A Wait And See Kind Of Thing…

“A wait and see kind of thing…”

I would be a one rich gal if I had a dollar for every time I have heard this statement over the past 22 months.

In case you need a quick refresher.. Here is where we last left off…

http://www.gofundme.com/kvkp70

That was 9 weeks ago. In these last 9 weeks we have seen 8 doctors (that i can recall off the top of my head, I may be leaving some out) we’ve been to 3 clinics and had many 2nd and 3rd opinions. I feel like we are to a point now where I can better explain where we are and where we are going. So, without dragging on every detail (there are a lot of them) I am going to do my best to catch you up.

In a nutshell this should sum up my sweet Dixie.

Dixie has been diagnosed with an “unnamed” neurological (brain) disorder. We know that this neurological disorder is central not peripheral. This means it is stemming in the Central Nervous System. We have been told if you have a neurological disorder that this is the system you want it to be in. Plus side to having an “unnamed neurological disorder” is this means she does not have some horrible brain disease or disorder (like one already out there and named) Downside.. We don’t know what this disorder will look like in the future (a wait and see kind of thing <— see.. There it is). So, what does this neurological disorder mean for us? Well, right now it is affecting Dixie's muscles. If you were to see her chart it would say something like this.. Neurological disorder stemming in the central nervous system causing muscular weakness. The specific issues we are dealing with are vocal cord paresis (reason why she aspirates and has to be fed through a feeding tube), it is currently affecting the muscles in her eyes as well (reason for glasses), and it is also affecting her legs, specifically "left side weakness" (reason for extensive physical therapy and orthotics in her shoes). Secondary affects to the main problem are that her lungs are slowly being damaged (due to her vocal folds being weak and providing little to no protection to the trachea and lungs). We saw pulmonary 2 weeks ago and were relieved to find out (after an X-ray) that even with the severity of her aspiration that her lungs are appearing to fight this thing very well. There is some inflammation so we have started an inhaler twice a day to try to keep the inflammation at bay. The word "tracheotomy" has been thrown around multiple times but we aren't there yet (and may never be) and for that I am thankful. It will be a wait and see kind of thing (there we go again). Obviously our main concern while we "wait and see" is organ protection and at this moment in time we feel like we have everything under control with the measures we are able to take to keep her safe on a daily basis. So, there's that. We also still have a a diagnosis of an "unnamed" genetic disorder. Her chromosome test came back normal but we have every reason to believe that there is a mutation in one of the "normal" chromosomes somewhere. At this point there is no reason for us to go poking and prodding for a name for her genetic disorder because we are 99% sure it would only be that.. A name; and not change our course of action. We also still have the diagnosis of Raynaud's disease or phenomenon and severe dysphagia.

So, what does the future look like for her (and us)??? Well…. It's a wait and see kind of thing. Above everything else these brilliant doctors have told me, this has been the hardest statement for me. I have been so frustrated, sad, mad, confused and every other emotion that goes in between. Then, one day it hit me like a ton of bricks. Do you know what tomorrow holds for you? Or is it a "wait and see kind of thing"?? If I were a betting woman I would say we all live every day not knowing what tomorrow may hold. In my times of frustration, sadness, anger and confusion I have to remember that even though we could have been given some big prognosis or course of action, life still happens and there is only ONE person who knows what the future holds for Dixie (and it isn't someone wearing a white jacket.)

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Now, what will we do while we “wait and see”?! Good question.. Unfortunately Dixie is in a league of her own. Meaning, our team of doctors don’t have any other patients with these diagnosis’. All we can do is follow up follow up follow up. We are being watched VERY closely. We see some kind of doctor (ENT, cardiology, pulmonary, neurology, genetics) once a month. There are tests and procedures put in place to see if we are getting better or worse. So far, so good. There are decisions for Will and I to make along the way as well.. Dixie has and will continue to receive a good amount of radiation during these tests and it is up to will and I to weigh risk vs. reward on the timing of them etc. No one, even the doctors, really know what the effects of the radiation received will look like on grown up Dixie. But it is also the only way for us to judge her progress. Double edge sword. We will have the GTube (feeding tube) for as long as the eye can see right now. I did my math the other day and If everything went perfect it could be until at least 8-10 years of age. So I’m calling that “as far as the eye can see”. We will also continue in therapy (we are currently 4 days a week).

Obviously our prayer is for complete healing. And now that we know there are no medical procedures to “fix” our baby, I don’t think praying for complete healing is that far fetched. It’s a “wait and see kind of thing” remember. Crazier things have happened.

On another note that I don’t think I have touched on.. Even though Dixie has a brain and genetic disorder, somehow by the grace of God she is cognitively NORMAL. This one, really throws the doctors for a loop. But, we just smile! We’ve never had any doubt in our mind that she could defy the odds. She really is, one of a kind.

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So, how has life changed for us as parents or a family with a “special needs” child. I feel like EVERYTHING has changed yet things remain the same in so many ways. Our life is VERY scheduled… It’s like having a never ending newborn as far as feeding is concerned. We live life in 4 hour increments.

People stare… A lot. I pray that we teach Dixie and others that we are not defined by our differences instead we celebrate them. I don’t mind talking about our story. Just ask me. I’m not fragile. Protective, but not fragile. I don’t think any special needs mom is fragile. So talk to me, ask me about it.. You never know I may be needing to talk about it
too.

Sometimes I feel very alone. Not in my home, home is a safe place.. Believe it or not the hospital and therapy is a safe place too. But in a world surrounded by “typical” children with “typical” parents that have “typical” problems, it can often get lonely. If only my biggest issue were goldfish vs. bunnies. However, I have some pretty awesome friends. I have been smothered in love by a group of amazing women that make me feel “typical” in every sense of the word. They embrace us, our schedule and our bag of medical supplies. They help distract while I feed in the most laughable places, they show up, they help with the boys and they never make me or Dixie feel like a burden and for this I am VERY thankful and humbled and blessed.

I’m tired. We have to watch Dixie like a hawk. I bet you never realized how easy it is for a toddler to access every open or unopened drink in the room in 2.5 seconds. Whew. Exhausting. With every cough we hear at night we jump straight up to make sure she isn’t choking. We try not to let fear overcome us while also being realistic and safe. We are tired, not sleepy…tired.

