Brave and Sad

Moving on from yesterday.

Thank you Kaitlin for the kind comment left on the blog about how you can be sad and brave and strong.  It reminded me of this, which was going around Facebook just last week.  I love Little Critter, but I appreciate the point it's making about accepting emotions.  I'm not really upset to have cried in front of my children.  They've seen me tear up before, I can be a bit of a puddler and even cry when I'm happy.  But I think there is a line where you have to be careful not wanting to look like you're falling apart because that will be scarier for them. I felt I was able to go to that zone when our cat Willow died last year, and I was strong so that I could guide Cordelia for her first close experience with death.  So I guess that was the hardest part---that I'm scared of how scary this is for them.  

I also heard from a few more of you.  Thanks for sending the love, hugs, and support our way! Thanks for going on this blog-journey with me, highs and lows.   

I think we've decided that moving forward Jason is going to do shots and I'm going to hold Phoebe.  While we get used to this.  I still want to participate in the shots, but she kind of want to be held by me anyway, so maybe it will be slightly more comforting.

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I made an abbreviated post on Facebook about my struggles last night and got quite a response.  Here were some suggestions/responses.  It's a bit long, but I think I'll just share it all.  

"This is hard stuff! Try to give yourself some grace. My paramedic husband can handle horrific accidents and save lives but he has a hard time sticking our daughter. She’s 11 now and we still cry about it. Hang in there! You’re not alone."

"This sounds so much like my first time giving my son an injection at home. It had gone so well at the hospital when I was learning so I felt okay going into it. It was HORRIBLE. His little leg looked like a pin cushion and I poked myself too as he wasthrashing. It was one of my most horrible days as a mother and I still feel sick when I think about it. BUT, he forgave me and I forgave me and I had to remind myself: I’m not a nurse. I didn’t go to school to give shots. They make it look so easy but they’ve done it hundreds of times. I had to learn on my OWN BABY. Since then, it has gotten so much better. I stop before I stick and take two deep breaths, then in like a dart. I’ve learned a little bit each week and have committed to making myself the best dang shot giver because his body needs it. Hang in there!  PS- I still cry sometimes."

"My best advice is don't hide it from her. She may be only 19 months but she understands. Involve her in every step as much as possible. Let her get the needle or alcohol prep, clean the site, get the vial out, ect. Give her a task and stress it's importance. We started all this with my LO when she was 18 months and we tried to involve her in everything and explain everything as we are doing it. From the beginning she never batted an eye at any of it and it has never been a battle to get blood drawn, give medicine, sit for exams, or anything. She is now 4 and the lab people comment that she does better at her draws then their adults. It is hard mama, but you will get more confident at it."

"We're years in to shots for both of my girls. I'm still a mess afterwards. Every time. When they were only doing mtx injections I would wait till they were in a deep sleep and inject. It stopped working when they started humira, but they never woke once for mtx. Maybe you could give that a try? Getting the needle in can also be a bit easier if you make sure they are SUPER hydrated. Most importantly, remember that she will forgive you. You're brand new at this, and it will get easier. Hugs mama"

"The first or second time I s it, I dragged the Humira needle across my toddler’s skin. Yeah, super mom. I know. It gets easier. Our guy is four, will be 5 this summer. We started when he was just after 3. We do biweekly Humira & weekly MTX when we’re healthy. Even though it’ll be two years since we started in August, it still takes two people. One to hold and one to inject. I’m the injector. I’m the holder at the Dr’s office for blood draws and vaccines- but not at home. My hubby had to learn to hold. Because he’d never done that duty before. I have my MIL and my Mom who are both RNs that can help when my husband isn’t around. I know some people that do the pokes at a doctors’ office.  You gain your footing. When you see how it helps, it helps too. Mama, you got this. You have to go into it with confidence."

"I have not started my son's shots yet. But I have done shots on animals for 4H and our horses. If the needle is left over after the shot (I assume so), practice on an orange. It is amazingly very similar to people. Then when you try it again you will be more comfortable. And I am sorry a baby so small has JIA. Hugs to you."

"I once stuck the needle in and went to push in the meds, but ended up pulling out the needle instead, so i had to stick her again. 😞 We are not certified nurses. We will make mistakes but we will keep on nursing our kiddos as needed, because we love them."

