Home and Happiness
Our life is never boring. 2017 was truly one of our best years yet but also not unlike years’ past. Stressful but successful.
We got to build our dream house which will be accessible for the kids’ needs (in a modern farmhouse style with shiplap and barn doors and reclaimed beams, oh my!) and that will be done just as the year closes out. Hopefully we will move the first week of January, despite not having a buyer for our current home! (Knocking on reclaimed wood!)
Another notable happening was Ben turning a thriving TEN…a feat we were told may never happen.
Kelsey made great strides as well and went from not talking in 2016 to never being quiet in 2017. She has learned so much and mended our broken hearts with more joy than we could have imagined, just two years ago.
We took trips, made memories with family and new and old friends alike, and enjoyed a period of relative calmness in our “special” lives.
But the end of 2017 also finished with some difficulties that I haven’t written about yet. As the holidays approach, I wanted to tell you, my dear readers, friends and family what’s been happening and what it means for us in 2018. We are anxiously awaiting gathering for festive celebrations but before they happen, I wanted to share more about the elephant in our room. I know the questions will come up and quite frankly, I plan on focusing on the joy of Christmas not what lies ahead in 2018. You’ve been warned. 😉 XO
On September 7, on the third day of school, Kelsey had a tonic-clonic seizure that required an emergency call, ambulance ride and two hospital visits. Then, on November 26, just like in September, I went to wake Kelsey up and found her seizing in bed again.
Before that time in September, Kelsey’s form of epilepsy, which I wrote about here, had been controlled by a very low dose of Topamax. She never had another spasm like we had seen when she was first diagnosed in 2015, and it seemed like she had a mild form of epilepsy that was easily controlled by that low dose. In fact, we had just been to her neurologist a couple days before that seizure in September and after an EEG, it was decided to keep her on that low dose as it was controlling some “irritation,” but not full seizures, in the brain. But, the seizures came like they never did before.
So. The new seizures. THEY. ARE. AWFUL. Both times I have found Kelsey in her bed convulsing. Her arms are stretched out in front of her, her eyes aren’t focused, she snorting and has labored breathing. She is unresponsive. She is stiff as a board. It’s exactly as you would imagine a terrifying seizure to be. Just like on TV.
After the September incident, her Topamax dose was doubled and we were given Diazepam to give to her if this type of seizure happened again. We sent the medication to school, I have one in my purse, and there’s one in her closet. Just in case. We were prepared but honestly, naively, I didn’t think it would happen again. (You’d think I’d have learned a thing or two with these kids). But it did happen. And it was just as bad as the first time. Actually it may have been worse because we gave her the Diazepam but it didn’t work. After we gave the medicine, the seizures continued…at home…in the ambulance even after the EMT gave another dose…and even a little while in the hospital. It was probably over an hour from start to finish, as far as we are aware. An hour long seizure, people.
It has never really been proven why she’s having the seizures but both times she has had a fever and it’s assumed that the spike in fever causes her already delicate brain to seize. She goes to bed healthy and in the morning is seizing with a fever. The last one developed into a virus which turned into a sinus infection that she is still being treated for at this point.
After the November episode, Kelsey was admitted to Hopkins for overnight monitoring. Because Kelsey has epilepsy and hydrocephalus, tests are done to make sure that the shunt she has to control her hydrocephalus isn’t infected or malfunctioning which could cause the fever. To investigate this, a “shunt series” is run which involves an C-T Scan and an X-ray to see both in her brain and her stomach. Her shunt tubing runs from her head to her belly. Both visits to the hospital showed that her shunt was functioning perfectly well. In fact, she isn’t really using her shunt. She’s moving all fluid through her brain like those without hydrocephalus. She just so happens to still have the hardware in her brain (they won’t remove it unless they have to).
Hips and Hospital
Well, just as we were getting settled in for an unplanned overnight at the hospital, one of the pediatricians came in to tell me (of course Dave had just headed home) that after further evaluation of the X-rays that were taken, they noticed that Kelsey’s hip had dislocated! Insanity. Well, long story short the rigid movements of her body during the prolonged seizure caused her hip that was already slightly rotated out of it’s place (hence her walker), to dislocate completely. But, after a 4:55 AM subsequent X-ray they could tell it had, apparently, rotated back into it’s place. Good grief! And Praise the Lord. I guess since her hip was already rotated out and her muscles around it are lax, she didn’t feel any pain from the dislocation which is why we didn’t really notice anything.
So. We went home the next day with another increase in Topamax and a billion more grey hairs. And also with instructions to visit her orthopedist in a week’s time.
