Friday our pediatrician told us to get Hudson tested for Strider, a breathing condition separate from. This is unrelated to cranio. Strider can be something really small that can easily be treated. BUT it could also mean another surgery before the cranio surgery.
Oh Yeah... I had a breakdown! Full on dramatic, embarrassing breakdown. And ya know it never happens in a place that is acceptable for breakdowns. Wheeeere did I decide I had finally had enough and couldn't take another medical issue. At work! Yep at work!
Soooo... after my pathetic F the world, F medical problems F THIS! We found out on Monday he does not have strider. So I rejoiced and then my blushed cheeks thought, maaaayyyybeee I over reacted. Just a tad. LOL. Thank you to Schylur who pulled me together at work ... again! Thank you to Erin, Morgan, Audrey for letting me vent and ramble and F the world. Thank you to Shawna who told me her daughter just had it and talked me through what they did and what to possibly expect. Thank you to Bri and Kyle for letting us crash in on your dinner at Panzons when Matt and I decided we just needed to get out. Thank you to pooooorrrr Web who drove to Maloneys only to realize the next day we never went there! SO SORRY!
So after all of this Hudson is NOW sleeping through the night! I swear a light has turned on inside me and the crazy has checked out. Turns out 7 months of no sleep effects your emotions. Who Knew! LOL. Now in the light of day I feel so amazing. My spirits are lifted and while I still can't take another medical issue right now with Hudson I am as prepared as I will ever be for surgery. Well.... at least today.
In the meantime fuuulllll speeeeed ahead working on the benefit. 14 days away! So excited to see everyone come out and enjoy a night on the town with us before surgery. As the marketing and advertising woman in me I will tell you GO GET YOUR TICKETS! www.chicksdigscars.org
On second thought, maybe that's why I am not running communications. But for reals we need to know head count so we plenty of food. If you can just come for a drink or want to have a night on the town, your support means the world to us!
See ya soon!
Thursday, October 27, 2011
Tuesday, October 11, 2011
Successful Doctors Visit ... Everything Happens For a Reason
I could not have asked for a better doctors visit!!!
I was filled with anxiety when we showed up to Medical City. I had promised the ladies with WCF (the World Cranio Foundation) that we would stop by before our visit. They were so wonderful and a I shed a couple of nervous tears with them before heading to our appointment. The gave us a quilt took some photos of Hudson and were kind enough to let us change his stinky butt in their office! LOL.
As soon as I went into the waiting room I saw a couple faces I recognized. They were a couple from Kansas I had never met them but was told about their story through my friend Keri. SMALL world! What are the odds? They were so incredibly calm and reassuring to us and they were the ones going through surgery tomorrow. Incredible people! After their appointment they said everything happens for a reason and to stay in touch and we fully plan on it. I am so taken back by their strength and kindness.
There was another man who has a type of cancer that has only been seen 50 times in 10 years. Doctor Fearon has given him 5 more years than he was expected to live. Hearing his perspective on why things happen, how blessed he felt with such a full life and if it was his time to go that he knew where he was going. He rambled off the most beautiful prayer off the cuff for Hudson before his appointment. He said I don't know where that came from it just rolled out. He also said Everything Happens for a Reason.
That waiting room was so full of love and reassurance, it truly was spiritual. It took me back to think ... really WHAT ARE THE ODDS?
What are the odds that we found Dr. Fearon?
If anything different happened along the way we would have been with a doctor who wouldn't have given the best results. The way cranio surgery is performed is NOT created equal. The procedures and results can very dramatically from surgeon to surgeon.
If our pediatrician hadn't caught it when she did, if we didn't meet with the KC plastic surgeon who referred us to Dr. Fearon instead of going with a local surgeon ... Hudsons outcome would have been completely different! We owe the big guy upstairs a HUGE thank you for leading us through this. Everything Happens For a Reason and I am so thankful that I am now able to step back and see that while I don't have control over this situation, that someone bigger and better does.
Meeting Dr. Fearon was so amazing. I am incredibly confident he is the best and only surgeon that I want for Hudson. Everything he does is in the best interest of his patience. He told us about the procedure and WHY he does everything he does. The things he has learned from experience and research. I had a whole list of questions but he answered before I even asked plus more. He is truly a brilliant! He will track Hudson and said "I want to grow up with him".
I have never felt better about all of this than I do right now. Our date is Dec. 14th!!! I am so ready to have all of this behind us.
