Our orthopedist has been wonderful. She has worked very very hard on Owen's clubfoot. She is the doctor that, when he wasn't gaining weight, sent us to check out his lungs because if a baby is trying too hard to breathe and expending that energy and burning those calories, you may have a problem. And he did, hence the VEPTR surgeries. She also casted Owen 3 times weekly for his clubfoot and she would see us quickly if she knew that we had other places to be, which is priceless on a busy appointment day. I am glad we started this journey with her.
But, as I have been writing lately, I am frustrated. I am especially frustrated because I can see that I have a child who already wants to walk and stand and we haven't gotten very far with his legs and feet. This is not for lack of trying, but Owen's body is tough. It's rigid. It likes to curl up and tries at every turn to get back to curved. And I was and have been a proponent of conservative therapy. However, there comes a time where you have to make a judgment call. Do I continue to treat conservatively and maybe get no where and push potential surgeries off? Will it finally work and I will be thrilled we kept at it? Do I opt for surgery so that he has a shot at walking at an early age? Do I take the chance, not operate for a while and while he get stiffer, run the risk of losing some functionality of both his knees and feet? Do we do surgery that basically guarantees that he will have arthritis problems and pain later in life? What do I do????
Our orthopedist had to go on medical leave for a while. In the interim, she said we should see another orthopedist and I did. It's the ortho that I wanted to see from the beginning who specializes in Arthrogryposis. However, he is the ortho that does not take our insurance and I knew when Owen was 6 days old and I called, that I would be racking up bills in the hundreds of thousands for orthopedic care only. To give you an idea- Owen's last VEPTR bill was for $175,000.00. That does not include the doctors fees. So, I knew I couldn't swing it. However, now he will accept what our insurance pays so long as we have met our deductible. We meet our deductible around the end of January now.
So we see him yesterday. He walks in and we go over all of O's issues. He tells me about how many children he sees with Arthrogryposis. We have a laugh over the fact that I am a medical malpractice attorney (he asked what I do and I don't keep it from them ever). Then he touches Owens legs. Without a shadow of doubt, he looked at me and said, "you know one of the biggest hurdles with these kids is whether or not they have good muscle function." I said I knew that and that I had not had the opportunity to have Owen's muscle biopsied because the places he has been open surgically (the spine and the hernias and the back and ribs) don't have good active muscles and the biopsy would be wasteful. Then he said, "I can feel his leg muscles and he has great muscle quality. He could be walking. We need to get on that now." Easy as that, I was elated. And I knew, we would be seeing him again.
I am not really a dreamer. I would like to think that I am realistic about most things and especially Owen. I have never doubted that he may walk but I have also attempted to cautiously warn those that are too hopeful that there is a real possibility that he won't and that we most likely will have wheelchairs and ramps and the whole nine yards. That all still could be true. But to hear someone who does this all the time, who sees these kids and operates on them and treats them, say this makes me more of a believer. No one has been this optimistic, with the exception of his therapists who can see (as well as us) that he wants to stand and walk and take steps. For someone to speak in absolutes is pretty exciting.
So a new part of this roller coaster ride begins. We do the VEPTR next week and God willing, we don't have complications and we are home within a reasonable period of time. Then we see this doctor again 6 weeks later and come up with a plan for his knees and feet. He can do one leg at a time, but the foot and knee at the same time, which cuts down on the amount of surgery needed and it means Owen won't have to go through 4 separate castings (2 feet, 2 knees). It means less anesthesia, less hospital time, less chaos.
It means that one day, hopefully in the next 6-8-10 months, I am going to see Owen walk down the hallway (assisted or unassisted) and go looking for whatever trouble Caleb has found and watch him participate in wrecking my house, instead of being a bystander. And I can't wait.
Wednesday, September 28, 2011
Tuesday, September 20, 2011
Running? Who me?
I have been somewhat quiet about my diet and exercise as of late- which is usually an indication that I am doing well and sticking to it. I started exercising March 1, 2011. Initially, Nick and I had an exercise challenge. We competed on a weekly basis to see who exercised more. If I won, I got a back massage. If he won, he got a back scratch. We both love these things and usually dislike giving them, so this was motivation. Needless to say, we kept up the challenge from March until June. I won more than he did. I don't care what he tells you. I did.
At that time, I realized that I couldn't concentrate on dieting and exercise given everything we have going on, so I picked exercise and I kept at it, 5-6 times weekly. The only time I got lazy was the two weeks following Owen's first VEPTR surgery. I just was emotionally spent and exhausted and at that point, I had lost 10 lbs or so and gained 4 back in Philadelphia. Oh my Lord, there is a place that conveniently delivers to the hospital called the Greek Lady and it has vegetarian gyros made with veggies AND french fries. Odd, but delicious, I assure you. Well 8 of these later, I packed on 4 lbs. I won't be repeating this mistake again in October.
