Sunday, November 2, 2008

Answers for Hailey


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.

10 comments:

AmyGibson said...

Please know that we love and cherish Hailey more than you could possibly know. She has always been the sweetest, most lovable, funny, and awesome kid I know, and I even worried that I would not be able to love my own child as much as I love Hailey! I see her making strides w/ developement even in the past month alone, and am amazed by her growth and progress daily. She is such a blessing- and I wouldn't want her any other way than exactly the way that she is- the way that God made her! I'm so proud of your strength and positive attitude during this test of faith- and I know that the Lord has Hailey, and you and Nate, right in the palm of His hand. xoxo

Karen said...

love you guys...and adore Hailey! We are praying for you guys right now...mostly that the nearness of God would be overwhelming and would give you a 'peace that passes understanding.'

Lindsey Faris said...

Thinking of you guys while you go through this trial period of figuring out Hailey's diagnosis. I know it is extremley frustrating when you have waited so long and asked so many questions, and no one knew what was wrong with your baby. I am thankful that the doctors may finally figure something out so that you can guys can focus on what Hailey needs, so that she can succeed like we all know she will! I love Hailey so much!!! She is the sweetest, most loving little girl and has been such a blessing in the lives of so many people. Take care of yourselves, take one day at a time, and focus on the positives. Love you guys!

kimy2u said...

I am praying for you all right now. May the Lord be your wisdom and strength. "Be not wise in your own eyes; fear the LORD, and turn away from evil. It will be healing to your flesh and refreshment to your bones." Proverbs 3:7-8

el rio said...

I love you guys so much...and you have raised an amazing little girl!! The last time I saw her you could just tell she was a page/burg kid ;) Anyway I just wanted to let you know that our (lee and I and the Lanzy fam) prayers are with you as you endure this trial. If anyone could endure a trial and come out of it with an amazing attitude and strength in character, it is the two of you! God knows the plans for us and He would not give us something beyond what we are able Jer 29:11. I love you....my prayers are with you...give Hailey a kiss for me!!

Robin said...

Nate and Jen,
Thank you for sharing this news with us so that we can support you and uphold you in prayer! We are so glad the Lord brought you to us at Hillside... we love you guys and will be praying for peace and wisdom in the coming days.

PaPa said...

Hailey is destined to live a life promoting encouragement and edification to others. She travels with a joy that can only be hoped for by most adults. She spreads it in every relationship. God will lift her up to an annointed place to be heard and seen by many. She is an ambassador already...just turning 3. Many miracles are on the way for her. Stay tuned...don't miss them!!

Kari said...

Hailey is so precious and I am so thankful to have her in our lives and in Mason's. God created her in his perfect design and that's just what she is..perfect! Every tear you cry is known by God and his grace IS sufficient in this time of trial beyond what you can imagine. Your burdens weigh heavy on us and we'll be praying for you!

Amy Jackson said...

Nate,Jen,Hailey,and new baby(soon to come but not too soon!) we love you and thank you for sharing this part of your lives with us. We have watched as previous trials of timing have come and gone and God has used them for His good in your lives. What a tremendous blessing to be used by him here on earth. You now face trials of moving, starting a new life in a new house, Hailey at a new school, Jen about to give birth, Nate adjusting to a new job, and most recently trying to understand what Hailey's diagnosis means. Please be encouraged that our God gives strength to the weak. If there was ever a family who I have seen move quickly and adjust very well, its the pages. The best go- getters i know! We love Hailey just as much, she is still our sweet Hailey girl and that can never change. We will keep you guys in our prayers as you continue to receive information about W.S. ,that your final weeks of pregnancy would go well. And most importantly that God would be ever so near to you and walk each day hour by hour and minute by minute with you as you seek Him and His perfect plan for your lives. We love you guys! Ryan and Amy Jackson

Tara said...

REading this post brought back so many memories. Like you, we switched doctors often trying to figure out what was going on with our little Payton. It looks like you have a wealth of family and friends to support you thru everything - and your Faith in God most definitely will get you thru. I'll be checking back often!