So it's back to school tomorrow for James -- his second year of preschool. He will be back at Loma Vista in Chico, but this time in the innovative classroom, which is much bigger, and has a mixture of kids with disabilities and kids without. It is going to stretch him a lot. I am excited for the growth that I know he is going to have this year. It feels like this is his last year of being my baby, and if he was ever going to seem like such a big boy, it is now more than ever!
I have been on the phone the past couple of days making plans with the school nurse for him to be able to be catheterized at school, and with his teacher, arranging a one-on-one person to sit with him at meal and snack time to reduce the vomit risk at school. One awesome thing is that Enloe Hospital is putting on a presentation next Friday on his diagnosis - Eosinophilic Esophogitis - which is the cause of his vomiting -- and since it is a fairly new diagnosis, it is not well known or well understood by doctors, or anyone in James' life, really... but the awesome thing is that I already have the school nurse, his teacher, his OT, and a nurse from playcare interested in going to the presentation!! Woo-woo!! Now I just need to bring a flyer for it to his pediatrician's office, and I think I've covered all my bases!! So, after that, hopefully more people in his life will understand him better and be more of an advocate for him in that area! Unfortunately, I am going to be in San Francisco with James that day at Spina Bifida clinic, so I won't be attending :-(
We have been going through a scary time with James lately as we are convinced that he is having tethered cord issues and rapidly losing function that he once had. Lately, he is combat crawling again, which means that he is down on his belly and just pulling himself with his arms to get around. He still CAN crawl on hands and knees, but he only does it if he is reminded to use hands and knees, and he struggles a lot more than he used to. He is very, very wobbly. He is not climbing like he used to, cannot climb into his wheel chair like he used to, cannot pull to stand like he used to, and cannot take a step with his right leg like he used to. His right leg has always been his stronger leg, and now it does almost nothing :( Both of his feet are turning in SO much, and they never were bad at all. Please pray for him as we talk with doctors, and as his therapists make their reports for his neurosurgeon over the next few days. Pray for wisdom for us as parents as we navigate this thing called parenthood to a child with special needs. We feel helpless and fearful, even though we know that God is sovereign over the situation. It is difficult to remember that in each of those moments throughout our day when life feels out of control.
As for an update on the nursing thing, I have called every single nurse on the list of contacts that I got in the mail, and half of them have disconnected numbers or are no longer doing in-home nursing, or they are doing it but they already have a full time schedule with other families... I have yet to pin down a time to talk with my neighbor, believe it or not!! Actually, it doesn't surprise me, since we are both mommies to needy kids, and it's not like we have all the free time in the world to sit and chat! But I do want to make that a priority soon!! We have a friend who is a nurse, and I SO wish that she could be James' in-home nurse, but there are many hurdles that I can foresee for that to happen... BUT I am still making that my prayer, because I know that our God is great at overcoming hurdles for us! After all, He has overcome the world!!
I spoke to a lady on the phone today for over an hour about stem cells. She is a mommy to a three year old girl with Spina Bifida, who raised the funds to take her daughter to China for stem cell treatments, but when they got there, they found out that, due to her blood type, she was unable to receive the treatments. This woman knew a lot about stem cells and how they work in the body, and I learned SO, SO much just in the hour that we spoke today. I am excited for James' future after talking to her, and I do believe now more than ever that stem cells can do wonders in the body! The difficult part is getting the treatments at all, and also getting them in the way that would be most beneficial for our kids. There are a ton of legal and political and all kinds of crazy factors that are driving the stem cell research in our country and in our world (or lack-therof, I should say). But I was inspired today. And educated. And that is worth something!
That's enough for now....
signing off,
Lynae
I have been on the phone the past couple of days making plans with the school nurse for him to be able to be catheterized at school, and with his teacher, arranging a one-on-one person to sit with him at meal and snack time to reduce the vomit risk at school. One awesome thing is that Enloe Hospital is putting on a presentation next Friday on his diagnosis - Eosinophilic Esophogitis - which is the cause of his vomiting -- and since it is a fairly new diagnosis, it is not well known or well understood by doctors, or anyone in James' life, really... but the awesome thing is that I already have the school nurse, his teacher, his OT, and a nurse from playcare interested in going to the presentation!! Woo-woo!! Now I just need to bring a flyer for it to his pediatrician's office, and I think I've covered all my bases!! So, after that, hopefully more people in his life will understand him better and be more of an advocate for him in that area! Unfortunately, I am going to be in San Francisco with James that day at Spina Bifida clinic, so I won't be attending :-(
We have been going through a scary time with James lately as we are convinced that he is having tethered cord issues and rapidly losing function that he once had. Lately, he is combat crawling again, which means that he is down on his belly and just pulling himself with his arms to get around. He still CAN crawl on hands and knees, but he only does it if he is reminded to use hands and knees, and he struggles a lot more than he used to. He is very, very wobbly. He is not climbing like he used to, cannot climb into his wheel chair like he used to, cannot pull to stand like he used to, and cannot take a step with his right leg like he used to. His right leg has always been his stronger leg, and now it does almost nothing :( Both of his feet are turning in SO much, and they never were bad at all. Please pray for him as we talk with doctors, and as his therapists make their reports for his neurosurgeon over the next few days. Pray for wisdom for us as parents as we navigate this thing called parenthood to a child with special needs. We feel helpless and fearful, even though we know that God is sovereign over the situation. It is difficult to remember that in each of those moments throughout our day when life feels out of control.
As for an update on the nursing thing, I have called every single nurse on the list of contacts that I got in the mail, and half of them have disconnected numbers or are no longer doing in-home nursing, or they are doing it but they already have a full time schedule with other families... I have yet to pin down a time to talk with my neighbor, believe it or not!! Actually, it doesn't surprise me, since we are both mommies to needy kids, and it's not like we have all the free time in the world to sit and chat! But I do want to make that a priority soon!! We have a friend who is a nurse, and I SO wish that she could be James' in-home nurse, but there are many hurdles that I can foresee for that to happen... BUT I am still making that my prayer, because I know that our God is great at overcoming hurdles for us! After all, He has overcome the world!!
I spoke to a lady on the phone today for over an hour about stem cells. She is a mommy to a three year old girl with Spina Bifida, who raised the funds to take her daughter to China for stem cell treatments, but when they got there, they found out that, due to her blood type, she was unable to receive the treatments. This woman knew a lot about stem cells and how they work in the body, and I learned SO, SO much just in the hour that we spoke today. I am excited for James' future after talking to her, and I do believe now more than ever that stem cells can do wonders in the body! The difficult part is getting the treatments at all, and also getting them in the way that would be most beneficial for our kids. There are a ton of legal and political and all kinds of crazy factors that are driving the stem cell research in our country and in our world (or lack-therof, I should say). But I was inspired today. And educated. And that is worth something!
That's enough for now....
signing off,
Lynae
3 comments:
There is a new determination that Im seeing.
It is like that song that says "Saddle up your horses! Weve got a trail to blaze!
Im proud of you Lynae!
I have a friend that is raising money to take her son with cerebral palsy to germany for stem cell treatment. I'm excited to see how it goes. I'm hoping it will make me a believer!
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