Hi everyone. I posted a long time ago when Brianna was first scheduled to have the Hoffer procedure (similar to the Mod Quad), but I didn't introduce myself or get to know anybody.
Pat (Brianna's daddy) is in Iraq, she has had the surgery and is now out of the brace. I thought I had done well handling it all but her checkup did not please the surgeon. She still has reduced gleno-humerol movement and almost no separation of movement in her shoulder and scapula. The winging appears more prominent than before the surgery and she is holding her pecs so tight during PT they can hardly work with her arm. I don't feel like I am doing enough for her. But how do you teach a 19 month old to relax and repeat the movements?
I was trying to catch up on some of the more recent posts and started crying... I have been so detached. And it has hit home to me that this is something we will live with for the rest of her life. The surgery was not the "miracle cure" I had thought it would be.
Although she does seem to have a greater range of motion over her head and supinates beautifully... and it appears she gained some sensation because she now squeals when I blow raspberries on the right side of her neck.
I am rambling... but just typing this made me feel a little more connected.
Thanks!
Eve
Feeling lonely and overwhelmed
Re: Feeling lonely and overwhelmed
Eve,
As someone who has lived with this injury my whole life, my best advice to you is to rejoice in what she can do and don't despair on what she cannot do. It sounds like she made some significant gains with the surgery, with the over the head movement and supination. Those are wonderful improvements.
I'm not saying you should not strive for more. I just don't think you should feel bad that everything wasn't 'fixed'.
Nancy
As someone who has lived with this injury my whole life, my best advice to you is to rejoice in what she can do and don't despair on what she cannot do. It sounds like she made some significant gains with the surgery, with the over the head movement and supination. Those are wonderful improvements.
I'm not saying you should not strive for more. I just don't think you should feel bad that everything wasn't 'fixed'.
Nancy
Re: Feeling lonely and overwhelmed
You are under a tremendous amount of stress right now! I'm so sorry. Try to just realize you have to deal with one thing at a time. Don't feel guilty over what you can't change. Try to take one day at a time and cope with hurdles as they come and don't beat yourself up. I will be praying for you and your family.
T.
T.
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Mommyanders
- Posts: 238
- Joined: Tue Apr 02, 2002 4:28 pm
Re: Feeling lonely and overwhelmed
Hugs, Eve! I'm sorry you had a bad report! Did they say what they can do about it? What a tough thing to go through. Your in my thoughts and prayers.
Kari
Kari
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Karen Hillyer
- Posts: 562
- Joined: Fri Sep 06, 2002 1:36 pm
Re: Feeling lonely and overwhelmed
Eve
I remember very well, how I felt after my son's second surgery, which was a subscapularis release, he was 2.5 years old and he HATED doing the therapy after surgery, he would hold his arm very tight into his body and not let me touch it - I think he was terrified that the PT would hurt him.
After fighting with him for a couple of weeks and getting nowhere, I gave up on "doing therapy" and went for gentle massage with baby oil - I started with both of his hands and then the next day up to his elbows and then his biceps - after about a week, he would let me "massage" the muscles round his shoulders - I don't think it did as much good as therapy, BUT it helped him and I to regain confidence in each other and eventually to re-start the therapy.
These are very difficult times for you - don't be downhearted, the surgeon may not have been been pleased with the results of surgery and you feel you haven't done enough for your baby - this isn't so - this is the nature of a BPI you just can't predict what will happen next.
Take some time out for you and your little one to enjoy eachothers company - you have a life time to do therapy - and you probably will do it for a lifetime too!
These horrible difficult times will pass eventually and she will surprise you with her progress one day.
I pray you will find the strength to get through these times and that you will find some peace soon.
Karen
mum to Gavin ( age 11 robpi)
I remember very well, how I felt after my son's second surgery, which was a subscapularis release, he was 2.5 years old and he HATED doing the therapy after surgery, he would hold his arm very tight into his body and not let me touch it - I think he was terrified that the PT would hurt him.
After fighting with him for a couple of weeks and getting nowhere, I gave up on "doing therapy" and went for gentle massage with baby oil - I started with both of his hands and then the next day up to his elbows and then his biceps - after about a week, he would let me "massage" the muscles round his shoulders - I don't think it did as much good as therapy, BUT it helped him and I to regain confidence in each other and eventually to re-start the therapy.
These are very difficult times for you - don't be downhearted, the surgeon may not have been been pleased with the results of surgery and you feel you haven't done enough for your baby - this isn't so - this is the nature of a BPI you just can't predict what will happen next.
Take some time out for you and your little one to enjoy eachothers company - you have a life time to do therapy - and you probably will do it for a lifetime too!
These horrible difficult times will pass eventually and she will surprise you with her progress one day.
