Playing with the Flip

In order for John to stay up to date with Delilah we decided to get the Flip UltraHD Camcorder with some Christmas $$. Thank you Grandpa R! I wanted to test it out to see how easy it is. Please let me know if the video plays. If it does, this is a super easy camera to use.

Curve Balls

Just when you think everything is going to start settling down you get thrown a wicked curve ball. John is getting deployed to Iraq. AGAIN. And here's the kicker...for 6 months. Thats right, half a freakin' year. I really thought that when he left active duty for the guard, this kind of thing would stop. If not completely, then it would just be short trips. I guess that is what I get for being so naive. I should be used to it by now. He's gone so many times already, 5 I think. This should be easy. Not even close. This time there is a new circumstance, which is Delilah.

Before, when he would deploy, it was just me and the dogs. I kept busy with work and was entertained by my numerous friends who also had husbands deployed. Time would pass rather quickly. Now I am a stay at home mom. Don't misunderstand, I love taking care of Delilah and spending all day with her. However, I also enjoy adult conversation and getting out of the house once in a while. John provides this adult conversation and daily interaction with 'tall' people and Bradley, Jennifer and Robert are great for getting out of the house. While I will still have the three for spending time with, I still won't have the daily adult interaction I crave. I am hoping being closer to family will help the time go by quicker. You all may start getting hand-made cards again. Anything to keep me busy. 

On top of everything, our insurance will change for 6 months. We will have to check with all the specialists to see if they take TriCare. My main concern is Dr. Miller. She is out of state and I'm worried that TriCare will tell me I must use an endocrinologist that is local. That will not do. I am also worried about her Growth Hormone. We receive that from a Mail-Pharmacy and I don't want anything to jeopardize us getting her GH. 

We have only a few weeks to get all this worked out. Throw Christmas into the mix and the time gets shorter. With all that said, posts may be few for a while. But once John gets on his flight there will be a post a day. This blog will be a great way for him to see Delilah while he is away. 

Please pray for our family while we deal with these new developments. Especially pray for John's safety while in Iraq. 

Our Christmas Letter 09-The Year in Recap

Dear Family and Friends,

What a year it has been in our family. We started off with just the two of us and now we are three. It is crazy what can happen in a year. But, let's start at the beginning shall we.

This time last year, John and I were making our move from Alaska to Alabama. We drove the entire way. Quite a feat when you consider I was in my first trimester of the pregnancy. Not a very fun ride for me. However, we finally made it to Alabama in one piece on December 30th, just in time to ring in the new year.

Over the year many things have happened. The most important is the birth of our beautiful daughter, Delilah Grace, on June 24th. She has been such a blessing in our life. As most of you are already aware, there were a few complications once she arrived. She was hypotonic (low muscle tone and wouldn't eat) when she was born. After spending upwards of 12 hours a day in the hospital with her, working with her to eat and just loving her, we were able to bring her home July 23rd. At the time of leaving we still did not know her diagnosis, but she was eating on her own, so that was all that mattered at the time.

After about a month of being home we finally received the call from the Geneticist about her diagnosis. She has Prader-Willi Syndrome (PWS). For those of you who aren't already familiar with PWS, it is a genetic disorder that occurs in one out of ever 15,000 births and is one of the leading genetic reasons for childhood obesity. In the infant stage, it causes hypotonia. Most babies are unable to eat on their own so they are tube fed. (Luckily, Delilah only had to be tube fed in the NICU for a little while, before she began to take a bottle on her own.) As the child grows older (starting between 2 and 6), they will be unable to control their appetite and will eat everything they can. They will always be hungry. At this point, food intake will have to be closely monitored and all food sources will have to be locked away, as PWS children are known for 'sneaking' food. Unfortunately, there isn't a cure for PWS at this time. However, there have been great strides in our knowledge of nutrition, so we will be able to insure she gets a well balanced meal and keep the excess pounds off. There is also the Human Growth Hormone shot that she receives every night. This will help her with her muscle tone and when she is older she will have a better chance of keeping lean.

When we first received the diagnosis I think we were in a state of shock. It is hard to come to terms with the fact that our beautiful baby girl isn't 'normal'. However, we don't allow ourselves to dwell on the negative. In our eyes, Delilah is perfect. She just needs a little extra help in some areas, but who doesn't. She amazes us everyday. Where some parents take for granted a baby cooing, we boil over with excitement each and every time. When she swats at a toy or brings it to her face we can't help but smile and clap. Things that are relatively easy for other babies are more difficult for her. She is our little super star and we can't wait to see what will happen in the new year.