I could go on and on.. I found this article written by a special needs mother and if I were to change the “he’s” to “she’s” then it would be like she took the words right out of my mouth. I feel all of these things daily..

http://m.huffpost.com/us/entry/1314348?ref=fb&src=sp&comm_ref=false

But, At the end of the day, my life and my problems are no bigger than yours. It’s all relative really.. We are all just doing the best we can in a world full of unknowns. I have SO much to be thankful for and I honestly can’t imagine what my life would be like any other way. I am the mother to an AMAZING little girl. Her strength and resilience at a mere almost 2 years old is inspiring. Her brothers, well, they are pretty awesome too. They are kind and gentle and patient. They are growing up in a circumstance beyond their control and yet they, like Dixie, amaze me every day. And that husband of mine, he isn’t to be left out. There is a reason God brought us together and this parenting journey we are on is one of them. He is the yin to my yang. He thinks of questions I don’t, he worries about things that I don’t and vice versa. He listens and he prays. God has given us one heck of a story to tell, I may never understand why this path was chosen for us. Though it is dark and confusing at times, I have honestly never been happier in my life. Our home is filled with love and we learn something every single day. That whole “don’t judge a book by its cover” saying has never felt more close to home. We are (or try to be) a little softer, kinder and more aware as we face this “typical” world together.

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And you, my friends…. I honestly have no words. We have been shown so much grace throughout this past year. Each and every one of you reading this has surprised me beyond anything words could ever express. I will never be able to show enough gratitude. If anyone knows me you know I’m often burning the candle at both ends. I’m HORRIBLE at Thank You notes (it’s not something I’m proud of). But I hope if you didn’t “hear” one word of this update I hope that you “hear” this…
I see you. I feel you. I hear you. I am thankful
for you. I appreciate you and I love you. We know now this journey will be long and I am
grateful that you care.

Soooo… hopefully I was able to clarify a few unknowns for you, or at least fill in some
missing pieces. As always we hope that you will continue to send a little prayer up for us every now and then. We need them, we feel them.

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XOXO,
Paige

You can donate to Dixie’s Medical Fund here.

P.S. Just like marriage and parenthood, unfortunately “special needs parenting” doesn’t come with a handbook. I have been so lucky to have people cross our paths with advice and knowledge. If you happen to be one of those people with any advice or resources that we should be utilizing etc.. please shoot me an email (paigecparker@gmail.com) There is SO much out there that I am just now learning or unaware of.

One Day At A Time

You can donate to Dixie’s Medical Fund here.

One Day At A Time

Matthew 6:34 – therefore, do not worry about tomorrow, for tomorrow will worry about itself. each day has enough trouble of its own.

How do you do it? If I could count how many times people ask me this question I would be one rich woman. 🙂 First of all, I (we) don’t have much of a choice, we just do it. But, my politically correct answer to this question is…

One.  Day.  At.  A.  Time.

Honestly, some days it feels like we are just living one moment at a time. Our lives move in 4 hour increments from one feed to the next with a thousand other things thrown in between. I haven’t purposely been absent in updating (well, maybe I have a little bit). I honestly just haven’t known what to say. I have felt that my frustrations would outweigh my information, so, saying nothing has been the easiest for me over the last 8 weeks.

Let me bring you up to speed…

Dixie’s GTube placement surgery went great! I know I have said it before but this little girl is amazing. She is resilient and she is strong. She is a pillar of strength that brings so much joy to our life every single day. She is not defined by her differences and she embraces every obstacle with a smile.

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Will and I were nervous about “living with a tubie” as the message board world calls it. It was/continues to be  a whole new world for not only Dixie, Me and Will but everyone in our everyday life.  I still feel like there is so much I do not know and continue to learn but overall we are very comfortable and extremely happy with the gtube and the peace of mind it now gives us. Dixie seems to be responding well to her feeds. It continues to be trial and error and we were dismayed to learn that after 6 weeks with her tube she had yet to gain any weight. Dixie is extremely hypersensitive and upping her feeds the slightest  bit has been difficult. We are now relying on 75% of her daily nutrition through the gtube. In case you need a refresher Dixie failed her last swallow study and she cannot have ANYTHING thinner than the consistency of pudding by mouth.  So, yes, she can still have solid food by mouth. However, she does not like to eat. She is highly sensitive to tastes and textures and this is something we continue to work on.  We continue to do 5 therapies a week and her progress overall is remarkable. If you have had the chance to see her in the last 8 weeks then I’m sure she has raised her shirt and introduced you to “GG”  (that’s what she calls her gtube) bless her, girl has no shame. 🙂 You have seen her walking and talking  and she “appears” to be a “typical” 20 month old.

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Those last 8 words…   “appears” to be a “typical” 20 month old … are where the frustrations start to outweigh the information. However, I am going to do my best to inform and catch you up to the whole reason I am writing this update.  Dixie appears to be a typical 20 month old…. But, Dixie is not. Dixie is still aspirating, Dixie still has severe dysphasia and Dixie still relies on a gtube for nutrition. The last we were told 8 weeks ago is that 1. Dixie has an unnamed genetic disorder and 2. She could have the gtube for the rest of her life that only time would tell.   My last post I shared that I was trying to “Be Still.” and, I was. Kind of.  I’m still working on that part. So, here is my train of thought.. I can do 1 of 2 things… Number 1) I can “Be Still” I can accept that my child has said unnamed genetic disorder and may be on a gtube for the rest of her life and continue therapy and go about our lives the best that we know how, one day at a time. Or number 2) I can search for an answer.

Can you guess which one I chose??  After lots and lots of prayer and still feeling very uneasy about the “only time will tell” scenario, a fire lit under me. I am Dixie’s advocate and I will not sleep at night until I know every possible box has been checked in our search for answers and right now I know for a fact that every box has not been checked.

So, long story short… after talking with COUNTLESS doctors and therapists we were told something that brought back a small ray of hope.

