Say Cheese!!!!

Little Princess

Cheerleader on the sideline!

Please take note of this because you may not ever see her in one of these again. It's a foam block pit, which she loved, but is covered with no telling WHAT kind of germs!!!! YUCK!!!! 

Striking a pose in her cowgirl gear

She likes to try to "taste" and put it to her lips. She was digging this cheesecake! 

From the fall on our trip to Boston but it's one of my favorites!

Big girlie is four now!! Mama's hand sanitizing wipes in hand..I'm so proud! 

Easter this year

Last but not least...how we roll!!! hahaha:)


I will return soon with some updates...for real! Thanks for your continued support and prayers! Much love to you!

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!

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

What's New...Rolling Into Boston!

So...to say I'm overdue on a new post and update would be very much an understatement....so truly sorry!! But, I'm back to try to briefly recap the past several months, which have been very eventful.
In June we went back down to the hospital in Orlando and the physicians fully sedated Selah and got some information and images of her airway, nasal cavity, and limited views of her oral cavity and jaw. Our hopes were that after these procedures and after gathering that information, we'd be able to know whether the doctor recommended going ahead with the jaw surgeries or whether he thought it'd be best to wait on them. The plan was to give him a few weeks to get some sort of game plan and timeline and to touch base through telephone and email.
So, fast forward a month later...I tried to patiently allow ample time before I began calling to inquire about his recommendations...and I began leaving message after message for him and his nurse to return my calls. I left several messages, without a response, over the course of several weeks...a month even. I eventually spoke with his nurse, more than once, and explained that we just wanted to know his recommendations and timeline or game plan for the jaw surgeries. And, still no response from him or no response from the nurse...who was supposed to discuss it with him and return my call. A month or maybe two months later, I called the hospital and tried go find out if I could just go through them to make an appointment. When I spoke with a representative though I was told that this doctor was no longer at this hospital and therefore not making appointments for any patients. I wasn't sure what to think other than this seemed to be a closed door...maybe permanently or maybe just temporarily...but a closed door and an answer to prayers that God would continue to guide us and let doors open and close in His ways and timing. It didn't and still doesn't make sense to us really because we liked this doctor and we got pretty far with getting diagnostic procedures and images done...yet it just came to a halt. Or I guess what seems like a halt to us but maybe just a pause to God...that said, let me fill in some gaps...
When we were down at the Orlando hospital in June, we also met with the Neurosurgeon and Orthopedic doctors.  We had appointments with them on another day and they were just monitoring some of Selah's conditions. During the appointment with the Orthopedic doc, he asked if we'd considered any more about the Policization surgery he'd previously mentioned to us...in a previous appointment. We told him we hadn't given it much thought because we'd always been told (by different physicians) that these particular surgeries would not be a priority because the jaw surgeries needed to happen first. He recommended though that we seriously consider proceeding with these surgeries and having them completed by the time she is kindergarten age. He also said he'd been corresponding with another physician, who is more familiar and experienced with the abnormalities(no thumbs) and this surgery, and he recommended that we consider going ahead with the surgeries also. The physician he had been speaking with is in Boston and has more experience with these type of abnormalities and surgeries that try to remedy them. The surgery is basically where Selah's index finger is rotated over slightly and shortened and then after they work their magic and with therapy, this finger is supposed to start functioning like a thumb. This will hopefully help with her fine motor skills that are difficult and really impossible for her...pinch and grasping, buttoning, zippers, scissors, and so on.  So, we hadn't even thought about pursuing this surgery anytime soon and we definitely hadn't considered going so far away to pursue it but it had suddenly been brought up...so unexpectedly.
That said...I began to speak with the Boston doctor office to find out about consults and all that good stuff and we made an appointment and drive up to meet the doctor in July. He said that he definitely recommended going forward with these surgeries(one hand at a time, not at the same time) and having them "completed" by kindergarten age. So, we left our appointment with him with a good first impression and actually considering moving forward with the surgeries. At this same time, I'm calling and leaving messages, which are not returned, for the Orlando doctor(about his recommendations for her jaw surgeries).
So, as that one door closed unexpectedly and surprisingly, another one opened and very smoothly and fairly quickly fell into place. And, here we are...in Boston...
Her left hand surgery is set for tomorrow and we will have to see how it goes from there. We don't know what to expect or anything really. So, we're trying to take it step by step. If all goes well then we will plan to have her right hand surgery here in the spring. We also met with part of the team here that is going to look at her previous images(done at the Orlando hospital) and see what they recommend about her jaw and the timeline on those surgeries.  They are going to step into her surgery tomorrow while she's under sedation and look around her jaw, mouth, etc and get a feel for what all she's got going on.
Well...hope that this has made a little sense...it's a lot to try to pack in and make sense of. I'd like to include a lot more but it might become a novel, ha. I'll try to include some of that on the next post.
Anyway, I sure hope do appreciate the readers that have patiently stuck with me...I fully intended to post much much more often than I do...sorry, but thank you. Thank you for the continued prayers and support too! I will be back with a surgical update...:)
Much love and appreciation...thank you!!

