Tuesday, July 30, 2013

Clearing the Airways

Since Rae was little we have been in and out of the doctor's office due to a relentless cough and nasty sounding chest congestion (I teasingly call her my little bulldog). Sometimes there was a respiratory infection, once it was pneumonia, and more often than not it was just nasal drainage. We were living in a vicious cycle and it made for some very sleepless nights.

In an effort to combat these villains, we placed a humidifier in her room (use distilled water and a filter...worth every additional cent to keep that sticky film off of everything in your child's room), we elevated her bed with a foam wedge, and we used a fan to keep air circulating (now she has to have one...just like her G-Boss). The respiratory issues persisted.

Then we received her diagnosis of Rett Syndrome (one of complications caused by RS is respiratory infection and pneumonia) and I soon found some pretty amazing families and a whole new support group. One mother posted a picture of her young daughter using an airway clearance system called The Vest made by Hill-Rom. I wanted one! If this machine would help alleviate some of my restless nights (it doesn't really I still fret) hearing Rae's cough and bulldog breathing then we had to get one. Fortunately, Rae's doctors were in complete agreement and we started the process of ordering Rae her own system.

It took three & a half months!!!
(I know that doesn't sound very long, but apparently this process usually takes two or three weeks)

We sent a request into CareCentrix (our outsourced DME provider) and they said Hill Rom was out of network. Ok. Of course I could apply for financial assistance with a payment plan to cover what our insurance wouldn't. Uh...no thanks. Next!

We sent a request in for the Smartvest by Electromed. Sorry, they aren't in network either. Are you kidding me? I called CareCentrix and asked the customer service (haha...that is such a joke) rep which provider was "in network" and her reply, "I'm sorry I can't tell you that." (I am not kidding...she actually said that) There are only three companies that make airway clearance systems. We have already ruled out two so WHO is the third? "That's a different department and we have to have a prescription on file in order to tell you." Our doctors have already sent in two requests. "We have no record of a request being sent." So, you're telling me that reps from the other two companies AND our doctor's office are lying to me about sending in the requests? I believe you are mistaken and your people aren't notating her file appropriately. "Is there anything else I can assist you with?" (you're kidding right you haven't assisted me with anything) No thank you. *click* (yes, I hung up on her)

I started frantically searching the internet for the third provider (don't ask me why I ended up doing this when the doctor's knew who it was...it didn't even cross my mind to call them and ask...duh!). I finally came up with the name Respitech on a website for Cystic Fibrosis and they make the inCourage. Through the process of elimination this company HAD to be the provider that was contracted with CareCentrix. So, a third request was submitted and what do you know...it was approved!

Through this entire process the three companies that make these systems offered the best service to us. They called to give me status updates, offered financial assistance, and understood when I canceled our pending orders and searched for our in network provider. Our doctor's office was equally as amazing by following up with us throughout this three month process and were as relieved as I was when it was finally finished.

Rae's wearing her new vest.
I have to give a nod to Sarah at Respitech. She was on the ball. She walked us through every step of the process. Kept me up to date on the status of our request. Called to follow-up with me once the inCourage system was shipped. Made sure I was trained and has called for updates on how Rae is handling her new therapy (it's hit or miss). Some may say that it is just part of her job and that may be true to a degree, but she does it with a smile in her voice (yes, you can hear smiles) and a confident, supportive tone. The local trainer for Respitech was equally as helpful in teaching me how to use and care for this very expensive piece of equipment. I'm sure I'll be seeing her again in the future for other medically necessary items.

Rae has her ups and down (see videos below) with her inCourage system and the new addition to our morning routine has taken some getting used to, but we're coping. It upsets her from time to time, but it is helping her by making her cough more productive and clearing fluids from her lungs reducing the risk of infection (she also drools a bit more). I only hope that one day she will better understand why she has to wear a vibrating vest. I too am still adjusting to her new therapy. The morning session is smooth sailing, but I'm still trying to work that second session into our afternoon. Fortunately, even with just one 30 minute session I can already hear a difference in her breathing and her lungs sound great! (according to her doctors) Now, if we could only get this ear infection thing under control.

Here is an example of a good therapy session...

Here is a less pleasant session...

Friday, July 12, 2013

Rett Syndrome Awareness: Sock Monkey Style

One of the first toys that Rae really responded to was a brown stuffed animal monkey. We were cruising around Babies R Us, just killing some time, when I first saw Moe-Moe (his nickname). I picked him up and showed him to Rae. She laughed! She actually cracked a tiny grin and laughed!! I had to buy him...what else could I do? I was completely helpless against that audible joy. Since then there has been no turning back. We have monkeys coming out of our ears!

I eventually bought a second Moe-Moe because the first one was being so well loved that he needed a vacation. Now they take turns playing and comforting Rae (we never go to the hospital without Moe-Moe). In addition to Moe-Moe & Moe-Moe Jr., we also have three HUGE Schweetheart apes by TY, a Dexter monkey (also by TY), monkey clothes, and other assorted toys. We found something she was interested in and we ran with it.

So, when an image similar to the one below popped up on my Facebook newsfeed, I immediately sent an email to Sew Loved Sock Monkeys asking how I can acquire Rae's next monkey!

This handmade sock monkey will be joining our little monkey family in a week or so (she's traveling all the way from the UK) and I'm sure she will be a welcomed (and well loved) addition. We haven't given her a name yet. Any suggestions?

If you'd like to find out about "rehoming" a sock monkey check out: Sew Loved Sock Monkeys

Tuesday, July 9, 2013

Disney Princess Half Marathon & GP2C

Princess Rae
Several years ago, I lost A LOT of weight. After I lost the majority of my excess weight, I started dreaming that I was a runner. I could hear my feet pounding the pavement beneath them. I could feel my hair swishing back and forth brushing my neck. I could smell the salty marsh mingling with the fresh air while rhythmically breathing in and out (I have very vivid dreams). I woke up inspired! I bought appropriate running attire & good running shoes. I loaded up my iPod with upbeat music to push me further during each run. I was ready!

Then I twisted my ankle. It took FOREVER to heal. When it finally started to get better I twisted it again (guess I'm a klutz). My running was abruptly halted. Years went by and my running shoes became lawn mowing shoes. My shorts became clothes I wore to clean the house. My iPod sits on a shelf in my office collecting dust. At 27, I learned that I have arthritis in both of my knees, my lower spine, and my hips. Combine this with bone loss and none of my doctors advise that I take up running ever again. It will wreak havoc on my joints. I can briskly walk, ride a bike, or swim.

Now at the age of 32, the desire to run again (against doctor advisement) started bubbling up once more. I feel that even with my various ailments they are nothing compared to what my daughter is living with on a daily basis. Rae might never walk, much less run. The least I could do (or try to do) is run for her. My biggest risk is causing more damage to my joints which could complicate my ability to care for her physical needs long run.

This is where our heroine (yes, that is what you are) comes into the picture. Ria, my sister by choice and in Christ, has offered to run for Rae...for both of us really. I feel so blessed to have her and her family in our lives and so thankful that she is willing put effort into training to run for Rae.

Ria & Family

Ria has already registered with Disney Princess Half Marathon and with GP2C. Her goal is $750, but I think we can do better than $750. Correction, I know we can do better than $750!! My goal is $1000. All donations MUST be in before Feb 1st. This is for a great cause and every penny counts. The runners are raising money to help find a cure for Rett Syndrome. Please help us by helping them!

Here's the link to her donation page: