Where We're At- a new diagnosis

3 Sundays ago, Will woke up sick and so Ellie and I went to church together. After church, I surprised her by rushing across town to take her to see Cinderella. I was the weird mom who kept gettig teary eyes and kissing her during the movie because seeing Cinderella was on my list to do with " Ellie in the Belly" during the uncertain days of our pregnancy when we didn't expect her to live and I was simply overcome with gratitude to be seeing it with her at age 4.5!  She really was happy although by the time I took the picture below it was past nap time and she was done. We headed home to our boys and had lovely naps and a long walk together. Ellie took a bad fall during the family walk but was able to recover and the day was just so wonderful. 
For the last 19 days, I've relieved that day over and over as the "day before the  new diagnosis."  It was such a good day with my daughter and I had no idea what was a few hours away.
Monday started like every other school day- rushed! Ellie and I were hanging out at home- doing chores (me), playing babies (Ellie) & hanging out outside on that beautiful spring morning. Ellie was happy and singing and playing so happily. Until suddenly she wasn't. She took a few falls but due to her arthrogryposis, this is normal for Ellie. She has a high pain tolerance and generally recovers quickly. But after the 3rd fall, at 11am, she wasn't recovering. She also wasn't walking. Nor was she crying; she was screaming.  I tried my usual tricks to comfort her and get her back to playing  but she wasn't able to calm down or bear weight. So I decided we would run a few errands and surely that would distract her (& give me a better idea if something were wrong.)  For the first time in my parenting, I had to leave a store due to a screaming child. I tried to carry her like a baby in to the grocery store to get dog food but part way across the parking lot I had to turn around because her screams were unbearable. I waited until 1pm and then called her pedi. At this point, I assumed she had possibly broken her leg due to a fall but I also kept second guessing myself because she has AMC and falls a lot and maybe this was just a weird reaction to a fall. Her dr said to bring her in ASAP. Because I was in denial, I asked if she could nap first ( this was dumb- she was screaming- no way she could have napped!) (I hold nap time very sacred.) After an examination with her pedi in which she screamed at his touch and refused to let me hold her (very unlike her) and wouldn't let us move her from the stroller and screamed in agony when I drove over railroad tracks or hit a pot hole, we knew something was indeed wrong & were sent for xrays. The xrays were clear. So we were given narcotics and told to try to get through the night. We were up all night long & by 8am we were back with the pedi where we ran blood work and began exploring other possibilities.  I still thought tiny fracture.
By Tuesday afternoon, we had an appt scheduled in Dallas with a specialist. We were up all night again and on the road to Dallas at Dawn Wednesday.  Many nights we considered going to the er but we were told there was nothing they could do to help with the pain except iv. Watching my daughter writhe in agony for hours was gut wrenching. Not being able to comfort her in my usual way by holding or rocking her broke my heart.  After more xrays in Dallas, we had a new diagnosis to add to our list- Legg Calve Perthes Disease. It is extremely rare in girls and our specialist who has a classification named after her him and has studied it extensively has never seen it in conjunction with AMC.  This seems to result in a lot of unknowns. Also, we learned that Ellie is already a year into the disease progression.  This makes sense now as I remember several flare ups of limping, swelling, & pain which I even took her in for and we ran xrays but Perthes refers pain lower in the leg so we didn't catch it. (Not that it would have mattered for the treatment.)  One week later, we remained sleepless (except for two glorious nights when grandparents kept E so we could sleep!!), she remained immobile and unable to bear weight, & she continued to experience great pain.  
 I did find that getting out in the day helped to distract her and lift our spirits. 
I tried taking her to school to eat with her class and my parents took her to see Frozen on Ice. 

By day 10 of not sleeping, We headed back to Dallas, met the other grandparents there who flew in to offer relief and help, and doctors suggested traction. This caught me off guard and caused me to panic so I quickly googled it and began asking questions. The doctor agreed to let us try modified bed rest first with the understanding that if we didn't see pain relief in a few days we would put her in traction.
The next morning, her rental wheelchair arrived. Seeing my daughter who just 12 days prior had been happily walking and playing to now being in a pediatric wheelchair in our home for the first time was incredibly hard. Words can't describe and I'm not ready to go there on a blog. Also, the rental had fur lined seatbelt covers which I removed immediately because weird! Also gross!

