Foward March
Well here it is, MARCH already. March means a lot of things really, Spring is coming. . . .Winter is almost over. . . .The snow is wetter, really lots of different things. But for me, right now, it means only one thing. . . its time to head down south.
I have to take Parklen to the Denver Children's Hospital every couple months, so I am used to it in some aspect. However, I am completely filled with frustration. I am frustrated for my baby. . .he has been on treatment for ALPS for 13 months now and truly he is still not better. . .he has improved, he isn't vomiting every second or getting the fevers and for that I am thankful.
Parklen just isn't well. There isn't a night that goes by that he isn't waking up multiple times, because his stomach hurts, he needs a drink of water(he is constantly thirsty and can chug a bottle of water in a matter of seconds) or because he just "has ouchies"
Every day I give my baby medicine (its the kind they give you if you receive an organ transplant) so that his body doesn't attack itself. (Pretty strong stuff you can imagine) Every day I listen to my baby cough, like an old man who has been smoking for his ENTIRE life, Every day I change a countless amount of diarhea diapers (literally can be 5 an hour) Parklen cries about not feeling well every day. I don't want this to come across as me complaining for myself, cause I am not. . . I am complaining out of pure frustration for my son. I want to help him, I want him to feel better, I want his symptoms to disappear. . I just feel helpless.
When I travel to Denver, I answer a lot of questions. More of the same each time. I speak to great and wonderful doctors. . . .but I feel like I am not being heard. We live so far away that they cant monitor his symptoms well enough to truly understand.
The last time that Parklen was hospitalized I met a couple, they had a son with ALPS. He was just turning 20 years old and starting his first year of College, AND, they informed me, he was doing well. I was thankful to hear it. Then the mother told me it took a good 7 years to get his disease under control, yes SEVEN years. They were in and out of the hospital, on and off of meds, trying experimental treatments, traveling across the country. . . they tried so much. Seven years after they received a diagnosis for their son they finally found some meds that helped him. The hard part about ALPS is that it is different for each person that has it, there isn't a universal treatment. I have been thinking about this family a lot lately. . . in the midst of my frustration, thoughts of them keeps me focused.
I have trusted God with so much in my life, and he IS big enough to trust with Parklen's treatment. I just have to remind myself of this sometimes. . . .
So here I go again, heading south. .. . . .
I have to take Parklen to the Denver Children's Hospital every couple months, so I am used to it in some aspect. However, I am completely filled with frustration. I am frustrated for my baby. . .he has been on treatment for ALPS for 13 months now and truly he is still not better. . .he has improved, he isn't vomiting every second or getting the fevers and for that I am thankful.
Parklen just isn't well. There isn't a night that goes by that he isn't waking up multiple times, because his stomach hurts, he needs a drink of water(he is constantly thirsty and can chug a bottle of water in a matter of seconds) or because he just "has ouchies"
Every day I give my baby medicine (its the kind they give you if you receive an organ transplant) so that his body doesn't attack itself. (Pretty strong stuff you can imagine) Every day I listen to my baby cough, like an old man who has been smoking for his ENTIRE life, Every day I change a countless amount of diarhea diapers (literally can be 5 an hour) Parklen cries about not feeling well every day. I don't want this to come across as me complaining for myself, cause I am not. . . I am complaining out of pure frustration for my son. I want to help him, I want him to feel better, I want his symptoms to disappear. . I just feel helpless.
When I travel to Denver, I answer a lot of questions. More of the same each time. I speak to great and wonderful doctors. . . .but I feel like I am not being heard. We live so far away that they cant monitor his symptoms well enough to truly understand.
The last time that Parklen was hospitalized I met a couple, they had a son with ALPS. He was just turning 20 years old and starting his first year of College, AND, they informed me, he was doing well. I was thankful to hear it. Then the mother told me it took a good 7 years to get his disease under control, yes SEVEN years. They were in and out of the hospital, on and off of meds, trying experimental treatments, traveling across the country. . . they tried so much. Seven years after they received a diagnosis for their son they finally found some meds that helped him. The hard part about ALPS is that it is different for each person that has it, there isn't a universal treatment. I have been thinking about this family a lot lately. . . in the midst of my frustration, thoughts of them keeps me focused.
I have trusted God with so much in my life, and he IS big enough to trust with Parklen's treatment. I just have to remind myself of this sometimes. . . .
Hey Amanda,
ReplyDeleteKnow that I am praying for you and your baby. You are a strong woman. I admire that.