Friday, May 24, 2013

A look inside Luke's brain

 These are some graphics I found courtesy of The dyspraxia foundation, that illustrate how some LD's affect the brain.
Luke has dyspraxia, dyslexia, dysgraphia, adhd and spd.

Thursday, May 23, 2013

Bye Bye Paci's

Before anyone says anything, yes I know Zach is 4 years old and he should had gotten rid of that paci a long time ago. But in his defense, he has had a lot of medical issues and it has been his rock, so to speak. He started using his paci when he was almost 2, because they took him off fluids by mouth and he needed something to satisfy his sucking urge. And since then he has been hooked. And really up until now, his Dr has always said he was fine...because he is special and needed it.
But...dun dun dun.... we finally got the urge to take it away.. how? Yes, that is a good question and took a lot of thought. We decided cold turkey was the way to go. So we took all paci's to Build a Bear and stuffed them in his new bear.
 This went surprising good. He stuffed them in before she added the stuffing. And then he pushed the pedal to fill him up.
And he immediately LOVED the bear! He was pretty excited with result.
 And of course, he had to dress the bear. I am not sure why he picked the scuba suit but he liked it. It also has a mask that goes with it...
And he named his new bear "Swimming Man". My kid is very original, but whatever he likes, mommy likes too. And he loves this bear, he has held him tight every minute since he got him. He has done so well without the pac's too, only a couple melt downs the fist day. Mommy is so proud of him for being such a big boy!!
Now... on to pooping in the potty, that is a whole other story...

Monday, May 20, 2013

EGID awareness week and rainy day blues

So this post is probably going to be a bit of rambling, I have lots to talk about but just haven't had time to blog in the past few days. So I'm apologizing upfront but please still read. 

First off, this week is very important. It is National Eosinophilic Awareness week, as everyone knows, Zach was diagnosed with EE or Eosinophillic Esophagitis in April 2010. He was taken off all foods and survived with combinations of feeding tubes and central lines til July 2012 when his last feeding tube was removed. He, as well as all Eos kiddos have been through so many tests and surgeries that it is part of everyday life. The non profit group Cured has brought so much awareness and funding to the research of EGID's. Please consider donating to them and checking out their website for tons of information on all EGID's.

Shellfish, wheat, soy, dairy, peanuts, tree nuts, beef, fish

These are the top foods that most EGID kids are allergic to. With these disorders that can affect the esophagus, stomach, intestines and/or colon the body attacks itself when an allergic food is consumed. It sends eosinophils (which are a type of white blood cell) to the area and they cause damage to the affected area of the GI tract. 

Now on to our rainy day blues....
It has rained so much in the past weeks that the boys have been bored to tears. 
Luke was consoled with Xbox games, while Zach at some point during the weekend decided he was moving out. He even packed a "suitcase" which was his toolbox, with pull ups, a t shirt and his paci's.   
He also made sure he had his piggy bank and the beloved Marshmallow. He did give this thought up shortly after it began. He realized the grass isn't always greener on the other side. Or in this case... All of his toys and favorite things were staying here. 

And on a brighter note, I finally found a kitchen table. I have been searching for months for just the right farmhouse style table and finally scored one on Craigslist. It does make me happy, now to finish decorating the rest of the house. 

Friday, May 17, 2013

Springtime woes....

I love spring, honestly it is probably my favorite season.....BUT I do not love allergies, pollen, asthma, runny nose, bloodshot eyes, sinus headaches and not being able to sleep. Yep, that's what I am dealing with right now. I pretty much feel like a truck hit my head. And on top of that, I have poison ivy or oak on my arm. And it itches!
I am the person who only has to look at it to gt it. I am so highly allergic. I am pretty sure it came from the boys clothes, they play in the woods and I guess it rubbed off on me during laundry. 

So today was pretty laid back, we picked strawberries this morning at a local u pick farm. Zach loves, loves, loves strawberries. They both actually really love all fruit, which is great. We picked 2 buckets but we will have to go back for more before the season ends. I have to freeze enough to last us another year. We ended our day with an ice cream date with Nana and a trip to GameStop to trade in old games and the boys picked out some new ones. Luke loves playing sonic on the Xbox and of course Zach got a superman game....go figure, the boy is in love with superman. 

Which luckily superman is the big hit right now, with the new movie coming out Ina few weeks. There are tons of superman toys and decorations out now, 3 months ago when I was looking there were none. So needless to say, mommy will Christmas shopping this week to load up on superman before it goes extinct again. 

But for now, bed...this sick mommy needs some sleep. 

Thursday, May 16, 2013

How I love them

Psalms 139:14 KJV
I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.

Wonderfully made indeed!!
This verse just makes me count my blessings, both of them. There were times when we didn't knos if Zach would make it, if he would survive another infection, if he would ever  come off his feeding tubes, eat food or just even be a little boy, able to run around and play. 

There are times now that it seems things are just too hard, too many worries, too much stress, too many appts... but to sit back and think where we were and where we are now.

That's amazing. We have learned to cope with so much, our family has been through so much and survived. There were hard days and nights but we survived.  We did it.

And now, to see our boys outside playing, getting dirty. Just being boys... we love it. They are best friends to the end, they both look up to each other and could play together for hours. They are so wonderfully made indeed. 
Oh how I love them

Wednesday, May 15, 2013

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Updated Us... very long overdue

 I am a stay at home mom to two very special boys, have been married to my husband for 10 years this November. Our family has gone through a lot these past couple of years with our boys and things are still coming into perspective. This blog is just a little glimpse into our everyday lives raising 2 special needs boys and also helping bring awareness to many rare disorders and very special kids.
Now about us…

Thing 1 (Lucas)- is a new 6 year old going on 18, who knows everything and always has to have the last word. He has been diagnosed with ADHD combined type, oral and developmental dyspraxia, fine motor and gross motor delays, phonological processing disorder, dyslexia, dysgraphia and receives speech, OT and PT.
He was born at 32 weeks via emergency c-section, he was in distress, having the cord wrapped around his neck preventing blood supply to his brain. We are very lucky to have him, he would not have made it full term and we are very grateful for our doctors for finding out.
Thing 1 is very smart, very creative, and his imagination is far greater than I could imagine. He is truly one of a kind.

 Thing 2 (Zach)- is our 4 year old love muffin, he is a momma’s boy to every extent. He spent a lot of his early years in and out of hospitals trying to survive. He has been through feeding tubes, central lines, iv nutrition, special formulas, tests, tests and more tests, and more surgeries than I can list. But through it all, he remained a strong willed, happy little boy who loves Superman.
No one really knows a diagnosis for him, we know he has Eosiniphillic Esophagitis, food allergies, and some autonomic dysfunctions (mild- mainly sensitive to heat and flushing when over stimulated)

For those that have followed our story from day one- thank you from the bottom of our hearts believing in us and keeping us in your prayers. We have made it, our boys are doing good, our family is good, and the past is behind us. Our boys are thriving and growing.
Through all of the crazy mess over the past year we have kept our faith in God and knew he would bring us through and we will continue to walk the path he has for us.