New here with a 6 day old
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: New here with a 6 day old
Kate
I won't pretend to know the medical reasons for not picking up a child under the arms. But my mother was told that immediately after birth and I am 65.
No one ever picked me up that way... I don't even like it when my doctor checks my underarm at exams. I was not able to pick my own children up like that because of my arm. But,I would never allow anyone to pick up my kids that way because I assumed everyones underarms were as sensitive as mine. I am sure that different doctors have different opinions.
Kath (adult/obpi)
I won't pretend to know the medical reasons for not picking up a child under the arms. But my mother was told that immediately after birth and I am 65.
No one ever picked me up that way... I don't even like it when my doctor checks my underarm at exams. I was not able to pick my own children up like that because of my arm. But,I would never allow anyone to pick up my kids that way because I assumed everyones underarms were as sensitive as mine. I am sure that different doctors have different opinions.
Kath (adult/obpi)
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: New here with a 6 day old
Hi Diane,
Where in the Detroit area do you live?? I am from MI and living just outside of Toronto but my entire family still lives in the metro Detroit area.....my parents are in Rochester Hills, brother in White Lake, grandparents in Warren, etc. I visit every now and then and if you ever have any questions feel free to contact me directly! I have two children, my youngest is now 13.5 months and she has a left brachial plexus injury as well.
Congrats on your baby girl:)
Take care,
Shellie
Where in the Detroit area do you live?? I am from MI and living just outside of Toronto but my entire family still lives in the metro Detroit area.....my parents are in Rochester Hills, brother in White Lake, grandparents in Warren, etc. I visit every now and then and if you ever have any questions feel free to contact me directly! I have two children, my youngest is now 13.5 months and she has a left brachial plexus injury as well.
Congrats on your baby girl:)
Take care,
Shellie
Re: New here with a 6 day old
Congrats on your new baby! God finding out somthing is wrong is devastating. The day she was born I didn't know anything was wrong- I treasure that day because the next day when they told me my whole world came crashing down. I remember-Chloe was born 13 weeks ago w/ BPI to her right arm. When she was born she had finger movement-strong and semi weak wrist movement. Today she is 13 weeks old and has hand to mouth against gravity and is starting to have over the head external rotation on her back. We are so relieved that movment came back but I am scared that in the future this will be a problem. Anyway-get to an OT/PT as soon as possible. Do range of motion exercises like crazy -we still do them 5 times a day 10 reps each holding each stretch for 30 seconds. We see Dr. Park (BPI specialist) in St. Louis every month. It is important to go as soon as you can so they can start monitoring your baby. Surgery can only be done in a certain time frame. DO NOT WAIT AND SEE-that is my biggest personal opinion. Everyone told me to wait and see and soon I found out that was not a good idea.
This is very emotionally exhausting and know that you can come hear whenever you need to and ask any question. There are a variety of experiances here. Children who have suffered severe injuries, moderate injuries and minor injuries. No child is the same. Good luck and know with time things get easier.
This is very emotionally exhausting and know that you can come hear whenever you need to and ask any question. There are a variety of experiances here. Children who have suffered severe injuries, moderate injuries and minor injuries. No child is the same. Good luck and know with time things get easier.
Re: New here with a 6 day old
Kath,
Keep in mind, they also used to tell parents to pin the arm to the chest for months on end, and used to cast the arm in abduction and external rotation so long that abduction and external rotation contractures were commonplace. They also probably told your mom that "nothing could be done" about your injury, am I right? They certainly didn't do nerve surgery commonly back then...
Until 20 or 30 years ago, there were quite a number of bizarre theories about BPI and subsequent problems that came from it. I've seen articles from the 30s that claim that the injury is due to dislocation of the shoulder during birth. If you have the wrong idea about the cause of the injury, you are certainly going to have some wrong ideas about how to treat it. There is a tremendous amount of inertia in medicine, and sometimes "common wisdom" persists long after understanding has significantly improved. I'd venture to guess that you could have sensory integration problems simply because you were never touched under your armpits. Whose to say which came first...
