Hearts and Seizures and Kidneys and Eyes

We have some medical updates and news as of late.

Heart: Awhile ago we learned that there is an elevated risk of cardiac problems for babies whose moms are on seizure medicine and who have seizures. So the doctors do a detailed heart scan at 22 weeks where they look at all the parts of the heart and the blood flow and use a lot of words whose meanings I don't know.

Last week they did the scan of the baby's heart and everything checked out normal. It took the technician 30 minutes to complete the scan because Peapod wouldn't hold still. That kid is constantly moving. He must be taking notes from his brothers or something because he was flipping around in there like a gymnast and driving the technician crazy. She suggested we name him Speedy, which will definitely be worth considering, based on the boys other name suggestions. Which have been, among others:

Zamboni
Lasagna
Slapshot
Gorilla
Kevin Bacon
Fred
Balcony
Alcohol

So all is good on the pregnancy front, aside from the fact that I'm ready to hold this child in my arms, as I so eloquently wrote about here.

Seizures: I haven't had any since my last one about a month ago that scared us. I wrote about it here. A huge blessing has been that my wonderful mother-in-law has been coming over four mornings a week to just be here for two hours before she goes to work. I hadn't thought of her as a possibility because she works full time, but she works across the street from us and can come over and be here for roughly the first two hours I'm awake. This is huge! The boys love having her here and she has been able to get all kinds of cross-stitching done on her grandchildren stocking projects.

When the baby comes we will try to have something else in place for the other one day a week when she can't make it, but what a huge relief it is to have her come over! It gives us, especially Brian, peace of mind to know that if his pregnant wife has a seizure, she isn't alone in the house with 3 year-olds.

Kidney: On another medical issue that came up a couple weeks ago is that we found Clark has an abnormality with one of his ureters (tubes in between kidneys and bladder) which seems to be causing him occasional pain. The urologist doesn't think his back pain (which he complains about when he needs to go to the bathroom, but not every time) is related to the abnormality so he sent us back to the pediatrician to check out everything else again. Nothing else seems wrong so we are now documenting every time he complains of pain. Apparently the abnormality with the ureter doesn't normally cause any pain unless there is a much more serious problem, which results in all sorts of horrible symptoms such as projectile vomiting. Anyway, we will most likely be taking Clark in for some pretty invasive tests (think catheters) soon to find out if there's something else wrong.

Eye: As far as Cal's eye, everything seems to be fine since his alignment surgery in the fall.  He still patched four hours every day. He will actually see his eye doctor for a vision test this Friday and we think he may need a new prescription-- which is hopefully because his vision is still getting stronger!

So, there's the medical news of the household in case any of you were wondering...

Just for fun- Cal and the green wig

Cal's Alignment Surgery

On Friday Calvin had his third eye surgery; it was his sixth time under anesthesia. I guess maybe it gets easier, but it still is hard to carry him back to the operating room in paper clothes, put him on the operating table, and hold him while they strap the mask over his mouth and nose. I sing to him quietly in his ear and then he goes limp in my arms. I get a kind look from the anesthesiologist and usually from the doctor. This time, she squeezed my hand and told me they’d take good care of him. Also this time, the anesthesiologist was a different one. Up until then we’d had the same guy, most times with Cal and the one who did my epidural—he cried a little with me when Cal was three months old and the doctor told us he’d never see. This time the anesthesiologists’ name was Dawn, which made me comfortable for an absolutely irrelevant reason. It’s not often you meet a Dawn, so it felt meaningful.

The surgery was to align his eyes. His right eye had always turned in a little, but was turning more and more the past six months. Since his vision has improved over the past year, ever since we found the fantastic, more aggressive pediatric ophthalmologist, she wanted to align the eyes not only for cosmetic reasons, but because she says there’s a chance he could see at the same time with both eyes. Statistically, binocular vision is not likely with his past, but when she said there was a chance, of course we wanted to give it to him. The disconcerting part about this alignment surgery was that she actually went into both eyes and loosened the muscles to align them. Allowing her to go in to his good eye was up to us—she could have done the alignment just in his one eye, but that type of alignment surgery often doesn’t take as well as when it’s done with two eyes. When she showed me what she would do with her giant eyeball model in her office, and how less intrusive this surgery was than his past surgeries, I felt better. We finally decided to let her go for the surgery that statistically works much better.

