The way things change.

Monday we were dealt quite a blow. I've been struggling on wether to share on social media or not and after lots of thoughts and prayer I've decided to share our struggles. 

Isabelle turned 8 in June. Not long after she was diagnosed with ADHD (Attention Deficit Hyper Disorder), ODD (Oppositional Difiance Disorder), and Anxiety Disorder. We were told she has red flags for Bipolar as well. We were expecting all that and quickly dug in to the work needed to address these issues. Things were getting a little better.

Then the bottom dropped out. Last week we became aware that our sweet, beautiful baby girl was having bizzar delusions. We quickly jumped into action. She has now added the diagnosis of mood disorder, unspecified with psychotic features. What this means is we don't have any answers. Over the next few months she will be observed in therapy and undergo testing to rule out health issues and will be tested for Autism as well. We were told that while early onset schizophrenia is rare (1 in 40,000) it could not be ruled out at this point. 

I have been devouring all the literature I can find about VEOS ( Very Early Onset Schizophrenia, which is diagnosed between the ages of 7 and 13) and I have to say I'm concerned. She has so many red flags. But she has an excellent care team and amazing family and regardless of the eventual diagnosis she will be loved and cared for. 

My prayer is that she will not be givin more than she can handle with or without our help. 

My goal in sharing what she is going thru is to spread awareness. The stigma of mental illness is not something a child should have to worry about. And I hope that by speaking out and sharing her story someone else might find comfort. 

Little by little

Today is child proofing day. My kids are 8, 5 and 2 (for 15 more days). We don't use child locks much as we already keep everything dangerous put where it can't be reached (mostly in locked cabinets in the garage)

Well, things are changing. Ever since Gideon learned to escape his play yard 2 months ago we've run into some issues.

We now keep the master bedroom locked with a key during the day (unless I'm in there, then it's a free pass. And these kids don't waste a second on getting into my bed and snuggling up to watch a show while I work on laundry in there.)

We had already installed chain locks up high on all exterior doors to keep Gideon from eloping. 

Last week we had to put a latch on the bathroom door that only the girls can reach (so they don't have to wait for me to unlock the door in an "emergency") because Gideon had flooded the bathroom for a third time. 

Yesterday I had to put a lock on the fridge. Gideon has become a bit obsessed with looking at the food inside, which is all fine and dandy ecsept when he leaves the freezer open and melts the ice cream, but now he's taking food out and hiding it around the house! The other day it was sour cream under the couch! Good thing I found that one quickly. 😷

He's started showing interest in the drawers now so that's today's project. 

We've always encouraged curiosity and natural consequences and just made sure anything outright deadly was put away, but this kid, my beautiful sweet baby boy could turn a plastic spoon into a weapon of mass destruction!

I don't know if it's a boy thing or an autistic thing or a personality thing. Could be any combination of the three. I find myself asking his therapists any time a new behavior appears if it's something they have seen before. 

I think that's what's the hardest about autism, you never quite know how you will be shocked or amazed by your kiddo. But I guess that true of parenting any child. Once I think about it, it's true of life in general. I guess life really is like a box of chocolates. 

I'm back...

So lots of things have happened since I last posted on this blog. 

We bought a house out in the country! And we couldn't be happier here. 

My husband has been promoted a few times at work. 

We lost my husbands beautiful grandmother, Cuma, at Thanksgiving in 2013.

Elle was diagnosed with an articulation disorder and Sensory Processing Disorder (SPD) in February of 2014

Gideon was diagnosed with Autism (ASD) and SPD in the Spring of 2014. 

Of coarse Isabelle couldn't be left behind and she was diagnosed with SPD a few months later. 

We bumped along dealing with our new life full of therapies for all the kids and hitting lots of potholes on our new path.

In October of 2014 I got sick and ended up having my gallbladder removed. It wasn't too bad and I got a whole week of watching bad TV in bed!

I started feeling unwell not long after the surgery but my symptoms would come and go but at my yearly checkup with my rheumatologist in the spring of this year I was diagnosed with Fibromyalgia.

Not long after that we had a scare with Isabelle that sent her into the care of a Therapist and eventually a Psychiatrist. She was diagnosed with ADHD, Oppositional Defiance Disorder (ODD), Anxiety Disorder and a possible Autism diagnosis. We will be doing testing thru Vanderbilt's Children's Hospital in November.  

I know that reads more like a bullet point list but I feel like I need to give it. As I move forward sharing our story I think it will help having that brief timeline. 

It's quiet time (nap time for those inclined), so I think I'm going to end here and enjoy the quiet for a bit. 

