Well, to say I'm overdue on a post yet again would be an understatement....yet again!! Nevertheless, hi there! I can't tell you how many times I've wanted to sit down and write a post or give an update and yet time and again I put it off...and keep putting it off. I'm not sure why other than finding the discipline to do it and the initiative to dig deep into the underlying but buried desire to let it all pour out. So, I find myself here again hoping to bring a little insight and to fill you in on this growing little gal.
We are one day short of finishing our Kindergarten curriculum...yay! We didn't follow the typical school schedule but seemed to operate more on a year round one...intermittent breaks throughout the year. We plan to begin our 1st grade curriculum in August. She's done well and I'm thankful Spencer and I have been able to work together this year to complete it!
Selah did have a Craniofacial surgery in March and we were in Seattle a little under a month. It was a helpful surgery and a positive first step in her plan of care. Our focus post surgery has been to stretch and exercise her lower jaw to try to maintain and improve it's mobility. She's been so successful with this and we're so grateful...a lot of tears and hard work have gone into...and prayers1!! We plan to be travelling back to Seattle in the near future for further appointments and CT scans and to hopefully discuss what our next step will be and the timeline for it. She did have about a week long hospital stay post surgery (one day from getting home from Seattle). She was a sick girlie and was treated for bronchitis/pneumonia. Thankfully she's recovered and been feeling well. We do "quarantine," as Spencer calls it. This is where we avoid a crowd or a lot of kiddos, etc in hopes that she doesn't pick anything up. It's not always ideal but it is one way for us to try to be safe rather than sorry...especially prior to appointments or surgery.
On another note, she's growing and showing new interests every day. For the summer she's been taking private music lessons. She was super interested in the Banjo but that didn't work out. We started with learning the Ukulele and I think she's enjoying it. There are some challenges for her due to fine motor and the structure of her wrists and hands but she's not letting that keep her from trying! She's definitely got a love of/interest in music1
And on an even more exciting note, Selah recently asked Jesus to be her friend and to live in her heart...for the first time! We've had Bible as part of our curriculum this year and discussions of salvation and praying have been part of that. In addition to this, what she learns at church, and what we learn in her nightly devotionals, she's had a good understanding of it. She came to me on her own and told me she'd prayed the salvation prayer for the first time and that she is so excited. Her understanding and joy are so genuine and sincere. She's also no longer scared of being Baptized but is excited and ready for it. So, that's something in the works...a creative and cautious way for that to happen! This was such a blessing to my mama heart and an answer to prayers...above and beyond!
So, I'm not sure what else to update on at the moment, ha. We're taking it day by day and trying to be thankful in it all. I won't lie, I'm tired and often battle weariness. Thankfully my Heavenly Father knows me all too well and doesn't give up. I desire to let go of what I'm holding so tightly to...that isn't His best for me. I long to hope in and believe in Him...in all things. I pray this for you as well...until next time :)

Whoa....Has It Been That Long???

Hey!!
Over a year since my last post...that's got to be a record??:( I don't even know where to begin other than letting an update just all spill out in hopes that it makes some sense. If there's even any readers still, ha!?
Selah is now a sassy and energetic five year old...six in April. SO crazy that she's that old!! We began our homeschool curriculum (Kindergarten) in the fall. We're plugging along and I'm so grateful for the opportunity and time we've had together. Some days there's more motivation than others, on her part and mine. Some days I'm full of doubts and feel ill equipped but that's just part of it. We're just trying to take it day by day and it's been an overall positive experience!
As far as health care and surgeries go, we've completely gone in an unexpected direction. Things seemed to fall out of place in Boston. There was a consistent breakdown in communication with our doctor and nurse and it led to us discontinuing any further care there. We began to pause and scratch our heads and look at what was next...discouraged to say the least. Unexpectedly and by what seemed to be by chance, we ended up seeking possible care in Seattle. We've made a few trips there to meet with a team and it seems like such a good fit and a location where we'd like to pursue ongoing care.  
We're planning on beginning Craniofacial surgeries for her instead. We planned to go in December to begin the first part of the surgeries but she came down with pneumonia again and it was postponed. As of now we're looking at rescheduling for March. The goal of this first part of the surgeries would be to hopefully get that lower jaw moving a little...and to allow some of those bottom teeth to come out as well. I will try to go into a little more detail and all a little closer to then.
As of now, any further hand surgeries have been put on hold. She's still not able to really utilize her left thumb for any fine motor activities or opposing but she sure tries hard. We've just let her right hand stay and she does the best she can at adapting. So, we'll just wait and see on that end.
Selah is still just like any other kiddo for the most part and she definitely wants to be. That's what hurts so much sometimes. She's so smart and intuitive and she picks up on when others notice her differences or point them out. Unfortunately it's a routine and heartbreaking occurrence. She's resilient, more than her mama, but my heart aches to know what she's really thinking and feeling in that sweet heart of hers. I just have to try to open my hands and envision God lifting it all up into His hands...His healing and loving hands.
That said though, she's also been blessed with a handful of super accepting and caring and just fabulous friends! They see the beautiful and fun loving Selah and appreciate the girlie she is. I can't tell you how much that means to me...how thankful I am God has placed them in her story.
So, that was a whirlwind of an update I feel like...but I do intend to be back with more. This was way overdue...but until next time....:)

