Tuesday, March 31, 2009
Friday, March 27, 2009
The highlights included:
- Seeing the baby's spiky hair on his head.
- Seeing his fingers spread out for the first time.
- Seeing him practicing his breathing.
- Learning that I am past the point of requiring steroid shots for his lung development.
- My fluid is up to 5.4 and seems to be remaining stable.
- C-section date scheduled if all continues to go well for April 21st since he is still breeched!
- Not being on bed rest or in the hospital again this week!
Tuesday, March 24, 2009
On January 2nd, John and I went in to have our first ultrasound. We found out that day that our baby was a boy. We also found out his limbs looked abnormal. His feet appeared to be clubbed and his wrist's severely contracted. We have learned a lot since that day in Jan. Chromosomal and known genetic disorders have since been ruled out. Our doctors think our baby has arthrogryposis. Below is a description of arthrogryposis so you can get a better idea of what it means. There are still lots of unknowns and after he is born will have more answers. Right now we are just praying, waiting, and hoping for the best.
I have also had trouble with low amniotic fluid. John and I go in every week for an ultrasound to check the amniotic fluid index. This last week it was 5.0, which has been the cut off in the past for being admitted to the hospital for bed rest. The Dr. we saw this past week also looked at my non-stress test (which monitors the baby's heart rate and movements) and determined the baby is not in distress. I will have another non-stress test on Tuesday this week and another ultrasound on Friday. We are trusting the Lord through this process and know that He is in control. Our prayer is that He is gloried through us and this little life inside of me. Thank you for your prayers and support!
WHAT IS ARTHROGRYPOSIS?
Arthrogryposis, also known as Arthrogryposis Multiplex Congenita, is a rare congenital disorder that is characterized by multiple joint contractures and can include muscle weakness and fibrosis. It is a non-progressive disease. The disease derives its name from Greek, literally meaning 'curved or hooked joints'.
There are many known subgroups of AMC, with differing signs, symptoms, causes etc.. In some cases, few joints may be affected and may have a nearly full range of motion. In the most common type of arthrogryposis, hands, wrists, elbows, shoulders, hips, feet and knees are affected. In the most severe types, nearly every joint is involved, including the jaw and back.
Frequently, the contractures are accompanied by muscle weakness, which further limits movement. AMC is typically symmetrical and involves all four extremities with some variation seen.
To date, no prenatal diagnostic tools are available to test for the condition. Diagnosis is only used to rule out other causes. This is done by undertaking muscle biopsies, blood tests and general clinical findings rule out other disorders and provides evidence for AMC.
While there is no reversal of this condition, individual quality of life can be greatly improved. As each person will respond differently, and will have different needs, a combination of therapies is beneficial. Physical therapy including stretching (may include casting, splinting of affected joints), strengthening, and mobility training are often provided to improve flexion and range of motion to increase mobility. Occupational therapy can include training in ADL and fine motor skills as well as addressing psychosocial and emotional implications of living with a disability. Since there is a variety of mobility impairments, individually tailored orthopaedic correction is often beneficial. Orthopedic surgery may be elected to correct severely affected joints and limbs and symptoms such as clubfoot, hernia repair and correction of unilateral hip dislocation, in cases where these surgeries improve quality of life.
Individuals with AMC are aided by vigorous therapy and in some cases surgical intervention. This varies to some degree, depending on the severity of mobility reduction. AMC is not a progressive disorder. Typically these individuals have normal cognition and speech and therefore the potential for productive, rewarding, and independent lives.
John and I were so happy not to have to go the hospital this weekend that we thought we should take advantage of not having anything going on and spend a night on Vashon Island. This Island is only a 15 min. ferry ride away but is a different world than Seattle. It is a small town with lots of farms and horses. We had a great time together!