“If she is developing cognitively and physically, I have no reason to believe that it isn’t anatomical”

What does that mean? That means we have reason to believe that there could be a structural abnormality causing Dixie’s problems. Annnnndddddd….. if it is anatomical/structural that can be FIXED.  So, what’s next and why am I writing all of this anyway… after seeing 2 different ENT’s (our regular ENT whom we adore and another “cleft palate specialist” ENT that we were referred to) we were referred on to ANOTHER ENT who is supposedly the best in Memphis. After an extensive office visit with him that included him scoping her in office, him letting me look into the scope and drawing me pictures and diagrams explaining what he saw and what he was showing me. This visit involved lots of questions (I carry around a 2” binder FULL of Dixie’s medical info), this visit involved tears and shared frustrations.

All of this to be said that next Wednesday, April 8th, Dixie will go into the OR at LeBonheur for a Bronchoscopy and Laryngoscopy. {Bronchoscopy is an endoscopic technique of visualizing the inside of the airways for diagnostic and therapeutic purposes. An instrument (bronchoscope) is inserted into the airways, usually through the nose or mouth, or occasionally through a tracheostomy. Laryngoscopy is an examination that looks at the back of your throat, your voice box (larynx) and vocal cords with a scope (laryngoscope).} In Layman’s terms this is a procedure that can tell us if there is a structural abnormality or fix causing (so we hope) Dixie’s many problems. The doctor put it to us this way “The worst thing that can happen is that we find nothing”. Did you hear that? My take away was to pray that there be something wrong with my child. Do you know how wrong it feels to pray that prayer?? Yet, that is why I have come here, to ask you to join me in praying that we find SOMETHING next Wednesday. While we don’t “need” an answer to have a long and fulfilled life with our sweet Dixie, we are longing for answers. We are tired. We want normalcy.

Now, I’m about 50/50 on that whole optimist/realist scale. Once again, I’m working on it ;). Do I personally believe they are going to find something next week? Not really. It just seems too good to be true. We have been on this journey now for 18 LONG months and to think that an answer could be near just seems unreal. I will always have hope. I will lie out in the floor of LeBonheur and cry tears of joy if something is found. But, I have to prepare my heart and remind myself that this is a box. This is a box that needs to be checked. And when if nothing is found there is another box under this one. Our options are not exhausted yet and until that day I will ALWAYS have hope.

What I need from you:

I need you to first and foremost pray for my sweet Dixie. Regardless of answers being found (or not), Dixie is undergoing anesthesia for the 5th time in 18 months. That’s 5 times more than most people are put to sleep in a lifetime.  That, in itself makes this mama very nervous.

Please pray for the Doctors, Nurses and other medical staff that will be caring for our girl.

I need you to pray for Me (and Will). Please pray that our minds not wander our faith not be weakened.

Please continue to pray for our boys (Hayden and Kash). Hayden particularly carries the weight of the world on his shoulders. Please continue to keep them in your prayers as they are on this journey side by side with us and please pray that we find the right words to say to the million little questions they ask us.

Lastly, and I know this is a hard one. I have been praying this prayer for 2 weeks now and it never comes out easy. Please pray that they find something structurally abnormal next Wednesday.  We WANT/NEED something to be able to fix. We feel like we are living in limbo in so many aspects of our life right now and having anything to fix would be 10 steps forward.  If you find those words hard to say then I ask that you please just pray for a “successful procedure”.  

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I hope that I was able to give you some “information”. I hope that my frustrations were shown few. There are so many things I didn’t touch on but no need to bore you with “logistics”. Please just know that Dixie is GREAT.  Dixie is unphased and quite frankly I think she thinks everyone has a GG. We feel your prayers, we appreciate the kind words. I get the messages that you send my way either through social media, text or through friends and family. I’ve said it before but even in our silence we are still here, we are still searching for answers and we are still doing it, living this rollercoaster of a ride

One. Day. At. A. Time.

XOXO,

Paige

You can donate to Dixie’s Medical Fund here.

P.S.

On another note… We were able to go on vacation a few weeks ago. We had one whole week of no doctors, no therapists, no tests. It was one of the best weeks I’ve had in a LONG time. We felt “normal” we were able to breathe a little easier and it was so wonderful. Here are some pics of my  “appears” to be a “typical” 20 month old doing typical 20 month old things 🙂

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“You Love Her”

I sat face to face with the Geneticist last Wednesday. He was our last chance for the “big answer”. After he gave us his spill I took a deep breath and with every ounce of hope I had left I said “so, what do we do?” He looks at Dixie then he looks at us and with every ounce of sincerity he had he says “you love her”.

Wow.

Let me back up…. Obviously I’ve been absent for a while. I’ve had every intention of writing and catching everyone up but in all honesty I haven’t even known where to start. I’ll summarize as best I can.

On September 11, 2014 Dixie had surgery at Le Bonheur Children’s Hospital to repair her Submucous Cleft Palate. You can read more about that in mY previous posts. The surgery was very successful and we had hoped this would be the beginning of the end of the her swallowing issues (dysphagia). We started a long 3 months of “nutrition and development” Dixie started and is still in therapy 5 days a week. At 15 months she was still not walking and developing like we had hoped. We noticed that every time we encouraged walking, her feet (and hands) would turn shades of purple/blue and sometimes very white. We were then referred to a Cardiologist that on December 5, 2014 discovered a small hole in the heart as well as a diagnosis of Raynaud’s Disease or Raynaud’sPhenomenon (Raynaud’s disease causes some areas of your body — such as your fingers and toes — to feel numb and cold in response to cold temperatures or stress. In Raynaud’s disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas (vasospasm).) Because Raynaud’s is rare in toddlers we were told that it may be blanketed under another disease and were scheduled at Vanderbilt in February 2015 to explore it more. Thankfully, after the Raynaud’s diagnosis and learning what measures we could take to ensure Dixie was comfortable and prevent flare ups Dixie started excelling in her therapies over these past few weeks (January 2015).

Now, back up to one week ago.

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Sooooo… after a successful surgery, we anxiously awaited results from all of the testing that was performed. I found myself praying that they find something. I prayed that they find something wrong with my child.. that is what I like to think became desperation. Pleaing to God to give me an answer. Why has this become so hard? Doctor after doctor came in. Bloodwork, normal. Urine analysis, normal. MRI, normal. Skeletal survey, abnormal. Did you hear that?? They found something abnormal. I became hopeful again. Were we finally going to get an answer as to why my cognitively normal child can’t swallow like everyone else? The Doctor explained to us that we were now placed in Genetics hands. That the Geneticist could better describe all of the findings to us and that he would be around soon.

