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Continuing Dixie’s Story…

Well, hello there!
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…



And… Sister turned One!!

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.

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.
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.



One thought on “Continuing Dixie’s Story…

  1. Pingback: Luke 8:50 | sanity amongst chaos

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