"May It Be As You Have Said"

So, wow, quite a break I've taken from giving an update...sorry! Not the first time and unfortunately probably not the last time, ha. I really didn't intend for this much time to get by...
We've been to Boston and back twice now. Selah had a thumb reconstruction on her same hand, the left hand. The doctor's goal was to reposition the thumb to try to get it into a more favorable position...in hopes that she'll be able to use it more appropriately for fine motor and daily tasks. We went back to Boston to get her cast off and to get fitted for her splint. She's out of both now...except for the splint at night time. We've been doing her OT(Occupational Therapy) locally. In about a week or so, we are to email some video and pictures of her thumb to our Boston doc so he can let us know his recommendations. If he is pleased with her progress then we'll just take a break until the Spring, when we pursue starting the other hand surgery. If he sees that something needs to be worked on though, then we'll be making a trip back up there this fall. So, we'll see.
She is trying to use her thumb. Like last time though, it lacks strength and the ability to really oppose. It's "norm" position is still to hyperextend(practically bend backwards) which isn't ideal. It's hard for me not to wish it were doing better or had turned out differently this time around, but I try to be thankful for what she is trying to do with it. I just long for her to be able to button or zip or use scissors or just other activities that are by no means critical but just part of daily life. She doesn't give up trying and she adapts and uses her feet and other creative ways to try to do what she intends to do!
She's started back to her group therapy twice a week and has a new teacher and new friends. So far that has gone well. She'll also go to a regular preschool class just one time a week. It is in the same program she attended last year but she will have a new teacher. Thankfully the teacher is a friend from church so that makes Selah and I feel good! She is now to where she just jumps right in and it's more me that is hovering around analyzing the situation, lol...but very true.
She's been pretty healthy lately. She's scheduled to have some MRI and CT scans of her head, neck, and vertebrae done before too long. The scans are to just give an updated picture of what's going on with her and how everything is looking. There have still been no decisions or moving forward with jaw surgeries right now. For the time being we're trying to get the hand surgeries taken care of.
On another note, I was reading her devotional with her one night and the story was brief and written so simply but God spoke clearly to me. I've been struggling lately or for a long while now, with letting go and just being content with where we're at and just with how things are. It hurts so much sometime to think about what may or may not lie ahead for Selah and the fact that I can't fix it or don't have the answers. This story though, was about Mary and when the angel of the Lord came to her to tell her she would become pregnant with Jesus. Just as Mary was to begin an unexpected and uncertain journey with this baby to be, I remembered beginning one of hope and yet wonder of what will be with our sweet baby girl. A journey of venturing away from well planned dreams and expectations of how it would all play out into a journey of complete and supernatural surrender...nothing of you, only what the power of the Holy Spirit in you enables.  And so as I then read of Mary's journey into motherhood and watching Jesus grow, I again felt my heart pricked as I totally identified with her for another moment. Here she now has this child she now dearly loves, yet has to remember to let go of, because ultimately he doesn't belong to her. She tries to love and nurture her Jesus as she knows that the future won't be easy and is filled with uncertainty. But despite not knowing what all the future held in any of her journey with Jesus, Mary held to her faith and the fact that she believed God and that was enough. So, as I read of Mary and her courage, it has been my heart's cry as well...to be a woman of genuine faith and belief...willing to say "ok God, let it be as you have said..."
Luke 1:37-38 "For nothing is impossible with God. I am the Lord's servant, Mary answered, May it be to me as you have said."

