9/29/2020 Happy Coffee Day

 We are late for our fall photo shoot, but right on time for national coffee day!  Perfect since our nearly all-nighter called for double coffee today🤪  Annelise and I had themed attire today.  Me with a shirt that I had almost bought online so many times, but is even more awesome because my creative friend, Julie, crafted it herself, and now we match😎.

Annelise was wearing the same outfit today, at 15 months, that she wore at 5 months.  It is definitely the last time she will be able to fit in it, but was special to see how she has grown, and the outfit itself is special because it was the first item we got from the online shop of a fellow trisomy 18 mom.  Her shop has grown by leaps and bounds this past year ( Laree + Co.) as have our girls!🥰 

The other exciting news today, is that we had a phone appointment with Annelise's neurosurgeon,  who looked over her last MRI, and said she looks good, and so as long as that shunt keeps working,  we will just have a repeat MRI and see him annually.  You guys, annually, as in, only once a year!  Those stinkin' shunts can malfunction at any time.  Praying that this one will remain in great shape for years and years! And years!🌸

9/28/2020 - night owl baby

 Who needs sleep?  Not Annelise, apparently!🤣 She did sleep away the whole morning, actually.  It was a pukey start to the day that turned into her feeling crummy without many smiles at all until early evening.  Very much not her usual self.  I was worried she may be coming down with something, or having some unknown complication from her procedures last Friday.... so, perspective being what it is.... I can be excited to be up at 3am with a smiley girl, since it means she is feeling better already!🌸 Hallelujah!🥳

Checking out her muscles :)

9/25/2020 Sedated procedure

Annelise had her airway scoped and a hearing test done today!  We are home and resting now.

I asked God for my hopes and dreams of Annelise being able to hear better after her ears got cleaned and tubes got put in.  His answer seems to be "not now".  

🌷Our ENT came out to tell me that her ear canals are sooooo tiny that he couldn't even see if there was fluid that needed to be drained.  They don't make tubes that small, so no tubes for us.

🏵We were wondering how her left vocal cord was doing.  The one that wasn't moving at all when she was last scoped in Omaha.  He said it is still not doing much at all, but there is a little movement at the bottom.  The right vocal cord is doing great.

⚘She got to take the ABR hearing test!  I'm not sure how quickly those results will come back to us.

🌺There's not a lot of space around her trach, so they won't be upsizing at this time.

🏵They couldn't get an IV in, but word is that they did get some blood for the lab work. We are working on replacing her fluids now at home, poor hungry girl!

🌻She did have a tongue tie, so they fixed that, and I am looking forward to seeing how she likes sticking out her tongue!

While there is a real disappointment over her teeny tiny ear canals, and that her airway isn't growing in diameter quickly...  meaning no movement forward in either of those areas of her care at this time.... We won't look at this procedure as a wash.  We didn't get the answers we were hoping for... but we did get answers to our questions, and these answers will help us in the future.

She still has the opportunity to grow.  If her jaw grows enough, there could be enough room for her to breathe without a trach someday.  Or, there is a surgery to retract the jaw and make more room. Or, she could live her awesome life with a trach for all of her days.  

She also still has the opportunity to get tubes in her ears in the future as she grows, and her ear canals grow with her.  So God didn't definitely say "no".  But it is definitely a "not now".... that could turn into a "yes" or a "no" later.... more wait and see.... 

Today wasn't without many blessings.  Annelise was awwwwwed over wherever she went, we had great care, and God knew my heart needed friends in person since Kevin couldn't be physically there.

I heard my name called as I walked in to check in for surgery, and wouldn't you know, there was a friend from church there with her son too!  Social distancing rules and kids having procedures aside.... it was SO nice to see the eyeballs of someone I know and love!

Then, while waiting for Annelise to be done with her procedure, I got to visit with a friend and fellow Trisomy mom who was at the hospital at the same time!  She was there when I got the news that today is not the day for Annelise to hear better, or go up a trach size.  So helpful to have friends who understand this adventure because their adventure is so similar.  NEXT, my friend was walking up the stairs.... our very favorite RT was coming down the stairs to say hi, because she heard we were there today! After that visit, I spent some time on the phone with Kevin, and then got called back to see Annelise, where I was visited with by our Palliative Care NP, an amazing person who just makes loads lighter by talking with her.  It wasn't long after she left that we were discharged to go home.  I think I got more socializing done today than I have since the pandemic began!  So easy to see that God didn't give me what I asked for today medically speaking, but He put person after person right in front of my face as a visual reminder of how many different groups of people He has used to support Kevin and I, and Annelise.  What a gift!  I am confident that they, you, will be around to see what's next for her hearing abilities, and will celebrate the days she has here, regardless of whether or not she can hear a lot or a little ot nothing, just because she is ours. 😁

Again, whoops so sorry for not updating sooner!

9/23/2020 Last day fpr Casts!

 It was a big day today!  We took the last casts off of Annelise's club feet, and are now the proud owners of some bar and brace Ponseti shoes.  Annelise got her Covid test so that she can have the scheduled sedated procedure done with ENT this Friday, and she is asleep before 2am due to all the excitement of the day!

