80% Relieved

I spent all last week researching, panicking, and have random crying spurts. I called my friend Beth (of Beth and Danno in the Virgin Islands). I was finally ready to embrace the worst case scenario. I wanted to hear all about what their life was like with a baby with CF. I was bracing myself for a very difficult conversation. Surprisingly, her words were very positive and encouraging. Her knowledge and strength showed me that the worst case scenario wasn't that bad after all.

I called my pediatrician to further discuss his medical history. I reminded him that he had never had many of the symptoms commonly associated with the condition (respiratory problems, pneumonia, greasy stools, etc). He informed me that some of the items in his medical history in fact HAVE been associated with cases of CF (ear infections & constipation). There are so many random conditions that are associated with CF that ANYTHING he's ever had could be a symptom. Great! To make things worse, he had a random throw up episode in the middle of the night. Weird! My kid hasn't thrown up since he was 'spit-up' age. I was up all night researching how throwing up fits into the cystic fibrosis puzzle. I later found out that my pediatrician used to run his own CF clinic. Might he be a little quicker to try to find a CF diagnosis? I think so. I was in the hairdresser chair having my hair colored during this pediatrician conversation, and I was absolutely bawling at his lack of optimism. My hairdresser is a good friend, and one of the most optimistic people I know, so I was glad to have her support after that awful phone call.

The next day Beth called me with a revelation. She informed me that the newborn screening for CF is a required test in the state of California and has been for a couple of years. He HAS TO have had this test. Now all I need to do is find it. That was not so easy. I called hospital records where he was born...no record of it. I called the pediatrics unit at the hospital...no record of it. I called the pediatrician(s)who treated him at birth...no record of it. Now I am pissed! This test is required in the state, and no one wants to be accountable for where the hell it is. After an entire day of going from office to office, Shane's mom figured out that all of the CF screening records for California babies are housed at Harbor General Hospital in LA. I called and had them faxed to my pediatrician. Low and behold...he is negative for the Cystic Fibrosis gene!!!! I am so unbelievably relieved.

The newborn screening checks for 80% of types of CF, so we are still going to have the sweat chloride test, but for now we can breathe a little easier. I am so grateful to Beth for all of her support. She was very happy for us to hear that he was negative. They live 3,000 miles away so there isn't much that I can do for them from here, but Cash and I will take every opportunity to contribute to the furtherance of CF research. It is because of proactive informed parents like her that CF is no longer a death sentence.

I have nothing but time to worry about this CF thing since the test doesn't happen for another million years (or so it feels like). So I started making phone calls today. I called my prenatal OBGYN to ask if I was tested to see if I am a carrier. Apparently I was not tested...dissapointing. I called the pediatrician who treated Cash when he was born to see if he was tested at birth. The good news is that he WAS tested at birth via one of the many many many heel pricks he received. The bad news is that they won't give me the results to that test over the phone. But if it had turned up that there was any indication, based on his baby blood work, that there was a problem...wouldn't they have alerted us to it???? A parent can only hope. So I am waiting waiting waiting for those results to show up in the mail.

I found a (OB) gynecologist who I really really like. I called her (crying), and she scheduled an appt for me to come in first thing tomorrow for genetic counseling (testing). If I can rule myself out as a carrier...voila! Problem solved...crisis over. I have a PPO plan, and hopefully any genetic testing done on me will come with little/no out of pocket expense (and so what if it does...it's worth my peace of mind to just pay for the damn test).

Scary Medical Stuff

So last month Cash went in for his routine check up. The doctor was only slightly worried about the fact that he wasn't gaining a lot of weight (as I blogged about earlier). Because of that he requested a stool analysis (I know...lovely). Over the next couple of days I collected the goods and turned them into the lab. Then last Friday (almost 4 weeks later) I got a call from a nurse in the pediatrician's office advising me that there was a slight abnormality in one of the test results. Apparently he is running a little low on an enzyme, which is sometimes indicative of cystic fibrosis. He was referred to Loma Linda U for a sweat chloride test to (hopefully) rule out the presence of CF.

