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,
Jonathan, Kera & Delilah