Instant friend, just add Nerf guns

 It was appointment day and Youngest dillydallied leaving the hospital. He wanted to say hi to his physical therapist down the hall and he wanted a drink of water and I was pretend sighing at him to hurry up. That was the day we met J. 

We met when his wheelchair nearly collided with ours. I chuckled while his parents scolded and apologized. J was leaving with a petrie cast. I poked Youngest and said, "Hey, you had one like that!" J launched into telling us he had Perthes Disease and just like that the two boys were fast friends. While the kids got to know each other I got to talk with other Perthes parents. We talked about school and wheelchairs and braces and how hard it is to tell an active kid to stop. I felt an instant connection to the parents while the kids were discussing their own instant connection. 

We exchanged phone numbers and met at the park. When we got together again at their house the boys had an intense Nerf gun battle while the moms sat and chatted. There was a three year age difference between them but the way they got on with each other you would never have guessed it. I've had countless requests of "When will we see J again? Can you call his mom?"

J was one of those people who never met a stranger. His smile and laugh were contagious. One day while out with my family we ran into their family. Once again the kids played and the adults chatted. When it was time to part ways J begged both sets of parents for Youngest to come home with them and stay the night. We hadn't talked about it in advance so I gave the typical parent hesitation. I didn't want my kid to impose if they had other plans. I didn't know how their family felt about sleepovers. His mom gave the same hesitation. J promptly told us that it was the same as having his cousins come for a sleepover and that Youngest was like his cousin. We ended by promising for parents to connect to plan out a time rather than something spontaneous.

That is a promise that was broken. Youngest would remind me and I would say I'd call J's mom and then would get busy with life and forget. Last week in a tragic turn of events J's life ended. I wish I'd called every singe time Youngest asked me to. I wish we would have made those sleepover plans. I wish I hadn't assumed there would be more time just because they were young. 

Today was his funeral. I've attended the funerals of too many children. It never gets easier, and it shouldn't. I think it actually gets harder with each funeral. He was a beautiful soul. He made the world a better place in his few years here. Hug your kids. Tell them how much you love them. Call your loved ones. Buy the potato salad. Make the chili. Show up to the functions. Be fully present. Because we aren't promised tomorrow.

When my time comes I hope I've made the kind of impact J did, that the memories of me are beautiful and comforting to those I leave behind.  

 

I'm thinking about....

 I'm not a morning person. But there is something satisfying about being awake with my coffee and computer when the house is quiet. I don't love remote learning but I am enjoying being able to drop my daughter off at work and not have to jump straight into the hustle and bustle of a school day. 

Maybe I'm more contemplative because it actually feels like fall today. It will feel like winter by the end of the day but right now it is chilly and drizzly and feels like fall. I'm thinking of things like how Hubby has shown up for over 20 years. I'm so very grateful for the way he takes care of my heart. It isn't always easy, we sometimes drive each other crazy, but we keep choosing each other day in and day out. A friend recently said the secret to her long marriage was being willing to go through the shit together and honestly I could not say it better. 

I'm thinking of my kids nearing adulthood. I talked with a friend recently and we discussed how as our kids are getting older what level of input we have as opposed to being able to make their decisions. Funny, as I typed that I realized I've had that conversation with a couple of friends recently. I'm thinking about what it will look like when my kids launch and I no longer have the daily hugs and comments of "you're the best mom ever." Sometimes I look back and wonder what things we did as parents that our kids will tell their spouses. What things will they look back with fondness and what things will they say, "Wow, my parents really blew it with that one."  We all have those moments of nostalgia or hindsight and I wonder what they will look like for my kids.

I'm thinking of the woman next door. She raised the man I love. She once told me she always wanted another daughter and that she is so grateful she got the other daughter in me. I seriously won the in-law lottery. My mother-in-law is a strong, fierce woman and I hope to be even half the woman she is. She has been such a beautiful example of allowing someone else to capture first place in your child's heart. I hope my kids have mother in laws like her. I also hope I have learned from her enough to be that mother in law to my kids in law.