I picked it back up in July,(exercise- not the gyro)and became really serious about my diet too. Unlike other times, I was not thinking of it as a diet but more as a life style change. I went to BBQ's and ate. I had a piece of birthday cake. For once, I did not let those things ruin a perfectly good eating day otherwise. I credit this to a website called My Fitness Pal (MFP for short). At the risk of sounding like a commercial for MFP, it is amazing. It's free and has a facebook type set up where I log my food, exercise and progress every day. It really helps to see the numbers. It helps to see that if I exercised hard, I can eat that cake and I don't have to worry about it another minute. For anyone who wants to lose, check it out. You have friends and there are chat rooms and people make up challenges for the month and you can join them. It's really so helpful to have a place to put it all down. People who don't "diet" don't realize, it's kind of like an obsession. Every morsel, every calorie, the adding, the subtracting, the meal planning etc... It's time consuming.
But back to my exercising. When I started, I walked and walked and walked. Then I started biking. I walked and biked. I biked all over my neighborhood all summer with Nick and without. On MFP, I joined the July Move Your A$$ Challenge and made a pledge that I would walk 65 miles in July. I ended up logging 83 by the end of July and I was fascinated and hooked on paying attention to how much I was moving. I walked on lunch. I walked in the morning. I biked in the evenings. Nick and I took long bike rides on Sundays.
Then came August (as it generally does) and it was time for our family reunion. My whole family is running. My cousins Christine, Katie and Kathryn are running. They are long and lean and they are running. And I feel inspired. I am not built like them and they are all thin, but I started thinking that I had been walking and biking a ton and maybe it was time for a challenge. I joined the August Move Your A$$ Challenge on MFP and I pledged 85 miles for August and about halfway through the month, started C25K. C25K is the "Couch to 5K" program. Each week you walk/run intervals starting with 60 seconds at a time and working your way up to 30 minutes of running which if you run fast, is a 5K. By the end of August I surpassed my 85 mile goal and ended up logging a total of 93 miles.
And here we are in September. I pledged 100 miles for the September challenge. As of today I am at 83.75 miles and have no doubt I will surpass 100. If this post is up on my blog and you are reading it then this morning I just finished week 5 of the c25k program. (I wrote this post Monday and it should be Friday if I was able to complete week 5). I waited until Friday to post this because as of today, I was able to run 20 minutes straight which is 1.7 miles on my route. Based on my timing as of late, that means I am running about an 11 minute mile. For someone who never ran and who just started, I am pretty proud of that. I am so proud of myself and how hard I have worked that I signed up for my first 5K which is November 20, 2011- the 43rd Annual Mamaroneck Turkey Trot. I have 3 more weeks of the c25k program to finish where I will take that 20 minute run and increase it by 5 minutes each week until I am running 30 minutes a day/3 times per week. Then I have about 4 weeks to work on my speed. I also have left myself enough time for Owen to get his VEPTR and for me to take it a little easier that week if need be, although, I have mapped out a 3 mile run for Philadelphia nearby the hospital.
I have no goals for my first 5K other than to finish it running. I want to prove to myself that I can do it. I have been working so hard and actually enjoying the feeling of being able to do this. Today (Friday- as I am editing this now) I felt amazing to finish my 20 minutes. I looked like a complete idiot with a smile plastered on my face this morning during my cool down walk, as I gasped for breath. But I don't care.
In addition to the biking, walking and running, I take a yoga class once a week and have joined a gym that I go to twice a week for weight training and light cardio on my "rest" days.
I have lost 27 lbs and 5 inches off my hips, 4 off my waist, 3 off each arm and calf. I am down one pant size.
I have a long way to go, but I wanted to share. I am pretty excited.
At that time, I realized that I couldn't concentrate on dieting and exercise given everything we have going on, so I picked exercise and I kept at it, 5-6 times weekly. The only time I got lazy was the two weeks following Owen's first VEPTR surgery. I just was emotionally spent and exhausted and at that point, I had lost 10 lbs or so and gained 4 back in Philadelphia. Oh my Lord, there is a place that conveniently delivers to the hospital called the Greek Lady and it has vegetarian gyros made with veggies AND french fries. Odd, but delicious, I assure you. Well 8 of these later, I packed on 4 lbs. I won't be repeating this mistake again in October.
