Updated worries

So help me Noah is going to school tomorrow if I have to sit next to him in the class room and poke him all day long to keep him awake.

He missed four more days of school last week. He made it on Monday, but then woke up with a fever again on Tuesday and was home the rest of the week.

I was trying to remember how many days he missed the week before, but that was two weeks ago peoples and I've slipped a few shots of tequila in my OJ tonight. I just know it was too freaking many.

We repeated his blood work last week and to my relief his white blood cell count was elevated, which is consistent with an infection and makes sense! And, even more of a relief his platelet count was normal! 

His WBC was probably low two weeks ago from a viral infection, and is elevated now because of a different infection. Just bad luck I guess. The platelet count though I can't figure out. If it was due to the Depakote I would expect it would still be low as his dose hasn't decreased that much yet. 

I think I'm going to ask for a repeat level in a couple weeks. Making Noah endure another needle stick is worth my peace of mind, right? Right?

I feel like I am in negotiations with Noah's psychiatrist to get him off the Depakote completely. I'm not sure I've gotten it across to him that I know that Noah needs to be on a mood stabilizer, but that I think Depakote is hurting him more than it is helping him. I need to know if he's in la la land so often because of the medication or because his brain is more messed up than I thought.

We have a phone consult scheduled for next Friday. I get to pay him $140 for a 20 minute phone call. That's a deal, right? Right?

So I'll be pushing the issue then. If he isn't in agreement I guess I need to start looking for a new psychiatrist. Maybe one that takes insurance?

Worries

Noah has been sick on and off for the last month. This past week he has been very lethargic. No fever, a little cough and congestion. He looks washed out. Sunday evening he almost fell asleep at dinner, and that was after sleeping over 13 hours the night before.

Sunday night was spent weighing the options. Send him to school since he doesn't have a fever and hope he makes it. Or take another day off work* (the 7th in a three week period due to sick kids, sick me, and the two days I took off for Orlando).

I sent him to school. He wasn't acting sick after all, he was just dragging ass. And I had a rare meeting free day at work and six hours that I could use to catch up on administrative crap that has been piling up on me for months.

So I took a chance. 

(Does that ever work for you? Because it sure didn't for me.)

By 10am the school nurse called and said he fell asleep at his desk and was now laying on one of her cots sound asleep. I told her I'd be there within the hour.

Before I left to go get him I called his pediatrician and arranged to bring him in that afternoon.

The waiting room at the pediatricians office was standing room only.

The doctor checked him out and couldn't find anything wrong with him. No fever, ears were fine, throat was fine, chest was fine, glands not swollen.

I wasn't taking that for an answer though, because I knew something was wrong. I pushed a bit and used the "I know my kid" line. He agreed to order blood work and then told me to call Noah's psychiatrist and tell him what was going on.

I kept Noah home on Tuesday. He was still washed out, but he didn't sleep like he did the day before. He did play Legos all freaking day long. Mommy put a couple hours of Lego building in too.

Results of the blood work came back yesterday. His white blood cells and platelets are low. Not scary low, but low. He tested positive for a prior infection of mono, but not an active infection.

We think the blood count abnormalities are an adverse effect of one of his medications. It doesn't really explain the lethargy though.

So we have a plan:

• Most importantly, I will not freak out.
• We will start tapering him off this medication (a mood stabilizer).
• We will repeat the blood work in ten days.
• I will continue to not freak out.
• When the results are back I will have a phone consult with his psychiatrist.
• We will continue to wean him off the medication and cross taper with a different mood stabilizer
• If his white count and platelets have not increased I will freak out.

So I'm worried about the possibilities and have pretty much thought through all the bad ones (I'm really trying not to). I'm also worried about how he is going to handle this cross taper of meds. I really don't want to see him go manic and crash like he did last November. But, at least I will know what is going on if it does happen.

Noah goes through so much with his crazy, mixed up brain. Why does it have to get even more difficult for him.

If you have any healing thoughts you can spare, I'd appreciate a few sent Noah's way.


*I'm lucky that my job is flexible and my boss understanding, so when I do have things like this happen I know I can put my family first without worrying about job security. I work hard though, to make sure I give back even more when I am at work. I need them to need me, so I do everything I can to make sure that is the case.

Layers of Loss

One of my  SOUL sisters, Integrity Singer, wrote an amazing post about layers of loss on her blog Peace in Puzzles. 


If you want to understand me better, read it. If you are considering adoption or fostering, read it. If you parent children of trauma yourself, read it.

Thank you Integrity Singer for letting me share this!

Perspective

One of the things I got out of last weekend was some much needed perspective.

While we go through some crazy shit with Noah, we could have it much worse. So much worse! I had to be careful actually, as I listened to everyone's story, that I didn't project their reality onto Noah's future. Believe me, some of the tears I cried last weekend were because of my fear for his future.