If you’ve ever been in a hospital for any amount of time you probably know that doctors don’t usually sit down on the couch with you. They come in, with their entourage, do their business, say their thing and they are on their way. During our stay in the hospital we had gotten close with different members of the medical staff. They knew we were desperate for answers. Our Geneticist in particular knew he was the last one to see us, he held the only test that came back “abnormal” and he was our last box that we hadn’t marked off. He game in, with his entourage and he sat. He joined us on the couch, well Will on the couch, I was sitting directly across from him in a chair. He looked at us and he gave it to us straight. This is what we know:

Dixie has what they call a “Multifactorial Abnormality” causing a “Midline Defect” in layman’s terms it was explained to us as the way my genes and Will’s genes came together to form an XX Chromosome (a girl) then caused a defect in the midline every case is very specific and in Dixie’s case it is shown through these factors — wide set eyes, low set ears, cleft palate, dysphagia, a sacral dimple, an immature bone age, weakness on one side and a developmental delay. Some of these things I just listed will cause no issue long term (her features), Some can be “fixed” either surgically or through extensive therapy (her palate and her delay) and some (her swallowing, dysphagia) we still have no answer or form of treatment except that she now has a GTube making it safe for her to take in liquids directly into her stomach.

Now.. back to where I started:

I sat face to face with the Geneticist last Wednesday. He was our last chance for the “big answer”. After he gave us his spill I took a deep breath and with every ounce of hope I had left I said “so, what do we do?” He looks at Dixie then he looks at us and with every ounce of sincerity he had he says “you love her”.

Wow.

For 18 months I feel like I have been desperately searching for answers and for a way to “fix” my baby. I’m her mother, we see some of the best specialists in Memphis and no one can “fix” her. I have been mad, sad, angry, hopeful and heartbroken many many times. And I am not saying I won’t feel all of those emotions for many many years. Hearing those words “you love her” , it was like the “answer” hit me on the head at that very moment. Here is what we know: we know that every single test they ran had they come back positive it would have meant a horrible disease or disorder. I praise God every day that that wasn’t our case. My child is healthy and happy she is cognitively just like every other 18 month old out there. Is she behind in her milestones, yes. Do I believe she will catch up? Absolutely. We have not only some of the kindest therapists I’ve ever met, they also know their stuff and have made huge strides with Dixie these last 8 months. There are days I honestly couldn’t make it through without them and I am so thankful they have been placed as part of our Journey. As far as the swallowing is concerned we have been told she may have a feeding tube forever or that she could “grow” out of it. Time is the only thing that will tell what the future holds regarding her feeding. There is no “fixing” it. We can believe in miracles, we can believe in therapy and we can believe that this little girl is the strongest little thing I’ve ever met. Whether she has this feeding tube for 2 years or 20 years we won’t know until we know. This whole “be still” thing has been very hard for me. My mind wanders and my heart hurts. Are people going to stare at us when we feed her in public? Will my child never experience a juice box during class parties? Will Kids make fun of her because she drinks differently than them? Will they shy away from her because she has a tube in her stomach? Will she ever get to experience a glass of wine with her girlfriends? Will my boys feel like I showed them adequate attention when everything is centered around their sister? Will they resent us for all of this? I feel like a crazy person as much as I bounce back and forth from feeling so incredibly blessed that a gtube is the most of our worries right now to feeling sad and mad that a gtube is the most of our worries right now.Right now we are living in 3-4 hour increments between feedings, we are still trying to get the hang of things and we spend a lot of our days arguing with the insurance company or dealing with the medical supply company. I am now considered a parent to a child with “Special Needs”. I have an IV pole in my living room and I’m not sure where to store all of the “supplies”. I know that this will all be second nature to us soon and all of these worries will seem so silly. I pray that I can “be still”. I pray that my mind stops wandering and I “just love her”. I pray that YOU pray for us as we continue to transition into this new normal. I continue to be amazed every single day at the thoughtfulness and generosity that our family, friends, church, work and strangers have shown us. For now, we have put off our Vanderbilt trip that was scheduled for this week. We feel that Dixie has been through enough over the past week, we are all exhausted, she needs time to heal physically, we all need time to heal emotionally and we don’t expect any different answers from Vandy. God’s got this. I just know it. There is a reason that he chose us to be Dixie’s parents. I already thank him every single day for Hayden and Kash. They are so wonderful, helpful and protective of her. There is a reason he chose Dixie for this Journey and I can hardly wait to hear her testimony one day. We will continue with the many outpatient appointments we have, we will continue 5 days a week in therapy and we will now make gtube clinic part of our monthly routine.

And… we will
be still

XOXO,
Paige

You can donate to Dixie’s Medical Fund here.
You can sign up to take the Parkers a meal here. (Last name: Parker Password: Dixie)

Luke 8:50

But Jesus on hearing this answered him, “Do not fear; only believe, and she will be well.”

