My daughter (which I noticed issues since birth) has been diagnosed with weak hips, and issues also with one leg over another (muscles not streatching). Our assignment so to say. is daily exercises for the next "?" years most likely 5 at minimum! She walks o.k. but you can see very clearly that something is up. We've been doing exercises for a month now! I am doing them but part of me feels overwhelmed some days that this is something that will be going on for years. I think most of my feeling is from that fact we have to change the whole way she has been sitting, standing up, going up stairs etc. I feel that my being on guard to her position is overwhelming. My older two help out, my husband isn't really on board yet! Part of me is frustraited the the pediatrician didn't feel it was a big issue until 2 mo ago and then all of a sudden we are in crunch time and need to focus on this now! The one thing I have been meantioning since she was 3 months old! I feel I left my guard down and now something that could have been dealth with sooner and possibly lead to a quicker recovery will now take years! The physical therapist is trying to remind me that this wasn't my faulth it is how she was positioned when I was pregnant and that typically they like to see if they will "grow out" of an issue first! But still all the signs were there and meantioned for this issue, not playing with her toes, slow to walk, slow to sit...etc.
So will I feel less stressed about this, those of you who have lots of PT to do with your child/children I think I might just be in first diagnosis shock!
My daughter was born with Craniosynostosis (Coronal) as well as Torticollis. A shortening of the muscles and tendons in the neck, due to positioning in the womb. Took a lot of prodding to get diagnosis for both. She started PT at 4 month for the Tort... went on for 2 years... just finished, but will have to go back later if it worsens. Long, hard, emotional. Its good to find someone in the same boat to relate. That helps some.
What carried me thru was the knowledge that if I didn't do my job....then the odds were my son would not be able to walk without crutches - or worse. When I was not actively assisting in the exercises, then I was right there alongside him....matching him, movement for movement. & I cried when he cried.....
My son was 6 when he was diagnosed with a degenerative hip disease. This dx came just 4 months after losing our daughter during her 2nd day of heart surgery. So not only did our son lose his baby sister, but he was also thrown into a battle for his freedom to run/play as a child. He battled this thruout his entire childhood, ending with his 1st hip replacement at age 23. We did everything we could thru the years to normalize his childhood.....& I like to think that all we did helped.
As for the daily care, it was ALL on me. My DH was working 56-70 hours per week. We were paying off our DD medical bills, dealing with her loss, + adding in a whole new world with our son's disability. What kept me going was faith, the freedom to share my daily angst with my family/best friend, & the knowledge that we were fully responsible for our son's care....& his future. That is what kept me going.
Through my constantly questioning & researching, I learned how to fight a good fight....whether it was the dr's office, the PT dept, his school's administration, or the insurance co. I kept on top of things....& just kept plugging away. I am also blessed with the ability to sleep/nap thru adversity....it's the best thing in the world! I can take a 2 minute catnap & wake refreshed....& ready to tackle the next big thing.
Through your daughter's tx, please know that faith & strength is part of motherhood. It just keeps growing & growing....& our reward is our child's smile!
That five years is is an estimate. It could be shorter! Kids can do amazing things.
My son will be five at the end of April and we have been in speech and OT since he was 19 months old. Glad I pushed it but there ARE days that it seems like it's NEVER going to end. He's ROCKIN' 4K this year but he's still getting services in and out of school.
I DOES get better and soon this will all be a STORY to tell and not your real life. Over time this will just fade into a memory. Hang in there!
My daughter has Cystic Fibrosis. We have done Chest Therapy on her 2-4 times a day (30 minutes to 1 hour each time) since she was 1 week old. She is 4 now. She will have to do this every day for the rest of her life.
I can honestly tell you... the beginning is the most difficult. Take it day by day, 1 therapy at a time. Thinking about it in terms of years is just really too overwhelming in the beginning. Be positive and focus on the fact that you are lucky to have something that will correct your child's issue. The past is the past. You cannot waste your energy on What ifs...
Remember your child can feel your stress too.
In time the PT will become part of the daily routine and you won't feel so stressed by it.
Good luck.