Kate
Keep in mind, they also used to tell parents to pin the arm to the chest for months on end, and used to cast the arm in abduction and external rotation so long that abduction and external rotation contractures were commonplace. They also probably told your mom that "nothing could be done" about your injury, am I right? They certainly didn't do nerve surgery commonly back then...
Until 20 or 30 years ago, there were quite a number of bizarre theories about BPI and subsequent problems that came from it. I've seen articles from the 30s that claim that the injury is due to dislocation of the shoulder during birth. If you have the wrong idea about the cause of the injury, you are certainly going to have some wrong ideas about how to treat it. There is a tremendous amount of inertia in medicine, and sometimes "common wisdom" persists long after understanding has significantly improved. I'd venture to guess that you could have sensory integration problems simply because you were never touched under your armpits. Whose to say which came first...
Kate
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: New here with a 6 day old
Kate
I also knew the cause of my injury it was the doctor who delivered me and he did not do it properly. I was told as a child he used too much pressure and damaged my nerves. I never had any of those old notions. I did not have good care after my initial pediatric or did the medical profession know the full extent or impact this injury makes on our bodies nor did they have any idear of the secondary injuries... But then again it is still that way and that is what I am most appauled about. I am so glad I was born in New York and had access to such good medical care and treatment in the "good old days". My mother often spoke of Prof. Cornel who was the doctor in charge of my care and treatment.
My arm was not pinned and ROM began when I was 2 weeks old. I had massage with warm Olive Oil and then began wearing a brace that was in a traffic cop position palm facing my ear that brace was worn for 11 months and off for daily therapy sessions and then back on to support my arm and shoulder (ugh). I am quite surprised at the therapy I received at that time. I also noticed many of the things used today I used only different equipment and it was all part of what I considered play therapy. Actually everything I did had therapy in my mothers mind including assigned tasks for each hand so that I would use the hand I forget I have. I only use my hand for the automatic assigned tasks I was forced to use my arm/hand to do. I think I have sensory integration because I have a severe injury and nothing could have changed that. I realize I seemed to be an experiment at that time but New York Hospital was ahead of its time. The brace I wore was designed by the doctor and made there it was soft velvet, leather, and cloth. I only threw it out a few years ago. We had another child in the neighborhood with my injury and he wore a cast and that left his arm much smaller and bent at the elbow. After I was married I met another man (who would not talk about his injury) his brother told us he was in a cast as a child and his arm was bent at the elbow also. My arm is a hanger and I move from the shoulder thanks to scapular winging. There was a surgery offered to my Mother and she refused because of the danger involved. I think with global injury sensory integration is defiantly related to the initial injury.
I had to play with mud pies, clay learned to touch all sorts of things but still hated the feel of material. I had to squeeze chop meat with eggs in it etc... I was much older when I realized that I was helping in the kitchen when I was so young because of my injury. I also have T1 that will make flashing lights and over head light annoying at least that's what other adults with obpi have complained about too!
I walked with books on my head I took tap, toe, ballet, piano, acrobatics even drama lessons to improve my posture and balance. I hated piano but they felt it could get my fingers to move. I have a very good sense of balance and was able to do one handed cartwheels from a very tender age... of course I was also able to fool the instructors and pretend to place my right hand down... I could never support my self using my right hand. We had a bar across the door ways and when I was a little older we practiced hanging with two hands and I could for awhile. I actually realized that my treatments were very advanced for the 1940's and credit the doctors and my Mother's gut instincts with the fact that I move so well and can type with two hands.
Most adult obpi regardless of th extent of their personal injury do not like their arms touched it is very sensitive and as doctor Belzberg said at Camp touching our arms often sends the wrong message to our brains. I don't believe that sensory integration has anything to do with the sensitivity of my arm pit I think it is a bpi thing and has always been that way... that is the least of my sensory issues. Which by the way other than here most of my friends/family don't even know about. I never talk about them and just avoid what I find annoying. I love working crafts with many materials that require different textures including clay and my potters wheel.
