Monday, January 30, 2012

Ellen Show and the ZipZac

OKAY! All my friends and family...please take 30 seconds to fill out this letter to the Ellen Show. A fellow Spina Bifida mama has written this letter (below in my comments) trying to support the ZipZac. Its a basically a bumbo seat with wheels to help our children move around as well as other children. Its an awesome invention and there are some families that can't afford it because it's pretty expensive and insurance doesn't cover it! Help us out!! Fill out your info and copy and paste the letter in the "tell us your story" here's the link to the Ellen Show http://ellen.warnerbros.com/show/respond/?PlugID=10 (The letter is below) Thanks! 
 
 Dear Ellen,
Imagine being a toddler paralyzed since birth and unable to reach many of your toys. Imagine being a parent watching your child struggle and being told by medical specialists to ‘just put your child in a stroller’ since they are unable to use their legs. This is what we went through on a daily basis, but now there is hope.
It all started with the need to give toddlers that are too small for a standard pediatric wheelchair a chance to keep up with their peers. Children needed to have the ability to explore their world, without limitations, something to encourage their blossoming and eager minds.
Now for the good news! Two passionate engineers took on the challenge after seeing one little boy facing this dilemma. It turns out that their invention allows an infant and toddler more independence and mobility than a pediatric wheelchair, and is out-of-this-world awesome! They now call it the ZipZac™ and many children and families are desperately in need of one as well.
The ZipZac™ has reached many children already, even around the globe. Unfortunately, many families are not able to find the resources to purchase one as most health insurance companies only pay for one wheelchair every 5 years.
I’m writing to you today to ask for your help. Please check out the ZipZac™ website (www.myzipzac.com) and their facebook page to read some of the testimonies! Would you consider making the ZipZac™ a feature on your show and give many more families hope?
 Share Share Share!!

Sunday, January 29, 2012

Joey- The Professor

As I was completing the lengthy morning task this morning, I was thinking about how blessed Matthew and I really are. I was thinking back to a couple of months ago when we first were faced with this difficult diagnosis and how we were going to handle this.There were a couple of questions that we were very unsure of the answers. How would I handle this? How would Matt handle this? Will our families ever understand that their first grandchild was going to be disabled? Will this guilt ever go away? How will our marriage survive? How bad IS it truly going to be? Will Joey blame me one day? And of course the question you are never supposed to ask...why God?

Now, while not all the questions can be answered right now but I do know that we will be okay. As I was cleaning his scar this morning, I was also thinking about how much Joey has already taught me.

Things my two week old child has taught me:
1- Responsibility.We have to keep up with doctors names, numbers, and appointment. Cathing (although now we only have to cath every 6 hours now! BOOM!) cleaning and maintaining his back incision. Checking his fontanel to make sure its not bulging or swelling. When he spits up having to guess if is just normal baby stuff or his hydrocephalus. Any type of red mark having to ask; is this just a red mark or did he come into contact with latex..which we still don't know if he's even allergic or not. How is his poop looking since he has bowel issues. Making sure he takes his medicines on time everyday. When should we call the doctor when it could just be a "normal" infant thing? We have to make these assumptions every single day. AND on top of all those things, we have the typical baby things to be concerned about. SO yeah if that's not responsibility, I don't know what is.

2- Compassion. I never knew how much I could love something as much as I love Joey. I will admit when we first found out about spina bifida, I had a lot of hostility and very little tolerance towards other peoples problems. I mean I still feel that way when I see someone complaining on facebook about how stuff they can control sucks but when I hear about other things that they can't control my heart goes out to them. I will continue to pray for them, just like everyone has done for us.
 
3- Patience. Patience with everything. Patience with Joey when he's crying because he's hungry or mad because he's being messed with. Patience with Matt. He's been a wonderful dad but in his defense I have been a "mother" since June but now that Joey is here, this is something completely new to Matt. But bless him, he tries his absolute best. And I love him for that. Patience with family. Patience with our dogs. Even patience with technology.

4-  Being a better housekeeper. Now anyone that knows me knows I am the world's worst cleaner. I hate to clean. I mean I REALLY despise cleaning. I mean why clean up something when you are just going to mess it up again? But now that Joey is here, I want to make sure the dishes are done because it really makes things easier on me at 4 am when he's hungry. I also never knew how a tiny baby who never goes anywhere has more laundry than Matt and I combined. Craziness.

