Sunday, April 19, 2009
good times
Today my best friend Christine went back home to Winnipeg. We had a good time,even though alot of it was spent at the docs office. We are so glad she came and we had ALOT of laughs.We miss her so much already,but she will visit again,hopefully next winter. I posted pics earlier today. Well Im off to bed,neurosurgery appt tomorrow afternoon.
Tuesday, April 14, 2009
home and abdominal pain
Maddy has been home since Friday afternoon. She still was having headaches and poor appetite,but her doc hoped she would do better at home.She didn't so I put her on diamox yesterday morning and she hasnt complained of headaches and appetite came back and she ate and ate and ate. She also has been complaining of stomach pain for atleast 7-8weeks if not more. I thought at first it was due to antibiotics then we thought she was just nauseous due to all the meds but last week she told me it hurts her and is complaining more each day. She complains many times a day.She is not constipated and has no fever. I let neurosurgery know and her docs said she has never seen a case of a shunt causing abdominal pain and to take her to the pediatrician. I took her today but saw a new doc as hers wasnt there and she order labs,urinalysis,abdominal xray and ultrasound. Well so far all has come back normal,so I called neurosurgery back and asked them now what the pain is still there and she is also doing well on diamox,so now what. They told me to stop the diamox by Wednesday and hopefully she will just get better. I told them that Maddy says her tummy feels better when she takes a deep breath,she complains every 5-15 minutes and today has been crying when shes hurting. They told me its not her shunt or the tubing and to take her to the ER is she gets that bad. i called her neurosurgeons office this morning and told them enough is enough I want all the programmable stuff out and the old shunt system in.I will keep you all posted.
Monday, April 13, 2009
HAPPY EASTER!
Yesterday I decided to try and see how Maddy would do on Diamox as she wasnt any better once we left the hospital. She did great. She ate and ate and ate. She drank well and didnt complain much at all of a headache. The only pain she kept saying she had was stomach pain,so I called neurosurgery a bit ago and told them. So I am waiting for them to call back and tell me whats next
Friday, April 10, 2009
going home after 28 days
We went home today from the hospital,well we are staying with my parents. They wanted me to take her home and see how she does for a few days. So far her appetite is about the same. Dr. Woodward told us she wants to try and see if she can adjust to the low pressure headaches,but also said we can bring her back if she gets worse.She is think of taking out the programmable shunt and putting in the old non-programmable type. So I am glad we are home in the meantime so we can enjoy easter and have some fun.
Thursday, April 9, 2009
we are going home tomorow
We are supposed to be going home tomorrow. The migral didn't help Maddy at all,so the neurologist is gonna put her on Topamax instead of Lamictal as it can help with headaches too. Dr. Woodward is certain the shunt is ok,although I am not convinced. I am hoping she does better at home. If not we can bring her back and since she has the port now its so much easier,no more pokes.
My best friend arrived today from Winnipeg so I am soo excited and it will be nice to spend time together and not be here.
Joe called and asked how Maddy was doing and I told him. I said we are going home tomorrow,but I we will be stayng with my parents and he acted all surprised. I told him well you want the divorce and you cant stand me so why be around. He didnt say anything and said see you later. Well Im gonna go for now.
My best friend arrived today from Winnipeg so I am soo excited and it will be nice to spend time together and not be here.
Joe called and asked how Maddy was doing and I told him. I said we are going home tomorrow,but I we will be stayng with my parents and he acted all surprised. I told him well you want the divorce and you cant stand me so why be around. He didnt say anything and said see you later. Well Im gonna go for now.
Wednesday, April 8, 2009
results
The EEG showed hot spots which means they say seziure activity,neurologist said it recorded focal motor seizures. So she has that type as well as complex partial seizures. The neurologist is gonna put her on DHS for a day or so to see if that help with the headaches. I am not convinced it's not a shunt issue,Dr. Woodward says she is sure it isnt. I guess time will tell on that. The neurologist is considering taking her off Trileptal and adding Lamictal. If everything goes well we can go home on Sunday.
The easter bunny made a visit to the hospital so Maddy and me were interviewed by the local news. I will try and post some pics soon.
Also Joe wants the divorce I don't want it but its for the best. He isnt the husband or father I know he can be if he tried. He got mad when I posted my status on FB,cause his relatives started calling him. I will call them tomorrow incase they want the truth.
It basically comes down to how I never do aything for him,not supportive of him,i refuse to get a job. He doesn't realize I cant work with Maddy in the hospital. Well I have a huge headache so Im gonna try and lay down. Night
The easter bunny made a visit to the hospital so Maddy and me were interviewed by the local news. I will try and post some pics soon.
Also Joe wants the divorce I don't want it but its for the best. He isnt the husband or father I know he can be if he tried. He got mad when I posted my status on FB,cause his relatives started calling him. I will call them tomorrow incase they want the truth.
It basically comes down to how I never do aything for him,not supportive of him,i refuse to get a job. He doesn't realize I cant work with Maddy in the hospital. Well I have a huge headache so Im gonna try and lay down. Night
wow
So I get a call from my husband last night saying he wants a divorce. He said he never loved me and feels nothing for me now. HE said he wish he never met me let alone married. I knew things weren't working but why be so mean. He has good timing cause we are still in the hospital. So thats how my night went.
