Hi, its me, the mom of the then 6 day old and now 9 day old
We went to our family doctor and I was very upset with him because he pretty much said since there has been no improvement in her arm, we might as well assume this is a permanant injury and start to deal with it. This seems so backwards to what I have heard and the bit I've read about it.
Is he just full of it? I need support big time now as I am completely losing it. We are in a HUGE financial crisis right now, about 2 months behind in bills and now my husband might lose his job and I can't handle anything more right now. How am I going to afford taking my little girl to all this therapy? I feel like because of stupid financial moves on my and my husbands part she won't get the help she deserves.
Hi...My daughter is 8 yrs old now..ROBPI. She's had 2 surgeries..I read your last post and noted that my daughter Dani's amount of movement and yours were the same at birth. I can't give you advice financially, as in Canada, our medical insurance is different than yours..but I do know that there are Shriner Hosp with BPI specialists that help out with people that are financially constrained. Since I'm not positive..please check on the resource info section or ask some of the American mom's here....
What I will tell you is that it's OK to be sad, mad, furious, depressed..want to lash out. It's a major shock to find out this little life you've nurtured along in your body in now injured- and most Dr's don't have a very helpful amount of info to give you. You really HAVE to face the hard facts and be as brave as you can be. It's very scary, and it's non-stop, at least for the first years of systematically doing all the steps neccessary to get as much resolution as possible..which is going to be taking her the BEST you can find/afford for physio ( keeps her arm supple and range of motion continual, as she can't do it for herself...) Pursue whatever avenue you can...I know you're overwhelmed. We have all been there. I was very, very depressed after Dani's birth. Some days all I could think about was " why, why why??!!" The best advice is to try to enjoy your beautiful little girl as much as you can...ask for lots of support from anyone that is there offering it. Trust me when I say that in time, it'll be less ouchy. You may even feel stronger as a result of having to accept this deck of cards, so to speak. I've seen people become very staunch advocates and seriously knowledgable in BPI's...Let their knowledge help guide you right now..and use this forum to vent.
It's ok to vent. I wish I could give you a hug and show you the road we've walked on the last 8 yrs. It took me a long time to be ok about it all. But when you see that your child can live with their physical limitation, mild OR severe...you'll start to see it as a limitation less and less.
Congrats on your baby..You fought so hard to bring her here...hugs..Kimba & Dani.
what state do you live in? My husband and I have been in the same boat for 3 + years now. I could not go back to work after the birth of my daughter, and our finances have been very stretched for a long time.
The reason I ask what state is...that each state has a early intervention program for birth to 3 yrs, it is call the First step program here in MO, and it paid for (at least for us) all of her therapy, and the therapist(s) came to our house.
Have you seen a pediatric nuerologist? one that specializes in BPI. The only reason my pediatrician knows anything at all about my daughters injury is because I educaduated him. at 9 days it is still very early to tell what the healing will be. My little one did not flinch/total paralzed for the 1st 5 mnths, now at 3 1/2 she is doing awesome with the extent of her injury. each injury is very unique. Soooo do not give up hope.
The resources page has a list of docs that may be in your area.
Keep your chin up, we will keep you in our prayers. and enjoy the miracle that is your child!!!!
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.
Your doctor cannot know the full extent of your daughters injury at 9 days. I know it's so hard to wait for movement. Please don't panic yet... and research your options. When I was born all therapy was done at home by parents... I can't help with the financial issues but seek Early Intervention and medical help from the state and then if the doctor want to sign papers saying the injury is permanent perhaps you can get SSI.
Diane-
There is always hope that your baby will improve. 9 days is not long. My son Trent ROBPI(now 4 months old) has made huge gains in the last 4 months. He had only wrist and finger movement when he was born-now he can basically do everything but supination and put his arm over his head. I have been told that is the last to return. Physical Therapy is important and you are correct to go though your state programs to get help. We use the Maryland Infants and Toddlers Program. Also you may want to check Dr. Kozin at Shriners in Philadelphia. Shriners provides FREE care-yes FREE-(I couldn't believe it either) to children under 18. You do need to apply and there is a process to go through. I know it is far for you but airlanes have deals to help families who are seeking medical help for children. I was overwheled too in the begining but this board really helps and you can learn a ton from it. Best of luck and hang in there. Let me know if there is anything I can do to help.
Anita
Diane
Sorry to hear you are going thru so much. Please take my advice and document everything...request a copy of her birth records...keep copies of dr. visits...(this may help her in the future)!!! I am 32 years old and injured at birth as well. I am still waiting to see if all the information was properly documented about my birth injury. My mother and I have learned so much about obpi since we have found this site. The best thing you can do for your daughter is to find a specialists that can pinpoint the damage and see if there is anything that can be done to enhance her future. Don't give up or listen to some of these quack drs. out there. There is always hope...no one can take that from you. Your family is in our thoughts prayers. Read up on as much information you can on this injury.
I bet she is a beautiful little girl!!!!!!!!!!!!!!!
Diane:
I know exactly how you feel. At 12 days we brought our daughter to see a neurologist and he pretty much said the same thing. Well we never went back to see him again and I am glad to say after alot of hard work our almost 3 yr old has had a good recovery. Try not to get too discouraged and as the others have said get in touch with early intervention asap.
Your doctor does not know that this info is accurate even though he is the one who stated it. I believe it is his opinion and that tells you that his opinion may be wrong.
I talk from experience b/c we brought our daughter to a doctor at 1 month old and he assured me that this injury was severe and that she would require nerve surgery! I went home in tears. I was so depressed! I took her to Dr Waters a couple of weeks later and it was completely different and his opinion was opposite! You need to see a BPI specialist to get this type of answer. To make a long story short, my daughter did not need nerve surgery and everything the first doctor told us was completely wrong and very far from the truth!
Get another opinion and don;t get so upset b/c it is still SO EARLY! Good luck and best wishes!
~Krista~
Love the name Tess - if we had a girl, her name would have been Tess! Instead I had a twelve pound baby boy - Garrett (now 2yrs).
What part of MI do you live in? We live in Auburn Hills. Even though we have insurance, it only covers therapy for two months a year. We've had to purchase another insurance for the rest of the year -it is based on diagnosis and income. Please e-mail me if you need any further information or just need someone to talk to.
Carrie
