WELCOME TO KATIE!

We'd like to welcome another new member to our ranks.  "Katie Davis" has joined us.  You can read her story below.  Let's leave so some love and help her to feel welcome here!  It's not everyday we find someone who's been searching for us for two years!!!

Hello All!

Hello!  I am so excited to get to know you guys.  I have been looking for someplace like this for 2 years.  

My story starts March of 2006.  I was going to find out if my sweet baby was a boy or a girl completely unsuspecting, forgetting, as everyone seems to, that ultrasounds are for checking up on the baby.  The nurse kept going over and over my belly saying half sentences like, "What is..." and "Hmm...is that...."  Finally, she brought the doctor in and he said the same half sentences and then,  "Your son has a birth defect called Gastroschisis."  

Gastroschisis is where the abdominal wall of a fetus doesn't grow correctly so their bowls are on the outside of their body.  For 8 weeks they had me come in 3 times a week to watch him.  He wasn't growing and my fluid was low so 3 times a week I heard how my son must have something else wrong with him and IF he lived to be born he would die shortly after.  Then from week 28 to 30 they made me stay in the hospital POSITIVE that they would have to do an emergency C-section.  They were wrong so they let me come home on bed rest, coming in every other day until the 36 week when they insisted I deliver.

JT was born perfect.  3 lbs 9oz of beautiful screaming baby boy with his little purple guts swinging around.  They took him down the hall of U of U to Primary Children's NICU.  His first surgery was a few hours later.  Pretty much all they did was stuff his bowls back in and sew him up.  Parts of his intestines were affected they were too small in places so nothing could pass through.  These parts needed to be cut out but the surgery had to be postponed so he could grow.  (by the way, they were wrong about something else being wrong with him)

Two weeks after he was born, while we were still waiting for the next surgery, they told us he had an infection but don't worry because most everyone gets them and it wasn't likely it was anything to worry about.  They were wrong again.  Bacterial Meningitis.  My heart dropped.  My mind screamed, "THIS IS WHAT PEOPLE DIE FROM!"  For 10 days we couldn't touch him.  He was white, whiter than I have ever seen a person be.  Then they took us into a room full of doctors.  You know this scene, it's the one where everyone except you knows something horrible and it's time for you to know too.

They showed us the MRI's, the ultrasounds and then they explained.  "Your son's brain is liquifying.  The parts that are gone will never come back.  75% of his brain will not exist ever again.  He could be a vegetable...or he could almost be normal...don't hold your breath on that though."  Okay, that wasn't their exact words but close enough.   From that room on, my husband lost all faith in God.  From that room on, I knew JT wasn't being taken from me.  He wasn't dead, I could stop praying for him to die quickly and I could stop crying and planning his funeral.  On good days I still feel like that.  Who cares about the therapy and the doctors offices when you have that sweet child on your lap?

JT has been behind on all of his milestones.  He now walks and he has a fabulous sense of humor.  He is happy.  Completely attached to me, which I love.  He doesn't talk but we have a couple speech therapists.  We recently found out he has sleep apnea and seizures while he sleeps.  Lots of doctors for that.  We also have been working on his left ankle.  They haven't used the words Cerebral Palsy but I think it is safe to say he falls in that circle with all the talk about "tone" and whatnot.  

So we are really busy but I am so freakin' excited about this that I will try my hardest to at least read what you guys write and comment but we will see when I can write again.  I am so happy to have you guys!!!  Sorry about how long this is.

I got this in an email the other day I thought it would be a good thing for many of you. I have not had a chance to go all the way though the blog yet, just glanced at it. Very neat if we can help make this happen.

The Utah Autism Coalition needs your help. Recent laws have passed in 8 states requiring health insurance providers to cover treatments (like speech therapy, physical therapy, and occupational therapy) for autism. They are working on a similar bill here in Utah. The only way these laws passed in other states was through an enormous grass roots effort. Check out the blog and see if this is something that interests you. If so, join the e-mail list, and maybe even volunteer to be a liaison for your legislative district. The bill will only pass with the help of parents, grandparents, friends, and professionals all over the state. Let Utah legislators hear your voice. This legislation is supported by Autism Speaks.

Join the e-mail list by sending your contact information to Utautismcoalition@gmail.com
Check the blog for updates: http://utautismcoalition.blogspot.com/

Sent on behalf of Adrianne Andersen, Occupational Therapist, Primary Children's Hospital

It is Winter

Okay moms...what do you do with your kids indoors? Mine do so much better when they can be outside or being active and now that is has snowed we are panicked! Any ideas for great indoor home activities?

Welcome New Friends!

I noticed there were a couple new pictures on the sidebar, and I just wanted to say "Hello" and "Welcome" to both Katie and Suzanne. Suzanne, I've been reading your blog lately, and I love it! You are really inspiring! Katie, I hope you will feel happy and welcome here--we love getting to know new people on our site, and we love the connection we feel with other moms who understand what we are going through. I hope we get the chance to get to know you both better!

A Thanksgiving tradition.

I happened to be in Target the day after Halloween, and found myself walking past Christmas displays! As I walked around the store looking at other things, I realized that I was thinking about Christmas gifts, and who would be on my list this year. Why am I thinking this? I'm not ready for it to be Christmas! That's when I realized that they were playing Christmas music too!

What ever happened to Thanksgiving?!! Does this bother anyone else?

I like Thanksgiving. For more than just the food. I think it's important to be grateful for the blessings we have. My sister gave me a great idea to put a little bit more emphasis on Thanksgiving. At the first of November, she and her kids make a poster that says: "We Are Thankful For" Everyday, each member of the family writes something on the list that they are thankful for. On Thanksgiving they read everything off of their poster.
I have never done this before, but we started our poster yesterday. Already, we all seem a little bit happier. It's a nice change of mind frame to be thinking about the blessings you have, trying to decide what you can write down today.....

I know this has nothing to do with special needs. But I think it's a great idea and I wanted to pass it on. Especially because I'm thankful for all of you. My friends who truly understand. THANK YOU! and have a happy THANKSGIVING this month!

just thinkin'

I've always thought that as Moms to special needs kids, we have different responsibilities, as opposed to having more responsibilities.  I'm beginning to wonder.  I've been through such a barrage of doctor's appointments, therapies, specialists, tests and follow-ups over the last while that a melt down seems eminent.  It definitely seems like more. I'm craving simplicity.  It's all started me wondering if I'm not just trading soccer practice and dance lessons for therapists and doctors, but that I'm trading it for an awful lot more....ya know what I mean? I have a friend who told her husband that they are not like other people, and cannot do what other people do. I've said those same things in my mind about M.K.  'she is special.  she isn't like other kids.  She can't do the things that other kids do.'  I never thought of it in connection with myself or my family. I'm not sure what I think about it.  If we do - do more- is that why other people think we're supermoms?  Is it even possible to do special mom things AND normal mom things?   Or should we be telling ourselves that like our children, we cannot do all the things that regular Moms do?  My first instinct says that of course we can do it all.  Then my exhaustion kicks in and says, 'no - we do a lot of extra, special, stuff.  We shouldn't have to hold ourselves to the same standards  and then some. Really I think it's probably just a personal issue.  A matter of prioritizing and balance.  (something I'm not doing well at right now)  But it's an interesting question.....what do the rest of you girls think about it?