I am waiting for the docs to come around. I will post an update later.
Tuesday, April 7, 2009
rainy day
It poured today and we enjoyed looking out the window watching the rain and helicopter. The EEG stopped around 5:30am. I slept for 8 hrs straight last night,felt so good. The took off all the wires and glue and I washed Maddy's hair. Dr. Magram (old neurosurgeon) cam by and said they are waiting for the results from the videoeeg. I asked him about putting Maddy on diamox and he said they will hold off on that as it is an anticonvulsant just in case neurology wants to do more testing. Dr. Woodward comes back tomorrow so I am anxious to get her take on this.
Maddy's friend Nicolas went home today I exchanged phone numbers and email address with his mom today so we can keep in touch. Nicolas and Maddy have very similiar medical conditions and we always seem to be in the hospital at the same time. I hope he is gonna start having some pain relief soon. Well I am gonna get ready for bed. I will post an update tomorrow. Night
Monday, April 6, 2009
24 days and eeg
So today Dr. Magram (Dr. Woodward is still gone) caled Maddy's neurologist Dr. Ehhrich about Maddy getting a VideoEEG. So they are currently doing one. It was started at around 4:30pm and will stop around 9 am. i also asked the N.P. for neurosurgery about putting Maddy on some diamox and she was real heistant,so I am hoping tomorrow they will do it. That's all I know so far. I will post an update tomorrow.
Sunday, April 5, 2009
Thoughts of a Mom
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 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 psychiatry.
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 on 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.
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 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 psychiatry.
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 on 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.
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Thursday, April 2, 2009
long day
Today it has been such a long day. CT @8 am.Maddy wasn't allowed to have anything to eat or drink after 6 for mediport surgery this afternoon. Then around 9:30 J called pissed cause the internet and cable got cut off. I asked him well what do you want me to do about it. I can't pay it. I told him I am in the hospital with Maddy. He said "oh well thats a convienent excuse"I told him its not an excuse it's reality and he needs to accept the fact that I can't work when Maddy is in and out of the hospital all the time. He said well you need to realize we made not have a place to live" and I told him yes I do" and he hung up. He didnt even call about her surgery. Makes me so mad/sad. I'm over it.I have been praying hard for God to point me in the right direction for a job so the girls and I can be on our own. I need to have some faith I guess.
Maddy's surgery went well to put in the mediport,took about an hr. Its gonna take some time for me and Maddy to get used to it.But I am so glad she has it now. I talked to Dr. Woodward today,she said she will be gone for a few days and thinks Maddy needs to have her shunt adjusted another time and see how she does. I am not convinced that is the problem as she is still having the seizures in her foot but luckily they have been small,under a minute. So I guess it will take some time as she said to figure this out.
Wednesday, April 1, 2009
rest of the day
I went to target bought twilight and am anxious to watch it. Dr. Woodward decided Maddy would benefit from a mediport. No more pokes for an IV. It just needs to be flushed every 3-4 weeks and you use numbing cream before you access the port. So they will be putting that in tomorrow afternoon. Dr. Woodward also said she will figure this out piece by piece,even if it takes awhile. Im glad she is on top of it even though I have doubts at times.
On another note Joe is in denial that Maddy has anything wrong with her and expects me to get a full time job. He doesn't consider taking care of the kids and apartment a full time job let alone taking care of a special needs kid. He only contributes as little financially, emotionally.He works only a few hours on Sundays and goes to school M-F,but he has many hours left in the day after school when he could work. He says all the money he makes is his. So that makes me virtually broke. His dad refuses to help me and the girls,and he can so afford to. His step mom told me if and when I decide to get my own place they will help me and the girls,but I doubt they mean that. I don't know what more I can do to make it. He doesn't want better for me and the girls. I have been trying so hard to find a job but its even harder when me and Maddy are in and out of the hospital all the time. He visits maybe an hour a day,but not everyday. When he does visit he complains about taking Maddy for walks to see her friends. He is the only person who thinks I should be working full time even with Maddy in the hospital. Well his dad thinks the same way. He says my mom can stay with her or have nurses keep an eye on her. Also he says he will come out here while I work,more like he will fall asleep for hours instead. I am soo tired of all this with him. I am basically a single mom,I figure I may as well be one. I want out,but since I dont have a job it makes things even more difficult and if I did then what. Our lease is up in August,when we do get out of here I'm gonna tell him stuff has to change(and stay changed) he has to wake up and support me and the girls, realize that I can't work and work hard to provide a better life for me and the girls or it's over.
Well,Im off to watch Twilight.
i must blog
I have decided to start a blog. As you know Maddy is still in the hospital. This is day 19. Maddy woke up with a screaming headache. She drank a bit of gatorade for the nurse. I still think she needs an IV. I am very worried about the seizures as well. Neurosurgery is gonna call her neurologist,but I know what he will say already,"It's a neurosurgery issues,she doesn't have seizure when her shunt is ok." I agree. Well I am gonna run to target for a few neccesities. I got a rejection letter from my interview last week,but it's for the best as we are still here. I will blog more later.
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