Monday, December 21, 2009
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.
Tuesday, December 15, 2009
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.
Sunday, December 13, 2009
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
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
Sunday, December 6, 2009
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!
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