My first task as a new PCD mom, was to have 25 shirts sold and printed, to raise awareness, and I was successful. I can't thank everyone who bought shirts enough. But my next task is to make sure they are worn, in various parts of the US, to bring awareness everywhere!
I read an interesting fact the other day, which has been rather unsettling to me. Of all the therapies and treatments used on people who suffer from PCD, not of have been tested on PCD patients. Most therapies are modeled after patients of Cystic Fibrosis. This is my fuel for bringing awareness to PCD and raising funds so that research can continue, on PCD patients.
As Rylee battles yet another sinus infection and some coughing that is causing wheezing, my main goal is to keep her lungs clear. It is a sad thought to think every time I hear the doctor say her lungs have mucus buildup, that I worry it is slowly causing permanent, irreversible damage. That's why doing the nebulizer treatments and vest therapy are so important. And while I still feel a bit guilty having her sit hooked to some machine for at least and hour a day, all the new Christmas toys certainly have helped. The more I have her hooked to a machine at home, the less likely we'll have to spend another few days in the hospital--so our $16,024.00 Vest Therapy is serving its purpose!
So we continue on with our daily regimen of therapies and medications and hope that we ring in the New Year with a healthy 4 year old!
Saturday, December 29, 2012
Monday, December 17, 2012
Christmas is upon us...
Christmas is upon us and I cannot wait! Spending time with family, eating good food and watching the eyes of my little girl light up after Santa comes. I must admit, I'm a bit worried that the "cold" Rylee seems to be battling since early November is going to peak into something more over the holiday weekend. So tonight, as I pack for our visit with family this weekend, I go through the list several times, making sure I have everything she could possibly need--congestion in the lungs, a cough that sounds deeper in the lungs, sinus infection or decreasing oxygen levels. Motrin and Tylenol, oral steroids, Vick's vapor rub, thermometer, nasal sprays, saline nasal spray, allergy meds, acid reflux meds, and nebulizer vials. In addition, we'll wheel around our 16lb duffel bag with Rylee's Vest System and her nebulizer.
But this is our life, and so it will be for a long time. The Vest has become a part of our daily routine, 3 times a day. I sometimes feel guilty, it seems that a good portion of the day, my 4 year old is hooked to some kind of a machine. Up for 30 minutes in the morning before heading out the door to school and she spends at least 12 sitting on the couch hooked to the Vest and nebulizer. Just prior she is doing a nebulizer treatment of albuterol and Pulmicort, that lasts about 10 minutes. During her school day, it's a 20 minute session of the nebulizer and Vest--but she gets to play with her Leappad or her director's iPad, so she's not complaining much! But again at night, it's home for another 20 minute session of Vest and nebulizer and then another 10 minute nebulizer treatment of albuterol and the Vest. Jeff has been awesome at waking up a little earlier and going to bed later, so that Rylee gets her nebulizer treatments during sleep--helps her get through the night better and it doesn't seem like she's hooked to some machine most of her day.
But Rylee, she is trooper. She finds something to play with and sits, no matter how long and does the treatments. Very seldom does she complain or say she doesn't want to do them. I'm hoping that deep down, she really knows that this is helping her, not only now, but in the long run. Although sometimes I wish she was, she's not a complainer at all. If Jeff and I didn't go on gut instinct, more often than not, we'd never know she had a sinus infection so bad that her sinuses were a mess of puss or that she had double pneumonia-one side so compressed that the doctor was sure no air was passing through that portion of the lung. I often wonder if she doesn't complain simply because she doesn't know any different. Being chronically sick, especially in the sinuses and lungs, she very rarely knows what it is like to not have pain in the lungs, a wet cough or headaches from sinus pressure. It is a hard thing for a mother, or any parent, when you realize this. But, it just adds fuel to my mission, to bring awareness and research to PCD. These Vogels will not stop fighting for more and better research, so that we don't have to go to bed each night worrying at what age our little girl will develop permanent, irreversible lung damage. So we continue forward, doing anything and everything we have to, to keep those little lungs of hers growing and free of junk!
But this is our life, and so it will be for a long time. The Vest has become a part of our daily routine, 3 times a day. I sometimes feel guilty, it seems that a good portion of the day, my 4 year old is hooked to some kind of a machine. Up for 30 minutes in the morning before heading out the door to school and she spends at least 12 sitting on the couch hooked to the Vest and nebulizer. Just prior she is doing a nebulizer treatment of albuterol and Pulmicort, that lasts about 10 minutes. During her school day, it's a 20 minute session of the nebulizer and Vest--but she gets to play with her Leappad or her director's iPad, so she's not complaining much! But again at night, it's home for another 20 minute session of Vest and nebulizer and then another 10 minute nebulizer treatment of albuterol and the Vest. Jeff has been awesome at waking up a little earlier and going to bed later, so that Rylee gets her nebulizer treatments during sleep--helps her get through the night better and it doesn't seem like she's hooked to some machine most of her day.
