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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)

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