12/9/22

 Annelise is holding day 7 of her advent blocks in this photo.  She hasn't been feeling her very best today. Shortly after taking the picture, she puked for the 3rd time. It has been a long day! We're going to swap out her last meal for some Pedialyte instead, and hopefully tomorrow will be better for her tummy.

The morning started great at her orthopedic surgeon's office for a routine check-in.  We're to keep doing what we are doing, and we'll get x-rays to have a look at her scoliosis progression at the next visit in 3months.

We got to see some awesome nurses and child life specialists who dote on and adore Annelise. The music therapist that I first met while pregnant with Annelise was also there. I don't see all of these folks often, but it isn't easy to forget the sweet music therapist who took a recording of Annelise's heart beat in utero, and made a cd for us with it, as well as a song that is meaningful to us(https://youtu.be/50ygAc2qP5A).. And put the heartbeat in a stuffed bear that we took with us to Omaha and now sits on the shelf in Annelise's room.  All of these things were done just in case we never got to meet her.  So it is extra special to see her and show her how Annelise is growing!  We're so lucky for today🥰🙌

December 9th:

The last couple of days have been too exciting. We aren't strangers to pukes at this house, but some extra unusual symptoms that don't usually show up have us wondering if there is a new form of seizure happening... If Annelise's shunt really now is not working and her brain has too much pressure... Or maybe, and this is my preferred option... maybe Annelise's GI motility went on vacation and it is instigating all of these other issues. Time will tell, but when one possible option is that her shunt isn't working, that takes top priority. If the ER wasn't crowded with all the various respiratory viruses, we would probably just have taken her in to confirm that it isn't the shunt. Our stuff is packed by the front door just in case, but happily, after I put her in her festive outfit this evening and we read our advent story for today, she perked up and had some symptom free awake time. The sleepiness of the day was concerning, so it was sooooo nice to see her eyes open and happy for a bit! I'm sure after reading about king Saul, and being reminded that God is with us to fight our battles with us, helped me be calmer for her too.  

Yesterday's advent blocks photo shoot got puked on.😬 It happens. So I took a photo of the cleaned up babe during the little bit of time she slept instead 😊 Looking forward to more health for Annelise tomorrow, her half-birthday!🎉♥️

12/3-5/22

 Day 4 of getting ready to celebrate Jesus' birth on Christmas😊

Kevin read the devotional today, and I was trying to save these photos for Christmas cards, but they are just too cute I had to share now!😊

We read today about how when life is hard, God is still there. God is still there and he is still good. 

These words are so true today as we get ready to celebrate Annelise's 4th Christmas with us! They were true her 1st Christmas too, which we spent in the hospital with her for a month. These words of God's presence and goodness have also been real the Christmas season where I received a voicemail from the OB's office, asking us to call back to make an appointment to come in.... and then a call from a nurse asking us to come in sooner than the appointment I had made when I returned their call the first time.

They had my blood test results, and needed to tell us about our baby girl who probably had trisomy 18.

That was hard.  Learning that there would be hurdles to getting Annelise the medical care that she would need to have a chance at surviving was hard. Watching her get poked and go through the life-giving but also painful interventions we chose for her was hard.  Life is still harder than it used to be. But there's also the cutest light in our lives that we never had the pure joy and honor to live with before she was born!  God has truly been with us just like He says he will.  I had the head knowledge from sermons and studies like the one we read today.  But these past 4 years have provided a million of learning opportunities to see how He never leaves us. He'll make a way for us and walk us through. I sure am tired during this walk, but God's still here to borrow my strength from.... And look at the  view as we go!  So cute I can't even wait to share it on the Christmas card🥰🥰🥰 Occasions like this invite all the memories and reflection.  I'm so grateful for my God, my family, and the friends he has blessed us with!

12/2/22

 Advent season day two.

I don't know how much, if anything, she can hear of us reading these devotions, but her sweet smile tells me she knows she's loved!

12/1/22

 Happy December 1st!

We had a long day at a shunt study for Annelise.  This was a new procedure for us, so it's always a little unnerving to not know what exactly to expect.  We had a 2 part appointment, and were there from 9:45am    until after 3pm. It was supposed to be much quicker.... But our neurosurgeon got called to an emergency surgery, so we had to wait to get started.  A different neurosurgeon came to tap Annelise's shunt.  New doctors can be unnerving too because... "Who are you?".... But the new-to-us neurosurgeon ended up being lovely, explained things before she did them, and we were grateful to finally get started on the imaging.  Also grateful that we weren't the ones dealing with an emergency surgery this time! I hope that kid is doing great now.

All seems to be well with Annelise's shunt!  Meaning no blockages we're observed, seems like it is working!  We will know more officially when we hear from the doctor, probably not until next week.

We were so happy to be home finally at the end of the day!  We celebrated with Door Dashed dinner, and day 1 of our new advent blocks.  Each day of December until Christmas, we'll read a different story from the Bible that leads up to Christmas, and the celebration of Jesus' birth. The blocks have pictures on them to represent what 

 Bible passage was about for that day, and they also have a letter to spell out a message when we get tobthe end.  Annelise looked so cute checking out the pictures in her story Bible.🥰