I will not say bad words.
I will not say bad words.
I gave them up for Lent, so I will not say the words I so badly want to say. I'm trying to not even think them.
When #4 was at Children's Hospital, I learned that the big fear was that all this swelling would act as fertilizer to the bones around it. Those bones would grow at unpredictable rates and cause deformities in her little body. I asked about it and was told that this is a very rare occurrence so I shouldn't worry. Kids' bones either grow weirdly when there's long term swelling or they don't.
Then we saw the orthopedist today.
Sh....dang it.
The x-ray of her foot shows that the bone in her swollen toe, swollen for almost 9 weeks now for those keeping track, has increased in width by approximately 50%. She's one of those kids.
F.....darn it.
Her knee has been swollen now for almost 4 weeks. How long before it, too, starts to grow? I don't know what the cut off is, but I know there's nothing being done to actively stop it. While the doctors search for answers and the rheumatology appointment looms still 2 weeks in the future, her body is rebelling against her NOW.
She's losing range of motion because of this wait. There are new problems being directly caused because of the waiting which will necessitate physical therapy at the very least.
SHE'S 7 YEARS OLD!!!!!!!!!!!!!!!!!!!!! She's my baby. 9 weeks ago her body was normal. 5 weeks ago she was running and playing. Today I had to carry her upstairs because her leg hurts so much. Today she asked me if it would be hard to get a wheelchair because she'd really like one. It would be easier for her. She's 7 and asking for a wheelchair.
D............hmmmmmmmmmmmmmmmm.
I put on my poker face so that she doesn't see my worry. I have to protect my children from seeing the fullness of my fear. I will not say those words, but I can't stop feeling them.
22 comments:
Oh my goodness. Waits like that infuriate me. Can she be considered more of a priority now that this is happening to her bones? Praying for your little girl.
Oh nooooooooooo! I did not give up cursing for lent so I'll do it for you. Poor baby. Poor mama.
I am so sorry to hear this. I will add your daughter, and you and your family to my prayer list. I will try to get you all on a prayer list at my church too. God bless your family.
praying for you and your baby.. so sorry you are all going through this :(
Oh, man. That's just yuck.
OTOH, a good physical therapist really knows what to do, and kids' bones and muscles are really good at recovering, once pointed in the right direction.
I gotta say, that if you have any relics or shrines to visit, in your area, it might help. You might receive some blessings for you and your kid's peace of mind, even if not physical healing. You might ask around. Because there's nothing that'll drive you squirrely faster than having to wait and worry, and visiting a shrine at least gives you something to do.
Oh, my heart aches. I am so sorry for all you and your daughter and family are going through. Are you calling daily to see if there have been any cancellations with the rheumatologist? Maybe there's a shot for an earlier appt? I will pray and pray. I have a seven-year-old baby too, and I can only imagine….
Praying for your family. Second the idea of calling about cancellations. I used to work in a MD office, they happen all the time, but you have to be proactive to get the spots.
Praying for her. Praying for you. So very sorry that she is suffering.
Get it out hon!!! So sorry about this...
reminds me of a few months ago when the little boy we adopted with a diagnosis of arthrogryposis (pretty easily treatable) was instead diagnosed with Larsen's syndrome...12 kids in the US have it...he will need titanium rods in his spine...he will need surgery to make him kneecaps and fix his feel and will be in an immobilization cast for months...
I am feeling for you and praying for you!!!
Carla
www.bringinghenryhome.blogspot.com
I didn't give up cuss words, so I said a few words for you. Praying!
We are praying for her EVEN more now. I'm not saying any s words either from here, rather thanking the Lord in advance for a complete healing for your baby. Love, Loretta
I did say the bad words when my two-year old's appendix ruptured and he turned out to be in the 2% of patients who do not respond to the surgery and first round of antibiotics and the infection reblooms and shuts down their entire digestive system. It was a terrible time and I spent lots of time on my knees in prayer on the floor next to his hospital bed. Our Blessed Mother Mary was a special intercessor for us then and I will send your little one to her in prayer now.
My niece has JRA. I immediately shared your post with my sister and she has some words of wisdom she wants to share, the sooner the better. I have emailed you regarding getting in contact with her.
Oh my goodness, I just read about JRA. I can't even imagine what you must be going through! Offering up prayers for you, continuously!
Thank you all for praying and for cussing for me. It touches me and makes me laugh.
We are on the waiting list for the rheumatologist. I call every few days, but we haven't moved up the list very far.
WBR, I haven't gotten an email from you yet, but will be on the lookout for it.
Maurisa, I had to stop looking. I can't take in any more information. It's just too upsetting.
Saying prayers for you and her. I found that talking to other mothers going through the same medical issues was very helpful....my friends were great, too, but knowing someone else who understood the fear and the EXHAUSTION of dealing with the medical issues and trying to be a reasonable person who still had to smile at kids and put food on the table....well, just knowing others who had lived it was a relief..
Love ya, Sister, and praying for your little one. I will pray to my saint--St Walburga was a healer--for intercession and healing. +JMJ+
AwwwWWWW NUTS!
Got your back. More prayers coming.
Not only will I keep praying (HARD) for you and dedicating my runs to your daughter and her healing, but I'll cuss for you too. ;)
I'm so sorry your little girl has to go through this. And mama too. What a nightmare. Praying for your family.
I knew a high school girl with JRA and she was a cheerleader. Yep, she did those jumps and everything. That's all I know. Did you give up throwing things for Lent? I'm frustrated for you.
So sorry that you are going through this - know how you feel about those cuss words - I clean. Or turn that music up really loud. Or do both. In the meantime, I'll be praying for you and your baby girl. (and I'll do some extra cleaning...God don't let our babies suffer - let it be on us instead. I don't have any babies at home - you can send more my way - just relieve that swelling and take away her pain - no little one should want to be in a wheelchair because it hurts that badly - oh, excrement!).
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