I hope you'll forgive me, as I'm feeling a bit introspective today. We can blame the pregnancy hormones, I guess.
It's just strange to me - how "normal" can change from person to person. I have friends with kids who have no physical or mental disabilities, there are kids like E with a mild physical "issue" (funny - I have a hard time classifying it as anything else), there are friends with kids who have major medical problems looming constantly overhead (ie a life-threatening food allergy or a major issue with asthma), and I know of kids with truly life-altering disabilities who are wheelchair bound and require round-the-clock nurse care. What becomes the new normal for us - daily exercises, brace donning and doffing for naps and nighttime, repositioning him during his play to better use the affected leg, watching to see how E's foot responds to the therapy, and prayers for flexibility; and what is the normal for my friends with kids with medical issues - like my godson whose parents have to restrict where he eats, read all labels on everything, and cook way more often than they ever wanted to in order to provide their son with safe, fun, foods so he won't be left out due to his life-threatening egg allergy. These are the things you don't think about, or at least I didn't, when I was pregnant the first time. It's just not what I imagined when I dreamed about life with our new little one.
Now, I hope it goes without saying that I wouldn't trade my child for anything in this world, and I'm not thinking that the small things we do every day for E's foot is in any way comparable to our friend of a friend whose son will not move around outside of his wheelchair for however long we are blessed with his short little life. But I was describing our trip to St. Louis to some friends without kids, and I talked about the changes in how we were treating E's foot and the possibility of another trip out there next summer to either just have Dr. Dobbs re-check it or to plan for a few months stay to fix it again, and to her it just seemed so amazing. It's normal for us. It's actually way better than the worry and concern from last month when we thought E would be facing a foot reconstruction surgery because it wasn't healing perfectly. But to my friend, it was outside of her perspective of normal.
It's just striking me as funny today. Happy Friday!
Friday, July 29, 2011
Sunday, July 17, 2011
Fell off of the wagon...
It's been a busy 3 months, and I've been lousy at keeping up with this blog. Death in the family, house under contract and closed, packing up the house, and chasing after a 21 month-old. Oh, and going through the first trimester of pregnancy. Lots of positives, but some things had to give, and unfortunately this blog didn't make the list.
When last we spoke, the hubby and I were discussing taking E to see Dr. Dobbs and whether or not to stay with Dr. H's protocol. Well, the more we talked, the more we decided that Dobbs protocol makes so much more sense, and it also made sense to take E to see him to have his foot checked to make sure it was healing correctly. We opted to take E out of the AFO during the day, and his gait improved SO much in a short amount of time, as long as he was wearing shoes. We added stretches, and I took E's brace to an orthotist friend of mine who showed me how to adjust it so the affected foot was in a neutral position. My only concern was in the last month - we were staying with my parents, who have a pool, and it really gave me an opportunity to watch E walk without shoes on.
I keep him in shoes, as I feel like given his history, he needs the support. With shoes on, you can't tell there's any difference right vs left. While barefoot though, he walks with the right (affected) leg rotated out and he does not roll off of his toes (termed toe-off in PT speak). This can be a common way to accommodate for a limb that is weaker (he was in casts for 5 months and then a solid AFO - weakness would not be surprising), and it can be habit (he favored the right side while casted because he couldn't use it), but it definitely made me nervous.
The visit to Dobbs however, helped put me at ease. He agreed with Dr. H that, according to the x-rays, E's foot was only partially corrected. While E's range of motion is fairly good, and he can use the foot in a functional matter, there is some rigidity at the end ranges that concerns Dobbs. If we lived closer he would suggest a re-do of the procedure (casting and pinning) to complete the correction. We don't, however. Dobbs said that most kids with a correction to E's level and some mild rigidity remaining go on to do fine, but there's no way to tell for sure (obviously). His recommendation was to continue with stretching, make a few further adjustments to the nighttime bracing (bringing the unaffected limb into a more neutral position because it makes no sense to have him braced into outward rotation anywhere and we'll try toeing him in a little bit on the affected side to increase the overnight stretch), and just to watch how E does. They like to have corrections done by the time the patient is 3, so we'll have until October of next year to see how he does. If he continues to do as well as he has up until now, we're good. If his foot gets tighter, the kids and I will be taking a trip to St. Louis for a few months next summer for a revision.
In the meantime, we're moving to south Florida and preparing for a new job (hubby) and a new baby and life with an increasingly active toddler. Life is good!
When last we spoke, the hubby and I were discussing taking E to see Dr. Dobbs and whether or not to stay with Dr. H's protocol. Well, the more we talked, the more we decided that Dobbs protocol makes so much more sense, and it also made sense to take E to see him to have his foot checked to make sure it was healing correctly. We opted to take E out of the AFO during the day, and his gait improved SO much in a short amount of time, as long as he was wearing shoes. We added stretches, and I took E's brace to an orthotist friend of mine who showed me how to adjust it so the affected foot was in a neutral position. My only concern was in the last month - we were staying with my parents, who have a pool, and it really gave me an opportunity to watch E walk without shoes on.
I keep him in shoes, as I feel like given his history, he needs the support. With shoes on, you can't tell there's any difference right vs left. While barefoot though, he walks with the right (affected) leg rotated out and he does not roll off of his toes (termed toe-off in PT speak). This can be a common way to accommodate for a limb that is weaker (he was in casts for 5 months and then a solid AFO - weakness would not be surprising), and it can be habit (he favored the right side while casted because he couldn't use it), but it definitely made me nervous.
The visit to Dobbs however, helped put me at ease. He agreed with Dr. H that, according to the x-rays, E's foot was only partially corrected. While E's range of motion is fairly good, and he can use the foot in a functional matter, there is some rigidity at the end ranges that concerns Dobbs. If we lived closer he would suggest a re-do of the procedure (casting and pinning) to complete the correction. We don't, however. Dobbs said that most kids with a correction to E's level and some mild rigidity remaining go on to do fine, but there's no way to tell for sure (obviously). His recommendation was to continue with stretching, make a few further adjustments to the nighttime bracing (bringing the unaffected limb into a more neutral position because it makes no sense to have him braced into outward rotation anywhere and we'll try toeing him in a little bit on the affected side to increase the overnight stretch), and just to watch how E does. They like to have corrections done by the time the patient is 3, so we'll have until October of next year to see how he does. If he continues to do as well as he has up until now, we're good. If his foot gets tighter, the kids and I will be taking a trip to St. Louis for a few months next summer for a revision.
In the meantime, we're moving to south Florida and preparing for a new job (hubby) and a new baby and life with an increasingly active toddler. Life is good!
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