Blood Pressure Followup #1

I'm taking Erik in for a BP check today. Update to follow.

Update: Erik's blood pressure was 106/64, which is a much less frightening value than the last check. I can even find this on the normal pediatric chart, which is a vast improvement from last time. Erik was much calmer during the process, although he was clearly not happy with it, and that seemed to help his numbers. His extensive blood work, including calcium, came back completely normal.

Mi Sonador

Brian walked me through the front door of the church last weekend instead of sneaking through the side door to find Marla, Erik's aide. Brian carried Erik in his arms past the long rope connected to the happily clanging bell above our heads. Our pastor saw us coming, and his eyes met mine for an almost uncomfortable amount of time. I could tell he was going to say something to me but wasn't finding the words in time. He took my hand and thanked me for my letter, telling me that he was in need of a little inspiration. He admitted to me that it was nice to have something to occasionally remind him why he is doing the job that he does. I really didn't know what to say in return except thanks. I then smiled and placed the palm of my hand on the scratchy, brown tweed of his suit jacket as I passed by. Later on in the service, he showed this video to the congregation. It's amazing to me what is possible and frightening how easy it is to put limits on ourselves and our children. It's even easier to just give up and quit dreaming.

Erik danced into hippotherapy like Mikhail Baryshnikov this week. He was up on his toes all the way from the Jeep to waiting area in the barn. His therapist studied him with her head cocked quizzically and then asked me if he was going through a growth spurt. That doesn't begin to describe how he seems to have shot up lately. I attempted to measure him at home the other day, but the process frightened him to death. He loves to snack, and he seems to be eating constantly these days. I believe that his Achilles tendons just aren't keeping up with the length of his legs lately. This used to scare me, but I have noticed it happens from time to time. All we can do is keep him stretched out and hope for an outcome that doesn't require surgery. Sometimes when he wakes up from his nap I work on his legs before he is conscious enough to escape. I have made a promise to myself that I will cram his orthotics on his legs more diligently this week in order to keep his feet flat.

His home blood pressure cuff arrived this week, but I have not been brave enough to attempt to take a reading without a bag of chocolate candy nearby to bribe him. His blood work to check his hormones and kidney function has been sent, and I am waiting for the results. He is savvy enough about the medical field to understand what happens at the laboratory. I thought he was clueless as he calmly played with the toys in the waiting room, but when they called his name, he burst into tears and pleaded, "I don't want to!" I prepared to hold him down in the chair in the back room and assured the phlebotomists he doesn't hold a grudge. At least not against them.

Right now I am sitting at my desk at this ungodly hour with an amused smile playing over my face. Using the Internet, I just successfully identified the word Erik said when I asked if he wanted a cracker and placed a whole wheat Ritz in his hand yesterday.

After he studied it, he seemed slightly annoyed and hissed, "Galleta."

I see that's Spanish for hardtack. Or cracker.

A Tale of Two Kidneys

Erik and I headed to the children's heart center today for a blood pressure check before his renal ultrasound at the hospital. When Erik approached the nurses' station carrying his filthy stuffed dog, the woman behind the counter went into the next room and announced, "Stinky Dog is here for his blood pressure check." Today his blood pressure had come down substantially into about the 70th percentile.

The blood pressure cuff is extremely upsetting to Erik, and while he was being calmed, one of the staff members motioned for me to talk quietly with her in the hall. Erik's photo from a prior visit is tacked to the bulletin board above the nurses' station. She told me that a young woman with Williams syndrome came in recently and pointed Erik's photo out to her mother, asking if she thought Erik had WS, too. After they studied his face, they apparently both came to the conclusion that he did. Once again, I have likely crossed paths with this other family I know of but have never met. It's strange. I can never confirm this is the same woman, as privacy laws do not permit the release of her identity, but it is strangely comforting to know she has been in the same exam rooms and waiting rooms we have. Maybe someday we'll meet.

From there, Brian joined us, and we took the stairs leading to the long hallways of the hospital. After we told another woman in floral scrubs working in the imaging department who Erik was, we sat in comfortable faux leather chairs and attempted to get Erik to use his "inside voice" to let the man across from us continue to sleep. I panicked when I realized Stinky Dog had been abandoned somewhere in the building and made a note to myself to locate him after the study. Thankfully, Erik did not notice his absence.

We were finally led to a tiny waiting area separated from a glossy hallway by a saltwater fish tank. I made myself comfortable in the same chair I sat in while I was miscarrying my first baby. The same chair I sat in after I lost my second baby. And the same chair I sat in a handful of times when the doctor wanted to take a look at Erik inside of me to make sure he wasn't leaving my body like the others did. I felt a twinge of anxiety when I sat down, which was quickly replaced by a horrible craving for Chinese food. That tank with all of the fish bobbing in it has the same effect on me. Every time.

A boy of about 12 sat in the corner quietly playing a handheld video game. His mother held a computer on her lap and played solitaire. They talked about another family member who was apparently hospitalized. Erik approached them and said hello. He asked them both if they vacuumed, and the woman laughed and said that she did but that she wished her son did it more often. She introduced her son and asked Erik's name. After a few minutes of conversation, she looked at me with the very same slightly confused, intrigued look on her face I have seen many times on faces after Erik has gently held a stranger's hand and looked deep into their eyes.

She asked, "Is he always this happy?"

I smiled and told her that he was most of the time. I enjoy the reaction Erik gets from strangers. He's different, but at this point, people can't seem to put their finger on exactly why.

A friend or family member came into the small area with an update on their loved one, who apparently was hungry and wanted to sit up and eat with them in his room. Erik approached the newcomer and held her hand gently. She smiled at him and answered his questions about vacuum cleaners, looking to us periodically for a translation. They then all left us to eat lunch and wished us a nice day.

An ultrasound technician came out to get us and lead us around the corner into the small, dark room I am so familiar with. I hopped up onto the table by the machine and invited Erik to join me. He immediately began to cry. When the technician's attempts to calm him down failed miserably, I explained he was missing the gene that controls anxiety. I then gave him a crash course on elastin and renal artery stenosis in Williams, and he nodded his understanding. He mentioned another connective tissue disease, and I felt comfortable with his response. I finally was able to hold Erik still while his back was smeared with clear, warm jelly and the ultrasound wand was held closely to his body. Brian made faces at Erik, and I pressed my face into Erik's hair. Images were successfully obtained of the inside of Erik's lower abdomen. Erik was obviously very anxious, but the tears stopped. He repeatedly asked if we were all done. I told him no but promised him chocolate when the study was finished. When the technician saw the bladder and asked Erik if he needed to go to the bathroom, Erik was obviously deeply insulted. I giggled. Any reference to using the potty makes Erik very irritated.

The technician left us and let the radiologist examine the images while I went into the little dressing room and fixed the wild hairdo I had been afflicted with from holding Erik down on my side for so long. The tech eventually returned and reported that everything looked healthy with no evidence of stenosis or stones. Erik was asked if he wanted a sticker, and he said that he did not. He was already talking about locating the car. We left the department and found our way back down the hall. Stinky Dog was sprawled atop the registration desk waiting for us. On our way back out of the building, I ran back into the heart center to pick up Erik's heart-shaped foil balloon, which was still tethered to a chair in the nurses' station. I gave the staff a thumbs up and said I would be talking to them soon.

We exited the place out into the crisp air and sunshine, knowing all was very well.

At least for now.