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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