I pray you will find the strength to get through these times and that you will find some peace soon.
Karen
mum to Gavin ( age 11 robpi)
Re: Feeling lonely and overwhelmed
I wish things could be improved for all our kids but at this stage it can't. As a parent we can only do our best and give our kids all the love and care they can handle. We must give them the chance to be the best they can be and to believe in themselves. Everyone has a talent and we must help them to make the most of it. I remember feeling as you do and it is so overwhelming but life is a roller coaster ride and we need to be here for each other to help each other keep on track. No one can be expected to do everything right. So my advice is to step back look at your daughter through different eyes not just the arm the whole person and enjoy those precious early years because our kids grow up so fast we can miss out on the little things that mean so much later. Our kids and us do get by. Trust your own instincts and you won't go wrong no one knows your child like you.
My son is now 23 and still worries me but he has achieved things beyond my wildest dreams so don't worry too much they have strengths that will surprise and amaze you if we give them the chance.
My son is now 23 and still worries me but he has achieved things beyond my wildest dreams so don't worry too much they have strengths that will surprise and amaze you if we give them the chance.
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Francine_Litz
- Posts: 2199
- Joined: Sat Mar 22, 2003 9:03 pm
Re: Feeling lonely and overwhelmed
Eve -
ditto on everthing everybody has already said....you've gotten fantastic advice...
When Maia had her mod quad surgery - I know for sure that it took her a whole year for her rehab...I remember thinking that it my head that I finaly understood what rehab therapy meant because it did take a long time for her to "come back".
I want to make a comment about something you posted "how do you teach a 19 month old to relax and repeat the movements?
The answer: play therapy. Babies don't do therapy like adults do - they don't do repeat movements and exercises - BUT they can do repeat movements by playing. Stretching pecs is easily done on a big physio ball - child lays on her back and you do upside down backwards games - reaching for puzzle pieces or whatever... Maybe I'm reading into your post, but it sounds more to me like it may be time for a therapist change to someone who really knows how to motivate a wee one to getting things done in a fun way. On this site there is a really good therapy page called Stretching the Limits - it's found in the awareness section (hit anything Awareness off the home page) and then go into the resources - then choose the page. http://ubpn.org/awareness/A2002stretchingland.html
Maia goes to a therapy organization called Theraplay. Every single thing she does there is a game....and all of her therapy goals are completed each time she comes. It's incredible how many ways one can play a game and get those movements in. When Maia was younger and doing her mod quad rehab, I remember setting up different pillows in different sizes around the room... Maia would have to crawl up and over each pillow to make it to the last pillow where there were a pile of games. When she made it to the end, she'd pick a game and play the game with her OT (each game was done for specific movement) and then she'd had to crawl back down the pillows and start the process again.
Also - getting into a warm water environment - a heated pool - can be very helpful at this time. Even if you don't do professional therapy but do it yourself - there are some great floaties out there that won't put pressure on the arm itself - just splashing in the water is fantastic exercise - or swishing in the water with your hands. Look at this page http://www.injurednewborn.com/maia/aquatics.html and also at this page http://ubpn.org/awareness/A2003aquatic.html
This post surgical tightness I would think is pretty normal - the winging we learned is a sign that the humeral head is in it's correct space (it's a sign of it not being dislocated, which is common in the kids). So all may not be so bad as it seems.
Time is important - your baby needs time to get used to a new "anatomy" when things gets shifted - the muscles themselves have to get used to it - they have to all relax after being worked on and after being braced for so long.... it'll just take some time.
Thank you for letting us know that Pat is in Iraq. My heart goes out to you... and a great deal of respect is being sent your husband's way. Maia and I will keep him in our prayers,
-francine
http://www.injurednewborn.com/maia/homepage.html
ps - we have a chat going on Wednesday night at 10 pm est http://www.injurednewborn.com/chatroom.html
hope you can join in some time
ditto on everthing everybody has already said....you've gotten fantastic advice...
When Maia had her mod quad surgery - I know for sure that it took her a whole year for her rehab...I remember thinking that it my head that I finaly understood what rehab therapy meant because it did take a long time for her to "come back".
I want to make a comment about something you posted "how do you teach a 19 month old to relax and repeat the movements?
