Lets back this up...
Typically after Jilli has one of her crashes she is a bit emotional for a few days after we are out of the hospital. We typically blame it on the steroids.
This time because her lungs did not swell as much we chose now to do the steroids. There hs always been a few questions about what the steroids help and what things are caused by steroid side effects.
What we are finding this time is a much harder recovery.
While Jilli regained walking and talking quickish, it was other skills that others might not notice as quickly from the outside that were really impacted.
Her fine motor skills took about a year backslide which has impacted her coloring, drawing and writing.
She lost several of her letter sounds and sight words.
Her stamina is still really low.
Her verbal skills took a hit.
But the biggest thing is that it really impacted her emotional regulation and impulses.
Things that are normal to her are suddenly the end of the world. Things that use to be simple send her into tears. Part of it is that she is struggling with communicating her feelings. Talking about things and talking about feelings are different skills. She can normally tell us when she is upset or frustrated or scared, however right now she is expressing those things in behavior and impulsive choices.
This is causing a child who is very even tempered and easy to talk to to become a child who the slightest thing makes her cry.
Last night was a very hard night here. We have never seen our sweet girl make the choices she did last night and at one point her emotional regulation was so off that she started vomiting stomach bile because she could not calm down.
Having been a teacher I have a lot of tricks. I was using all I could think of an eventually she calmed her body but we had some scary moments before that.
It was very hard on Brent and I.
There are some moments right now that we feel like we brought a different child home. We see times where we have our sweet girl, but we are all on edge.
We were starting to think it was getting better before last night.
Today has been better. Today has been calmer, except for speech where she really struggled again.
She says her body just feels out of control, so we are doing our best to help her. We are trying to teach her strategies to help herself as well.
I think part of it is that she is frustrated and I would be too if suddenly I had to reteach my body a bunch of things.
So today for Halloween there was a part of me that just wanted to stay in. We have had a busy week with meetings with our new DME (they have been an answer to prayer!), a meeting with the waver for Lydia, and phone conversations with MAW (currently I am frustrated as they are being strange about letting her do her wish since she is on oxygen and they are struggling with asking questions and instead making assumptions, right now this is adding to my stress). We also have another waver meeting tomorrow and another meeting on Friday with our new DME since we did first set up but needed to do the individualized stuff. We also found out that the new DME can not do the pulse ox test for Jilli so we are waiting to see if our insurance needs it, so that is in limbo right now. Every part of me just wanted rest...
However...
Its Halloween. Now normally that means we only go over to one house. Our AMAZING friend Annette who is amazing at loving us, always does something safe for the girls for Halloween.
I posted on Facebook over a week ago about the Teal pumpkin project and how this was the first year Jilli felt a little bummed that Halloween is not a safe holiday for her. I was encouraging people to think about kids like Jilli (yes person on my feed who decided to post a meme about how kids these days are too complicated with all of their needs on Halloween... and no I did not find it funny at all... there is nothing funny about making fun of kids food allergies).
So our plan tonight was to just run to one house that is close to ours...
But then my phone buzzed...
It was people texting me that they had safe trick or treat things for the girls and inviting us to their house to trick or treat...
I am seriously holding back tears as I type this.
Those were the most amazing text messages!!!
I watched community come around my girls and love them and include them! It is AMAZING!!!
So the girls put their costumes on and we drove around to the people who text us and went safe trick or treating. The girls thought it was amazing to be included. Jillian was SO happy.
Tonight was a night of healing for us after a very rough yesterday and I am so thankful for each person who played a roll in that. I can not even explain to you how much those texts meant to me. I can't tell you how much it meant to us for you to invite us to your house to trick or treat. You made an impact on our heart.
Continue to pray for us as we are working back towards baseline. I am speaking at a fundraiser this weekend and then we head into a week of appointments and a trip to IR for both kids for tube changes.
Tonight I am excited to go to bed in a much different mood then last night.
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| Jilli decided she wanted the strangest/weirdest/spookiest looking pumpkin so she chose a non orange one and drip painted it |
Also, I went and voted today... if I have time to vote, so do you... go do it!!!!!!
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