I'm thinking about the job posting I saw this morning for the exact job I want. And I'm wondering how to make it work as full time with kids who have physical therapy during the regular work week. I have worked part time for several years and have scheduled kid appointments around my work schedule. I know plenty of people who work full time and make it work. I think I still get nervous about needing to take time off because of Perthes. He will need at least one more surgery and possibly two. That makes me feel overwhelmed about which job I take.

I'm thinking about politics and religion. Absolutely not writing about those thoughts right now. But definitely thinking about them. 

I'm thinking about the beach and how much I missed going this year. I am so ready for next summer and for the pandemic to be over and for camp to happen. I am so ready to dig my toes into the sand and watch the waves while I journal. I'm afraid of the ocean but I love the beach. It is my serenity place and I long to go back.

Post Op Update

My husband says write. He says people need to hear my voice. Maybe he's right but we have had so much happen that I don't know what to say or where to start. I guess I could write a book about Perthes, about our third summer of surgery but no one wants a book for a blog post so I'll try to write and keep it abbreviated.

Surgery was July 3. We tried to cram as much fun as possible into the weeks leading up to surgery. We went swimming a few times. We had another middle finger Perthes party with cake and water balloons. We went to the movies and the museum. Our extended family decided to have the fourth of July picnic early so Littlest (and the rest of us) didn't have to miss out.

The weeks leading up to surgery were painful for my boy. He couldn't sleep. He had multiple nights that he was falling asleep as we were waking up. He had multiple nights of waking up from pain. He had multiple nights of crying himself to sleep. Those nights of extreme pain destroy a mama's heart. By the time surgery happened, we were all ready for some relief.

There were two facets of surgery. First reshaping the femoral head and then a pelvic osteotomy. We were prepared ahead of time that there was a possibility of needing to do the procedures separately. Two surgeries possible and we wouldn't know until they began surgery if he would need one or two. That raised our stress level significantly. As the time allotted for surgery starting coming near, the waiting got harder. Finally the nurse called to tell us that they had finished the first part and were going to move on to the second part. One surgery!

We are extremely grateful for one surgery but it came with a price. Our boy was in surgery for eight and a half hours. It was exhausting. He woke up from surgery with a very angry sciatic nerve. The doctors said it is common with the length and type of surgery that Littlest had. He is still dealing with nerve pain. They said it can take some time for the nerve to fully wake up and calm down.

Our boy is in a spica cast. He has decided that last year's petrie cast was easier than this year's spica. Last year though both legs were in casts, he could still sit up all the way. He also was allowed to bear weight last year and not this year. The cast is heavy and hard to maneuver. The upside is he's just over half way through the time in the cast.

Still he smiles. Still we laugh. Some days are discouraging. Some days we know we'll make it through. He's the strongest person I know. He faces painful recovery head on and smiling more often than not. He's my hero.

Middle finger Perthes party
cake courtesy of my dear friend Robin at Cakes from the HART

Daddy and the boy chilling in pre-op

spica cast

Root Beer the monkey has been his comfort through every surgery

field trip at the hospital

Hospital date night. The fabulous uncle stayed in the room with Littlest so we could go outside for a half hour

Hubby brought me dinner that wasn't cooked in the hospital. We can make anywhere a date!

2 weeks earlier Gramps wore a clown nose at the hospital
Littlest wanted to do the same
clowning around  in the hospital runs in the family

discharge and heading home

here we go again...

Many times I thought I would write some how to advice of how we managed having Littlest in a Petrie cast last year. I thought I would post pictures of how we modified clothes and how he managed to get in and out of the car with both legs cast. And then I thought I'd post updates like when he got the cast off finally and when he was in the brace. I'd think of things I'd like to say but wouldn't blog about them because I wanted the congruent timeline of events to be perfect. So for the last 10 months I've just stayed silent.

I can't wait and hope for my perfect timeline anymore. I need to write. In mid-April his pain started escalating again. This time we were prepared for it. The surgeon had told us it would happen and that we would do nothing until doing nothing was no longer an option. When day after day the pain level stayed high we knew it was time to bump up our doctor visit from August to immediately. New x-rays show his hip getting worse again and our surgeon had reached the end of her ability to help him. I'm not exactly sad about this; the surgeon we have had for the past year is a good doctor but not a hip specialist and doesn't have the warmest bedside manner for working with kids. Even so, it is difficult to hear that your son's condition is beyond the ability of his doctor.

