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Health Updates **2005**-(summer) We are finally scheduled to meet with an endocrinologist (to discuss growing issues). We still need a general surgeon and are in the process of meeting with a pediatric plastic surgeon too. After months of working with a nutritionist, we finally decided to go on our own gut feeling with Sara's eating concerns. We stopped the tube feeds and she finally got hungry and learned to start eating... Now we just need to get her eating more and quicker. We have 2 months 'til school starts for first grade and hopefully she we're hoping she'll be eating well enough to go through the day without a tube feed. This is our #1 goal and we are so proud of Sara's huge jump forward after so many years of stuggling through this! **2004** Busy year! Sara still has a feeding tube - not much change there. The girls are in Kindergarten this year and doing great (both girls are already reading)! Currently the girls see: Orthopedics, Gastroenterologist (just Sara), Urologist, Nephrologist, Nutritionist, and their regular Ped. Dr., so it seems like every other week we have an appointment with someone. UTI's are still a big concern with Sara. Everytime she stops taking a medicine she ends up with another infection, therefore she stays on it for preventative purposes. We're looking for a new general surgeon - (our's retired) and also for a good plastic surgeon. |
| Physical Development *************************************************************************************** Both twins have done remarkable with their physical development. They regularly see the orthopedic Dr. at Children's Hospital who is very impressed with them. Alyssa has scoliosis (curvature of the spine) and an extra 1/2 segment of bone in her spine so she is being seen more frequently to keep an eye on the degree of change. Sara has 2 pairs of fused vertebrae in her neck, but still has fine mobility and range of motion. Both girls have absolutely no problems with their legs. (Are these the same girls we hoped would be able to walk?) It's remarkable and we're so glad! *************************************************************************************** |
| DOCTORS... ************************************************************************************ We've dealt with all kinds! We are forever grateful to all of the doctors, surgeons, nurses, assistants, and technicians that have helped us over the years! Even as time moves on and needs change we will never forget all the people who have helped us. In the beginning we had some very unusual circumstances, and it was tough to know which Doctors to trust and what to do when we were unhappy with the way we were treated or uncomfortable with the way something was being handled. From the time I was pregnant I had to figure out who I was going to trust. Luckily I had the best oncologists I could've ever hoped for! When I went to get my level 3 ultrasound to check on the babies that was a life changing day. That's the day it was confirmed that we had conjoined twins (I was 5 months pregnant and the gal who did the ultrasound told us we had "stuck babies"). While the technician was talented and very nice, the Dr. was not someone I wanted to continue to see. He strongly kept telling me that I had "options" about this pregnancy even though they were 5 months old and that due to a condition called Twin Transfusion Syndrome they would probably die or never thrive. The T.F.S. (a condition where one twin thrives taking most of the nutrients and the other twin diminishes) was also hard news to swallow. Even if I wasn't very far along and even if they did have a poor outlook, I could never take their life away! It was not in my hands it was in God's hands to decide what these babies futures would be. As it turned out that Dr.'s positive diagnosis ended up being wrong - they never had the syndrome, Sara just wasn't growing as big as Alyssa because she had an extremely tiny umbilical cord (When she was born at the University, they actually wanted to save it). We also were going to a surgeon who was very qualified and excellent at his profession, but was very arrogant and made us feel very frustrated. There were problems right from the start when we were trying to stress our concern that I may have the babies before he ever got a team together to prepare for the birth. (and they did come early with a sudden emergency C-section!). Even after the initial separation surgery, he treated us with such deliberate disregard, wasn't very understanding, and constantly made us feel snubbed (perhaps because of our decision to keep the media out of everything ?). We finally decided to change surgeons and then some of the Children's Hospital staff who work with the surgeon told us that we wouldn't be able to find another one... We didn't care if we have to travel in order to get what the girls need, but did want someone local to count on if there was ever a sudden problem. One clinic rep. who was more understanding of our position gave us some helpful info. and referrals to some leading specialists in other states in case we ever wanted them. The surgeon we ended up seeing was working private practice but was even in the same hospital! - He is currently retired. Just Remember - If you have had or are having a problem dealing with a doctor just remember you CAN always get a 2nd or 3rd opinion and any good doctor will NOT hold that against you. I think as long as you are respectful in doing so, it shouldn't hurt anything except maybe an ego. One Dr. may see things differently from another, be able to communicate better, or give you some valuable information. Especially when you are dealing with a life changing decision. If you wouldn't buy the first car or house you look at - why should you take the advice of one person in the whole world without checking out some other options first? Some people don't have many choices due to insurance policies, or where they live, etc. but everyone deserves the right to be treated respectfully. I think it's so important when you're going to pick a specialist to see regularly that you come home feeling that you got something out of the visit and that you're dealing with a trustworthy individual. We have seen so many different kinds of Dr.s over the years for these girls. As parents you have a responsibility to your kids to make sure they get what they need. If you feel you aren't getting the help you need then that Dr. isn't doing what he or she is getting paid to do. If you can't ever get in to be seen in a reasonable period of time, then let the Dr. know how you feel and that there's a problem. If nothing changes, consider going to someone else. You are accountable for your own health and the health of your children, so it is ultimately up to you to decide which specialist you choose. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ |
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Surgeries, Etc. 2004- This yr. we are planning for the girls to see a plastic surgeon. They have developed well, but the lack of tissue on their rear-ends has caused some issues. Alyssa's lower tail bone (coccyx) is right under the skin with no protection. (We all take that "padding" for granted! Think how many times you fell on your butt when learning to skate...) Then there's the bathing suit problems (without a "cheek" the bathing suit doesn't stay in place) and Sara also has quite a bit of heavy scarring and creasing that tends to show. They are already at an age when this sort of thing bothers them. 2003- Sara was hospitalized for severe kidney infection to her single kidney and sent home with a pick line to administer meds. every 4 hrs for 2 weeks... 2002- After further discussion and looking into, neither child will be able to have their colostomy reversed. At least when it comes to dealing with the bags and stomas they are in this together. There was discussion about what can be done as they get older. There will be some alternative possibilies when they're bigger. 2001- On Jan. 1st we spent the new yr. in the hospital with Sara. She had a G-tube put in. She recovered amazingly fast from the whole procedure. Unfortunately, the tube was faulty and the valve leaks, but rather than going back in and having it redone, we have just dealt with it (Gauze & Tape)... 2000- Alyssa went back once this yr. for a condition called anal prolapse (the tissue that formed the anal opening became inflamed and problematic). It went smoothly and the procedure and recovery were quick. She felt much better. The girls also had a series of testing done to find out if they'd be able to have their colostomies reversed. The results showed Alyssa as a poor candidate as she has almost no muscle control. Sara has a much better chance at success since she (surprisingly) ended up with more muscle control. Dr. is willing to try reversal with Sara down the road, although continence will still remain an issue. He basically said, "...It is a possibility that with some training and a bowel management program she may have success (success- meaning a reasonable way to manage it and stay clean)... We dont know what will happen until we try and it will be a challenge, but if it didn't work out, we could always reverse it back to a colostomy again...". This wouldn't be done until she was ready. She would need to gain weight and be able to communicate with us better... This we felt was a much better answer than what we were initially told when the girls were younger. |
| This page is to try to keep everyone posted on how the kids are doing... Now that the girls are older and there are less health concerns than there once was, but I will continue to post significant changes and updates of what they've been doing.... |