A bit of history:
According to our perinatologist, around the 5th or 6th week of pregnancy there was most likely a "rupture" or a tear in the amniotic sac Jordan was in (typical sac supposedly and completely random with no genetic issue - our chance of this happening again are as high as anyone elses and no one knows what causes it to rupture other than injury which I didn't have). This/these tears caused sticky "bands" or strands to float around in the sac with her. Her limbs were entangled in them (and her face according to some specialists but some are still wondering if the cleft could really be caused by the bands). In wrapping around the developing limbs and digits blood supply was cut off or limited, causing constriction rings, loss of the tip of a toe, webbing of fingers and toes, extra puffy round balls of skin and it appears a band caught the end of her toes on her right foot then pulled that foot up against her shin and got tangled or wrapped around her calf. Commonly with this situation spinal tethering happens due to scar tissue but was ruled out in her case. More often, I should say, most often this situation results in death or at the very least amputation of limbs and fingers and toes. Many researchers believe that way more miscarriages are a result of this but that it's so early there is no way to really know for sure. The bands wrap around the infants body causing life threatening problems thus causing the miscarriage.
Jordan has had her fingers separated, her cleft lip and palate repaired, some scar tissue removed from her eye area, toes separated, foot released from her calf, constriction bands and extra balls of skin/fat removed and bracing/casting to stretch the tendons and slowly get that right foot in a neutral position. She still has more surgeries to build a thumb for her "good" hand (ironically although it appears to be the best one it's the least useful without a thumb that works efficiently), re-work her nose, reposition her eye, put an artificial tear duct in her eye, and any subsequent surgeries down the road particularly due to her palate issues (orthodontic work, fistula closure, jaw distraction if necessary, etc.) and cosmetic stuff to fine tune things for her face.
As you've seen on the blog we've been struggling with her leg splinting/stretching/bracing/ situation. The brace that works well is almost too strong for her while the others aren't working at all. All of them cost money our insurance company won't give without a major hassle. A friend's mom works in an orthotic and prosthetic office. He is a Christian and goes to church with this friend. He agreed to see us at no cost. He advised us to see an orthopedic specialist to try serial casting again to determine if bracing will help. This orthopaedic surgeon did an x-ray and found that Jordan has a congenital vertical talus and delayed bone growth in at least that foot (but probably all of her bones). The talus is a bone in the foot. You can look it up online if you can find a good anatomy picture. Basically this bone in her case is tilted and not connected to the navicular (another bone - obviously). Casting won't help and surgery is the only option. Everything I've researched says the surgery needs to be done by the time the child turns two. Jordan will be two in September but this surgeon thinks we need to wait for her bones to be more ossified since it appears she is delayed. He says to wait one year.
My uneducated opinion after researching this to death online is that this talus situation was caused by her foot being forced into dorsiflexion (pulled up to her shin) and is not a result of another underlying neuromuscular problem or syndrome. I believe it is an isolated problem caused by the positioning of her foot in the womb.
We're waiting for an authorization to see a specialist at UCLA named William Oppenheim. He is the head of pediatric orthopaedics at UCLA so we are hopeful that if we can see him he can, at the very least, give us sound advice. Please pray that we would know for sure that this is the surgeon God would have see her and that it would be very clear. Jordan's pediatrician (who we LOVE and can't say enough good things about) is very laid back and suggests just not worrying about the bone growth (or Jordan's short stature) and just give it all some time. I, however, am not very laid back. :) When it comes to Jordan's medical care I am very proactive and cosider it part of my job as her mom to be diligent and proactive with her care. I often wonder how crazy her doctors think I am but at the end of the day I need to know that I did my best for her. I trust in the Lord for her care but I consider it my responsibility to push for the best treatment for her. (Pray that my people pleasing self continues to persist in her medical care despite worrying about what the doctors think when I question things and push for things)
In a nutshell -
New Findings:
- Delayed bone growth (probably just a late bloomer but I'm wondering if it could be delayed only in the affected foot due to vascular compromise)
- Congenital Vertical Talus (Rocker Bottom Foot) requiring surgery (concern of mine is that they have to mess with tendons which can get tricky, I've heard)
Concerns:
- Getting a doctor approved through insurance who is not part of the current group (the ONLY group) here in Orange County as a second opinion who could ultimately treat her alongside her other surgeon at UCLA, possibly pairing the surgeries next year like we've done in the past.
- Why her bone development is delayed (he said that looking at her x-ray she has a "baby foot")
- How this will affect her walking over the next year while we wait.
- Is it painful to walk on it for longer periods of time?????
- What her gait (the way she walks) will be like and also the muscle she will be able to access in her right leg considering her calf muscle was cut in half by the band.
Here's a website that describes her foot issue and if you are interested you can Google Rocker Bottom Foot and see photos. You'll probably be surprised at how similar her foot looks to the pictures.
http://www.emedicine.com/orthoped/TOPIC478.HTM
Sorry for the lengthy post but some of you like the details and I thought I'd recap some.