But Rylee, she is trooper. She finds something to play with and sits, no matter how long and does the treatments. Very seldom does she complain or say she doesn't want to do them. I'm hoping that deep down, she really knows that this is helping her, not only now, but in the long run. Although sometimes I wish she was, she's not a complainer at all. If Jeff and I didn't go on gut instinct, more often than not, we'd never know she had a sinus infection so bad that her sinuses were a mess of puss or that she had double pneumonia-one side so compressed that the doctor was sure no air was passing through that portion of the lung. I often wonder if she doesn't complain simply because she doesn't know any different. Being chronically sick, especially in the sinuses and lungs, she very rarely knows what it is like to not have pain in the lungs, a wet cough or headaches from sinus pressure. It is a hard thing for a mother, or any parent, when you realize this. But, it just adds fuel to my mission, to bring awareness and research to PCD. These Vogels will not stop fighting for more and better research, so that we don't have to go to bed each night worrying at what age our little girl will develop permanent, irreversible lung damage. So we continue forward, doing anything and everything we have to, to keep those little lungs of hers growing and free of junk!
Saturday, December 15, 2012
My mission
Well, it's been about 3 years since I've last posted. I had great intentions of keeping up the blog about Rylee, but it didn't go as planned. These days, I have a new mission, Primary Ciliary Dyskinesia awareness. A month ago today, my little girl was diagnosed with PCD, a rare genetical disorder that affects the ears, sinuses and lungs. I have made it my mission to get the word out, raise awareness and hopefully funds for research. I'm not doing this for just Rylee, but for all those children like Rylee, who fight for their breath more often than we realize.
For anyone who knows my little girl, you know she is a happy and carefree little girl who loves dancing and singing. From the moment she was born, she has brought nothing but joy our lives.
From the day Rylee was born, she has struggled and for 4 years we have fought to get answers for her. She has suffered more in her 4 years with illness than many do in a lifetime. She averages pnuemonia twice a year, in addition to multiple sinus infections, colds and coughs. She has been hospitalized 5 times and as I read blogs and post from other PCD, I've realized this is minimal. I look around at her therapies, treatments and medications, all I can think about is this is not the life I wanted for my daughter. But as I look at her, I am reminded what a fighter she is. Not only will she never have to fight this battle alone but that she will never give up. She is so determined and brave and goes through countless procedures and tests, never complaining or showing an ounce of terror. She is where I get my strength.
I'm not sure how any parents prepares themselves for things like this, if that's even possible. I remember asking the night before her ciliary biopsy that she would simply make it through the anesthesia without problems. I prepared myself for her having to be admitted if she had any respiratory problems, but she did great. But never did I think I was going to hear the doctor tell us what he did--no movement at all in her cilia. A thousand thoughts rushed through my mind and the tears began to fall. I wanted to hold my baby girl and tell her no matter what, everything was going to be fine. Everything my little girl has ever dealt with has all started to make sense. I remember everyone saying, well at least you have a diagnosis and you know what you are dealing with. But, I almost wish I hadn't had that diagnosis. I'd had been walking around for 4 years, waiting for the day we'd wake up and Rylee would "outgrow" all her issues. There was hope, something we could hold on to. I felt like that hope was gone with this diagnosis.
It took a while for it to sink in for Jeff and I, but we are ready to fight this fight together, as a family and do whatever it takes for our daughter. We will stop at nothing to get her the care she needs, but more importantly deserves. We ran though all the different emotions that I'm sure parents do in this situation and are still dealing with them. I imagine something like this takes a while to make sense of and deal with, but our support system of family and friends have been amazing.
So, as I snuggle my little girl tonight, I remember how truly blessed we are to have her in our life!
For anyone who knows my little girl, you know she is a happy and carefree little girl who loves dancing and singing. From the moment she was born, she has brought nothing but joy our lives.
From the day Rylee was born, she has struggled and for 4 years we have fought to get answers for her. She has suffered more in her 4 years with illness than many do in a lifetime. She averages pnuemonia twice a year, in addition to multiple sinus infections, colds and coughs. She has been hospitalized 5 times and as I read blogs and post from other PCD, I've realized this is minimal. I look around at her therapies, treatments and medications, all I can think about is this is not the life I wanted for my daughter. But as I look at her, I am reminded what a fighter she is. Not only will she never have to fight this battle alone but that she will never give up. She is so determined and brave and goes through countless procedures and tests, never complaining or showing an ounce of terror. She is where I get my strength.
I'm not sure how any parents prepares themselves for things like this, if that's even possible. I remember asking the night before her ciliary biopsy that she would simply make it through the anesthesia without problems. I prepared myself for her having to be admitted if she had any respiratory problems, but she did great. But never did I think I was going to hear the doctor tell us what he did--no movement at all in her cilia. A thousand thoughts rushed through my mind and the tears began to fall. I wanted to hold my baby girl and tell her no matter what, everything was going to be fine. Everything my little girl has ever dealt with has all started to make sense. I remember everyone saying, well at least you have a diagnosis and you know what you are dealing with. But, I almost wish I hadn't had that diagnosis. I'd had been walking around for 4 years, waiting for the day we'd wake up and Rylee would "outgrow" all her issues. There was hope, something we could hold on to. I felt like that hope was gone with this diagnosis.
It took a while for it to sink in for Jeff and I, but we are ready to fight this fight together, as a family and do whatever it takes for our daughter. We will stop at nothing to get her the care she needs, but more importantly deserves. We ran though all the different emotions that I'm sure parents do in this situation and are still dealing with them. I imagine something like this takes a while to make sense of and deal with, but our support system of family and friends have been amazing.
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