He came through like a champ. The nurses said that just two minutes out of the operating room he started stirring and asking for Mom, a hug, and a popsicle, the first of which he got quickly, the third he had to wait awhile for, but did eventually get.  The doctor said the surgery went great—she looked at the retina, cornea, did a pressure test, and everything checked out well. She warned us that he’d look like he’d been punched in the eyes for a week or two. She also said that for the next few weeks his eyes would probably wander around occasionally. We were prepared for the worst, but his eyes look great. The right eye doesn’t turn in at all. His eyes are red, but not black around them, as we’d pictured. I have to put ointment in each eye twice a day, which is tries my patience and his lungs, but is not as all-consuming as the fourteen eye drops a day when he was four months old.

We also got some more great news: he doesn’t need to wear a contact anymore! His eye has been bothered by contacts over the past year—he had two serious eye infections— and so for the last year we’ve been putting the contact in every morning and taking it out every night. Before that, he could wear one for a week. As you can imagine he was happy to hear the no-contact news too.

So that’s the news on the eye-front. Great news, in fact. I’m continually amazed at how well his eye has done after we were told he’d never see and probably have to have it removed from his head. Again I say to everyone: get second opinions! Get third opinions! We’ve done both and that’s why he has his eye—a healthy eye, albeit abnormal, but a seeing eye. We thank everyone for so much support and love we’ve had with this challenge we’ve had most of his life. And thank you for your unending prayers. They’ve made a difference. Please keep them up!

For the full story of Cal's diagnosis and initial surgeries, click here.

For the story of his second second and third opinion stories, click here.

Saying goodbye to him for his first exam under anesthesia-- 3 months old

After first surgery-- 4 months old

Decorating his anesthesia mask with stickers,
and my clothes with crayons-- 3 1/2 years old

Hugging Clark before surgery

All set to go to surgery

A couple days later...still a bit puffy and red, but back to normal shenanigans

On Coming Home

When we got home from our epic road trip the beginning of last month, there was a whirlwind of activity around my sister-in-law’s wedding and our refinancing our house and just settling back in. For a few days straight the boys were running around pointing to various toys and books and household items, shrieking, “Remember this!?”  and “This is OUR house!” We had spent so many nights sleeping in different places with other people’s things that they nearly forgot we had our own place with our own things. There's nothing like coming home when you love your home.

Something else that added to the whirlwind of settling back in was that we found out I was pregnant. Surprise! We certainly hadn’t planned to get pregnant, specifically during the lapse in time between Brian’s healthcare coverage. We had purchased a basic healthcare plan in case of an emergency, but hadn’t had to use it all summer. I scheduled my first OB/Gyn appointment for as soon as I could after our new insurance kicks in— September—and tried to get used to the idea of another baby.

We told only a few people and planned out how to tell our families. It was a weird feeling—much different from my first pregnancy. I was thrown off by the news but eventually was excited about it. We went through our whole house again and got rid of things. We figured out how we can arrange a changing table and crib in our room, which included getting rid of both dressers and, you guessed it, building more shelves. We were thinking about names, reading about the baby’s weekly development, and getting used to the idea of a tiny new addition to our family.

About two weeks ago I miscarried. You always hear about people having miscarriages but I didn’t realize how long and painful it can be. It lasted about four days and though I only took two Percocet pills it was quite uncomfortable. Remember the healthcare situation I mentioned? Yeah. I ended up going into the ER on the weekend, and then had two subsequent visits to the doctor. We haven’t seen the bills, and they won’t be pretty. Odd timing on all counts. More whirlwind-y feelings.

I was sad. I wanted that baby, even though we hadn’t planned on it. I wasn’t sure I’d write about it here on my blog, that maybe it’s too personal, but I decided I would go ahead and do it. I now understand why couples don’t often tell people they’re pregnant until later on in the pregnancy. It would have been painful to have to call and tell a bunch of people what happened a few weeks after we’d just called to tell them the news. With Cal and Clark we told a couple people the news on the night I took the pregnancy test, we were so excited. Fortunately it worked out fine that time.

Anyway, coming home has been a long and weird process. We refinanced, de-cluttered, reorganized, and shampooed the carpets in our house. We were in a wedding, potty trained the boys, went on a raspberry and peach jam canning spree, had a miscarriage, and expect to be hit by a huge medical bill soon. All that at the end of our awesome road trip adventure. Crazy summer.

