Winter in Pittsburgh is usually cold and somewhat snowy, but this year it's been excessive as the snow has hit so many parts of the East Coast and Midwest. Jaxson has loved seeing the snow and saying 'snow' and cold although we haven't taken him out in it much. I am probably being overly cautious, but we've been so lucky at how healthy and cold-free he's been, I really don't want to push our luck.
His vocab is increasing at such an alarming rate...he heard me say step stool yesterday and he's been walking around saying it ever since. He can say some pretty complex words including chocolate...much to our chagrin! And on Friday he had his 21 month check up and I mentioned in the car along the way that we were heading to see Dr. Leslie and wouldn't you know he started saying Doctor Leslie. Typing these words does not do them justice, the way he says them is just awesome, precious really!
So, I'm happy to report that he is at the 15% percentile for weight. He's never gotten over 10th, so we are happy about that! He's in the 50th for height.
We started going to a new kids gym last week and it's been great for him. He loves to climb, jump, socialize with the other kids, etc. He climbed on the rock wall today and you would think he's been doing it all his life. The folks at the gym were quite shocked at his development level for his age. We have him in the 2 year old class and he can pretty much hold his own with them.
We've had a few fun visits this month - cousin Lynda stopped by the first week of February to see Jax (although Barry and I were in Cabo at the time so we missed her), Perry jetted in from Seattle for a quick visit over Valentine's weekend, and my dad (or Pop Pop as Jax refers to him) stopped by for a few hours in between business meetings.
I'm sure there is much more to report on, but overall he's doing great and we are so blessed and thankful. Also, if you're interested Jaxson's Jog 2010 will be held on May 22 at North Park in Allison Park, PA. All the latest info is online at www.jaxsonsjog.com or you can join our Facebook page at www.facebook.com/jaxsonsjog.
Please keep all of the CDH babies on the way and in the NICU in your thoughts/prayers.
Tuesday, February 23, 2010
Monday, January 4, 2010
It's 2010 and still so many people don't know what CDH is
It's been quite a while since my last post. I think about posting often, but rarely feel I have anything interesting enough to share with the CDH world. I try to stay current with all of the many CDH families I follow. Hundreds of families in fact. By following their stories, I'm still a part of the CDH community somehow. Reading about the struggle, the heartache and the all too many CDH warriors that have earned wings this year, it's hard to write about how our CDHer is defying his odds, his less than 50% chance of survival odds.
Our son was diagnosed with CDH at 20 weeks. We were given bleak if any hope that he would survive the third trimester. Everything that was supposed to be "down" below his diaphragm was up in the chest...how in the world could that be? It was as if I was stuck in some weird sci-fi movie. I kept telling myself, "this is a dream." We were being prepared by our medical professionals for the worst, for the death of our son. It was opposite of what was supposed to be happening. They were supposed to be preparing us for birth, the choice between meds/no meds and talking about 10 fingers, 10 toes, etc. We were supposed to be sharing our ultrasound images with family and talking about that little fuzz being hair and wondering if he would have my eyes and Barry's chin. But instead we were explaining to family members where the organs were on the image and how this was not a normal picture. It was not a dream, it was happening and we had to get on board and make decisions that ultimately I believe saved our son's life.
This was 2 years ago now and it seems like 10 years ago. It was so raw, so real at the time. I remember crying privately a lot but putting on a brave face in public. I remember looking at books that chronicled the development of a fetus and getting so mad that there wasn't a book like this for CDH parents with images of what their child looked like, organs out of place but happily floating around in uterine bliss.
We are ok, we lived this ordeal and our son survived it. He is a living breathing miracle walking around for everyone to see. I am never going to be able to say thank you enough for my miracle and I'm blessed to have a miracle in my lifetime.
Now to the future of CDH...what I see is a world where all CDH parents have a support system, education, resources, and tools to make the best decisions about care. I see a world where research for CDH is happening all over the world not just in select hospitals. I see a world where my son doesn't share a scare with thousands of other CDHers. I see a world where CDH is synonymous with Cystic Fibrosis, with Spina Bifida, with Leukemia. I see a world where CDH doesn't happen anymore because we identify the root cause.
I know there are many CDH parents out there that are making a difference. Many of them have lost babies and many have survivors, but regardless they are committed to changing the face of CDH. The CDH community can work together to make this happen and I hope 2010 a year of real change for CDH.
Our son was diagnosed with CDH at 20 weeks. We were given bleak if any hope that he would survive the third trimester. Everything that was supposed to be "down" below his diaphragm was up in the chest...how in the world could that be? It was as if I was stuck in some weird sci-fi movie. I kept telling myself, "this is a dream." We were being prepared by our medical professionals for the worst, for the death of our son. It was opposite of what was supposed to be happening. They were supposed to be preparing us for birth, the choice between meds/no meds and talking about 10 fingers, 10 toes, etc. We were supposed to be sharing our ultrasound images with family and talking about that little fuzz being hair and wondering if he would have my eyes and Barry's chin. But instead we were explaining to family members where the organs were on the image and how this was not a normal picture. It was not a dream, it was happening and we had to get on board and make decisions that ultimately I believe saved our son's life.
This was 2 years ago now and it seems like 10 years ago. It was so raw, so real at the time. I remember crying privately a lot but putting on a brave face in public. I remember looking at books that chronicled the development of a fetus and getting so mad that there wasn't a book like this for CDH parents with images of what their child looked like, organs out of place but happily floating around in uterine bliss.
We are ok, we lived this ordeal and our son survived it. He is a living breathing miracle walking around for everyone to see. I am never going to be able to say thank you enough for my miracle and I'm blessed to have a miracle in my lifetime.
