Playing catch up....

Hi folks! I know, I know. Its been TOO long since I last posted about our sweet Joey but its been crazy busy. The months of May and June are our busiest time of year. It begins with Mother's Day, Matt's birthday, and MY birthday. Then there are a lot of other birthdays mixed in there. Then in June we have more birthdays and our anniversary. This year we will be traveling to the Bahamas for my sister in law's wedding and she is getting married to a fabulous guy! Sadly this is the first time we will be leaving Joey alone for four days. Ugh.... BUT we can do it. My mom is flying up and will stay here at our house so Joey's routine isn't screwed up.

Speaking of houses! I don't think I have even mentioned that we found a house in Landenberg, PA. Its a beautiful two story house for us since we will be here a while. Here's a picture:

Now on to more important things...JOEY!
He's doing so well. He just had his four month birthday. Sometimes I can't believe we made him. He already has a huge personality. See:

He recovered beautifully from his club feet surgery. Its technically called heel cord release surgery. They cut the achilles tendon since its so tight from being clubbed. So they cut it so it will stretch when its time for him be begin walking. He was placed back into casts for 8 weeks. Then he was fitted for AFO's or Ankle-Foot Orthosis. They will hold his feet in place and it will make it much easier for him to walk when it's time. They are the most adorable little booties :)

 On May 10th he had his last big surgery for hopefully a very looong time. It was to correct two hydroceles, which are fluid filled sacs near his groin. Basically, hernias. He was also circumcised. They also fixed his concealed penis so if and when we have to start cathing again it will make it so much easier. You know, when Joey reads this blog years from now, he will probably want to know why I put his business about his "junk" on the internet. :)  But I feel like this is just part of the process and its something that I wanted to share.This was him waiting patiently the morning of the surgery. He's such a good boy!

Joey has begun Early Intervention with a physical therapist. She's nice and Joey seems to like her. She comes once a week and he works on head control (which he can now keep it up all by himself!) and tummy time to help strengthen his stomach muscles to help roll over. That is a slow process and I think he is behind but he has had set backs with the surgeries. This most recent surgery has kept him out of commission for two whole weeks. But I know he will do everything in his own time, when he is ready.

Joey may be behind physically but he is excelling socially. He is laughing out loud ALL the time. He now mimics and smiles when he is being spoken to. He's so smart. He really enjoys arts and crafts. I try to do something arty once a week since I am a teacher :) Here is a picture of our recent activity with paint!

Okay, I will try to keep up better but things have just been so crazy and I think they will just get crazier from here.   In just four weeks we will be heading to sweet sweet Georgia! Can't wait! You will probably find us a Mr. Chick! hmmm....now I'm hungry....


Oh- I wanted to share my favorite family picture. I think it sums up our little family nicely. This was taken on Easter. And I am the only one paying attention.

Gosh I love them more everyday...

The Good, The Bad.....The Government

Its 1:07 am on a Monday morning. I can't sleep. My brain won't stop. There is so much going on, I feel like I need to write it out to help me sleep before J-man gets up for his usual 4 am feeding. Also...my house makes some creepy noises when its so quite :(

Anyway I think I want to talk about the government part of my title. We are in the process of applying for medical assistance. Mainly because we deserve it. Joey deserves it. But OMG is this a tedious, time consuming process. It took TWO hours to gather the paper work to send in for medicaid. Luckily, Matthew and I have been very diligent keeping up with Joey's paperwork from all of his doctors and hospital visits. So that part wasn't difficult. It was making copies and labeling and making sure its fool proof for our case manager. Because we all know how difficult the government can make things. Now, we have applied for social security but our income was too high. *commencing eye roll...now*  so we didn't qualify. BUT we will automatically be eligible for medicaid. You just have to go through all the motions and satisfy whatever clerical work that needs to go through. But if you forget to send in one phone number or forget to dot one i they will send it all back and you have to basically start all over. So I am being overly thorough with it all. The problem is if they will reimburse us for the previous medical bills we have paid. Because like responsible new parents, we paid those bills already. Hopefully we won't be punished for doing so and we will get back pay. *crossing fingers* I just pray that I have done everything in my power to ensure my son will get everything he deserves.

Now on to the bad. After gathering the paperwork for medicaid, I came across Joey's discharge papers with every single flaw and defect he has. I haven't actually gotten to read through those so for whatever reason I thought tonight would be a great night to do so. Boy was I wrong. It was one thing after another and it just really rocked my world. Seeing it there on paper, one after another. All in medical terms which always sounds much worse than it really is. From day one I always felt guilt. Most of the time, nay the majority of the time I feel fine. I look at that sweet face and forget all about everything. But then there is a night like tonight where the guilt just takes me over. As Matt says its irrational. He's not a mother. He wasn't responsible for this tiny baby's well being and keeping him as safe as possible. It's heartbreaking when I think about (God forgive me for saying this) "typical" babies and when they reach the milestones they are suppose to. And Joey will probably do things a little later. Then I start thinking about him in school and how difficult it will be for him to get around and play. Then when he's a teenager and wants to drive a car. Or when he starts getting interested in girls. It was MY job to keep him safe and sometimes it feels like I failed. I failed to keep him safe.