Friday, October 7, 2011
Glass Half Full
“Some people see the glass half full. Others see it half empty.
I see a glass that's twice as big as it needs to be.”
― George Carlin
Today the glass is half full. In the light of a new day I am making myself focus on the fact that we are going to be done with this so much faster. Just trying to imagine what it will feel like to have this off our shoulder. I might be getting our surgery date today so I am carrying my phone around with me all day like a desperate girl waiting for her crush to call. Checking my phone to make sure its really working. lol. I've decided waiting till 3:00 is acceptable to call them if they don't call me by then.
I also realized... man I mainly post on my bad days. I really am so happy most of the time. I feel so incredibly blessed to have a a husband who I love so much, a beautiful baby, wonderful family and friends... We really do have it all! I am so thankful for all of my blessings. Also to those wonderful friends and family I want to apologize b/c I have been AWFUL at returning phone calls (even more than normal) or texts, emails... I am so sorry. I love you all very much and do appreciate all your love and support!
Some happy news to share. Hudson has a tooth! My baby is growing into such a beautiful little boy. "He has personality growing out of his ears" as Morgan said last night. After a total melt down yesterday, it was so wonderful to spend time with Morgan and Belly Boo, as I call Isabel. It is so wonderful watching those two together. Seeing how similar and how different they are. I still can't believe they worn born a day apart! I love you girls!
Well we will be packing and getting ready to meet Dr. Fearon! At least we will be arriving in style with his "I'm tougher than I look" shirt. Thanks again Ash! We LOVE it. I wish I had one to wear that said "I'm not!"
Tonight I am going to have that glass half full with wine to celebrate hopefully having a date and end in sight ;)
Cheers!
I see a glass that's twice as big as it needs to be.”
― George Carlin
Today the glass is half full. In the light of a new day I am making myself focus on the fact that we are going to be done with this so much faster. Just trying to imagine what it will feel like to have this off our shoulder. I might be getting our surgery date today so I am carrying my phone around with me all day like a desperate girl waiting for her crush to call. Checking my phone to make sure its really working. lol. I've decided waiting till 3:00 is acceptable to call them if they don't call me by then.
I also realized... man I mainly post on my bad days. I really am so happy most of the time. I feel so incredibly blessed to have a a husband who I love so much, a beautiful baby, wonderful family and friends... We really do have it all! I am so thankful for all of my blessings. Also to those wonderful friends and family I want to apologize b/c I have been AWFUL at returning phone calls (even more than normal) or texts, emails... I am so sorry. I love you all very much and do appreciate all your love and support!
Some happy news to share. Hudson has a tooth! My baby is growing into such a beautiful little boy. "He has personality growing out of his ears" as Morgan said last night. After a total melt down yesterday, it was so wonderful to spend time with Morgan and Belly Boo, as I call Isabel. It is so wonderful watching those two together. Seeing how similar and how different they are. I still can't believe they worn born a day apart! I love you girls!
Well we will be packing and getting ready to meet Dr. Fearon! At least we will be arriving in style with his "I'm tougher than I look" shirt. Thanks again Ash! We LOVE it. I wish I had one to wear that said "I'm not!"
Tonight I am going to have that glass half full with wine to celebrate hopefully having a date and end in sight ;)
Cheers!
Thursday, October 6, 2011
Surgerys Moved UP!
"It's a strange thing, but when you are dreading something, and would give anything to slow down time, it has a disobliging habit of speeding up.
~J.K. Rowling, "The Hungarian Horntail," Harry Potter and the Goblet of Fire, 2000
We originally were looking at doing our surgery in Feb. b/c the doctor likes to do surgery when the baby is 11 months. BUT in Jan. insurance with my company is changing. It will be significantly cheaper for us to do the surgery with our current health care provider.
SO ...
I talked with Dr. Fearons nurse and told her our situation. I said my #1 concern of course is getting the best results and is way more important to us than financial issues. We will figure it out. I said it moving the date up will at all increase the chance of another surgery that we will keep our Feb. date.
She said the best operation results window is between 9-11 months. After 1 year success isn't as effective. She said the head is changing so quickly during the first year that it is good to wait as long as possible but before 1 year. (Another great reason to raise awareness!) She said doing the surgery at 9 months will be fine. I expressed my concern again about if this will increase the chance of another surgery that we will wait. She said there is no way to predict what his skull will do at 9 months, 11 months or through his life. She said that's why Dr. Fearon over corrects during surgery b/c with this condition his skull will want to reform. But that he tries to hit a home run during surgery so we only have to do this once but there is no guarantee. Dr. Fearons rates of needing another surgery is 2%, other doctors percentages are MUCH higher.
