Happy Anniversary to Us!

Officially - May 29 marked 3 years for us. We've been through alot in those 3 years. And if you think about it, exactly half the time (18mths) I've been pregnant. Chad reminds me often of how happy he is that it's over. I must have been moody or something I guess. =)
We spent a few days in Pigeon Forge, TN at this amazing bed and breakfast called Mountain Harbor Inn (check out www.mountainharborinn.com). We had a great time just to ourselves. Both sets of grandparents were kind enough to relieve us of the babies. This was the first stress-free, kid-free, enjoyable trip we've made in FOREVER. We went horseback riding, took a boat out on the lake and grilled steaks, went to Dollywood and Splash Country, and the hotel served us breakfast every morning and candlelit desert every night.
So now we're back home and getting back to the norm. Morgan is with her dad this week and Brady has been very sick. When she gets home and Brady is better we can't wait to take them to Splash Country. Our kids LOVE water!
Peyton is growing - we really noticed it when we got him home. And he smiles so much now! He is such a happy baby. Today we had a few ladies with Early Intervention Services come to the house to see him and set goals for him. We will have a teacher coming to interact with him biweekly. Also we're finally getting somewhere with his physical and occupational therapy. We now will be going to Wellmont Rehab in Kingsport. Appointment is pending but definitely will be next week. He still sees Dr. Madigan in Knoxville and gets another cast change next week; however, I have been working on getting this doctor at UVA to see him. He will be coming to Washington Co. Health Dept. this coming Tues. for a clinic he does just twice a year. I really want him to see Peyton because he specifically works with hip dysplasia in newborns. Pray hard because this clinic is full and the health dept. refused to sign him up for this one, but I called the doctor myself and begged his nurse so she is going to speak to him about Peyton this evening, gather his records, and call me back tomorrow evening. It may be that this doctor won't do anything YET with him being so small, but this sounds more promising than Dr. Madigan's treatment plan, at least until Shriner's gets underway. We still haven't heard anything. Of course it all still means more traveling . . . but we'll go to the ends of the earth if we have to! He is out of network too but we just don't have a choice if we want to find a doctor who will aggressively treat him.
On another note - we're making progress with the house. We only have the kitchen left to tile - both bathrooms are finished! Chad did a great job and it looks wonderful! We also got the front door replaced and it made a huge difference. We have someone coming to pour concrete for the walkway tomorrow. Once all that is behind us and a few little touch ups here and there, we'll have the house on the market! We are praying for enough equity to clear a decent down payment on the next house and lower our payment since I am not working. With everything we've done to this house over the last couple of years we should come out well.

Introduction of Peyton and and Last Year of Our Lives

Last summer (June) I was diagnosed with a neuromuscular autoimmune disease called Myasthenia Gravis. Its a disease where my body produces this antibody that blocks the nerve impulses to my muscles and causes weakness and muscle fatigue. It's really not a bad case of it either, my left eye muscle gets weak from time to time and my eyelid droops as a result. Lack of sleep or stress triggers it. I take medicine to correct the symptoms. In July I became pregnant with Peyton and was referred to a high risk doctor to watch the pregnancy because they thought the pregnancy would cause my symptoms to worsen. Not the case - I was perfectly fine. Just before Thanksgiving I had my 20 week level 2 ultrasound they discovered he had some severe abnormalities with his limbs. We were devastated. My doctor knew what it was and actually encouraged an abortion but still referred us out. We flew to Children's Hospital of Philadelphia a week later where he was formally diagnosed with Arthrogryposis Multiplex Congentia. It was caused from the Myasthenia Gravis I have. The antibodies were going to his bloodstream and blocking his nerve impulses. This is called transient myasthenia gravis. Only a handful of cases have ever been documented and most babies died. The arthrogryposis itself is uncommon, but what makes the difference is the disease I have causing it. The weakness and lack of movement in the fetus would usually cause abnormal lung development and respiratory insufficiency was the cause of death. The doctors at CHOP suggested the only hope for him was plasmapheresis. I would have to have it every week until delivery to filter the bad antibodies that were attacking him from my blood. Basically they take all my blood out, and replace my plasma with a synthetic. This would be the first time this would ever be performed on a pregnant woman from the time of diagnosis until the delivery. The doctors here at home weren't experienced with doing this so we traveled to Duke every week for me to have this done. It took approximatley 5 hours to do the procedure and do the NST monitoring/ultrasounds afterwards. Oh it was awful. At 32 weeks we had to temporarily move to Duke until after the delivery. There were almost instant improvement with Peyton's overall condition. The damage to his limbs was already done and nothing could really be done about that, be he started thrusting his trunk and moving his head around more - the weakness was subsiding. He was delivered at 39 weeks via classical c-section, (they cut straight up and down to lift him out of me with out damaging his stiff limbs); weighing 7lbs 2 oz and 19 in long; and spent 12 days in the NICU. In the beginning he had a lot of trouble breathing and was almost placed on a respirator but after the first week he stabilized all on his own with only the help of an oxygen tent/nasal canula. He had a feeding tube until he learned to eat on his own and then after that he was sent home and we got to return to Tennessee. No doctor at Duke predicted he would live, much less have such a short stay in the hospital. He's still doing great and packing on the pounds. Peyton has a very severe case of arthrogryposis. He is unable to move his toes, fingers, feet (they are both clubbed), hands (which are clubbed as well), wrists, and his elbows and knees will not bend. The movement at the shoulders and hips is minimal. Both hips are dislocated. His limbs are shorter than they should be and he has abnormal muscle development, some muscles are missing. He will require many reconstructive surgeries but usage of his limbs will depend on what muscles he lacks. If there is no muscle then he will never be able get full function from his limbs. We don't know how much he will be able to do for himself, or if he'll ever walk. But God is clearly working in his life and we remain positive. We're trying to get set up with Shriner's. Until then we travel to Knoxville biweekly to see the pediatric orthopedist. They currently are treating his clubbed feet with casting that has to be changed out every time we go. He will be in casts for the first year of his life. He will soon be seeing physical and occupational therapists weekly, and the doctors at Duke are going to follow his progress. He will be in many medical journals to come and ETSU has already done a case study on his condition. My tubes were tied and he is the end of the road for us. The recurrance rate is very high and likely another baby would end up the same as Peyton. We have 3 babies though, our cups runneth over. We run our tails off day after day and our house looks like a daycare center.
SO anyway, we'll continue to report the progress - some of you know that we're on a hunt for the right doctor for Peyton. We want someone a little more aggressive about treatment than what his current doctor is.