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!

5/29/22

 Update on Annelise, the almost birthday girl!

We decided to take her to the ER last night, but we're now home watching her closely.❤🙏

We first noticed a high heart rate of up and down from 130's to 150's (her resting baseline is 100-110's) when we hooked her up to her pulse oximeter for her nap.  I was really surprised since she had been acting like her normal self. I didn't have any idea that something was going on.

She didn't have a fever then, but the next day on Saturday, her temp slowly crept up and her heartrate was still staying high, so we called the on-call urologist, thinking that it is likely a UTI. The resident we spoke with recommended a trip to the ER just to get more eyes on her and more tests available.  We like to catch things early if possible, and definitely don't want to miss anything important if we can help it, so we thought that was a good plan.

We had to wait for an ER bed, they were very busy, but so thankful they had us wait in an inner hallway instead of the regular ER waiting room.  

The did a urinalysis and viral panel.  Both of those came back negative.  There's a chance she could still have a UTI, the lab will continue to test for a couple more days.  That's what happened with the UTI she had at 6 months old.  Initially it said no problem, then we went to the ER that weekend and she was positive then.

Since we don't have a real direction to point any antibiotics at.... we agreed with the ER doctor's plan to send her home, and watch her here.  If her symptoms get worse, we can always go back, and worse symptoms would hopefully also give us more help to determine where the problem is in her body.  Already today, she has been sleeping a lot, but is more playful and smiley than she was yesterday. Heartrate is still elevated, but not nearly as high as yesterday.  She actually started to perk up while in the ER.  She started reaching for toys again, and smiling again. That was just after one dose of tylenol.

We are grateful for the improvement and praying she'll kick whatever it is without more intervention needed.❤🙏

Thankful for easy access to medical care.  Grateful for healthcare providers that treat Annelise so well and show up to do these intense ER jobs!  Blessed to have family praying for us while I was too busy being the only parent allowed in the ER to update fb at the time.  Kevin waited in the parking lot even though he couldn't come in.  He is the best! Wanted to give you all the run down of our day!  I'm hoping she will be back to her 100% long before her birthday party.  We'll do whatever she needs to get better. If we end up back in the ER, that will be ok too.  God knows all of our days, and like He has every time before, He'll provide what we need everyday.

I hope you all are staying well!

5/10/2022

 Today brings Annelise's last month of being 2! It was also a great day because she got a super upgraded chair delivered! It was time, since she can nearly rock herself right out of the old reclining high chair that she has used up until now. She loves it! She's 34 inches long now, and nearly 23 lbs. The Lord has blessed us big time with this babe!

May 1, 2022

 Here are some photos of our antics lately.  The video shows Annelise playing with a switch operated drum that Kevin made for her💖 The drum was a cool idea, it lights up and Annelise enjoys it, but it wasn't easy to make it turn on. Annelise wasn't strong enough to play with it how it was, so Kevin connected a switch to it, and now when she pushes the button, she sees the lights!  

We went in to get her hearing aid size adjusted as she is getting bigger, and while we were there, they faxed the records from her hearing test to UCLA so that we can schedule our first consult with a doctor to discuss getting a cochlear implant for Annelise to hear with, since this hearing aid doesnt seem to be giving her the ability to hear voices. 

Exciting and a little scary! I'm praying that we honor God and His plan for our family with the decisions we make for the care of this amazing kid! 

How has so much time passed since she was born, that this is the last month of her being TWO?!🤯🥰🥳