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, September 29, 2009
I have two boys that absolutely love the "Signing Times" dvd's. Noah will hear the beginning song and come as fast as he can into the living room. As soon as he sees the beginning when she says "Hi I'm Rachel" he cracks up laughing and then spins in circles on the floor. He signs half of the signs with the dvd but some of the signs bore him. He likes to sign "car" and "sleep" those are his favorites. Nicholas doesn't take his eyes off the t.v. He is going to be a signing baby. I sign with both of them all during the day. Nick looks at me like I'm crazy but he likes to watch me sign. Here are some cute pictures of the boys chillin with "Signing Times". Oh and I have to sing the theme song played at the end of the dvd a few times a day for Noah. He loves it.
Saturday, September 26, 2009
Today I had a few different moments that took my breath away. A few moments that made my heart leap with joy. I had posted earlier this week that Noah decided he wasn't going to walk after a fall he had. I don't think I posted that he fell and hit the back of his head at water therapy a week or so ago. I had to take him to the ER to make sure everything was ok. It ended up to be ok but I didn't think it had affected him because the anxiety didn't start until five or six days after the fall. But I know it was the fall that scared him. He has been walking holding onto the back of his head and it breaks my heart. So sad. Anyway the good news is that he took off again today. We decided to take him to Dave N Busters (It is a huge arcade attached to a restaurant) this is his absolute favorite place. He loves the lights, noise and crowds. Noah is so happy when he is in loud crowded places. He is such a little social butterfly at heart. As we were walking towards his favorite game he let go of my hand. He is so much more motivated when he is out of the house. That seems weird to me because I would think he would feel more comfortable at home. Nope out and about that's when he is the happiest. Another great moment today was my first real kiss on the cheek from Noah. Noah and I were reading books together and I asked him to give me a kiss. Right away he grabbed my cheek and slobbered all over me. I was so happy I asked for two more kisses. The third time came and he was over it. This was a moment that took my breath away. A moment some might take for granted. Then before Noah went to bed we watched "Signing Time's" together. Noah and I were sitting on the floor together signing and I asked him to rub my head. I laid my head in his lap and he played with my hair for ten minutes. How sweet is that? He does this often for me. I will say "Noah will you do my hair?" and he does. It is just too sweet. That is my rambling for the day. It was just a great day..
Tuesday, September 22, 2009
I am feeling completely frustrated and I'm not sure how to handle this. I'm hoping some of you can give me some advice. The past two days Noah is refusing to walk. If I try to get him to walk some where he squats his legs and leans backwards. I'm trying not to feel anxious about this because I know Noah senses when I am. It's just I have never been happier when I saw him take his first steps. It was such a long time coming and now I'm feeling sad. Today at therapy he did the same thing. He wouldn't walk and wouldn't do any of the stuff he normally does. I am wondering if any of you have any advice? I'm feeling at a loss and not sure what to do.
Monday, September 21, 2009
Tom comes up with some creative things to do with the kids when I'm not home. You remember the wheel barrel ride pictures don't you? So, I'm at the gym and when I get home Tom tells me he took the dog and kids for a walk. I think he meant Noah took the dog for a walk. Here is Tom's new invention in dog walking. Dog walks beside stroller while our child in the stroller holds the leash. Have to create fun somehow on those boring days. I do think these are cute pictures and Tom is a awesome Daddy to the kids.
Thursday, September 17, 2009
When I became Noah's mom a whole new world opened up to me. It was a world I knew existed but one that I never gave a whole lot of thought to. A world that has made me a better person with a stronger sense of self. A world that has forced me to look at life in a different light and be grateful for the things I have. Today I have been thinking about other mom's. Other mom's that have experienced grief and pain. I'm thinking of the mom who just got a diagnosis for their son or daughter and is grief stricken. I'm thinking of her and hoping her tears fade soon and her heart is full of joy again. I'm thinking of the mom who has to see her child for the first time in the NICU. I hope she feels strength and courage to make it through another day. I'm thinking of the mom who has to be strong to lift her child up every day because they can't walk. Her dedication amazes me. I'm thinking of the mom who carried their child for 9 months knowing that they would only have a few minutes of life. The beauty within her is overwhelming. I'm thinking of all the mom's who have given me hope and courage to be the best mom to Noah. I am so thankful to have all of you in my life. I'm so thankful for the gifts God has given me. I'm so thankful to Noah for softening my heart even more than it already was.
Sunday, September 13, 2009
Friday, September 11, 2009
Noah has been walking around today WITHOUT the bathrobe tie. He finally dropped it this afternoon. We just had him outside and he was walking so fast chasing the dog. He still likes for someone to walk behind him because he is a little wobbly. But not like a "new walker" wobbly. He looks like a pro until he loses his balance a little. I still can't believe it. We have waited so long for this and it makes our hearts so happy. Thank you for all the encouraging comments and congratulations for Noah. I love you all.