Great! So now I am panicked and hysterically worried over the potential that my son might have a life threatening condition. The test isn't scheduled for another month from now. Really??? I'm supposed to go an entire month wondering about a life threatening illness that my baby may or may not have. I have very limited experience with this condition, but I do have (awesome) friends, Dano & Beth, who have a six month old who has the condition. Here's what they told me: it is a genetic condition and both Shane and I have to be carriers in order for him to have it. As far as we both know, there is no history of this in either of our families. I also know that it is not a death sentence, but it can be if not detected early and treated properly. If he does have it, we are looking a lifetime of breathing treatments, enzyme supplements, and diligent prevention of other illnesses like the common cold. I have so much more to learn from Beth, as she is extremely well informed, but I am not going to dive too far into this until after the test.

In speaking with my other (amazing) friend, Emily (who is also a medical school student doing her residency), I learned that it is pretty common for pediatricians to request this test based on the drop in weight, the deficiency of the enzyme, and other common risk factors. My mom works with infants with a variety of medical problems, and she commonly sees babies referred for this test with very little to suggest that they actually have the disease. The vast majority of these tests come back negative.

The test is not invasive and should be relatively painless for Cash. They will attach two little bands around his arm to collect sweat, and the salt levels in his sweat will be measured. I told Shane to take him outside, run him around, and lick him to see if he tastes salty!

I'm hoping for the best. I believe that if you invest enough negative energy in something, you can will bad things to happen. I decided that I'm not going to obsess over internet articles all day long, and I'm not going to make myself sick with worry until after the test. It's a routine test and it's better to be safe than sorry. As much as it worries me, I am thankful that modern medicine allows us to test for these conditions at the slightest indication of a problem. I am thankful for a diligent pediatrician, and I am thankful for the health insurance coverage which affords us the chance to stay on top of our health.

Cash, otherwise, is wonderful. He seems to say and do a little more everyday. He is trying so hard to communicate with us. He has so much to say...it's as if he is going to open his mouth tomorrow and speak in full sentences. He is ridiculously fast and climbs everything in sight. I couldn't ask for a more wonderful kid! I just hope everything is okay!

Chompers

We had our first visit to the pediatric dentist. She came highly recommended, and we absolutely loved her. She was very sweet and gentle. She even held Cash, put his shoes back on him when he threw them on the floor, and spoke a little baby sign language to him. Cash heard me tell her "thank you" at the end of the visit, so he demonstrated the sign for it. His teeth look great. He only has a couple which haven't come in yet (he started getting them at only 5 months old). She gave us some nifty tools for better baby brushing.

Disneyland

Cash had his first trip to Disneyland this week. It was a gorgeous day. The weather was perfect and it wasn't too crowded. He was enamored by everything. He loved (most of) the rides, and enjoyed just running around. We didn't bother to stand in the line to meet Mickey Mouse...we'll save that for another day.

Happy Birthday MJ!

Friday night, Mary Jane and I went to dinner for her birthday. She is a maniacal fitness freak so going to dinner ALWAYS means that we walk the 2 1/2 miles into town. We had lovely food, split a bottle of wine, and hiked home. Her husband has been in a six week fire academy, so I've been happy to have her all to myself!

Kamden

I realize I have been a little light on blogs about Kamden lately. That's because their mom recently moved back to Wrightwood. Up until February, Kamden was living with us full time. Now that she is back, she does a large part of the school and extracurricular stuff. We are back to being the weekend parents. The adjustment was difficult for me, as I had just gotten used to (and really started to enjoy) doing the full time work for both boys. I had school, homework, soccer, ski-school, etc. all figured out. It's hard to be so invested in something and then turn all responsibility over to someone else.

Oh well...such is life. This situation is best for everyone. His mom is a SAHM, and the upcoming fire season is going to dramatically increase my work load. Cash misses him soooo much. Every morning when he wakes up he goes straight to the couch to look for him. We go look at his picture on the refrigerator, and Cash says "awwww" and gives it a kiss. When Kamden was over last weekend Cash wouldn't leave his side.

Kamden is doing very well, though. His teacher has great things to say about his reading. He had a presentation at school last Friday and got an A++. He starts baseball soon...soo excited!


A dinner date we had after a day of skiing earlier in the year. (I realize it looks like we're in a bar, but it's also a pizza/hamburger joint)