Neuro Psych Testing, Continued, and other stuff

So today we had our 3rd of 4 visits for the testing for Bug. We had the kick off parent only and 2 visits where Bug completed 3 hours of testing each time. On the 22nd we go in to have another parent only visit to go over initial findings. Then an appointment with her ped psych in early February to figure out what we want to do for sure.

So her testing appointment started today at 9am. So by the time we finished and had lunch, it was 1:00. I decided to keep her home with me and give her a day with just us.

Boy, was that a mistake. By the time we got Bubba home and were having dinner (leftovers), I was eating grapes for dinner. Fermented grapes. From a bottle.

And I was in tears. I curled up with my little guy while I cried and he patted my back to comfort me.

Everything was a fight. The doc gave me one page of 'homework' and it was simple stuff, finish the sentence kind of stuff. Like 'when I eat, I...' or 'I'm happy when....' or 'when i go to bed, I....' and EVERYTHING was I don't know. I tried to talk to her about taking her time, and thinking about it, and giving me the first thing that comes to mind... but she kept at it. So I said we'd do it later. That turned in to a fit by her.

Once that happened everything fell apart. We couldn't get her actual homework done. She wouldn't take a bath. It ended with her throwing pencils, stabbing the table with said pencil prior to throwing, and eventually me putting her in time out in her room in with both of us in tears. It didn't get any better. She ended up taking a nap and woke up just as bad off as before going to sleep. Tears happened again.  It was horrible.

So her homework is going back to school tomorrow, unfinished, with a note. The other one will go back to the doctor, unfinished.

And sadly, this all overshadows the 2 fun things that happened since my last post.

First, Bubba turned 5 on Monday.  5!!! I can't believe how he's gotten so big. How has my baby grown up so much so fast? He's been in preschool at the school system since September, and he goes to Kindergarten in the fall. It's insane. He's in glasses now. He looks so grown up!

And last month? I graduated with my MBA, with a focus in finance. It was a long 3 1/2 years. It was hard, and stressful. But it's done. Thankfully. Now to relax for a bit, focus on getting through things like boxes that are hiding in the garage, and cleaning up the desk that just holds crap. Then, I'm not sure what. Focus on my kids. Take care of Bug and figure everything out. Spend some time focusing on Bubba, who we figured out has some allergies on top of the serious need for glasses, and we are beginning to wonder about ADHD for him as well.

Life will go on.

Neuro Psych Testing

So last summer we had bug see a counselor. The match wasn't there, so a few visits in and we stopped going.  This past summer we tried a pediatric psychologist and the match was much better.  After some questionnaires, talking to us, and a handful of visits with Bug, she felt that Bug exhibited ADHD, Anxiety and Depression.

School started, and she went to her 7 year well check, a month after her birthday.  K took her while I worked, and he called me after.  He said she wasn't being bad during the visit, but was being 'her' and it drove the ped to start asking questions.  The questions led him to discussing anxiety with K, to which he filled the ped in on our summer with the Psychologist.

The ped asked if we would ever consider medicating.  We have been, well, not in a rush to consider doing that.  It's not that we are against it, but it worries us when it comes to her age, and how it can affect her long term, how it can affect her young brain.  He asked us to consider talking to a pediatric psychiatrist.  The one thing that drove us to consider was he explained that with something like anxiety in a young child medication can help by helping to calm them and teach them coping skills before they become teenagers.

We decided to go ahead and meet with a ped psychiatrist, to hear it out. Rehashing everything over and over is hard.  She was great, she was concerned, she listened and heard.  She actually told me that  we had been dealing with a whole lot, and that she was sorry that no one had listened to us, or done anything beyond what had happened so far. So agreed with the psychologist, she advised that Bug had almost all the markers for anxiety and ADHD.  She said she wasn't giving the official diagnosis just yet as she wanted Bug to get Neuro Psych testing to rule out other behavioral health issues, including Autism.  She doesn't feel that she has Autism but wants to rule it out, and if she does, she's very high functioning.

