5/27/20- 2 weeks until the big ONE!

Hello!  This blog is duplicate information of updates that are posted to facebook as well.
If you don't have a facebook page, please email your photos of Annelise rocks to me at jnet.buchanan@gmail.com
So excited to celebrate the birthday girl!

 Tired of this photo shoot :)

This adorable outfit was ha dad down from two of our toddler friends with trisomies in Southern California❤

5/21/20

I think we are pretty tired, but more in love with our sweet baby and how well she is doing!
We have a bummer and a blessing all in one today... after we started giving her sweet potatoes through her g-tube, we noticed that when she was laying down, already on an incline, she had orange tinted drool. We had stopped her reflux meds for weeks already, and she seemed to be fine... but orange drool after sweet potatoes points to acid reflux. The blessing is that we discovered it while it is mild, and there's no indication that anything that came up from her tummy bothered her lungs🥳.... bummer is the disappointment of having to add a daily med back on the list.  Her GI doctor wasn't surprised at all, due to Annelise's low muscle tone, she said it's very common for the muscle that keeps the food in the belly to have low tone as well.  I know God has a plan, but since I also know He wants me to share what's on my heart.... I'm praying for this med to work beautifully, and for her muscle tone all over to shape up🥰
She's working on it!  💪😁🏋️‍♀️
I've been getting some questions about what to get for Annelise's 1st birthday on June 10th!  Here's  a link to her Amazon wish list if you are interested.  Of course please do not feel obligated whatsoever.

https://www.amazon.com/hz/wishlist/ls/2T903DZL9G4OP?ref_=wl_share

We aren't sure how we will be celebrating her big milestone of ONE!! Most likely via video somethingorother...
Here's a video for you today that shows off how she plays with stuff these days.

Annelise video

5/15/20 - First Solid Food!

Here's a fun update! Annelise had her first babyfood today, sweet potatoes, mixed with her formula/breastmilk combo through her g-tube. No signs of it bothering her tummy at all yet.  The plan is to check for food intolerance one at a time for the ingredients that are in a pre-made mix of blended food.  It feels like there are about a bazillion ways to feed a baby with a g-tube.  We have friends who stay on formula for years and years... friends who use a packaged blended food product like we plan to use.... friends that just take the food they use for the whole family's meal and stick it all in a blender... or a mix of all those things.  As we are starting out, I am hoping that maybe real food will change the amount of gas bubbles that bother us all day long.  If I find that I can fit blending our own food into the weekly activities, I'm interested in trying it out in the future.... for now though, I can't even find the time to clean off the dining room table! So I'm trying to set us up for success by taking baby steps. 😁👍
Soaking in this healthy time with our precious girl as we get ready for her 1st BIRTHDAY!  My big plans for her half bday were messed up by a UTI, so specifically praying for UTI and shunt malfunctions to stay awaaaaay. Thank you all for continuing to keep our girl in your hearts and pray for her and our family.  This is the part of the post that is hard to write just because "grateful" seems like such a little word for such a big feeling. My heart is so grateful overflowing for God's goodness through the hardest year of my life, and the blessing of this time to get to know and love on our sweet girl!  Words don't seem enough.  I'll leave you with some photos!

5/12/20 Virtual PT

Annelise had a virtual Physical Therapy appointment today.  So now we have PT and OT weekly, both via Zoom for now.  I'm excited to get more ideas about how to help Annelise grow those muscles!
She has low muscle tone pretty much all over.  We are working toward the goal of sitting unassisted.  The point is to make it fun, so no matter how long it takes for her to get there, we'll enjoy the journey.
The casting of her feet continues to be put off as we are still trying to stay at home as much as possible.  I'm so lucky to get to spend the day with this babe, she's just amazing.

5/10/20 - Happy Mother's Day and 11 month birthday

My first Mother's Day and Annelise's 11-month birthday!  We got to see lots of family on Zoom today, and Annelise was so sweet to buy me exactly what I wanted for Mother's Day!  Dirt for the backyard😄  Vegetable garden here we come!  Thanks baby!🥰🌱❤

If I don't have your address and you would like a 1st birthday announcement in the mail, I'd love to send you one!  Message me with your address please!
Jnet.buchanan@gmail.com

Q

5/8/2020 prayer requests

Some prayer requests!
First off, praise the Lord for the amazing time we have had with Annelise as she grows at home.  She wakes up with a smile, even at 3am!🤦‍♀️😆 It's my dream come true for her to have the joy that she has.
Asking for provision for ventilator circuits.  There is a shortage nationwide due to more people using ventilators while battling the covid 19 virus.  We got half of our monthly supply, which means I either need to wash the disposable item that wasn't made to be washed, or leave it for longer than recommended.  It is the tubing that carries humidified air from Annelise's ventilator, directly to her lungs, so to keep that fresh and bacterial free is essential.  Asking the Lord to keep the bacteria bugs out of Annelise's lungs.

I'd like to also ask for some prayer regarding my quest (yes, since October I have been trying to get a heated humidification system for my babe, so the mission has been upgraded to quest status) for a piece of equipment that will help Annelise now, and in the future when we are ready to wean her from the ventilator at night.  The equipment is coded in a way that takes an extra step to be approved by insurance.... and getting our medical equipment supplier to take the next step has been a gigantic challenge.  Praying and asking for wisdom regarding how to get the "myAirvo2" or what in the world else we can use in its place!

Thank you family and friends!❤❤❤

4/30/20 - She laughs!

Got the giggle on video! Glory to God for this girl's joy!😍

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