bait and switch

So, our little family sat poised on the edge of my bed, watching the CBS Evening News, munching on popcorn... but no interview with Carl. Evidently, Carl's boss talked with Byron Pitts, the news anchor who interviewed Carl, today and Pitts is the one who said the segment would air tonight. However, his editor opted last minute to show more coverage of the Democratic National Convention instead. The kids are pretty disappointed, but Carl said the show was taped awhile ago and will air at a later date. I'll let you know when they schedule a date.

Just FYI, Byron Pitts is a stutterer too, which amazes me, because he's a news anchor for a major broadcasting company.

My brother is being interviewed on CBS Evening News tonight!

How cool. My little brother is a speech pathologist and he works for the American Institute for Stuttering in New York City. My dad posted this on his facebook today.



"I just received a call from our son, Carl, letting me know the CBS Evening News will be running a feature tonight (8-27-08) about his employer: the American Institute for Stuttering (http://www.stutteringtreatment.org/). Carl works as a speech pathologist at AIS and is interviewed in the segment. They are running it tonight in order to coordinate with Joe Biden's speech this evening at the Democratic National Convention. As an adolescent Biden suffered from a debilitating stutter, and he was the featured speaker at AIS's annual fundraising banquet in Manhattan this year. I was Carl's guest at the event, and Biden's speech was unforgettable. He claims that dealing with stuttering was the single most galvanizing and important experience of his life. The reporter who interviews Carl, Byron Pitts, is also a former stutterer and served as the emcee at the same AIS fundraiser where Biden spoke.
If you are unable to watch the show this evening, I'm told the clip will be available for later viewing on the CBSNews.com website. I apologize for the late notice; they actually did the interview a few weeks ago, but moved it up in the schedule after Obama chose Biden as his running mate.
You can see a small part of Biden's speech in a clip on YouTube (Carl and I appear briefly) - http://www.youtube.com/watch?v=Hwk-pi5SNe4
And in case you missed it, the MTV show True Life did an episode on stuttering. Carl is interviewed briefly in the segment focusing on one of his AIS clients. If you have not seen it, here is the link: http://www.mtv.com/ontv/dyn/truelife/episode/episode.jhtml?episodeId=127106"

If you have time, check it out! We're all so proud of him and what he does at AIS.

come on, take a guess

Seeing as this is the last Monahan baby, at least as far as our plans go, we're a little preoccupied with guessing his hair color. Will we get ALL redheads? Or, will he be the only one who has hair more like his mama. We're curious to know what you think and, to be honest, the third trimester isn't feeling too great and this is a fun way to pass the time until he gets here. (Not like I don't have plenty to do... but you know what I mean.) Come on lurkers, speak up. ;) There's a poll to the right of this page.

it's who they are

Matt and I had to laugh when we heard this mini conversation with the kids in the van on the way to church this morning. If you know my kids and their personalities, you'll know how perfectly this describes their differences.

Pulling out of the driveway, with Grami and Papi driving ahead of us...

Dana- (a little put out) "O Man, we're gonna lose the race!"

Janie- (adult-like and irritated with her brother) "I don't want to be in a race anyway."

Clara Joy- (excitedly kicking her legs) "Oooo! I wanna race! I wanna race!... I wanna run!"

More Marfan

I met with a genetic counselor yesterday at Regional Obstetrics, the local perinatology office. I wasn't sure what to expect, but thankfully I was able to talk with the counselor for a long time and have an ultrasound and check up with Dr. Kipikasa (sp?). All in all, I feel very reassured that Marfan or not, I can expect a relatively safe delivery with Jonathan. Dr. K told me not to lose sleep over it (too late) and very calmly explained what they would do if my aortal root were dilated. He said I would have to deliver Jonathan passively, with an epidural, heart medicine, and forceps, but honestly, he was so calm about the whole thing that I didn't freak out. That says a lot for bedside manner.

Do I have Marfan? I don't know and they didn't know either. It's a complicated diagnosis to make. They did refer me to meet with a geneticist in September, after I've already had my echocardiogram. After meeting with the geneticist and the cardiologist, I'll see Dr. K again and they'll decide what to do from there. If the aortal root is enlarged, which would confirm the Marfan diagnosis, then I would have a passive delivery. If the aorta looks great, but they still think I have Marfan, then I'll have a normal delivery, but still technically be higher risk than the average woman in labor. If they say I'm perfectly healthy and are certain I don't have Marfan, then I'm in the clear and no worries about the delivery or my kids.

