Bath and the future

I wanted to say thanks  to everyone who wrote us emails and letters and facebook messages! Or to those of you just willing to be a listening ear. (Or to my Deaf friends, a patient eye.) I appreciate my friends and family so so much! It’s been extremely encouraging! Thank you especially  for thinking and  praying for us, and then telling us about it so we knew we were loved! I think God’s been listening. So to reward you all, I have some good news.

I couldn’t take any pictures because I was in there with her, but Laelia had a GREAT bath time tonight! We worked on holding our breath and kicking our legs and floating. Although she’s not thrilled with the water, and did freak out for a minute when she fell forward,  this was the least scared I’ve ever seen her! And that’s saying something since I pretty much threw her infant tub in the hall, filled the big tub with water to her  shoulders and plunked her in there. (She’s only had two real baths in her life–the last one in Seattle–and the water was only an inch deep.) In the water I  noticed that Laelia’s legs are just starting to show that abnormal thinness that I know is coming. I was hoping her baby fat would stick around forever, but there’s no helping the fact that she has amyoplastic limbs. It just reminded me how affected with this she is and how much we need to work on therapy. We know pool therapy is something we want to do–it’s  something that most kids with arthrogryposis do–and  this is one HUGE step toward that! So Yay!

Later that night while cooking  I found  I  didn’t have enough cheese for the broccoli so Charley and Laelia started  singing a familiar Beyonce song during dinner, but with the lyrics, “If you like it then you shoulda melted cheese on it.” :)

I love my family so much!

We also taught  Laelia how to spit after brushing her teeth tonight. Lotta firsts for one little girl! She is really terrible at it though. :)

She has one last trick she did for the first time tonight, but I’m saving it until I can take a good video. Just stay in suspense until then! ;-P

As for the immediate future…

I’ve been researching our next step with Laelia’s condition. I think I may have found a doctor willing to do a surgery to help Lali gain mobility. It means flying to Philadelphia, maybe more than once, and possibly having the surgery done there on sight. And this all may be happening in September. (Although NOTHING is set yet…at all.) Please, if you’re a praying person, pray pray pray! This is just about our last option and there’s so many road blocks already in our way. And believe me I don’t want to do surgery and I especially don’t want to fly to another hospital with my girlie pie, but this may be her best option. We’ll also set up another appointment with our local doctors and surgeon to go over our plans in the coming weeks. My very next step is to  establish email communication with the doctor I want in Philly. Wish me luck! I’m attaching pictures so hopefully he doesn’t have a spam filter! :)        

Wow. I just got another email while I was writing this blog about Shriner’s Hospital  in Philadelphia and their  orthopedic doctor. (Thanks Tracey! You’re amazing!)  Arthrogryposis is a specialty there! They actually have a plan of action for cases like Laelia’s.  Wow!  Thank you Seattle for the ideas and diagnosis! Without going there  we wouldn’t be on this crazy path we’re now on! I hope this works out!

2 Responses to “Bath and the future”

  1. Tam says:

    good luck! a nice bath sounds heavenly! We have only showers in our house and I LOVE a good bath and a good book. I eye up other people’s bathtubs when we are at their houses lol. wont be long and I bet she loves baths and wants them 4 times a day! we too are considering our options and philly is one of them. But I did find a local that would consider trying some dynamic splints to maybe avoid a fixater.

  2. Tracey S says:

    You’re welcome! :-D I hope it all works out & you don’t encounter too many road blocks! Please know I’m here if you have questions! I’m a veteran traveler to Philly & as an adult w/ AMC (who has had too many unnecessary surgeries) I really like the approach the Philly Team takes w/ these kids!

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