6/29/22

 Yesterday Annelise was pretty miserable, but throughout today her rash has significantly faded. And she kept nearly all her food and water down today!  That's a big win, and it is soooo nice to see her more playful.  We put some aloe from a plant that my sister gave me on her from the fridge.  She wasn't sure what to think of that!😆 Sensory play and cool off the hives at the same time😁👍

Thank you so much for praying for us! 💖

6/27/22

 We're having a bit of a struggle today.  I'm hoping a good night's rest will bring calm to Annelise's body.  We've been on the hunt for the culprit behind the elevated heartrate that has stuck around, off and on since we went to the ER last month!  Bloodwork finally showed that our sweet kid is anemic, and her thyroid stimulating hormone is way high.... both things that have been well within normal limits for much of her life, so we have high hopes that Annelise can return to her baseline and all the smiles will return too!  She has been quite a bit more serious lately.  I wouldn't mind a bit if she had a serious personality.... but she's known to be a cheeseball, so her lack of smile makes me think things don't feel quite right for her❤

That's not even the big issue that overtook Monday though.  We started Annelise on an iron supplement 2 days ago, and last night she started to get a red rash around her neck.  This morning there have been big splotches that disappear and then show up on other parts of her body, all day long.  She seems to be having an allergic reaction to the iron supplement! She was having a hard time keeping down any food or water, puke galore, so we were about to pack up and head to the ER.... when we decided to wait a little bit and see what the next round of benedryl would do... praise God she was able to keep little amounts of pedialyte down, and it continued for the rest of the night, so she is well hydrated!  Thank you Jesus! Also wonderful news that she has been breathing just fine, but she has been so uncomfortable and in a benedryl fog all day.  I just want her to feel better!  

Our weekend was so fun at home together,  it's weird to think that was just the day before all this started!  We'll be looking to add more iron rich food to her diet and foods that help the body absorb iron too.  This is where having a gtube really makes life easier.  I fed her water slowly all day while she slept.  Meds went in without her tasting them, and it doesn't matter if the iron rich food tastes good at all, because it will just be blended up and put through her tube!  I'm extra thankful for the people who worked

hard to I vent benedryl and the gtube today💗

Happy 3rd birthday!

 While Annelise might not have known what to think about all the people who sent happy birthday texts, fb messages, sent thoughtful and generous gifts, or came to see her in person at her very first ever birthday party... my thoughts were overwhelmed with how meaningful it was to see such a celebration for our wonderful little girl!

We have incredible people as friends and family❤❤❤

We tried to put up enough shade, but her eyes were still sensitive to the sunshine, even with her sunglasses, so she spent a lot of her party with her eyes closed😎

Unicorns and bubbles were the theme, and some of our friends have giant bubble skills🏆😄.  It felt really good to see so many people.

I keep referring to it as a firehose of socialization, after a couple years of living life with our little family of 3😆! We are still recovering😊 Just now started to show Annelise her new super cool birthday presents! Kevin and I are sooooo glad we partied, and soooooo thankful for this life and the people we have to share it with🥰

6/5/22

 The weekend felt busy with house projects (happy to have a handy husband!🥰🤩), all that routine stuff that still needs to get done, party planning, and a special visit from out of town friends💖 Our friends have a nearly 9-year-old who graciously helped us try out our giant bubble wants for Annelise's party day😁   

If you didn't see the original announcement here on Facebook, this post is your invitation to come by our house on Saturday, June 11th. We'll have Annelise outside in the front yard from 10am-1pm, enjoying her visitors, birthday decorations and bubbles🥳

Her third birthday is the day before her party, on June 10th🎂.  

She seems to be recovering from her UTI well at home now, praise the Lord! ❤If anything changes, I'll be sure to update you here!  To help keep Annelise as healthy as possible, we'd love to see you if you and your house are feeling healthy.... and we'd love and appreciate a birthday message instead if you're feeling like you might be coming down with anything.

Threeeeee will be here this week!  We're getting excited!!😁😄😎😁

6/2/2022

 The Facebook memories evoke real life memories, and because of the things we've been through with Annelise these past almost threeeeeee years, and the way my own words remind me, we know how safe we can be in the arms of the father when the world does not seem safe at all. 

Seizures don't make me feel safe.  The Lord put people in our lives who also deal with seizures and live full and wonderful lives, so that really helps us to not feel defeated.  Having a responsive neurologist who returns my call the same day makes me feel that we will be on the right track with more info soon. It isn't uncommon for our friends with Trisomy 18 and 13 to need more help controlling seizures as they get older.  It's also very common for more seizures to pop up with illness.  These seizures don't look anything like the ones she originally had in the NICU.   We haven't seen one of those scary ones where her arms go stiff and she stops breathing since

Sept. 14, 2019, still in Omaha!  That's a great big win to be seizure free for so long! I'm grateful and trust that God will provide what we need for the next steps.  Im also bummed we have to start the seizure-free count all over. We're praying for them to go away completely as the antibiotics keep doing their thing.  I've been both overwhelmed with what else could be wrong that I just don't know about yet, and also overwhelmed at God's gracious gift of parenting this little girl who is just perfect.  I mean, I could list off the things that are wonky thanks to that extra chromosome.  There's a list in her medical record... but still look at her, God made her absolutely perfectly. 

She is more tired and sleepy during the day, but her attitude is amazing and smiles are the best!🥰🤩😁

May 31, 2022

 Well, we got word today that lab results confirm it is a UTI after all.

She has had two doses of antibiotics so far, so hopefully she'll be feeling better soon.  The big symptoms of elevated heartrate and fever had mostly disappeared! But since she has kidney reflux, where the bacteria from her bladder can easily flow back into her kidney.... not to mention she just has that one horseshoe kidney instead of two kidneys, we make the decision to blast it with antibiotics to protect the kidney health. 

Since her days in Omaha, she has been on a low dose of antibiotic daily for the purpose of hopefully preventing a UTI.  Since it isn't ideal to be on antibiotics long term, we were trialing a period off of the antibiotics.  Less than a month into the trial, she already has a UTI.  I still think it was a good thing to attempt,  bummed that it didn't work out.  Cutting out a med is a great feeling.  But it also feels great to have a useful med to go to when you have a UTI and want it to leave!

She has been sleeping extra, with moments of playfulness. Thank you so much for praying for  her and us!🥰🎉

Tomorrow makes 3 years since we got in the car to drive to Omaha!  Best decision we made for our girl hands down.  We had a huge long list of prayer requests for Annelise's young life.  Every one was answered. We got some yeses, some noes(that's how you spell it, I Googled!), and some not nows.  It was easy to celebrate the yes answers!  Those were our dreams come true! What an amazing experience to feel God with us just as much in the noes and the waits that were heavy and life changing, as He was with us when He delighted to give us our hopes and dreams.  We brought our baby home!  Biggest blessing ever!

I can't wait to celebrate her 3rd birthday!  Come over and hang out a bit with us when we'll have the birthday girl out front enjoying her unicorn party!