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?! :)

A Little Clarification...

Well, don't be shocked that I'm back so soon...wow, I know! :) I read my most recent post and felt the need to clarify just a little. It may or may not be needed but it's something I believe is necessary. Anyway, I did not intend to dismiss or overlook some of the caring and more than willing people in our lives...that are more than  happy to try to give us a helping hand. So, I thought I'd offer a little shout out...of gratitude. I've had a few friends that are fully capable and so willing to help with Selah. They have offered on more than one occasion to spend time with her so that I can get some errands done or get a haircut or go to a doctor's appointment. They've also offered to give Spencer and I a date while they watched miss prissy. It's been more on our end that it's not worked out. We're trying to balance and coordinate all that we have going on...mainly Spencer...with the fire hall, military, and then other odd jobs. One friend in particular has told me, much more than once, that she wants to help when she can but I've yet to work it out with her...Leslie. :) She has been so willing despite all that she is balancing herself...she's a hardworking wife, mama, and student. Leslie and some other sweet friends are here to try to serve us and it's because they love Selah and us I know. I didn't mean to seem to dismiss or overlook that at all! And many others offer support and love in various ways and it's all truly humbling and appreciated!
And I do not mean to fixate on this topic, but it's a challenge, if I'm being honest, to try to find consistent help...even if it's just occasional. Again, there are some I know will try to help if I give them the opportunity. It's something, as I mentioned in my other post, that I've struggled with being very frustrated and defeated over though. There are times where I do feel discouraged because I've got a doctor appointment, etc. and just haven't gotten care for Selah worked out yet. And, I will own up to it and admit that I'm not "letting go" too easily. Yes, like many mamas, I've got a ton of scenarios that go through my head and a ton of things I think of as to why I shouldn't leave Selah with anyone else. Some of them I feel fully justified in, ha! :) It's so hard for me...words cannot express! We were told in the NICU by the staff that cared for Selah and trained us in her care, about all the precautions that need to be taken, the scenarios to "prepare" for, and so forth; needless to say, it's not that easy for me to  just let go and not have concerns. I know that not only do I want to be comfortable with someone but I also want them to be more than comfortable in their ability to take care of Selah and the medical needs she has. This isn't easy and is yet to come about. And I hope it doesn't seem that I want a nanny or anything, ha. And,I truly hope it doesn't seem like I'm complaining...I guess I am though. I just mean it gets frustrating and discouraging at times because we do have to consider the care we need to have for her...even if it's just occasional...and it just involves a little more than the "typical" kiddo care. Yes, she is a typical on the verge of toddler-hood kiddo but she's also got some extra medical needs that require a little bit more knowledge than just changing that diaper and keeping her from sticking spoons in the sockets. :) I'm just praying about it and still asking God to bring forth who He knows is willing, capable, comfortable, and so in love with our sweet girl that it's evident they'll only take the best care of her. And He is teaching me to be aware and open to the different forms of care and rest that He brings forth...they are often not what I expect...but thankfully I'm learning much more than I can ask or imagine. And, He is also trying to teach me to embrace the loving hands that long to serve and love on us...if only we'll receive it...

Thanks for your prayers and support!! Pictures are soon to come! :)

What's That Smell?!

I will explain this picture later in this post...stay tuned... 

