Sunday, February 28, 2010

Just some pictures

Just fooling around with my camera - still trying to figure out the f-stop and all that good/important stuff.
I do love those cheeks, blue eyes, curls and rosey red lips - Hailey girl you are too cute!
My other cutie-pie with his super cool H&M jeans - thanks Uncle Chad!
Playing with one of his new toys and looking over at Daddy.

He says, "I know I'm cute."

Saturday, February 20, 2010

Dylan's 1st Birthday!!!

Dylan had his first birthday today.  We had a great party with all of our family and friends.  Everyone had a wonderful time.  Thanks to everyone for driving all the way out to our house (sorry for all the traffic).  :)  We love you all and are so thankful that you were able to celebrate with us.

All of the kids ready for the pinata.

Dylan got to pull the first string.

The birthday boy loves his new swing from Mommy & Daddy.

He loved the trampoline (he really loves anything that bounces).

Dylan with Auntie Kerri.

Happy Birthday Boy!

Dylan and Uncle Chad rockin' the leather jackets and sunglasses.

At the end of the night Dylan enjoyed a biter biscut.  He is trying really hard to hold on to it.  We are so happy that he was actually trying with both hands.

Dylan's first time tasting ice cream and some frosting - I think he likes it.

Thursday, February 18, 2010

Close to the BIG DAY!

On Saturday Dylan will be having his FIRST BIRTHDAY!!!  I can't believe how fast time has gone.  I also can't believe that we will be celebrating this day.  After the diagnosis I honestly wasn't sure if this day would come for Dylan.  He had such a rough start and we had so many uncertanties, but all of that has changed.  He is such a healthy, happy, loveable baby.  He has brought our family so much joy.  We are so proud of all of his accomplisments and can't wait to see what this next year brings. 

He has gone from this little tiny baby in the NICU to...

...our strong and happy 1 year old boy!

Thursday, February 11, 2010


Dylan is thriving!  I can't believe the change in him over this last month.  It is as if he has "come alive" so to speak.  He just seems so much more alert and interactive with the world around him.  He seems especially active when he is swimming in his Water Way pool.  I don't know what it is but the water has a wonderful effect on him.   He rolls and kicks, splashes and grabs his legs and feet when he is in the water.  He has been cooing and babbling up a storm, and smiling and kicking with excitement when someone comes up to him.  It makes me want to cry when he does this.  I am so proud because in the beginning it was rare for Dylan to even make eye contact.  He seemed completely unaware or uninterested in the world around him.  Now he turns to the sound of his name and looks for us, and he actually is beginning to have some separation anxiety, YEAH!  When we got the diagnosis I remember asking the Geneticist if he will ever know or recognize us.  She said "maybe not."  He has proved her wrong again! 

I also took Dylan to his first session of PT/OT today.  He did so well.  He melted their hearts with his adorable smile, beautiful blue eyes and one little blond curly-Q on the top of his head.  All the therapists were awwing over him.  They gave me a lot of helpful tips and goals to work on at home.  He will now have PT/OT twice a week and his home therapist once a week - my days are pretty full but I am very excited to see how he progresses with all this extra help. 

Happy boy!

More Wingbo time, he still won't put weight on his hands but now he is reaching out for and grasping the rings in front of him.  We work on this every day.

Water therapy, Dylan's favorite.

Tuesday, February 9, 2010

Ode to Huckleberry

This post is about our wonderful dog, Huckleberry, our Chocolate Lab.  Mitch and I brought him into our family when he was just 8 weeks old (he's is now 7yrs), he was our first baby and taught us a little bit about parenting.  Hailey taught him how to put up with little kids and now Dylan is doing the same.  He is the best dog, we all love him and spoil him very much. 

Dylan was very happy to get some Hucky kisses.

Hailey was about 15 months here. 

Hailey was a little over a year in this pic, she used to ride Huck all the time, now she is too big.

Huckleberry even lets us dress him up for Halloween - he was a vampire.

Hucky in the flowers.

Sunday, February 7, 2010

Neurosurgeon Update

I have some bad news.  When Dylan went to see the Neurosurgeon last week we found out that he will indeed have to have spinal surgery.  :(