Now that is not everything he's taught me, but those are pretty important things to me. Those are things that I have never really thought about. And if you would have told me a couple of years ago, that I would be responsible for caring for a "disabled" child I would have told you no way. If anyone would have told me about the decisions that we have had to make just for one sweet baby, I would have again told you no way. Matthew and I are very happy with the decisions we have made and while they haven't been the easiest they have been the smartest. And I know I would have never done it any other way. I also think I have somewhat of an answer to that other question- why God? I think it's because he knew that no would ever love this little boy more than us and that he knew we could handle it. Through him of course. And I thank him everyday for giving me the opportunity to do this awesome job as Joey's mother!

This is a poem I found that I really enjoyed and I hope you do to!

Poem: The Special Needs Mother




Before
When I worked,
When I worked at a Job, that is,
I thought I worked hard.
And I did.
I thought I was anxious.
And I was.
But nowhere near
Nowhere Near as hard as I work now
And nowhere near
As anxious as I am now.

But for some reason
For a very good reason
I am happier now.
Lighter now.
More joyful.
And a wee more playful.

And Liberated.
Feminism has nothin' on me.
I am liberated.
Liberated from the trivialities.
Like worrying about what people think
What they think when I dance my funky dance
Or wear my high heels in the gym

Or play with my child

In the supermarket forgoodnesssake
Or when I tell you, a stranger, what I really think
Like you have the most beautiful hair.
Seriously.  Shiny and sexy.
And liberated enough
To smile at your surprise.

I am all these things.

For a very good reason
My child, see, is special needs
And so much more.
SO much more.

So much joy
So much laughter
So much light

He is perfect.

He opened my narrowed eyes
My tight grip
My rocky heart
He taught me to let go
Of narrow expectations
Of trivial worries

Like getting into the right school
Or having the right stroller
Or learning the right musical instrument
At just the right age


So he can get into the right college
And the right job

As if  there were such things.

He taught me what really is right
Like playing
And laughing
And enjoying the now
And loving the simple things
The magical things that we take for granted
Like echoes
And doors.

And if you're wondering
Like I probably would have
In another lifetime
No, I wouldn't want a different child
Or an additional child
Because my child is special needs.

Because, you'd know,
Like I do
With all my heart
That I already have the perfect child.

And that makes me
The happiest mother.

Wednesday, January 25, 2012

Home Sweet Home

So I know its been a while but I have been a little busy..you know having a baby and all! We are so excited to have Joey home with us! I just wanted to update everyone on how things are going with Joey and our adventures in the first two weeks of his life.

I was admitted Friday January 13 at 6 am and was scheduled to have the c-section at 8 am. Unfortunately, they had an emergency and I was pushed back to 10 am. Which actually worked out in my favor, since my dad missed his connection flight in Atlanta the night before and didn't get in until right as I was going in. I would like to say I wasn't scared but that would be a lie. I was scared but I knew there was going to be a wonderful reward in the end. I have never had any type of surgery. Ever. Matt wasn't allowed back with me until I was all doped up and ready. But from what I hear, he was just as scared as I was. But I knew I needed to suck it up and be a big girl, for Joey. The doctors were awesome and at my request there was Aerosmith playing in the operating room. Which the lead doctor that was great! Finally Matt was allowed in. He was so cute in his scrubs. Once we were back together all the bad feelings were gone and we were ready to have a baby. After about 30 minutes of tugging and pulling, our beautiful baby boy emerged at 11:24 am weighing in at 6 pounds 7 ounces. As soon as he appeared we heard a slight whimper and then a huge cry! They whisked him away into another room where a team of nurses ascended on him. Matt was allowed to go back with him, while I listened closely as I could hear his cries. It was music to my ears.

After he was all cleaned up, they wheeled him to the NICU where he was diligently taken care of by some of the best nurses. My nurses forced me to wait until 8 pm to go see him. After, what felt like an eternity, I was allowed to get into my wheel chair to go see my baby. Joey was the most beautiful thing I had ever seen. We couldn't hold him since his back was still exposed.

