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

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!

First Glasses Day

Today Cal started wearing glasses. A week ago we had yet another second opinion from another ophthalmologist because we weren't happy with the apathy our initial one was showing in regard to helping strengthen Cal’s vision as much as possible and showing any curiosity about what he can see rather than settling for knowing what he can’t see. So when we saw the new doctor we had the mixed blessing of finding out that he is far-sighted in his good eye and needs glasses to correct it. The silver lining to that news is that wearing glasses to fix the farsightedness could straighten out his eyes so he might not have to have an alignment surgery when he’s older. We are glad we took him in again. Second opinions, folks. Get them! Cal picked out frames that were black and thick because he said “Uncle A!” when he saw them. It turned out that the black ones were too big for him, but the brown ones that looked vaguely Uncle A-ish were his size. So we ordered them.

Cal's glasses and band

Then the other day Cal’s bad eye seemed to be either having an allergic reaction or be infected. We took his contact out and expected it to clear up. When it didn't clear up overnight we both feared that it might be the sign of something related to the pressure in the eye, which led us to think glaucoma. He has been at high risk for glaucoma since his first surgery. Yesterday his retina specialist found a scratch on his cornea, presumably from something on his contact lens. With some antibiotic drops today, the eye has cleared up nicely. Next week he will have an EUA (exam under anesthesia) for routine measuring and pressure checking, but also to see if his contact lens strength needs to increase or decrease and to get a prescription for a progressive lens in addition to his contact on that right eye. Now is the time that his eyes are developing so we want to do all we possibly can to strengthen them. Once he hits nine or so the eyes will be done developing. We also found out that he needs to be patched more than he has been. Six hours a day while wearing glasses. Anything we can do to get this little guy the best possible vision is what we'll continue to do.

 Before we started this first day of glasses I looked up some helpful articles on getting toddlers to wear glasses and our day has been much better than I thought it would be based on his shrieking last night when we tried them on. We got a sports strap from a sporting goods store and this morning I made a stickers chart for motivation. Every time he wears his glasses for one “thing” he gets a sticker and he earns a sticker for Clark. I figured this might provide a little peer pressure for him to wear the glasses too. 

He kept his glasses on A L L through breakfast!

...and through watching home videos after breakfast

The chart has worked way better than I expected it would. First he wore them for a session of two Jimmy Buffet songs while riding the rocking horse. Then he wore them all through breakfast, during six stories, etc. He clearly can see better with them on. I put a bunch of children’s books about kids getting glasses on hold at the library and we looked at a photo gallery of a bunch of toddlers wearing glasses. Because of the eye infection we won’t start patching again for week or so. That gives him awhile to adjust to the glasses before he has to deal with both. What a trooper he is. Great first glasses day!

Playing music on Gammy's iPad

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