Let me back up a bit for those of you who don't know - when Dylan was in the NICU after birth every test in the book was performed on him one of which was an MRI which stated that he had a "mildly tethered spinal cord."  That means that some of his nerves are attached to the vertebrae, which is not ideal.  When I first took him to the Neurosurgeon when he was 8 weeks old the doc told me that newborns have too much fat tissue to truly see a tethered cord and wanted him to have a repeat MRI when he was around 7-8 months old.  So, when Dylan was 7 months he had another MRI and the report stated that the "spine appears unremarkable, and that there are no abnormalities noted."  I took that as meaning that everything was fine and tried many times to contact the doc by phone to see if it was necessary to bring Dylan back for another appointment - he never returned my calls.  I showed the report to Dylan's Pedatrician and she said that based on that report everything looked fine.  But I guess everything wasn't fine.  When the doc took an extra close look at the films he saw that some of Dylan's nerves at the base of his spinal cord are "low" and positioned wrong and need to be moved so that as he grows they won't get pulled and cause nerve damage.  Unfortunately the nerves that are "low" are the nerves that affect bowel and bladder control and walking.  In order for Dylan to have the best chance at walking and being continent this surgery will need to be done.  The doc told us that he wants to given Dylan the best chance at a "normal" life and if any other child had the same problem he would recommend the surgery.  I am just so upset with myself because I thought that everything was fine and  kept complaining about going to the appointment.  I am very overwhelmed with everything that is happening in my life right now and I just hate the thought of my baby having to endure another surgery.  It will be scheduled for sometime in April, I will post an update (I hope that it will not be scheduled on Hailey's birthday).

While I was having all of these emotions (frustration, anger, sadness, etc...) I read a poem that was posted on my friend Jessica's blog(whose son Tanner also has WHS) and I had to post it here to share with my family and friends.  It brought me to tears and reminded me why I was chosen for this special path in life.

Ode to Special Moms

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation.  As He observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew.  Forrest, Marjorie, daughter, patron saint, Cecilia."

"Rudledge, Carrie, twins, patron saint, give her Gerard.  He's used to profanity."

Finally, he passes a name to an angel and smiles.  "Give her a handicapped child."

The angel is curious.  "Why this one God?  She's so happy."

"Exactly," says God.  "Could I give a handicapped child to a mother who does not know laughter?  That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.  Once the shock and resentment wear off, she'll handle it."

"I watched her today.  She has that feeling of self and independence that is so rare and so necessary in a mother.  You see, the child I'm going to given her has his own world.  She has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter.  I can fix that.  This one is perfect.  She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"

God nods.  "If she can't separate herself from the child occasionally, she'll never survive.  Yes, here is a woman whom I will bless with a child less than perfect.  She doesn't realize it yet, but she is to be envied.  She will never take for granted a 'spoken word.'  She will never consider a 'step' ordinary.  When her child says 'Momma' for the first time, she will be present at a miracle and know it!  When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.  I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them.  She will never be alone.  I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."
"And what about her patron saint?"  asks the angel, pen poised midair.

God smiles.  "A mirror will suffice."

- Erma Bombeck, May, 1980

Here are some cute videos to end this post of my little miracle:  

Wednesday, February 3, 2010

Too Much Stress

I am very stressed out.  Yesterday @ 4:30p.m. as I was driving home from picking up Hailey from school we were in a car accident.  I was stopped at a red light when a drunk driver rear ended/sideswiped us.  I was told by witnesses that she had been driving on the wrong side of the street and swerving all over the place and was going about 40mph when she hit us and never once put on her brakes.  I never saw it coming, I was looking forward for the light to change and BAM!!!  She was completely drunk, even had beer bottles in her purse on the front seat.  The police told me that she had multiple DUI's on her record and arrested her at the scene.  Her car was totalled but she appeared to be uninjured.  Thank God that the kids are o.k., they were safely in their car seats and were unharmed, just a little scared.  Hailey kept saying to the police "there was a big bump."  My back and neck are sore but that's it.  I am very thankful that I drive a big truck because that is what saved us.  The police told me that if I had been in anything smaller we probably would have been killed.  So scary!  But now I have to deal with insurance companies, lawyers, etc... and I really don't have time for any of this.  I have a splitting headache just thinking about it all.   It's hard to tell from the pictures but I think the rear axel is bent, because she hit the rear tire pretty good and it isn't very straight anymore.  I am so sad, I love that truck. 

I am also very frustrated because Dylan has an appointment with the Neurosurgeon tomorrow for him to go over with me the report of his MRI he had in October.  The MRI was to rule out a tethered spinal cord and I have a copy of the report and it clearly states that "the spinal cord is unremarkable in appearance."  Now I know that I am not a Neurosurgeon but that sounds like it's I even showed the report to his Ped. and she said that everything looked fine.  I asked his office staff if he would please be able to speak with me over the phone and he of course will NOT.  I have to come into his office.  I know it's because he just wants to bill my insurance company.  I am sure his office staff thinks I am some crazy person but all I want is a little respect and understanding.  I clearly told them that if Dylan had a medical reason to be seen by a Neurosurgeon then of course I would bring him in, but if everything is find then why am I going to waste my time. All I wanted was a call from the doctor saying why he wanted to see us.  Dylan has seen every specialist in the book and some of those appointments have been completely unnecessary.  This doctor is an hour away from us and has a horrible bedside manner.  I would see someone else but it's not that easy to find a Pediatric Neurosurgeon.  ARGGGGGG!!!

Well there is my complaining for today.  I just had to get it all out.