OK, so yet again I am way overdue on updating the blog with a post...and yet again I'm sorry! I've put it off for a long while now and honestly have avoided it. I've also had an ongoing "battle" with God about posting what I am going to and have disobeyed Him by delaying sharing what He has prompted me to. We have been busy this summer and I've not made the blog a priority. But more than that, I've had a lot of "battles" going on within me and where I am at in this season in life and I've not felt like sharing, not felt like opening up...not felt like being vulnerable. God has persistently, thankfully, been prompting me to share though. He reminds me again that it isn't me or how I perceive things or what I think is appropriate or not. He reminds me that it's for His glory and His purposes...I pray that through my words it's His truth and spirit that are evident. So, here it goes...I will try to tie in all in together where it makes some sort of sense...
So, as I mentioned we've had a busy summer. We had her fabulous therapists come for the majority of June. We traveled some in June and July and had family in for a lot of the month. We've been good and are blessed to have made the memories we did. Selah is doing so good and for that I am truly thankful!
There seems to be so much lurking underneath the surface of my emotions, mind, spirit...all of me...so much there that I've not realized was there. What's there has been less than pleasant and so discontent. It comes bubbling up and surfaces, often without warning, and it stinks. It results in destructive and hurtful words, a negative attitude, intolerance and impatience, and just outright bitterness. This has been going on for a long while. I would like to blame it all on sleep deprivation because without good rest I am so miserable. But I recently had a conversation with a friend about the season of life she's in and we began to find similarities in where we both are right now.  It seems she, like myself, has found herself so discontent, bitter, frustrated, anxious, overwhelmed, and just consumed with a stench and a stink that comes bubbling and oozing out and it just creates a "smell" all around her and leaves her and others asking, "what is that smell?!" We both found that this is happening in our lives. She also shared that God had recently taught her that He doesn't want this stench to permeate her or her life but instead He wants her to be filled and overflowing with a sweet fragrance...a fragrance of peace, gentleness, kindness, grace, love, and thankfulness...no matter what. God really used this conversation to bring some things to light...these words resonated with me and really got me thinking and praying.
I began to think and pray and God led me to think of and speak out what is it that I'm so discontent about...why am I so unhappy and bringing in such a stink to all the many blessings and gifts I have in my life?! He led me to just be honest with Him about the reasons I am frustrated and to share the disappointments I have...to be honest because He already knows them anyway. I began to think about all that and began to list it out loud and it went like this...
"God, I am so tired, so physically exhausted and I just want to sleep. God, I don't understand why night after night Selah is up through the night and night after night we don't get good rest...despite my prayers...my pleas for sleep and rest. God, how can I rest if her monitor isn't effectively working on her and how can I know she's safe without it. God, I am so angry that I am so irritable and so tired and I just want to feel better, I want to be the mom Selah needs. God, I feel so defeated in my relationship with Spencer and I don't like us being so far apart at times on how to handle what we have going on in our lives. God, I am so discouraged and so mad that Spencer and I don't get time alone and time to go on dates. God, I don't understand how we can maintain our relationship when we don't share time together, just us, and when we don't share common interests. God, why do I keep praying for you to open up doors and bring us a nurse or someone to help us care for Selah only to yet again have the prayers unanswered. God, why am I so...ugh...so unhappy...so absolutely miserable..."
Well, needless to say this was less than pleasant as far as my feelings or emotions at the time. I began to speak these things though, as God brought them forth, and I began to feel a weight being lifted. It's like I began to own up to all that I was so upset about and really didn't even know the extent of how upset I was and how much it was just festering and bubbling inside of me...creating a nasty stench. God answered my cries and my prayer by bringing forth these concerns, these hurts, and these disappointments.  God gently began and is still speaking to me.
God began and is still helping me in guiding me through this season in life. He is teaching me, yet again, to be thankful and to praise Him in all of it...yes, all of it. He is also teaching me, yet again, how to do this. As I do thank Him and think about all the reasons I have to praise Him, His peace and joy gently start flowing in me and filling me up...washing away and cleansing all that stink and stench and replacing it with a fragrance, a sweetness...that is ONLY of my Heavenly Father. As I trust and thank Him in faith, He brings the "rest" and sustainment I need. It may not be the in the form that I would expect or work out but He provides...He brings forth His good works in His good timing and He makes His mighty presence known.
With all that said, I will refer back to the picture at the top of the page. This was taken a few days before Selah's first birthday. I was not only tired and exhausted, but also just frustrated and easily irritated. Spencer and I were not agreeing on what to do for her first birthday...to have a party or not. Now, instead of acting like and adult and having a discussion about it, I began to get NASTY and then I proceeded to throw...not one but three...different handfuls of envelopes, birthday invitations, and a phone book. The papers and book flew up in the air and just landed in a scattered mess on the floor. I got up without saying a word and walked through my mess...leaving it there...and went to brush my teeth and get ready for bed. I need to say that Selah was in bed and did not see this activity!! I come out of our room to find that my mess had been cleaned up and put neatly into piles on the couch where I was previously sitting. Spencer nor I said a word. I sat down by the piles and looked at my phone to check the time. Instead of looking at my screen saver of Selah and Spencer, I now see a picture of my mess. I looked up at Spencer and said, "you did not?!" He began to laugh and explained that he may have cleaned up my mess...that I made during my tantrum...but that he wasn't going to let me forget it. He decided to take a picture of the mess before cleaning it up and to save it as my new screen saver on my phone. I'm ashamed to say I called him a not so nice name but then laughed. I decided to keep that picture as my screen saver and it's still there today. I saved it in hopes that as I look at it many times throughout the day, I'll remember that it's not worth it. The angry words, the frustrated and negative attitude, the discontentment, and the pure disobedience and disregard for the life and blessings God has bestowed on us is not worth it...it's destructive, defeating, and not of God. I'd like to say that I always remember and apply this but that would be a fib. I struggle SO much with this SO often throughout each day. I often feel like there is so little progress I make...only steps backwards, away from the direction God is leading. Here recently God has gotten hold of me and is trying...thankfully without giving up...to refine me and to grow me in to His image and His character. He reminds me to persevere with all I have and to hope and to just be thankful for all that He has allowed me to enjoy in my life and in this season of our lives.
Now, I also want to refer back to why I avoided this post. It's such a vulnerable feeling knowing that I'm putting out there what seems to be "private." I also feel like I am complaining and really just being whiny and that is not my intention at all! I know many parents are tired and I know there are some of my friends who would give anything to be up through the night with a baby...with their baby. I don't want to seem like I'm ungrateful by any means. I'm truly humbled and honored that God is allowing me to love Selah and to be her mom. I'm thankful that Spencer and I are partners in this together too. I am human though and there are times where all that I wish were different or all that isn't how I'd like it to be just gets to be too much. I get bogged down by it and it threatens and it often does steal the joy, the peace, the hope, and the love from me and all that surrounds me. I've been trying to pray against this and to claim God's armor over me and us. I pray also that it's not a stench or just negative and nasty stink that I bring but instead a fragrance of blessing and grace that is so evident that it can't help but be noticed that it's nothing of me but only of God...of His goodness, of His sweet presence...
God reminds me though that through our willingness He can work. So, I pray that you see Him in this and that maybe you can relate and takesomething positive from it. And, who am I kidding, since when have I ever been modest??? :)

