OUR PASSPORT TO PERTHES

April 20th – Elijah begins limping and complaining of his hip hurting. He just played his first select baseball tournament and caught behind the plate almost all 3 games. I thought he possibly just agitated his hip because of it. Shayne disagreed.

April 30th –  Elijah is still limping and seems to be affected by hip pain, so we make an appointment with the sports medicine doctor. He examines Elijah and thinks it’s possibly a case of mild bursitis or a tear in his labral. He orders Elijah off baseball and major activity for 2 weeks. He also gives him an antibiotic for inflammation. Let me tell you how fun it was trying to contain Elijah from activity for 2 weeks. No bueno.

May 17th – He appeared to not be limping nearly as bad and was not in much pain. His “rest” time was over and he was overly anxious to get back out on the field in his team’s 3 game tournament, so we agreed to let him play. With each game he got increasingly worse. When was playing game 3 (of the weekend) of his baseball tournament and after cracking a hit to center field was almost thrown out at 1st, because he could barely jog. I now started getting more concerned.

May 18th (middle of the night) – Elijah woke up crying and wincing in pain from his hip. In his 10 years of life, he has never awoke in pain…..ever. We now both know something is not right. I immediately call the sports medicine doctor early that morning at Cincy Children’s and request an appointment for that day. I remember hugging Elijah for a longer time than normal as he was leaving for the doctor. Shayne even fussed at me for taking so long. It’s like my heart was trying to come to terms with what we were about to find out. I tell Shayne that the doctor must do something. No longer can we just have him rest it. We needed a more concrete exam.

May 18th – Shayne took Elijah to his appointment as I was tending to the other kids. Of course, I asked him for a play by play via text.
“Taking him to x-ray.” – Shayne
“An x-ray? So, they do think something is going on?” – Me (now I’m really getting nervous and anxious)
“I guess.” – Shayne
Waiting impatiently – me
Waiting very impatiently – me
“Legg-Calve-Perthes-Disease” – Shayne
“What? – me
“I just told you. Call you in a bit.” – Shayne
“Disease? What? What disease? Huh? His hip was just hurting.” – conversation in my head…and heart
The doctor did not know much about Perthes and asked us to call orthopedics the following day to set up an appt.
He also gave Elijah crutches and said limit all activity. Sadly, he knew then that baseball this season was over for him.

I immediately started devouring everything I could on the web. The doctor did not even give us any literature, so I felt like we were left to figure this out on our own. The first few websites I looked at appeared to only scream:

Rare
1 in every several thousand kids affected
Age 10 (less encouraging outcome)
Surgeries
Body casts
Stop all physical activity
No cure
No concrete treatment plan

I felt like it was a billboard of bad news. I was super weepy while Shayne was in “fix it” mode. My mom happened to be in town, well not happened to be. I know now God designed it that way. He knew I’d need my mom to process the news.

Because I had no idea how fragile his hip was I went in all out momma bear mode. I contacted Eli’s counselors, teachers, and administrators that same evening and asked them to suspend all major physical activity. I asked them if we could work together to modify his recess and gym times, so he wouldn’t be totally sidelined. We devised a plan to have him attend the special needs classroom and support and engage the students. HE LOVED IT. They also offered him a wheelchair to serve more as a reminder to him that he can’t be bouncing, jumping, running. He happily agreed to take it.

May 19th – On my first call to Children’s they tried to give us a June 18th appointment. June 18th? WHAT? Are you cray? How do you diagnose a child with a rare disease and then ask his family to wait around for a month for more info? NOPE. Unacceptable. Not gonna happen. Not this mom. Not my boy. This encouraged me to go on an all out doctor, info, disease research extravaganza.

Today it really started to hit Shayne. Hard. I knew it was a matter of time. This is typically how we operate. Nothing is a big deal for him and everything is a big deal for me. This is one of those big deals that could not be disputed. Wish I was wrong.

May 20th & 21st – Due to some amazing friends who were divinely placed to hear what we were going through helped us network and make some incredible connections. We landed an appointment with highly regarded Cincy Children’s orthopedic specialist Dr. Tamai. He had great reviews, a personal reference, and was on the International Perthes Study Group. Appt. set for Thursday, May 28th, which was also Elijah’s 4th grade field day. 😦 4th grade boys live for field day. It’s like the pinnacle of school fun!

