Our Journey

We decided to create a blog so we could share with family and friends about "our journey". Our son Noah is 4 years old and he is the constant light in our world. He was born with a rare genetic disorder called Rubinstein Taybi Syndrome.. Life has not always been easy but Noah has taught us how to be courageous. We are so proud of his accomplishments the past four years. He is beautiful, funny, courageous and strong. We feel so blessed God has chosen us to raise Noah.. We also hope that new parents receiving an RTS diagnosis will find comfort in our words. Nicholas is the perfect addition to our family. God has once again blessed us with a amazing, beautiful little boy. We are so comforted knowing that Noah now has a little brother. Life is beautiful having these two angels in our world.

Friday, December 26, 2008

We Are In New York

Merry Christmas to everyone and a happy New Year.I have come to the conclusion that I am no good at this blogging stuff .. Ha ha... I find it so hard to keep up with it. I will keep trying to get better though.. Noah, Tom and I are in New York for the holidays visiting my parents. We flew in on Christmas Eve after some delays and yucky traffic. It is freezing here to us Florida people. There is actually some snow on the ground so Tom and I were excited to expose Noah to it. Well, the excitement was all ours because Noah wanted nothing to do with the snow or the cold. We bundled him up and took him out sledding on Christmas Day. He didn't even crack a smile the whole time. When I get some pictures ready I will post them so everyone can see how much Noah hates to be cold. He is a Florida boy who enjoys the warm weather and swimming for sure. Today we took him to a place called Bear Mountain to ride a carousel and go on a walk. Of course he enjoyed the carousel because he was spinning. Anything that spins amuses Noah a lot. Tom will go skiing tomorrow with my Dad. Unfortunately I will have to sit this one out being pregnant and all. I absolutely love to ski so I'm a little jealous. Sunday Tom and I may go into New York City if is warm enough. I can't deal with the city in the freezing cold. That is about all that is happening here. Best wishes to everyone during this holiday season..

Tuesday, December 16, 2008

AM I DOING ENOUGH??

Thank God for my blog today because I really need to write out my feelings. I am having a hard day today. I am having the "Am I doing enough feelings of guilt". I know most of you know what I am talking about. That nagging feeling that just won't quit as much as you would like it to. I wonder if I am being a good enough mom to Noah? Am I doing enough to help him developmentally? Am I working hard enough with him on his walking? Do we need more therapy? Is there a therapy I am missing? What about his speech? Am I doing enough to motivate him? These feelings really get to me because I feel like Noah's development is resting on my shoulders. I know logically that this is not true. Most of it is up to Noah. When he is ready to do things. I like to call it "On Noah's time". But is that just masking my true feelings? Sometimes I really do feel that it is all up to me. I wonder how I am going to spread my time with a new baby? Will I be able to give him the attention he so desperately needs? As you can tell my head is spinning today. Once in a while the guilt really eats me alive. I know tomorrow will be a new day with new feelings but right now this sucks. Thanks for reading.. I try to keep my posts pretty positive but once in a while this happens..

Friday, December 5, 2008

I am so Proud ...

I just had to post an update on my angel. This weekend we are going to start the PECS system with Noah to help him communicate. (Thanks for all the information Jacqui.) I am really excited about this because Noah and I are very frustrated trying to figure out his needs. I feel so bad when he is trying to tell me something and I have no clue what it is. With the new baby coming, Noah really needs to be able to communicate. Wednesday during speech therapy Noah did great with all the picture cards. I was soooo proud of him. His ST would hold up two or three cards and ask Noah for a specific one, low and behold he got every single one right. He was so polite that day too. Everything she asked him for he would hand over. Then his ST mentioned that cognitively Noah is really maturing. It was kind of funny to think of Noah and the word "mature" in the same sentence. He is still my little baby.. Anyway, I was just so proud of him that day. I am also proud to announce that Noah took two steps without holding onto anything that same day. He is really coming along. We are working extremely hard on his balance lately. Just a little more Noah and you will be walking. I am so proud once again of my little man.. I am proud of all your little angels too.

Tuesday, December 2, 2008

Random Thoughts..

