3/31/2020 Happy Halloween!

 Here's a little collection of Annelise photos of the week. 🥰

We finally went to see the plastic surgeon about her cleft lip and palate repair plan.

It's so exciting to be talking about the thing that was put off for so long in order to focus on the high priority health issues first.  The surgeon remembered us from our initial visit in the PICU when we came home from Nebraska, and was pleased to see Annelise doing so well!

We came out of the visit with a plan to repair at least her lip....someday.  Heading into flu season whilst this pandemic is going on, is not the best time for an elective surgery!

After we get set up with a Speech-Language Pathologist,  we can talk and have them assess more to determine if or when closing the palate will be helpful.

That gives me plenty of time to research/ get even more opinions from friends who have children who have gone through the surgeries... and most importantly, enjoy her sweet and unique clefty smile!

I am in awe of her disposition really.  She loves to smile so much!  She makes our days overflow with gratitude that she's here at home with us!🥰🥰🥰 The thing that takes away her joy throughout the day is the trouble with 💩💩💩.  With her low muscle tone.... if it's not one thing, it seems to be another issue. There are a lot of crazy expressions that we get on camera because of gas bubbles😆 

Her smiles are my favorite!

Here's the linknto a cute giggling video :)

10/24/2020

 We had quite the day today.  A couple photo shoots, bath, and playtime for Annelise had her wiped out and ready for a long nap!

This video cracks me up because there i am, happily posing for our picture to be taken, totally unaware that my sleepy girl was trying so hard to participate in exercises when she was just so tired she couldn't keep her eyes open! 🤣

She didn't have a very long nap... in the afternoon... so the nap took her during playtime with toys on her tray 🥰

So grateful for these moments with her!

10/22/2020

 We got her new trick on camera!😁

10/20/2020 - Bummer ABR results

 We didn't get the results that we were hoping for today.  Annelise's sedated ABR hearing test didn't show much response, the hearing loss is so significant, especially in her left ear, that the ENT was wondering if hearing aids will even help at all.  She is having one of their people from the front desk work with our insurance to see if we can use their audiologist, or if we need to go somewhere else.

If hearing aids don't work, a cochlear implant could be a next step to try.  As of now though, we know she definitely can't hear us, and there is a real possibility that we won't be able to help her hear.

I'm mourning the ways that I know how to work with little kids, that I will never be able to use if Annelise can't hear me.  It is a real loss.  But, my incredible husband reminded me that I can learn new ways to teach her things.

I'm grateful that Kevin is still working from home, and could be here to process our responses to the official news that Annelise can't hear. I'm sure just like everything else, it will be harder on some days and seem like no biggie on other days.

I love that Annelise doesn't seem to be bothered by not hearing.  She has been extra smiley this past week. We are sad because we know what she is missing out on as far as joy from music and communication, but Annelise doesn't know she is missing anything. 

Despite the morning bummer, we had a great afternoon session of physical therapy via Zoom.  We tried some new exercises, and helped her roll from her side to her tummy.  She wasn't the greatest fan, but she's really tolerant of our crazy ideas, and I think she enjoys moving in new ways too.  The PT suggested a change in where Annelise's arms were positioned, and it resulted in Annelise popping her head up higher than I have ever seen her do before!  She is still wobbly,  but it's so fun to see her getting stronger!

I will still be praying that she grows into some hearing abilities!  I'll keep you posted about it after we meet with the audiologist!  It encourages me that multiple friends reminded me on yesterday's good news post that God is good all the time.  He's good today and right there with us as we figure out the best ways to connect with Annelise without sound, while waiting to find out if she might be able to hear us in the future.  Doesn't this post sound like I'm being patient?  Inside I want to know what's going to happen noooooow!  Luckily, we have lots of PT exercises to keep us busy while we wait❤

10/19/2020 71 weeks old!

 The update on Annelise's routine liver ultrasound is that they still see no sign of any hepatoblastoma, it looks like a normal liver!  Thank you God!

Tomorrow we will have a telehealth appointment to go over the results of her hearing test. 

It's Monday, which makes her another week older! 71 weeks old! 🥰🥳❤

10/16/2020

 Here are some photos from this past week.

Highlights:

We seem to be on an earlier than 2am bedtime trend! Whoohoo!

Digestion is sometimes great and we love that!😁 But sometimes not great at all, which makes us all sad.😔

We got a routine liver ultrasound done since she is at risk for a certain liver cancer.  No results yet

No results from her hearing test yet... but that's probably because Annelise's mom totally forgot to schedule the follow-up appointment😬 whoops

We celebrated the 2nd birthday of our first and only foster baby Ethan! (His family gave him a different name when he went to live with them, but I still think of him as baby Ethan) We haven't heard anything about how he is doing since he left, but we still pray for him and his family, celebrate his life, the piece of it that we got to share with him, and the probably more-meaningful-than-we-will-ever-know way that God used him as the first baby in our home to drive us to trust in God's plan for the little people we care for, rather than our own. A lesson I have learned, and am also still learning daily.   

Annelise and baby Ethan were both under our roof at the same time, she just wasn't born yet.❤

10/10/2020 - 16 months!

 16-months-old today!  ❤

Praise the Lord for this little girl.  Sleep deprived and always busy, we are having the best time watching her grow and learn!  The snowboarders have a phrase they use, "shred the gnar".  Thought it was very appropriate for our little Halloween snowboarder, since I don't snowboard, a Google search told me: "To shred the gnar is to excel when confronted with a challenge".  That's our baby girl!  Thanks be to God for the strength He has blessed Annelise with.🥰

Check out the video!😎  It starts off with her batting her hand at the hanging magnets (I just thought of hanging them like this last night!).  One of our goals is for her to grasp toys and hold them, instead of just swatting at them.  I showed her and helped her to grab onto the magnets yesterday to pull them apart, and she impressed the socks off of me this morning by doing it herself!  She has been getting better at it all day and actually seems into it, which is the best part! 😁

We hope you are having a great weekend❤

Annelise Video