Sunday, January 8, 2017

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....:)

Thursday, August 20, 2015

"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."

Sunday, April 19, 2015

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!;) 

Thursday, April 16, 2015

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!

Sunday, January 18, 2015

Through the Clouds...

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

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

Monday, January 12, 2015

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







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

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

Wednesday, October 15, 2014

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!!