Into the Depths...What Then?

So, I'm not back with an update at this moment. I'm waiting to hear back from two different specialists and hoping in a couple of days I will know more of our upcoming plans and then can share that with you. In the meantime, prayers for wisdom and discernment for Spencer and I to know what's the best next step for Selah's care are very much appreciated! 

Now on to what's been on my heart lately and what I've been led to share. I feel like I don't really go too "deep" any longer, since I've welcomed our little miss prissy. I'm not sure why that is but I do want to try to obey God's leading when He calls me to share something. Please don't take it as I mean poor me, I've got it so bad...because I don't and that is NOT my intention! :) Moving on, so hear it goes...

I'm not sure about you and your story or what you've experienced but I can speak for myself and say that it seems the older I get, the more disappointments, more misunderstandings, more hurts, and more uncertainties I encounter. It seems like as life happens I have and am quite often finding myself in a circumstance or season of life that leaves me silently (and often out loud) shouting, "what now, what then God?" I'm not sure why but I've had a couple of examples that have persistently come to mind that I will give you..and I hope it makes some sense. I guess it's kind of like role playing of sorts, ha...

You're just a kiddo who desires for your home to be anything but broken and for the parents you have to be just that...adults who don't let their issues and battles overcome the stability and security you so long for...leaving you more vulnerable then you really ever realize. Or as a young adult you start to come back to the Heavenly Father you've strayed so far away from and are viciously presented with heartache that you didn't ever imagine and that is far from the idea that everything was supposed to work out all peachy and smelling like roses. And then, the stink of life and brokenness and hurt just threatens to consume you day after day..and the bitterness and hurt is more than the good in life. Moving on to the loss of dreams and plans and hopes you have for your sweet baby that's on the way and trying with all that is in you to give thanks and to trust and to know and believe and see God's hand on it all...yet it hurts and you want to fix it and make it easy and wonderful and you can't...no matter how hard you try. So, you begin this journey already tired and weary and you keep trying to cling to His promises and to stay close to your Lord and Father and yet you still feel so far away...and fight a fierce battle each day, throughout the day, of insecurity and worry and hopelessness...because it's not the plan you had or this isn't the "best" you had played out and figured out...what then?

Well, my only response to this is what God has consistently, in His mighty grace and sovereign power, reminded me of and that is that when I, and maybe yourself, are left standing there or kneeling there or cradled there in the fetal position, He is there in the depths...He knows and He is there. The then that is to come and even the present moment is all in His loving hands. I believe that and with all that is in me I pray He helps me to keep clinging to that. He is able and He is faithful...

With this I leave you one of the most powerful promises in scripture...at least I believe it is. I pray that as you read the words, maybe out loud or out of an actual living and active Bible, that hope just floods over you. Lastly, this is the notation that my Bible has written to accompany this verse..."God's love is total. It is wide and covers the breadth of our own experience. God's love is long and continues the length of our lives. God's love is deep and it reaches to the depths of discouragement, despair, and even death. You can never be lost to God's love..."

Ephesians 3:16-19 

"I pray that out of His glorious riches He may strengthen you with power through His spirit in your inner being, so that Christ may dwell in you hearts through faith. 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"  

Much love to you...I will be back soon!;) 

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;) 

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"

A Little Deeper...

