WHAT?!?

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.

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.

Beautiful Post

I have been reading through some blogs of other parents with prader-willi babies. It is not so easy to find these blogs, but when I do, I find the stories very helpful. They are not always pleasant, but it is good to see I am not alone.

I found a new blog today that I love. After reading 2.5 years worth of posts, I came upon the following post (I find myself asking this question a lot, especially during the tough moments. I love her interpretation of the answer.):

Did you ever wonder how mothers of special needs babies are chosen?

Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation.

As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint. . .give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a special needs baby."

The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a special needs baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it."says God. "I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied.

She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see, ignorance, cruelty, prejudice--and allow her to rise above them.
She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice"

3 Month Update

My little girl turned 3 months old Thursday. I can't believe it. I would say she is getting so big, but unfortunately that isn't the case. Friday she had a weight check at the pediatricians office. She only weighs 8lbs 12 ounces. She has only gained 7 ounces in a month. NOT ENOUGH!  It isn't that she doesn't eat, we just don't think she is eating enough. She will only eat 2-3 ounces every 3-4 hours. We try everything to get her to eat more, but she just stops after 3 ounces. I have even tried feeding her smaller amounts more frequently, but she won't have any of that. In order to put some weight on her we have switched her formula to one with more calories. Hopefully she will have gained some when we go see the pediatrician again on Friday. I also think she has had problems eating because she has a slight case of Thrush. We have her on medication now, so hopefully it will clear up soon.

We have also started the process of getting her Early Intervention(EI). I have already filled out the paperwork and Tuesday we see the therapist for an evaluation. It is nice to have a program that will help Delilah with her development. We still see her occupational therapist, Sally, every Wednesday. She is wonderful. I hope the therapist with EI is just as good. Our case manager said she has worked with several other PWS children a few years ago. 

We are also working on getting in to see an Endocrinologist Pediatrician. According to all the information about PWS, the Growth Hormone Therapy is the best way to go. Seeing how I don't really understand all the medical lingo I have read, I really want to talk to a doctor who can spell it out in plain english for me. Many of the other parents I speak to on a PWS message board boast about how well it helped their babies.

Well, I have gone on long enough. It is off to play with Delilah, feed her, then bed. Good night!

PROUD!!!!

Wow! I can't believe Delilah will be 3 months old Thursday. Not only is the time flying, but we are beginning to see major accomplishments from our little bundle of joy. Lately, she has had much better head control. She has been able to turn it from side to side while laying on her back and when she is being held on our shoulder. However, the biggest accomplishment has just happened last night and this morning. While sitting on my lap with her legs in front of her, I leaned her forward and let her head lay on my chest. She decided she didn't like that and lifted her head to look at me. She lifted it with out my assistance, all on her own!!!! I am such a proud mommy! She hasn't done it during tummy time yet, but she is getting much closer. Before we know it she will be sitting up, rolling over, walking, etc. It is so great to see all the progress she has been making. She has also been smiling and giggling lately. She mostly laughs at Daddy, (it's because he is so funny looking) but I finally got to see it! So precious! I am in the process of charging the video camera so I can catch it on camera and let everyone see. She is so wonderful!

Other news: We had the Home Inspection for the home we have a contract on. It went very well. No major issues. Just a few little things that we can take care of easily! That being said, we are definitely buying this house. If everything goes as planned, we will be closing October 30th! Anyone want to come and help us move?!?!

Contract Down!

We are one step closer to becoming home owners. We have a contract down on a wonderful house. This home is perfect for our needs, and has the potential to be GREAT! I am already decorating in my head. Now it is on to all the fun stuff ; inspections, paperwork, paperwork, and more paperwork. But it will all be worth it in the end. We are planning on closing the end of October. Hopefully we can get all the walls painted and our stuff moved in before Thanksgiving. Anyone want to help?!?!