On top of everything that has been going on this year, we have also bought our first home. It is wonderful to own a home, but a little scary. I miss being able to call maintenance when something breaks. Now we have to either fix it ourselves, call a professional, or sweet talk the Dads (Thank You Dads). It is worth it, though, for all the space and privacy we now have. We no longer have to listen to the insanely loud neighbors above us and our dogs can run free in the back yard. My favorite part about owning a house is knowing that I am finally making a "home" for my family. Hopefully we can stay here for a very long time.

Well, as you have read, it has been a very eventful year for us. We have definitely had our ups and downs, but have come out on top. We couldn't have done it without the love, support, and prayers of all our family and friends. So to all of you, THANK YOU SO MUCH! Without all of you, our year would have been much much harder. We love you all so much! We hope you all have a Merry Christmas and a Happy New Year!

With all our hearts,
The Unfrieds
Jonathan, Kera & Delilah

First Snow

Saturday morning we woke up to a white winter wonderland. It snowed in Birmingham. Something I wasn't truly expecting. I know that it does happen from time to time, but I guess it just didn't register. Normally the sight of snow would bring back the oh so wonderful memories of winter in Alaska (<--insert sarcasm here), but this time I was very excited. It was Delilah's first snow and we had to get photos. So here you are:

We also went to the CMC (John's work) Christmas party today. It was a really fun time; especially the part where she took pictures with Santa Clause and Mrs. Clause. She did a great job. Did I mention she was the bell of the ball? So cute in her red Christmas dress.

Some updates on how she is doing: She has had great head control lately. Today, at the party, she sat in my lap for a good 5 minutes with her head up and looking forward. Much longer then she has done in the past. Also, when I was getting her dressed today, I flipped her on her belly to button her dress and she lifted her head about an inch off the mat. I was so excited. She did it again when I was changing her into her PJs. Such a strong girl. She is also laughing and talking (coo) more. She will suck in her bottom lip and just coo at her toys. She does most of her laughing at Daddy. She loves it when he makes funny faces at her. Below is a picture of her laughing while John is playing with her. One of the few times I have been able to get her smile on camera. So gorgeous.

Well, that's it for this post. It will be pretty slow the next couple of weeks while we gear up for Christmas. I will try to post anything new as it happens. Just in case, Merry Christmas and Happy Holidays!

Pictures

Here are some pictures from the past week. Delilah has been introduced to cereal and seems to like it. She makes some funny faces, but she eats it. Her cousins were here last night and this morning and we finally got some pictures of the three of them together. Logan wanted pictures with Delilah.  Enjoy!

Delilah's Thanksgiving Dress

Her first time eating cereal! She did great!

The three cousins. Wyatt, Logan, and Delilah.

Logan hamming it up in front of our christmas tree.

5 Months

WOW! 5 months!!! I can hardly believe it. Well, we had an appointment today with the new pediatrician to check her weight and to discuss some of her issues. She now weighs 10 pounds 8 ounces and is 24.5 inches long. Pretty good. She still has a long way to go but she is doing really well. She is getting more active with her toys. She is grabbing at them and bringing them to her mouth. She is also fascinated with her hands. She loves to look at them and suck on them. One day I will catch it on video and post it. (I have pictures I took today that I will post soon. I can't find the card reader.)

Christmas is fast approaching. I am definitely looking forward to it this year with all the babies in the family, especially Delilah's first Christmas. We still have to go out and get decorations (we got rid of most in Alaska), but the gift shopping should be really fun this year. If anyone is wondering about a gift for little Delilah, she is currently a size 0-3 months and it doesn't look like she is going to out grow that anytime soon. Also, the therapist says she may be ready for 'Cause and Effect' toys. Mostly things with lights and sounds that she activates by pressing buttons. And there is always books. She is gonna be a reader like her momma so we need to build her library.

I hope everyone has a Happy Thanksgiving. I am sure there will be plenty of pictures to post after the festivities. There is a lot to be Thankful for this year!

In Our New Home

Well, we have moved into our new home. Thanks to all of you who helped. It is nice to finally have a place of our own. Unfortunately not all of the unpacking is done. If I'm going to be honest, most of the unpacking isn't done. It will definitely be finished by November 22. I don't want Delilah's therapist from Hand In Hand thinking she lives in a dump.