The new surgeon team she referred us to took even more x-rays with some added angles. The short version is that my boy needs surgery yet again. The new team spent nearly two hours with us explaining everything they saw and the procedures they would like to do. It is major. Instead of focusing on the femur as they have in the past they will reorient the pelvis to cover the femoral head and possibly need to reshape the femoral head to fit in the hip socket. The positive in this is we really like the new team and we trust them. They were great with our boy and great with us. They appreciated and applauded the fact that I insist that Littlest be part of all discussions because it is his body and his healthcare. Yes, mom and dad make the decisions now but he needs to know how to advocate for himself and how to navigate the medical world as he grows. Someday he will need to do this on his own and I plan on giving him as much of a head start in that department as I can.

We don't have a surgery date yet. MRI is in a couple of weeks, pre-op is in early June, and then surgery as soon as they can arrange it in the schedule, probably late June to early July. Even though we knew at the last procedure that another was likely it is still difficult to hear out loud. We had so hoped to have a summer of fun not another summer of surgery. When the last visit had the results of "no change, see you in six months" we thought we had managed to at least have a summer without medical issues. But Perthes is a terrible disease and has not proven to be predicable in the least. 

I've had a hard time with this. I've told some people but I haven't wanted to tell everyone. I've wanted to hold the news close. At first diagnosis when friends would ask how they could help I knew, I had answers. Now as we approach the forth surgery, I no longer know what to say when asked. Four surgeries in three years, I feel like I should be a pro at this but I'm not. I feel like I should know what to say when friends want to help. Early on I felt like this was a fast easy journey. We have said often that in the beginning we understood Perthes more like an injury than a disease. We thought surgery would be one and done. Now three years later still facing the same things, I feel like a burden. I feel like my constant narrative of having a kid who hurts so much he cries himself to sleep and wakes in the night is difficult for my friends to still be hearing. I'm probably wrong about that but it is still my current perception.  

My Littlest is frustrated. He's hurting to the extreme. Hubby and I would do anything to take his pain away but we are helpless to make a significant difference. Brothers are stressed out about this. Sometimes average playing results in someone bumping the leg and tears. Yet somehow in the midst of it all we still laugh, we still play, we still love, we still hope. We hope that this will be the surgery that will bring relief. We hope that soon this will be a memory instead of a current reality. We hope for a cure for Perthes so that other kids can avoid the pain that our son lives with constantly. Did I mention that we hope this is the last surgery and after this he can go about the business of being a little boy?

Middle Finger Perthes

There are days that watching my boy in all that he goes through that I feel awed at his strength and his joy. There are also days that I watch my boy struggle and I cry after the kids are asleep. Some days are bright, we know we all have each other and that we will make it through this. Some days are life draining and discouraging. On one such discouraging day, with all the kids in bed, Hubby poured drinks and the two of us toasted an expletive. Because some days only a swear word is strong enough to express how much you hate watching your child suffer. That toast is the back story for this post.

Littlest is very conscious of others. He doesn't want his disease to be a burden for anyone else. He's also a huge people pleaser and a genuine optimist. When you put those things all together you have a recipe for a little boy who says he's good all the time even when he's not. One day the dam finally broke. Tears of frustration ran down his face after we had to call him in because of his leg. While Hubby held him and we exchanged looks of "How do we help him with this?" I thought of the toast and blurted out my suggestion.

"Repeat after me. And if you tell anyone I'M the one who said this, I'll deny it. Okay? Okay. Now say this, 'Middle Finger Perthes'."  My boy stared at me and the look on his face said that his mother had finally gone off her rocker. I said it again and asked him to repeat it. Finally he did and ended the night laughing. We told him that it is okay to be frustrated and even angry. And then we told him what we always say when things get hard, acknowledge it and feel it but don't unpack and live there. 