Hi from us!!
I hope you enjoyed the pictures of Selah on the last post...I hate to say I'm not including any on this one:( but I am going to go a little deeper in what I share than I have in a long while. There are often many times that God leads me to post something and I typically put it off or just don't do it. I blame being tired and busy, which I tend to be, but those are still excuses for me disobeying a divine leading...a prompting that I shouldn't ever ignore. So, with that said, this has been on my heart for a little bit and I'm finally trying to follow through....hope it makes sense?! :)
Over the past few months I've been really trying to take in Selah and just these sweet moments with her. I'm amazed that two years have passed by. I see how big and prissy she's getting and how much of her own little personality she's developing and I just am honored to be able to love her and care for her. There have been more times than not, here lately, that I just look at her bright eyes and her sweet smile and I'm in awe...all I know to say is thank you God. A week or so ago she wasn't wanting to nap and I broke my rule and went in and picked her up and took her to her rocking chair. Yes, I rock my baby but not to get her to sleep...just when it's loving time. Anyway, she typically will fight me if I try to cuddle her but on this day she was so affectionate and loving. She laid her head on my neck, patted my arm, and just let me hold her. I kissed on her and loved on her and soaked it all in...for what seemed to be hours. I sat there loving on her in my arms with tears of a humble and truly grateful spirit streaming down my face...in awe of this little blessing I've been given. I also began to think back to my pregnancy with Selah and her delivery and just our journey as we welcomed her into our lives. I remembered specifically though, my prayer during my pregnancy and my heart cries to be able to love this sweet baby...in God's grace...as long as He would allow...
Well, not long after this I began a new section in my devtional book and it has continued up until now. The reoccuring theme has been on God's faithfulness and His "abiding presence"...He won't ever leave or forsake us and He goes before us. There have been numerous devotions, different in messages but reinforcing the same theme, songs on the radio, and just other things I've read or heard that all continue to reiterate this message of truth and God's promises...I'm going to share some of the scripture and notes that God has continually spoken to me...
Psalm 37:3-5 "Trust in the Lord and do good; dwell(wait) in the land and enjoy safe pasture. Delight yourself in the Lord and He will give you the desires of your heart. Commit your way to the Lord; trust in Him and He will do this: He will make your righteousness shine like the dawn, the justice of your cause like the noonday sun." 
Deuteronomy 31:8 "The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged."
He spoke, "trust in Him and wait patiently for Him to act; do good by living obediently, responsibly, wisely, and in humility; enjoy His provision and abiding presence and be joyful and thankful in all seasons and in all moments...because He goes before me and He is always at work...doing beyond what I can ask or imagine"
So, as God has been speaking to me and has been gracious enough to continue to share this message, I've been reassured of His presence and His preparation. He's "prepping me"with His truths and His promises for whatever does lie ahead; He's working and preparing my heart, mind, and spirit with His unspoken but gentle and faithfully present spirit. And although I'm uncertain as to what He the preparation is for, I do have a peace and a hope that is truly only of Him and His grace.  I tell myself that I am at peace and will continue to be and I pray that with all that is in me that by God's goodness I can cling to that...in faith, in trust, in hope...
As I do try to embrace and appreciate this preparation, I'm enjoying the priveledge of loving sweet Selah and I'm trying to tone down my nastiness and enjoy the love and patience Spencer shares with me. :) I pray that I can just continue to soak it in and just know that God is here working...for His good purposes...that He is with us and that He will always be...
I pray and hope that something you read will resonate with you or that God speaks the truth that He wants you to hear.  I also pray that whatever season you're in right now, that you know and trust in His "abiding presence" and His magnificent love for you! From my heart to yours...He will NOT ever let us go...:)
Thank you for your continued support and prayers, truly!!

Big Girl!

On her school bus where she pushed herself out into the grass and got stuck. She's happy though :)

Styling at church courtesy of our bestie!

Farm Day at her "school" or therapy center, the Children's Center. She actually briefly pet the pig, horse, goat, sheep, and bunny rabbit. She and I've come a long way...petting these unsanitary farm animals, ha :)

Hanging out on the back patio one afternoon blowing bubbles

Sitting on her big girl potty. Still no action yet but we're practicing

In her swimsuit courtesy of our friend Kim and playing with the water toys Grandma brought us

One of my favorites...that is her mama's NASTY look!! This was taken shortly after I tried to paint her toenails. Needless to say, she did not appreciate that attempt!

