Tuesday, October 27, 2009

Busy Busy Busy

Where to begin? Well, we had her 4 month check up last Friday. She gained 9 ounces in one week! Woohoo! She is now 9lbs 15 ounces (probably over 10lbs now).  I don't have to stress on her weight gain anymore. She is doing great! The doctor says she is looking good. Poor girl had to get 4 shots, but she is a trooper and survived.

The weekend was pretty uneventful. We went to the Young's house for football on Saturday. Sunday was a pretty blah day. No motivation to do anything but cuddle with Delilah and watch lousy TV movies. In other words, I wasted an entire weekend when I should have been packing. Procrastination has gotten the better of me. I will get to it soon. I work best under a tight deadline. 

Her sleep study was last night and it was MISERABLE. Poor baby had to be hooked up to a ton of probes. How they expected her to sleep with all that on, I have no idea. I do know that she was up every hour or so and wouldn't be settled unless I held her; not an easy task with all the wires. I really hope she doesn't have to have another one, ever. It doesn't seem like they can get an accurate read if she is waking up all the time. She sleeps through the night, no problem, when she is home in her own bed. 

Also, they left some of the sticky pads that held the probes on her chest and legs. They told me to give her a bath and they would come off easily. Not so much. I let her soak in the tub for about 5 minutes and then began pulling off the ones on her chest. Poor baby had crocodile tears. She has only had tears a couple of times and this was the worst I have seen them. I managed to get all the ones off her chest (left big red marks), but I couldn't do her poor little legs. They have so much hair and I didn't want to put her through it. So, I will be soaking her little legs, twice a day, in her tub with warm water and baby oil to help loosen them so we can get them off. She already gets poked and prodded so much that I just can't stand being the cause of any more pain then I have to. 

Hopefully now that the sleep study is done we will be able to start the Growth Hormone. More poking:( I wasn't able to wait to see the Doctor after the sleep study. We had to get home to sign for her medicine that would need to be refrigerated immediately. Fed Ex delivers early, so no time to wait for the doctor to make rounds. We hope to hear about the results tomorrow, but if not I will be calling to find out and will let everyone else know. 

Posts will probably be few over the next few weeks. Time to really get busy with the packing and moving. We close on the house Friday!!!! I will try to get Halloween photos posted as soon as I can. She is going to be so cute as a Flower Fairy. Hopefully the costume fits. Wish us luck on the move.

Thursday, October 22, 2009

Sleep Study Scheduled

Everything seems to be moving so fast. Monday night we will be having the sleep study. I'm glad that it is happening quickly but I am not looking forward to spending the night in the hospital. Hopefully all goes well and we will be able to start the Growth Hormone very soon, maybe even within that week.

In 8 days we will be closing on our house. Very exciting!!! However, I have yet to start packing. I better get a move on it. I finally ordered some boxes which should be here tomorrow or Saturday. Sunday will be a packing day for sure.

Delilah has been doing so well lately. She has started reaching for her toys. Her head control is getting better and better. Our big struggle is her weight. She hasn't been gaining enough. We have her 4 month checkup tomorrow and we will see what the doctor says. I am also trying to find a Nutritionist to help us find a way to get more calories in her. She eats well, but she only eats 16-20 ounces a day. I try feeding her more, but she won't take it. She knows when and how much she wants, no more, no less. Who would have thought I would have such a stubborn daughter?!?!

We have found a new pediatrician for her. Actually, two. I found a smaller practice in Pinson that only has 2 doctors. I like that a lot. I am not a big fan of the big offices with 4-6 doctors. You never know who you are going to see. At least with these new doctors, they will both know Delilah and will be familiar with her case, so it won't matter who we see. Also, one of the doctors went to medical school and worked with our Geneticist, Dr. Lose, until he went strictly to genetics. It is good to have our doctors well connected.

Well, time to get some things done around the house. I promise to post some pictures soon. Delilah will be 4 months on Saturday so you know that will be a photo op! Also, she has a new Auburn outfit for the game that I will have to get pictures of. Hopefully her cuteness will do the team some good. (No comments allowed from AU haters!)

Saturday, October 17, 2009

Wow! So fast!!!

Dr. Miller is AMAZING! We have already received our first shipment of Growth Hormone Therapy free of charge. Our case manager is working with insurance to get us approved to use GH, but while we want they wanted us to be able to start. Also, if insurance denies us the first time, while we are waiting on the appeal to process, we will receive another shipment of GH. We can't use it until after the sleep study and a nurse teaches us how to use it, but we are getting there fast. Our case manager will arrange a nurse to come out to teach me how to administer it once the Dr. gives us the all clear to start. It is all happening so fast. I'm so glad I called her. We are still waiting to hear about the sleep study, but I am sure it will happen soon.