Habakkuk 3: 18-19
"Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my savior. The sovereign Lord is my strength; He makes my feet like the feet of a deer, He enables me to go on the heights."
This scripture has been used by God at several different times and different seasons in my life. Here recently He led me to it again and spoke through it. He taught me that although it isn't all ideal or how I'd like it, there are blessings to hope for...blessings He will bring forth...blessings beyond what I can ask or imagine. He also spoke to me a gentle reminder to be joyful in the midst of all that I have to praise Him for as well as all that I don't consider a praise. As I do this, my focus is shifted to Him and His goodness and my spirit is lightened...the "weight" of all that stuff that doesn't matter is lifted. He is sovereign and He reminds me He has "got this"... 

Much love to you!!!

Hello...Stranger!

Okay, I don't know what else to say other than...guess who...no, not some stranger...it's me! I'm sorry for the delay...it's been a long time...too long! I don't know what to say...I can offer excuses and honestly say I've just not found the time or made the effort to log on and make posts. But here I am with an update and some pictures...yay!
We've been doing well. Spence has been gone for a few weeks for military training but he recently made it back safely. Selah and I had family come visit and enjoyed that. She is staying healthy and is growing so much. She has started standing/bearing weight on her feet a lot more...still with some assistance. She is also now not walking but running when you put her in her walker. As of yesterday, she declared it "baby proofing" time by not once but twice, trying to stick something in the outlet. She is teething at the moment so she's more irritable than usual but nothing Tylenol can't help :). She is also starting to really try to use some signs (sign language) we use routinely...not without a lot of praise to accompany her efforts ;). And, I'm sure I could go on but I'm tired and my mind is drawing a blank. On that note, she's not resting well at night or during the day...more often than not. This is something that has been going on for a long while now. I pray for rest for her and also for us and sometimes it comes and sometimes it doesn't. So, all that to say, I'm really winding down for the night and my mind is not very "fresh." Hoping the pictures will make up for that :)
Before I share the pics I want to say thank you so much more than you know for your continued prayers and support. I'm truly humbled and honored that I'm able to share in these moments with Selah...and with Spencer. I'm also thankful to have the opportunity to share with you! I will do my best to post sooner rather than later this time....

15 months old now!!

She's tolerating standing so much better now...even smiling while doing it :)

One of my favorites...she really likes riding in her wagon. We rode down to the water and half way back up
to the house Stud gave out so he got to ride the rest of the way back with Selah

This is Selah on the Fourth of July last year...2011...wow! I came across this picture and it
took my breath...I'm humbled and in awe of how far God has brought this sweet baby girl...

We truly appreciate you...thank you!

Road Trips

Hi, hope all is well with you?! I know I'm delayed in giving you an update...sorry. Selah's procedure went so smoothly and we were in an out that morning. The doctor said it was so weird because he got no resistance when he put the bigger trach in. Spencer and I tried at home and at our visit with him and we all felt the resistance and the bigger trach not going in. So, when he said it went no problem we all just laughed and looked at each other. The doctor also said her airway and stoma looked good...so relieved. I know it's an answered prayer and I'm so thankful! Thank you to all you faithful prayer warriors for lifting this need up...God answered...

On another note, we've been able to take two road trips so far this summer. We went for the day to New Orleans (NOLA) with some of my family and then we went all the way to Memphis for a wedding. Both trips were fun...a little tiring but enjoyable. I'm thankful to report that our trip to Memphis was uneventful...meaning this in a good way...and we enjoyed it and made it home safely. Our day trip to NOLA was fun and had a few little adventures that made it memorable.

These are some beautiful gals!!

They stood by the sign at the aquarium that says, "Closed on Monday." All but Meg have their "sad" faces on...well Spencer looks like he may be giving a little smirk :)

Had to post because such a good pic!

