Tuesday, September 29, 2009

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"

Sunday, September 27, 2009

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!

Tuesday, September 22, 2009


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?!?!

Monday, September 14, 2009

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?!?! 

Sunday, September 13, 2009

Little Scooter

Last night, when we put Delilah to bed, she was in the below position:
To our surprise, when we woke up, we found that she had scooted to the following position:
She is such an amazing little girl! I am blown away by her progress! Her neck control is getting better everyday. And, according to John and Brad, she laughed at Daddy yesterday while Jenn and I were out getting her some new toys to stimulate her hands. We are finally beginning to see her beautiful personality! I love this little girl!!!

Friday, September 11, 2009

House Hunting

So, we have some great news. We have started the wonderfully, exhausting process of searching for our first home. I have been scouring the net for homes in the areas of interest and most importantly in our price range. Who knew just sitting in front of my computer looking at homes would be so exhausting?!? I think I have looked at every home in our price range three or four times each. It is time to get off the couch and actually visit these houses, which I finally did today.

I went and looked at a home in Pinson. A home that has been on the top of my list. I loved the open floor plan and super sized yard. However, I was not a fan of the stacked washer and dryer in the kitchen's only pantry. I NEED a pantry. Correction, Delilah needs the pantry. With PWS, she will eventually begin to search for food, and we need to be able to lock it up to protect her. We cannot accomplish this without a pantry. Besides, who puts a washer and dryer in their kitchen when they have a perfectly good basement and garage? Well, that was answered almost immediately. The stairs leading to the basement were "break your neck" steep. Such a shame. The basement had been beautifully finished with a spare bedroom, game room, and den. There was no way I would ever let Delilah climb those stairs; I'm too afraid to do it myself.

Oh well. That was only the first house. Tomorrow is a new day and I will be spending it with our Realtor, Amber. Wish me luck!

Thursday, September 10, 2009

Better late then never!

I have been getting a lot of layouts done lately. I joined ScrapGirls.com, and almost everyday they have a challenge. This really helps me get things done, because it gets my creative juices flowing. It usually only takes about 20 minutes to do a layout. 
For all those interested, Delilah and I will be in Niceville next Wednesday thru Sunday visiting my beautiful nephew, Wyatt. I can't wait to get some pictures of the three kids together. Family is GREAT!!!

Wednesday, September 9, 2009

Sibling Layout

I know this doesn't have to do with little Miss Delilah, but I was pretty pleased with this layout and wanted to share it with everyone. I have very few pictures of the three of us together. 

Monday, September 7, 2009

New Scrapbook Layout

Blogging Backgrounds

For all of you who have been following the last couple of days, you have probably noticed the background keeps changing. That would be because I have found sites that allow me to change the background with super cute designs. And they are FREE!!! So much fun for me, as I have little time for scrapbooking with school and Miss Delilah. It lets me be creative without the work. If you haven't already guessed, I will be changing the background often! Any day it could be different, so keep a look out.

Delilah Update: Not much to update except that she is the cutest little girl in the whole wide world. Every time she stretches, I want to pinch her little cheeks and kiss her all over. Also, she has been doing the funniest thing lately with her mouth. She has discovered her tongue and she loves to stick it out. It is so cute. One day I will get it on camera.

Friday, September 4, 2009

Prader-Willi Syndrome

We finally heard back from the tests results. Delilah has been diagnosed with Prader-Willi syndrome (PWS). We have had a few days to process this news and now have a better understanding of what this means. For infants, PWS causes poor muscle tone and strength. Most babies with PWS have problems feeding and usually spend a long period of time on feeding tubes. We are happy to say this is not the case with Delilah. She did have the feeding tubes for a short period of time, but she has excelled at bottle feeding. The girl can eat. Most babies also have a hard time gaining weight and growing. So far Delilah has done very well in both accounts. I have arranged with her Pediatrician to have her weighed and measured every month instead of waiting for the normal baby visits.

The effects of PWS are most drastic later on in life. One of the main concerns is the insatiable appetite it can/will cause, leading to childhood obesity if not controlled. In most cases, food has to be closely monitored, even locked up. There is also the possibility if learning disabilities. We are lucky enough to have the benefits of Nutritionists and fantastic learning tools to help curb these problems. (For more detailed information please use the link I have provided on the right hand side of the blog. I have also included a link for donations to the PWS Association for the fight for the cure.)

During this time, we will begin working with her therapists and doctors to build up her muscle tone and strength and discuss things to do to help her development. The next coming weeks and months will hopefully shed some more light. PWS will not deter us from loving and raising an amazing little girl. In some respects we are lucky. We could have been dealing with something much worse then PWS. Delilah will be able to lead a relatively normal life, with just a few restrictions. It will be a life full of insurmountable love.