More waiting, but we have a game plan. They know what I know about my family and I'm in good hands. I'm counting my blessings and trusting that God has us securely in his hands.

sheer vanity

Making pies, eating pies

After a fun morning of blueberry picking with a few good friends and all of our hot sweaty children, I decided to try to make my first blueberry pie. In an effort to economize, I decided to use up some overly ripe peaches in another pie. Why heat up the house for one pie if you've got room for two and the oven's already on?

Why is baking a pie so satisfying? Maybe this is how neatnicks feel when they've cleaned their whole house. I don't know for sure, because I'm hardly neat and tidy. I do love the simple pleasure of making something tasty with my own two hands, especially when I get to see the whole family loving every messy bite.

still waiting

So apparently I don't know the difference between an EKG and an echocardiogram, and there is one. When I asked my midwife to order an EKG for me to be screened for Marfan-related heart issues, she happily did so. However, I didn't know that I really needed an echocardiogram and I didn't know that they were two different things. I'm sure she knew that, but she didn't know enough about Marfan to know what would be the appropriate test either. So, I went in for my EKG today and realized that I was having the wrong test done. The technician who handled my test did reassure me that an EKG would be useful, but that I would for sure need both tests. Ugh. This basically means more waiting and appointments and struggling to make appointments because of childcare issues. Man, I wish my parents or at least some family lived close by.

In the meantime, I've learned a lot more about how Marfan could affect pregnancy and childbirth. IF my aortal root is abnormally large, which is a big IF (I don't know if I have the Marfan Symdrome anyway), then I would have to get an epidural and I would not be allowed to push Jonathan out. They would have to extract him when I was fully dilated, either with forceps (yipes!) or with the vacuum thingy. Mainly, the concern is that the pressure from pushing and straining through contractions could cause the aorta to dissect or rupture, which could kill me. Again a huge IF, because my aorta would have to be larger than normal, and I've already had three children with no trouble. There's also some risk of clotting, but I don't understand that completely. Supposedly, pregnant women with Marfan take a combination of Heparin and Beta Blockers for most of their pregnancies. If you know what these are and how they work, than you understand more than I do. Anyway, like I said, I'm waiting to know more, and trying to rest in the knowledge that God is in control of this, one way or the other. So far Jonathan is healthy and as far as I know, I am too. Both are blessings.

Dana speaks up

On the way back from night church last Sunday...

Dana:"Mommy, I want to be in charge of something."

midwife appt yesterday

So it appears that my placenta is no longer down low, which is very good news. Barring some last minute emergency or something else, I can deliver him without a c-section! It really is a relief. I've never had one and I don't care to have one. Obviously, if I needed one in an emergency, then I would happily do whatever was necessary to keep him healthy. In the end, that's the most important thing anyway.

I'm measuring huge for 27 weeks. The midwife in training who handled my appointment measured me twice, because she didn't believe it. I'm five weeks ahead in uterine size, which is pretty large. Jonathan is measuring about a week ahead in length and everything else, and I have a little bit of extra fluid, but the main culprit seems to be being pregnant four times. I suppose I shouldn't expect to look like the tiniest pregnant lady in the world ;).

He was awfully cute in the ultrasound. Janie came with me this time and she loved it. Maybe he knew his sister was watching, because he yawned on the screen for her. With as many ultrasounds as I've had in the last 6 years, I've never seen that. Even the ultrasound tech gasped and said he looked like a cutie. I have to agree.

On a more serious note... my dad has been diagnosed with a genetic disorder (disease?) called Marfan Syndrome. I have a 50% chance that I inherited it from him and if I did my kids have the same chance of inheriting it from me. It's kind of serious, but also pretty manageable. If I don't have it, the good thing is that I can't pass it to the kids. I could tell you more, but it would be way too long of an entry. The only issue that's really concerning to me is that if I have it, it could be of some risk to me when I deliver Jonathan. Many people with Marfan have an enlarged aortal root (where the aortal artery leaves the heart, on top??) which makes them much more likely to have an aortal aneurism (sp?). Evidently, during childbirth, the weakening of the arterial walls can cause them to rupture, due to the strain of pushing. I don't understand all of the details, but I'm supposed to have an ecchocardiogram (sp?) next Thursday, which would catch any abnormalities. I'm probably fine, but it will be comforting to know that for sure. If I do have an abnormality, then I'm not sure what will happen after that. I suppose we'll find out.