Here we are again…
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To say things have been CRAZY since my last post would be an understatement. I, especially, feel like we have been knocked down MANY times over the past couple of weeks and every time we manage to get back up we are faced with another obstacle. I can only imagine that if my sweet D could express her feelings she would feel the same way. Here’s a quick catch up then we will put it behind us and talk about the coming week. Therapy has not been going well for Dixie the last couple of weeks. Like I have told you before, we are in therapy 4 days a week. It’s exhausting on me and I am just the taxi driver, so I can only imagine how tired it must make the patient (Dixie). While, I can still say that I feel like we are progressing in each therapy, Dixie just seems to be over it. We have really been pushing her outside of her comfort zone lately. I often drop her off at each therapy because she tends to do better when I am not in the room as her safety blanket. I have been returning to her very sad and sometimes mad and exhausted. I’ve said it before and I’ll say it a million times… our therapists are AMAZING, they love Dixie like she is their own but it is their job to push her. I think as she is getting older, she is becoming more aware which is making her more cautious and fretful. We have just hit a wall and we are waiting for the breakthrough that we know is on the other side. Since my last update, Dixie has been placed in what they call “hip helpers”. Because Dixie has so many varying issues I never really address them all on here. So, to fill you in.. Dixie has a mild form of Hip Dysplasia (the medical term for a hip socket that doesn’t fully cover the ball portion of the upper thighbone.) You may have also heard it called “frog legs”. Here is an example of Dixie’s:
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She was just placed in her Hip Helpers last Friday. You can read all the logistic details about them here. Basically, they look like spandex shorts that are sewn all the way down to the knee. Preventing her from having “frog legs” or “W sitting”. They are making her develop the core, quad and hamstring strength that she will need to eventually walk one day. Here is the best picture I could get of her in them on that first day:
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Let’s just say.. she isn’t a fan. She has been extra fussy with them on as they are limiting her mobility from moving the way she is used to. We wear them at all times except for sleeping. She hasn’t been sleeping well since she got them because she gets so excited when we take them off that she spends the time when she is usually falling asleep to now playing in her crib with her “frog legs” or feet in her mouth because she hasn’t been able to move like that most of the day. Bless her. I know that she will eventually get used to them and it makes me happy to see her sitting, crawling and standing properly. I think once the new wears off (it hasn’t even been a full week), she will forget they are even there.

On a feeding note since the last time I updated… We repeated and failed another Modified Barium Swallow Study.
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Here is the long/short of it– Dixie aspirated thin liquids during the study, She then had deep penetration when she was given the nectar consistency liquids, She had a few slight penetrations when given the honey consistency liquids but not enough to raise a concern that that consistency would be unsafe for her. So, we left there just like we came.. She cannot have anything thinner than the consistency of honey. We will repeat the MBS again in 3 Months. Although, it stinks that she is still aspirating, I was a wee bit relieved that nothing changed. The thought of changing her right now scared me. We have so much uncertainty coming up in our immediate future and with that I really didn’t want to change something that has been working so well for us. Do I want my child to not be aspirating and to be able to eat and drink whatever and whenever she wants? Absolutely. However, right now, it isn’t at the top of mine or anyone else’s “figure this out right now list”.

On a different and probably more personal than anything I’ve shared throughout this process note. On top of the rough therapies, the hip brace and the failed swallow study.. Last week was the first time that someone (on our medical team) referred to Dixie as having “special needs”. It literally hit me like a ton of bricks were dropped on my chest. After we left and I processed it, the rational side of me says Duh, Paige. She has Dysphasia (difficulty swallowing), She is on thickened feeds, she has a Cleft Palate, A Developmental Delay and we are in therapy 4 days a week. Of course she is or requires “special needs”. But for me and for anyone that knows me and Dixie in our personal lives know that she is the happiest baby on the planet and by just looking at her you would NEVER know the battle we are facing. I am constantly telling people that if we HAVE to have a diagnosis that this(everything we are going through) is a diagnosis I will take. While the journey is long and hard and exhausting I still feel incredibly blessed. We have no reason to believe that in the years to come that this whole process will just be a distant memory. When we are in the trenches with all of the doctors and therapists, I most of time go into tunnel vision constantly telling myself “end result, end result, end result”. I guess I just never came up to breathe or think long enough to process that Dixie does have “special needs”. And, I think that is why hearing it knocked me off my feet a little bit. Its okay though, this whole process does not define us and we are so ready to be on the other side of all of this. Though I can’t see the light at the end of the tunnel quite yet, I know it is there and it will be worth it.
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Now…where we are now-
Surgery is scheduled ONE WEEK FROM TODAY. Next Thursday, September 11th at LeBonheur Children’s Hospital. Surgery is scheduled for 7:30 am meaning we will arrive at the hospital at 5 am. Dixie will be NPO (nothing to eat or drink) after midnight on Wednesday night, so please pray that we can keep her distracted and happy during those waking hours. We are anticipating surgery to last around the 2 hour mark with about an hour and half in recovery. Dixie will probably be away from us for around 4 hours. In our pre-op conversation yesterday, we were also told to wear shirts that we didn’t mind getting bloody. Just what a mom wants to hear, right? Supposedly the immediate recovery can be and is pretty bloody. After recovery we will be taken to our room where we pray she will rest pain free for the most of that first day. What we thought was going to be a one night hospital stay, we have now been told will probably be a minimum of 4 nights but that it really varies case by case. I have made arrangements for my boys but they are both old enough and fully aware of what is going on and neither are very happy about it. Please pray for them and for all the different people that are so generously watching them and taking them to their various activities and playing “Mommy and Daddy” to them. Please pray for Me and Will as we try to focus our mind on Dixie although our hearts will be wanting our family all under one roof. I must say that more than any other surgery or procedure that Dixie has had, I feel like this one is just hanging over us like a dark cloud. The devil is working overtime on my mind and I am so ready for next Thursday to be here and gone. I am not sleeping well, I have made many late night visits the my friend Mr. Google and Mr. Google Images. <—–number 1 no-no , I know. I am so bad about wanting to know every little detail when really I don't want to know anything at all. I feel like I am living with my stomach in knots as I already hurt for my baby girl and nothing has even happened yet. I will say on a very real note that everything I have read and every doctor or therapist I have spoken with have all said this surgery (Cleft Palate Reconstruction) is not a fun one. The process sucks to put it nicely and the recovery sucks even worse. They all also say that it IS WORTH IT. “end result, end result, end result.” While, I am sure our pray request list will grow as we begin the recovery process my list for you right now and over the coming week is this:
Please pray for the team of nurses and doctors that will be with Dixie on surgery day.
Please pray for Dixie to not be scared and for her mommy and daddy too.
Please pray for Dixie as she will be experiencing a tremendous amount of pain, we pray that she is able to rest.
Please pray for Dixie and all of her caretakers as she will be placed in arm/elbow restraints immediately and for 2 weeks.
Please pray that Dixie responds to the feeding techniques after surgery. We will begin by syringe feeding and because of Dixie’s dysphasia and oral aversion we fear she may refuse food.

I am sure I could go on with many many more bullet points but all in all I just ask that you cover us in prayer as there are a lot of moving parts for us over the next 3 weeks (at least). We have been so amazed by the love and support that has been shown to us and I mean it when I say we feel every prayer. I will update again here after her surgery.