I have been horrible about keeping up with this blog. Our digital camera actually broke so I am unable to take pictures and that keeps me from blogging. I like to post pictures of how cute my little man is becoming. Tom and I are getting a camera this weekend so I will be able to post more often. I am beginning to feel better as far as the morning sickness goes. Now I am just extremely fatigue all the time. I am so tempted to drink a gallon of Starbucks coffee but instead I get boring smoothee's (thanks to my mom). Yes my mom has been visiting for the past couple of weeks and keeping me on track. Thanks mom... But I am still tempted for that Starbucks. I had some testing done last Wednesday (nuchal transluncey) SP?? It is a blood test and sonogram that tests for a increased risk of Down Syndrome or Trisomy 18. I have to admit it was a hard decision whether or not to have the test done. Since I turned 35 in November, there is all kinds of extra testing they want to do. I explained to the DR that it wouldn't change anything for me with this pregnancy. I thought of Noah the whole time, to help ease my anxiety. Noah is such a blessing and I know this child will be too. I have decided that faith is the only thing that will get me through this pregnancy. Faith will also be the babies name if it is a girl.. It just seems like the perfect name for this baby. It is very hard to have a child with special needs as your first born because now I can't imagine having a "typical" child. Kind of like when I was pregnant with Noah, I couldn't imagine having a child with special needs. I just know that God is in control and he knows what I need. Well these are my random thoughts for the day. Thanks for reading them.

Monday, November 24, 2008

Now That I am 2!!!!!!!!


Since I turned two I wanted to write about all the fun stuff I'm doing. I am trying really hard to walk. I like to push around my push toy and anything else that moves. Ma Ma and Da Da hold the top of my shirt to balance me and I can walk really fast. My Nana bought me a sit and spin toy and I figured out how to use it right away. It is so fun!!! I like to spin around and wait for everyone to clap for me. I love to clap. I clap after every bite of food I take or whenever I think someone is watching me. I love music too!! Mama is thinking about taking me to "mommy and me" music lessons. Everyone says I'm a natural. I am still babbling a lot too. Ma ma got me extra speech therapy during the week to help me. Yucky more therapy.. I love to go to the park and swing for hours. I also love my water therapy. Oh and I'm going to be a big brother this year. I don't know how I feel about that sharing mama and dada yet. I bet it will be really cool though. Well I have a lot more playing to do today. I will tell Mama to keep up with my blog more. Love, Noah

Tuesday, November 11, 2008

Update on my little man.

I have been reminded by my loving sister that I have not posted on this blog in quite some time. It has been difficult to get my mind focused to do much of anything lately but I will try to continue keeping up with it. I wanted to post a update on Noah and how he is doing with everything. We are working so hard with Noah on his balance and confidence. He is constantly pushing anything he can find in the house and walking with it. His favorite thing to push is his highchair. He started to walk all along the walls now while holding on somewhat. I am seeing a lot of improvement in his balance when he is standing. If he doesn't realize he is standing alone he is fine. But the minute he realizes he is not holding onto anything he loses his balance. I am sure the aqua therapy is helping him a great deal. We have also been working with using a lot more signing. He understands what I am signing but he has yet to master most signs. He does use "more" consistently and "all done". I think one day a light bulb will go off and he will understand if he uses these signs he will get what he wants faster. All of his two year appts went well. Tomorrow he will see the eye DR to get his dilated exam. I am hoping all will go well with that. Noah is still babbling a lot. He says "ma ma" a lot and a few times we heard him say "da da". He uses a few different constanants such as ha ha, ba ba, ra ra, wa wa and some others I can't think of right now. Oh and he will say "up" for his Uncle Micheal. So all in all Noah is doing great. I am starting to feel a little better although I am seriously tired all the time. But there is a light at the end of the tunnel..

Wednesday, November 5, 2008

HE DID IT.....

Today is a very exciting day. I am so proud of our country for electing Barack Obama. Way to go... Now its time for our country to get back on track..

Saturday, November 1, 2008

Noah drummin.....






Sorry about the layout of my pirate post .. I didn't realize it was going to look so weird... Here are the pictures of the drums I promised..

Noah the Pirate






Yes Noah was a pirate this year and he was so darn cute. I think the pirate costume suited him perfectly just like his pumpkin costume did last year. Daddy took Noah trick or treating with his cousins and he had a blast. Although he didn't get to eat any candy thanks to mommy. I stayed home feeling yucky like usual but I did get to see lots of pictures. While Noah was at my sister Heather's house last night he showed everyone that he is going to be a musician someday. Everyone was amazed at Noah playing the drums. You would have to see it to believe it. Noah is like a natural sitting on the chair playing the drums. I'm going to include some pictures of that as well. They did take some video of Noah playing that I will upload tomorrow. It is truly one of the most amazing Noah moments. I am so proud of our little man and his love for music.. Enjoy.