My family came into town from Alabama and we planned to go down to NOLA for a day and to see the city and most importantly to go to the aquarium...knew Selah would enjoy it. I assumed that they would be open and ready for our arrival. The Sunday night before we went I checked online to find out their hours, prices, etc. I found out though that they were closed on Mondays...say what??? My family partly planned their trip around going to NOLA and the aquarium. Only because I didn't check on it earlier...like I told them I would...were our "dreams" squashed, lol. We were all disappointed but had to laugh about it. We came to the conclusion that NOLA is apparently shut down on Mondays...needs to recover from the weekend...only meant in a nice way. :) We all decided, that since my cousin hadn't ever been to NOLA and we promised we'd take her, that we'd still make the trip down. We went for the day and had a good time. The weather was pretty nice...not too hot. We enjoyed walking around and just taking it all in. We got to sample some good NOLA food and see some of the local wildlife...big rats, ha. We also played a guessing game as we walked throughout the city...my uncle and I would step over puddles or streams of unidentified liquid and he'd say, "I wonder what that is?" I'd reply, "Not sure but we probably don't want to know!"  I must lastly say that I'm so ashamed to admit that I was the ONLY person pushing a baby stroller down Bourbon Street...at a very fast pace, might I add. Spencer was holding Selah and we'd approach a less than baby appropriate poster or business and both just quicken our step. We wanted my cousin to say she's been to Bourbon Street...even though it's much different in the middle of the afternoon than during the night hours. I had to laugh though as we were fastly walking with Selah and baby carriage..it's a memory! We both agreed that it's not exactly "baby friendly." Anyway, I say all this not to knock the city...at all...but if you've ever been you know that it's a "fun" city where lots of people come to have all different kinds of fun...probably different fun than when you're on a family trip or have a sweet baby on your hip...ha that rhymes!  :) We really did enjoy our day trip though and even more our sweet family coming to see us!!

Thanks again for your continued prayers and support!!

More Videos

This is Selah "brushing" her hair. We had just finished bath time and I was getting ready to brush her hair. I talk to her about when it's time to brush it and show her the brush. At first she'd cry when it was brushing time but she began to reach for the brush so I gave it to her and guided her hand to her head. She taps on her head more than using brush strokes but she's trying. I tell her to brush the other side and point and she'll switch hands and "brush" that hair. She, of course, enjoys the praise and knows she's doing something good. I realized that if I only show her things then it doesn't take long and she catches on. I'm bragging i know...can't help myself :) Again, overlook my annoying commentary or chatter...just comes along as part of the videos, lol!

This is just another video of her "talking" to me. Thankfully she has been tolerating her speaking valve pretty well. ;)

Thanks for your continued support and prayers! Love to you!!

Update

Hi! I've been meaning to post an update and have let too much time get by. We met with the craniofacial team at UMC to discuss the updated CT images and their recommendations, etc. for Selah's jaw surgery. Basically they told us that Selah's lower jaw is so severely recessed and so there's so little of it there that a jaw distraction isn't an option...unless it's an absolute last resort. They want to monitor her for the next several years and see if there's any lower jaw growth. We're not supposed to see them again until next year when they want another CT scan done. They also talked like a rib graft procedure is more appropriate for her...rather than a jaw distraction. So, we're not sure what's best or what to do with the information. We are definitely going to look into other opinions and consults at other locations but we're just not sure where that is yet. We are praying we know God's leading each step of the way.
We also saw her ENT and he said it's time to change her trach to a bigger size. She currently has a 3.0 trach and he wants her to move to a 3.5 size. We change the trach (3.0) each week at home(so it's a clean one each week)and it's something we're more comfortable with. This week we tried to put in the bigger size trach (3.5) and it did not go smoothly though. We tried it here at home and it wouldn't go in. We called our ENT's office and he worked us in on Thursday so he could change it for us. He tried and also couldn't get the bigger trach in. He was putting a lot of pressure on it as he was trying to put it in and it wouldn't go. He looked concerned and said that he's not ever encountered a trach not going in like this. He said, because her current trach size is still ok, it's not an immediate issue. As she keeps growing though it will become more of a concern because she will need bigger trachs as she grows. He's not sure what is going on in her airway, etc. that would be causing the resistance and not allowing the trach to go in. He is going to have her come to the operating room and do a Bronchoscopy...spelling??..procedure to look in her airway and see if he can figure out what's up. It should be an outpatient procedure and hopefully not much to it. It will depend on what he finds out though. She will have to be under sedation/anesthesia too. The procedure is scheduled for the end of the month. So, we're trying to be hopeful that it's not anything to be too concerned about, but it is still hard at moments to not worry. I just want my sweet girl to be okay...only God knows my deepest heart's desires...
We truly appreciate your continued prayers...thank you!