"And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." 2 Corinthians 12:9

Saturday, August 9, 2008

Change of plans

Well it has been a full week. Noelle was scheduled to see a developmental specialist in Oct, his earliest new patient apt. Well they had a cancellation on Wednesday at 10:30 so they called and we got in three months early. Praise the Lord! He is doing some genetic testing to confirm his diagnosis Rubinstein-Taybi Syndrome.
It seems that she does not have any of the major health problems just some physical symptoms. It is a big praise that we got in to see him because he recommended not to do Noelle's eye surgery right now. So we have canceled it until she is closer to one.
This Syndrome can be very bad but as of now she is doing really well the doctor was very impressed with her development. He wants us to keep doing what we are doing add some speech therapy in a few months and maybe some physical therapy too. He is going to do a brain scan in a few months and we will do the eye surgery hopefully in January or February.
to be very honest it has been a hard week for me just trying to wrap my head around everything and feeling very overwhelmed and unable to deal with all of this. God has given me a peace that has washed over me and now I feel more at ease with everything.
It is hard because my parents are having a hard time accepting all of this. Every time I talk to my mom she tells me some horrible thing about the syndrome. It is hard.
God is my anchor. My strength. My ever present help in trouble.

7 comments:

Glamorous Life of a House Wife said...

Dani - if there is anyone on this earth that can be the perfect mommy to sweet little Noelle, it is you. You have devoted your life to your children, and I know that no matter what ever comes up with her Syndrome, no matter big or small, you will handle it with grace and leave us astounded. Praise God for His Sovereign plan in our lives, and how He will use this and her, for His ultimate glory. Know that I am praying for her, you and your sweet little family. What a little love she is!!

Terri H-E said...

Hi, Dani. Your daughter is beautiful and she looks a lot like mine. My 5 year old has RTS and has no serious health issues. Please be aware that most people with RTS have a clinical diagnosis only - based on features and not a conclusive blood test. Feel free to check out my blog to see a happy, healthy girl with Rubinstein-Taybi Syndrome. Good luck!

Jessica mommy to Alex/ RTS said...

Hi Dani,
My son Alex also has RTS, he is almost a year old. Feel free to check out my blog, or email anytime you want. There are a lot of RTS mommies who are ready to be there for you when you need them.
Your little Noelle is absolutely beautiful!
japruitt99@msn.com

Ma Na said...

Hello Dani,
My son, Carter (28 mos), has Rubinstein-Taybi Syndrome. Please don't listen to all the negatives people will tell you. All of our children are different and special in their own way. When and if you need info please check out www.specialfriends.org. I wish you and your family all the best!

Glamorous Life of a House Wife said...

YES, DO IT AND LET ME KNOW HOW IT TURNS OUT! I have the recipe link saved, but I have never attempted it. I want to, though, so how about you do it first and be the guinea pig. ;)

Pleasant Drive said...

Praise God from whom ALL blessing flow, even those that don't immediately manifest themselves. You're such an asset and advocate for your kiddos!

Myssie said...

Hi Dani-
My son, William (2 years old) has a clinical diagnoses of RTS. Check out our blog. I am glad that I found your blog! Noelle is a cutie!