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.

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.