For some reason, perhaps because this disease wasn't on my radar, this has been extremely hard on me. Perhaps it was the unexpectedness or the uncontrollable pain. Certainly the night after night of screaming in pain and sleeplessness didn't help. At all. Perhaps it was because it happened during Lent & my heart was already heavy. We spent Maundy Thursday at the hospital in Dallas. A wheelchair arrived at our home on Good Friday. These last few weeks have felt dark and lonely. I've been afraid and sad and raw. I have felt overwhelmed and past my limit. I have felt abandoned. I had a hard time seeing hope or finding God's hand in this too. 
I'm still having lots of feelings and struggling and wrestling with God but I've had sleep this week so my emotions are doing better. Also, taking her in public in the chair hasn't been nearly as difficult as I anticipated. Honestly, I've gotten far more states/questions/rudeness in being in public with a kiddo in prosthetics than with a wheelchair. 
We have found lots of activities that can be done sitting down: crafts, bed baronies, doll house, water table, pedicures, and more!

Today, Ellie began to walk! She was on modified bed rest for a week and today felt like she was ready to try standing and walking. She's limping and gets tired easily but I'm so so so thankful to see her upright and pain free and able to move independently again.   My heart is feeling lighter again and hope is creeping in.  (Sleep makes such a difference.) (maybe so does time- I've had a few weeks to start wrapping my brain around this dx and research and ask questions.) I'm trying to remember that Jesus shows up in the body- when neighbors and friends and family call and text and come visit and drop off dinner- that is God using others to love us well. I am not alone- despite my feelings. We are held close even when we feel alone and raw.

Going forward... I'm not sure. I don't know how often Ellie will experience flare ups. I understand the disease generally lasts 5-7 years. Hopefully she won't need surgery. Hopefully she won't develop arthritis or require an early hip replacement. I assume that now that we have a diagnosis, I can be more aware and sensitive to her pain or events that may require more walking and try to actively prevent a flare up with medication or providing her more opportunities for rest or renting a chair or getting crutches. We go back to her specialist tomorrow so I will know more then. I keep trying to pin down how to feel- I've emailed Dallas pt and I've asked friends and family in an effort to determine if this is minor or a big deal. I find online support groups and entire blogs dedicated to "journeying" with this disease which makes me think it's a big deal.... But compared to my kiddos' other lifelong diagnoses, this disease feels relatively minor. Compared to our friends who are fighting for life- this is nothing. This is doable. I've come to the conclusion that when in the midst of a flare up, it is a big deal because the pain is agony. It can be a big deal when treatment involves no mobility for a previously active child. It feels big to me because Ellie has worked so hard and surpassed so many expectations by being able to walk at all. It feels like another thing ripped away from us.  I struggle wondering how this disease may affect her in the next few years. There are ao many unknowns. But. I also believe that when we get her pain under control and when she is able to live her life again (attending school and dance independently, playing outside independently, etc,) then it will become a minor deal.  I've lived the reality of seeing my kids with diagnoses that should limit them and don't.  Ultimately, I believe Perthes disease will be another part of Ellie's story- a hard part- but it won't define her.  I've seen her feisty, sweet, funny personality return this week. I've been given the gift of hope again.  

(Sorry- long post!) 
(Thanks for sticking around!!)

3 thoughts:

Mrs. Jenk said...

Thank you for always sharing your "rare" kids with us and your very rare heart with us! I will pray for Ellie and your sweet family.

Sharon C said...

Katie, you have such a strong faith...both in God AND in your beautiful kiddos. And I know the strength of both will carry you through. I'm so sorry for this new journey ya'll must endure and will continue to keep your family in my prayers.

Shannon Boyer said...

Good morning! I'm so sorry to hear of Ellie's diagnosis. Jill Crownover shared your blog with me this morning. I had Perthes as a 6yr old girl and my 6 1/2 year old son was just diagnosed with it on May 11th. He will have the tomorrow morning.

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