A few weeks ago, Abigail attended a science in the arts camp sponsored by the WV State Division of Culture and History. It sounds weird but the idea was to demonstrate the use of robots and animatronics in art. About 2 dozen or so kids were invited to the camp where counselors helped young mad scientists put together proximity sensors and motion detectors and wires and batteries to control servos and motors to animate whatever forms the kids wanted.
Abigail chose to build Cheshire the cat! Cheshire looked very much like the cartoon version from the movie Alice in Wonderland which makes sense I guess. I didn’t know she had ever seen the movie but it seems obvious. Anyhow, Abigail’s cat detected when we tried to pet it. It purred and wagged its tail like a good kitty. When we talked to her cat, Cheshire meowed in response.
Mad scientist
I haven’t seen the girl so on fire for technology…ever! Often girls are excluded or exclude themselves from science and technology so I am absolutely delighted that she participated in this week-long day-camp and that she says she wants to work as a robotics engineer! So, thanks WV Division of Culture and History! I think you have sparked a new interest in math and science for my daughter!
So, it’s been a rough go around our place lately. As you may know, Isaac has had a significant issue with a blood clot in his leg. It seemed like that was enough to call it a summer, but just last night, Abigail broke at least one wrist and maybe both.
We call her Splint Eastwood
We were at the local high school walking around the track with Isaac working on building a little endurance in his legs as he prepares for school to start in 3 weeks. Abigail took her scooter to ride as Emily and I walked with Isaac. She was scooting along when all of a sudden, she just sort of toppled over. It turns out, somehow, on a flat paved track, that she rode off the surface into the grass which caused her to fall. We always insist on helmets but it’s a scooter on a flat surface…we didn’t think wrist guards would be a big deal…WRONG!
Her fall was seemingly gentle so we debated a bit on whether to take her to get x-rays, but when we got home, she couldn’t move her wrists and her hands were trembling. Emily took her to an urgent care place where they x-rayed both wrists. One was clearly broken, the other was not clear. Sometime today or tomorrow, they will go to an orthopedic doc and find out for sure. So, the debate is, “one cast or two?”
She’s in pretty good spirits so the pain isn’t too bad. She’s just trying to figure out the logistics of having both arms splinted right now…pretty funny really. Anyhow, I figure, the dang devil scooter will take a ride over the hill into the weeds as soon as she is able to throw again. Wear your helmets AND your wrist guards kids!
“Mawage is wot bwings us togeder tooday. Mawage, that bwessed awangment, that dweam wifin a dweam…” – The Princess Bride
The kids sat down last night with Emily and me to watch the Princess Bride on the eve of our wedding anniversary. Nineteen years ago today Emily and I were married hoping that, “…wuv, tru wuv, will fowow you foweva…” We were young and maybe a little dumb but getting married was the best non-dumb thing I did when I was 22. And so far, wuv has followed us. We joked last night about some of the funny things that happened on our honeymoon like the worms and crows. Emily told the kids what I think is my favorite story to tell other people about our honeymoon…
Who are those youngsters?
We were engaged for 2 or so years before we got married and we had dated before that so we pretty well knew each other and mostly had a good idea that we were going to be married early on and that it was going to be ok…or so I thought. The wedding was stressful and my face was locked in a perma-smile for days but the ceremony was fun and went well. We finished up at the reception and headed off to our honeymoon destination. We were broke so there wasn’t money for anything exotic. We went to a nearby state park that had a nice lodge and stayed there. We ate and hauled our stuff to the room and basically collapsed in exhaustion. Within a few minutes, Emily started crying, “What have I gotten myself in to?” Over and over. It’s not like we were having problems or anything…reality just struck her…on our wedding night! I suspect she still doesn’t exactly know what she has gotten herself into as I like to keep her guessing but it’s worked out pretty well and the wedding apparently “took”. So happy anniversary to you Emily! I look forward to annoying you for a lot longer!
I remember watching the Newlywed Game when I was a kid. I guess it was in syndication when I saw it but we watched regularly, and I really enjoyed it for some reason. The couples were funny and spontaneous and innocent. It was a different sort of tv I guess. Anyhow, Bob Eubanks invariably asked the newlywed couple some question about their “whoopee” habits. I guess I was young and dumb but I knew what they meant but sort of didn’t either…know what I mean.?
Harlequin Beetles mating
That phrase has sort of always stuck with me as catchy phrases about sex tend to do. So, when I spied some critters “making whoopee” in my garden the other day, I decided that I had better grab a few snapshots (does anyone use that word either?) and call it a new hobby.
Get a room!