Thursday, September 10, 2009
You took my breath away today. Today for the first time I saw you walking by yourself. You walked ahead of me with that bathrobe tie hanging behind you. You looked like you had been walking for a year or so. A few times you practically ran but I had to slow you down. You walked all around the house like that for almost two hours. You still won't let go of that bathrobe tie but you are walking. Your Dad and I are so proud of you Noah. I admire the way you never give up. You are my inspiration and my love for you runs deeper than you will ever know. You have worked so hard and I know sooner than later the bathrobe tie will be a thing of the past. You walked today. I still can't believe it. I am so happy. I love you. You have taught me a huge life lesson Noah. Today you taught me that hope, determination, courage, strength, and love always win in the end. Today I felt joy. Today I celebrate. Love, mom
Tuesday, September 8, 2009
I feel like my past couple of posts have been like "Debbie Downer" if you watch Saturday night live you know what I'm talking about. So, I have decided to lighten up the mood with these cute pictures. Noah has found a new activity that he loves. Actually it was Tom's idea and Noah just decided he would like it. Yes, you are seeing correctly. Noah is riding in a wheel barrel. I promise you we really are not that bored all the time. ha ha. Also here are some cute pictures of Nicholas in his bumbo seat. I couldn't use the bumbo with Noah because his fat little thighs wouldn't fit in the seat. At least I will put it to good use with Nicholas.
Monday, September 7, 2009
I wanted to update on some of Noah's recent progress. We bought the "signing times" dvd's and they have really helped out Noah a lot with some signs. I bought volume 1-3 but we have only watched the first volume once a day for the last couple of weeks. Since watching this DVD I believe the concept of "signing" is really starting to click for him. He is not signing a lot of different signs but I know he understands what it means to sign now. He signs eat, more, all done, da da , up, on, . He is trying to master milk, drink, and he signed dog once with the DVD. He also is attempting to sign baby and car when the DVD is on. A couple of nights ago Noah said da da for the third time in his life and also signed da da at the same time. This was awesome because Tom and I were both in the room when he said it and then signed. I am really excited about this for Noah and I'm hoping that he continues to be motivated by signing. On another note today I saw first hand that Noah's balance is there for standing and walking by himself. I have been using that bathrobe trick with him for a couple of weeks now. Noah loves to watch me open and close the blinds. This is motivation for him to walk to the blinds and stand there.This morning while he was waiting for me to open the blind I slowly dropped my hand all the way to the end of the bathrobe tie. There was no support for him and he didn't even know it. He was standing beautifully and with no anxiety because he thought I was still holding it. This is really giving me hope. I know now he has the balance but we just have to work on his confidence in his abilities.
Saturday, September 5, 2009
Today for the first time in a very long time I wept about Noah's diagnosis. I know it has been 3 years and maybe some people think I should be over it. Well, I realized today that once in a while there will still be times I will cry and that's OK. I wept for all the times that Noah has been in pain and is unable to speak to tell me. I wept for the feelings of guilt that I feel when the feeling of not doing enough creeps its ugly head. I wept for the fact that my son is turning 3 and he is not yet walking independently. I wept for the thought that Noah may or may not be verbal. To not know is what kills me. I wept for the gut wrenching pain that I sometimes feel when thinking of what other "typical" 3 year old's are doing. I'm sorry but sometimes it still hurts. I know I am strong. I know I can handle my life but it's not easy. Nothing comes easy anymore. That is the reality. I get tired of pretending that I am always strong. I'm not. Sometimes there are still tears.
Wednesday, September 2, 2009
Poor Nick I feel bad that I haven't posted any pictures or a update on him lately. Yesterday he turned 3 months old already. I can't believe how time is flying these days. Everyday he looks like a different baby to me. When he was first born everyone said he looked like Tommy but now he is a spitting image of me. Whenever I look into his eyes I see myself. He looks so much like me when I was a baby. He is smiling and belly laughing all the time. In the middle of the night he likes to laugh out loud. I know he is sleeping when he does this so its pretty funny. I actually heard him a few nights ago and he made me crack up laughing at 4 am . Not a pretty time to be woken up but it was sweet. He is sleeping through the night until about 6 am then he goes back to bed until 8 or so. Not bad huh? He likes to stare at Noah when he is playing with such intent. Noah likes him some days but other days he tends to ignore him. Nick's favorite place is his swing but he is starting to like his bird bouncy chair a lot too. He hates tummy time but he is almost able to roll over. Today Noah and I were watching him on the floor and he almost made it over. Here are a couple of recent pictures of Nick.
Tuesday, September 1, 2009
Thought I would let everyone know how the evaluations for Noah went. Friday we had his PT and OT evaluation. Noah was in a mood because he had to get up really early that morning and he wasn't too thrilled. He would not do anything the evaluators asked him to do. I was kind of panicking at first when I saw him throw the basic shape puzzle instead of completing it. He just refused to really do much of anything. The therapists were really nice though and let me answer what he could and couldn't do at this point. They were understanding and said that most of the kids don't perform stuff like they do at home. So we left and that was that. Today we had the Speech Evaluation and it was the same scenario as the PT and OT evaluation. Noah was in the same mood and didn't want to do anything again. The ST was very informative and made me feel less anxious about the whole process. I did tell her my goals for Noah as far as Speech is concerned. In a couple of weeks we will have the IEP meeting. Before I sign anything I will go and observe the classroom and make sure it is what I want for Noah. I am thinking he will be going 3 days a week from 8-11 to start out. On another note I have tried a new technique with Noah and his walking. I have been using a bathrobe tie and slowly making it more slack. The fact that he is not walking independently is because of his extreme anxiety. I am full of new hope because every day the bathrobe gets longer and longer. Hopefully soon he will be walking with the bathrobe tie by himself. I can't wait for that day. But until it comes I will keep on trying and keep on going.. That is all I can really do..