Just today things are seeming more normal and less vacation-y. Brian is at work (just down the road!). Alex, the little girl I watch a few days a week, was here today. She’s talking like crazy and the boys are both in love with her still (Though Cal needs to work on his bossy tone if he wants to win her over when they’re older). I’ve started giving the boys little reading lessons on weekdays and that has been fun. They’re both signed up for community center classes in a few weeks: art, swimming, and martial arts.

And so, another chapter begins. We’re home.

Clark bulks up for his martial arts class as Cal and Alexandra watch.

 

Seasons of the Soul Therapeutic Massage

I’m not much of a spa gal. I mean, I’d love to have chances for more massages and pedicures and manicures and facials and such, but I’ve always been more the girl who sometimes forgets to shower and change clothes and who probably has muddy cleats in the corner. My toenail polish is perpetually chipped and I don’t get my hair cut as frequently as you’re “supposed to.” I never have fingernails beyond the end of my fingertips and they are never polished. My massages, when I convince the Huzz to give me them, are on the floor in front of a baseball game with a tumbler of wine that will probably spill on my lap. In short, I’m not very put together, especially in harsh lighting.

But a massage does not need to be at an expensive spa, and there can be tremendous results from therapeutic massage.

Ever since my second car accident when I sprained my back, I’ve had back problems. I’ve seen numerous chiropractors and had numerous massages (ahh) that have helped greatly in some cases, and not at all in others, but I still once in awhile have back pain that makes me want to bite something really hard, and/or hook myself up to a morphine IV.

A couple months ago I got a pamphlet in the mail for Seasonsof the Soul—a massage therapist who has her new business set up close to my house. Since I want expand the local aspect of my blog, I contacted her. We ended up meeting and got along well. Marianne was amazed at the way my body healed so well after all my broken bones. When I stop to think about, I am too. I mean, I've broken eleven bones, had two bone grafts from my hip to my wrist and hip to my leg, worn a bone growth stimulator and was told I'd probably have to have bones in my ankle fused and not run again...but I do run. I'm a patchwork quilt that somehow still provides a good snuggle.

Marianne said she read and really enjoyed my blog, and we talked for a long time. I ended up tutoring her daughter who is getting ready to take the SAT and she said she wanted to give me a free massage (twist my arm, right?) as well as become a blog sponsor here.

Her office is so close to my house that any professional baseball player could throw a ball to her building from my building when the wind is right and if the building in between weren’t there. So getting there is a piece of cake—I don’t have to rely on anyone else. Just leave the Littles with the Huzz and walk over to be surrounded in relaxation for an hour.

Marianne uses heated stones in her massages, which I had never experienced before—they were smooth and warm and calming—absolutely nothing to not like about them. The lovely peaceful, aromatic ambiance of the room made me want to move in slow motion and whisper for the rest of forever. She focused on the painful areas of my back that have bothered me for years. After my hour of bliss, when I completely forgot to worry about what to make for dinner, she recommended some yoga poses that would help some of my stiffness. I floated home and it’s all kind of fuzzy now, but I think we might have ordered pizza for dinner? Or maybe the boys made themselves sandwiches while I hummed in a corner?

Since the massage I’ve been stretching every morning and have noticed that my back feels looser in general. I’m thinking I’ll have to wander over to Seasons of the Soul "accidentally" next time it hurts.

Marianne’s business is off to a great start and she's giving first time customers half off one of her massages! This is remarkably generous and the experience is something I highly recommend for anyone local—especially to relieve back pain. It’s easy to schedule a massage online with her. It’s a great gift—for yourself or a friend, or for a silly mom-writer whose blog you read…

Visit her site and schedule a half-off massage!

I Feel You Better

The boys have been playing little games that involve health and hygiene, and in general, "feeling you better," which is their take on the sentiment of helping someone feel better. 

