Learning about BBS

These are some of the BBS sites that I have found the most helpful in learning more about BBS. The first two are the ones I go to the most for answers. There are also very touching stories of other BBS families.

www.lmbbs.org.uk/
mlmorris.com/lmbbs/page1.html
hmg.oxfordjournals.org/cgi/content/full/10/20/2293
www.ncbi.nlm.nih.gov › Bookshelf › GeneReviews
www.blindness.org/index.php?...292%3Abardet-biedl-syndrome

Savannah and Xander's Well Child Checkups

I took Savannah and Xander to the pediatricians this morning. The doctor was with us for almost an hour and a half. I felt bad. I think it went into his lunch break. He was so nice and made me feel like he rally cared. He copied and took all of the information that I gave him and their other doctor to look over. They are going to go over everything with me and explain "in English" what it all means. He answered all of my questions and went over the kids appointments. Savannah and Xander have opposite problems. Savannah has gained a little over 3 pounds 99% in two months, which is not good. We have to go to monthly weigh in checkups and I have to notify the endocrinologist. She's also gone down to the 35% for her height. Xander has gone from the 19% for weight to 10%. He's lost some weight. He has also gone from 3% for height to 1%. Their going to watch him and he told me to give him 6 ounces for every feeding.I'm so glad I switched their doctor. They are so much more on top of everything. I finally feel like I'm handing everything over to their doctor for them to tell me what I need to do.

Xander's Trip to the Emergency Room

Today, after I had gotten back from my doctor's appointment I went online to check my email and saw that one of the doctors at Xander's pediatrician's office had replied to my message. He had wanted me to update him on how Xander's doing. Xander is still crying when he has a bowel movement and his anal fissure is getting worse. He said that he wanted me to take Xander to the ER. He wanted a stomach specialist to look at him. Court came home to go with me to the ER. I kept trying to hold myself together and not cry. I'm known for being very emotional. I couldn't help but think of the worse things that could happen. They looked at Xander and one of the nurses noticed his extra figure and then his toe. We had to explain. The doctor and nurse were very interested in how his finger was fused together with his hand. It seams kinda weird when people notice it. I forget about these little things. It's always interesting when someone notices. They are very absorbent people. That was only the second time someone has commented on Xander's extra finger . Most of the time I forget about Xander's extra figure and toe and even Savannah's and her Uterus, but there will always be the scares. Savannah has many scares. Today I realized that I'm not ready for anyone of my children to go through another surgery. I can't bare to think of the pain of when they take my child away and not knowing the outcome. I'm so afraid. I truly feel like hiding away in my bed and crying until the tears don't come anymore, but, I can't. I have to be brave for them. I can't let my weaknesses overcome me. I have to be strong for them and I have to be positive and let them know every day how much I love them. I have to kiss them and give them hugs. I have to let Savannah go to school. I have to talk to all of the doctors, therapist, and people that will help my children, and know what I'm talking about. I have to be their mother.
They had radiology do another X Ray on Xander. The worse part was waiting for the doctor to come back with the results. It seemed like forever. Xander fell asleep in my arms and I kept looking at his precious little face, and trying to take in every movement and to remember his every feature. He looked so small and perfect. It scares me on how fast a life can be taken away. I said a silent prayer. I felt comforted. As long as Court is with me everything will be okay.When the doctor finally came back he told us that Xander still has air in his intestines, stomach and colon. It looks the same as it did for the last X Ray, and from what they could see not life threatening and the movement, but want's us to get in to see the GI specialist at PC as soon as possible. I know that they say he's okay right now but I just can't get rid of the constant fear and thoughts that something is very wrong with him.

Savannah's Update

I had my first meeting with the lady from GIANT steps on Monday. Savannah's going to be tested for autism on September 13th. The lady was so nice and she already wants to sign Savannah up for their program. There's a long waiting list. Hopefully she can get in next year! I also had a meeting with her Preschool teacher at the Elementary school. We decided to have her go Tuesday through Friday. Because of all the extra classes she will be having she wouldn't have much time in the classroom if she only went for two days like she did last year. She also talked with the vision therapist and were going to try to have her work with her. I really love her teacher! It makes it a lot easier. I'm going to try my best to not cry until after she gets on the bus on Tuesday. I hope Savannah is like she usually is and can't be happier to be leaving me and go play. She loves going to nursery and to play at her friends and cousins. If she isn't I'm not sure that I could hold it in if she starts crying when I put her on the bus. I feel bad though, because I'm going to have to pick her up early from school on her first day of school because she and Xander have their first check up with their new Pediatrician .