We built a raised bed and planted a lot of different things in the garden this summer. It’s somewhere around 4 ‘x 20’. I love that it is convenient and I barely have to bend over to work it. I basically planted it square-foot-garden style so I have quite a number of plants in that space. Perfect space for insect exhibitionists to show off their style!
The good thing is that the plant whoopee that’s been going on in my garden is also paying off. Insects aren’t the only things reproducing. We planted broccoli, Brussels sprouts, jalapeno and bell peppers, onions, cucumbers, zucchini and tomatoes and they are all doing great! We still have plenty of blooms on things so there is more fruit yet to come!
I am still not sure I understand what Bob Eubanks was talking about but I do know that this sort of garden whoopee is always welcome and I don’t feel the least bit bad taking pictures of the whole thing!
Several months ago we bought tickets for us and several in our family to travel to Cleveland, OH to see the Lion King, the Disney musical that plays on Broadway. Most people have heard about the production and I knew it would be cool, but it was beyond cool! The design and costuming and everything were just amazing! Of course, the production company frowns on pics so you will have to do your own googling (and you should) if you haven’t seen the costuming and sets. We were worried about traveling with Isaac but decided to give it a try and see how we did. By the smiles, I think you will agree that things are going pretty well!
At the Lion King in Cleveland, OH
It was a fun trip in addition to the musical itself. Emily’s folks road in our car and all 6 of us fit very well. We have an SUV which hauled us and our stuff comfortably. Ohio is flat so gas mileage worked out well with all of us taking one car. We stopped several times to let Isaac get out and stretch his legs often. My Mom and cousin met us there so it was a big family affair. Abigail went back to PA with my side of the family for the week. The rest of us stuck around to visit with Emily’s cousin who is a doctor in Cleveland. We had a nice time chatting with him and getting the scoop on Cleveland. It was a pretty fun time just goofing around in the hotel and reading, talking, doing nothing really.
Street performers
I don’t have much nice to say about Cleveland in general, but their theater district is pretty nice and we had great weather. That being said, I am glad that the city is a couple hundred miles away…just to be sure. As I have found several times recently, being among other people reminds me of how thankful to have the life I have…enough said.
Anyhow, if you have not seen the Lion King, it is a great show and worth your time to go and see. It’s family friendly and really pretty amazing! Timone and Pumba do not disappoint!
Isaac and I were laying around last night irritating Emily and Abigail and we turned over to SyFy! It all started off when we picked up on the last bit of “Super Shark“, a delightful tale of a Hulk-like shark that could “walk” on land and even fly. Its final demise was that it liked rock-and-roll music on the radio and ate a boom-box encased in explosives. Quality stuff. Emily and Abigail sat patiently expecting us to turn the channel or do something different. Isaac and I had laughed a lot at the cinematic brilliance of Super Shark so when the next title popped up, it was a no-brainer…literally. The next movie was called, “Sharknado“.
Yes, those are sharks in a tornado!
You might think these were old 1970s “B-movies” but no, no…they still make bad movies just like they used to. These movies were both made in the last 2-3 years. Both of them did star actors who were popular in the 1970s and 1980s so I guess there is a tie there. When I was a kid, I loved to watch the old “Godzilla attacks Japan” movies. It seems like they came on every Sunday afternoon. I am not sure they are on tv much anymore but I may have to introduce Isaac to those as well. Quality films should be enjoyed by all!
Yes, that is Tara Reid and the 90210 guy
Anyhow, Sharknado…It’s awesome! Severe weather runs up the Southern California coast spawning tornado after tornado which, somehow, only sucks up sharks and deposits them in flooded aqueducts, highways, overpasses, and…well, everywhere else. It’s a killer shark’s dream I suppose, chasing screaming people through the streets. It’s bad cliche after bad cliche but Isaac and I had an absolute ball watching. It occurs to me how weird it must be for a female. Emily and Abigail just didn’t see the humor in it and that makes me wonder two things…first, what does it take to be funny through the eyes of a female, and secondly, how do they survive if they can’t enjoy the genius that was “Sharknado”?
There may be more to it though. I ate coleslaw for breakfast along with a tall glass of lemonade and Emily thought I was weird. I don’t understand female tastes in general…neither in movies nor food. At least Emily had good taste in husbands!
Thank you so much friends, for sharing with us your thoughts, prayers and well-wishes. Isaac has come a long way since last week and we are all much relieved with where we are headed. We were discharged last Sunday from Nationwide Children’s Hospital in Columbus, OH. It was a long ride home as Isaac was still in a lot of pain and we were pretty nervous about what we were in store for.