Anyway, thanks for reading this far and I'll update soon on the outcome. If you want to know more about Marfan, you're welcome to read the description below. It comes from the Marfan Foundation's website, which is located at www.marfan.org.

"The Marfan syndrome affects people in different ways. Some people have only mild symptoms, while others are more severely affected. In most cases, the disorder progresses as the person ages. The body systems most often affected by the Marfan syndrome are:

* Skeleton
- People with the Marfan syndrome are typically, but not always, very tall or taller than unaffected people in their family, slender and loose jointed. The Marfan syndrome affects the long bones of the skeleton. Therefore the arms, legs, fingers, and toes may be disproportionately long in relation to the rest of the body. A person with the Marfan syndrome often has a long, narrow face, and the roof of the mouth may be arched, causing the teeth to be crowded. Other skeletal abnormalities include a sternum (breastbone) that is either protruding or indented, curvature of the spine (scoliosis), and flat feet. For more information: Orthopedic Concerns Brochure; excerpt from The Marfan Syndrome

* Eyes
- More than half of all people with the Marfan syndrome experience dislocation of one or both lenses of the eye. The lens may be slightly higher or lower than normal and may be shifted off to one side. The dislocation may be minimal, or it may be pronounced and obvious. Retinal detachment is a possible serious complication of this disorder. Many people with the Marfan syndrome are also nearsighted (myopic), and some can develop early glaucoma (high pressure within the eye) or cataracts (the eye's lens loses its clearness). For more information: Ocular Concerns; excerpt from The Marfan Syndrome; Pediatric Eye Issues; Management of Dislocated Lenses
.

* Heart and blood vessels (cardiovascular system)
- Most people with the Marfan syndrome have problems associated with the heart and blood vessels. The valve between the left chambers of the heart is defective and may be large and floppy, resulting in an abnormal valve motion when the heart beats. In some cases, the valve may leak, creating a "heart murmur," which a doctor can hear with a stethoscope. Small leaks may not cause any symptoms, but larger ones may result in shortness of breath, fatigue and palpitations (a very fast or irregular heart rate). Because of faulty connective tissue, the wall of the aorta (the large artery that carries blood from the heart to the rest of the body) may be weakened and stretch, a process called aortic dilation. Aortic dilation increases the risk that the aorta will tear (dissect) or rupture, causing serious heart problems or sometimes sudden death. For more information: Cardiac Concerns; excerpt from The Marfan Syndrome; Emergency Diagnosis and Aortic Dissection

* Nervous system
- The brain and spinal cord are surrounded by fluid contained by a membrane called the dura, which is comprised of connective tissue. As people with The Marfan syndrome get older, the dura often weakens and stretches, then begins to weigh on the vertebrae in the lower spine and wear away the bone surrounding the spinal cord. This is called dural ectasia. These changes may cause only mild discomfort or may lead to radiated pain in the abdomen or to pain, numbness or weakness of the legs. For more information: Dural Ectasia; excerpt from The Marfan Syndrome

* Skin
- Many people with The Marfan syndrome develop stretch marks on their skin, even without any significant weight change or pregnancy. These stretch marks can occur at any age and pose no health risk. The stretch marks tend to appear at sites subject to stress such as shoulders, hips and lower back. The stretch marks require no treatment. In addition, people with the Marfan syndrome are also at increased risk for developing an abdominal or inguinal (groin) hernia where a bulge develops that contains part of the intestines. This requires medical treatment.

* Lungs
- Restrictive lung disease, primarily due to pectus abnormalities and/or scoliosis, occurs in 70 percent of persons with MFS. In addition, because fibrillin is expressed in the lung and is associated with elastin there, Marfan fibrillin –1 deficiency is thought to affect both lung development and homeostasis. Spontaneous pneumothorax (collapse of the lung in the absence of trauma) and early emphasema, without a history of smoking, may be consequences of the fibrillin-1 deficiency. Sleep-related breathing disorders, such as snoring and sleep apnea, are also associated with Marfan syndrome, even when the person is not overweight. For more information: excerpt from The Marfan Syndrome; Marfan Syndrome and the Lungs"