 Well, that's the positive spin on the day.  The details include a mad rushed feeling all day long, and Annelise's new shoes are a big pain in the butt.... but they are definitely better than casts... I'm just worried that I didnt put them on right.  The YouTube videos and the tutorial guy today all make it look super easy! But I feel like her foot keeps moving out of place when I do it.  I'm sure it will just take some getting used to.... but isn't anxiety hilarious?  At the same time that I know I have resources to help me as soon as tomorrow, and that her shoes do look pretty good.... my brain also is trying to convince me that time is ticking away on her little ankles in the shoes incorrectly.... and that they will soon advise me that we will need to start the casting process all over again! Ugh. Not hilarious!  I'm also worried about her sleeping on her back with heavy shoes on and not being able to roll. I don't know why I would choose now to stop giving her health and story of life and love to God.  It's easy to get caught up on the tasks that I do all day long and think that I have some sort of control over the number of breaths she breathes in her lifetime.  But nope, I can't make a heart beat or some lungs breathe no matter how hard I work.  My job is just to love the people who are sustained by the one who gave us all life in the first place.

Anyway, more good news is that she has gained weight and is now 14.5 lbs!  It looks like she might have grown a couple centimeters too since last month! 

The Child Life specialist who works in the orthopedics office made a graduation care package for Annelise to commemorate the last day of casting!  I love to see Annelise loved and cared for by the great team that she has here working to help her live her best life❤

Her Covid test was negative, and they took it by swabbing the back of her throat.  She did really well 👍

Here are some photos that I hope will make up for brimging you all on the anxiety and peace filled see-saw that I have going on in my brain.  Kevin got brownies baked for him today because he's stuck in the house with me😆🥰

9/17/2020. One year in CA!

 Today is not just any Thursday (it's Thursday, right?😆) We have been back in California for 1 year! It's the last Thursday with casts for Annelise! Also the last day of this round of antibiotics that adds 45 minutes to her breathing treatment, twice a day! 

We were in the air by this time last year.  What a big day, I can still remember the feeling of leaving Annelise's safe place to go into the unknooooown🎵❄😁

Difficult, but necessary steps, one at a time.

We're still taking those steps. Next Friday, Annelise will have a sedated procedure, that will clean her teeny tiny ear canals, put tubes in, if they can fit, have a hearing test, scope her airway to see if she can go up a size in her trach, which would mean other options for humidification would be on the table. 👍

We will also try to get blood drawn for labs, and a culture of what her trachea bacteria looks like now that we are on our last day of antibiotics looks like.  We try to add as much to sedated procedures as we can, to make it more  worth it, since sedation is never the first choice. 

It will be hard to hand my healthy baby over for a procedure to capable strangers, but we feel confident that this next step is difficult but necessary.  

I've done my best to recognize this baby belongs to God, before she belongs to me, and that her whole self is in His loving hands, so while I leave it up to God's plan for her hearing.... I'm still going to be bringing my request to His feet, and ask you to please do the same.... to let her hear.  That would be so awesome.  She already responds super great to visual stimuli... but no loud noises.  

I felt like she could hear in the NICU days... so in the back of my mind I wonder if cleaning out her little canals will be helpful just by itself.  Another "wait and see". And pray❤🥰

Cute video

9/14/2020- 5 teeth!

 I don't have a great pic yet, but Annelise is getting a 5th tooth!  On the bottom, she'll have three.  Not that I don't already have 458,204,199 photos of her... but I'm feeling the time crunch on freezing these 4-tooth, clefty smiles in photos.  She's growing up, thanks to the Lord for these days right here in the smoke, and in the fire, He never leaves us without His love that's bigger than I know how to comprehend. That's something I learned through experience from our time in Omaha.... one year ago today, Kevin left Omaha for his car trip back to California!

The 17th is the 1year anniversary of Annelise's first airplane flight!

I sure don't miss living in the hospital, but I still miss our NICU people!  🥰

9/8/2020 - Nephrologist joins the team

Annelise isn't tired - YouTube 

We visited the nephrologist today. Annelise's horseshoe kidney is working well, but we thought her team could use one more specialist🤪  I actually like having as many eyes on her health as possible as she grows, even if it means one more lab trip and one more specialist appointment.

Since it was the first visit, we had to go in person, but hopefully we can Zoom next time.. that sure is more convenient!

9/7/20 photos

 

Last day of casting 9/2/20

we tried to get a photo shoot for her Trisomy 18 sister, Ember...but Annelise turned it into a slumber party

Until it was actually time to sleep... then she was ready to party!

 The last day of casting for Annelise's formerly clubbed feet was today!  She has made amazing progress. These casts will stay on for 3 weeks, and then she will need to be in her "Ponseti shoes" all day, every day for 3 months.  That will be a little intense, since there is a metal bar that goes between the two shoes.  I see a snowboarding outfit in her future this Halloween.

She has started an antibiotic through her nebulizer to keep away the effects of the bacteria in her trachea that kept us inpatient for part 2 of the 3 part, month long hospital stay last December. (The term they use is "colonized bacteria".  It's there, but hasn't bothered her since December.... but rather than wait for it to get ugly.... which it usually takes the opportunity to do when she gets sick with something else....we have been prescribed a month on, then a month off, rotating schedule of these antibiotics) She has been extra "junky" and having a lot to cough since starting the med.  Part of me is glad for her to get practice coughing.  A strong cough will help her protect her airway. Another part of me is nervous to sleep, thinking she might need my help in the night.  She is 2 feet away from me, and has multiple monitors on all night. So we are praying for her continued health and safety, and will talk to our doc about it too, to see what they say.