She thinks that prior doctors that we've tried to talk to (including a developmental neurologist) tried to look at just what 'they' deal with, and not the entire picture.

So we agreed to the testing.  As she was giving us the paperwork for it, advising on next visit, and giving us some questionnaires to fill out, she also asked us to consider medication.

The testing comes in 4 parts; the first and last are parent only meetings.  The second and third are 2 sessions of 3 hour testing with a 10-15 minute break in the middle.  The initial first visit was going to be in March 2018, but we managed to fill in a cancellation and that first visit is now December 11.

Medication scares me. I don't want my 7 year old daughter to become numb. I don't want her to lose her spunk, lose her stubbornness, lose the person she really is, deep down inside.  I want to help her, I want to help us and try to get everyone some sanity back.  I want to see the little girl that she is 85% of the time instead of only 15% of the time.  I want that smile, that goofiness, that love that shines from her.  But I don't want to numb her.

And once we get the official diagnosis we will need to update her IEP.  I need to make sure she gets everything she needs.

So now we have a monthly psychiatry appointment and a monthly GI appointment for her encopresis.  Which we are getting ready to do a clean out this weekend, along with a specialized X-ray called a sitz marker test, and likely some blood work.

All in my last semester of my MBA.  I'm struggling. I'm feeling very overwhelmed.  Life is hard right now, and we are trying to balance it all.

And poor Bubba, he just deals with all of this.  And in the midst of it all we got a call from the school (he is in the preschool program in our school system as a typical peer) that he failed 2 vision tests.  They go down to 20-35 for preschool, and both times he couldn't make it past 20-50 in his left eye.  So an eye appointment is set up for a few weeks from now.

But we are hanging in there.  We will get there.  Life will continue on and we will push through it all.

The Flu, and Encopresis

So the entire family just got over the flu. It was brutal.  Bug started it, then Bubba, me and K. During our camping weekend.

At least we have a bathroom in our camper.

How does the Flu and Encopresis mix one might ask?  Not real well.

Initially it didn't really affect her very much. She puked and had the runs.  But that meant there were 2 days that she didn't get her miralax and exlax. Then she fought taking her medicine again.

So today? We had our first accident in about a week or so. and she wouldn't poop this morning or this evening. Just the accident. and it wasn't a very big accident.

So there's gotta be more up there. She's just not getting it out.

I really hate that the flu can cause a set back in what's been a good string of accident free days.

Stupid Flu.

Behavior

So today was K's leave day. Typically he gets put on the first flight out of the day, but he has 2 days of recurrent a few hours from home.  So he got a rental car to drive down, and didn't have to leave until the afternoon.

Made it nice, as he handled kid duty this morning.  Normally travel days aren't too bad, it typically hits the kids the next day.  Tonight started out great, I was running late from a work meeting and so we did a random dinner sitting on the kitchen floor, and the kids happily got themselves dressed for bed.

But they found 3 pieces of taffy that K left on the counter.  They know about the taffy, we were all together when we bought it on a mini vacation this past weekend.  They were being so good, so I let them know that after we ate our random dinner and they were ready for bed I let them each have a piece of taffy.

10 minutes later we were getting ready to brush our teeth, and the crap hit the fan.  Bug MELTED down.  It turned into a 25 minute, throw herself on the floor kicking and screaming temper tantrum. Bubba and I went forward with getting ready for bed while she screamed and threw stuff around.  She ended up slamming the door to Bubba's room open, so I put her in her room and closed the door. She kept screaming about wanting to brush her teeth, but not wanting to brush her teeth.

It was epic. I have no idea why (other than the damn taffy).  She did finally calm down, brushed her teeth, picked up everything she had thrown around, and then covered up with her weighted blanket to finish calming down.

It still took 30 minutes before all was said and done (he needed to poop, they both needed to get a drink and then be tucked back in, you name it, they needed it).

On a positive note, she did realize she had to poop, and did it; in the toilet.  So i'm holding onto hope that we are on the upswing of her encopresis.  But I've felt this way a million times before, so we shall see.