So I talked to the surgery coordinator and told our situation. She said there are 11 other children who also need Dec. But that she would mark it in her book. She said we can't have a date until the neurosurgeons schedule is released. Amazingly enough it might be released tomorrow!!! Finally some good news.
WOW! So many feelings are flying around right now. I am happy to have this over with sooner than later. BUT holy crap this is becoming REAL SO FAST!!! I felt like time was already going too fast and now we have hit fast forward. Every step along the way I literally feel like I am dragging my heels in the ground getting pulled to the finish line.
It is so great that this will be behind us sooner but its so hard to imagine that when all I can see is surgery. I realize moving it up only changes the fact that I have to deal with this sooner rather than later. But I like my happy, cozy denial. Its safe unlike the harsh reality. Lets just pretend this isn't real is much easier to deal with on a daily basis. And now BAM, my blanket of denial is quickly removed.
Sometimes music says it best. Drumming, by Florence & the Machines is exactly how this has felt. Its been my "soundtrack" through this. Every time I listen to it, it reminds me of that first doctors appointment and how it feels on those bad days.
I will happy to have a new soundtrack soon. I'm thinking Here Comes the Sun will fit perfectly!
~J.K. Rowling, "The Hungarian Horntail," Harry Potter and the Goblet of Fire, 2000
We originally were looking at doing our surgery in Feb. b/c the doctor likes to do surgery when the baby is 11 months. BUT in Jan. insurance with my company is changing. It will be significantly cheaper for us to do the surgery with our current health care provider.
SO ...
I talked with Dr. Fearons nurse and told her our situation. I said my #1 concern of course is getting the best results and is way more important to us than financial issues. We will figure it out. I said it moving the date up will at all increase the chance of another surgery that we will keep our Feb. date.
She said the best operation results window is between 9-11 months. After 1 year success isn't as effective. She said the head is changing so quickly during the first year that it is good to wait as long as possible but before 1 year. (Another great reason to raise awareness!) She said doing the surgery at 9 months will be fine. I expressed my concern again about if this will increase the chance of another surgery that we will wait. She said there is no way to predict what his skull will do at 9 months, 11 months or through his life. She said that's why Dr. Fearon over corrects during surgery b/c with this condition his skull will want to reform. But that he tries to hit a home run during surgery so we only have to do this once but there is no guarantee. Dr. Fearons rates of needing another surgery is 2%, other doctors percentages are MUCH higher.
So I talked to the surgery coordinator and told our situation. She said there are 11 other children who also need Dec. But that she would mark it in her book. She said we can't have a date until the neurosurgeons schedule is released. Amazingly enough it might be released tomorrow!!! Finally some good news.
WOW! So many feelings are flying around right now. I am happy to have this over with sooner than later. BUT holy crap this is becoming REAL SO FAST!!! I felt like time was already going too fast and now we have hit fast forward. Every step along the way I literally feel like I am dragging my heels in the ground getting pulled to the finish line.
It is so great that this will be behind us sooner but its so hard to imagine that when all I can see is surgery. I realize moving it up only changes the fact that I have to deal with this sooner rather than later. But I like my happy, cozy denial. Its safe unlike the harsh reality. Lets just pretend this isn't real is much easier to deal with on a daily basis. And now BAM, my blanket of denial is quickly removed.
Sometimes music says it best. Drumming, by Florence & the Machines is exactly how this has felt. Its been my "soundtrack" through this. Every time I listen to it, it reminds me of that first doctors appointment and how it feels on those bad days.
I will happy to have a new soundtrack soon. I'm thinking Here Comes the Sun will fit perfectly!
Monday, October 3, 2011
Pay It Forward
I'm so excited to be able to do my part to raise awareness of Craniosynostosis. Ever since I found out about Hudsons diagnosis I kept dwelling in the WHY? Why me? Why my baby? And honestly sometimes I still get stuck in that place in my mind.
