Sunday, January 18, 2015

Through the Clouds...

I Corinthians 13:12 "Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known"

Hi! I know I said I would try to work on getting some current video and pictures on here and I will...soon...really! For now I thought I'd give an update that I forgot to include on the previous post. When we were in Boston in October for Selah's surgeries we did meet with two members of the Craniofacial and Plastic Surgery Team. We met them informally to just briefly discuss our history of looking into jaw surgeries and where we are currently...which is unsure of what or where or who or when...ha but really! Basically we left it as we would schedule formal appointments and evaluations with the team in the Spring, when we plan to come back for her other hand surgery. So, we didn't leave really with any clarity on our next step for those surgeries but we did get a feel for whether or not it was a location we wanted to start pursuing the surgeries at. We both think we definitely want to meet with all the team when we are back up there and discuss the options and recommendations.
With that being said the weight of those surgeries and all that it entails is heavy on my mind and my heart most often at night...when I'm still and it all just hits. I think about how badly sweet Selah just wants to tell me with her words what she wants me to know. She has so much in there and she sure tries with her signing and at times her iPad but she often just wants me to hear and understand that sweet and persistent little voice. It hurts me that she can't tell me the words. I think about her teeth that are on her lower jaw and wonder if they are OK or if they may fall out, like baby teeth...what then!? I wonder if they are causing trauma anywhere in her mouth since they're just fixed there and I just want to be able to help her and to protect her. And believe me when I say that I would NOT change a thing about my beautiful baby girl...created in God's image...but it hurts that some out there don't see her that way and they make it apparent. I try to overlook the stares, the ones where they don't smile but just gawk, but I'd like to give them a hefty throat punch, ha. I also try to overlook the kiddos that ask awkward questions or just can't turn there head because they're staring at her. This weekend we were in a public place and there were three little girls that went out of there way to look at Selah. They proceeded to start to make fun of the way she looked and snicker to each other. I was taking this all in from a distance and thankfully Selah didn't have a clue...she never does. I wanted to snatch them up and be a little "nasty" but I just sat there...heart broken even more than mad...it hurts my mama heart...
Now I know that's heavy and I don't mean it to get pity or "woe is me" or anything like that...really! It's just all been heavy on my heart..more so here lately. God, being the personal and attentive Heavenly Father He is, has continued to remind to lean into Him...to keep my eyes looking up to Him..to believe and give it to Him...
Here recently we were driving and it was a overcast morning and it was cold and bleak. I looked up there was a break in the clouds and through it was some sunlight...those beams that seem like Heaven is shining down. God reassured me to keep looking up, to keep looking to Him, and to trust that His light and His ways and His goodness will always shine through. He is greater than all those "clouds" that cover and He is enough...He always will be...
So, I'm trying to do that...look up and give thanks for the abundant blessings in my life and for His ever faithful provision. I look into sweet Selah's eyes and I hear that beautiful voice and I try to just rest in the awe of that....just as it is...
Thank you for your continued support and prayers...I'll be back soon..much loves to you!

Monday, January 12, 2015

Well...Hello Again...So Sorry It's Been So Long....







OK, so I left off last with saying I'd give a post surgical update and of course that didn't happen...so sorry!! We've been home now since the latter part of October. Selah did well for both her stoma revision(around her trach) and her hand surgery. We've since gotten the big green(her color choice) cast off and then the hot pink splint(also her color choice) off. She's now free of any type of support for her hand. She's been attending Occupational Therapy (OT) since we've been home from Boston. She's doing pretty well with it...given she's a three year old:) She is trying. She and her "new thumb" are becoming better friends. She is starting to use it more. She's getting better with her pinch and doing some fine motor task. There isn't much strength in her grasp or her thumb though. The doctor monitoring her here, locally, said it can take a very long while for the strength to come...if it does at all. So, I wasn't expecting to hear that. I'm not sure what I expected...I think for her to heal up and begin using scissors, being able to button and zip, etc. That's not the case though. The doctor said "clinically" she is healing well and we need to give it some time. I'm trying to be hopeful and thankful for the praises we do have...healthy and safe surgery and recovery without complications, God orchestrated local care from a specialist....just sweet Selah as she is...:)
We plan to go back to Boston in the later part of Spring to have the surgery on her other hand...I believe that's what we're thinking...
As far as her trach site goes, the surgery really went well and she's healed nicely. The stoma revision has helped hold her trach in which is a relief.
I wanted to post some updated pictures with her cast and splint free but I will have to work on that. My faithful Blackberry has just been retired and Ive been forced to conform to the iPhone movement....haha. So, maybe I will at least be able to post some pictures and video a little more easily.  I will work on that...
For now, we are attending OT and working on the fine motor task and strengthening task for her grasp and thumb itself. She's a tough cookie and is much more tolerant than some other kiddos her age would be. My mama's heart just wants to know it was all worth it and that we made her go through the surgery and everything for a reason. I just have to try to release all the uncertainties and concerns to God...just trust and hope....
I really will try to post again very soon...really I will...I hope that there are some of you that have stuck with me...:) Your continued support and prayers are valued so much more than you will ever know..... I'll leave you with a recurrent message God has been reminding me of recently...until next time;)

"...And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge; that you may be filled to the measure of all the fullness of God. Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power at work within us..." Ephesians 3:17-20