Let me clarify, we don't advocate children swearing. He's not allowed to say the actual word. He's not allowed to do the action. But on days when he needs to acknowledge that he's angry with the disease, he is allowed to say (in our home with our family only) "middle finger perthes." Yes, it is unconventional parenting but it works for us. This is how we are acknowledging the anger of a disease that causes a child chronic pain. We just don't unpack and live there. We aren't constantly angry but we do allow ourselves to feel the anger when it comes up. 

Somehow the idea came up to have a middle finger perthes party. We decided to have cake. And of course a pinata, because beating a paper mache creature with a bat and then having candy would somehow be therapeutic. We were right, it was. Littlest, his brothers, his parents, and one of his uncles went to the park and had a party last week. Pictures at this point tell the story better than words.

 If you are the toasting type and you decide to toast tonight, we'll join you with a middle finger perthes toast. Cheers.

hanging the pinata

laughing that dad moved the pinata up right as he swung

Middlest hitting pinata

Oldest taking a swing as well

Even the parents and Uncle took a turn

candy, glow, bracelets, and....

party poppers

after all was done, he wanted to annihilate the pinata a little more

Took some vicious swings at the remainder of the pinata

chillin in the circle

what's a party without an awesome cake?
Glad I personally know the baker, it could have
 been an awkward order otherwise! 

The Monkey Man eating the monkey face

silly faces of a Middle Finger Perthes party

One flying a kite and one dabbing....love those crazy boys!

proof I was actually there as well

Legg-Calve Perthes Disease Pending Surgery

I've had a lot of questions about Littlest and his upcoming surgery. I've answered them as they have come but I've had a hard time getting ahead of the questions this time. Emotionally this has been the hardest of the three surgeries to prepare for and some days have just downright stunk. It finally feels like the time to write about it. Questions don't bother me so if I miss one of yours, feel free to ask.

Littlest was diagnosed two years ago with Legg-Calve Perthes Disease, or Perthes for short. It is a condition that interrupts blood flow to the ball of the femur causing in his case nearly complete loss of the femoral head. Though Perthes is not life threatening, it is life altering and very painful. His, as our new surgeon reminds me regularly, was very advanced at the time of diagnosis and he was over the age of six. Either of those factors make recovery more difficult and he had BOTH. 

In April we went for our regularly scheduled check up and x-ray and the doctor showed us how the bone has stopped growing properly. His femur sits inside the hip incorrectly and is causing him a lot of pain and limited range of motion. She recommended another surgery. We sent the x-rays and recommended treatment plan to our former surgeon, a Perthes specialist and an amazing man, who confirmed our new doctor's assessment and treatment plan.

This paragraph is for those of you who ask for details, if you're squeamish feel free to skip ahead to the next paragraph. In the surgery, the doctor will release the abductor tendons in his groin which will hopefully allow her to push his leg into the hip socket. If cutting those tendons do not give her the range of motion to get the femur back in the hip socket, she will also cut into the hip capsule. The goal is to maneuver his leg to the position it needs to stay in.

When the surgery is done he will be put in a petrie cast (both legs, thigh to ankle with a bar in between) for a minimum of six weeks. Depending on the range of motion the doctor can get he may be in the same cast the entire time or they may need to recast him widening the legs each time. Once he is out of the cast he will be in a leg brace for at least four months.

picture of petrie cast used from www.bcchildrens.ca

He will be allowed to be weight bearing which he wasn't after the first surgery. Although he will be able to stand and walk as needed, he will spend much of his time in a wheelchair again and will once again start school in a wheelchair. I love our new school, they are already preparing for his needs at the beginning of the school year. 

I've been asked several times what makes this surgery more difficult than the others. I think partly we have more time to think about it. At the original time of diagnosis, his disease was so far advanced that surgery was scheduled just over a week later. We didn't have time to prepare, we just had to act. It is amazing the strength one has in an emergency situation. The wear of doing life while waiting is much harder than relying on the adrenaline of the emergency.