Getting better
We saw the local hematologist on Tuesday and he upped Isaac’s warafrin and continued his lovenox shots. Lovenox shots hurt like crazy and really suck. Isaac’s mood was in pretty bad shape and his pain continued for several days. One day, I can’t remember which, a lot of his pain just went away and he was able to move about a lot better. Each day we see improvement and he can walk short distances and almost looks normal in his gait.
We have had a few more blood draws and warfarin adjustments and things appear to be leveled out. That means no more lovenox too! That fact alone changed Isaac’s mood dramatically. Over this weekend, his appetite also returned. A co-worker of mine bought Isaac a multi-pack of candy bars and he has been plowing into that pretty hard. I am not sure how many healthy calories he has ingested but we have been pretty flexible in just about everything anyhow.
We have more blood draws, probably two a week for a few weeks and then we just wait and see what happens. Isaac has gotten into a much better place emotionally which means that Emily and I have also. His pain persists but it is so much better than it was so I think he is tolerating it pretty well. We don’t yet know how school will work and whether he will be able to sit/walk all day without support so we may have to deal with crutches. We have a few weeks before we worry about that anyhow.
I don’t know whether I am conveying it well, but we are so much better off than we were last week and Isaac feels a lot closer to normal. So friends, please keep thinking of Isaac and I’ll give updates as we get them!
In the last post, I mentioned that we had a family emergency that has taken us away from normal doings the last week or so. Here’s the story: a few weeks ago, Isaac mentioned a pain in his hip that sounded very much like a muscle pull. He’s an active kid so it seemed reasonable to us and to him. He did the usual heat and ice and rest which seemed to alleviate the pain somewhat. Like most kids, he doesn’t ever really rest so we figured that it was going to take awhile to get over the problem. That seemed okay until last Tuesday night when we noticed that his pain was magnified dramatically and his entire leg began to swell. By morning, his leg had changed color and he couldn’t walk. Isaac is not a kid who ever cries or skips a chance to eat so we knew there was a problem when both happened. Wednesday morning, Emily took him to the emergency room. In Charleston, kids go to CAMC Women’s and Children’s Hospital. They were really great and took us right in.
In the emergency room
My family has a fun little disorder called Factor V Leiden. Basically, it is a disorder that occurs in around 5% of people and the end result is that carriers are significantly more likely to develop blood clots. You may have heard of problems related to blood clots including pulmonary embolism, deep vein thrombosis, and “holy-crap-that-hurts-more-than-eating-glass”. My Dad and I both have tested positive for the issue so more than likely, Isaac has the issue too.
Nationwide Children’s Hospital’s Mobile ICU
So, at the hospital, we related our history and experience with clots and they, of course, suspected a clot as well. Unfortunately, they did not have expertise and/or equipment at CAMC W&C Hospital to do a proper clot-identifying ultrasound. Isaac and I rode in an ambulance from W&C to CAMC Memorial Hospital. The rad tech scanned his leg and then scanned more and more and finally, up into his belly. I knew we were into something big when she did that. The ambulance took us back to Women’s and Children’s where they confirmed that Isaac had a clot that ran, roughly, from under his rib cage to his feet.
IV Meds…this was something to watch!
Clots in general can be life threatening and clots of this size are definitely not common. The doctors at W&C Hospital were honest about the gravity of the situation and that they had limited capability to treat all of the potential issues that we could be facing. After a few calls, we settled on a transfer to Nationwide Children’s Hospital in Columbus, OH. The weather was bad so an air lift was not an option. The risk of transport was high and the possibility of a pulmonary embolism was real. Nationwide has a mobile ICU ambulance which is equipped for just about any sort of medical emergency so it was dispatched to Charleston. The crew left OH around 10 pm Wednesday and we were on board the ambulance and back on the road for Columbus at 1:30 am Thursday morning. Emily rode with Isaac and I drove separately. We arrived around 4:30 am where we were immediately admitted.
Nationwide Children’s Hospital
I didn’t realize, but in pediatrics, hematology and oncology go together so we were given a room on the “hem-onc” ward. Nationwide is set up brilliantly to make family and patients comfortable and together. Anyhow, we were taken to the interventional radiology department where surgeons placed a catheter into Isaac’s vein in his leg, directly into the clot. Through the “pipe”, they delivered tPA, the clot busting drug given to stroke patients. The idea was to break up the clot, give Isaac blood thinners and get him back to being well. In normal cases, that’s pretty much how it would go. Of course, we didn’t fall into that category.
