Isaac's IEP meeting is scheduled for next Wednesday. I just can't believe it's that time already, but next month is his birthday. How is that possible? Since Isaac was in survival mode for the first 3 years of his life and he's staying healthy more often, I feel as if I can talk about more goals for him. His therapies are all home based...he has 2 PT's, 2 OT's, a speech therapist and a teacher. Most of them are from the school district and a couple of them are from private therapy. Some days I just want to pull my hair out when the doorbell keeps ringing throughout the day. There are people in my house all the time, including the nurses. Aaaaaah! I just gave up on putting my face on and getting out of my pajamas....they've all seen me at my worst!
The teacher and I are discussing the possibility of him attending a classroom that has other medically fragile preschool kids for just 1 or 2 days a week during the summer. We have to get the Dr's approval for him to go there because awhile back we tried getting his approval and he said no way! That was when he was getting way more respiratory illness though.
Can you believe he's only been to the ER and to an outpatient procedure all winter and not 1 hospital admit! Last year he spent a total of 6 weeks in the PICU......not fun! I have to say, when they sent us home with that dreaded bi-pap last winter I swore that I would just put it away in my closet. I was upset that we would have to get attached to 1 more thing. Then after discovering that his co2 levels were up the roof, we tried using it at night. It has made such a difference in his overall respiratory status. Room air during the day, not as many pneumonia's, he recovers from a cold quicker....the list goes on.
No sweet pictures today, I thought I would quickly post because my daughter has a yucky virus and a fever. I thought Isaac was getting a cold, but he's doing good now. I'm trying to take care of them both and keep her away from her brother. Pray that the rest of us stay well!
Tuesday, March 22, 2011
Wednesday, March 16, 2011
Finally.....
Last night Isaac had a spa day with Mom. He was cooperating for me this time so I cut his hair short. Now he doesn't have the curly locks and it's weird seeing him with straight hair!
After 2 months of training and fill-ins it looks like we have finally arrived with the home nursing situation. There's a nice nurse trained for Mon, Tues mornings and another for Wed, Thurs, Friday mornings. Autumn approved of the nurse who came over yesterday and told me that she was "awesome." Getting big sisters approval is very important!
After 2 months of training and fill-ins it looks like we have finally arrived with the home nursing situation. There's a nice nurse trained for Mon, Tues mornings and another for Wed, Thurs, Friday mornings. Autumn approved of the nurse who came over yesterday and told me that she was "awesome." Getting big sisters approval is very important!
Wednesday, March 9, 2011
Big Boy!
This week Isaac went to the Endocrinologist for his hypothyroidism and he weighed in at close to 30 pounds with his clothes on. I don't know how accurate the scale was though because they weighed me and then they weighed me again while holding him. Apparently he's too big for the baby scale.
He used to be 30 inches tall for a very long time, but now he's a whopping 32 inches tall. He's still extremely short for someone his age, but that's OK because he's just going to be the little man;)
Today his PT came over and brought us a gait trainer to try out. We get excited for him every time he moves a foot forward. I posted some of these pics on his FB page.
Whoa, what's this thing?
One foot in front of the other.....
He used to be 30 inches tall for a very long time, but now he's a whopping 32 inches tall. He's still extremely short for someone his age, but that's OK because he's just going to be the little man;)
Today his PT came over and brought us a gait trainer to try out. We get excited for him every time he moves a foot forward. I posted some of these pics on his FB page.
Whoa, what's this thing?
One foot in front of the other.....
Friday, March 4, 2011
Just A Little Something I Started.....
A few people know about a support network I started organizing back in January where I meet with Moms just like me who have extraordinary children. Most of them have special needs children who have been through countless hospitalizations or surgeries. They may need feeding tubes, oxygen or ventilator support. Some of them have experienced the long hospital stays and tubes and now their children are doing great! Those are very valuable people for this group....someone who has truly been through it and can live to tell about it.
An inspiration.
What I wanted was an opportunity for Moms to take a break for an hour or 2 and talk with others who truly "get it." Sometimes the conversations get deep, but mostly there is a lot of laughter involved.
Did you know that it's possible to laugh when you have a special needs child with medical needs?
Actually, I think that we laugh more often than most parents because it's a daily necessity. Their has been lots of brainstorming involved, promoting etc. So far it's been an experience. Of course community is something I've learned is a necessity after blogging with amazing Moms who have been there too! I love, love, love this poem that pretty much sums up what it's like to meet with others who have been through more than we ever imagined.....
To You, My Sisters
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
An inspiration.
What I wanted was an opportunity for Moms to take a break for an hour or 2 and talk with others who truly "get it." Sometimes the conversations get deep, but mostly there is a lot of laughter involved.
Did you know that it's possible to laugh when you have a special needs child with medical needs?
Actually, I think that we laugh more often than most parents because it's a daily necessity. Their has been lots of brainstorming involved, promoting etc. So far it's been an experience. Of course community is something I've learned is a necessity after blogging with amazing Moms who have been there too! I love, love, love this poem that pretty much sums up what it's like to meet with others who have been through more than we ever imagined.....
To You, My Sisters
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
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