The biggest reason this is harder though is we were supposed to be done with childhood surgeries. This summer was supposed to be the finish line. Last year his former surgeon told him he could play soccer this year and rather than playing sports and running around, he's in constant pain and facing another surgery. The active stage of Perthes is 2-4 years, this is the two year mark and it feels defeating to still be in this much pain.

For the logistics, surgery is July 28. We are working on getting our house prepared. The younger boys currently share a room and we are moving Middlest to his own room. It is good, it will give them both the space they need, AND it is a ton of work! In the next two weeks we will have a wheelchair ramp built, something we should have done the first time around and now we know. Grandma is helping sew "breakaway" clothes to fit over the cast. He obviously cannot go commando for six weeks! 

I'll update more later. I'll tell you more about how we are all feeling but for now I just wanted to answer all the questions that have been floating around. Love to each of you. We appreciate all the prayers and well wishes that have been sent our way.

Perthes update

I've mentally started this post at least 20 times but haven't actually written it. I think there is just so much to say that I don't know what to say. In June 2014 my littlest was diagnosed with Legg-Calve Perthes disease. Yeah, I know you have no idea what that is. Most people don't. Quite honestly, I wish I didn't need to know what it is. But that said, I have become fluent in the speech of the disease over the past year and a half.  Quick overview....blood flow to the femur becomes interrupted which caused, in our case, a complete deterioration of the femoral head. Surgery, wheelchair, physical therapy, and a lot of high strung craziness ensued.

In October we started noticing him limping more, subconsciously guarding his leg, and hurting at night if we had spent much time walking during the day. Just before Thanksgiving his pain had escalated so severely that we ended up in the ER for pain management. Xray, labs, narcotic drugs, nothing gave us answers and nothing helped the pain. A nurse told me it was just a perthes flare up. She expected that I knew about them and that they can last up to five days. Ummmm, nope. Up to this point, flare ups were a day or maybe two.

The uncontrolled pain lasted the full five days and then miraculously went away. Four days he was great. Then four more of excruciating pain. Then three of being ok. Then pain again. The roller coaster was exhausting for all of us. I couldn't believe that the pain that had escalated for six weeks to bring us to this was just a flare up. He was missing too much school. I was missing work.

The night he woke up from a dead sleep crying was the night that sent me over. I called the surgeon the next morning and begged for something to help the pain. It had gone on for too long and was too severe to be a flare up. She scheduled a steroid injection for the next morning. It didn't help instantly but by the third day his pain had gone from consistently hovering in the 7-9 range to hovering in the 3-5 range. It was enough improvement that he was able to move without "Ow ow ow!" He was able to sleep through the night and able to return to school.

One set of xrays showed the bone to be "spotty". The surgeon ordered an MRI and prepared me that she thought he was possibly having a new episode of blood flow interruption in the femur. This was so discouraging to look and think we might possibly be back at the beginning again. MRI was just before Christmas.

Last Monday the surgeon called to tell me that the MRI results were good. The spotty appearance of the bone is new bone growth not further bone death! The blood flow has not been interrupted a second time. His bone did grow back flat and is not an ideal shape. There are things he physically cannot do because of the deformity of the bone (like sit "crisscross" or sports that involve crouching like baseball catcher). He will need hip replacement as an adult. At this time though, we are not looking at any further childhood surgeries. That is a relief!

Remember in the second Harry Potter movie when Professor Lockhart tries to mend Harry's broken arm but instead removes all the bones from his arm? When he goes to see the nurse she has this conversation with him.

"He should have been brought straight to me. I can mend bones in a heartbeat but growing them back...."

"You will be able to wont you?" 

"I'll be able to, certainly. But it will be painful. You're in for a rough night, Potter. Regrowing bones is a nasty business."

I showed littlest the clip from that scene and he smiled. I told him he's like Harry Potter and that Harry understands how much it hurts when bones grow back. And just like that our new mantra became "Regrowing bones is a nasty business."  And he always responds with, "Yes, yes it is. A very nasty business." It keeps us all smiling and pushing forward when we feel overwhelmed with his pain. Once again it is the smallest of things that encouraged us and reminded us to keep pursuing hope. We finally see the light at the end of the tunnel.