May 22nd – May 27th – Continued praying and digesting all the info we could about Perthes. It just all seemed so overwhelming. Every story we read was so different. There appeared to be know straight forward treatment. I cried myself to sleep a few of those nights as my mind just could not comprehend what was happening. I always say that a phone call, a text, a diagnosis changes everything. Now we were experiencing that firsthand. Just 1 week earlier my beautiful blue-eyed boy was jumping, wrestling, driving me crazy with his over activity, and now he’s been restricted to crutches with an unknown active future. My heart was grieving for him.

May 27th – Kept praying, “Lord, may Elijah’s body align with your will…..not ours.” THAT is a tough prayer.

May 28th – Arrived at Dr.Tamai’s office armed with a pen, notebook filled with a zillion questions, and Judah as E’s supportive sidekick! Dr. Tamai confirmed Eli’s diagnosis, told us Elijah was in the early stages of Perthes (which is a plus), but is on the older spectrum of the disease (not a plus). He orders a perfusion MRI for the following day to get a read on how much blood Elijah is getting to his hip. He says that if his # is high that we may wait to see what to do, but if his # is low that surgery is almost imminent. We ask him to walk us through the 3 surgeries. They all sound invasive and horrific. He then discusses the 2 body casts that Elijah will need to be in for 12 weeks. This is when tears begin to well up in my eyes BIG time. My mind cannot conceive the notion of him being totally dependent on us and 100% immobile. My thoughts were racing. We left and allowed Elijah to pick lunch. He chose Five Guys. He’s a boy after his momma’s heart. Let’s just drowned our sorrows in french fries! Shayne was reasonably upbeat, but I just could not get past him helpless for 12 weeks. Just couldn’t. Cried myself to sleep…..again.

May 29th – I check Elijah out of school early and take him for his MRI. I call Dr. Tamai’s office to let them know we’re on our way and to be expecting the results soon. Elijah did great! The nurse called me to let me know Dr.Tamai would prob not read result until Monday, so I shift my focus to getting Elijah swimming as this and biking are the only activities he can do.

9:30 p.m. – I looked at my phone for the first time in a few hours as what did I see? A CALL FROM DOCTOR TAMAI!!!!! What? He called and left a message that he had read over Elijah’s results. HOW DID I MISS THAT CALL? I was crushed as I was banking on a great report! Now, back to the mercy of the call. Treacherous.

June 1st – I wanted to rub Elijah’s back and pray for him while putting him to bed. We talked and then he asked me, “Mom, if my MRI #’s are good do you think he’ll still make me have surgery?” This showed me that this was all definitely weighing on his mind. I reassured him that we would consider Doc Tamai’s recommendation and then we: mom, dad, he, and Jesus would make a united decision.

June 2nd – 4 days after Doc Tamai called initially and after I called back several times we finally connected. He proceeded to tell me that Elijah was receiving ZERO. ZERO. ZERO. blood flow to the hip. This was such a blow. I again asked a trillion questions and he went on to explain Cincy Children’s protocol to Perthes. I asked him to script out and email me the plan for surgeries, body casts, physical therapy, and more. He agreed, and then encouraged me that because of Elijah’s strong support group of friends and family that he probably wouldn’t get depressed. Depressed? Huh? Have you met my son? Elijah oozes with happiness. The momentary thought of his spirit being dark overwhelmed me. We ended our call and I sobbed, and sobbed, and sobbed. I called Shayne and I could barely get all the info relayed to him. The treatment plan that they laid out was now becoming a viable option, but I was not ok with it, none of us were.
Again, another long night of research on the web. Found a Perthes support group and kept getting drawn to all those who had been treated by Doctor Standard at Sinai Hospital in Baltimore. His approach seemed more modern, aggressive, and a bit scary. I was up until the wee hours of the morning processing all that I was reading.