Now with all that being said I know Joey was given to us for a reason. When I got the very first phone call that there might be something wrong I went to see my dad and he told me something that made a lot of sense. (Most of the time he makes lots of sense) When a baby is conceived there are a lot of parts that must come together and its amazing that more things don't get mixed up while they are cooking. So realistically there was absolutely nothing I could do to prevent any of this. I took my vitamins. I stopped drinking mountain dews. I got plenty of rest. I did everything I could do and it was just something that happened. And luckily we were blessed with a precious baby boy who we will love and care for like it's going out of style. He will teach us just as much as we will teach him. We are all lucky to have each other. I just tell myself that he will reach those milestones when he is ready. We will provide him with whatever he needs to be mobile. He will have the coolest car because his will have hand controls instead of those boring foot petals. And he will meet a beautiful sweet caring woman, whom his mother will approve. *wink*  So on those rare occasions I begin to feel sorry for us God reminds me just how lucky we are.

Now this week is a big one. We have another surgery on Thursday. This time he is have his clubbed foot repaired. They will release or cut his tendon in his left foot to ensure that it doesn't tighten back up and curve in again. On the right one they will place a pin to help it stay flat. We are doing this so when it's time for him to be mobile he will have every opportunity to do so. We will stay over night since he is being put under. But recovery shouldn't be bad. Ortho will place casts on for four weeks and then he will be fitted for a brace. The brace is essentially two shoes connected on a bar. He will wear that for 23 hours a day for 3 months. Then only have to wear at night. It's going to be a pain but it's something that has to be done.

Now on top of everything going on, I had to officially quit my job. I LOVED my job. I finally got in the special education department and had high hopes for the future of where I would be working but everything has been put on hold for Joey's sake. Certainly not complaining because Joey comes first and I know that soon enough we will be headed back to Georgia and I will be back teaching in no time. As for now though I get to spend all my time at home with my love bug. Wow...never thought in a million years I would be a stay at home mother. I cook, clean, do laundry, and make sure Joey is happy. Now the first three things are NOT fun but the last thing makes up for them! So I traded one great job in for another great one. Fortunately, I work for some of the greatest people that have been so understanding through all of this and that is why I wanted to do right by them. Because hopefully when we return I can come back to a job that I love.

Alright, I think I am finally getting sleepy. It feels good to get all that off my chest or out of my brain. Plus those noises are getting creepier. Good night to yall and keep us in your thoughts and prayers this week.

Now look what we can do now!

Georgia on my mind....

Well I know there hasn't been a post in a while but The Moore's have been busy as bees. Joey recovered nicely from his shunt surgery and there hasn't been (*knocking on wood*) any issues with it. It does look gigantic on his tiny little baby head, and he is still bald where they shaved his head. But no issues medically. Praise God!

This past weekend we traveled to Georgia for all of my family to see Joey and we needed to grab somethings to bring back with us. We had such a fun time. And it made me realize how much I really do miss the South. Of course I go some delicious Mr. Chick. I do believe I ate there for every meal I could. It was so good and greasy! I miss grease. :) The North just doesn't have food that delicious up here. Actually funny story about the Northern food...a friend of ours wanted to cook us some "fried chicken" since we had been talking about how much we missed Mr. Chick. Well he was so proud of himself- he laid out his chicken and said, "Enjoy! Its ten times better than anything you would get down there!" While I will admit, it was good. But bless him...they were chicken cutlets battered in bread crumbs and I do believe they were baked or broiled in olive oil.

Yep. You read that right.
Nothing in that previous sentence says FRIED CHICKEN! :)

Anyway I digress. We got to see all of my family and they all got to hold him for the first time. It was great. My dad didn't even get a picture with Joey when he was born so it was fun watching him interact with him. He kept saying, "Papa..Papa..Papa...Syrupmakers...Syrupmakers" As if Joey was just going to repeat everything he said. It was cute though. Joey also got to meet his other Great Grandmother. And she was smitten. My mom actually made the drive back with me and is staying for a week to help us get some stuff in order. It's been nice having her here. She's helped out a lot with Joey. I swear though he's gained like 5 pounds since she's been here!

Speaking of gaining weight...what would this blog be if I didn't tell you about the drama that follows us around like the plague? The day before we left for GA, we had a doctor's appointment at CHOP for his recasting and I noticed he dropped about 5 ounces since the last time he was weighed a week ago. So I called his pediatrician and got an appointment later in the day. I told the doctor about how Joe's been spitting up a lot lately and I didn't think he was gaining any weight and a couple of times he even projectile spit up. Well when I told her that she said, " Oh NO! I have to send you guys to the ER. That sounds like he may have pyloric stenosis." Pyloric stenosis is the muscle between the stomach and intestines and sometimes it gets too tight and when babies eat food it just comes up because it has no where to go. It was something that if Joey had  he would have emergency surgery. So we headed over to the hospital to the ER and after waiting FIVE hours and one ultrasound later we found out that he does NOT have pyloric stenosis! Just really bad reflux and would now be eating rice cereal mixed with his formula and taking zantac like a little old man :) He is doing so much better and hasn't spit up at all with it. And now he weighs a little over 8 pounds. He's becoming my little chunky monkey! 