I also noted that most people with bpi injury cannot use crutches not just obpi and not just because of weight bearing but their armpits are sensitive. Maybe its the path the nerves take when healing without surgery. I think I have been able to "hide" my injury because of my treatments and therapy was part of my daily living until I was about 13 and refused to have anyone touch my arms but then I began to play basketball.
Kath
I also knew the cause of my injury it was the doctor who delivered me and he did not do it properly. I was told as a child he used too much pressure and damaged my nerves. I never had any of those old notions. I did not have good care after my initial pediatric or did the medical profession know the full extent or impact this injury makes on our bodies nor did they have any idear of the secondary injuries... But then again it is still that way and that is what I am most appauled about. I am so glad I was born in New York and had access to such good medical care and treatment in the "good old days". My mother often spoke of Prof. Cornel who was the doctor in charge of my care and treatment.
My arm was not pinned and ROM began when I was 2 weeks old. I had massage with warm Olive Oil and then began wearing a brace that was in a traffic cop position palm facing my ear that brace was worn for 11 months and off for daily therapy sessions and then back on to support my arm and shoulder (ugh). I am quite surprised at the therapy I received at that time. I also noticed many of the things used today I used only different equipment and it was all part of what I considered play therapy. Actually everything I did had therapy in my mothers mind including assigned tasks for each hand so that I would use the hand I forget I have. I only use my hand for the automatic assigned tasks I was forced to use my arm/hand to do. I think I have sensory integration because I have a severe injury and nothing could have changed that. I realize I seemed to be an experiment at that time but New York Hospital was ahead of its time. The brace I wore was designed by the doctor and made there it was soft velvet, leather, and cloth. I only threw it out a few years ago. We had another child in the neighborhood with my injury and he wore a cast and that left his arm much smaller and bent at the elbow. After I was married I met another man (who would not talk about his injury) his brother told us he was in a cast as a child and his arm was bent at the elbow also. My arm is a hanger and I move from the shoulder thanks to scapular winging. There was a surgery offered to my Mother and she refused because of the danger involved. I think with global injury sensory integration is defiantly related to the initial injury.
I had to play with mud pies, clay learned to touch all sorts of things but still hated the feel of material. I had to squeeze chop meat with eggs in it etc... I was much older when I realized that I was helping in the kitchen when I was so young because of my injury. I also have T1 that will make flashing lights and over head light annoying at least that's what other adults with obpi have complained about too!
I walked with books on my head I took tap, toe, ballet, piano, acrobatics even drama lessons to improve my posture and balance. I hated piano but they felt it could get my fingers to move. I have a very good sense of balance and was able to do one handed cartwheels from a very tender age... of course I was also able to fool the instructors and pretend to place my right hand down... I could never support my self using my right hand. We had a bar across the door ways and when I was a little older we practiced hanging with two hands and I could for awhile. I actually realized that my treatments were very advanced for the 1940's and credit the doctors and my Mother's gut instincts with the fact that I move so well and can type with two hands.
Most adult obpi regardless of th extent of their personal injury do not like their arms touched it is very sensitive and as doctor Belzberg said at Camp touching our arms often sends the wrong message to our brains. I don't believe that sensory integration has anything to do with the sensitivity of my arm pit I think it is a bpi thing and has always been that way... that is the least of my sensory issues. Which by the way other than here most of my friends/family don't even know about. I never talk about them and just avoid what I find annoying. I love working crafts with many materials that require different textures including clay and my potters wheel.
I also noted that most people with bpi injury cannot use crutches not just obpi and not just because of weight bearing but their armpits are sensitive. Maybe its the path the nerves take when healing without surgery. I think I have been able to "hide" my injury because of my treatments and therapy was part of my daily living until I was about 13 and refused to have anyone touch my arms but then I began to play basketball.