Speaking of Delilah, a few new things to report. First, we have officially started the Growth Hormone Shots every night. She doesn't even seem to notice. I, on the other hand, had a little difficulty with the first few shots, but now I have it down. She doesn't even make a peep when I do it. Such a brave little girl. Second, we finally received the sleep study results. Apparently Delilah has Central Sleep Apnea. According to the doctor when she sleeps she pauses her breathing. Nothing major alarming but it drops her oxygen levels so he has put her on oxygen at night, when she is sleeping. I have asked other PWS mothers about this and it seems pretty common with PWS babies. Doctors can't pin point exactly why they have sleep apnea, but it seems the hypotonia has something to do with it. Delilah is still adjusting to the oxygen, but she is a trooper and soon won't even notice it. We will have to do a sleep study again in a few months. Not looking forward to that, but the doctor said she could grow out of it with age and strength gain. Here's hoping.

And for all of your viewing pleasure, here is a picture of Delilah with her Uncle Lee.

Halloween Pics

We are homeowners now which has led to painting the last three days. Too tired and not much time to Blog so here are some pictures of Delilah's first Halloween to hold you over.

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.

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!)

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.

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. 

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.)

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. 

Delilah and Daddy

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?!?! 

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!!!

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!

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!!!

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. 

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.

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.

Whew!

I know it has been a while since my last post. It has been really busy around here. We had visitors this past weekend. My old neighbors in Alaska, who now live in Georgia, came to visit us for my birthday. We had a great weekend. I finally made it to the Zoo. Delilah slept the entire day. She really loves her stroller.

It is amazing how fast the kids have grown up. Alex was only 4 months old when they left Alaska and now he is 2. Michelle has grown like a weed. She is almost as tall as I am. I can't believe she is 9 and in the forth grade. The kids really enjoyed meeting Delilah. Alex wanted to hold her constantly. It was so nice having them here. It felt like old times.

I have also been preparing for my Final Exams, which I took today. I am so glad they are finally finished. Unfortunately, I don't have much time between semesters. The new semester starts Monday, but I have already started working on my assignments. This semester is going to be harder then the last. I am beginning to regret choosing Biology and Economics. Both will be very demanding on my time. Even as daunting as it seems, I will push on. I want to be able to provide the best for Delilah and that means a college degree.

Well it is off to the books. Daddy is home, so I have some time to study. I will try to post as often as I can.

Play Time

Digital Scrapper

For an early birthday present, my husband let me order the Bamboo Craft. This is a Pen Tablet for my computer that I use for digital scrapbooking. I am an avid traditional scrapbooker, but our apartment does not have the space for me to work. (I had my own craft room in our last place, but now it is a nursery.) In order to keep up with my layouts, I decided to give digital a try. With the Tablet, I also received Photoshop Elements (PSE) and other programs to work with. After spending the last few days watching tutorials (during Delilah's naps) on how to work PSE, I finally completed my first page. It was so much fun and much easier then I thought it would be. As for my first layout, I am pretty impressed with myself. What do you all think?

Sleeping Beauty

She is so cute when she sleeps. She loves to throw her arm across her body and lay on her side. So stinkin' cute!!

Full Time Mommy=Exhaustion

Wow! I know everyone tries to tell you how exhausting parenthood can be, but you don't really know until you are fully emerged in it. The first week home with her has been wonderful and exhausting. I was fully aware of the late night/early morning feedings. I just wasn't all that prepared for the toll it took on me physically.

We did great with the nursing the first few days. She did best with it in the hospital. But after a few days, my milk supply started to decrease to what she eats, which is only 2-3 oz a feeding. Before, I could pump upwards of 5-6 oz, and the milk would free flow when she ate. She isn't as interested in nursing now that she has to work for it. In fact, she refuses to nurse. She has pulled a 180 and now prefers the bottle. So, instead of exclusively nursing her, she gets her breastmilk from a bottle. This means now I pump after her feedings. (I luckily have quite a supply of frozen milk from her time in the NICU. So if my milk disappears, she will have breastmilk for a month or two.) Time doesn't exist for me anymore. But do you know what? I wouldn't have it any other way.

Bath Time

Last night was Delilah's First Bath at home. She has had sponge baths in the NICU, but this is her first bath in her own tub. I think she really liked it. She groaned a little once, but she seemed quite content in her little tub. She wasn't all that happy to get out of the tub. I think she was a little chilled, but once she was wrapped up in her robe (lots of growing room for sure) she was happy again. I may be a little bias, but she is the cutest baby girl ever!