June 3rd – I decided to try to call the specialist we had both been reading so much about who is in Baltimore. He specializes in performing a major surgery and then attaching an external fixator to the affected hip/leg for 4 months. SO MANY people we connected with regarded him as the best in the world. Of course, it all seemed a bit barbaric to me. I mean, the thought of Elijah having anything attached to his body was unsettling BUT the fact that he would be mobile, able to go outside and breathe fresh air, go to school if possible, even take a dip in the pool, seemed like the best news yet. Of course, I thought there was no way we would get in soon, but I was highly optimistic and thought what did we have to lose. The woman who received my call was down to earth and warm. She let me know that because Perthes is a time sensitive disease that Doctor Standard makes them a priority. She asked us if we could come 8 days later. HUH? Did that happen? That easy? That quickly? God, you are good. Decided we would take the whole family. I was adamant that I wanted to speak with the doctor, look in his eyes, hear his heart. After all, he was going to possibly be caring for my child in a way that I could never totally understand. I wanted him to know us, hear us, see how unbelievably awesome Elijah is.

June 5th – 9th – Did our best to keep Elijah off his feet as much as possible. He was still going to his baseball games cheering on his teammates and watching his dad coach the other players. Kept him swimming a lot! Made sure that he was riding his bike. Swimming and biking help him to keep his range of motion in his hip. We also were continuing to connect with anyone who was willing to share their story with us. From a family in California to a family in Maryland, we were slurping up all the info, advice, recommendations we could.

June 10th – Loaded up the family and we’re bound for Baltimore. The whole trip I was just praying, hoping, asking the Lord to show us clearly how to treat Elijah, our greatest treasure.

June 11th – Doctor time! Our appointment was for 11:00 and we were brought back to a room about 11:45. About 12:00 Doctor Standard arrived and for 4.5 hours talked with us, explained, demonstrated, shared his heart. Literally as he was speaking my heart was filling up with hope. Although no mom wants to experience this with a child, the thought that we may have a better option than 3 surgeries and 2 (3 month) body casts was absolutely incredible. Of course, surgery in Baltimore will be highly invasive and intense and long, and he will have an external fixture on his leg for 4 months, but……he will not be in body casts, he will get to go to the bathroom unassisted, and hopefully school. Praise the Lord. I felt like we had won the Super Bowl!  We had. The Lord, like He always does and only can, was fighting on our behalf. I just love Him so much. We set surgery date for Wednesday, July 1st.

Side note – We were privileged to stay at the Hackerman-Patz House, which is an on-site house that is offered at a discounted rate for patients and their families. It was precious. We got to meet several families who were in similar circumstances. They were all so dear and the staff was absolutely lovely and over the moon hospitable. Of course, my kids made friends in about 3 minutes flat. We’ll be returning there for our 3 week stay.

June 14th – Back home to our Mosaic family, an afternoon of Elijah cheering on his Stix team and watching dad coach, followed by a fun time at the pool with his buddies, so he could play and remember that he’s still a typical, crazy 10 year old boy….our 10 year old boy.

Constantly praying over him – Jeremiah 29:11 –  “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”

13 days until we’re back in Baltimore.
14 days until his pre-op appointment.
16 days until his surgery.

Soaking up every minute of him. Perthes picked on the wrong kid. He’s gonna #tacklePerthes right in the kisser!

Elijah’s journey continues……

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13 thoughts on “OUR PASSPORT TO PERTHES

  1. We love you guys and our talking to God a lot about Elijah lately. He has such a fun joyful spirit that he loves sharing with others. His smile is absolutely charming and contagious and I bet he’s going to be staring Perthes down with that smile until he wins this battle!!💪🏼👊🏼🙋

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  2. Thinking of all of you during this challenging time and sending prayers of healing your way. Love, Aunt Lisa

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  3. We are praying for Elijah, and for all of you! We know God’s got him in His hands. Love you guys! ❤️

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  4. Elijah and family,
    I read your blog and you all are amazing- what warriors! I can feel the love and support that surrounds you and your faith is what will sustain you during the weeks and months ahead. Know that I will be there every step of the way with you as Elijah heads back to school in the fall- Loveland will do everything we can to make his transition as seamless as possible! Lots of prayers and positive thoughts coming your way from me…Keep in touch.

    Judy

    Liked by 1 person

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