Thursday, June 19, 2008

Orthopaedic Update

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)
- 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.
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.

Wednesday, June 18, 2008

Another Haircut

I cut Jordan's hair again (round two). I'm trying to catch the front up with the back. I figure if I keep cutting the back they'll eventually be the same length. :)
She's sitting in her new princess chair her cousin, Jayde, gave her. She doesn't really know what princesses are yet but she loves having a chair just her size.
I have some updates about Jordan's leg but I'l post it all tomorrow.

Thursday, June 05, 2008

Olympic Sized Prayer...

Our dear friend, Gabe Woodward, is in a swim meet tomorrow that is a precursor to the Olympic Trials. He swam in Greece for the good ol' USofA and is trying to qualify again.
Specifically pray that he will swim his 100m freestyle in 48 seconds - tops. More than that pray that he can be a witness to others he swims with and meets. Pray that even one person will know about Christ when Gabe is done swimming this meet.

He swims at 7:00 tomorrow morning (Friday).

Go Gabe - be bold and swim fast!!!!!!!!!!!!!!!!

Monday, June 02, 2008

Ear Surgery a Success!

Here she is on the way to the surgery center - so happy with her little Lamby thinking she's on an adventure with Mama up so early while it's still dark.

This picture is so cute. Here's where she just kept staring around at everyone but not moving an inch.

"Oh I'm so sleepy after that little nap." So sweet!

Ready to go home!

With her sticker..."I'm a great patient."

Yay! Jordan and Mama are home in time for breakfast. We left at 5:15 this morning, stopped at Starbucks and headed up to Laguna Hills for her procedure. The actual surgery itself took only 10 minutes but the prep and paperwork took over an hour. The doctor said that both ear tubes were out of place and that one of them (the ear she complains about most) was covered with wax and stuck in the ear canal. He said that same ear had quite a bit of fluid too. The better ear, the left ear, didn't have much fluid but the tube was out of that one too. He drained all the fluid, put in new tubes, antibiotic ear drops and then was done. She was so cute when I went in to get her in the recovery room. The nurses were cracking up at her. She was all wrapped up like a burrito and just dazed, trying to figure out where she was. On the way home she was fussing a bit and messing with her ears but overall she's totally fine, watching cartoons with Noah, playing with toys.