I picked it back up in July,(exercise- not the gyro)and became really serious about my diet too. Unlike other times, I was not thinking of it as a diet but more as a life style change. I went to BBQ's and ate. I had a piece of birthday cake. For once, I did not let those things ruin a perfectly good eating day otherwise. I credit this to a website called My Fitness Pal (MFP for short). At the risk of sounding like a commercial for MFP, it is amazing. It's free and has a facebook type set up where I log my food, exercise and progress every day. It really helps to see the numbers. It helps to see that if I exercised hard, I can eat that cake and I don't have to worry about it another minute. For anyone who wants to lose, check it out. You have friends and there are chat rooms and people make up challenges for the month and you can join them. It's really so helpful to have a place to put it all down. People who don't "diet" don't realize, it's kind of like an obsession. Every morsel, every calorie, the adding, the subtracting, the meal planning etc... It's time consuming.
But back to my exercising. When I started, I walked and walked and walked. Then I started biking. I walked and biked. I biked all over my neighborhood all summer with Nick and without. On MFP, I joined the July Move Your A$$ Challenge and made a pledge that I would walk 65 miles in July. I ended up logging 83 by the end of July and I was fascinated and hooked on paying attention to how much I was moving. I walked on lunch. I walked in the morning. I biked in the evenings. Nick and I took long bike rides on Sundays.
Then came August (as it generally does) and it was time for our family reunion. My whole family is running. My cousins Christine, Katie and Kathryn are running. They are long and lean and they are running. And I feel inspired. I am not built like them and they are all thin, but I started thinking that I had been walking and biking a ton and maybe it was time for a challenge. I joined the August Move Your A$$ Challenge on MFP and I pledged 85 miles for August and about halfway through the month, started C25K. C25K is the "Couch to 5K" program. Each week you walk/run intervals starting with 60 seconds at a time and working your way up to 30 minutes of running which if you run fast, is a 5K. By the end of August I surpassed my 85 mile goal and ended up logging a total of 93 miles.
And here we are in September. I pledged 100 miles for the September challenge. As of today I am at 83.75 miles and have no doubt I will surpass 100. If this post is up on my blog and you are reading it then this morning I just finished week 5 of the c25k program. (I wrote this post Monday and it should be Friday if I was able to complete week 5). I waited until Friday to post this because as of today, I was able to run 20 minutes straight which is 1.7 miles on my route. Based on my timing as of late, that means I am running about an 11 minute mile. For someone who never ran and who just started, I am pretty proud of that. I am so proud of myself and how hard I have worked that I signed up for my first 5K which is November 20, 2011- the 43rd Annual Mamaroneck Turkey Trot. I have 3 more weeks of the c25k program to finish where I will take that 20 minute run and increase it by 5 minutes each week until I am running 30 minutes a day/3 times per week. Then I have about 4 weeks to work on my speed. I also have left myself enough time for Owen to get his VEPTR and for me to take it a little easier that week if need be, although, I have mapped out a 3 mile run for Philadelphia nearby the hospital.
I have no goals for my first 5K other than to finish it running. I want to prove to myself that I can do it. I have been working so hard and actually enjoying the feeling of being able to do this. Today (Friday- as I am editing this now) I felt amazing to finish my 20 minutes. I looked like a complete idiot with a smile plastered on my face this morning during my cool down walk, as I gasped for breath. But I don't care.
In addition to the biking, walking and running, I take a yoga class once a week and have joined a gym that I go to twice a week for weight training and light cardio on my "rest" days.
I have lost 27 lbs and 5 inches off my hips, 4 off my waist, 3 off each arm and calf. I am down one pant size.
I have a long way to go, but I wanted to share. I am pretty excited.
Tuesday, September 13, 2011
Frustrated.
I am frustrated. I am one and half years into this journey with Owen and I realized with a good amount of sadness this week, that we are barely crossed anything off the list of what needs to be done for Owen and for those of you who know me well, you know I like to cross things off the list.
Some of you may wonder how I could have a list of things to be done to Owen. It may seem detached or cold even. But for those of you who have children with special needs that have what seems like an unending amount of surgeries or body parts that need fixing, I would venture to guess you understand completely. I have to be detached or even a little cold when it comes to thinking about these things. Otherwise, every time I scheduled our pre-surgical appointments and geared up for another round of hospital stays, sleepless nights, unrest and family upheaval, I would break down and cry or worse. And worse is not acceptable.
So I have a running list. A list of future surgeries, a list of body parts and potential treatments, a list of questions to ask about body parts and future treatments, ideas for therapies. And the list goes on...so to speak.