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
-
JessicasMom
- Posts: 214
- Joined: Thu Sep 18, 2003 4:59 pm
- Injury Description, Date, extent, surgical intervention etc: 10 year old Jessica born on 9/6/03 with a LOBPI.
Mostly recovered, no surgery, still has remaining functional deficits
including no active external rotation. - Location: The Woodlands, TX
Re: New here with a 6 day old
Hi Tess,
I'm so sorry to hear about your daughter's injury. I have a 22 month old little girl who also has a left brachial plexus injury.
The most important things you should know are to learn how to do range of motion exercises at every diaper change, get her started in therapy (hopefully with a pediatric therapist experienced with BPI), handle her properly: no lifting her under the arms or by the arms and support her arm (don't let it dangle).
Most states have some sort of Early Intervention program where you can get therapy services either at no cost or a reduced income-based costs. You should also have her evaluated by a neurologist and BPI specialist.
Today my daughter, Jessica, is nearly fully recovered and her injury is unnoticeable, but every injury is different. If you have any questions,
you can email me at: shellie1@patmedia.net
Most of all, don't forget to enjoy your baby! Give that little baby lots of love and kisses and don't get overwhelmed by the injury! It's hard at first, but infancy is such a precious time. Congratulations on the birth of your baby girl!
Michelle
I'm so sorry to hear about your daughter's injury. I have a 22 month old little girl who also has a left brachial plexus injury.
The most important things you should know are to learn how to do range of motion exercises at every diaper change, get her started in therapy (hopefully with a pediatric therapist experienced with BPI), handle her properly: no lifting her under the arms or by the arms and support her arm (don't let it dangle).
Most states have some sort of Early Intervention program where you can get therapy services either at no cost or a reduced income-based costs. You should also have her evaluated by a neurologist and BPI specialist.
Today my daughter, Jessica, is nearly fully recovered and her injury is unnoticeable, but every injury is different. If you have any questions,
you can email me at: shellie1@patmedia.net
Most of all, don't forget to enjoy your baby! Give that little baby lots of love and kisses and don't get overwhelmed by the injury! It's hard at first, but infancy is such a precious time. Congratulations on the birth of your baby girl!
Michelle
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: New here with a 6 day old
Kath - I'm not sure what you mean in this sentence?
"I also have T1 that will make flashing lights and over head light annoying at least that's what other adults with obpi have complained about too!"
Does this mean that you have a T1 injury and that there's a connection with that and the light? My little one has a problem with overhead lights so when I read this it got my attention. Can you explain this more? Thank you.
"I also have T1 that will make flashing lights and over head light annoying at least that's what other adults with obpi have complained about too!"
Does this mean that you have a T1 injury and that there's a connection with that and the light? My little one has a problem with overhead lights so when I read this it got my attention. Can you explain this more? Thank you.
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: New here with a 6 day old
Guest
I know that I have an issue with overhead lighting. I hate it and always want it out expecially if it's on the right side.
I complained about it to Nancy one day and she also has the same complaint of course we both thought we were the only ones that were annoyed by it. I don't like movies that are dark and have flashing lights. I am a big Star Wars fan. I love animals but the circus with all the spotlights flashing was not a place I like to go as a kid and I let my husband take the kids.
I constantly tell my husband to turn off the light over head to the point where he gets annoyed... because to him it's no big deal. I have a daughter with vertigo she needs more light and I don't like bright light. One eye doctor told me it was because my pupil dilated so slowly. Of course doctors know very little about the various small annoying things involved with bpi because there are no studies on the impact this injury makes on our bodies or our comfort and life experiences. I think if you asked them they would not realize that this is something that is connected. Nancy and I both have T1 injury. You could ask your doctor if it is possible that adjusting to light is a problem for someone whith Horner's injury.
Kath
I know that I have an issue with overhead lighting. I hate it and always want it out expecially if it's on the right side.