We also just returned from Joey's weekly recasting and scheduled his surgery for correcting his clubbed feet. It's going to be March 29 and we should only have to stay over night. He also had a follow up with the urologist. They did a study on his bladder to see how it works by using a catheter and dye and filling his bladder up. Then they used imaging to watch and see how it reacts. Well the good news is his bladder is contracting like it is supposed to and he is pushing to urinate. Which is GREAT!! Unfortunately his muscle below his bladder is too tight and it is making it difficult for him to urinate consistently. They also found he has two hernias that will have to be corrected. So when they go in to fix those, the urologist is going to inject a shot of botox into that muscle to help it relax. Sadly, that won't be a permanent fix but it will help make it easier for a while. 

Okay well that is what's happening in the wonderful world of the Moores. Hopefully things are going to slow down soon after the two surgeries and then we can relax....I hope! Anyway please enjoy these wonderful pictures from Georgia! 

The Grands!  

Papa holding Joey for the 1st time! 

Mimmie holding Joey! 

Uncle Trey 

Joey's Great Grandmother

Aunt Cassie...hate we missed her mini me!

And just for fun....

Kisses and candy and hospitals....

So over the last two weeks, we have had some excitement. Imagine that right? We made TWO trips to the E.R. this past week and had multiple doctors appointments. First I will explain the E.R. visits. The first visit was for Joey. I noticed when I was changing his diaper that he had this huge bulge to the right of his belly button. So naturally I freaked out and called the pediatrician and they told us to go straight to the E.R. at CHOP. Well good news it wasn't anything super serious. Its an abdominal hernia. Bad news is it's ONE more surgery that he has to have at some point. :( While I am very sad it's another surgery, I am very thankful it wasn't anything serious. Now the next trip was for my husband, Matt. He woke up Saturday morning in horrible pain in his side and said that he wanted to go to the hospital. Well for my strong brave man to say he wants to go means something is very wrong. So we load up and head to the E.R. closer to our house. After waiting around the doctors came in and said it sounded like he had a kidney stone. They told him they wanted to give him an IV for the pain meds. He immediately said no. I would like for you to think, "OH my what a strong tough man, sticking through that pain!" When in reality he doesn't like needles and would have rather dealt with the horrible kidney pain than a needle in his arm. (Men... I will never ever understand) Good news is he passed it and is now back to normal.

Now we had our first BIG doctors appointment at CHOP this past week. And it went well. He saw his pediatrician at the Spina Bifida clinic. I must tell you that this doctor has been the same doctor that was there when the clinic first opened some 50 years ago so he totally knew his stuff. He was happy with the progress Joey is making. We also found out that he is almost 8 lbs now! Then we met with the orthopedic doctor, who decided that Joey needed to go ahead and be placed in his casts. He decided to put both legs in casts to help stretch his muscles so when it does come time for Joey to start walking he would be able to with assistance. We have decided to tell him that when he gets older and sees pictures he was driving his motorcycle too fast!  Just like his scar on his back is from him fighting a shark. Its just a fun way to help him cope with his scars that he will have.  Here is an adorable picture of the occasion:

Then we met with his neurosurgeon.This is also the doctor that did his back closure. Dr. S measured his head and decided that it was time to place the shunt. So tomorrow, Wednesday the 15th, Joey will go back in the hospital to have the shunt placed. Its an "easy" surgery for them and everyone seems very comfortable with it. Joey will only be in the PICU for a night as long as everything goes fine. Matt and I are very happy that they have decided to do the surgery because we have noticed a HUGE increase in the size of his head and we knew he was going to have one so we are glad to have it done. The shunt is placed either at the side of his head above his ear or in the back of his head. It will redirect or drain all the spinal fluid into the opening in his stomach. I know the aftermath of the surgery won't be pretty but he will have another pretty cool scar to tell all of his friends about when he gets older. 

The last doctors appointment we had was with general surgery for his hernia. The doctor has decided to see us back in 8 weeks and then decided what to do with it. If he has his surgery now there is a possibility that it could just come back since babies stomachs are so thin. So we will wait and see what they decide.

Well that sums up our first BIG appointment and I couldn't be happier with the results of the day. We got a lot of answers for our questions and made some important decisions for our little guy.  I will update everyone after Wednesday to let everyone know how his shunt surgery went. I also wanted to show everyone what one of our months look like with all of the doctors appointments we have to remember.

We also celebrated Joey's One Month Birthday yesterday! He's such a miracle baby!

 I hope everyone has a fantastic Valentine's Day!

Lots of Love from the Moores!

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!!

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.

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!