my mind.  I know she has it, I know we have to be careful, but as we continue doing life with Reagan, it feels normal and natural.


No one around us knows I’m watching them like a hawk, listening for a nasty cough or sneeze around the corner to shield her from…but don’t all parents want to shield their child from the world and what potential dangers are out there?

I am really looking forward to the future and other milestones we’ll hit as Reagan grows. Birthdays, parties, sleepovers, Disney trips, beach trips, holidays, play dates…they are all on the horizon. I pray that we meet each new challenge with wide eyes, smiles, laughter and peace…peace only God can give as we conquer new things, b/c we know ultimately, all we hope for Reagan, is in His hands.

comments +

  1. ashley blahnik

    May 13th, 2013 at 3:32 pm

    Hate to say it, but Reagan is starting to look less like a baby and more like a little girl!!! Can’t believe how alert she is! I’m so proud of her little self! Love you guys 🙂

  2. Bev Steinebronn

    May 13th, 2013 at 5:45 pm

    What a beautiful update!! Thanks for sharing, and yes, every parent watches out for anything that could be dangerous to their child. You are doing an amazing job adapting to a difficult situation. God has his hand of protection on her and is using you and Rob to guide her though life. What a blessing!!

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