I have seen many amazing women through craniokids.org use their talents to help out with cranio awareness and to ease the fear and anxiety of the newly diagnosed. Like the cranioangel network... a mom who needed to fill her time with something other than worry. So she sends out headbands and cranio caps to help brighten a cranio families day. I still remember how excited I was to get ours in the mail. Or the craniocarebears, sending care packages to families going through surgery. Or the mom who wrote the beautiful poem that I have as a post on this blog. Or even just the women on craniokids.org who are an ear to listen to you. Your fears, sadness, and sending prayers through surgery. These women stay logged on long past their kids surgeries just to pay it forward. I find them so amazing! True heros.
Finally I have found a way that I can give back. I have been trying to use my creativity to hopefully make an impact on cranio awarness. Its just a logo and a brand but it gives cranio a whole new look and feel. It was a challenge to make sure it wasn't too harsh but not to cutesy either. I feel I found a good balance of honesty and sweetness. I hope to someday make shirts and onesies that other cranio parents can wear with pride.
This brand I have developed is for our benefit to raise awareness, help with our medical expenses and to help other families through the Craniofacial World Foundation. Some of which don't have any insurance. We are still in the midst of the crazy insurance world but at least we have someone to battle with.
All of this has kept my mind off the fact that we go to Dallas on Sunday. GOD on Sunday. Thinking about it puts a burn in my eye as I hold back the tears. No matter what I do, the day is coming sooner than I will be ready for, that we will be putting our baby in the hands of another. In the doctors hands holds my whole life, my baby. I am getting ready to shake those hands in a matter of days. Hopefully I can stay steady and get some answers. I want to see how he interacts with Hudson and I pray Hudson charms his socks off! My cousin Ashely got Hudson a shirt that says, I'm Stronger Than I Look, which I adore! Hudson is going to wear that to meet the dr. and help us make an impression. Thanks Ash!!!
As you can tell this benefit is more than just helping us financially, awareness, or helping the WCF... Its a way to give back and pay forward all the kindness that has been shown to me. Its giving me peace of mind. Its letting me pretend my biggest fear is no one attending the benefit. Its just heaven sent.
Check out chicksdigscars.org for the benefit. We appreciate any help in promoting this event.
Wish us luck in meeting the doctor!
Thanks,
Jen
I have seen many amazing women through craniokids.org use their talents to help out with cranio awareness and to ease the fear and anxiety of the newly diagnosed. Like the cranioangel network... a mom who needed to fill her time with something other than worry. So she sends out headbands and cranio caps to help brighten a cranio families day. I still remember how excited I was to get ours in the mail. Or the craniocarebears, sending care packages to families going through surgery. Or the mom who wrote the beautiful poem that I have as a post on this blog. Or even just the women on craniokids.org who are an ear to listen to you. Your fears, sadness, and sending prayers through surgery. These women stay logged on long past their kids surgeries just to pay it forward. I find them so amazing! True heros.
Finally I have found a way that I can give back. I have been trying to use my creativity to hopefully make an impact on cranio awarness. Its just a logo and a brand but it gives cranio a whole new look and feel. It was a challenge to make sure it wasn't too harsh but not to cutesy either. I feel I found a good balance of honesty and sweetness. I hope to someday make shirts and onesies that other cranio parents can wear with pride.
This brand I have developed is for our benefit to raise awareness, help with our medical expenses and to help other families through the Craniofacial World Foundation. Some of which don't have any insurance. We are still in the midst of the crazy insurance world but at least we have someone to battle with.
All of this has kept my mind off the fact that we go to Dallas on Sunday. GOD on Sunday. Thinking about it puts a burn in my eye as I hold back the tears. No matter what I do, the day is coming sooner than I will be ready for, that we will be putting our baby in the hands of another. In the doctors hands holds my whole life, my baby. I am getting ready to shake those hands in a matter of days. Hopefully I can stay steady and get some answers. I want to see how he interacts with Hudson and I pray Hudson charms his socks off! My cousin Ashely got Hudson a shirt that says, I'm Stronger Than I Look, which I adore! Hudson is going to wear that to meet the dr. and help us make an impression. Thanks Ash!!!
As you can tell this benefit is more than just helping us financially, awareness, or helping the WCF... Its a way to give back and pay forward all the kindness that has been shown to me. Its giving me peace of mind. Its letting me pretend my biggest fear is no one attending the benefit. Its just heaven sent.
Check out chicksdigscars.org for the benefit. We appreciate any help in promoting this event.
Wish us luck in meeting the doctor!
Thanks,
Jen
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