According to our perinatologist, around the 5th or 6th week of pregnancy there was most likely a "rupture" or a tear in the amniotic sac Jordan was in (typical sac supposedly and completely random with no genetic issue - our chance of this happening again are as high as anyone elses and no one knows what causes it to rupture other than injury which I didn't have). This/these tears caused sticky "bands" or strands to float around in the sac with her. Her limbs were entangled in them (and her face according to some specialists but some are still wondering if the cleft could really be caused by the bands). In wrapping around the developing limbs and digits blood supply was cut off or limited, causing constriction rings, loss of the tip of a toe, webbing of fingers and toes, extra puffy round balls of skin and it appears a band caught the end of her toes on her right foot then pulled that foot up against her shin and got tangled or wrapped around her calf. Commonly with this situation spinal tethering happens due to scar tissue but was ruled out in her case. More often, I should say, most often this situation results in death or at the very least amputation of limbs and fingers and toes. Many researchers believe that way more miscarriages are a result of this but that it's so early there is no way to really know for sure. The bands wrap around the infants body causing life threatening problems thus causing the miscarriage.
Jordan has had her fingers separated, her cleft lip and palate repaired, some scar tissue removed from her eye area, toes separated, foot released from her calf, constriction bands and extra balls of skin/fat removed and bracing/casting to stretch the tendons and slowly get that right foot in a neutral position. She still has more surgeries to build a thumb for her "good" hand (ironically although it appears to be the best one it's the least useful without a thumb that works efficiently), re-work her nose, reposition her eye, put an artificial tear duct in her eye, and any subsequent surgeries down the road particularly due to her palate issues (orthodontic work, fistula closure, jaw distraction if necessary, etc.) and cosmetic stuff to fine tune things for her face.
As you've seen on the blog we've been struggling with her leg splinting/stretching/bracing/ situation. The brace that works well is almost too strong for her while the others aren't working at all. All of them cost money our insurance company won't give without a major hassle. A friend's mom works in an orthotic and prosthetic office. He is a Christian and goes to church with this friend. He agreed to see us at no cost. He advised us to see an orthopedic specialist to try serial casting again to determine if bracing will help. This orthopaedic surgeon did an x-ray and found that Jordan has a congenital vertical talus and delayed bone growth in at least that foot (but probably all of her bones). The talus is a bone in the foot. You can look it up online if you can find a good anatomy picture. Basically this bone in her case is tilted and not connected to the navicular (another bone - obviously). Casting won't help and surgery is the only option. Everything I've researched says the surgery needs to be done by the time the child turns two. Jordan will be two in September but this surgeon thinks we need to wait for her bones to be more ossified since it appears she is delayed. He says to wait one year.
My uneducated opinion after researching this to death online is that this talus situation was caused by her foot being forced into dorsiflexion (pulled up to her shin) and is not a result of another underlying neuromuscular problem or syndrome. I believe it is an isolated problem caused by the positioning of her foot in the womb.
We're waiting for an authorization to see a specialist at UCLA named William Oppenheim. He is the head of pediatric orthopaedics at UCLA so we are hopeful that if we can see him he can, at the very least, give us sound advice. Please pray that we would know for sure that this is the surgeon God would have see her and that it would be very clear. Jordan's pediatrician (who we LOVE and can't say enough good things about) is very laid back and suggests just not worrying about the bone growth (or Jordan's short stature) and just give it all some time. I, however, am not very laid back. :) When it comes to Jordan's medical care I am very proactive and cosider it part of my job as her mom to be diligent and proactive with her care. I often wonder how crazy her doctors think I am but at the end of the day I need to know that I did my best for her. I trust in the Lord for her care but I consider it my responsibility to push for the best treatment for her. (Pray that my people pleasing self continues to persist in her medical care despite worrying about what the doctors think when I question things and push for things)
In a nutshell -
New Findings:
- Delayed bone growth (probably just a late bloomer but I'm wondering if it could be delayed only in the affected foot due to vascular compromise)
- Congenital Vertical Talus (Rocker Bottom Foot) requiring surgery (concern of mine is that they have to mess with tendons which can get tricky, I've heard)
Concerns:
- Getting a doctor approved through insurance who is not part of the current group (the ONLY group) here in Orange County as a second opinion who could ultimately treat her alongside her other surgeon at UCLA, possibly pairing the surgeries next year like we've done in the past.
- Why her bone development is delayed (he said that looking at her x-ray she has a "baby foot")
- How this will affect her walking over the next year while we wait.
- Is it painful to walk on it for longer periods of time?????
- What her gait (the way she walks) will be like and also the muscle she will be able to access in her right leg considering her calf muscle was cut in half by the band.
Here's a website that describes her foot issue and if you are interested you can Google Rocker Bottom Foot and see photos. You'll probably be surprised at how similar her foot looks to the pictures.
http://www.emedicine.com/orthoped/TOPIC478.HTM
Sorry for the lengthy post but some of you like the details and I thought I'd recap some.
Jordan's foot just before surgery at four months to separate the foot from the leg.
This one is Jordan's foot. Can you see the resemblance b/t hers and the one I found online?
Online through Google Images
Another photo found through Google.
2 comments:
Jen--I love reading your posts, because I know EXACTLY what to lift in prayer. I think it is GREAT that God gave Jordan a mom like you who does care and research and get proactive for her health. You entrust Him with the anxiety and pain that come in the whole process, but you use the brain he gave you to help Jordan. I heard once of a person who didn't ever lock their door at night because God would protect their family. What! God gave us locks to help us stay protected in this sinful world. In other words, God gave you to Jordan to help her with the imperfect health she has in this fallen world. Anyway, I am just trying--in a really wordy way--to say you are doing a GREAT job.
Jen: As I read through your post I began praying over each and every specific request. Thanks for keeping us all so updated on how to pray. I am praying that you guys can get into the doctor at UCLA and get sound advice!
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