Noah and the pumpkin





I apologize to all my family who enjoys reading my blog. I have really been slacking where my blog is concerned. Don't worry I will get energy again sometime soon. I did have a little spurt of energy when I carved this pumpkin with Noah on Halloween. Noah was so fascinated watching me carve the pumpkin. Here are some pictures of Noah and Rocky.. I'm going to post some pictures of Noah in his Halloween costume too..

Tuesday, October 28, 2008

Noah and Ma Ma




OK these pictures were taken without me knowing it but I thought they were funny. I have been posting about my morning sickness (well all day sickness) so I thought I would share just how bad it is. I feel so guilty because I have been laying around a lot and too tired to do just about anything. I am still taking Noah to therapy 5 times a week and working on walking with him but that's all I can get done in a day. I wish I would stop feeling so guilty and just accept that I am sick. It is so hard to take care of a toddler and go through this at the same time. For all the moms that did how the heck did you manage??

Sunday, October 26, 2008

Pumpkin Patch






Today Daddy took Noah to the pumpkin patch. Mommy stayed home because I was and still am feeling yucky. I was really disappointed because it was a gorgeous day today. Tommy told me Noah was really tired and was not in the mood to have his picture taken. I think you will be able to tell by some of the pictures. Maybe he was feeling my pain??

Thursday, October 23, 2008

Where's Noah??






I haven't blogged for quite a few days and most of you probably know why. I haven't been able to muster up the energy to do anything to tell you the truth. Then I just couldn't really think of anything to blog about either. But today I caught Noah in his room playing peek a boo by himself.. Yes, underneath Tommy's big huge bathrobe is Noah.. It was so cute, he didn't know I was in the room until I caught the picture of him smiling.. He always finds new and creative things to play peek a boo with.

Saturday, October 18, 2008

Noah at dinnertime with Seth






Last night while Noah was finishing his dinner his cousins stopped by to say hi.. Here are some really funny pictures of Noah and his cousin Seth.. In one of the pictures Noah is actually hugging Seth's head to say hi. It was so cute. Noah rested his head on Seth's head. They had fun playing for a few hours..

Wednesday, October 15, 2008

ENT APPT, THERAPIES ETC.


Today our little boy is 2 years old. I can't stop singing Happy Birthday to him over and over. I think he is starting to wonder what my problem is ha ha. We had his party on Sunday so today will just be Noah and I. I'm going to get him a little cupcake and sing to him again. For his birthday breakfast he had waffles and a sippy cup full of milk. Then off to physical and speech therapy. In speech therapy we discussed using pictures as a way to communicate for right now (avoid frustration) My speech therapist wasn't too keen on the idea and would rather concentrate on Noah vocalizing. Duh I would rather see Noah vocalize too but right now he is just babbling. I don't see anything wrong with trying something new. We are also concentrating on signing but Noah isn't too interested in it yet..He does know how to sign "milk", "more", and "all done" sometimes. I want to do whatever I can to help Noah communicate even if it is a alternative choice. During physical therapy Noah did fabulous. I had posted about his anxiety a few months ago but now his confidence has taken control. His pt says he has the skills to walk now he just has to want to. "You can do it Noah." Some other news... I forgot to post about Noah's ENT appt. He had a hearing test done and ear tubes checked. He passed his hearing test with flying colors. I was so happy because prior to the ear tubes they suspected some hearing loss but this time all was good. Happy Birthday Again Sweet Boy.. Ma Ma and Da Da love you so much.. More than the sun, moon and the stars..

Sunday, October 12, 2008

Noah's 2nd Birthday Party.






Today we had Noah's 2nd birthday party. His official birthday isn't until Wednesday but we wanted to have it on a weekend. I honestly can't believe my baby is almost 2. Where has the time gone? We are so proud of Noah and everything he has learned in these past two years. Noah really showed off his "walking" skills to everyone today. Whenever he decided to walk around with his push toy, he made sure everyone was looking at him. Then of course we all clapped for him because 'the king" must be clapped for. We had family and friends over today to help us celebrate the big day. I made a homemade oreo cake that turned out to be a hit. This morning I cried because the cake looked like it was going to collapse. I was so scared for everyone to try it. I even pretended like Tommy made it, until I heard that it was good. Noah was more interested in the wrapping paper and boxes than his toys. Oh well Mommy helped him open them anyway. Below are some pictures of Noah on his big day. The theme for the day was dinosaur's. Every night before I put Noah to bed I tell him "The Dinosaur Story". It was the perfect theme for my little guy.. Happy Almost Birthday My Sweet Noah. We love you so much.