XOXO,
Paige

It’s About More Than Just Cold Water

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“It’s about more than just cold water…”
Those were the first words we said to our boys when we found out that Hayden and Kash were nominated for the ALS Ice Bucket Challenge.

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For us, we saw this oh so popular social media movement as a BIG parenting opportunity. I am amazed at the amount of exposure and funds that ALS has received. While our kids see it as fun and games, it gave us the opportunity in our household to remind our children how fortunate we are for our good health and how there are so many other people who are not so fortunate. We were able to educate our children (as well as ourselves) on a disease that has for years taken a backseat as far as exposure is concerned. We were able to talk about the importance of giving back and explain in 7 and 3 year old terms about Charity. At our house my boys OFTEN hear the phrase “but, it will make you a good man one day” we use this saying about many different things whether it be receiving a new chore, learning the act of sharing etc. We are thankful for this opportunity to help aid in helping our sweet boys become good men one day. After our boys were nominated, one of Will’s good friends and fraternity brothers nominated the 2 of us. So, as a family we decided to both participate in the challenge as well as make a donation to ALS.
{pre Ice Bucket Challenge picture}
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You can watch Hayden and Kash’s #icebucketchallenge on my Instagram here ——-> paigecparker .

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Now, it’s your turn… What will you do with this opportunity?!

Did you know:

  • Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord.  When these cells die, voluntary muscle control and movement dies with them.  Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert.
  • Every day, an average of 15 people are newly diagnosed with ALS — more than 5,600 people per year. As many as 30,000 Americans may currently be affected by ALS. Annually, ALS is responsible for two deaths per 100,000 people.
  • The average life expectancy of a person with ALS is two to five years from time of diagnosis.  With recent advances in research and improved medical care, many patients are living longer, more productive lives. Half of all those affected live at least three years or more after diagnosis.  About 20 percent live five years or more, and up to ten percent will survive more than ten years.
  • ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.  ALS can strike anyone. Every single American is threatened by this disease.

You can make a donation to ALS here or here.

And if you haven’t seen this ALS video, it’s worth your time. I promise.

If you are reading this from your phone and the above video isn’t showing up for you, you can view it here.

 

XOXO,

Paige

 

Continuing Dixie’s Story…

Well, hello there!
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Welcome to another chapter…To say it has been a LONG and exhausting 3 months would be an understatement. So much has changed yet so much still remains the same. If you need a catch me up on where we were in May, you can read everything here. On a more “normal” note.. We did have a great summer!

We spent lots of time at the lake and the beach…
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And… Sister turned One!!
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Over the past 3 months I have probably heard the words “nutrition and development” 500+ times. Those 2 things have been our main focus. We have made strides with both of these. We still definitely have a long road ahead of us but every week we see improvement and that is all we can ask for. Dixie has gained 1.5 lbs in the past 3 months. I know it doesn’t sound like much but we were leaping for joy with every ounce. That is a lot for her. She is now a whopping 17 lbs and 4 oz. as far as nutrition is concerned we are still aspirating which means we are still on thickened feeds. She has become very hypersensitive and aversive to certain tastes and textures which limits us to what we feed her. We are mainly on formula with her sometimes allowing us to slip some whole milk in there. As far as actual “foods” are concerned, we don’t do much… She does like banana baby food and Greek yogurt, she has recently started some crackers as well. But, that’s about it and we are okay with that. As far as our weekly routine is concerned we are in Therapy 4 days a week. We see an Occupational Therapist, A Speech Therapist, a Physical Therapist and a Developmental Therapist. They are all amazing and truly a godsend. They have Dixie diagnosed on a 40% delay. Obviously, there is no walking or anything like that but we, as well as our therapist feel confident that in the big scheme of things this will all
just be a season of our life and not a diagnosis that she will be defined by. Hallelujah. So, that’s the long/short of it without boring you with ALL the little details.

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Now, to why I am writing this update…

Where we are now/What’s next:
While we are dealing with multiple issues and diagnosis’ the 3 “official” diagnosis’ that Dixie has right now that most of her issues fall under are…
1. Dysphagia with aspiration – difficulty or discomfort in swallowing
2. Hypotonia – decreased muscle tone
3. Submucous Cleft Palate in the soft palate- A submucous cleft palate is one type of cleft palate. The word “palate” refers to the roof of the mouth and the term “cleft” indicates a split in the palate. The palate consists of both a bony portion (hard palate) and a muscular portion (soft palate).

Back in June we met with the surgeon that would eventually be repairing Dixie’s cleft palate. At that time we were in the beginning stages of the “nutrition and development” process and felt that pursuing the surgery then would have more cons than pros. Now, after 3 months of intensive therapy we feel that Dixie is ready and strong enough for us move forward with this inevitable process. We have discussed everything, in length, with all of our doctors and therapists and everyone is on board and ready for this next step. We met with our Surgeon again yesterday and surgery is now scheduled for September 11th.
We have also been waiting on an MRI of the brain because of her hypotonia. Luckily LeBonheur has agreed to perform the MRI before/during the surgery process. While this means she will be sedated longer it is a much better option than having to undergo anesthesia 2 separate times.

What we know and what we need from you:
-We anticipate the surgery will last around 2 hours. With the MRI being done as well Dixie could be away from us for close to 4 hours or more. Please pray for us as we sit in the unknown waiting for check ins from the doctor and surgery team. Please pray for Dixie that she not be confused while being surrounded by unfamiliar faces before being put to sleep and while waking up. And please pray for the team of nurses and doctors that we are so trustingly putting our baby girl in their care.
-We have been told the the first day can be tough for all involved. There is a possibility of a bloody recovery accompanied by lots of pain. Please pray for Dixie as I’m sure she will be experiencing pain and confusion and please pray for Me and Will as we try and make her as comfortable as possible. We have had nothing but fantastic experience with LeBonheur and we expect this time to be no different.
-We are hoping to only be in the hospital one night. {fingers crossed} Please pray for Hayden and Kash as their lives become interrupted once again and their confusion and worry always runs high. They love their sister and they love their routine. We are blessed with some awesome friends who take them in as their own and make it so much fun for them.
-Dixie will be placed arm restraints immediately after and for 2 WEEKS (in order to not put anything in her mouth) following surgery. This breaks my heart. Please pray for us all as we try to make her as comfortable as possible. Anyone that has had or been in the same room as a 1 year old knows how active they are. We have been told that this is a tough and limiting part to her recovery.
-Overall please just keep us in your thoughts and prayers in the weeks to come and the weeks after surgery. Pray that we not become anxious and that we remember where our strength comes from.
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I will continue to update as surgery draws near and during/after. Thank you for being a part of our village. Lord knows it takes one.

