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;) 

OMG....how long has it been??!!

We'll, hi from us! And, yes I still have the blog despite my long delay in posting. SO sorry!! I want to say, in my defense, that technology has not made it easy. Mine and Spencer's laptops crashed at the same time a few months back. They're no longer in operation. That has made it a challenge to get on the blog. At the moment I'm using an IPad and it is not my friend. I don't prefer this keypad and the pecking I have to do. I prefer my old school keyboard and home keys so I can type my words per min at a super fast pace...get any of that, ha. So, that's my primary reason for not being back before now. And, I've tried unsuccessfully to put pictures and video from the IPad onto the blog. We've yet to get a new laptop but maybe it won't be too long. Anyway, enough with the excuses...time for a little update.
Selah is such a big girl in so many aspects! She is using the potty so well and so proud of her panties! :) She is just wanting to do a lot of what kiddos her age are...play on the playground, learn to count and learn her letters, and to test all the limits she possibly can! She definitely gets this sassiness and determination honest...won't point fingers;)
She is staying pretty healthy, overall. She was pretty sick with pneumonia over Christmas but she didn't have to be hospitalized again thankfully. It doesn't take much for her to pick up a sickness so we still try to be cautious. I'm learning that it's very difficult to keep her in a bubble...although I'd like to sometimes. I will Lysol you down though if I feel it's necessary:) I'm just trying to keep her feeling good. She's a touch girlie for sure.
On the medical end, we go back to Orlando again in the spring. They will do some additional procedures to look at the anatomy of her nasal passages, oral cavity, airway, etc. after the doctor gets the information he needs then he'll let us know whether or not he recommends going on with the first jaw surgery or not. We will also see the neurosurgeon again while we're there to see how everything is looking.  Last time they checked she was still stable an didn't show anything that was an immediate concern. So, those will be the purposes for our next visit there.
And, that's about all for now. I know it's not a post with much "meat" to it and I am sorry...really. I am dragging and just don't have it in me this evening. But, I really will try to post again and give you a little more excitement! ;) I would so love to figure out getting pics and video on here from the IPad....it would speak louder than any of my words. I won't give up on it:)
For now, please know we truly appreciate your continued support!! Please hang in there with me...I will be back! :) Thanks, will all my heart!!

Hi, again!

So, it's been a little too long but I'm back to try to give an update. I'll start by saying we've had a good summer and I can't believe it's passed by already. Selah has been potty training and she's doing so well with it! She's so proud of her big girl panties and she will show them at anytime or any place...so modest like her mama, ha! She's also been going into a "regular" two year old class at church for the past few weeks. She's enjoying it and it's been going well. Her teachers are great and our precious friend Toto from the special needs class moved up with her too. Toto is there as support, extra hands, bodyguard...a true blessing! Selah has also started back to group therapy at the Children's Center and it's also a blessing! She's just getting to be a big girl!:)
Now, on the medical end...we've followed up with the neurosurgeon at UMMC. We will also follow up again with the physicians in Orlando within the next couple of months. For now there aren't any decisions made on the timeline for starting her jaw surgeries. We know that there are different abnormalities with several of her vertebrae...different issues with different vertebrae, in different areas. At the moment there isn't anything showing up as a result of the abnormalities...not affecting her at the moment as far as symptoms. She's currently "stable" and no immediate action is needed. But, from what we've been told and understand, it's likely that this will change. As to when or how or what we don't know. What may be done to intervene is also uncertain. The surgeries involved will be risky and invasive. For now the nuerosurgeon recommends monitoring her for the next couple of months and just waiting to see what happens...as she develops and grows. And, these concerns are all separate concerns, care, and surgeries from the jaw. I hope all of this makes some sense??!!
I'm just trying to process it all and make sense of it all. As we've learned about the vertebrae and spinal abnormalities and concerns regarding those, I've been overwhelmed. I'm overwhelmed with a feeling of helplessness, fear, hurt, and disappointment. I don't know...I feel Ike my mind and heart are whirling around with "who, what, why, when, how??" I don't want my baby girl to hurt or suffer. I don't want my sweet baby's life to consist of hospital stays and ongoing surgeries. I just don't want it to be so....hard at times...
So, all this has been what I've been feeling and thinking. In the middle of it all though, our faithful Heavenly Father has yet again reminded me that He has got it. He has gently been leading Spencer and myself to remember and cling to His promises and His faithful presence. He has been reminding us to look back at all He's done...immeasurably more than we can ask or imagine. He's reminding us to keep clinging to His truths and to just trust, just hope, and just thank Him...for all the good and blessings we have! 
So, we've been trying to just soak in sweet Selah and all the blessings she brings along. We've been trying to just cherish her precious smile and her silly and gentle and yet sassy spirit. We've been trying to just enjoy the time we've been given together and to try to remember and live out that it's all God's....to His glory...
"...And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character, and character, hope." Romans 5:2-4
Thank you for your continued support and prayers! I pray the blessings are returned to you!! And, as God is calling us to, I pray your able to also...hope on!!:) 

