nothing comes to mind....I'll get back on that one

SO it's been almost a year since my last post because I honestly don't get the working of the whole blog thing! Sorry :) BUT I was directed here in order to visit my daughter's school page so I figured why not blab for a minute. Despite not having a lot of positive changes, I now know we spend around $11,000 out of pocket on medical co-pays last year! w'hoo! There goes my tummy tuck! I'm pretty much giving up on all the specialists and counselors who suck the very life out of your finances while pulling their knowledge out of raffle bin! Devin's in the autistic kindergarten this year and the twins only have a couple more years until they are in school...I figure I can manage to survive on hope and caffeine for that much longer!

In the mean time, I continue to pull enough energy out my reserves to get through each day and continue to hope for the best in life, in myself and in others.

Happy ...whatever today is :)

A time for Thanks

What would "Thanksgiving" be without the actual giving of thanks? This is my tribute and thank you to the people that influence me, love me and keep me strong!

My mom and dad are the foundation of everything I am. They are a constant example of love, patience and faith. Everyone loves their parents, but I love them as much more than that. They are also my friends, my guides and sometimes even my banking associates! :) They taught me to love unconditionally, never to judge those who are different from myself, to be strong, to be caring, to keep my head up when feeling down and to be myself. I love you both!

I am so blessed to be from a large family of wonderful individuals! My siblings have been my life long best friends and I am the better person for it! I could tell stories until the end of days about our fantasy childhood but instead I'll give a few examples that only they may understand: The mattresses on the stairs, the large folding sock bin, roller skates with sheets in the wind, mattresses doubling as a go cart, Olsen's back yard (stream tunnel included!), "You can't touch the Floor!", playing Poison in the front yard, The Spencer's, the annual Christmas play, Boo La Boo La, "this is a spoon", "Q!! 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 Splash!", folding up Tom in the station wagon seat while checking into a hotel, shoe vomit in Yellowstone, the puke bucket, "Dad has elastics! Run!", "dad has the hose, Run faster!", 4th of July back yard camping, 2 song mini records from Tom, Pepper passing out during Christmas play and last but not least Chicken Pot, Chicken Pot, Chicken pot PIEEEEEEEE!

Then there's this guy. This incredibly, amazing, loving, seriously-bordering-perfection guy! I can't even begin to imagine life without him. He rescues my heart and soul daily, saves me from myself, keeps me grounded, makes me smile non-stop, has the gift of knowing just what to say, loves me as much as I love him, is the only person in the world that could make me as happy as he does, always holds my hand, takes care of our special little children with all the love and patience I could ask for, knows who he is and where he came from, has a strong testimony that helps me remember mine, is motivated and persistent, sets goals and makes them reality, remembers Valentine's Day every year, works harder then even he is physically capable of, puts his family first, tells me he loves me several times per day and makes me proud to be his wife. I am truly blessed and for all these things, I give thanks!

"I totally Peed-ed!"

Good thing he's so cute!
So it's no secret that Devin wakes up several times during the night and usually ends up in my bed. Well, last night he came in and we made him a bed on the floor, then within a couple of hours he was sleeping at the foot of our bed causing me to scrunch my feet up underneath me. Soooo comfortable! Is it any wonder why I have sleep issues? Anyway, at about 5am he rolls over and wakes me up to say, "Mommy? I made a bad choice, I can feel my underwear and I totally peed-ed" (he always adds the extra "ed" at the end of words!) So, yeah. That's how my day began. 5am. A pee puddle where my feet should be. Washing off Devin. Wishing I were on vacation somewhere....anywhere.

Life in the fast lane

I have decided I'm pretty much writing this blog for myself alone - fact being, I don't really know how to work it, yet and therefor, nobody knows I have it! Ha! oh well, it feels good to get my thoughts out of my brain every now and then even if I am the only one who sees them!

I've spent the last 3 years completely absorbed emotionally, mentally and physically with taking care of my children. You're probably thinking, "wait, Mateya is almost 8 so hasn't she been taking care of them for 8 years, not 3?" True, I have been doing the mommy thing for 8 years, however it's been the last three that include the emotional absorption part. Without going into too much detail...because who has that kind of time!?...I'll give the peanut shell breakdown:

At age 2 Devin still didn't speak so he was recommended to a developmental specialist. The specialist observed him and felt there was more to the issue and recommended an occupational therapist. After a few months he was easily diagnosed as having classic Sensory Integration Disfunction. We began occupational and speech therapies along with intense early intervention. VERY TIME CONSUMING. It didn't take too long for the diagnosis of Autism to be given. But since life was going so smoothly (ha ha) It was almost comical to find out I was carrying twins! To describe the terror in my heart would take the rest of the weekend.

