The last couple months have been VERY long. Here's an update on each kiddo, what we've been up to, and how we're all coping.
Don't be put off by how discouraging Julia's update is - the rest of our updates are pretty good. I'm just getting the not-as-good news out of the way first. Because Julia is older now I am trying to be more judicious with what I share about her (& Taylor). Even then I will overstep the boundaries I'm sure. It is fair to say she is where most of my special needs struggle lies.
Above is a photo of her in the hospital this week. She was the first of the kids to get sick. After several days of high fever we thought she was on the mend after her temp lowered. While walking down the hallway she abruptly fell to the floor. She fainted 4 times in about 3 minutes with no recollection of what was happening. Elijah helped me pick her up when she fell and I called the Pediatrician.
They said dehydration and fever alone was unlikely to cause fainting and it could be more serious like a blood infection or heart condition. Since Dean does have a heart defect we've had the other kids tested already but we took her in to the ER as we were instructed. The good news is it wasn't something worse - final verdict was severe dehydration with febral seizures brought on by the fevers.
I share a SMALL amount of what was said to really drive home the impact of how hurtful cyber bullying is and how far reaching its affect can be. Yes, we reported many things to Facebook but overall they did not care.
This led way into a conversation about bullying when she was in 1st grade and attending public school. The short story is that the older boys convinced her to take off her pants and underwear on the playground. They said they were going to kiss her crotch but the recess monitor stepped in. She still retains hurt from this incident and recalls the events easily from memory.
In which my heart aches for my little girl. Seriously, who are these cruel people? How badly must they be hurting themselves to be causing others so much hurt? As the recipient of bullying many times I know how deep and long lasting the impact is.
There are many, many wonderful qualities she possesses but they have not been shining bright lately. I know she's struggling; even so, this is hard on the rest of us. She's been mean (to her sister, parents, PCAs, therapists, etc). Especially if I ask her to brush her hair or wash her hands.
She shuts down completely. She made so little progress in her individual therapy that the therapist almost GAVE UP until I suggested I attend sessions with her. We are struggling to help her. I am having a difficult time with finding the balance between accepting her limitations and having high expectations.
Take a particularly miserable swimsuit shopping trip (here's where I won't share all the details) where her sensory issues, rigidity, anger, and autism were on full display. Even her therapist and I at the end of the session were unable to find a solution. I've been so discouraged. Her Day Treatment therapist seems to be breaking down some walls though!
Julia had her repeat sleep study done a few weeks ago. She wore the atigraphy watch for 2 weeks followed by an overnight sleep study and a nap study the entire next day. Dan said she was ripping the wires off as they would put them on her and refuse to wear them so it took FOUR HOURS to get all her wires on before bed. Total hell. It was worth it for the results! They were able to rule out narcolepsy (still has sleep apnea)!!
This has been an eventful couple months for Bruce! Birthday boy shows off his cupcake.
He's been progressing SO much! He speaks so much now, his expressive language is developmentally on track and we are working more on the articulation piece of it. Another OT session was added to his week at Fraser BUT in his in-home behavioral therapy we will be decreasing to biweekly soon. So, there's a good balance there. It's encouraging.
He was approved for PCA hours as well!! I had no idea he would qualify but the nurse said he would and to set up an intake and find out. He did! So, that's pretty neat. I am grateful DAILY for the support I have in my life. We are a lucky family to have so many people who love us helping raise the kiddos.
Side note: To the "friends" that says I do not have special needs children but rather am just a shitty mom and make things up -- you do not get services such as PCAs and therapies if the EXPERTS do not allow it. So let it go. Quit wasting time being hurtful and trashing me. You know who you are. (Like the passive aggressive thing I did there?)
Not all of February's birthdays were joyous occasions. Oliver Joseph Krube was born into God's hands on February 20th, 2016. After a healthy and promising (albeit painful and anxiety ridden) pregnancy we learned he had passed away at almost 18 weeks due to the umbilical cord being wrapped around his neck. If you want to read more of his beautiful story, visit this post.
Healing as a family simply involves moving forward with life. Not stuck in The Dark Place. Our life is a pretty great one, albeit a little busy. We still have a couple dozen appointments each week plus running to youth group, karate, and getting our schoolwork done.
She's also currently sick and has also been having very painful cramps. We will need to go in to the doctor to look into that - a follow up for her PCOS was needed anyway. She continues to have some pretty epic panic attacks that we are working through together - they continue to be mommy daughter bonding moments.