8/26/20 - New casts

 Wednesdays are always a bit hectic with soaking casts off at home and then going out to the ortho appointment to get new casts put on.  Today was as busy as ever, adding in extra  nerves because there would be a procedure to snip her achiles tendons before the casting this afternoon! It could have been our last casting day... but one of Annelise's tendons was blergalerger than the other (not actually the term used by the doctor... but I forget the technical anatomical issue), so we will go back next week when her doctor thinks she will be finally ready for the last casting with her foot in a standing position. 

We had to adjust some expectations, because we didn't realize that although she will have her last serial casting a

ppointment,  the last cast stays on for 3 weeks!😝  so close!

Because of Covid, I was the only one allowed to go in with Annelise to her appointment.  They have parents wait in the lobby usually when they do the tendon release procedure (thanks to the parents who have fainted before, I can't be in the room!😆) I asked to wait right outside the room though, just because it's always good to plan for an emergency with the trach, no matter how unlikely it will be.  No issues arose, thank you God, and the sad but so exciting thing that happened while I was outside the room was.... I could hear her! She was yelling at the doctor! It was faint enough that I had to double check with them when I came back in, but sure enough, she was mad, and she was loud about it!  There was a long while where we didn't hear any sounds come from her, so to hear her voice through a closed door and across a hallway is incredible.😁

8/23 Weekend

 Here are some of the fun parts of our weekend🥰 

I guess I won't be diving into a career in costume design.  I had to redo her ballerina casts, because the ribbon ones didn't hold up and lasted about one day😆

I'm posting a video of us playing with a toy so you all can see her progress with it as time goes on!

We now live a complex medical life, but while God gives us all breath, we are going to thank Him for our days (63 weeks for Annelise on Monday!) and give Him our future every time we notice ourselves dwelling on the what-ifs that seem to be even what-iffier lately!

Tomorrow she will be having a small procedure at her weekly casting appointment. We hope this will be the last cast needed. Before the casting, her doctor will release her Achilles tendons, so that she can lift her feet up more.  It is apparently a simple and common procedure, just needing some numbing cream on her ankles.  Please pray for wisdom for the medical professionals, and for comfort for Annelise.

Thank you!

Big stretch and bedhead

Playing with the Inny Bin

8/22/20

 I am having fun decorating Annelise's casts.  I won't miss them at all when they are gone though!  Hopefully that will be in less than two weeks!

8/16/20 Happy Sunday!

 Here is a YouTube video and some photos of the last few days :)

Annelise video

Prunes, sweet potatoes, peaches, and formula for her gtube meal

8/8/20

 The blood draw for her multiple labs was a success!  Took two tries, but I am grateful for the calm and optimistic attitudes of the team of two phlebotomists who helped us.  Annelise is my hero baby, she was such a trooper.

Today, she napped in her room!  I think I've only walked her in there a few times since we have been home!  It has been a storage and catch-all room for the longest time.  Still not cleared out, but we are making progress! 

It had been a long while since I sat in the rocker in her room.... I used to sit in that chair and wonder what it would be like to be a foster parent to a baby.... then I sat in the chair and rocked our first and only foster son for 4 weeks before he went to live with his extended family...then I sat in the chair and thought about what it would be like to have this baby.... then later, I sat in the chair and wondered if Annelise would ever make it home to her crib.... to see her there sleeping while I sat in the chair in her room was a real big deal!  ❤

Our friend Suzanne Lefler made this amazing quilt for our amazing girl with a 3rd copy of her 18th chromosome.  From so many genetic counseling and specialist appointments,  we got countless photocopies of a black and white, scientific version of this picture of all our pairs of chromosomes.  It just fills my heart every time I look at this one of a kind blessing!  How can words describe what it is like to have our girl celebrated for who she is, down to every last chromosome❤

8/6/20

 We've got some big girl food in Annelise's belly starting today!  Basically, they are just premade pouches of blended food, kinda looks like a giant serving of baby food.  We are splitting that with formula for now, and the goal as she grows, is to transition her off of formula.  The big prayer is that this change would decrease the amount of tummy bubbles for Annelise's little gut!  We would seriously have more time for fun and therapies during the day without me chasing those bubbles that make her uncomfortable.  

Speaking of uncomfortable, we are going out to get blood drawn for labs tomorrow.  I dread it, because of Annelise's little tiny veins, they often can't get the blood on the first try.  So hard to watch them stick her!

We will be brave though, and I'm reminded from the posts of all our friends whose cute little kids are in vacation bible school-at-home right now.... Jesus will give us the power!

We are on our 3rd set of casts now!  Her doctor said so far, looks as he would expect!  4 more weeks to go!

8/1/20

A few photos from our weekend❤