"We started shots when my daughter was 2.5. We’ve been doing shots for almost a year now, and while occasionally we have a time where she doesn’t do well for the most part she doesn’t mind the shot much at all. We were doing the back and forth for a long time so neither of us would be the bad guy too, but the truth is that my husband was just not good at giving the shots, which added stress for all of us including my daughter. We ultimately decided to have him mix and prep her shots, and I give them to her. My daughter gets to choose a tv show to watch, which helps to distract her. She also likes to participate in the prep like wiping off her arm with the alcohol pad and will occasionally even want to push the medicine in. For my daughter, giving her as much control of the process as we can allow makes it more manageable for her. I know that it is SO hard right now, but I promise that it gets easier. ❤️"

"Hugs to you ❤️. I know exactly how you feel. My husband had to do both of our kids injections because I just couldn’t do it. I tried to once and both kids said that I hurt them more then it should have. Our little girl has failed on injections and now has moved to infusions, but our son still gets his meds through injection. My role for him is to hold his hand ❤️""

"I practiced on an orange and just couldn’t do it for our own daughter. My husband has always been the one to give injections- both Enbrel and methotrexate. I would have my daughter on my lap, with a stuffed animal or blanket and then my phone for a game/noise/distraction. We’d talk about that the medicine helps her to feel better, to make sure both our kids heard about it and that we’re a team helping each other, so that she didn’t think daddy was the “bad guy” doing the injection. Now she’s 7 and she grabs my phone and plops down without me and my husband does it. 
At the ja conference we heard advice about paying attention to the child not getting a shot. As hard as it is to do when you’re so occupied getting the shot into one, pay attention to the reaction of your other child. If possible, make sure you talk through what’s happening and why to both kids. We were so worried about one kid, we didn’t realize the other would huddle in the corner every time we did sisters shot."

"feels very familiar. All the emotions are things I’ve experienced too. I’m sorry anyone has to deal with this" 😞"

"nclude her in the preparation let her hold the band aid and the guaze let her blow the area you wiped with alcohol wipe ..sing a song she loves do anything you can think of to include her of helping.. my daughter is 22mos she's been doing great every since we started this. Good luck mom"

"I had similar Saturday night. I think I bent the tip of needle during draw. Took two pokes and second went in tough. "

"This made me cry, hugs to you. I know how hard it is. Hang in there! ❤

Manag

"I have never done the shot lovely, husband does it every time and it’s been almost a year now. I hold her down with all my strength and he does it and she’s used to that, she sees me more of the bad guy restraining her to be honest! Some people recommend trying it while they sleep as they just flinch and go back to sleep....might be worth a go? Xx"

"We just got our diagnosis a month ago. I take her in every Monday because I can't stand to give my 14 month old an injection. I have no problem drawing it up but can't get myself to go the next step even though it would save me a ton of time."

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Wow. Thanks Internet Support Group!!  If your child is ever facing some sort of Diagnosis, Internet Moms (and Dads) are there for you!  Get connected to your tribe.  

I think the most useful suggestions were to practice on an orange and involve Phoebe more in the process.  I do not really like the idea of injecting her in her sleep.  I think she would wake up, and even if she didn't, it still seems like some sort of gray-area of consent in the future.   It may work for some people, but I don't think it's for me.  But letting her help wash her leg with the alcohol wipe and hold the band aid sounds much more up my parenting-style alley.  :)  I can at least try it, though I'm pretty sure she will still cry!!

But maybe things will get better.  Phoebe was having a pretty amazing day.  I kid you not, she was taking her eye drops WITHOUT FIGHTING OR CRYING today.  HERO BABY!!!

We did go to see Dr. B this afternoon.  Another thing I have great appreciation for is her availability and willingness to see me.  One thing in the Facebook group that I was seeing was people struggling to get appointments.  Like in Arkansas, there are only 2 pediatric rheumatologists in the whole state and people were suggesting driving to another state.  I told Dr. B how much grateful I was that she offered to examine Phoebe's hand herself.  She told me that there are 9 states that have NO pediatric rheumatologists at all.  She also apologized for being late, she was running behind.  But I had no complaints as I know she totally squeezed us in and is a very, very busy doctor.

To be honest, I kind of expect this to be a more in and out check in, like when you go to the pediatrician, but Dr. B was very thorough and went over examining all of Phoebe and wanting to know all the details about how she is doing on the meds and with PT/OT starting.  She bent and twisted Phoebe's limbs to see if the injections she had done were working, and seemed pleased!  

Phoebe's cyst on her hand is from synovial fluid.  She couldn't really say if massaging her hand had maybe displaced some fluid, but it seemed a little unlikely.  She also noted that the cyst is very near her wrist, so she could have some arthritis building up in her wrist, or in her hands around the tendons there are also lots of little bones.  Hard to say.  But, she agreed with the On Call doctor--- leave it alone.  This isn't something to soak or ice or drain away, we have to control the inflammation.

In her email, she said she would maybe consider doing a course of oral steroids for Phoebe, which was worrisome since she had previously been telling me not to do too much steroids.  But after seeing her and that she still had use of her hand (although she does not want it touched!), she didn't want to do more steroids.  Phew!  If she needed them, we would do it, but it is a relief to not have to add one more med.

We go back in two more weeks and then Phoebe will also have lab work done.  We'll then try and stick through til May and if Phoebe is not improving on mtx by then, we may move on to a biologic sooner rather than later.  In the mean time, I really hope she does not get any more cysts!!