Thursday, August 27, 2009

We're Home!
After a long day of learning how to take care of our child, and waiting 3 extra hours for her prescriptions, we finally made it home last night. I have to say it was pretty overwhelming to get home, unpack the necessary things and to get all of her food pump stuff and medications organized. Once we made a list of what meds & food need to be given when, it's made it much easier to deal with! Otherwise, everything else has gone really well. Mya threw up twice last night, she's been doing it almost every time she wakes up from a deep sleep. She has so much mucus in her throat, she starts coughing really deep, causing her to throw up. Needless to say, that's the only negative right now (plus the formula she's on REALLY stinks). I'm really looking forward to her first bath tonight, we have to wait to have Rob's hands too, since I don't trust her strength of sitting alone right now. She has had a really good day, we've also weaned another step down on her meds, and no visible signs of withdrawal. Thank God. She's been awake a lot today, playing with birthday toys, books and gifts people have sent our direction. They've been awesome! It's so fun to see a normal little Mya. She even scowled at Rob today! It was great! She's been able to sit for a much longer time today on her own, and she tried a couple of times to crawl, but has learned her body doesn't want to work very well yet. We were also able to bring home a foam wedge that she can have in her crib and on the living room floor for nap time. It's working out really well. I'm not sure how easy this feeding tube will be to keep in her nose once she realizes how to take it out. I'm pretty sure the day is coming soon! We have an appointment next Thursday for a swallow test for Mya, back at Children's. This is the next thing we're praying for. They're going to give her a drink of her normal formula, but will put some dye in it and will track how it's being taken in. This is a benchmark time, because if she's not able to swallow thin liquids (which will be the most difficult for her, viscous liquids will be easier), then she'll have to stay on the feeding tube possibly a month or two longer. That would be a big bummer, as I'm pretty sure the daycare wouldn't be willing to manage such a difficult schedule. So, it could require a shift in lifestyle for a while longer. However, I'm praying that we don't have to make any different choices!

Here is Mya's personal pharmacy...

Surprisingly, my flowers are looking great! We've had cool enough weather that we came home to somewhat of a nice looking yard! My first harvest of my DELICIOUS cherry tomatoes! I sure wish Mya could enjoy them with me! Hopefully she'll be able to next week!

Chillin on the living room floor, listening to her CD from Aunt Michelle

15 comments:

Anna said...

yay!! I am so happy that you are all finally home. Praise God!!

Lydia said...

I am so happy for you guys! Mya looks great...

Michelle said...

This is the absolute best news!!!! I'm so glad she's enjoying the books and cds! It's soo good to see her looking normal again!

AngMomof3 said...

Welcome Home, Mya! Love that y'all can be back to flowers at your porch and tomatoes in the back yard.

Enjoy your time together at home. The days will go by so quick. Next thing you know Mya will be headed off to third grade... AAAHHHH!

Sawyers said...

This sure makes Grandpa and me smile....by the way, I have family leave and can come another week as necessary....I'd love to come play again ---man she is a wiggler and looks so happy to be home. I know there will some bumps in the road, but God is still holding you all in the palm of HIS Big Hands. LOVE MOM

Tessa said...

I am so happy Mya is home! She looks great, it's nice to see her chubby little legs again.

Chris and Britt said...

YIPPEE!!!! How good it looks to see her in your own home. And to have pretty flowers and garden to come home to- God's blessings are abundant!

jaime.ledger said...

I am so happy for you guys! I know it will be a lot better to be home! She looks great!

Christi said...

Julie and Rob - what a wonderful way to start the weekend! Knowing Mya is home brings so much joy to our hearts.

Sawyers said...

Turkey Don just called to find out how Mya was doing!Hope you are able to relax some now .Love Dad

Carissalayla said...

Mya sure looks happy to be playing with all her toys and that wedge bed looks very comfortable, I am so happy you are home!

Krisy said...

Praise God! Yeah!

Lindley Family said...

Man, oh man, it's good to see you guys home!

We use a little bathseat for our little one-year-old b/c he's super wiggly. We still use it even though Max can sit up on his own. I wonder if you guys wouldn't be able to use something like this..... http://www.toysrus.com/product/index.jsp?productId=2969577

Hilty Sprouts! said...

Praise God you are finally home! Mya looks so good! I will keep praying for her swallowing to return to normal soon.

Jennifer

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