1/21/22

 The days continue to improve as Annelise recovers from her surgery.... and her 2nd cold!!😳 No idea where she picked that up.  We brought her to the covid test she had to have on Sunday, but they even came out to the car, we didn't bring her inside... then we quarantined at home until arriving at the hospital by 6am on Tuesday.  She was super clear all day... the pulmonologist even mentioned how great and clear her lungs looked that morning after she looked in her lungs with a camera... then things quickly changed super late on Tuesday, and by Wednesday, we got the results from the sample they tested, positive for rhino enterovirus.  Ugh.  We knew we were taking a bigger risk by having a procedure done in the winter. She is making use of her new larger trach, and although this is a bigger cold than her first one was, she is still handling it super well, and I am so happy about that.  She has been feeling pretty crummy for the past couple days, but she woke up with a smile this morning, which makes me smile too!

Thank you Jesus for these happy mornings😍

1/19/22 The day after foot surgery

 Our pink and purple dreamboat.🥰  She seems to be feeling better than last night, with moments of playfulness. Onward to the recovery💗

Thank you for the prayer for our whole family!

Elective surgeries are more difficult discision-wise for us because in order to elect better breathing and better informed future decisions about her airway from her doctors, and in order to elect more ways to experience her world and to get the health benefits from bearing weight on her feet... we elect to put our most favorite little person, who looks to us for all of her cares and comfort, through some really hard stuff. Again.

But today is already better than yesterday. She now has a bigger trach, and some dear trisomy family friends will give us extra trachs that their amazing daughter grew out of, that just so happen to be the size and style that we'll be ordering for Annelise!  Their gracious gift will allow us to skip about 2 months of dealing with this annoying trach that sticks straight out and has a "v" shaped flange that in my opinion her neck isn't big enough for.  The doctor already ordered them... but they are considered a custom style, so the company that supplies our medical equipment and supplies doesn't keep them in stock, and that company has what I imagine to be a circus as their business model.... so who knows when we would get them.  

Prayer requests would be for

pain management, poop management, and goober management while she gets to feeling better!

Big praises for getting us home last night🤩

1/18/22 Surgery day

 We are hoooome!  Thank the Lord for his many blessings today❤

3:30 We are done and she is waking up!  It looks like she will be ok to go home tonight!  Praise the Lord!  I feel so beyond blessed to have these days.  She is still in and out of sleep now.  She wakes up, plays with wires, then goes back to sleep😄 Typical Annelise

9:13am: I already have an update!

The Pulmonologist came to report on their scope, and said that the IV went in quickly! Hallelujah! 

Annelise's lungs look good and are clear. They took some samples to send off to make sure nothing surprising is growing in there.

While I was writing this update, ENT came out to tell me about the 3.5 upsize, confirmed that her airway is still super crowded with her small jaw, so getting the trach removed wouldn't be safe at this time, but if she grows a lot, maybe. So time will tell if getting the trach out is part of God's plan for her.  She didn't get ear tubes again this time because those little ear canals are still so tiny.  That's also a possibility in the future.  We are so happy that she hasn't had ear infections, we are still hoping that tubes in the future could elevate her hearing level a bit.

Now it's time for our Ortho to do the big job.  About 90 minutes for each foot.  I was given a choice of cast colors. She will have casts again for about 6 weeks.

They just brought her to the OR!

Pre-op talk was long, since there are 3 doctors involved, but she was so happy and looked intently as all the doctors spoke about their plans for the day.

I'm sitting in the waiting area praying for a successful placement of an iv, one of the hardest things for Annelise with her teeny tiny veins.  I'm so impressed that the word had been passed about her being a "hard stick" that the anesthesiologist brought it up before I even  said anything.  Feeling like they know what's going on with my baby makes it a tiny bit easier to watch them wheel her back.  A tiny bit.  Kevin is praying too, but we decided not to both come in to the waiting area.  Just in case any germs are around, we will all share germs as a family living in the same house, but not being exposed at the same time might make it easier to care for Annelise if we have the worst days at different times.  Hoping we all stay healthy of course!

Thank you for praying with us for a great day at work for all of her providers!  We have so much praise for our good God who loves Annelise so much! Us too!🥰

1/15/22

 31 months today! We had a pre-op appointment today with her orthopedic surgeon. She will be having surgery on her feet, along with 2 scopes of her airway from her pulmonologist and ENT.  There's a probability of upsizing her trach, and a possibility of adding ear tubes.  

Surgery is set for next week, January 18 bright and early first thing in the morning.

Will be happy to be on the other side of it.

The goals for these procedures are to get her feet in the right position so they won't be damaged as she practices bearing weight in her stander. 

Also to have a trach that is larger in diameter so she won't be as likely to get it plugged up, especially if she gets a respiratory illness.

Ear tubes might give her more hearing ability..  just waiting to find out what God has planned for her hearing in the near future.  

Her pulmonologist hasn't taken a look herself at Annelise's airway.  She invited herself to the party on surgery day, which I absolutely love.  There is a scope that she can do right there in her office during a regular check-up... but why put Annelise through a scope in the office while awake, when she can join in and take a look while Annelise is under anesthesia? I'm thankful for her being proactive about that.. We are very happy with our care team for Annelise.

31 months!  So funny what time and love can do.  If I pick apart periods of time in the past 31 months, there have been some intense and stressful moments!  But all I can think of to say right now with my whole heart is "31 months, we've loved every single minute with you, Annelise!" Powered by prayer and a God who carries the weight for us when it is so heavy. Onward to next month we go🤩💖