Currently my list also reflects my frustration and sadness and a little bit of "why me" or "why Owen". It looks a little like this:
Right sided VEPTR 10-4 (Oh why couldn't it just be over??? Why weren't we able to complete it the first time around so I could cross this off the list?)
Which translates to: Oh my God. We have to spend another week in Philly, watching our baby go through that AGAIN. Is there no mercy here? Can I handle this?
Left foot surgery- no date as of yet (and how can we schedule it with the VEPTR surgery looming. And why didn't we fix it when he was 4 months old like the other babies? And when are we ever going to fix it with every 3 month VEPTR expansions?)
Which also makes me wonder- is there anyway to do two surgeries at once? When are we going to have time for all the other parts when we have to expand his ribs EVERY 3 MONTHS for the next 2-3 years????
Right foot- club foot correction- who knows when? (the poor child has had about 4 rounds of corrections with casts 2-3 times weekly. When will this end? When? Why doesn't his foot stay? How much longer can we do this? The answer has to be for as long as it takes.
Knees- bilateral - no date either (because of the VEPTR surgery and the expansions, so again, when can we do this? How do we fit it in?
And the list goes on. So in 18 months, 6 surgeries with a huge 7th on the horizon and as you can see numerous surgeries to follow, I am frustrated.
I am upset we didn't fix other things earlier. I feel like we were so concentrated on the club foot (and why I wonder?) and now his left foot is going to be a very tough surgery. I am worried that if we don't fix his left foot soon, he may not be able to weight bear on it and if he can't do that, he can't stand/walk. And if we missed that boat because of timing and not fixing it earlier I will be crushed. So I have all this panic sitting in my stomach lately and I have no control. His lung/rib cage needs to be fixed first. And you can't operate again for 3 months because his lungs need a chance to fully recover from the surgery and then as I have mentioned, it's time for an expansion. And does the expansion trump the foot? After the expansion he will need to heal and after the foot he will need to heal. I feel like with the exception of healing time, the next year(s) will be spent in the hospital.
Frustrated.
Some of you may wonder how I could have a list of things to be done to Owen. It may seem detached or cold even. But for those of you who have children with special needs that have what seems like an unending amount of surgeries or body parts that need fixing, I would venture to guess you understand completely. I have to be detached or even a little cold when it comes to thinking about these things. Otherwise, every time I scheduled our pre-surgical appointments and geared up for another round of hospital stays, sleepless nights, unrest and family upheaval, I would break down and cry or worse. And worse is not acceptable.
So I have a running list. A list of future surgeries, a list of body parts and potential treatments, a list of questions to ask about body parts and future treatments, ideas for therapies. And the list goes on...so to speak.
Currently my list also reflects my frustration and sadness and a little bit of "why me" or "why Owen". It looks a little like this:
Right sided VEPTR 10-4 (Oh why couldn't it just be over??? Why weren't we able to complete it the first time around so I could cross this off the list?)
Which translates to: Oh my God. We have to spend another week in Philly, watching our baby go through that AGAIN. Is there no mercy here? Can I handle this?
Left foot surgery- no date as of yet (and how can we schedule it with the VEPTR surgery looming. And why didn't we fix it when he was 4 months old like the other babies? And when are we ever going to fix it with every 3 month VEPTR expansions?)
Which also makes me wonder- is there anyway to do two surgeries at once? When are we going to have time for all the other parts when we have to expand his ribs EVERY 3 MONTHS for the next 2-3 years????
Right foot- club foot correction- who knows when? (the poor child has had about 4 rounds of corrections with casts 2-3 times weekly. When will this end? When? Why doesn't his foot stay? How much longer can we do this? The answer has to be for as long as it takes.
Knees- bilateral - no date either (because of the VEPTR surgery and the expansions, so again, when can we do this? How do we fit it in?
And the list goes on. So in 18 months, 6 surgeries with a huge 7th on the horizon and as you can see numerous surgeries to follow, I am frustrated.
I am upset we didn't fix other things earlier. I feel like we were so concentrated on the club foot (and why I wonder?) and now his left foot is going to be a very tough surgery. I am worried that if we don't fix his left foot soon, he may not be able to weight bear on it and if he can't do that, he can't stand/walk. And if we missed that boat because of timing and not fixing it earlier I will be crushed. So I have all this panic sitting in my stomach lately and I have no control. His lung/rib cage needs to be fixed first. And you can't operate again for 3 months because his lungs need a chance to fully recover from the surgery and then as I have mentioned, it's time for an expansion. And does the expansion trump the foot? After the expansion he will need to heal and after the foot he will need to heal. I feel like with the exception of healing time, the next year(s) will be spent in the hospital.
Frustrated.
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