I complained about it to Nancy one day and she also has the same complaint of course we both thought we were the only ones that were annoyed by it. I don't like movies that are dark and have flashing lights. I am a big Star Wars fan. I love animals but the circus with all the spotlights flashing was not a place I like to go as a kid and I let my husband take the kids.
I constantly tell my husband to turn off the light over head to the point where he gets annoyed... because to him it's no big deal. I have a daughter with vertigo she needs more light and I don't like bright light. One eye doctor told me it was because my pupil dilated so slowly. Of course doctors know very little about the various small annoying things involved with bpi because there are no studies on the impact this injury makes on our bodies or our comfort and life experiences. I think if you asked them they would not realize that this is something that is connected. Nancy and I both have T1 injury. You could ask your doctor if it is possible that adjusting to light is a problem for someone whith Horner's injury.
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: New here with a 6 day old
Michelle,
"Don't let the arm dangle" can easily be converted into a pinning recommendation, "no lifting under the arms" does *not* necessarily apply to all children at all ages (just as admonitions against holding the child's hand for balance do not apply in all cases).
Perhaps we should try to acknowledge the idiom "every child is different" when giving these *medical* recommendations about how to handle the child and the daily management of the injury? Rather than instruct a new parent when you've never seen their child, urge them to see a BPI specialist and to follow their specialist's instructions! Make suggestions such as "Ask your doctor how to perform range of movement exercises" and "You may need to be careful how you pick up and handle your child, ask your doctor" rather than blanket recommendations that do not necessarily apply.
Much of the common advice I see in these threads to new mothers runs contrary to what 5 separate doctors told us regarding our child. I think that is enough to suggest that they do not always apply to every child.
Kate
"Don't let the arm dangle" can easily be converted into a pinning recommendation, "no lifting under the arms" does *not* necessarily apply to all children at all ages (just as admonitions against holding the child's hand for balance do not apply in all cases).
Perhaps we should try to acknowledge the idiom "every child is different" when giving these *medical* recommendations about how to handle the child and the daily management of the injury? Rather than instruct a new parent when you've never seen their child, urge them to see a BPI specialist and to follow their specialist's instructions! Make suggestions such as "Ask your doctor how to perform range of movement exercises" and "You may need to be careful how you pick up and handle your child, ask your doctor" rather than blanket recommendations that do not necessarily apply.
Much of the common advice I see in these threads to new mothers runs contrary to what 5 separate doctors told us regarding our child. I think that is enough to suggest that they do not always apply to every child.
Kate
Re: New here with a 6 day old
Hello, Diane. Congratulations on your sweet baby girl! Welcome to the board. It's great that you found us, but I'm sorry you had to be here. Many of us here didn't have or find such a support as this for quite a while after our babies are born so you're a big step ahead. I see you already got some great advice here. I'll see if I can add anything.
Firstly, as you start your research, you'll read that most OBPIs recover within a couple of months after birth. Sooo, hopefully, Tess will fall into that category. It is encouraging that she has some hand and wrist movement even though it's not strong yet.
Did a PT or OT show you how to do ROM (range of motion) exercises at the hospital? If not, then you should make an appt. with a PT or an OT asap so that you're doing all the exercises you s/b doing everyday throughout the day. At that age, we did them at every diaper change (my daughter, Nicole, who has a LBPI is 6 y.o. now).
It's also good to start compiling a list of drs. to consult with (such as a local Ped. Neurologist and a couple of BPI Specialists/surgeons -- I always recommend getting at least 2 or 3 different opinions). We've seen Dr. Nath in TX and Dr. Waters in Boston and have had great experiences with both; Dr. Nath performed our daughter's surgeries (she's ahd four). You might not getting in to see a specialist until Tess is over 2 months, but it might take a while to get an appt. so that's why it wouldn't hurt to start making calls soon, just to get things scheduled.
