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!!!

Surprise...Finally Back!!!

Such a happy girl!

Her and daddy catching a nap

Her and daddy put this outfit together...even coordinated the bow!

One of my favorite pics :)

Napping after a long day

Baby and Daddy at the Pumpkin Patch

She had a choice of two pumpkins and this is the pumpkin she picked out. She was so proud of her pumpkin!

Thank you for sticking with this blog....we truly appreciate your support!! I'll be back soon with an update...you have my word! :)

Picture Time...Finally!!!

She just finished sitting in her pool and was taking a break and playing with her fire truck. And, no she's not practicing posing for a calendar one day...oh my...is it awful that I even had that thought about my own sweet baby?! :) 

Ok, I first want props for putting her in a tub, ha. Now I know that I have her in a "baby " tub sitting in a real tub but this is when we first started taking real baths...give me some credit! :) 

This was taken in her nursery room at church. She's doing good standing while Mama T gives her a little help. 

This was taken today. She's standing by herself, as long as she has something to hold or prop on...big girl! 

She is trying to put the bubble wand in the bottle all by herself...miss independent!!

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One of my favorites...being silly!!

And, last but not least...she's really been watching how we feed her...getting her food in her syringe and then putting her  syringe to her tube and pushing it in. We talk about it and talk her through it. She's now "assisting" in putting the syringe to her tube and trying to push it in. She's even imitating stirring the syringe around in the food, trying to get it in it.  She won't need my help much longer ;)

Thanks for your continued love and support! Sorry for the delay in posting some pics but I hope it was worth the wait?! :)