We waited patiently until his back surgery on Monday January 16th. This surgery took about a hour. Matt and I were a nervous wreck waiting for him to be taken to surgery. I don't think we slept a wink the night before. It was over before we knew and it was a huge relief. His scar is about 6 inches which looks huge on his little body but it looks great! It starts at T-9 and stops at about S-2. But its just a straight line. It hardly bruised. But I will be the first to tell you that my son is probably the toughest guy I know! We had a lot of confidence in his doctor. We were very fortunate to have a doctor that is the best at his job.

After that surgery, it was just a waiting game. Wait to hold him, wait to feed him, wait to change him, wait to cath him. Not to mention that we all had about a million questions going through our heads. There were a lot of different doctors and consults. As of right now Joey has a neurosurgeon, urologist, physical therapist, and pediatrician. Throughout the 8 days we were in the NICU we got both good and bad news. We found out he actually only has one clubbed foot instead of two, which means he only has to have one leg cast. We also knew before surgery he was voiding his bladder a by himself and after the surgery there was a possibility that it could reverse, which it did. So we learned how to cath and we have to do so every three hours. We also discovered he has a deformed rib. One rib on his right side is rounded but it didn't seem to concern anyone, not even Joey. We also left the hospital with NO shunt. Matthew and I had mixed  emotions about that but they gave us very specific details for what to look for if his ventricles begin growing larger. But as of right now they have not gotten any bigger since birth. Thank you Jesus! :)

After all the chaos of the hospital, we were allowed to come home. Of course it snowed the night before and the weather was horrible but we made it home in one piece. Thanks to my dear husband's exceptional snow driving abilities! Now that we are home, things have really been going well. Joey is certainly a sleeper like his mommy. He loves to sleep. He is also an eater. Just like daddy! I am sleeping as much as I can which is about every two hours since we have to cath him every three hours. We have actually established some what of a schedule.

I like to think that Joey knows how many people love him and care about him. The Moore's really appreciate all the love and support we have received through all of this. it has certainly been a challenging experience but Joey is absolutely perfect in our eyes. And seeing that sweet smiling face with his one dimple (like both mommy and daddy) makes everything worthwhile. Well I am wrapping this post up with a smile on my face knowing we are going to be just fine. Thanks to everyone who has helped us. The next post will be after our first appointment with the Spina Bifida Clinic. Thanks for reading!
Here are a few pictures for your viewing pleasure!




Thursday, January 12, 2012

Wowzers....

So.....

We had our appointment today. Needless to say, it certainly wasn't a dull one. It started as a normal ultrasound/prenatal appointment. I peed in the cup. Exposed my gigantic tummy and got the goop spread on my gigantic tummy. The tech proceeded to check Joey's ventricles and head like she always does and she measured they had jumped 7 mm since four weeks ago. They were measuring 20 mm and were now 27 mm. WOWZERS!! That's a pretty large jump. She then continued her journey through the rest of Joey's body and everything else looked fine/same. She sent for the doctor like she always does. A doctor we have never met came in and delivered the news... 

We are having Joey tomorrow.

YES- t.o.m.o.r.r.o.w Friday January 13.

Friday the 13th.

Oh my. Matthew and I weren't prepared for that news. Although we are very very excited.The doctors were just concerned that his ventricles had enlarged so quickly that there could potentially be something going on that they can't see via ultrasound. So we are just a day shy of 37 weeks, which is full term so they weren't overly concerned with him being a premature baby. He also wouldn't be in the NICU any longer than we had originally thought. So all good news. Oh and they said it looked like he weighed about 7 lbs. Geez Louise!

So after getting in touch with my dad and mom and getting them on flights and making arrangements, we decided to go on a date. :) It's been a while since we went out and we figured it was now or 18 yrs from now! So we gorged on some delicious steak and came home to finish preparing for Baby Joey. We have to be at CHOP at 6 AM and my c-section will be a 8:30. They said my recovery will be about 4 hours and then I can travel to the NICU to see Joey. Unfortunately, they aren't sure when they will close his back but we are hoping sooner than later.

Okay, well I have like a million things to do so the next time I will update, there will be an adorable baby boy beside me :)