On another, more ranting note...We are moving across town so I need to find a new Pediatrician. Someone closer to us as we tend to be in the office several times a month. It is important that I interview so I am comfortable with the care Delilah will be receiving. I was very shocked when I called one office and they rudely told me that they don't do interviews anymore. Quoting the ever lovely receptionist, "It's a waist of time." SERIOUSLY?!?! It is absurd for them not to take interviews. This doctor will be Delilah's main doctor for 18 years. I want to know that we are receiving the best care and that the doctor is willing to learn as much as possible about PWS. So any of you in the Birmingham area, stay away from Tots N' Teens.

Monday, October 12, 2009

Endocrinologist Success

We have made progress in the Endocrinologist hunt. I contacted Dr. Jennifer Miller out of Gainesville, FL today. She was shocked to hear I couldn't get in to see an Endocrinologist in my area until February. She said that is too long to wait. We need to get Delilah on Growth Hormone Therapy (GH) A.S.A.P. She was very friendly and eager to help. She is going to work with our insurance and get the ball rolling on the GH. She is also going to contact some of her colleagues and friends in Birmingham to get some of our tests completed so we can fast track the GH. Delilah has to have a sleep study before we begin. 

I am very excited to work with Dr. Miller. She is one of the three leading Pediatric Endocrinologists in the US who specializes in PWS. She comes highly recommended from all the other PWS moms I talk with. She is kind enough to work with us long distance. She would like to see Delilah, if possible, in the next 6 months so my goal is to make a trip to Gainesville after the first of the year.

The best part about working with Dr. Miller are the PWS clinics she holds in Gainesville. Not only will it be a great opportunity to see different specialists all in the same day, but it will also be great to meet other parents of PWS children. Right now, I only speak to other parents via the web. There are no support groups or other families that I am aware of in the immediate area. I am waiting on PWSA to start an Alabama State Chapter so that I might meet some other families in my area.

I will keep you all posted on the GH. While I am not excited about administering it (she will receive a shot at night, every night, by me or John), it will help her gain the strength she needs. We will do whatever it takes for her to grow up strong and healthy. 

Sunday, October 11, 2009

Pumpkin Patch

Fall is here! My favorite season! To celebrate, we took a trip to the Pumpkin Patch. John, Delilah, Bradley, Jennifer, and I had a really good time. John and Bradley really enjoyed the people watching. There are definitely some interesting folks in Alabama. Delilah slept through most of it, but I think she enjoyed looking at all the trees during the hayride. Here are some pictures from our fun day. (Just in case you can't see, I'm a red head again. Just couldn't resist.)

Thursday, October 8, 2009

Head Control

Delilah's head control is getting better and better. Just take a look at the pictures below. She didn't lift her head on her own, but once I helped her get it up, she held it up for a full minute! What a feat!!! I was so excited I grabbed the camera and shot a few photos. Her head control is getting stronger by the day. It is hard work for her to lift her head (as I type this she is passed out next to me). Her head size is normal for her age, but the rest of her body is a little behind. Hopefully she will start to gain much needed muscle now that she is eating so much better. I think she will be lifting her head all by herself by the time we move into our new house. 

Monday, October 5, 2009


Frustrations. I had our pediatrician referral us to a Pediatric Endocrinologist. We need to see one soon to discuss our options concerning the Growth Hormone Supplement and any other supplements that will help Delilah grow up lean and strong. Well, I finally got a call with the appointment date, FEBRUARY 25. Seriously?!? Is that really the soonest? I am in the process of trying to bump that up, but it looks like my best bet is getting on a cancelation list. This is unacceptable to me. Most of the other babies I have read about have been on Growth Hormone since they were a few months old. Delilah is already 3 months old, and by the time she sees this doctor she will be 8 months old. If she needs this supplement, we need to start ASAP. I might just have to go out of town to find a doctor. There is a really good one in Gainsville, FL, that many of the other mothers rave about, Dr. Miller. Some families fly all the way from Utah to see her. Her specialty is PWS patients. From what I have read, she attends many of the PWS conferences and is hands on with the families. My only concern is getting insurance to allow me to see an out of town doctor. I am really disappointed right now. I really wanted to get her in to see the Endocrinologist soon. I guess I'm just gonna have to fight for it. Time for Momma to put on her boxing gloves. Wish me luck.

Friday, October 2, 2009

Weight Update

Delilah had another appointment today to check her weight. Good news! She gained 5 ounces in 1 week. She is now 9 pounds 1 ounce. Much better then the 4 ounces in 1 month. We will go back in 2 weeks to make sure she is still gaining.

Unfortunately her pediatrician, Dr. Brookings, is leaving this office and her last day is Tuesday. I really liked working with her. I guess it is good timing, as we are moving clear across town and should find a new pediatrician anyway. Until the move we will be working with a different pediatrician in the office.