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XOXO,
Paige

The Marathon That Is My Life

“…let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author & perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, & sat down at the right hand of the throne of God. Consider Him who endured such opposition from sinful men, so that you will not grow weary & lose heart.” Hebrews 12:1-3

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I posted this picture to Instagram [paigecparker] the night we got home from the hospital (full story below). As I’m sure many of you know, running is my “thing”. So… Most of the time everything in my life some how relates back to running. This past year has been more like a marathon for us. We keep catching that runners high and then slamming into a wall. Gaining back our momentum and here that bear comes to jump on our backs… I am confident that we will finish strong but right now we are just maintaining pace and taking it one mile day at time. After a scary couple of weeks for us I have finally sat down and compiled the best I can a summary of what has been and is going on with Dixie right now. It’s long and it’s detailed but there is no easy one word answer. So… Here it is:

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{at our first Speech Therapy appointment}
She hasn’t been eating for a while and wasn’t developing. Didn’t roll over, crawl, no babbling, pulling up etc. We have been going to our pediatrician for routine weight checks and between our 6 and 8 month check up we had lost weight (note: babies should never lose weight). We kept not really addressing the issue due to a low birth weight, being a girl (naturally small), trauma during early infancy (her tumor removal surgery) blah blah blah. She showed signs of a major oral aversion. (Oral aversion is when a child is reluctant or refuses to be breastfed or eat.) Her Oral aversion was to the point of her not putting anything to her mouth, turning her head and refusing the bottle, pacifier, toys, food etc.. Finally around 7.5 months during one of our routine check ups our pediatrician noticed something a “little odd” with her throat. We already had speech therapy lined up but she also wanted us to see an ENT. We went to a wonderful ENT here in Memphis where she was scoped and we were told that she had a submucous cleft palate in her soft palate as well as a Bifid Uvula (A bifid uvula is a split or cleft uvula. Newborns with cleft palate often also have a split uvula. The bifid uvula results from incomplete fusion of the palatine shelves but it is considered only a slight form of clefting.). Our ENT said we were on the right track already being lined up with a SLP and that we needed to also get a Modified Barium Swallow Study at the hospital. The MBS was set up so that we could see exactly what was going on in relation to the cleft palate etc. we were never concerned with anything other than the palate and it’s relation to our not eating properly. In the interim we continued our speech therapy and regular weight checks with our pediatrician. Seeing little to no improvement or drastic declines either. We were stagnant. Last Tuesday, we had our swallow study. We sat Dixie in this little foam X-day chair and began to feed her barium through a bottle, the same consistency of her formula. After 1 swallow I heard the SLP say immediate aspiration, after 2 or 3 swallows more she continued to say immediate aspiration and told me to pull the bottle out of her mouth. Aspiration?? What? Why? I could have paid you a million dollars before that swallow study to tell you aspiration was not our issue. I was shocked (as was our PCP and our ENT). They then explained to me that we could go to a thicker consistency liquid (nectar) and see how she responded to that. By this time Dixie was upset but we gave it a go. Nectar… Immediate aspiration. Huh?? What now? They explained that there is one more consistency level would could try (honey). Her “Oral Aversion” quickly came back into play and she refused anything else so we were unable to continue the study with the honey consistency. The Therapist performing the study knew for a fact that she could not handle the thin liquid. Which is the normal consistency of the formula we have been feeding her for 9 months. They said they were very surprised that we have not been hospitalized multiple times with pneumonia due to the amount of liquid that was constantly entering her lungs. They sent us home on the nectar thickened feed and hoped that the aspiration with that was only due to how upset she was during the study. The rest of the day after the study Dixie wouldn’t eat. Once again we gave the excuse of trauma from the MBS etc… By Wednesday morning she still wasn’t eating. She has always been a snacker but never had I seen her consistently refuse all foods for such a long period of time. (To put things in perspective at 9 months she was taking 12-16 oz of formula a day with no baby food. An average 9 month old takes around 24-30 oz of formula a day on top of baby food. We were also 14 lbs. roughly the size of a 3 month old and maintaining between the 3rd and 8th percentile on the growth charts.) Anyway…back to Wednesday: after refusing our morning feeding I called our Pediatrician and our Speech Therapist expressing my concerns. After our whole team (our Pediatrician, ENT and Speech Therapist) talked and compared notes they decided it would be best for us to go ahead and be admitted into Le Bonheur Children’s Hospital. Let me stop here and say, Dixie is not sick. She was never sick. We were on our way to baseball practice with a very happy baby when we got the phone call to head to the hospital. If you looked at her and observed her you would have never known anything was going on. This is something we have been dealing with for a long time with lots of tests and doctors appointments etc. Something we have dealt with silently for many reasons…lack of answers, no diagnosis and the list goes on. It wasn’t until we got to the hospital that things got real for us and they got real FAST.