Wednesday, October 8, 2008

Be Not Afraid

The past few days have been a little rough for me. I try to be strong for everyone around me so sometimes my fears get "tucked away". The past few days my feelings have been raw and overwhelming. I go through these periods from time to time. But what gets me through is knowing that I am never alone. Knowing that God is in control of my life. What a relief it is to know that my life is already planned by God and not me. I don't know how I would've made it through these past few years without him. I will never walk alone even through the darkest times. How comforting this thought is to me. Below is the song I listen to when I'm feeling fearful and anxious. It reminds me I don't need to be afraid. God's arms are always wrapped around me. For that I am so grateful.

You shall cross the barren desert,
but you shall not die of thirst.
You shall wander far in safety,
though you do not know the way.

You shall speak your words in foreign lands,
and all will understand,
You shall see the face of God and live.

Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.

If you pass through raging waters
in the sea, you shall not drown.
If you walk amidst the burning flames,
you shall not be harmed.

If you stand before the pow’r of hell
and death is at your side,
know that I am with you, through it all

Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.

Blessed are your poor,
for the Kingdom shall be theirs.
Blest are you that weep and mourn,
for one day you shall laugh.

And if wicked men insult and hate you, all because of Me,
blessed, blessed are you!

Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.

Monday, October 6, 2008

I Love Da Da




Noah is such a lucky little guy to have such a great Daddy. He loves Noah with all of his heart and shows me over and over why I wanted to have a child with him in the first place. One of Noah's favorite things to do with Daddy is read books and play his drum. (Tommy is actually quite the musician.) I think Noah inherited that from his Daddy. He also likes to grab Tommy's beard and pull off his glasses. I love to watch the two of them together. Here is a letter Noah wrote to his Da Da..

Dear Da Da,
I bet you don't know I dream about you at night when you turn out my light
I bet you don't know how happy I am when you read me books or play with your beard
I bet you don't know how much I like when you give me baths and laugh when I splash
I bet you don't know I love to see you come home from work. I miss you so much
I bet you don't know how I love when you teach me things and play with me. It's so fun
I bet you don't know how much I love your hugs and kisses
I bet you don't know that you are the best Daddy in the world. I love you so much for all you do for me and ma ma.. Love, Noah.

Saturday, October 4, 2008

He Claps

Drum roll please for a small victory in our house. We have been trying to teach Noah how to clap which seems like a eternity. Yesterday Noah and I had just finished watching a movie so I started saying "ma ma claps her hands.". Then I would clap and I then said "Noah clap your hands" and just like that he started clapping. I was so excited I picked Noah up and starting yelling "yeah Noah clapped his hands.". He looked at me like mom what is the big deal?? But it is a huge deal to Tom and I. What may seem like a "small" accomplishment to others is like a "huge" victory to us. I often wonder if and when we have another baby (if the baby is "typically" developing) will I get this excited? I'm pretty sure I will because that is all I know. I only know how to jump up and down like a crazy person when a milestone is finally met. I only know how to work and work and work to help my child reach a milestone. I only know how to keep going when I feel like I want to give up. And I only know this beautifully unique world that Noah has led me into.

Friday, October 3, 2008

Creative Play




Noah has a playroom full of toys that any kid would be excited to see. But he really doesn't go in there much because he has better, more exciting things to do. There is nothing more exciting to Noah than the dishwasher and the refrigerator. As soon as he hears me open the dishwasher within seconds he is in the kitchen. It doesn't matter if he is all the way across the house, he will speed crawl just to make it there before I close the dishwasher. He loves to put his hands on it when I turn it on to hear the vibration. The refrigerator comes in close second though. Whenever I open it there is Noah at my feet staring in. He then likes to close it for me. He laughs hysterically when he closes it. I am glad there are two things in this house that keep him excited. Here are some pictures of Noah and his two favorite past times. Amazing how the little things really make him laugh.

Tuesday, September 30, 2008

I'll Stand By You.


