Wednesday, October 15, 2014

What's New...Rolling Into Boston! say I'm overdue on a new post and update would be very much an 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 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 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 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'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!!

Friday, July 11, 2014

Been too long...I know

Our first Mardi Gras parade...she is winding down but she enjoyed 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! :)

Sunday, March 16, 2014


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 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'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'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'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!!!

Sunday, February 16, 2014

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;) 

Wednesday, January 22, 2014 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 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 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!!