We have been seeing Dr. Ranjit Varghese, the medical director at the Ortho-Cerebral Palsy Program at Kennedy Krieger for a couple of years now. He was the “third opinion” we sought out for Kelsey’s issues. An opinion we looked for to confirm or deny the fact that she would, one-day, have to have major hip surgery. For years, Kelsey’s hips have been slowly rotating out of their socket or subluxated. A couple weeks before the last tonic-clonic seizure, Dr. Varghese reassured me that we had time…that while her hips had moved since her last visit, they were still okay. Surgery was not something we needed to worry about yet. It would probably not happen until she grew more and was about 7 or 8 years old.
But, that last seizure changed things in more ways than one. The new plan is that on January 22, Kelsey will have major hip surgery on both hips and legs. If you want to look into it more (Mom!), she will have a combination of a femoral osteotomy and pelvic osteotomy with a side helping of tendon lengthening. At least that is as far as I can translate what our doctor told us with what I’ve found through Mama Google. Bottom line is this…
- Kelsey will have invasive surgery that will have us as residents at Hotel Hopkins for about a week. The goal of the surgery is to prevent her hip from fully dislocating which could be catastrophic (the doc’s words not mine). Hopefully it will allow her to walk better as well.
- She will be casted from the waist down in some form which will require an immobilization wedge to keep her still for six weeks at home.
- She will leave the hospital with a wheelchair for mobility. Good thing we built that accessible home for her, huh?
- Here’s been the kicker for me in hearing the news: After the six weeks at home, she will head to Kennedy Krieger’s Inpatient Rehabilitation Hospital where she will receive therapy for six hours a day, six days a week. She will have to stay overnight there for the therapy for 3-4 weeks, baring all goes well. 😦 The goal will to get her moving with her walker as she is now, but with straighter legs.
- When we return home, she will resume regular physical therapy but increased to 3 times a week.
- The whole process should last about 6 months.
It has taken us a couple weeks to fully process the news. In fact, we are still processing it, as you can imagine. Oddly enough the logistics and home upheaval are what I’m dreading the most, not the surgery itself. And there are a lot of unknowns about pain, healing, bathing, toileting, moving, and living during all of this.
Kelsey won’t get to go to school for a big chunk of the winter and spring. And she LOVES school. Three weeks after moving into the home we’ve been planning, building and dreaming about for over a year, our life will be turned upside down…no time to refinish furniture or organize my office like I was planning. That month in rehab will mean a month of the four of us sleeping under different roofs. Dinners apart. Morning rushes apart. Holidays and school breaks apart. Kelsey will be in the hospital over spring break and Easter weekend. She can leave for a couple hours to have her ham and deviled eggs, but that’s about it.
We have spoken to a representative at KKI and have planned a tour. I’ve done some research and You-Tubing (watch another 4 year old’s journey here) which have helped. And through focusing on what I’ve learned about surviving and loving our life, I’ve tried to focus on any sliver of silver linings I can.
Obviously, the fact that her hip didn’t dislocate permanently, and that the surgery will keep it from happening while helping her walk better is a silver lining, but I’ve found more too. Our new house will be ready just in time to move, set up, and have everything on one floor with ramp access when she comes home. We have a hospital that people travel all over the world to get to for this same surgery in our backyard. Some families would be separated much more than us, but we are close enough to see each other almost everyday and to be able to make it to Mom-Mom’s for our Easter dinner.
A big silver lining is that I don’t work outside the home and can be a full-time care-giver for my girl without worrying about taking time off, writing sub plans or not meeting my responsibilities. She is my job and I have time for this.
After research on what rehab will look like, I can see how maybe, in Kelsey’s warped sense of what fun is, she might actually like some of the therapy she’ll endure…like one of her biggest joys, “the pool!” Apparently KKI’s aquatic therapy is state of the art!
As I research the surgery, talk, write and pray about it, I feel better. But it’s definitely work to focus on joy during such a scary future. We are so not-normal. I’ve definitely found acceptance with the path my sweet family is on, but this is what I dreaded most when we were told about Kelsey’s hydrocephalus and stroke before she was born. Deformity. Wheelchairs. Surgery. Hospitals. Most of 2017 gave us a break from drama, trauma and feeling abnormal. Yeah Kelsey uses a walker and is delayed. Yes, Ben’s future is unknown and he has to work twice as hard to do half as well as his peers, but we’ve got this. We know how to handle this beautiful, atypical life. This surgery, however, has snapped me back into our reality and made me once-again grieve the dream of healthy children. But one look at these beauties and I’m okay again. We are so different. We are so blessed.
So there it is. Our roller coaster. Major, invasive surgery and a dream home to come home to. So stressful, but equally successful.
Merry Christmas and Happy New Year! May you find light and joy all year long, despite any darkness that falls your way.