The multi-purpose toilet/astronaut helmet

I've been trying half-heartedly to potty train them over the past couple weeks, but they still have not done any of their business in the toilet and they are still terrified to sit on it. But they love to play that they are going to the bathroom. They sit on a container we use for toys and pretend to go potty. Oddly, they use the same container upside-down as an astronaut's helmet when they play space, so that's nice. Today Clark “went potty” in the container on the couch. He waved goodbye to the potty and “flushed it away.” He then requested that I get into the "tub," and motioned to the floor next to the couch. As soon as I sat down, Cal ran to the bathroom to get the stool I sit on when I bathe them. He put the stool up next to me and washed my hair. Clark gave me toys he called bath toys and cleaned them up for me when I was ready to get out. Cal covered me in a pretend lizard towel (his bath towel) and then Clark covered me in a pretend duck towel (his bath towel). Clark pretended to change my diaper while Cal rubbed pretend lotion on his hands and put it on my face. It was quite a refreshing break.

A not-so-refreshing habit that Clark has picked up is attacking boogers in noses with wipes. Now, these are typically imaginary boogers, and the nose is mine or Brian’s or Cal’s and it hurts. He isn’t playing when he does it. He squints his eyes and scrunches his lips together and focuses in on the offending nose. It’s fantastic. So fantastic that even the stinging sensation of inhaling a wipe is worth it just for a second. I wish I had a video camera in my nose (Hmm, never said that before) to capture his intense focus. The other day he grabbed the bridge of Brian’s nose with his other hand for leverage and grunted, “Almost got it,” (relieved sigh), “There we go.”

They’ve also taken to pretending to put in and take out contacts. They first rub their hands with imaginary Purell “like Daddy does!” before they tell me to lay down so they can take my contact out. “Great job, Mommy! You held still!”

The most prevalent game is still the sick game. Often their stuffed animals and toys have inexplicable maladies that must remedied by little tiny doses of medicine with the baby spoons that they take out of the drawer by themselves or medicine droppers. They use their high little baby voices to say things like, “It’s okay, Little Ducky. You’ll be okay. I feel you better.” The injured animal always requires a kiss, medicine, or petting from Brian and me also. Lately they insist that I tell the patient, “Your mommy is coming soon.” 

An entire cast of zoo critters who need medical care via medicine droppers

Today Cal is sick and Clark has been helping "feel him better" all morning. First he wanted to sing a song to him. He sang Jump Up, a Dan Zanes' favorite, only modifying a few of the lyrics, and then said he was going to make up his own song called "Farmer's Market." It was lovely-- all about a shark eating candles. (Duh! What else would a song with that title be about?) I think it actually did helped Cal feel better because he was smiling. Later, after Cal woke up from a nap, Clark propped up his guitar and played it like an upright bass and sang another song. A Jimmy Buffet song, of course. Hopefully Clark's continued nurturing care will help feel Cal better today.

Vision News

Two weeks before Christmas we got the second best news we've ever heard concerning Cal's eye. The best news was when the specialist in Long Island told us that Cal's retina was not detached and that he could fix it. A couple weeks before that we had been told that his retina was detached, that he would never see, and that most likely his eye would die and have to be extracted, resulting in problems with his skull developing correctly as he grew. You can imagine the mercurial emotions Brian and I felt during that time. I wanted to punch the retina specialist in Washington in the face for his misdiagnosis and I wanted to make out with the one in New York.

It turned out that the doctors knew each other and the New York doctor made a call to the Washington doctor and in the end, despite my anger at him, we still see the first doctor, who has since proven to be apologetic about his mistake and awesome in general. He's actually one of the best retina guys in Washington. I again cannot stress enough the importance of getting a second opinion. Cal's PHPV is so rare that only a handful of doctors in the entire country specialize in it and the one we found in New York has done extensive research on the condition. Let me tell you, that man will get a Christmas card from here on out, and all of our referrals. He assured us that the Washington doctor's mistake was an honest one, and one many doctors would make.

Fast forward through more surgeries and contacts and patching and eye drops. In July of this year Cal's pediatric ophthalmologist tested his vision and said he couldn't see well at all and was grim about his chances of ever seeing better. She's the one who originally prescribed his contact strength when he was five months old. We weren't happy about that news and her lack of curiosity for what he actually could see, and so we saw yet another ophthalmologist in August, who found that Cal was farsighted in his good eye and he prescribed Cal's glasses. 

