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...

Welcome to Holland I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... See More… When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. But there's been a change in the flight plan. They've landed in Ho...

So, yesterday when I found out that Cade definitely had PWS I became a member of the PWSA Foundation. It is so great and there is endless information through them. When speaking to the lady she said she would get me set up with someone in my area who has a child with PWS to talk with. Today I received a call from her and she is super nice. Her son is 6 years old with PWS. She also told me about her best friend that lives here in Houma who has a daughter with PWS. I really look forward to keeping in touch with them and learning a lot through there experiences. I think it is amazing how I never heard of this before and now it is such a huge part of my life. It is so great that I have people so close to talk with and relate to. I also was able to do all the paperwork today needed to get Cade started with Early Steps. After all the initial steps, he should be able to be starting therapy through them within about a month. Seems like a great benefit! Yay for early intervention... : ...

The waiting game is finally over...The doctor called and at four weeks old, we finally have a diagnosis. Like I had felt all along Cade has Prader-Willi Syndrome. Compared to the other possibilities it could have been, I am relieved. I know we will none the less have a long, hard road ahead, but I also know that it could be a lot worse! I will focus on what each new day brings and not dwell on what the future may hold. I look forward to seeing Cade progress and amaze us with his new achievements. We will still follow up with the Geneticist on the 22nd of this month and go from there. Having a diagnosis definitely is a plus though! Now we can get a head start on treatment and therapy. I am definitely thankful for that!!!

The doctor said to call back today to check on the results for the testing they did to check for Prader-Willi and Angelman's Syndrome. I waited all day for him to call me back just to say that they are of course not back yet. He said he will call me tomorrow if anyone calls him on them, but if not then for me to call and check back next week...Ugh! Oh well, I'm not going to dwell on it. I did get to speak with someone from Early Steps about getting Cade started with therapy. She will come out to my house this Wed. to evaluate him and get things set up for him..Yay for that! I plan on doing the therapy through Early Steps as well as a private therapy center we have in our area. I figure the more the better for him. Aside from all that Cade has been doing great with his feedings and seems to be staying awake a little more throughout the day. Hopefully he is gaining some weight too! We will go back to the Pediatrician at the end of the week to check on hi...

Ok, so where do I start? Well, on May 14th, 2010 Cade was born at 37 1/2 weeks weighing 5 lbs. 13 oz. He was taken to the NICU for observation due to minor respiratory problems and remained there for almost a month, 25 days to be exact. Little Cade is finally home with us, Thank God! After 4 days of being in the NICU it was discovered that he had Hypotonia...so the tests began. He had a CT Scan, EEG, Cranial ultrasound, and plenty blood work. Everything came back OK. The low muscle tone led to very poor feeding which is what kept Cade in the NICU for so long. The Neonatologist consulted with a Geneticist who pointed him in the direction of some more specific testing based upon his symptoms. We are still awaiting those results, They are testing for Prader-Willi Syndrome and Angelman Syndrome. We should get those results sometime this week. I will update soon...