Our So-Called Life.

I talk with other Moms on the PWS message board, and get so much great info. Well, I was telling one of them about how I am waiting to get in with Dr. Miller. Her daughter sees her, as well as many of the others. She said the best way to get in touch with her is by e-mail, and she gave me her e-mail address. So, I e-mailed her and told her about our situation, and about how I wanted to get in to see her ASAP. She immediately responded to my e-mail and this is what she said.... Maegan, Thank you for your email. I am more than happy to see your son whenever you can come to Gainesville. You must have spoken with one of our secretaries who is not dedicated to dealing with my kids. For future reference Debbie is my scheduling secretary and will always get new babies in to see me ASAP (her direct # is 352-334-0877). Where are you located and when could you come to Gainesville? I am having a new baby clinic this Friday (7/2) but if you are far away that probably won't work, but if it...

Awake time!!!

Sweet Baby Cade's idea of "Tummy Time" Ok...So I just realized he is sleeping in all of these pictures...lol...I will get some ones with him Awake and post! :)

We went for Cade's weight check with the Pediatrician today and he only weighed 6lbs 14oz. I guess the clothes and diaper really did make a difference Tuesday!! So, he only gained 2 ounces since last Thursday...Bummer! We will go in again next week to check again...hopefully he will have gained a little bit more. I know with PWS in the beginning it is very hard for them to put on weight. I know it is only two ounces, but at least he isn't losing. He really is filling out. He can finally fit in his Newborn clothes. They also checked his iron and he is no longer Anemic. Now, I don't have to give him those yucky vitamins anymore. He cried his poor heart out when they pricked his foot. I have never heard him cry like that. It was an actual cry. I know I still haven't posted pictures, but I will tomorrow!  

Yesterday we had an appointment at Children's Hospital in New Orleans with the Geneticist. We of course already had the diagnosis, so we didn't get any new information. He didn't really tell us anything that we didn't already know. He just thoroughly examined him and took pictures. He also took a look at Jake and I. I asked him about getting started with Growth Hormones and he really didn't recommend starting them until we would see a need to. I don't really agree with that. He seems old fashioned, and not too up with the new research. I have found more than enough info as to why to start the GH in infancy. I am in the process of looking for a doctor that specializes in PWS. I have found a few, of course none close by. I have read a lot of great things about Dr. Jennifer Miller a pediatric endocrinologist in Gainesville, FL. She works together with a small team of different doctors that specialize in patient with PWS. They are constantly researching the syndrome...

Yesterday my Mom and I met with the therapist at The Center for Pediatric Therapy. She was AWESOME! They have some great therapist there! The atmosphere is really great too. She said Cade's tone was better than what she expected to see. He impressed her! I think he was worn out though, because he slept pretty much the rest of the day. He gets tired so fast. We will meet back again with her in two weeks to see how he is doing. Aside from that Cade is 5 weeks old. He has only been home for a little over a week though. Time has went by so fast!

Cade had to go the Pediatrician today for a weight check. Last Friday she said she wanted him to gain about an ounce a day. He gained 7 ounces!! I'm so happy he gained what he was supposed to. He was 6lbs 5oz last Friday, and today he was 6lbs 12 oz. We will go for another weight check next week to make sure he is still gaining. I sure hope he keeps it up! Tomorrow we are going to meet with one of the therapist at The Center for Pediatric Therapy. I have heard so many good things about them. She will just be doing an evaluation on him tomorrow. I'm ready to see how that goes. I planned on doing Early Steps and private therapy, but my insurance only allows 20 visit max for private. I will just have to see how things go I guess. I will update again soon...