The vein in his left leg…it should be straight so even the bumps suggest clotting/damage
The surgeons discovered that Isaac doesn’t have an inferior vena cava, the large vein that returns blood from the legs to the heart. Typically, each leg has a large vein that joins somewhere around the belly button creating the inferior vena cava. It is likely that he once had one, but sometime, probably during the trauma that was his birth, it was blocked and/or died. Fortunately, he survived that episode and his body was able to form collateral veins which returned blood back to the heart in spite of the missing IVC. Those collateral veins, of course, are not the way one is supposed to be plumbed so, while effective, they are not as good as a healthy IVC at returning blood to the heart. Couple the Factor V and the missing IVC and we have a serious issue waiting to happen. No one could believe that Isaac has not had any issues prior to this one.
The vein in his right leg. This should be a straight shot. Instead he has many collateral veins…and a many clots
So, the clot buster usually works similar to a small rupture in a dam. Once a hole is poked in a dam, the rushing water opens the hole wider and wider. In a normal anatomy, the tPA works the same way. However, without an IVC, there is no rushing water to open the pipes. As soon as the surgeons removed the catheter, the clot simply reformed. Surgically there is no real solution, at least not anything worth the risk. The only course, then, is to manage the clotting and allow the body to heal itself by creating more collateral veins and isolating the clotted area. We are now on that path. Isaac is on blood thinners and pain meds but still cannot walk by himself. In time, the doctors believe that his body will heal to some level of normal but this is a life changing event for him. Not only has more damage been done to his veins that were already weakened by the missing IVC, but now he is also on blood thinners. He should be able to walk normally again but running will depend on how the healing goes. He is currently nauseous from pain and unable to manage much of anything independently. We have expectations that the pain will subside in a few weeks so we just need to let time pass and his body heal.
Another view of the clots/veins as the inject the dye
I have only the greatest respect and appreciation for the doctors and staff, both in Charleston and at Nationwide Children’s. They were fantastic and so kind and helpful. It’s a weird thing though, as a parent, when you take your child to a hospital and you get news that not much can be done to just fix the problem. We are so used to going to the doctor with a sore throat or even a broken arm. A few meds and a stitch or two and things are back to normal and everything is ok. When that doesn’t happen, it is the weirdest sense of helplessness, and a feeling that I haven’t experienced since Isaac’s birth. It’s a hard place to be in where your tough son is crying in pain and there isn’t a lot to be done. We feel good about where we are headed but the road there is a tough and dangerous one. As I consider the last week though, I saw all around me children with pediatric cancers on the hem-onc ward. Though this is still a scary time for us all, I still feel very fortunate when I consider what other families are going though. Hug your children tight…
I have had this written for quite awhile now but we have had a family emergency. I’ll write more about it soon. So this is a little out of date but I hope you enjoy anyhow…
So awhile back was the sesquicentennial celebration of WV statehood. There was lots going on and there are all sorts of places to check out details but we got a few cool pics of things that went on. Truly, WV went first class on the celebration and made for some really cool memories. On Friday night, Abigail and I went to the Capitol lawn and sat upon a blanket for an hour and a half to see the widely touted 3-D movie and fireworks show. It was to run 3 nights and from where we live, I could see the fireworks and hear the music from the first night. After hearing reviews, we decided to go for the second showing and I am so glad we did!
So Abigail and I went early and sat on our blanket. We spent some time talking and some time reading and mostly hunting for lightning bugs and people wearing inappropriate clothing. It was a ton of fun and we had good neighbors. Too many people showed up minutes before the show so it got pretty crowded eventually but we didn’t have too much trouble. Anyhow, back to the show…there was a really cool countdown projected onto the Capitol which was fun since everybody counted down for the real show. The movie was brilliant. The folks that created it used the architecture of the building beautifully and it highlighted all sorts of important events in WV state history. We saw images of settlers and the Civil War and mountain musicians and white water rafting. We saw Mary Lou Retton and the late Senator Robert Byrd. It was just super well done and demonstrated so many of the things about which we should be proud!
The producers played music throughout of course but I think the best part was when the played Country Roads by John Denver. It’s unofficially the state song and whenever it is played, everyone within earshot sings along proudly. The crowd served it up well and reminded me once again the the entire state of West Virginia is just one big small town. It was Country Roads that I could hear playing from my house the night prior to our attendance that let me know for sure that this was going to be a first class show!
Click for a video I took
We had a little bit of traffic to suffer through but I know all of the not-interstate roads to get home so it wasn’t too bad for us. People were courteous as you would expect in our big small town. I am super proud of the state I call home and of the party that we threw. I am glad Abigail and I got to enjoy the party together too!