Now to the future of CDH...what I see is a world where all CDH parents have a support system, education, resources, and tools to make the best decisions about care. I see a world where research for CDH is happening all over the world not just in select hospitals. I see a world where my son doesn't share a scare with thousands of other CDHers. I see a world where CDH is synonymous with Cystic Fibrosis, with Spina Bifida, with Leukemia. I see a world where CDH doesn't happen anymore because we identify the root cause.
I know there are many CDH parents out there that are making a difference. Many of them have lost babies and many have survivors, but regardless they are committed to changing the face of CDH. The CDH community can work together to make this happen and I hope 2010 a year of real change for CDH.
Wednesday, September 23, 2009
Calling all volunteers...
Hi all,
Most of you know that last year Jaxson's Jog benefited a relatively new CDH organization called Global CDH. I specifically picked this organization because their mission is to help support parents with the emotional and financial hardships of a NICU stay and the challenges of taking a CDH baby home. I recently began volunteering as Communications Advisor for the organization. I assist with general communications as well as the search marketing and social media efforts.
At my first staff meeting, an announcement was made that there are additional volunteer staff positions available, specifically in the areas of Finance, HR and project management. If you are interested in learning more about these opportunities please email me at sarah.mayer@globalcdh.org.
On a Jaxson note...I can hardly believe that he is 16 months already. He is doing so much now, so much so that I cannot keep up with tracking it all. He's walking, almost running, talking (he knows body parts, animals and their sounds, hot and cold, car, truck, choo choo train and names of family members) and growing well. He's back on the growth chart for his weight, which was obviously a concern. He was getting extra calories in his milk and added fats/calories in his diet. This strategy put him back on the chart. In general, he eats some things really well (bananas, strawberries, waffles, toast, pasta, sweet potatoes), but I'm working towards making sure his diet is more balanced.
We joined My Gym, which is a gym just for kids. He loves it and we love that he gets to interact with other kids his age. I was happy to find that they have hand sanitizer everywhere, so that put me a little at ease in terms of Jax getting sick from going there.
Health-wise Jaxson is doing great - we're loving our new pediatrician, as she's made sure that he's seeing the right specialists (like Gastro, Pulmonology, Children's Alliance, etc) and even though Jax doesn't have very many long term effects from CDH, she takes his medical history into consideration when evaluating him. Something the other pediatrician wasn't doing.
Also there are several CDH babies in the NICU or on the way, so please keep them in your thoughts/prayers.
Most of you know that last year Jaxson's Jog benefited a relatively new CDH organization called Global CDH. I specifically picked this organization because their mission is to help support parents with the emotional and financial hardships of a NICU stay and the challenges of taking a CDH baby home. I recently began volunteering as Communications Advisor for the organization. I assist with general communications as well as the search marketing and social media efforts.
At my first staff meeting, an announcement was made that there are additional volunteer staff positions available, specifically in the areas of Finance, HR and project management. If you are interested in learning more about these opportunities please email me at sarah.mayer@globalcdh.org.
On a Jaxson note...I can hardly believe that he is 16 months already. He is doing so much now, so much so that I cannot keep up with tracking it all. He's walking, almost running, talking (he knows body parts, animals and their sounds, hot and cold, car, truck, choo choo train and names of family members) and growing well. He's back on the growth chart for his weight, which was obviously a concern. He was getting extra calories in his milk and added fats/calories in his diet. This strategy put him back on the chart. In general, he eats some things really well (bananas, strawberries, waffles, toast, pasta, sweet potatoes), but I'm working towards making sure his diet is more balanced.
We joined My Gym, which is a gym just for kids. He loves it and we love that he gets to interact with other kids his age. I was happy to find that they have hand sanitizer everywhere, so that put me a little at ease in terms of Jax getting sick from going there.
Health-wise Jaxson is doing great - we're loving our new pediatrician, as she's made sure that he's seeing the right specialists (like Gastro, Pulmonology, Children's Alliance, etc) and even though Jax doesn't have very many long term effects from CDH, she takes his medical history into consideration when evaluating him. Something the other pediatrician wasn't doing.
Also there are several CDH babies in the NICU or on the way, so please keep them in your thoughts/prayers.
Monday, September 14, 2009
A nugget of info that helped us...
When we were making the tough decision on where Jaxson would be born, a Canadian friend of ours sent us this study about how survival rates were more favorable at hospitals that saw a high volume of CDH cases. Here's the link to the study: http://www.jpedsurg.org/article/S0022-3468(04)00040-5/abstract.
Children's hospital here in Pittsburgh sees 12 CDH cases on average every year (as of 2008) and CHOP's number of CDH cases was around 45-50 when were were researching hospitals. CHOP's number may be different now, I don't know for sure. We had many reasons for choosing CHOP, but one was this info about high-volume vs low volume.
We asked all of the hospitals we researched: how many CDHers they treat a year, what is their survival rate, and what is their ECMO philosophy (this was a huge decision factor for us). Anyway, just wanted to share because I forgot about that particular study!
Children's hospital here in Pittsburgh sees 12 CDH cases on average every year (as of 2008) and CHOP's number of CDH cases was around 45-50 when were were researching hospitals. CHOP's number may be different now, I don't know for sure. We had many reasons for choosing CHOP, but one was this info about high-volume vs low volume.
We asked all of the hospitals we researched: how many CDHers they treat a year, what is their survival rate, and what is their ECMO philosophy (this was a huge decision factor for us). Anyway, just wanted to share because I forgot about that particular study!
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