Update and More Pictures :)

Hi! I know that many of you are praying for us and we cannot tell you how much you are blessing us...thank you! I also know it's been a little bit since I filled you in on what's up with us so I thought I'd do that. :)
Selah had her CT scan done in March. God worked it out and it went so smoothly...thanks to our faithful prayer warriors too! We will go to UMC to meet the Craniofacial team and doctors to discuss the jaw surgery and their recommendations, timeline, etc...based on the updated CT scan images they have. Our appointment with them is the first week in May. If we aren't on the same page with them then we will probably look into a consult with the team at Arkansas and possibly another location. We aren't really ready to start the jaw surgery process but we are also unsure about what's best for Selah. She is doing so good and staying healthy and it's such a blessing to have this time with her. We dread the surgeries, hospital stays, pain for her, etc. But, we also want her to be able to open her mouth though and to maybe be able to have her trach removed eventually...hopefully. She's getting teeth in now...two currently...and we can't get into her mouth to check them out...unless you pry her mouth open and really upset her and are possibly hurting her. She does have an aversion to touching her mouth or putting food to it, especially here lately, but then at times she can be so interested in food too. We want her to be able to taste it and try eating one day.  I just don't know if these outweigh all that is involved with surgery. It really weighs heavy on my heart. I want her to not have any pain, to be able to just be a kiddo, to know that we don't want to have to cause her any hurt...to know we love her just as she is. I know it can be so much worse and I try to be thankful for how blessed we are. I just have moments of wanting it to be all "ok" and just as I'd prefer...just as I'm comfortable with. God reminds me though, that He continues to have His hand on Selah and us and that in all of it He is working and He is enough.
On a lighter note, Selah is now clapping and has learned to shake her head "no." We are working on standing. She requires some assistance but she is doing much better with bearing weight on her feet. She has some neon blue "hot pants" that are super tight and they keep her hips close together...so she doesn't stand with her legs so far apart. She does not love tummy time but is rolling from her tummy to her side...with some prompting. We saw her arm/hand doctor recently and he said that because of varying factors that she won't crawl but will sit and scoot and eventually stand and then walk. This made me feel relieved because she doesn't tolerate her tummy time or doesn't show any interest in crawling. It makes sense though that she won't because it is physically not possible...basically. She has learned she can stand though and she is getting more confident in it. She does not mind the praise that comes along with her accomplishments. She is also hearing and listening better, especially with her aid. We still have a loaner aid and are in the process of seeing if insurance will help cover it. Selah pays a lot of attention to the sign language we use. She doesn't do the signs yet but she is very attentive to them and responds so well. She is also very indpendent and knows what she likes...she gets this honest! Each morning we give her a choice between two outfits and she'll usually smile and reach for the one she wants. One morning though I was standing and holding her in her closet while I picked out two outfit choices. I stood there and showed them to her and she shook her head "no" and looked up over them to her other clothes hanging up...with a look like, "I'm not impressed with either of these choices." She eyed a particular dress and when I gave it to her she was very excited...she knew which she wanted to priss around in that day!
Selah is also working on tolerating her speaking valve. It's the little purple piece you'll see on the end of her trach...in some of the pictures. Normally she breathes in and out of her trach. When we put the speaking valve on though it changes it up for her. The air comes in the valve but then forces it up through her vocal folds and into her mouth and nose. The air can only come in the valve and only out this other way so it's different than when she doesn't have it on and she doesn't always tolerate it. Sometimes I put the valve on and she immediately begings crying and gags and coughs it off. Sometimes I'll put it on and she's fine and she makes vocalizations. The valve amplifies the vocalizations and its so sweet to hear her voice...it's just little squeals and groans she makes. It's like she's talking though and she'll get loud and quiet and raise her eyebrows while she makes different facial expressions. I'll try to encourage her to make the sounds by saying, "oh really, I hear you, oh wow" or so on. She responds and will continue to vocalize. Yes, I'd love for her to be able to open her mouth and say words...for her to say "mommy"...but that's not where we're at right now and I'm so thankful to be able to hear those sweet squeals! I took a video of it on my phone but can't figure how to get it on the computer...I'll work on it. ;)

She has her speaking valve on and her hearing aid...tolerating them both!

We were blowing bubbles and she somehow ended up with the bubble wand. When I tried
 to take it to blow more bubbles she would let me know she wasn't happy :)

She's standing on her own...just got her hands resting on me for stability. She's wearing her "hot pants" too.

In her car seat and I just got a sweet pic. The doll she has is one of her favorites. She just looks at it and "talks" to it.

I really like this picture if I may say so! :) Still in her car seat...striking poses!

I'm am humbled and thankful for this sweet time with her. A dear friend of mine shared with me something that I'm trying to remember...in all of it...the good, the hard, the tiredness, the uncertainty, and the time and blessings with Selah and each other...soak it all in, soak it up!