Since Noah was a very small infant I have been singing two special songs to him. I sing these songs to him all through out the day. At least once a day I ask Noah "do you want to dance?" and right away he crawls into our computer room. He knows that I am going to play our favorite song and dance with him. This time is so special to me because Noah cuddles into my neck and everything is beautiful in that moment. His whole face and eyes light up when we dance. I sing the same song to him before he takes a nap and before he goes to bed at night. I will never stop singing this to you baby. Here are the words to our song..

OH, WHY YOU LOOK SO SAD?
TEARS ARE IN YOUR EYES
COME ON AND COME TO ME NOW
DON'T BE ASHAMED TO CRY
LET ME SEE YOU THROUGH
'CAUSE I'VE SEEN THE DARK SIDE TOO
WHEN THE NIGHT FALLS ON YOU
YOU DON'T KNOW WHAT TO DO
NOTHING YOU CONFESS
COULD MAKE ME LOVE YOU LESS

I'LL STAND BY YOU
I'LL STAND BY YOU
WON'T LET NOBODY HURT YOU
I'LL STAND BY YOU

SO IF YOU'RE MAD, GET MAD
DON'T HOLD IT ALL INSIDE
COME ON AND TALK TO ME NOW
HEY, WHAT YOU GOT TO HIDE?
I GET ANGRY TOO
WELL I'M A LOT LIKE YOU
WHEN YOU'RE STANDING AT THE CROSSROADS
AND DON'T KNOW WHICH PATH TO CHOOSE
LET ME COME ALONG
'CAUSE EVEN IF YOU'RE WRONG

I'LL STAND BY YOU
I'LL STAND BY YOU
WON'T LET NOBODY HURT YOU
I'LL STAND BY YOU
TAKE ME IN, INTO YOUR DARKEST HOUR
AND I'LL NEVER DESERT YOU
I'LL STAND BY YOU

AND WHEN...
WHEN THE NIGHT FALLS ON YOU, BABY
YOU'RE FEELING ALL ALONE
YOU WON'T BE ON YOUR OWN

I'LL STAND BY YOU
I'LL STAND BY YOU
WON'T LET NOBODY HURT YOU

I'LL STAND BY YOU
TAKE ME IN, INTO YOUR DARKEST HOUR
AND I'LL NEVER DESERT YOU
I'LL STAND BY YOU
I'LL STAND BY YOU
WON'T LET NOBODY HURT YOU
I'LL STAND BY YOU
WON'T LET NOBODY HURT YOU
I'LL STAND BY YOU


Monday, September 29, 2008

My Big Boy




Today Noah had aquatic therapy and his therapist mentioned how much stronger he is. For the past few months Noah has been having a very hard time at therapy (dealing with a lot of anxiety.) But the past week or so it's like Noah is a new baby. I can tell his confidence is soaring and he is so excited to be on his feet. Instead of pulling up to his push toy and screaming his head off, he pulls up and practically runs through the house with it. He is walking so much better holding onto my hands also. I am noticing that he is so much more motivated to walk around and be on his feet. Today Noah's therapist said "It won't be long until Noah is walking." I know he will do it when he is ready though. He is such a big boy and we are so proud of his new found courage lately. Way to go sweet boy..

Saturday, September 27, 2008

Noah and Rocky




Here are some pictures of Noah and our dog Rocky. Noah crawls around after Rocky for a good part of the day. I have to admit our dog is so patient and loving when it comes to Noah and any kids that are around. He will be 10 in November and he was our baby before Noah was born (along with our other dog we had to give away Jake.) Here is a little note from Noah to Rocky.

Dear Rocky dog,
Thank you for letting me pull on your ears. You don't even get mad at me.
Thank you for letting me pull on your gums when you are trying to eat your dog food. Sometimes you even share your dog food with me.
Thank you for letting me crawl all over you . You even let me pull to stand up next to you.
Thank you for letting me wake you up when you are trying to sleep. Even then you don't get mad at me.. I love you Rocky. Love, Noah.

Another funny note about Rocky and Noah. The other night Tommy was giving Rocky a bath in the bathroom tub. Noah crawled in and pulled to stand so he could watch bath time. Every time Tommy filled up the cup to pour on Rocky, Noah would scream and get upset. We came to the conclusion that Noah thought Tommy was hurting Rocky by pouring water on him. It was so cute. Noah was protecting Rocky instead of the other way around..