Sunday, August 25, 2013

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 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 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' 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!!:) 

Wednesday, June 26, 2013

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! :)

Sunday, June 16, 2013


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"

Thursday, June 13, 2013

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 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 God's 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 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!!

Monday, May 27, 2013

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 favorite tea!!!

Wednesday, April 24, 2013

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 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's all working out according to God's plans and in His timing...the delays, the open and closed doors, the sicknesses, all of'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!! 

Wednesday, February 6, 2013

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 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 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!

Saturday, January 5, 2013


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 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 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!!!