As you see, this board is full of diversified opinions (I hope this thread hasn't confused you too much!!), which as long as it's done peacefully can be good for learning. I've learned so much from this board! Just always remember to put things into perspective in that while many parents here have become somewhat experts, none of us are BP Specialists / surgeons. I find that the info. here helps people to know what questions to ask their dr. b/c often drs. don't give you info. unless you ask specific questions (and the problem with that is you don't always know what to ask).
You asked about disability and I agree with Krista's advice of waiting on that. As long as you have health insurance benefits, the expenses shouldn't get too bad at least at this point. We never got gov't disability b/c I inquired about the income requirement and ours was too high, which meant that it didn't matter what the disability was since the income was the primary factor.
What you can do for assistance at this time is to contact your early intervention (EI) program. They provide a PT and / or an OT to come to your home and do therapy there and teach you how to do it on the days that they're not there. It's very convenient b/c they do the therapy in your home so you don't have to make frequent visits to the hospital or therapy center. There's a great federal site where I found this info. on your state's EI program:
Programs for Infants and Toddlers with Disabilities: Ages Birth through 2
Vanessa Winborne, Part C Coordinator
Michigan Department of Education
Office of Special Education and Early Intervention Services
P.O. Box 30008
Lansing, MI 48909
(517) 335-4865; (800) 327-5966
E-mail: WinborneV@mi.gov
Web: www.earlyonmichigan.org/
The link is: http://www.nichcy.org/stateshe/mi.htm (that takes you directly to a state resource sheet with various organizations and contact names and numbers / email addresses. Keep this list handy. You'll find a "PTI" (Parent Training and Info. Center) which might be very helpful to you in navigating the system. BTW, you'll prob. need a referral from the Pediatrician to set up the intial EI evaluation.
It's interesting that you're looking into finding a craniosacral therapist. I don't see that come up on the board often, although I have a few times. It's surprising to see the term come up with such a new mom. We've never had a craniosacral therapist although I do recall good things being posted.
I'd like to point out to you to keep something in mind when you read info. on this board. Most of the people here have children with moderate to severe injuries. I think that's basically b/c if the injury has healed or even had close to a full recovery, the BPI isn't as much of an issue in those families' lives so they're not here too much or not at all. I'm sure many people never even make it here b/c their baby recovered before they started the Internet search.
You'll find a lot of helpful info. on this site esp. in the awareness section that you'll see on the home page. Another very helpful website is www.injurednewborn.com, which was created by a Mom of a baby with a BPI.
Another thing I like to recommend to new parents (anyone who was present at the delivery) is that they make some notes about the labor and delivery, anything they remember about prenatal care, etc. and keep a log of all the medical appts. I say this b/c while it might be the last thing on your mind right now, you might possibily want to file a lawsuit against OB/hospital, etc. at some point. If you keep good notes now, it'll make it that much easier if and when the time comes. FYI, if you do file a lawsuit, they will ask if you kept a journal b/c it's very common and you'll be required to give them a copy. I'm not recommending that you file and hopefully Tess will have a great recovery and it won't even be an issue, but it's good to be prepared just in case. We did not have any plans to sue when our daughter was first born. At some point, after we realized that her injury was permanent and severe and required surgeries, we decided to sue. It's a personal decision that you don't have to make for a while.
Well, I'm done with my novel here. Enjoy your precious little baby girl and try to not worry about what the future will bring. Ask any questions you have; we're here to help you. Take care.
~Tina, bpmom@comcast.net, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. w/NOBPI "no BPI")
Firstly, as you start your research, you'll read that most OBPIs recover within a couple of months after birth. Sooo, hopefully, Tess will fall into that category. It is encouraging that she has some hand and wrist movement even though it's not strong yet.
Did a PT or OT show you how to do ROM (range of motion) exercises at the hospital? If not, then you should make an appt. with a PT or an OT asap so that you're doing all the exercises you s/b doing everyday throughout the day. At that age, we did them at every diaper change (my daughter, Nicole, who has a LBPI is 6 y.o. now).