Fingers crossed that the next 8 days go as smooth as possible.  Lots of changes as Bug starts first grade the day after tomorrow (she's excited!), I go back for my last semester of my MBA next Monday, and Bubba starts preschool (in the school system as a typical peer - same program she did but typical peer versus IEP student) next Tuesday.

New Direction?

Writing was always very therapeutic for me. I started this blog originally thinking I would share the link with my family and let them keep up with my baby girl, Bug. It became a place to vent in my sleep deprivation, and was my sanity through our last attempt at IVF, and through the birth of our little boy.

It's been a while since i've written. Not because the therapy of writing was gone, but with school and the craziness of 2 young kids, a husband who travels, I just found myself lost in translation, and simply stopped writing.

The last 2 years have been, well, crazy.  And now I'm back for a wholly new reason.  I need the therapeutic benefits again - for my own sanity.

We have continued to struggle with issues due to the peri anal strep that Bug was diagnosed with years ago, after the initial pediatrician ignored us. We changed peds, included a pediatric GI, resorted to miralax and exalt when I really didn't want to, have had X-rays, clean outs, and find ourselves now in year 4 of dealing with continued encopresis.

She remains on an IEP and continues to struggle. She talks so much, but she's still very unclear, and now we are dealing with some added frustration of having to learn new things in school. That's only going to get worse in first grade, but we added in 'brain breaks' and reviews for her receptive speech as well.

We also started her with a psychologist.  We are struggling with sensory issues, depression, anxiety, severe behavioral issues (anger, lashing out both verbally and physically, frustration, etc). Both her and a prior counselor suspect ADHD.

And I'm struggling with it all. Just like she gets frustrated when I sometimes can't understand her, I get frustrated with her (and I shouldn't!!) when she's at her worst, when she's having multiple accidents, when she's refusing to take her medicine, when she's lashing out and hitting, kicking, scratching, screaming at whomever she feels has slighted her.  And a slight to her could be as simple as she didn't want you to LOOK at her, at that EXACT moment, in that EXACT way. Even though 2 minutes ago she wanted, DEMANDED you look at her.

I feel touched out, all the time. She's 7 now, but she constantly has to be on you - hanging on you, sitting on your lap, leaning against you. Doesn't matter if you're eating, sitting on the couch, going to the bathroom. She refuses to do anything alone; she won't go to the bathroom by herself, won't come downstairs in the morning alone (and she's an EARLY riser!!! on a good day she's up at 620, on a not good day it's 500am. and everywhere in between). She hangs on you when you try to make dinner.

A few years ago I had my BFF's father in law comment on the amazing amount of patience I had with Bug.  I feel like over the years that patience has eroded. I feel like I find myself on the ledge too often, and it breaks my heart, and I feel horrible and I beat myself up when I yell at the kids.

I wonder if I'm picking my battles poorly. And because she melts down every time I tell her no, it makes me second guess and question every. damn. decision I make.

I'm now questioning my own sanity.  I'm questioning if I can really be successful at this parenting thing. I'm so scared that I won't raise them to be good people, to treat others right, and to do what works for them; makes them happy. I'm afraid i'm neglecting Bubba because she is so demanding of all effort and energy, and more than half the time it's just me to give it to both of them. I'm trying to find myself a counselor, I'm afraid that I've hit a wall for myself, I think I may be struggling with anxiety myself.

I'm trying to keep it together. I'm trying to reign my own anxiety in. I'm trying not to speak to them too harshly. I'm trying to be the mom they need me to be.  I love them so very much, more than life itself. I would do anything for them, I want to be their everything.

Every year I wonder where the year has gone. 

How did it fly by so quickly?

How did my kids grow so much?

How...how...how...

Some days, when they are particularly hard and I'm stressed because of work, and school, and K is gone, I wish time away.  I hate that I do it, and it makes me sad when I realize what I'm doing. But I sometimes find myself saying 'when she is older/when he is older' and I hate myself for it.  