We saw yet another pediatric ophthalmologist simply for convenience sake because this guy didn't operate in the same hospital as our retina guy and we didn't want to have to put Cal under anesthesia twice when both investigative exams could be done at one time by two doctors. She is the wife of Cal’s retina specialist-- the guy who misdiagnosed him. She is awesome. When he was under anesthesia she found that Cal needed a much weaker contact prescription than what he had. So, two weeks before Christmas she did a vision test on Cal with the new strength. Usually they use images instead of letters to test young children's sight. She covered his good eye, turned on a screen across the room with a letter on it, and reached for the button to turn on the images instead of letters. Cal immediately blurted out, "T." She was surprised and said, "You know your letters!" Yep.

She switched screens to smaller and smaller letters and we both looked at each other in amazement as he kept saying them correctly. This screen was ten feet across the room! With his stronger prescription he couldn't see nearly that far-- it must have blurred his vision at longer distances. Of course I got goose bumps and the doctor, who knew of her husband's misdiagnosis and of Cal's amazing tale thus far, made me like her even more with her excitement. She said she couldn't wait to tell her husband and that he would be so happy to hear it. It kind of made me want to invite them both to our gingerbread party, but maybe I'll wait until next year for that.

So that's the happy update on Cal's vision. Yay!

Lookin' good. Seein' well!

Wild Rocky Red: Attack of the Wooden Horse

Last week we had another medical adventure at our house. (My seizure being the first one, two weeks ago.) As Clark was rocking out on Rocky Red, the faithful, much-loved rocking horse, and listening to Jimmy Buffet, as they both do daily, he pulled back too hard and fell over backward into the side of the recliner. Rocky Red came down hard on him, somehow right below his left eye and the cut was immediately bleeding all over the place. Cal was upset, yelling, “Clarky, Clarky, Mommy. Clarky!” and sticking his face into Clark's face to look at his cut. Now, this is urgent, brotherly sympathy is something I have seen a few times, mostly in Calvin, that just makes me want to cry, it is so sweet. I hope they always feel that way about each other. I spent more words assuring Cal that Clark would be okay than I did comforting Clark—I mostly just held him. 

I grabbed what was around—a little white sock—and put pressure on the cut and wiped up the blood, wondering how in the world I could get Clark to the emergency room if that’s what he needed. I had Baby Alex that day too, which meant the double stroller would not be enough to transport us all. Meanwhile Cal kept saying to Clark, “Clarky, wait here, I will get strawberry medicine. Be right back,” and going into the bathroom, calling me to help him, melting my heart all over again with his concern. I called my friend Aimee who happened to be already out and in line at a grocery store nearby. She rushed over with her little boy and watched Alex and Cal while I pushed Clark in the stroller to the ER. Sidenote on the awesomeness of where we live: How many people do you know who could walk to the ER faster than it takes to drive to the ER and park? Maybe only me. And also, how many people do you know who have been to the ER as many times as me? That's what I thought. Since I can’t drive, we are so blessed to live here. The day before it had poured rain, but that day it was sunny so the walk was simple. Clark was incredibly brave, in part due to the book he loves, Maisy Goes to the Hospital, but also because he visited the ER in June and got stitches in his chin. He remembered that they had turned baseball on the TV for him, and you know how much the kid loves baseball.

Clark the next day, sporting not only his cut, but one of the new surprised faces he likes to practice. Notice Rocky Red sulking dejectedly in the background.

We got in and saw a doctor right away. Clark hardly cried and all the nurses were smitten by him and all his talking. He called a lot of things cool and pretty and cute and the nurses nice. You can tell who he hears talk a lot, though I’m not sure I would have chosen those words for the sterile insides of the ER. Fortunately he didn’t need stitches, just some skin glue. A couple sizable superhero stickers later, and we were out the door and on the way home. It is amazing to have Aimee so close and so helpful and super with the kids. All things considered, this was another case of best case scenario coming from a scary situation…and both in the last two weeks. Hopefully this week will end without any disasters. 

Cal's Little Right Eye

I’ve been thinking back to two years ago when we found out that Cal had PHPV (Persistent Hyperplastic Primary Vitreous) in his right eye. Within a couple weeks' time the pediatrician said he thought it was PHPV, the ophthalmologist said Cal had probably never been able to see in that eye, and the retina specialist said that his retina was detached and that he would never see and quite possibly not only be blind in that eye, but that it would probably die and have to be extracted. It was the worst news I’ve had in my life. Even compared to my big car accident and finding out all the bones that I had broken and being in all that pain, it wasn’t as bad as this. Knowing that your son will go through life with only one eye and with the cosmetic repercussions it will doubtlessly play in his social and psychological development was a lot to digest and I’ve never felt so hopeless.