Last but not least...she's like her mama already. She can't drink but we still encourage her to use her lips and to "drink" and make "kisses" and "taste"  She has what else but a McAlister's cup....my favorite tea!!!

We're Back!!!

Now two years old...big girl and sitting like a little lady!

Mama's big helper with her cooler of food and water...sitting at one of our favorite places...

Mcalister's of course!

  Last but not least...one unhappy girl on her happy birthday :(  on her 2nd Birthday

 

 

 

 

 

 

 

 

Well, I'm ashamed to say that I've taken so long to update a post but it's been eventful, to say the least. I'm just going to try to fill you in and hope it all flows together.
In March we headed to Orlando, Florida for a CT scan and to meet the doctor to discuss possible jaw surgeries, etc. As soon as we got there Selah started running a fever and became congested so we had to cancel the CT scan. It doesn't need to be done with sedation if there's any concerns of sickness, fever, etc. We still met with the doctor and got to see the new hospital. We were impressed on all accounts! The hospital, Nemour's, is clean, in a beautiful location, and had a knowledgeable and friendly staff. The doctor himself was knowledgeable, compassionate, and just had a wonderful bedside manner. He discussed our options and kind of a "big picture" plan and was so positive. He didn't assume that we knew everything already and he just laid it all out and gave us more information than we received from anyone, specific to her jaw surgeries, options, etc. It was such a blessing to meet him and Spencer and I both felt a peace that this is probably the best location for us to receive care and surgeries for Selah. The first step though is to have the CT scan of her facial bones and jaw done and then to have our ENT do a procedure to get some images and information about what all is going on with the anatomy of her nasal and oral cavities and her airway. We planned to just reschedule her CT scan and other procedure at one of our local hospitals once she got to feeling better and we set off on our trip home.
Her congestion and fever had gotten worse over the course of the trip in Florida. On the day we were traveling home she got progressively worse and her breathing became very labored, her respirations were too fast, and she became basically unresponsive. We debated on what to do and what out of state hospital to stop at. We made it to the children's hospital in Mobile and she was admitted for several days. They treated her for pneumonia and a trach infection. She got progressively worse so fast and was a sick little girl. It's such a helpless feeling to see her struggling for breaths and not being able to do anything...other than claim God's mighty hand over her. Faithful prayers were being lifted up from many, which is so humbling, and Selah got to feeling better. We came home after a little bit in the hospital and it never felt so good to be in our "sanitary" environment again, ha.
So, we got home and have been trying to keep Selah healthy. We started back to therapy and started back to church and just eased back into our routine. I also rescheduled her scan and procedures for about a month out, to ensure she had recovered. But, last week she started again with a runny nose, chest congestion, thick and discolored secretions, and a fever. I knew it was back...the pneumonia and trach infection. The doctor, trach culture, and chest xray confirmed it. It never really went away and I guess this is a relapse. She is getting an antibiotic and breathing treatments with meds to inhale through it also. We also have oxygen here that we hook up for her when she needs it. This time we caught it in the earlier stages and thankfully she's been able to be at home to recover. The faithful prayers, yet again, are being answered.
And, the CT scan and ENT procedures, both with sedation, will just have to be put off until she's fully recovered and it's safe to proceed with them. These are both a vital part of the planning of what, when, how, etc. for her surgeries and it does seem like yet another delay. But, I'm at peace with it and do believe God is working. Now I'm not saying I understand it, at all, but I do know He is orchestrating it all. We're getting to enjoy her at home and seeing her grow and develop her own personality and just geeing to love on her...sweet Selah!
I also need to add that during our consult with the FL doctor, he said that it was a miracle that she hadn't been operated on several times already. He meant that it's wonderful she hasn't been because there's not an abundance of scar tissue to work with and that it means there are options for us to consider the best treatment and timeline for her. It was so reassuring to hear this. God used that doctor's words to audibly reassure the unspoken concerns and doubts in my heart...it's all working out according to God's plans and in His timing...the delays, the open and closed doors, the sicknesses, all of it....it's all according to His sovereign plan...
Thanks SO much for sticking with us and this blog! I really will try to be back soon! Post me some comments, just a little harassment, to keep me on my toes and to remind me to do it, ha. Truly, thank you for your continued support! We send big hugs!! 

