The Search for Pants

My son, Eddie, has Marfan's Syndrome, which is a genetic mutation that causes the connective tissues to stretch. This includes the bones and muscles. So, he ends up being very tall and thin for his age.

In practical terms, it means that when I buy him pants, if they are long enough, they are too big at the waist. If I buy to fit the waist, he has high waters. So, whenever I go to a department store, or even places like K-Mart or Target, I search for pants that could fit him.

He also doesn't seem to like jeans. I am not sure yet, but I suspect it's because the texture is too rough. When he was a baby and toddler, with regard to his Asperger's Syndrome, he didn't like me to wash his feet with a washcloth or his body and hates cleaning his ears with Q-tips and trimming his finger and toe nails. So, he has a mild touch sensitivity. This means that now he only likes to wear athletic-type sweat pants. I've tried the twill cotton pants, but they are too "fancy" for him. I have even recently resorted to going to the men's section and getting XS or S track pants, but they are still big at the waist, so I finally attempted to use my little sewing machine (bought new two years ago, but finally took it out of the box). I tried to tighten up the waist on one pair of pants; I got it done, but it's not pretty!

So, yesterday, instead of working in my office (a madhouse on campus - it was Dad's weekend and a home football game), my folks and I ran over to Albany to go to a holiday craft bazaar. Then, we went to the mall and looked around at Old Navy and Target as he needed some brown pants and a green shirt for his Christmas program at school. Then, we went to Kohl's.

I found a forest green shirt for him at Old Navy and then, as luck would have it, saw that Kohl's was carrying skinny Levi's 511's. Hardly anyone sells skinny pants for boys anymore - hmm, wondering if that's a result of the "obesity epidemic" in our country - so I was excited. And, then, as luck would have it, they had the skinny jeans in a chestnut brown color! Yay!

The big test will be later, when I ask Eddie to try his new pants on. If he likes them, I will probably get at least another pair. But they were expensive (at least compared to what I usually spend).

If not . . . the search continues . . .

Port Inserted, Eddie is Okay

Yesterday was my first almost-full day at work in about two weeks. I took it relatively easy and was happy that I had a few hours to prepare for my noon class. I think I am managing to get that class caught up with my string of absences. That feels good. I think I'm engaging the students, too.

Then, it was off to my appointment at the hospital to have the P.A.S. port inserted (installed?). There was some delay waiting for the IV nurse and then they thought that they had an emergency heart cath to do before me. The good news is that a softball buddy of mine was part of the crew who worked on me to put the port in my arm. Thanks, A! It was nice to have the distraction of chatting and visiting with you. They gave me some mile sedatives, so I think I was coherent, but relaxed. I only felt three pokes/pinches the whole time. It was over fairly quickly (i.e., in and out of the procedure room in about 45 min) but then they had to observe me in Short Stay for an hour to be sure I was recovering without any problems. I got home about six. So, it was a long day.

I had dinner and then rested in my room. I think I fell asleep at 7, woke up at 8, fell back to sleep until after 9pm, then I got ready for bed and was probably asleep by 9:30pm. I may have awakened once, but at 2:30am, I woke up to a weeping wound dressing. Sigh. Finally got up at 3:30 to change it and fell back to sleep at 4:30.

Then, it was up around 5:45 to get ready to go to Portland. Eddie had an appointment at Doernbecher's Children's Hospital for a check-up for his Marfan's Syndrome. A huge thanks to dad for driving - they didn't want me driving today because of the sutures in my arm. It was a good visit - his heart was fine. So, we continue to monitor him in case his aorta changes in the future. He will see the ophthalmology specialist in a couple of weeks.

We stopped at Macy's to look for a sweater/shrug/fancy jacket to go over my black dress for Puttin' on the Pink, which is on Saturday. I think I found a nice sweater, with big sleeves for the armpit and for the port. I need to put them on together to be sure.

We got home about 3:45pm and I've been relaxing since. Particularly since I now have diarrhea. Probably from all the meds yesterday. Sigh. My dressing also started leaking again; I need to change it, but I'm waiting as long as possible so it can last throughout the night. I wish . . . .

Marfan Syndrome

Today, my son's father, Tim, took Eddie to Doernbecher's Children's Hospital for a Marfan Syndrome evaluation.

From the time he was born, Eddie has had long limbs, fingers, and toes. He had a traumatic birth - he had a low Apgar score because his umbilical cord was wrapped around his neck twice and they put him under oxygen for a couple of hours before we could see him. While we stayed in the hospital, it was hard to get him to eat; he slept a lot. He finally ate a little bit and then on his second day of life, I noticed blood in his diaper. He was bleeding from his rectum. He apparently lost a lot of blood (well, that's what they told me, but I was never told how much) and was transported to the Hartford Children's Medical Center (we were living in eastern Connecticut at the time) after they hooked him up to IV fluids. After a nightmarish few days and many evaluations and tests, the docs decided that Eddie had an "ischemic bowel", which means that his large intestine (or was it the small one? can't remember) was not getting oxygen. As near as the docs could figure, the lack of oxygen at birth caused his body to send what oxygen there was to essential organs and not to others, including his bowel. Some of the bowel tissue died and then when the milk/food passed through, it was like sloughing off a scab and caused bleeding. After 16 days in the NICU, we were able to bring him home. He had to go about 10 days without eating anything - his only nourishment was through the PIC-line. But when I was able to start nursing him again, he no longer had bloody stools, so the bowel had healed. It was a very scary time and we are just thankful that it all turned out okay.

But among the evaluations they conducted was one for Marfan Syndrome. Marfan Syndrome is characterized by a genetic mutation that affects the connective tissues in the body. Characteristics of someone with Marfan Syndrome include elongated long bones, lax ligaments, flat feet, potential heart problems, particularly with the valve in the aorta, problems with lens dislocation in the eyes, maybe problems with lungs collapsing, among other things.

At the time, they decided that Eddie didn't have Marfan Syndrome, but his doctor at Shriner's thought that he should be evaluated again (we've taken him to Shriner's because he walks on the inside of his feet so much that his physical therapist thought it might cause problems in his bone/muscle development in his feet; he was seeing a physical therapist to help strengthen his long muscles). The appointment was today.

The verdict? That Eddie does indeed have some of the Marfan characteristics. They want him to have the ophthalmologists at the Casey Eye Institute in Portland evaluate his lenses in his eyes (after I finished my undergrad, I worked at the Casey Eye Institute before it became the Casey Eye Institute and I still know folks there) and they also drew his blood to see if he has the genetic mutation. He had an echocardiogram, but they didn't see any problems there.

So, what does this mean for Eddie in practical terms? Generally, the scariest problem is the problem with the heart and so far, it's fine (although the muscle there can deteriorate, so it means that he should be monitored for the rest of his life). If he does have dislocated lenses in his eyes, I think he could get a lens replacement or maybe just get eyeglasses to help him should he have vision problems (the lens might be off-kilter, causing vision distortions and the glasses can help that). He will need to avoid strenuous, contact sports - he's not too interested in them anyway, so not a big deal there. He may need some adaptions at school, such as typing things instead of writing because of the lax ligaments in his fingers. Otherwise, he should be able to live a long, healthy life.

I'm still digesting the news. I'm okay, for the most part. It just means that there will have to be some follow-up and on-going check-ups to make sure the worst problems, such as the heart or lungs, don't become major. It's doable. It is what it is. He's okay. He's happy. He's doing well in school.

Can you tell I'm taking a deep breath?