SO..thus began the journey of Devin. The autism, the treatments, the diet, the supplements, the sign language, the picture charts blah blah blah. Meanwhile, and sadly overlooked, Mateya was beginning to show more and more signs of problems. Being so consumed with Devin's needs and the twins made it easy to miss her abnormal quirks. We knew she was a difficult infant but what we didn't know was that none of it was "normal" baby behavior. Now things were becoming more apparent and more in need of being addressed.

After multiple blood draws, urine tests and so forth we were able to see that her little body was in a complete uproar inside! She had so much going on that we couldn't be positive of the extent of the problem. The first thing that needed addressed was a syndrome called Pediatric autoimmune Neuropsychiatric Disorder associated with Streptococcal Infection. (PANDAS) Feel free to look it up if you want an explanation. :) Her case was so advanced that our SL specialist couldn't beat it so he began working with a guy in Chicago and another dude in Idaho. Between the three of them, they came up with a somewhat scary treatment where they shut down the immune system for 5 days giving the body a chance to "re-boot" and fight back. Her immune system had been so weakened that it became necessary to do a food sensitivity panel. She had over 20 hits! We had to completely change her diet - which also meant changing everyone's diet to allow her body to be totally free of any irritants. Once she was somewhat stable we did the immune shut down. No one was allowed inside or outside of our home for 7 days! It had to be completely germ free. We began treatment and held our breaths....It worked! The results came back and the infection was gone. She will have to be on anti-biotics and pro-biotics for the next year to ensure that she doesn't get and infections that could trigger a relapse.

Now we could begin digging deeper.

New blood work showed very high histamine levels (Histadelia) which causes a whole slew of problems in the immune system and neurotransmitters. She is currently on a year long treatment to reverse the damage. We're only a couple months into that treatment so the jury's still out.

As of last week, she has had a return of several tics and anxiety problems. The tics are more advanced than before and are more debilitating to her daily activities. We are now scheduled to meet with a specialist regarding the possibility of Tourette's Syndrome.

This is where I take a deep breath and focus on maintaining my great acting abilities so when I'm hit with the inevitable question of "How is Mateya doing?" I can respond straight faced and not completely fall apart. It reminds me of a line from a movie, "You can't handle the truth!" Ok, that's a bit extreme. But not everyone is ready to take in all the information, and that's understandable! I've had a while to adjust.

I'll end with my favorite quote and current life motto from Mother Teresa:
"I know God will not give me more than I can handle, I just wish He didn't trust me so much."

Amen to that!

Baby it's cold Outside!

This photo is from last winter but I wanted to post it to remind myself of what we have to look forward to just around the corner! I'm pretty sure my hands and feet will be at a permanent 10 degrees for the next 4 months! Perhaps it's low circulation, but regardless...it sucks!

Today I sent Devin on a 3 day vacation at my mom and dad's house. Vacation for me; not so much for them! But bless them for being willing to take him after only being home for 4 days from their own 2 week vacation! It always makes me a bit nervous to send my kids off to someone else's home for any extended amount of time. Devin can be a bit....well...destructive. He isn't as big of a flight risk now as he was last year but he still has moments of poor judgment (to put it nicely) and it never ends well. But, I can honestly say that I never could have imagined how far he has come in the past year! We really hit gold with his current doctor, therapists and teacher. I may have days when my faith wavers but when it comes to Devin's progress, I can see the Lord's hand everywhere!

Saturday is a Special Day....

Who doesn't love a beautiful, warm Saturday? I'm going to go out on a limb here and assume pretty much everyone with little kids, that's who! That or anyone who, for some desperate, unfathomable reason had to make a trip to Walmart! These are two classic situations in which the idea of "loving a Saturday" just does not apply! But, at the end of the chaotic, never-sat-down-once, piles of toys everywhere day I did get to dance with the Rico in the pale moonlight...in the driveway...to salsa music :D I also got to see his dream room come to life (i.e. the soundproof drum room that has taken over a large corner of the garage) I got to sit at the table with my entire family of 6 and have a nice, semi-calm dinner AND got to see the joy in Mateya's eyes from having an evening out with daddy!

So, sure, Saturday's can really, all sorts of suck - and usually they do! But today there was actually a slight sense of (dare I use the word?) NORMAL in the air! Something I could definitely get used to! But know all to well not to bother! Besides, tomorrow is Sunday and if you thought Saturday's could be rough.....WOW - Sundays come with their very own special blend of "Oh-man-this-sucks!"

All I have to say is; Hurray for Mondays!!

Until then...

Katie

Laundry!!

Today is what I have deemed "Laundry Catch-Up Day". In other words, when my babysitter comes, so Rico and I can have some kind of an actual relationship, she folds my laundry. Sooooo it only makes sense that I would be sure to have as much of it clean as possible!! So basically I get up, send the kids to school, put on some headphones and hit the piles! My question, however, is how can one family possibly acquire as much dirty laundry as we do? Seriously! It's ridiculous!