7/29/20 New casts

Got new casts today!  Quite the mess to clean up still from soaking the casts off for the first time!  Next time should be lots easier.  Her doctor was pleased with this first round... whoohoo 1/6 of the way done!

7/26/20 1st Trachiversary

Happy 45th wedding anniversary to my amazing parents!❤❤

Happy 10th wedding anniversary to my amazing friends Laurel and Andy!❤❤

Happy 1st Trachiversary to our amazing Annelise! ❤❤

We are going through a sleep deprivation season here at the Buchanan home... so I don't know if I can put the words together to describe our past year with the trach... or what it means to us to have this lifesaving accessory for Annelise.  

This part of our medical journey has probably been the most stretching out of my comfort zone, challenging, and even a catalyst for my spiritual growth!  As I could not wrap my mind around how the God who made me and knows me better than I know myself.... would give me something beyond my ability to cope with!... God knew that with His help, turns out I was actually made to do this!  

Kevin jumped right in to caring for Annelise's trach much sooner than my fear would let me.

Also shout out to God for giving us amazingly gifted teachers to help us learn! 

There should be some sort of extra special award🏆that goes to the RT's that teach parents how to care for their child's new trach.  The patience and pretty much clinical counseling skills that go into the experience make them rock stars in my book!😎🥰🌟

7/25/2020

Photo update :)

YouTube of Annelise "talking"

7/22/20 - Serial Casting Day 1

Serial casting for clubbed feet, day 1.
We plan to get new casts each Wednesday afternoon. The office we go to doesn't saw off the casts, so we will soak them off before we go... or they can help us if we go in early for our appointment.  She doesn't seem to mind too much.  I am glad we are getting it done now, since the only part that seems to annoy her is in her bed when she can't roll from side to back.  Praying that by doing this work now, she will be able to enjoy more movement and independence later!

7/19/20 She's a gift!

So excited to tell you all that my brother Eric and his family are all feeling well and recovering from Covid 19! Thank you so much for keeping them in your prayers! Thanks to God for their health! 

We have a couple appointments coming up this week for Annelise.  We decided to go forward and start the serial casting to hopefully correct her clubbed feet.  She will have casts on her ankles full time for 6 weeks.  Sad to do it, but will be happy to have it done!

Few kids with Trisomy 18 can walk unassisted.  Annelise also has Spina Bifida, so that makes it even less likely that she will be able to walk. I've used this as reason to consider not casting her feet at all... but that would mean that she for sure would never bear weight on her legs. Even if we only ever get to the level of working to put her body weight on her legs.... we will have fun while doing it, and that will make it a great experience.  She is already amazing.  Every day is a gift ❤

7/9/20

She is so fun.  I love this girl so much!

P.S. Melanie's symptoms remain the same, not worse❤ nephews are good, thank you Jesus, amen!

Annelise making noises

She loves her rain stick toy

Making bubbles

7/8/20 eye patch and brother update

Quick update for you amazing people who are praying for my brother Eric and his family.  He actually used the word "well" to describe how he feels today!  Praise God!  The boys are unaffected still, but Melanie has some mild symptoms... plus she has 4 boys 4 and under to stay home with while dealing with Covid 19!  Praying for perseverance and health for them all, and so grateful for the mild symptoms.

We started patching Annelise's eyes.  Alternating eyes for 1 hour per day.  If her eye muscles get stronger, she might avoid a corrective surgery.  For now, she's the cutest baby girl pirate I ever did see!

4th of July 2020

It's challenging to give space in my heart and brain to different kinds of emotions at the same time.  You all know that, duh, we are probably all participating in this dance more than we were before due to all that's going on right now.

I can remember last 4th of July.  It followed an awful night in the NICU for Annelise where no body got any rest.  We were in that period of time after she got extubated, where we just had to "wait and see" how she tolerated breathing on her own.  Turns out, intolerable.  We are so glad that somebody invented the trach! Fast forward to this year, and she's just got smiles for days, her 4th of July bow from Etsy seems to have shrunk since last year 😊, and she's shockingly healthy, all glory to God.  We are loving this season and praising Jesus for these blessings!

Last year I wrote a post making a point to intentionally praise the Lord when things weren't going so great.  Like the song "I'll praise you in this storm".

I'm so glad I wrote that down so that I could read it today, when we found out that my brother Eric has tested positive for Covid 19, and has had it for almost a week now.  His family of a beautiful wife and 4 of my amazing small nephews have been exposed, but are so far showing no symptoms.  A band mate of Eric's had gone to a family funeral, where a cousin unknowingly brought Covid and spread it there. The band mate didn't know yet when they practiced together, and that's how my brother got it.  Thank the Lord that his lungs haven't been hit hard, even with his asthma.  

So there's a lot going on!  I can't ignore how amazing it is to see God carry us from our NICU days to now... and I also can't ignore that we in no way need Him any less now than we did then.  Like that song says, "It's your breath, in our lungs, so we pour out our praise".

Prayer requests:

Please pray with us for my brother, Eric, to have full health restored, and his wife Melanie, if she has Covid too, we are asking the Lord for her to be an asymptomatic carrier, and their 4 small boys to be free from symptoms as well. Praying this time of waiting and quarantine passes quickly for them.  Waiting is hard.

 It came to my mind that way back when Eric was little, and he and my sister would let me paint their faces like puppies and pose them for pictures (on film that we had to take to Walgreens to get developed!) God knew then that this Covid experience would be part of Eric's story. We trust Him, Lord over Eric's whole life.  Thank you for holding him and his family in prayer!

Annelise's 1st fireworks

July 1, 2020

Things went a little differently at bedtime today because miss Annelise can now roll from her side to her back, so she doesn't stay in the nice position I put her in anymore 😁  That's okay with me!  She eventually rolled back on the her side and is sleeping😴 for now anyway! Tomorrow morning we wake up early to go get her eyes checked out.  Praising God for blessing Annelise with more milestones, and praying for health and safety while we are out and about tomorrow. Here is some more playtime documentation of our little masterpiece!😁