Our So-Called Life.

So, It has been 5 weeks since Cade started GH and Dr. Miller said sleep study needs to be scheduled after being on them for 6 weeks. She gave me the name of a Pediatric Pulmonologist in Baton Rouge that has experience with PWS. He worked under her for a couple years in Florida. So, I called 4 weeks ago and had to leave message for the person that handles them to call me back. A week went by she never called, I called back and got voicemail again...Her voicemail says "If this is about a message that you have already left, please do not leave another message." Or something to that effect...So I have been trying to be patient. Well, I called back about a week ago and said I wanted to talk to her, not leave a message. I talked to her, explained my situation and that I needed to get my son in for a sleep study asap. She said she would be getting with the doctor and calling me back because we would need a consultation first. Another week later, and still no call back.....I can'...

Well, It has been a while since I have posted. I do have a few updates. I spoke with Christy, Cade's Dietitian in Fl and she wants Cade to start taking 3 ounces every 3 hours. So, we are and he is doing great with it! We went to the Ped. last Thursday, and he weighed in at 8lbs 15oz. (I will just call that 9 lbs :) and he was 22 inches long. He is def. growing, still slower than what would be considered typical..but he is making progress! As of today, he is now taking all 3 supplements...Fish oil, CoQ10, and L-Carnitine. I have not noticed a huge difference in awake time and energy yet..but didn't really expect to right away. Cade's main goals right now in PT and OT is his ability to reach and swat/grab at toys and gain head control. His arms and upper body are much weaker than his legs. We have been working with him and you can tell he wants to grab them so bad, but just can't get the coordination to do so. He will get it in no time! He loves to eat his hands and arms ...

Yesterday, we decided to go to the Splash Park in Bayou Vista. We only stayed for about an hour but Carter had lots of fun! It was a really cute little place for kids. They had plenty of shade for Cade, and of course he was content like always. Carter & Cade with their shades on Cade chewed on a frozen teether to keep cool Dr. Miller called in the prescription L-Carnitine supplement for Cade to start. His first dose was yesterday! There has also been a lot of talk lately on the message boards about this "cactus plant" that is under research to suppress the appetite in people with PWS. This extract is now being studied in the PWS population. Substances and medications don't always affect people with PWS the same as they would affect you or me. So, the research will tell if it is safe or effective for PWS. There is an Australian family who has experienced very good results from it. So, hopefully the research will be a success, and by the time Cade is food...

3 Months Old (HaHa, I just noticed he's saying PEACE!) I can't believe it, 3 months old already! Well, I have been trying to capture every little moment, so here are some pictures I thought I would share!   All smiles in the morning... Working on his head control Lifting his head He LOVES his mobile!!! Such good stimulation for him!

"At the end of the day, faith is a funny thing. It turns up when you don't really expect it. It's like one day you realize that the fairy tale might be slightly different than you dreamed. The castle, well, it may not be a castle. And it's not so important that it's happy ever after, just that it's happy right now."

Well, Cade went for a weight check yesterday, and to get the rest of his immunizations. He is weighing in at 8lbs 6oz...a 6 oz gain in 10 days...that is about the rate he has been gaining. He is getting to be such a big boy :) I also decided to just finish up the rest of his immunizations. He got 3, and he has been real sleepy as a result. I think I will go back to spacing them out for the future. We no longer have to go for weekly weigh ins. His next appointment will be for his 4 month check up. We had an appointment at Ochsner to see an ENT. Our experience there was great! I was very satisfied, and will also be seeing a Pediatric Gastro there to monitor Cade's reflux issues. Cade seemed to like it too...While waiting for the doctor to come in he was literally cracking up (without making noise), if you can imagine that. It was hilarious! My Mom and I were laughing so hard we could barely contain ourselves. He had the cheesiest grin, and he would do this little chuckle. I...

Well, we started the GH Friday, and so far so good. It is really easy to do. I just need a little help holding him so he doesn't move. He is on the lowest possible dose for now, and we will slowly find what dose is right for him. Every child is different, so it is not possible to know what dosage he will need right away. Well, we have PT coming this morning at 9 am, so I will post more later. Just wanted to let everyone know that we started the GH!!!