I started doing PT with my daughter when she was two months old...an issue that should have been easily resolved...and then, when our first PT told us she was fine, *I* could look at her and tell she wasn't. So, we went to a physiatrist (physical medicine doctor) who confirmed what I was thinking and referred us to another PT, 40 minutes away. All told, we've been doing PT for 10 months with our daughter. She is finally resolved. However, that doesn't mean we're done; since she could regress at any time, we are supposed to keep her stretching and working her muscles regularly. And yes, it leaves me in horrible fear--at what point can we just say she's done, she's normal, I'm finished with this??? But, her head got so misshapen that she needed two helmets to re-shape it, so I'm hesitant about letting her PT go too quickly, lest we wind up with permanent problems. Oh...and while we were there, we decided to try PT to solve some of my son's issues with his feet--so now we are going to an orthotist for his feet (we just finished with my daughter's head) and to PT with him, as well. Prior to this fun extravaganza, I had NEVER been referred to any kind of specialist, for anything, for me or my children. I come away from our PT sessions exhausted and overwhelmed. I actually generally call my husband or my parents on the way home from our appointments, just to decompress and talk through all that I learned. Also, keep in mind that you don't have to be 100%--you are changing her muscles, teh way her body works--and that's a work in progress. You don't need to follow her around all day (and if that's really what your PT is advocating, you need to find a new one--part of their JOB is to find exercises that are DOABLE, not unrealistic), you just need to encourage her to do it the new way as much as you can. Getting your husband on board would REALLY help; mine has been fabulous through all this, and it's helped so much.
Take her to a Rolfer who specializes in children. Once the muscles are placed where they really belong everything to do with movement will be easier.
The Rolfing Center in Boulder, Colorado can give you a good referral to someone in your area.
Yes you will feel less stressed, the afternoon after I had my son the doctor mentioned that he wanted another doctor to come over and take a look at him. I asked him if there was something wrong and he said that my son was showing some typical characteristics of Down syndrome. When my son was a week old the prelim results came in and yes he does have Down syndrome. There were good days and there were days where I would cry myself to sleep. It took awhile for the all out sadness to go away, but it still does come around when we are told that there is something else wrong with him, he is 12 and just found out that he has cataracts :(
Good luck! Take one day at a time. Oh and this poem helped me out quite a bit:
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.
and:
Celebrating Holland- I'm Home
By Cathy Anthony
(my follow-up to the original \Welcome to Holland\ by Emily Perl Kingsley)
... I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.
I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.
Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.
I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?
Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.
I have come to love Holland and call it Home.
I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.
Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!
Hi H.,
I'm not going to bash you or minimize what you are dealing with, you have every right to be overwhelmed, frustrated and stressed. But I am here to remind you that becoming a parent is somewhat like marriage, we get the good with the not-so-good sometimes and unlike marriage, we don't have an out if parenting becomes frustrating or "too much" for us to deal with ; )
All of us have situations that arise with our children, my son was kidnapped at the age of 5 by his biological father, taken to a foreign country, and kept from me for 10 years, 9 months, my preschooler came back almost a man. Another family I'm aware of just lost their precious 12 year old daughter, Jessica (Jessie) Joy Rees, yesterday morning, she was diagnosed with brain cancer just 10 months ago:
http://www.ocregister.com/articles/cancer-334396-negu-fac...
http://www.jessicajoyrees.com/
I've known other families who've lost their children, some younger than your daughter, to car accidents, illness, and such, and want to encourage you to put things into perspective, it is what it is. You have your daughter, you can help her, just take it one day at a time. A friend of mine whose son had leukemia from the age of 3 - 8 became his best friend in the world, for what they went through together, he at 14 is closer to her than she ever imagined. He knows what his parents did for him and he respects and appreciates them for that. Your daughter will do the same.
Give yourself time to deal with the shock and frustration, learn all you can, reach out to any support groups available, and encourage (don't force or he may resent it) your husband to help. Don't blame yourself, you would never have done this to your daughter knowingly, and you had no control over it. Give yourself over to the job ahead with no reservations or anger and do what you need to do to ensure your daughter the future she deserves. As Jessie would say, NEGU ~ Never Ever Give Up!
Hugs and God's blessings to you and your family.
1- Always stick with your mommy gut; it's rarely wrong, and even then, better safe than sorry!
2- Yes, you'll probably be doing this for quite some time, but think of it this way, in the big scheme of things, 5 years of PT is NOTHING compared to a 70-90 year life span ;) It's better you caught it and are working on it NOW than once your kiddo hits school age.
I'd stick with it, and be persistent. Have the pediatrician and PT write a note to your husband, telling him they expect him to participate in x, y, and z (I had to do this for my husband for our son's food and speech therapy)... it helped, and I wasn't the bad guy ;)
You'll get there! Once this time has passed, like anything else working hard for, you'll be really proud of what BOTH of you have accomplished!!
Best wishes!
I imagine that you are having an especially bad & overwhelming moment/ day/ week. Will you have more periods , of feeling the way you do now?- Yes. Are you going to follow through & do what' s best for your kid? - Yes. When you're feeling overwhelmed, just remember that there will be other moments when you see progress & be elated . Those times will be due to your persistence & it will be worth all the not-so - good days.