Been too long...I know

Our first Mardi Gras parade...she is winding down but she enjoyed it...as you can see by the large amount of beads around her neck. Mama struggled with the "sanitary condition" of those beads but Daddy said, "let it go" :) 

Birthday Girl...3years old!! Couldn't get a smile :) 

So, I will be back soon with an update and hopefully some more pictures...either myself or my computer wasn't cooperating...will try it again soon...have my word! :)

Well...Hi!

Hi again..thought I'd give a little update. We were scheduled to go to Orlando this past week for follow-up appointments and for some diagnostic procedures. The day before we were supposed to leave Selah fell very hard and hurt her nose. After an extended ER visit and a CT scan, we were told her nose wasn't broken. It was very bruised and swollen though and a possible fracture hasn't been ruled out. So, because some of the procedures would've involved her nasal cavity we had to cancel the appointments. We are working on when we will reschedule everything.
She has been falling a lot more often over the past month or so. She doesn't put her arms out to catch herself so typically her face and trach take the impact. This time her nose seems to have taken it all!:( It's much better though than it was on Monday! We are working with Selah's physical therapist because Selah's feet and ankles are turning in badly. This does cause her to stumble and fall a lot. We're starting to try different inserts in her shoes and so far the first pair hasn't helped. We're supposed to try a different pair tomorrow. We also have an appointment scheduled in April with our Orthopedic doctor to have x-rays and to look at her ankles and feet. And, we'll also see the neurosurgeon again because they mentioned that her falling frequently can be a sign of something that needs to be checked out. So, we'll see. I know toddlers fall and get bumps and bruises but seeing her fall on a routine basis and really hurt her face, trach, etc. isn't fun. She is a tough girlie though...a lot tougher than her mama!!
So, that's been our action for the week, ha. I am going to be honest and say I was relieved that our trip  was postponed. I hate not getting to see Spencer's grandparents but I was glad that the procedures and the next step closer to surgery were put off...just one more time. Most people probably don't get that...even Spencer feels differently than I do. I can't help it though. If I could avoid any type of surgery, pain, hospital stay for Selah, then I would. While Spencer sees the long term goal and outcome, I see the invasive surgeries, pain, sedation for prolonged times while she recovers, possible risks and complications, and so on. I just see my sweet baby, who is so full of life and love, hurting and rather than being a kiddo, spending time in the hospital. It just hurts my heart. And, yes I would love to see Selah take a big bite of food or I would melt if I could hear her sweet voice say mama and I love you, but I can't get past what all it will take for that to happen...I just can't!
This is where God comes in and I have to continuously say take it God please, take it and hold her tight and don't let go. I know His truths and promises and I believe but oh sometimes my mama's heart and emotions try to take over...I have to say it's your's Heavenly Father....and surrender yet again...
And, on that note...kind of...I've had so much on my heart here lately in regards to some of the trials others are going through. Some of them are close friends or family and some are just prayer needs that have brought to my attention. Either way, it's weariness, and darkness, and grief, and loss that  surrounds those going through it...trying to trust, trying to keep faith, trying to surrender...
To my sweet cousin and her parents who have been on a long journey and still have further to go, to those friends who have had to watch their precious little one's life come and go and yet they still have so much love to give them, to the friends who have suddenly and so unexpectantly had to see their dear mama leave this world with so many memories left to make, to so many others dealing with life threatening illnesses and battling deep depression, and I can go on...  I lift you up and in Jesus name I continue to pray for comfort, hope, and peace...beyond any understanding...in your surrender...

"Broken Hallelujah" by the Afters
I can barely stand right now, everything is crashing down, and I wonder where you are.
I try to find the words to pray, I don't always know what to say, but you're the one that can hear my heart. Even though I don't know what your plan is, I know you're making beauty from these ashes.
I've seen joy and I've seen pain and on my knees I call your name...here's my broken Hallelujah.
With nothing left to hold on to, I raise these empty hands to you...Hallelujah.
You know the things that brought me here, you know the story of every tear, 'cause you've been here from the start. Even though I don't what your plan is, I know you're making beauty from these ashes.
I've seen joy and I've seen pain and on my knees I call your name...here's my broken Hallelujah.
With nothing left to hold on to, I raise these empty hands to you...Hallelujah.
When all is taken away, don't let my heart change...let me always sing Hallelujah.
When I feel afraid, don't let my hope be erased...let me always sing Hallelujah.
I will always sing Hallelujah...here's my broken Hallelujah.

Psalm 33:20-22 "We wait in hope for the Lord; He is our help and our shield. In Him our hearts rejoice, for we trust in His holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you"

Until next time...thanks so much for your continued prayers and support...much love to you!!!

As Promised...Sort Of :)

She loves her BB...he's just wanting to break free, ha

At her therapy center...big girl holding her back pack!

Her BFF Stud...he tolerates her petting him, hugging him, reading books to him :) 

Wanted to try on mama's scarf

Just being silly...that's her face when i tell her to smile

Love it...:)

I'm having difficulty getting a video on here but I'm not giving up. Hope the pics will do for now;)