Per our doctor's orders we are admitting Connor to the hospital tomorrow for a feeding tube. Please keep us in your prayers.
Thursday, August 28, 2008
Sunday, August 24, 2008
My worst enemy
For those of you who have kept in touch with Ross and I over the last few weeks - THANK YOU. We've really leaned on the support of our friends and family during these tough times. I really can't put into words what we've been going through, but I can say that I wouldn't wish it on my worst enemy.
We've been taking Connor to the pediatric GI specialist for two weeks now. The first thing the doctor did was switch Connor's food - thinking his problems are caused by a milk protein allergy. The second thing he did was put Connor on a reflux medicine. Last Friday we had an upper GI test performed on Connor and have confirmed that he has "silent reflux" - which basically means that he suffers, but silently. He doesn't spit up like most reflux babies, but he has an aversion to food because it's painful for him to eat.
To make things worse, Connor's officially been diagnosed with "failure to thrive". This diagnosis could be caused by several things, some scary - some not. As is common practice for FTT patients we had Connor tested for Cystic Fibrosis. The first test that was performed (a sodium/chloride test) came back inconclusive, so on Friday we headed to the lab for genetics testing on on three of us. In order for Connor to have CF, Ross and I would both need to be carriers.
Fact: 1:31 people are carriers of CF - a baby born to two CF carriers has a 25% chance of contracting the disease.
So now Ross and I are forced to wait. It takes 7-10 days for the results of the genetics testing. Without a doubt this is the longest, most painful wait of my entire life.
If Connor does have CF, then it is not the end of the world. CF treatment has come so far in recent years and with some significant lifestyle variations can mean a long and happy life. When Ross and I were kids, a CF patient had a life expectancy of 5 years old - now the life expectancy is 35 or beyond.
Either way, we're all extremely scared right now. I will never be able to describe the feelings or emotions that we're going through. This has already been the most horrific and excruciating experience in my life and it has changed me forever. Please keep us in your thoughts and prayers.
We've been taking Connor to the pediatric GI specialist for two weeks now. The first thing the doctor did was switch Connor's food - thinking his problems are caused by a milk protein allergy. The second thing he did was put Connor on a reflux medicine. Last Friday we had an upper GI test performed on Connor and have confirmed that he has "silent reflux" - which basically means that he suffers, but silently. He doesn't spit up like most reflux babies, but he has an aversion to food because it's painful for him to eat.
To make things worse, Connor's officially been diagnosed with "failure to thrive". This diagnosis could be caused by several things, some scary - some not. As is common practice for FTT patients we had Connor tested for Cystic Fibrosis. The first test that was performed (a sodium/chloride test) came back inconclusive, so on Friday we headed to the lab for genetics testing on on three of us. In order for Connor to have CF, Ross and I would both need to be carriers.
Fact: 1:31 people are carriers of CF - a baby born to two CF carriers has a 25% chance of contracting the disease.
So now Ross and I are forced to wait. It takes 7-10 days for the results of the genetics testing. Without a doubt this is the longest, most painful wait of my entire life.
If Connor does have CF, then it is not the end of the world. CF treatment has come so far in recent years and with some significant lifestyle variations can mean a long and happy life. When Ross and I were kids, a CF patient had a life expectancy of 5 years old - now the life expectancy is 35 or beyond.
Either way, we're all extremely scared right now. I will never be able to describe the feelings or emotions that we're going through. This has already been the most horrific and excruciating experience in my life and it has changed me forever. Please keep us in your thoughts and prayers.
Tuesday, August 12, 2008
Another year older
As my friend Jenifer so kindly reminded me, I haven't yet written about my birthday celebration. So here it goes...
It's funny, but each year my birthday is a little less spectacular than the year before. Now, don't get me wrong - I mean to say that each year is more special, especially considering that I get to celebrate it with my sweet husband, son and other dear family members. But to those of you who have helped me celebrate my birthday in the past you can probably agree that each year is less of a spectacle than the year before.
There was a time when I was notorious for coming home barefoot after a long night of bar hopping. I was usually barefoot b/c the amount of coordination needed to walk in high heels was not condusive to the amount of adult beverages needed to celebrate the passing of another year.
But as I grew up and started accepting more responsibility, it's safe to say that I learned to celebrate in different ways. This year, Ross and I dropped Connor off at his MiMi and Opa's house and we headed to Fredericksburg. We rented a bed and breakfast for the night (strangely breakfast never arrived...so I guess it was just a bed) and then hit the town. We found several places with live music and finally ended the night at Luckenbach. The next day we went to my parents house for a birthday lunch and then packed Connor up and headed back to San Antonio.
