Sunday, May 14, 2017

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?

Monday, July 25, 2016

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 those crazy boys!

proof I was actually there as well

Saturday, July 9, 2016

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

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.

Tuesday, March 1, 2016


Today is a big day personally, professionally, and politically. I have a lot going on in case that sentence didn't clue you in. And I'm not going to lie, sometimes the anxiety of it all creeps in. I've been reminding myself that God is in control no matter the outcomes.

This morning I sat at my kitchen table, coffee in hand, and read from the Psalms. I absentmindedly turned the pages struggling to focus. Honestly, that is why is was in Psalms, I can read it even when I cannot focus. These words from Psalm 118:8-9 jumped off the page and I want to share them with you.
It is better to take refuge in the Lord
    than to trust in humans.
 It is better to take refuge in the Lord
    than to trust in princes.
Oh how those words touched my soul. No matter who is nominated today for Super Tuesday, I find my refuge in the Lord not in politicians. No matter what happens in my personal life with the decisions that are to be made, I find my refuge in the Lord.

Today, no matter its outcome, I will choose to rejoice. I will trust that whether things go as I hope or otherwise that I am still in the hand of God. He has not forgotten us; He has not left us. My hope and my joy come from God, the maker of heaven and earth. And through the uncertainty and the anxiety, I will choose hope. I will choose joy. I will choose love.

Friday, January 15, 2016

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.

Wednesday, December 9, 2015

An Ordinary Day Like No Other

*this post was originally written for MOPS International and published in their weekly emails in February of 2014*

My husband and I were driving the other day and crossed an intersection that brought a flood of memories. Nearly 12 years ago we were in an accident in that intersection.  A sweet old lady had turned left into our car. As we talked about the accident, Hubby made a comment that he felt so bad for that lady that day. Tears filled my eyes as I told him at the time of the accident I couldn’t feel badly for her. I had too much else to feel at that moment. I realized a grief that I have rarely acknowledged and not fully processed.  
It was December, an ordinary day that was like no other. I woke and got ready for work.  In the early hours I was always alone at work which I loved but that morning I needed. I turned on my computer and went to the restroom.  I started bleeding. I screamed. I wasn’t spotting, I was bleeding. I cried out, “Not my baby! Please God, no. Please no! “I sank to the floor, pulled my knees to my chest and sobbed as I rocked back and forth. I put a note on my boss’ desk that said I was sick and wouldn’t be in, and I drove home.  
It was the longest 10 minute drive I have ever made. I cried so hard my glasses fogged up and I couldn’t see. I was distraught. I sat at home, alternating between gut wrenching sobs and staring into space. I realized I couldn’t be at home, it hurt too much. I aimlessly wondered around Wal-Mart and Costco, looking for any distraction until my husband would be home to hold me. It seemed that every woman I passed was full with child. Hand on my belly that was no longer carrying life, I let the tears flow silently and freely down my face. 
The next day I had a scheduled appointment with my infertility doctor who confirmed what I already knew; my body was rejecting this pregnancy. We talked next steps in the infertility journey while my brain was in a fog of grief. I only remember hearing the words that my baby didn’t implant properly in my uterus and that we needed to do an artificial insemination next month.  Somehow I made it to the car for my husband to drive me home while I tried to process the words I had heard and the pain in my heart. It was on the way home that our car was hit. 
I remember sitting on the edge of the car door after the accident. I remember the poor old lady asking if I was ok but all that I could think was “Lady, please just go away. Please, please, please just get out of my face.” It was surreal. The paramedics asked the questions they do, which I tried to answer until they asked if I was pregnant. No. No, I’m not. When did you have your last period? Yesterday. I snapped my answer as the knife of grief went through my heart yet again. Somehow I made it through that day and those weeks. Seventeen days later I laid on my doctor’s table as we did the procedure for the artificial insemination that resulted in a pregnancy that did implant and brought forth my oldest son. 
I acknowledge the miscarriage now but I rarely allow myself to think about or feel the grief. In the early years following, my husband and I would sometimes ask each other, “Do you ever wonder about the baby we lost?” Any grief I felt would instantly be overshadowed by guilt. If I felt grief over the loss of that child, was I saying that I wished for that baby instead of the incredible son that God has given me?  I wouldn’t have this child who blesses me daily if the child that we lost had been born. It has been a complicated journey of acknowledging that the miscarriage did happen and it grieved me and yet being head over heels in love with the child that God did allow me to hold in my arms. The loss of my baby was quickly overshadowed by the joy of another pregnancy that did come to fruition. Now, nearly 12 years later, I realize I need to feel the grief of our loss. 
I wouldn’t trade my life for anything.  And I have just now come to the realization that grieving the loss of my baby doesn’t mean that I don’t love my son. It means that I have room in my heart to love all four of my children, even the one I never held in my arms.

Friday, September 18, 2015

Hearing the Words Unsaid

It's been a long time since I've written. Nine months here. Less than that in my journal but even there is further between visits than I prefer. It has been so long that I almost fear I have forgotten how to write. Earlier this year I made the mistake of sharing a very personal piece of writing with someone who wasn't safe. I've been hiding my heart and healing since. I longed to find my muse again but my heart hurt so much that I felt actually felt trapped rather than freed by my writing. And now it has been so long that I don't even know what to write about anymore.

I decided that even if I wrote a Seinfeld post (a post that was about nothing at all) that it was still a step in the right direction. I don't even know if this will end up as an update on the insanity that has been my life these past months or if I'll write about the battle in my heart or the opinions in my head. I'm just showing up. I'm putting my fingers to the keyboard and seeing where this post takes me. I've mentally started a post a hundred times in these months and never opened the computer.

I had the joy of visiting long lost friends a few months ago. One a friend I had not seen since her wedding over 25 years ago and one a friend I had not seen since my own wedding more than 10 and less than 20 years ago.  One friend told me upon arrival of some difficulties in her marriage. I paused and wondered how I had not known. Well, we hadn't talked face to face in so many years that I suppose it could be easy to miss by Facebook standards.

The following night I saw the other friend and boldly expressed that Facebook is a liar and I wanted to know how she really was. I specifically asked how her marriage was. She too told me that marriage was in an incredibly difficult season for her. As we talked I realized that Facebook had not lied at all. It had been a long time since I had seen a post about her husband. She had still been there, she had still been posting, but what she posted about had shifted. The things that brought her joy were still there. Unfortunately it took her saying it for me to realize I had seen it happen before my eyes, I was just paying attention to the wrong things.

This happened again recently. I realized too late that I had seen a friend getting more and more unhappy in a situation they were in. Unfortunately I didn't pay attention to what I was noticing until that friend was past the point of being able to continue in the situation and still maintain her personal peace. As we discussed her situation, I knew instantly that I was watching the same exact thing happen in another dear friend's life. I was watching her pull away, I was watching her become unhappy. I had a front row seat to a life changing moment for her and thankfully, I noticed this time. In the end someone I love was still hurt, but I had the chance to walk beside her through the hurt. It was just as simple as noticing what wasn't said.

Sounds simple right? Yet somehow I seemed to miss the first one and only catch the second one in both of these instances. When I looked back over it, they had all told me in one way or another, just not with spoken words. I want to be a noticer. I want to love my people through the ups and downs. I want to love them well. Often loving well means hearing the things left unsaid. It isn't even close to something I've perfected but it is what I strive toward, to love well.