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

 

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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