All in all it was a great birthday. Oh - I almost forgot - when we were in Fredericksburg, we met with our photographer Kathy Weigand (http://www.kathyweigand.com/) and ordered some prints from the photo shoot we had with Connor when he was only a week and a half old. I'm so excited about these photos and can't wait for them to arrive.
It's funny, but each year my birthday is a little less spectacular than the year before. Now, don't get me wrong - I mean to say that each year is more special, especially considering that I get to celebrate it with my sweet husband, son and other dear family members. But to those of you who have helped me celebrate my birthday in the past you can probably agree that each year is less of a spectacle than the year before.
There was a time when I was notorious for coming home barefoot after a long night of bar hopping. I was usually barefoot b/c the amount of coordination needed to walk in high heels was not condusive to the amount of adult beverages needed to celebrate the passing of another year.
But as I grew up and started accepting more responsibility, it's safe to say that I learned to celebrate in different ways. This year, Ross and I dropped Connor off at his MiMi and Opa's house and we headed to Fredericksburg. We rented a bed and breakfast for the night (strangely breakfast never arrived...so I guess it was just a bed) and then hit the town. We found several places with live music and finally ended the night at Luckenbach. The next day we went to my parents house for a birthday lunch and then packed Connor up and headed back to San Antonio.
All in all it was a great birthday. Oh - I almost forgot - when we were in Fredericksburg, we met with our photographer Kathy Weigand (http://www.kathyweigand.com/) and ordered some prints from the photo shoot we had with Connor when he was only a week and a half old. I'm so excited about these photos and can't wait for them to arrive.
Tuesday, August 5, 2008
Test Results
We got some great news today. Connor's test results came back - and everything is normal. They tested his liver and thyroid functions and it looks like everything is working as it should. Whew! We'll visit the gastroenterologist next week and hopefully have some more answers then.
In the mean time, check out Connor's new sunglasses.
Connor spent the weekend with his MiMi and Opa in Fredericksburg. The dogs went too. Here are a few pictures we shot at the ranch.
In the mean time, check out Connor's new sunglasses.
Connor spent the weekend with his MiMi and Opa in Fredericksburg. The dogs went too. Here are a few pictures we shot at the ranch.
Sunday, August 3, 2008
4 Month Doctor Visit
Connor had his four month doctor visit on Friday. He was such a little trooper with all his shots. As a matter of fact, I think he was less affected by them than I was. Thank goodness Ross came with us and held Connor while he endured all those needle pricks. Sadly, the shots were the last of our problems that day. Our doctor is really worried about his weight gain - or lack thereof. At four months old, he weighed in at only 11lbs (3 1/2 pounds more than his birth weight). To put that into perspective, four month old babies should be close to double their birth weight. Since Connor was 7lbs, 8 ounces at birth, he should be around 14-15 pounds by now. What's worse is that he no longer registers on the growth curves. As of Friday, he's dropped off the chart completely.
The doctor sent us to the lab to get some blood work done. Poor sweetie had shots in each leg and then had blood drawn out of both arms. He was covered with little band aids by the end of the day. The labs are checking Connor's liver and thyroid function to ensure they are working properly. In addition, the doctor referred us to a gastroenterologist and nutritionist to run some additional tests. In the mean time, we're supposed to keep feeding him formula and squeeze in as many feedings per day as possible.
The silver lining here is that he's doing really well with his length and head circumference. Which according to the doc. means that he's getting enough nutrition to grow, but he doesn't have enough left over to pack on the extra baby fat that he needs. Needless to say, Ross and I are really worried about our little angel. Hopefully, we'll get some good news this week after our visit with the specialist.
The doctor sent us to the lab to get some blood work done. Poor sweetie had shots in each leg and then had blood drawn out of both arms. He was covered with little band aids by the end of the day. The labs are checking Connor's liver and thyroid function to ensure they are working properly. In addition, the doctor referred us to a gastroenterologist and nutritionist to run some additional tests. In the mean time, we're supposed to keep feeding him formula and squeeze in as many feedings per day as possible.
The silver lining here is that he's doing really well with his length and head circumference. Which according to the doc. means that he's getting enough nutrition to grow, but he doesn't have enough left over to pack on the extra baby fat that he needs. Needless to say, Ross and I are really worried about our little angel. Hopefully, we'll get some good news this week after our visit with the specialist.
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