The answer: play therapy. Babies don't do therapy like adults do - they don't do repeat movements and exercises - BUT they can do repeat movements by playing. Stretching pecs is easily done on a big physio ball - child lays on her back and you do upside down backwards games - reaching for puzzle pieces or whatever... Maybe I'm reading into your post, but it sounds more to me like it may be time for a therapist change to someone who really knows how to motivate a wee one to getting things done in a fun way. On this site there is a really good therapy page called Stretching the Limits - it's found in the awareness section (hit anything Awareness off the home page) and then go into the resources - then choose the page. http://ubpn.org/awareness/A2002stretchingland.html
Maia goes to a therapy organization called Theraplay. Every single thing she does there is a game....and all of her therapy goals are completed each time she comes. It's incredible how many ways one can play a game and get those movements in. When Maia was younger and doing her mod quad rehab, I remember setting up different pillows in different sizes around the room... Maia would have to crawl up and over each pillow to make it to the last pillow where there were a pile of games. When she made it to the end, she'd pick a game and play the game with her OT (each game was done for specific movement) and then she'd had to crawl back down the pillows and start the process again.
Also - getting into a warm water environment - a heated pool - can be very helpful at this time. Even if you don't do professional therapy but do it yourself - there are some great floaties out there that won't put pressure on the arm itself - just splashing in the water is fantastic exercise - or swishing in the water with your hands. Look at this page http://www.injurednewborn.com/maia/aquatics.html and also at this page http://ubpn.org/awareness/A2003aquatic.html
This post surgical tightness I would think is pretty normal - the winging we learned is a sign that the humeral head is in it's correct space (it's a sign of it not being dislocated, which is common in the kids). So all may not be so bad as it seems.
Time is important - your baby needs time to get used to a new "anatomy" when things gets shifted - the muscles themselves have to get used to it - they have to all relax after being worked on and after being braced for so long.... it'll just take some time.
Thank you for letting us know that Pat is in Iraq. My heart goes out to you... and a great deal of respect is being sent your husband's way. Maia and I will keep him in our prayers,
-francine
http://www.injurednewborn.com/maia/homepage.html
ps - we have a chat going on Wednesday night at 10 pm est http://www.injurednewborn.com/chatroom.html
hope you can join in some time
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Feeling lonely and overwhelmed
Thanks everyone.
I know that I was having a low moment. Long durations of stress will do that! Brianna's main problem with her therapy might be her age. She does fight the massage and stretching (to gain separation), but mainly she is testing both her PT and me to see how far she can push her limits. She does her therapy at a wonderful children's hospital and they incorporate everything into games. But if Brianna wants to play in the kitchen area instead of the rice bin she throws a horrible screaming fit. It's exhausting. Her PT and I have discussed that it is a phase and she'll get better at following instructions but right now it's an ongoing battle... constantly. She continues this at home. Once she realizes I want her to play a game... she STOPS. This is my first baby and I don't have any idea how to set limits with her. I try to not give in when she has a tantrum but THIS IS HARD. And in the back of my mind is the weight of the importance of therapy and the fact that I am solely responsible for the home portion of it all while Pat is overseas. Normally I would ask my Mom for advice but (stress factor #3) she has been diagnosed with a progressive form of dimentia and has forgotten who I am. WOW it hurt to write that last line...
OK, all of you praying for me to be stronger... if He only gives us what He thinks we can handle, by all means pray for me to be weaker so He'll stop giving me more! LOL
Thanks again for all of the replies. They helped me more than you know.
Eve
I know that I was having a low moment. Long durations of stress will do that! Brianna's main problem with her therapy might be her age. She does fight the massage and stretching (to gain separation), but mainly she is testing both her PT and me to see how far she can push her limits. She does her therapy at a wonderful children's hospital and they incorporate everything into games. But if Brianna wants to play in the kitchen area instead of the rice bin she throws a horrible screaming fit. It's exhausting. Her PT and I have discussed that it is a phase and she'll get better at following instructions but right now it's an ongoing battle... constantly. She continues this at home. Once she realizes I want her to play a game... she STOPS. This is my first baby and I don't have any idea how to set limits with her. I try to not give in when she has a tantrum but THIS IS HARD. And in the back of my mind is the weight of the importance of therapy and the fact that I am solely responsible for the home portion of it all while Pat is overseas. Normally I would ask my Mom for advice but (stress factor #3) she has been diagnosed with a progressive form of dimentia and has forgotten who I am. WOW it hurt to write that last line...
OK, all of you praying for me to be stronger... if He only gives us what He thinks we can handle, by all means pray for me to be weaker so He'll stop giving me more! LOL
Thanks again for all of the replies. They helped me more than you know.
Eve
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Mac's Matthew
- Posts: 23
- Joined: Tue Nov 04, 2003 5:33 pm
Re: Feeling lonely and overwhelmed
Eve, I know how you feel! I sent email. You not only have to deal with the injury, but it sounds to me like your husband is in Iraq...that makes it all the more difficult. I am in the Army, and have dealt with the strains military life can send your way. Know that there are options for making it through this period! Two weeks ago, I felt so sad...I just needed friends, and luckily many folks from this board wrote me and consoled me. Today, I feel much better. Hang in there!