9/1/24

 This little cutie went to Disneyland!  We had planned for the beginning of September, but turns out she does need to have her tethered spinal cord surgically detethered, so that will be happening on September 18th.  We wanted to have lots of time between Disney and surgery just in case we picked up a strangers germs while we were out on our adventure.  Praise the Lord, we all stayed well!🎉🙌

Our timing wasn’t the best, as Annelise doesn’t enjoy direct sunshine and being hot… so next time we’ll plan to go in the morning, and maybe come back in the evening, or take a long break mid-day somewhere perhaps.  We took her on Pirates, Small World, and a gem of a Disney cast member let us on Peter Pan even though they were getting ready to close down Fantasyland before fireworks.  She seemed to love Peter Pan and all the movement and lights🤩 

We love sharing Disney days with our girl! I can’t help but get a lump in my throat walking in the gates and remembering being there pregnant, wondering if we’d get the chance to see her grow and enjoy the park herself. Immensely grateful to God for this gift of this precious time.❤️🥰❤️

1/21/24

 We have some good news here!  It seems like  Annelise’s GI bleed has slowed or stopped. We finally made it two weeks without her needing another transfusion, and the symptoms of severe anemia haven’t returned.  We’ll check on her blood count next week.

It took some effort in the beginning of her life to find doctors who would outright say yes to providing the lifesaving interventions that she needed.  I know y’all have come on that journey with us in many different ways over the years.  I couldn’t be more grateful for her start in Omaha. 

And it makes me so happy to see the team she has now in Long Beach working hard to figure out the best way to treat this mystery GI bleed in our precious girl.  Annelise’s case was added to a multidisciplinary conference that is held every month where they discuss complex cases that could use some extra brain power.

They agreed on some strategies to try before laprascopic surgery is put on the table. If the bleed comes back surgery might be the next step, or God could have given us a “yes sure now” answer to our prayers for healing of her little guts.  Time will tell, God is good always, and I’m so happy for this reprieve with a happy Annelise too!😍🤩