Ryan likes to pull at (out) her g-tube. If she is not wearing a onesie, she will look at you, raise her shirt and put her hand to her button, and stare us down. She likes to mess with us. If you say, no-no, she laughs and runs away. If you sternly say her name, she looks at you, laughs, and pulls it more. She pulls the plug out and plays with the stopper. She is a stinker.
I would think it hurts to pull? I guess not. Her site is clean and keloid free so I don’t think she is pulling it because it bothers her. I think she is pulling at it, because it bothers us, as I said she is a stinker, and to her it is a game. Like her new favorite, running in to the street.
So today, she pee’d out again at school and they didn’t have an extra onesie. So I picked her up in just her shirt and pants. I distracted her for hours with errands, a visit to Gma’s work and a park trip. The distractions worked until we got home. the pulling commenced and I was tired of playing the game with her. Sure if she pulls it out I can put it back in, but I don’t like too.
So I put her bathing suit (out, in a pile of clean clothes already) on over her jeans and shirt. Problem solved, Ryan 0 – Mommy 1
Mucah got home from work and didn’t even notice.
Our Pickle’s pesky sensory processing issues, as demonstrated in the wearing of leggings.
Tights are a no go, and it’s too cold for shorts these days.
So we adapt and let her be, no skin off of my calf 😀
Last call for those cute summer dresses. No White after Labor Day does not apply to four year olds.
Fall is coming and while Ryan will now leave shoes on, she hates to have her left calf covered. Silly sensory Goose, she kind of looks like a wannabe 90’s gangster kid at the mall if I put her in leggings. She will quickly pull her left pant leg up to her knee and leave the other down. I will try to capture a photo tomorrow.
In the meantime a recent fashion round up.
I had a late night talk with a friend last night. She has a teenage gal, who is also on the spectrum and is also non-verbal. Our talk was actually about her life, and I was trying to be a good friend and listen, and offer what insight I could.
Something that I said to her, has been haunting me all day. The context was getting people to understand your feelings. I told her that it was totally understandable to be upset, because at this point her daughter is her daughter. That sounds weird right? Of course her daughter is her daughter. This Mom loves her daughter. Lives for her and fights for her all of the time. The center of the comment is that her daughter is not likely to “get better”, “snap out of it”, or “catch up”.
And if I am honest, neither is Ryan
Today I had to use the bathroom. I had to, and Ryan was running around the house and then she started crying. Really crying (she has a huge pain tolerance and does not cry easily). I feel horrible, but I had to use the bathroom. I run to her and I don’t know where she is hurt. What she hit. How it happened. My four year old can’t tell me. MY 4 YEAR OLD CAN’T TELL ME! She doesn’t point to her head or rub her arm. She wiggles away when I try to inspect her, much less console and then she is so overwhelmed she starts to bang her head on the floor. Now I am crying too, but I had to use the bathroom.
This is the slippery slope of my grief
How do you accept that grief, accept that this life is the rest of your life. How do you relate to your friends who complain about their kids asking them so many questions or what discipline protocol they are going to enact. No one gets you. No one seems to understand, that you are serving a life sentence when you are the mother of a child with severe cognitive disabilities. You practically kill yourself to make your child’s life as happy as possible, meanwhile you are devastated that yours’ feels over.
I get sad when I pass restaurants or see a group of strangers hanging out, at the mall or a cafe. Commercials of young happy couples kill me, and that car commercial that says “when you were you” is the worst.
I tried to talk to Micah about it. I tried to explain that as a Mom, especially a stay at home Mom, what you generally talk about with your friends are your kids. I feel horrible that sometimes I don’t want to talk to my friends at all, because just talking to them about their kids makes me sad.
I know that to not feel this way I need to get out more, do things for me, find folks like me, talk to a Doctor, but all of that just feels like more work and band aids. I want Ryan to tell me she bumped her head. I want her to at least understand the question and point to her noggin.
Here are some quick pic’s. Tired and the phone blogging has become very old. Last week I sent off the safety bed paperwork. This week, I deal with HP.
Ryan did wonderfully. She was a lot more aware of the audience, so a bit shy. Last year she just ran straight down, which was adorable, but showed to those in the know, what a sensory seeker she was. So still adorable, and progressing!
Working on getting everything together for the fashion show. I am on the Committee and Ryan is modeling.
Committee work has involved some begging (donations), wrapping (raffle baskets), and gluing table decorations (wooden blocks).
Mother of a model has included, inviting guests (begging), buying a dress for Ryan (wrapping), dyeing my hair and putting a fashionable/flattering outfit together (decorating).
Tomorrow I will go bright and early for set up. Micah will bring the talent. I will dress her and we will both pray that she doesn’t run off of the runway after we eat some chicken.
above is a video from yesterday. Last night was Ryan’s final dose of Klonopin a very addictive anti-convulsant. We have been weening Ryan’s dosage .05 ML’s every two weeks for quite awhile.
I don’t know why, but today of all days I looked up this drug and all of it’s withdrawal side effects, also all of it’s usage side effects. This drug is crazy addictive and I wish to God we had said NO. NO we will not give our daughter this drug. No expert, she is not a test subject she is my heart and I say NO. But it doesn’t work that way, we weren’t bullied, her Doctor’s aren’t evil, they were following protocol, we were following their advise as Experts and watching the light in our baby diminish.
Here is the thing, she was put on these drugs to hopefully gain seizure control and hopefully avoid brain surgery. Well Klonopin didn’t work, and neither did the other two she was taking. Here is the rub, she did have brain surgery, and yet a year and a half later she is just now off of it. Going off of all of your RX’s can cause seizures wah, wah
In this post surgical year and a half we have already successfully weaned her off of a drug called Sabril. Sabril’s worst side effect was permanent partial vision loss. She lost her right field of vision permanently from the surgery and we didn’t want to risk what was left. So we chose “the lessor of 3 evils” first, then we waited and watched for her seizures to return and when months passed and they didn’t we started the Klonopin wean.
Every two weeks as we decreased the drug, Ryan “woke” up a little bit. Happier, more aware, more comprehension. So we are excited. I am excited. I’m just afraid of what all of these years of drugs have done to my baby’s brain. What long term effects they have had on her development. Is the risk worth the reward? They won’t just perform brain surgery for Epilepsy, even with obvious brain damage like Ryan had. They have to make sure it is drug resistant Epilepsy first, or intractable Epilepsy in Ryan’s case. So they did, thus we opted for surgery, I just wish we could have opted out of drugs, but as I said that can bring on seizures.
Please pray she remains seizure free and that because we did such a slow wean, she doesn’t suffer through weeks/months of withdrawal. She didn’t lose her vision from Sabril, she fought through four Gastro surgeries and never faltered before she was six months old. She fought to be born, she is a Beast and she is meant for greatness.
I am on pins and needles, and I expect I will be very scared for awhile, but I’m used to it.
Nice to see you again Ben & Jerry
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Just a little video to show you the joy of my girl at the park with her favorite thing!!!
Video the IMG file above