After his LONG initial surgery

Brian and I would have gladly given anything to be able to lose an eye instead of him, with his whole life ahead of him. I hated thinking that my world, the world I see, would never be exactly the world that he would see. 

But Calvin has not only his surgeon, but his father, my persistent and determined husband, to thank for his vision. Brian never gave up. When I thought we should just be resigning ourselves to his diagnosis and preparing for all it would mean to be his parents, Brian stayed up all night researching the mysterious and rare condition called PHPV and its support groups and specialists. He sent all Cal’s records up to a highly recommended doctor in Long Island, New York. The doctor called us back late on a Thursday night to tell us he saw an inconsistency between the dictation on a chart and the diagnosis. We hung on to hope and made the five hour trip up there with our two infants. 

On the way home from Long Island...eye drops in the van

As the doctor performed the sonogram Brian and I exchanged looks as he kept going over and over to look and look again at what he saw on the monitor. What he said made my heart skip a beat and pound mercilessly at the same time. Cal’s retina was not detached. Cal would see! This doctor saw the mistake the retina specialist had made and knew how to fix the eye. I stared at Cal's little face in the parking lot afterward and cried. My little boy would see and it was the happiest news I could ever imagine receiving. There was a long road ahead of us full of surgeries, eye drops, eye patching, high risks of glaucoma, contact lenses, and glasses, but we were so thankful to even have the chance to tackle them. After the nearly four-hour surgery two years ago tomorrow, we couldn’t have prayed or hoped for a better outcome. In the first surgery he had his natural lens taken out because it was mostly a mass of scar tissue. The doctor painstakingly removed all the other scar tissue he could that was binding up and essentially killing the eye. 

After his second surgery-- a minor one

Cal has had a surgery since the initial one and several exams under anesthesia. He had to remain mostly head down and on his right side for three weeks after the first surgery to allow a minor tear in the retina to heal. For a period of time we were giving him around 20 eye drops a day. We learned to put a contact lens in an infant and take it out again. We learned to patch him all waking hours except one to allow the weak eye to grow. Purposefully taking away the vision in his good eye in order to strengthen the other eye broke my heart, but we were encouraged by the fact that he could clearly see something with his weak eye. Patching hours have decreased and we now patch him from 3-4 hours per day. He is amazing about it. He doesn’t like having it put on, and always asks for a hug and kiss before we do it, but he keeps it on and takes it off by himself when we tell him he can. He loves to “smash it up and throw it in the garbage!” when his time is done. 

Happy Cal at the park last summer

We have finally found a contact lens size that fits him after losing many, many expensive lenses. We only have to put it in and take it out once a week. He still fights getting it put in but he always requests that Clark sing Head and Shoulders, Knees and Toes, as we put it in and of course wants many hugs and kisses throughout. I don’t know if he’d be so affectionate (he’s the best hugger I know) if it weren’t for his eye problems. We have frequent checkups with him and will average two exams under anesthesia per year until the threat of glaucoma is significantly less. He functions well while he’s patched. We think he can see decently up to about 12 feet away. After that he has a hard time tracking anything. 

Best friends-- the boys last fall

The doctor recently told us that he probably can’t see in both eyes at the same time because his one eye is so much more dominant. She didn’t suggest any rigorous way to try to combat that though, and since we know that a child’s eye is developing until he is 6 years old or so, we’re getting a second opinion with another doctor next month. This has been such a journey for us and for Cal. After the doctor did the initial surgery he told us that the eye was even in worse shape than he thought and that it probably would have died and had to be taken out in a few months. That would have resulted in all kinds of problems with the growth of his head as well as the cosmetic issues that come from a child with a glass eye.

Cal with a windchime this spring

We are so thankful for all the prayers and support we got from family and friends on Cal’s behalf while we were going through the worst of this. Calvin’s little right eye is a miracle and I try to thank God for his vision every day. I can’t believe it’s been two years, but I’m so glad it has and that we’ve had no real problems since then.  

Next step-- getting used to protective eye glasses