It's also good to start compiling a list of drs. to consult with (such as a local Ped. Neurologist and a couple of BPI Specialists/surgeons -- I always recommend getting at least 2 or 3 different opinions). We've seen Dr. Nath in TX and Dr. Waters in Boston and have had great experiences with both; Dr. Nath performed our daughter's surgeries (she's ahd four). You might not getting in to see a specialist until Tess is over 2 months, but it might take a while to get an appt. so that's why it wouldn't hurt to start making calls soon, just to get things scheduled.
As you see, this board is full of diversified opinions (I hope this thread hasn't confused you too much!!), which as long as it's done peacefully can be good for learning. I've learned so much from this board! Just always remember to put things into perspective in that while many parents here have become somewhat experts, none of us are BP Specialists / surgeons. I find that the info. here helps people to know what questions to ask their dr. b/c often drs. don't give you info. unless you ask specific questions (and the problem with that is you don't always know what to ask).
You asked about disability and I agree with Krista's advice of waiting on that. As long as you have health insurance benefits, the expenses shouldn't get too bad at least at this point. We never got gov't disability b/c I inquired about the income requirement and ours was too high, which meant that it didn't matter what the disability was since the income was the primary factor.
What you can do for assistance at this time is to contact your early intervention (EI) program. They provide a PT and / or an OT to come to your home and do therapy there and teach you how to do it on the days that they're not there. It's very convenient b/c they do the therapy in your home so you don't have to make frequent visits to the hospital or therapy center. There's a great federal site where I found this info. on your state's EI program:
Programs for Infants and Toddlers with Disabilities: Ages Birth through 2
Vanessa Winborne, Part C Coordinator
Michigan Department of Education
Office of Special Education and Early Intervention Services
P.O. Box 30008
Lansing, MI 48909
(517) 335-4865; (800) 327-5966
E-mail: WinborneV@mi.gov
Web: www.earlyonmichigan.org/
The link is: http://www.nichcy.org/stateshe/mi.htm (that takes you directly to a state resource sheet with various organizations and contact names and numbers / email addresses. Keep this list handy. You'll find a "PTI" (Parent Training and Info. Center) which might be very helpful to you in navigating the system. BTW, you'll prob. need a referral from the Pediatrician to set up the intial EI evaluation.
It's interesting that you're looking into finding a craniosacral therapist. I don't see that come up on the board often, although I have a few times. It's surprising to see the term come up with such a new mom. We've never had a craniosacral therapist although I do recall good things being posted.
I'd like to point out to you to keep something in mind when you read info. on this board. Most of the people here have children with moderate to severe injuries. I think that's basically b/c if the injury has healed or even had close to a full recovery, the BPI isn't as much of an issue in those families' lives so they're not here too much or not at all. I'm sure many people never even make it here b/c their baby recovered before they started the Internet search.
You'll find a lot of helpful info. on this site esp. in the awareness section that you'll see on the home page. Another very helpful website is www.injurednewborn.com, which was created by a Mom of a baby with a BPI.
Another thing I like to recommend to new parents (anyone who was present at the delivery) is that they make some notes about the labor and delivery, anything they remember about prenatal care, etc. and keep a log of all the medical appts. I say this b/c while it might be the last thing on your mind right now, you might possibily want to file a lawsuit against OB/hospital, etc. at some point. If you keep good notes now, it'll make it that much easier if and when the time comes. FYI, if you do file a lawsuit, they will ask if you kept a journal b/c it's very common and you'll be required to give them a copy. I'm not recommending that you file and hopefully Tess will have a great recovery and it won't even be an issue, but it's good to be prepared just in case. We did not have any plans to sue when our daughter was first born. At some point, after we realized that her injury was permanent and severe and required surgeries, we decided to sue. It's a personal decision that you don't have to make for a while.
Well, I'm done with my novel here. Enjoy your precious little baby girl and try to not worry about what the future will bring. Ask any questions you have; we're here to help you. Take care.
~Tina, bpmom@comcast.net, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. w/NOBPI "no BPI")