What's New With Us...

Hi, hope all is well with you?! I know I've been due for an update and it's taken me longer than I intended...surprise??!! :)
Anyway, we've been staying busy here lately. Not anything has changed as far as a decision of whether or not we'll pursue Selah's jaw surgeries in Chicago. We've not contacted them and they've not contacted us. So, it's still left to if and when we're ready then we can let them know, I guess. Also, let me backtrack a little too. Our initial plan was to look into a consult in Chicago and to also look into a consult in Orlando. We had one of our lead physicians from UMMC in Jackson leave and go to be a part of opening a new children's hospital in Orlando. He always provided us with wonderful care and we've got a good working relationship with him. So, we always had getttng a consult there in the back of our mind. We waited though because the hospital didn't open until October and we knew it'd probably be a little chaotic. We went to Chicago in November and then December we celebrated the holidays and battled the flu. :(  So, we decided that at the beginning of this year would be a good time to try to contact Orlando. We did and we're working on getting a consult scheduled...as of now we've got an appointment in March. We plan to go down and to meet the doctors and team, to get an updated CT scan of Selah's jaw, and to dicuss insurance and costs, etc. So, we are looking forward to this consult also. We're just praying that doors continue to open and close as they need to and that we clearly know God's leading. Your continued prayers are truly appreciated also!
On another note, Selah has began attending "school" twice a week for an hour. From the time we came home from the NICU up until September, we've been truly blessed to receive therapy services for Selah in our home. We've been working weekly with her Occupational, Physical, and Speech-Language Pathologist along with a Hearing Impairment "Teacher" and a Special Instructor. These therapist have all been providing these coordinated and amazing services in our home and have become like family. They all provide these early intervention services through the CCCD or Children's Center for Communication and Development. The CCCD is located in Hattiesburg on the Southern Miss campus. This center provides individual home and community-based services but also group and center-based services at the center. The services are provided for infants, toddlers, and preschoolers throughout Mississippi with communication and developmental disabilities. The services offered are life changing and truly a blessing!! Not only that, this center and program rely on  fundraising, grants, etc. are not services we have to pay for out of pocket...I can only imagine the costs if we did have to??!! As Selah has grown and made progress, we've all decided she was ready for the next step...which was her starting to go to the center for therapy rather than receiving services in the home. So, as of last week she began attending two therapy sessions a week at the center. She now is in a group therapy setting and it's a very structured and controlled environment and is full of wonderful resources. Her group consists of her and one other "friend" right now. She's taking some time adjusting but she's coming around. We talk about school and her friends and she smiles and signs it so it's growing on her. Such a big girl!!
Another wonderful cause we're honored to be participating...although not as much as we'd like...is in the 2013 March of Dimes campaign. When we were approached about being involved with this cause and both Spencer and I were unaware of what it is really about. After we began researching though we realized how much of it pertains to us and our story and we're honored to be a part of it this year. The main "mission" is to help prevent prematurity in infants and to to try improve the health of babies. It goes so much deeper than this though! This is the 75th anniversary for March of Dimes and it's a wonderful organization...well worth taking time to check out....please and thank you!
 So, that's what is new with us. I think this post has been a "shout out" of sorts, ha! : )  We continue to truly appreciate all your support and prayers!! Love and hugs from us!!

After her first day of "school." Silly girl!

One morning Stud crawled up in her lap and I closely supervised. He was content and she just gently patted him. She loves both of the "Boys" too!

Hello...Again!!!

Our friends from Chicago...Chrissy and Aiden :)

Selah did NOT like sitting with Santa :(

Big girl!!

Our second trip to the zoo with aunt Pooh and our cousin Meaghan or as I like to lovingly call her...filthy animal :)

Her favorite puzzle

Her favorite kitchen drawer to open and stand at

So excited that our sweet cousin came to visit!!!

Holding my hand and taking a stroll or as we like to call it, "doing the shuffle"

If only I knew what she was thinking...?!