A Few Pictures ;)

Big girl, sitting on mama's bed...kinda close to the edge, huh?!

I really like this one! :)

Splashing in her water table...she has the "Blair look" at the moment!

Loving on one of our Stud...she's very easy with him and he is surprisingly tolerant of her...he looks a little scared at the moment?! He and BB are really sweet with her and she is very gentle and loving to them. I'm SO thankful that worked out so well...answered prayer!!! I love my "boys" and I love my baby! :)

Update!!

Hi again,
Thought I'd give you a brief update on where we're at with everything, as far as surgeries. For the time being we are just trying to keep Selah healthy and growing strong. She hasn't had any more occurrences of pneumonia...praise God! She has had some nasal and chest congestion with a cough here lately but we're trying to treat it and prevent it from progressing further. She's staying healthy other than that and we were recently able to get the procedures completed with her ENT at UMC and the CT scan completed here at a local hospital. We collected the images and reports and mailed them to Orlando. I spoke with them on Friday and they've gotten the information and will begin reviewing it all. After they look it over they're supposed to contact us with further recommendations. So, we're just waiting and praying for God's leading and timing over it.
On another note, there were some concerns found on her CT scan that relate to her neck area and spinal cord. There's mention of abnormalities and other findings and we don't know what to make of it. Our pediatrician and we agree that it needs further review by a specialist in order to determine how significant it is and what it means. We're hoping and praying for answers and guidance as to what is going on. We don't know much about it other than what we tried to make sense of on the CT report and then what can be found on the internet. Spencer has researched it but I'm just not able to look at it. It helps him to read it all and to "prepare" for what may be going on. I, on the otherhand, get consumed with worry and feeling helpless if I look at all the online information. So, I go into the appointments "flying blind" as Spencer calls it. So, for now we're just waiting on our appointment with the pediatric neurosurgeon, which is scheduled for first part of July.
As we wait for answers and for it to all "fall into place" we're enjoying Selah and the sweet blessing she is. God continues to remind me, just as He gently did while I carried sweet Selah in my womb, He knit her together and knows all about what is going on. I try to cling to that and claim it...oh, but how quickly that slips from my heart and mind...and yet again He calls me to trust in and rest in His promises and truth....
I will update you as we know more and I will post some more pictures soon. Thank you for your continued support of the blog and more importantly Selah and our family! :)

Recently there is a song that God has continued to speak to me, almost daily, and He has been reassuring me of His faithful presence and filling me with hope each time I hear it. I pray it brings you encouragement as well...
Building 429 We Won't Be Shaken
"This world has nothing for me, this life is not my own
I know you go before me and I am not alone
This mountain rises higher, the way seems so unclear
But I know you go with me so I will never fear
I will trust in you
Whatever will come my way
Through fire or pouring rain
We won't be shaken, no we won't be shaken
Whatever tomorrow brings
Together we'll rise and sing
That we won't be shaken, no we won't be shaken
You know my every longing, you've heard my every prayer
You've held me in my weakness because you're always there
So, I stand in full surrender, it's your way and not my own
My mind is set on nothing less than you and you alone
I will not be moved
Whatever will come my way
Through fire or pouring rain
We won't be shaken, no we won't be shaken
Whatever tomorrow brings
Together we'll rise and sing
That we won't be shaken, no we won't be shaken..."

Psalm 62:1-2 "My soul finds rest in God alone; my salvation comes from Him. He alone is my rock and my salvation; He is my fortress, I will never be shaken"