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!😍🤩

12/14/23 Meckel’s scan

 On our way to get a scan to see if we can find the source of her GI bleed! 

Praying for a safe scan that doesn’t require sedation

December 11, 2023

 Annelise turned 4 1/2 yesterday!

This week will be busy with therapies, specialist follow-ups, and a scan for Meckel’s diverticulum…. A possible culprit for the bleeding in Annelise’s intestines… 

We are hoping she will sleep through the scan, that way we can avoid her having to be sedated.  If the scan is positive… she will likely need surgery to fix a portion of her intestines, if it is negative… then we still don’t know where exactly the bleed is coming from, and have no plan to fix it then… so, we’ll just go where God leads us on this one❤️

Happy Thanksgiving!

 Much to be thankful for! 

The Lord’s gift of salvation, and our community of family and friends💖. The absolute biggest blessing these past 4ish years has been to watch this sweet kid grow from a teeny tiny 3lb baby to this 28lb sassy pants😍.  Years later and words still fail to adequately capture the level of gratitude we have for her Nebraska roots❤️🤩🥰🌽

11/20/23

 Happy to be home!   What a morning. Would obviously much prefer to not have to bring Annelise in to get poked. Each transfusion is a gift of health but also carries risks with each one.  We couldn’t be more thankful for our tough little cookie and for the relatively easy time she had this morning. Thanks to the blood donor, our wonderful nurse, who we realized has been Annelise’s nurse before about 3 years ago at the Synagis clinic when we got 4 weekly shots to protect her from RSV as a little baby☺️, and the skilled nurse who placed her IV.  I thank the Lord for friendly faces to help pass the time waiting for the transfusion to be done, and that Annelise seems to be tolerating it well!

Pink lips and a smiley face makes the day end a million times better than it started.  This is why we do the hard things.  She is always worth it🥰😍

11/14/23 It has been awhile!

 Life has been busy lately and I stopped writing updates, but I’m back at it!

Have you seen Annelise’s amazing Wonderfold wagon, or her long awaited medical stroller?  Two very useful tools for travel with our most precious girl and her many accessories!

Ya know when they aren’t very useful though? When we leave both at home! Whoops!🤪

We had a hematologist appointment today and didn’t even realize we didn’t have the stroller until we got there. We especially didn’t want to reschedule today since there have been some symptoms of low hemoglobin again… nothing extreme, but enough to make us wonder and really want to get the results of a CBC.

The good part…. Annelise LOVED being carried all over the place and was grinning from ear to ear and even laughing as we walked.  I’ve been looking for ways to incorporate more opportunities for exercise in our regular day, and I think I found a winner! This kid weighed in at 28 lbs today, and by the end of the appointment she felt much heavier than that 🤣

The not good part… Annelise still seems to be losing blood.  Her hematologist made a referral to get another blood transfusion and also a scan for Meckel’s Diverticulum.

She will likely need to be under sedation for the Meckel’s procedure as the scans can take about 90 minutes.  She has done well with anesthesia in the past, but just like the rest of the population… we try to avoid it whenever possible!

Even though finding Meckel’s would likely mean surgery… it is really the only hope we have for a way to take action against this mystery bleeding in Annelise’s GI system… otherwise we just keep giving her blood transfusions and alleviating the symptoms without knowing the problem.

This blood loss situation has been pretty stressful this past year.  I’d love for a real solution to be found. At the very same time I dread surgery.  Same feelings we’ve felt before.  Going through with all her previous surgeries has given us days like this one today, where we find new activities that bring Annelise real joy, and in turn, melt our parental hearts at the sight of her sweet smile🥰🥰🥰. God is so gracious and we know He is in the details now as He has been in the past and always will be. I don’t know how it will work out, but I know and trust the one who does🙏🥰