Another pic from our zoo trip

Hi! I know I gave my word on the last post that I would be back soon with an update and well as you can see, that didn't happen...sorry! I believe I have good reason though...we've had the flu and I've been down with it...yucky stuff!!! So, I've not been up to doing much of anything. We're on the mend though and feeling SO much better than what we were! Anyway, I thought I'd try to fill you in on what we've been up to. And, wish you a belated Merry Christmas and Happy New Year, lol!
We've had a few different things going on. I'm just going to list them as they come to mind and hope that it all rings a bell?! We've recently had two night nurses that started coming to sit and watch Selah. They come four nights a week...they each work two nights. It's been a much smoother process than in the past and I can honestly say that I know it's worked out how it's needed to...in God's almighty timing and ways. I'm thankful and it's truly been a blessing thus far! I pray that we continue to just know God's hand at work in this blessing.
We've also recently made a big road trip up to Missouri to see family...yay...and then on to Chicago to meet a physician at a Craniofacial Center there. Through corresponding with a sweet mama of a little boy that shares Selah's syndrome, I got the contact information for this physician. This mama and her sweet boy are both patients of this doctor and she highly recommended his care. Because the syndrome is so rare and it's not often that we've dealt with a doctor that's performed jaw surgeries on these patients, we decided to look into it. Long story short, we got an appointment and made the trip up to meet this doctor. We got to ask some questions and get his recommendations on whether or not to pursue the jaw surgeries there. He basically said that it was worth trying and that he was willing to work with us if we're committed to all it will entail...the distance, length of and number of hospital stays, financial and out of state costs, etc. We left it at us touching base after the first of the year to decide if we'll pursue the start of the jaw surgeries there, with him, or not. Let me remind you that the consults we've received from the more "local" hospitals in our and surrounding states have said they can't and won't perform the surgeries at this point in time. So, we know that this doctor in Chicago has worked some with patients with Nagers Syndrome and that's encouraging. There's just a lot to consider...or at least it's a lot to me...quite overwhelming...
On a lighter note, this doctor had arranged for us to meet this sweet mama and her son by scheduling our appointments on the same day. Sweet mama...Chrissy...and her son...Aiden...live in Chicago and were having a check up on that day. She as well as we were unaware that the physician arranged the meeting and we were both pleasantly surprised!!! It was such a blessing to get to meet them in person and to get to hear their input and to ask questions and just to see their smiling faces!!! It totally made the trip worth it!!!
So, we made it home from the trip and spent Christmas and New Year's here...recovering from the flu...yucky!!! :( We are thankful it wasn't worse though and we're thankful to be on the mend!
Other than that, we've been enjoying sweet Selah and just watching her grow. She's becoming such a big girl! She's using so much sign language and she's so intentional about trying to communicate with it. She's taking steps as long as she's holding one of our hands. It has to be on her terms and timing though or else she will melt down and just sit and refuse to walk...oh, she gets it honest! I've been giving her a choice, "Do you want to walk or do you want up?" and she's responding pretty well to that. She seems to feel a little more in control when given those choices and that helps, ha! She's also exploring more...opening drawers and cabinet doors. On that note, recently I started her bath tub water and let her set right in the doorway of the bathroom while I went to grab her towel...right in the next room. She shut the bath door and pulled out the bottom drawer of the vanity...blocking me from being able to get in to her. I tried to calmly say, "clean up, all done, close the drawer" but it didn't work. I began to reach meltdown mode and screamed for Spencer. Selah couldn't get the drawer in and started crying and could hear the stress in my voice. I kept thinking of the running bath tub water. Spencer ran and got a very large kitchen knife and managed to jimmy the drawer in, through the small crack in the door that we could get through. Needless to say, I rushed in and turned the water off and grabbed her up all the time thanking God for no harm done. I was so thankful he was home and could use his firefighter skills. Had he not been home, there would've been another story...a door to replace, a vanity to replace, most likely plumbing to replace, and last but not least and ER visit because of the stitches that Selah and I would've sustained from me busting in the door!!!
On a serious note though, I truly thank God for yet another "affliction eclipsed by HIS glory"...seems small but it is something I'm thankful for...His presence...
Well, I hope this has been an update that's worth the wait, ha. Thank you for your continued prayers and support...more than you know!!!