The truth is we just don't know what it is going to be like for Noah, or us with Noah, five years or ten years or twenty years from now. It doesn't stop me from worrying and fretting over it, but when it comes down to it I just don't know. I hope that everything we are doing for him now will make his future easier. Shit, pretty much everything we do is in some way trying to help him. But when you are dealing with a childhood mental illness, you just can't know. You hope, and if you are of the praying sort, you pray I guess.

Still, right now we don't have it as hard as many of the moms that I met last weekend. In the moment that doesn't necessarily make it any easier, but when I can take a step back later and look at what is going on with more perspective it helps. Sometimes anyway.

Some of the women are going through serious shit with their kids. I think I'm feeling a bit of survivors guilt right now. Kind of ironic in a way. It's not like Noah doesn't have one seriously difficult road in front of him. A road that we will try to help him navigate as much as we can.
 

So this is what it is like to belong!

Last weekend I attended the 2nd Annual Early Trauma and Attachment Annual Meeting. I spent three amazing days with 67 other "trauma mommas" who are now my "SOUL sisters."

It was one of those experiences that is impossible to describe for someone who either wasn't there, or doesn't have children like ours.

For the first time since Noah was a year or so old I felt like other momma's "got it." No one was judging, no one was trying to lesson the seriousness of what we go through.

I laughed longer and harder than I have in a very long time. And I cried more than I have in a while. (Well, a few weeks anyway.) I got a few shoulders wet.

I heard stories that broke my heart, and stories that inspired me. I learned more about therapeutic parenting and I added many techniques to my coping tool box.

Sixty-seven women that inspire me! Mommas that foster and/or adopt knowing they are bringing traumatized children into their families, and mommas like me that had no idea what they were getting themselves into. Mommas that have survived disruption and children that could not be healed,  and mommas that have been able to help their child heal. Mommas that have walked this journey for many years, and mommas that are just figuring out what they are dealing with.

For the first time in a very long time I feel like I am part of a community and that I am accepted without judgment. I don't think any of us want to be part of this community, but here we are.

I left Orlando Monday morning and felt validated. I arrived home rejuvenated and rededicated.

I am NOT alone!

Photo credit goes to Alison at Crawford Life and Times. Thanks Alison!

MNT Dreams in Families

Have you ever wondered what it is that motivates some people to do what others would consider impossible? We all have dreams right? Some people though, they have a drive that amazes me. Like the main character Jack Rosenblum in  Mr. Rosenblum Dreams in English, by Natasha Solomons.

From Publishers Weekly:
Screenwriter Solomons's debut novel is the pleasant, ripped-from-the-family-archives story of German exile Jack Rosenblum and his unlikely postwar quest to build a golf course in the Dorset countryside. Fresh off the boat and with a Helpful Information and Friendly Guidance for Every Refugee pamphlet in hand, Jack dives passionately into assimilation, starting a booming carpet business, buying his suits at Henry Poole and his hats at Lock of St. James, and avoiding his native tongue at all costs. And while he can afford golf clubs at Harrod's, he can't check off the last item on his list: join a golf club. On impulse, he buys a damp acreage and embarks on the final leg of his assimilation. Meanwhile, his wife, Sadie, obsesses over the past, churning out Baumtortes and other confections. It's undeniably winsome, and while the pace is lackadaisical at best, the details of postwar Britain are nicely observed, and the narrative offers a sweet perspective on some very heavily traveled turf. (June)
 

I've always wanted to excel at what I do. I like being good at things. I like exceeding others expectations. I'm definitely one of those people that gets motivated by someone telling me I can't do something.

I know when it came to having a family I wasn't going to let a little infertility stand in my way. I also know with Noah I'm not going to let the alphabet soup of RAD and ADHD and BPD and PDD stand in my way of doing every damn thing possible to help him. Like Jack Rosenblum I'm going to have my "golf course," were of course golf course = healthy family.

That is one of the things that makes parenting so difficult for me, because I know I'm not always the best mom I could be. There are a hell of a lot of times I think I really suck at this gig. Other times I know I'm doing OK.

I may not have the drive to build empires, or even golf courses, but I do have the drive to work as hard as I can to be the best mother I can be. Fuck RAD and mood disorders and ADHD and people that don't understand, I'm going to kick their ass and build my own little empire of four (or should I say fore?). I started this weekend at the 2nd Annual Early Trauma and Attachment Annual Meeting, which I'll write more about soon.

This post was inspired by Mr. Rosenblum Dreams In English, the March pick for the "From Left to Write" Book Club. A copy of this book was provided to me by the publishers. I am not being compensated for this post and all opinions are my own.

I loved the book by the way! Highly recommend!

I'm working on the suckage

I'm trying to pull myself back from the land of suck. Fortunately, I'm spending the weekend at the 2nd Annual Early Trauma and Attachment Annual Meeting in Orlando and have been amazed and inspired by 67 other moms!

Thank you so much for all of your kind and supportive comments! You have no idea how much they meant to me and how much they helped.