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

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The Final Countdown (Marathon Countdown, that is) and a GIVEAWAY!

2 months from today, I will be well on my way to finishing the TCS New York City Marathon. Wowzers. Never ever did I think I would be training for a Marathon. I fell in love with running only a short 3 years ago. I fell fast and hard and that got me this…

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Yup, That was me. 2 Years ago. Much like my love for running,  I was training fast and hard and I wasn’t training smart. That landed me a really pretty leg accessory. Not only was it the most expensive “shoe” I’ve ever bought, It’s a situation I never want to be in again.

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After recovering from my stress fracture, I knew I had to start running smarter. I did some research, and that’s when I discovered the awesomeness that is ProCompression. Holy Smokes Batman…Game.Changer.

Let me tell you why I choose ProCompression, then I’ll tell you all about the PC Advantage and THEN you can enter for a chance to win a FREE pair of socks from the amazing folks over at ProCompression.
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It is very rare that you will see me running without a pair of ProCompression socks on. I have purchased many of pair (3 to be exact) of ProCompression Marathon Socks on my own dime before the nice folks over at ProCompression sent me a pair to review. For me, after my stress fracture I needed something protecting my legs and feet. These Marathon Socks have become my security blanket. Not only do I NEED them for the circulation and protection as well as the recovery aid that they provide me, I’ve also gotten to where I can’t or don’t like to run without them. As I am entering the final countdown of this marathon training, I can’t imagine training without ProCompression.
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Here are all the logistical details about ProCompression:

The PC Advantage

PRO Compression products are specifically designed to give you an edge and help you perform at the highest level possible.

They can be worn before, during and after a workout as the benefits of compression speed up muscle recovery through enhanced vascular flow in your lower extremities.
True Graduated Compression

PRO Compression socks deliver maximum comfort and speedy recovery times. The science is complex, but benefits such as improved blood flow, stability and comfort are universally understood. The moment you put these socks on your feet, you will feel the difference.

This design requires more effort to put on than standard socks. But it’s that extra effort and much-needed compression that make all the difference. Be patient and your feet will thank you.

True graduated compression promotes circulation by pushing fluid up from your feet and ankles to toward your knees. This design also helps reduce swelling and inflamation while providing critical support to muscles and tendons.

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Triathletes, Runners and Endurance Athletes

Your feet and legs are your engine. Anything less than peak performance and full recovery means unnecessary discomfort while operating at less than your best. Change all of that with the advanced design and materials that make PRO Compression socks your ultimate recovery tool.

Beyond traditional high compression, be sure to check out our specialized running sock. The innovative design, lightweight construction and stabilizing zone make it one of the most comfortable, yet effective, running socks available.
Golfers Gain an Edge

A key benefit of wearing compression socks over eighteen (or thirty-six!) holes is the delay of muscular breakdown and fatigue that comes from long-term play. This significant improvement enables you to perform at the highest level for longer durations of time than ever before.

Our goal is to give you yet another tool that will give you an advantage and help you play your best. Focus on your game – not the discomfort in your feet.

Elite athletes worldwide have understood and embraced the benefits of compression wear for decades. Increased blood flow, speedier recovery and greater all around comfort – all a huge component of your game and something the majority of golfers have been missing for years.
Design
PRO Compression socks are the result of years of innovation. We started off with a unique design, used by endurance athletes for years, and added golf-specific enhancements for maximum comfort and performance. This sock was designed to keep you ahead of the competition. A better footwear choice is simply not available.
Materials

Our world-class design is complimented with specialized materials. Without them, it would be impossible to create revolutionary performance footwear. Cotton and wool simply aren’t going to cut it in a world where the best athletes rely on the highest-quality gear. PRO Compression uses a proprietary blend of nylon and poly materials, optimized for performance, benefiting both amateur and professional athletes.
Manufacturing

All socks are designed and manufactured in the USA, giving PRO Compression complete control over the quality of every sock we sell, from design through manufacturing and distribution.

Our goal is to deliver a world-class sock that will enable you to play better than ever and recover more quickly than previously possible.

We’re confident you’ll feel the difference immediately.

Done…I’m sold. Are you?? I just got finished with my longest run yet.. 18 LONG miles! I was so excited to pull out my August Sock of the Month to tag along with me. {by the way, if you sign up for ProCompression emails, you can get in on their Sock of the month fun, too} I’d say we managed quite well…
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Also, Pro Compression just recently came out with a brand new women’s legging that I have every intention of finishing my marathon in. I can’t wait to get my hands on them!!

Have you tried ProCompression? Do you want to? Comment below and share with me your running MUST HAVE and you could win a FREE pair of Marathon Socks!! hashtag, winning 🙂

XOXO,
Paige

CLICK RIGHT HERE FOR YOUR ENTRY:
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