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{before our first Swallow Study}
Once we got to the hospital we were made aware that Dixie had gone into full oral aversion/failure to thrive. (Failure to thrive refers to children whose current weight or rate of weight gain is significantly lower than that of other children of similar age and gender.) We found out that she was living in a state of modified dehydration. Basically putting out enough urine for us not to know that she was dehydrated. We were told that she was only getting enough nutrition into her actual stomach to just survive. Which explains the lack of energy and the constant sleeping. Imagine my fear, guilt and sadness as a mother when I hear the words that for the last 9 months we have just been merely surviving and I had no clue. Lack of nutrition in the stomach means lack of nutrition in the brain which explains lack of development. They started her on IV fluids immediately. After about 12 hours of IV fluids she started responding to the “nectar” thickened feeds and according to her O2 stats we had no reason to believe she was aspirating that. We are now at day 2 in the hospital/Thursday for those of you that are keeping up. In the meantime while our main focus was hydration and nutrition we were being seen by countless drs , residents, neurologists, ENTs, dietitians, OTs, PTs, and Speech Therapists. We were able to rule out that while we are fairly confident she has a soft cleft palate, we do not believe it is in any way related to her aspiration (the cleft palate is something we are choosing not to pursue at the moment. We will
eventually refocus our attention to it but right now it is not causing any threat or problems that we are aware of). We were told that what she does is called “silent aspiration” (aspiration of food and liquids without coughing). Which explains why until we actually saw it under X-ray there was no other reason to believe she was aspirating. Our main goal for Thursday night was to continue hydrating and feeding the nectar thickened feeds. While drs seemed to believe she was not aspirating the nectar feeds, I was not convinced. As a mother, my biggest fear is that we would be sent home and slip right back into that oral aversion/failure to thrive slippery slope. I knew that I saw her aspirating nectar with my own eyes on Tuesday during the MBS and until I saw anything different we weren’t leaving. After much hesitation due to the amount of radiation she had and would encounter the Dr agreed to order a repeat swallow study for my “peace of mind”. Transport came to get us and we got in our little red wagon and went. When we stepped off the elevator at radiology I looked at Will and said “I feel like I’m going to throw up”. I don’t know why but I was extremely nauseous. Remember in the back of our mind we knew we had 3 options (thin, nectar, honey) our next option was a feeding tube. And remember we knew that she was aspirating (according to our first MBS) 2 of the 3 options. Once we got into our swallow study at the hospital we obviously skipped the “thin” step all together because we already know she cannot handle that. We started with “nectar” and discovered there was immediate penetration (Penetration is when food or liquid goes into the trachea and stays above the vocal cords.) Basically, because of the penetration it could turn into aspiration by the end of a nectar thickened feed. I knew there was a reason I felt uneasy about her and the nectar and I am so glad we fought for the repeat MBS. She was handling the study very well thanks to the wonderful child life specialist and all of the distractions a children’s hospital has to offer so we were able to continue testing with the honey thickened feeding aka our last resort. Thankfully she responded to the honey consistency with no penetration or aspiration. Praise Jesus. We left radiology thankful for an answer. When we got back to the room and continued feeding her, she started throwing up. At this point I was in tears. We finally had a solution.. Why was she throwing up? The drs came in and told us that although she was not aspirating that thick of a feed that her stomach may not could handle it. They prepared us and talked us through our worse case scenario of a feeding tube and it really felt like that was the route we were going to take. We were tired of wondering if our baby was getting enough nutrition and the guessing game was becoming too much. We are now on Friday afternoon. Our goal: continue to slowly introduce the honey consistency feedings with hopes that her body adjust to it. We prayed a lot. We felt your prayers, a lot. We had a successful feed our next try, then we had another successful feed, and another and another. Hallelujah!! Answered. Prayer. So…. They let us come home. With a diagnosis of “dysphagia”. We still have a lot of unanswered questions, but we are home and she is eating thanks to the honey thickener (note: we are also on a special bottle from Japan called “The Pigeon” made specifically for cleft palate babies. It only requires compression and not actual sucking and has been a lifesaver for us.)

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{hospital shenanigans}
Obviously we can’t magically get back all the development we have lost or never even attained, so she will be in a lot of early intervention services, OT, PT and Speech. And only time will tell how she responds. Our prayer is that she doesn’t go back into that oral aversion. Neuro has also ordered some chromosomal testing so we are waiting on the results of that, though any results could or could not be related. We realize we have a long road of therapy ahead to try to get our development back on track and not slip back into failure to thrive. Our short term goals are nutrition and development. Right now we are focusing on weight gain and developmental milestones while on the thickened feeds. Our long term goals are to eventually be able to tolerate thin feeds again. We have been told that some people just aspirate and you don’t know why and it goes away. That’s our hope. Right now we have no idea why she is aspirating and we have no idea if she will ever not aspirate. Time is our friend. We still continue to pray for answers. Though I am ecstatic over the strides she has made in the past 5 days, I still feel like I am living with a knot in my stomach. Will she wake up tomorrow and refuse her bottle? Will she ever be able to eat something as simple as ice cream or a Popsicle? Play dates have been replaced with therapy appointments and our daily routine has changed around her feeding schedule. Our boys are well aware of what has been going on and have been tremendous troopers…but to say that it has not affected each and every one of us would be a lie. We only have so many hands and so many hours in the day.

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{morning formula prep}

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So… To anyone who text me “what is going on with Dixie?” Or “I didn’t even realize she was sick” and I didn’t respond. I apologize. There was no quick answer. There were moments when I didn’t even know the answer. I didn’t even know where to begin to explain it. It just seemed easier keeping it in our little circle. I hope that this post can clear up any confusion and maybe provide a little bit of an explanation. I ask that you continue to lift us in prayer in this situation that even we were not aware existed for so many families. I’ve never been more aware of the simple things that we take for granted, like that ability to eat and thrive. I am confident that Dixie will grow up to be a fully functioning girl and young woman. We are surrounded by a great team of doctors and therapists that I truly feel like care about us. Though we don’t know what our future holds we will praise him in this storm and take it one day at a time. We do know we have options if need be. Our daughter will not go without the proper nutrition she needs. We know that this is not a death sentence. Even though I keep asking why me, God? I have 3 kids, a husband that travels for work,no family in town and friends that I rely on entirely too much sometimes. I know there is a reason why he is writing this as part of our story. I continue to be a pillar of strength for him while not promising I won’t have moments of weakness. We are well aware that there are families facing much bigger issues than ours on a daily basis. We will continue to restructure according to our new schedule though it may not be what we had planned we know it’s all part of His plan. Thanks again for all of the prayers, calls, texts, Facebook messages, visits etc… We are truly blessed with a community like no other that I am forever thankful for. I will do my best to keep you all posted while sometimes that doesn’t come without a lot of words… Thanks for being a part of our journey. It takes a village, y’all!

XOXO,
Paige