I'll be back soon. 

slowly going the way of the buffalo

These past few weeks have been full of frustration and bad moods and overall exhaustion. I've fallen off the domestic wagon and I'm trying my hardest to catch up and jump back on. Today started with the best intentions. I dropped the girls off at day-school and was so happy that I was able to get them to eat breakfast! I got home and started some red beans and rice in the crock-pot and got the kitchen cleaned up from the mess I left when I went to bed early, not feeling too well.

Giddy and I decided to make a trip to the library and since then I've not gotten a single thing done. I wish I could find some hidden store of motivation.

Today is also the first day of imposing a technology ban in the house. We are all now allowed 1 hour of electronic time in the morning and 1 hour in the afternoon. That's everything from the TV to the Ipads, Ipods, nintendo and computer. Pretty much if it has a screen it's under the new ban. We are currently on minute 42 of our afternoon hour. I'm mentally preparing myself for the meltdown that's going to happen in 18 minutes. We, as a family, have become way to dependent on electronics to be our only source of entertainment, sometimes watching cartoons and playing on Ipads from the moment we wake up till it's bedtime. Enough is enough. It's time I step back into my children's lives and help them grow and learn. I've been absent for too long and now that Gideon is healthy I have no excuse to continue to tune them out.

Hopefully this will also kick start our homeschooling efforts again (Isabelle is in Kindergarten so there is not a ton of formal schooling to be done) since we dropped pretty much everything when we found out how sick Gideon was.

8 minutes left so I better go. I think tonight I'll start my old to do list system that worked well for me in the past. Fingers crossed.

Make Your Own Homemade Pop Tarts

So you love pop tarts? Well homemade ones are so super yummy that you'll never go back to the box. They are really very simple too.

First thing you need is pie crust dough. 

You can make your own or buy the premade rolls from the dairy section of your grocery store. 

Next you need to cut them to size. We did 3" by 6". 

We used a ruler and a pizza cutter to get nice cuts.

Next you'll want to place half your pieces on a nonstick cookie sheet 

(we use nonstick aluminum foil to make cleanup a breeze). 

Choose your filling. 

We used strawberry preserves but you could use just about any jam or jelly or even diced fruit. 

Measure out about 2 TBS and spread on each slice.

Now place your remaining sheets on top and press down around the edges to make a light seal.

With a fork press down to "tighten" the seal all the way around each pocket and pierce the top a few times to make steam vents. 

Take 1 egg yolk and 1 TBS water and mix together to make an egg wash and brush over the tops of all the pockets.

Now bake at 350 for about 10 minutes or until golden brown.

Lastly give a good sprinkle of powdered sugar and enjoy!

Now and then I forget some things

So much has been going on the last few weeks. Where to start... Well, both girls ended up coming down with strep throat but Gideon, Hubbs and I all made it thru unscathed. Still counting my blessings on that one. Gideon's last labs where great. Crit of 32 and retic of 1.7. So great he was officially released from the care of his hematologist. I'm over the moon. We're finally done with all the isoimmunization issues! He's even on the curve for weight and height for his actual age now! This month has been great for him.

I picked up a part time job a while back and have been working a ton. I wish I could continue to be a full time stay at home mom but it's just not in the cards for us right now since we have big plans. Really big plans. We're going to buy our first home this spring (if everything goes right). We feel like it's finally the right time. Hubbs got a promotion and a huge raise last week. Granted to most people making 29k a year is laughable, to us it's a 6k a year raise. That's enough that after we finish saving our down payment for the house I should be able to quit working and stay home full time again. xx Fingers crossed xx.

The one big problem I'm having with working is I've just about lost all my gusto in caring for our home and schooling the girls. I go to work as soon as hubbs gets home and usually get home after 10. Then I work 10-11 hours a day on Sat and Sun each. I put so much energy into doing a good job and working hard that I've basically got nothing left for my family. I'm overwhelmed. I've been so cranky from not getting enough sleep that I've even been yelling at the girls again. That's not a part of myself I want the girls to deal with. I want to have time to do everything I need and want and get enough rest and it's just not happening.

There's lots of other stuff I wanted to talk about but this post has jumped around enough as is. I'll wait for another spare moment and update again. Hopefully soon.

Updates and snippits from our holiday season

First off, an update on Gideon. He has not needed another blood transfusion and his retic is in hyperdrive at 7.9! And 2 weeks ago we got the news that not only is he increasing his hematocrit on his own now, they where finally able to type his blood! He's been filled with so much donor blood that he has always typed as O- but hubbs is +/+ so we knew he had to be positive blood type but we didn't know if he would be type O or B and he is O+ just like his biggest sister. I know that's probably not big news to most people but for us it's a minor miracle. In other Giddy news - he was diagnosed with sever plagiocephaly and has been fitted for a helmet, which he has been in for about 3 weeks now. He's doing great with it and his head shape is already changing. It's amazing the progress you can see on a daily basis.