I really don't want the time to pass. I ask the kids all the time to stop growing, to which they look at me, and giggling, tell me no.

I wish they could slow down. I wish they could stay this way forever. I want the loves, the cuddles, the need for their mommy. I know it won't last, and my heart hurts knowing that they are growing up, and I never know when they will stop.

Already Bubba will only give kisses on your arm. It's adorable, and I'll never force him to kiss me, and I'm happy for the kisses he's willing to share. 

Bug, she's still such my lover. When K is gone, she wants to hug me, and hold me and lay with me, cuddle me and kiss me and just hang out with me. 

I. Love. Every. Minute. Of. It.

2015 was an amazing year.  I made it through 2 more semesters of my MBA. We had our entire first year in our newest home. My job continued to go well, K's job continued to go well.  Bug came a long way with her speech and preparing for Kindergarten next year. Bubba grew up so much that he is really, truly no longer my baby.  I passed a milestone that I never would have thought I'd be interested in hitting as I hit the 2 year mark of nursing Bubba (and then some).

I spent time frustrated, I let my temper get the best of me. I loved my husband and remembered time and time again why I married this man. My heart ached for those lost too soon while it also filled, even more, with love for those still here. 

I made attempts to see family that I don't see often enough. I remembered those that have had their own struggles in their lives. I started to work out again, and kept at it.  I cycled through eating better and giving in to my carb/sugar cravings. I enjoyed some drinks.

And I loved. Oh did I love. 

I thanked the Lord every day that I am still here, that I have the family I have and the life I love. Even during my most difficult days, when I'm ready to run away, I was able to remind myself of 2 things; this too shall pass, and even in the rough moments I'm a lucky lucky woman. 

So I close out 2015 feeling good, feeling proud. Knowing I wasn't always at my best, and that there's improvements needed. But I close it out happy.

I open 2016 knowing that I'll try and sometimes I'll still fail at things. I'll have days of stress and difficulties, but I'll continue to love my life. 

So here's to hoping that everyone has a wonderful year.  

You are my World

Every night, when I get to tuck you in, I hold you tight and try to memorize the feel of your warm bodies against me.  The way they fit in my arms.  The way your heads fit just right into the crook of my neck, or on my chest, or my tummy.  The way your little hands curl up between my breasts, or around my waist, or twiddle with my hair.

The way you throw your little legs over my leg.  Or the way you spoon your little body with mine.  The way you tuck your face into my neck and face.  The way you smell like little girl mixed with dirt and paint.  The way you sometimes want me to tuck you in, and others, in your own show of independence, you do not.  The sound of you as you suck on your tongue.  The way you ask me to leave your door open, and sometimes you ask me to come back in and tuck you in, just one more time.

The way you crawl up in the glider when we go to your room.  The way you let me pick you up and sit down with you on my lap, the way you look up at my and simply say 'nurse mama.'  The way you nurse, and insist that my arm stays around you.  If I move it, for even a second, you reach up and pull it back to you.  When I hold you before putting you in your crib, I try to memorize the weight of you.  The smell of your hair, and your neck.  That smell that lingers on baby boy while toeing the line into just boy. The way your head rests on my shoulder while your legs hang down past my hips.

Every night, when I check on you just one more time before I go to bed myself, I watch you.  In the silence of the night when you are at your most peaceful, I try to memorize the way your eyes and nose fit in your faces.  I try to memorize the way your little mouths hang open, just a bit, as you slumber.  I watch to see your chest rise and fall, and I cover you if you've kicked them off.  I apologize if I got short with you today, even if I already apologized while you were awake.  I try to remember these moments, because they will be gone too soon.  I try to not to think of the day that you won't want these cuddles, that you'll go to bed without begging for one more story, or one more song. One day you'll simply stop asking to nurse, or you'll stop asking me to check on you just one more time.

I try not to think of that day where you go to bed wanting these kisses and cuddles, and you'll wake up too big for them.

Because no matter what I do, and no matter how much I want it, I cannot slow down the process, nor can I stop it.  You will grow up, and I don't want to forget these moments.