Saturday, November 29, 2008
Sunday, November 23, 2008
Watchin the Bronco game with the fam!...yes there was lots of yelling!
L et's just say at least he didn't rip it from his body...
Beautiful flowers from the California Page Family! Thanks!
A visit from Grandma Connie! Hailey was soo excited to see her!
Friday, November 21, 2008
Ashtyn had an apt with the same doc today just to double check and make sure she didn't have a heart murmur. I told Nate the apt wasn't that big of an apt and he didn't need to worry about being there! Luckily my mom was still staying with us and came with me!
The doctor walked in and immediately said "I got the lab results today after all..." My mom and I sat silent waiting to hear the actual words..."She did test postitive for Williams Syndrome." We both started crying. I knew it, I guess it just makes it real to actually hear it from the doctor. She gave me a packet on info on the syndrome and told me to read it when I was ready. She truly is so sweet and is going to help us with this in whatever way possible! A support group, government help...We scheduled another apt the monday after Thanksgiving to go over everything and to start setting up tests to check out Hailey's kidney's, thyroid and whatever else medically goes along with this.
Man have we had a tough year! I do admit we are definitely a little drained...but are encouraged by the love and support from those around us and know that God is in control and we are not being punished, but this is what He chose for us! He knew that we would be the right parents for Hailey and it is a priviledge to be them! We love her so much and don't know what we'd do without her! Just have to keep our thoughts focussed on today and not think of the possible struggles of the future! Thank you again for all of your prayers and support...we are so thankful for where the Lord has put us and for all the people He has placed in our lives!
Immediately I have to admit I was a little scared, because she did look a lot like Hailey and I was preparing myself for 2 children with WS...but within a few minutes I noticed her eyes were no where near as puffy and then when they weighed her she was over 7 lbs...that comforted me greatly!
The hospital pediatrician reassured me later that she didn't even have a heart murmur at all!!
Our new family!
Wednesday, November 19, 2008
Wednesday, November 5, 2008
So I already took Hailey to the hospital for blood work yesterday! There was a little boy her age that went right before her and had the DEATH scream...I mean seriously I thought they were beating him in there! It freaked me out, but you gotta do what you gotta do! Hailey did amazing and I held her while her arm was on the table being held by a nurse and as they put the needle in...Hailey's eye's filled with tears and she looked straight at them and said "you hurt me!" She just whined until the needle was out and then she was back to her smiley self! So now we are just waiting for the call from her doc!
I also went to the doctor yesterday...I'm 2 1/2 cm dilated and 70% effaced! AHHHH....just praying for God's perfect timing cause I just don't feel ready! My doc said "well you'd better get ready!" He also said he would almost bet on the fact that the baby is already at least 7 lbs...which is definitely reassuring considering a characteristic of the syndrome is low birth weight! I'm not worried at all and I know God has a perfect plan...even if I did have 2 kids with WS!
Just wanted to thank all of you for your amazing emails and comments! I am definitely at a more stable place right now and realizing how God truly has been preparing me for this for 3 years...and every time I look at Hailey am SO thankful for the way that she is! She literally says "I Lub you mommy" like 20 times a day! I wouldn't trade her for the world and know that God does have something so special planned for her! I'll keep you all updated when we get the call from Hailey's doctor...or when the new baby comes!
Sunday, November 2, 2008
So I never thought that I was the type of person to start a blog....but since there is so much going on in our lives, I figure it's the best way to keep people updated!
We recently took Hailey to her standard bi-yearly cardiology appointment to check on her heart murmur. The Fresno Children's Hospital had not sent Hailey's records over yet, so her new doctor re-did her testing—EKG, Ultra Sound, blood pressure, etc.. The specific type of heart murmur is a Supravalvar Aortic Stenosis (new to me). This type of heart murmur can be the result of a genetic heart problem which can be linked to a condition called Williams Syndrome which affects both mental and physical development. She said that Hailey has some of the facial characteristics that could match this syndrome and after asking me some questions, recommended genetic testing (which may have a 6 month wait). She also said that the severity of the symptoms can vary greatly.
I was by myself, had already been there 90 minutes, and this was the first I had ever heard of this syndrome! I left extremely disturbed and went straight home and googled WS. Within minutes I knew that the WS characteristics fits Hailey perfectly. The common symptoms include: an excessively outgoing personality, development and speech delays, low birth weight/gain, low muscle tone, puffy eyes, a long upper lip length, dental abnormalities (small widely spaced teeth), irregular sleep patterns, colicky in infancy, hypersensitive hearing, and the heart murmur. These fit Hailey to a T. People with WS can also have kidney problems or failure, major joint issues, diabetes, and a need for surgery due to the heart murmur.
From just a few weeks old I knew that Hailey was special, different from other kids her age. She always met her milestones, but later than the average. Nate and I were very aware and always asked her doctors if there was something more to her delays. They repeatedly assured me that she was normal. We switched doctors frequently seeking higher quality care and they all said the same thing, nothing was wrong she was just behind. I persistently asked about her puffy eyes and was told it was allergies. We asked her California Cardiologist if her heart murmur had anything to do with her developmental delays and even got her tested for autism. But again and again we were assured that she just behind.
Honestly, it has been a tough few days since we found all of this out. Initially, I cried more than I have in a long time. Nate was more numb at first, and it took a day or two until he broke down at the reality of the situation. I feel like I am still in shock, and probably will be until we actually get the official diagnosis and speak to the doctor. We haven't told many people yet, and honestly, it is really difficult and draining to even speak the words out loud. A pre-warning: we are still very emotional about it and this will take some time to emotionally process.
I called Hailey’s new pediatrician the following morning and in tears asked what I should do now expressing that we could not wait 6 months for an official diagnosis. She was angel and called the geneticist herself, is pushing to get Hailey in before the end of November, and is starting some testing to get the process going.
Because of Hailey's developmental delays, she recently was accepted into a program called Child Find where she gets to attend preschool with an entire team of therapists 4 mornings a week at no cost to us. She has been going for 2 weeks and it has been such a blessing! My own research shows that with WS, early intervention with physical and speech therapy can help...so we've already got the process started!
Prayers and support are especially needed at this time in our lives, as we know there is a long road ahead of us. Because we are still adjusting to the news and hoping that Hailey's case is very mild, we ask that you try not to pass along to us any information or pictures that you may find online or anywhere else regarding WS which may be discouraging and trigger additional emotional challenges. However, don't be afraid to talk to us about it...we are not in denial and it does help to know that people care and want to hear about it. We will keep you posted on this blog as to any new information that we find out.