We saw Dr Kayser, who is a geneticist, this week and received a diagnosis we are comfortable with for now. We will have additional conversations with our pediatrician and seek wisdom from the Lord as we move forward.
He diagnosed her with hemihypertrophy.
The following is directly from a website that he directed us to (for the complete article if you are all that interested you can read it at healthline. com). I just copied the highlights that pertain to Rylee.
Hemihypertrophy, more correctly termed hemihyperplasia, is defined as the enlargement of one side of the body or part of the body.
Hemihypertrophy is characterized by unequal (asymmetric) growth of the limb. The size difference can involve only a specific part of the body such as a finger (called simple hemihypertrophy).*
The cause and exact mechanism of isolated hemihypertrophy is not known. The asymmetry occurs most likely as a result of an increase in the rate of cell growth, or unregulated cell growth.
Isolated hemihypertrophy occurs in about one in 86,000 live births.
As with other overgrowth syndromes, there is an increased risk for childhood cancers in people with isolated hemihypertrophy (about 6%), particularly cancers of the kidney (Wilms tumor, 3% of individuals), adrenals, and liver.
A protocol to screen for childhood cancers has been proposed, which includes abdominal ultrasound every three months until age six, every six months until puberty, and careful medical follow-up of patients into adulthood. Surgical intervention is appropriate if cancers are detected. Monitoring of serum alpha fetoprotein levels may also be useful as a marker of hepatic tumors.
Hemihypertrophy does not alter lifespan, although complications from associated abnormalities such as childhood cancer and mental retardation** can cause problems. Asymmetry of the limbs can interfere with their proper function and cause pain. Insecurities due to disfigurement are possible and can be addressed through support groups or therapy.***
*Since only Rylee's arm is affected she has what is considered simple or isolated hemihypertrophy.
**mental retardation is NOT a concern in Rylee's case.
***they forgot to list prayer...
So what's next? We will begin to have ultrasounds and blood work every three months as recommended to monitor the increased risk for childhood cancers as stated in the article. But to us a 6% increase is not something to be overly concerned about. That means there is a 94% chance that all will be fine--I'll take those odds anyday!
That being said, the important thing is that our God is bigger than percentages. He is bigger than odds. He is bigger than this diagnosis. He has a plan and a purpose for Rylee's life and has formed her exactly the way she is suppose to be formed. I believe with all my heart God has a special purpose for Rylee's life (as with all of us). I look forward to seeing how God will touch our precious girl and grow her into a beautiful woman who knows Him, loves Him, and follows Him with all of her heart.
For you created Rylee's inmost being; you knit her together in my womb. I praise you because Rylee is fearfully and wonderfully made, your works are wonderful, I know that full well. Rylee's form was not hidden from you when she was made in the secret place. When she was woven together in the depths of the earth, your eyes saw her unformed body. All the days ordained for her were written in your book before one of them came to be. How precious to me are your thoughts, O God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand.
Amen
Thursday, February 26, 2009
Wednesday, February 18, 2009
More pitcures of my treasure
Wearing Pawpaw's hat at the lake house
Playing with Pawpaw and Brocco.
He loves Baby Rylee more than I could imagine.
Having fun at the mall.
OK--I could upload hundreds of pictures but thats all for now. I love this guy!
Pictures of my treasure
He is cautious of rides but if Daddy's doing it he will too!
Lovin' on MeeMaw while she's trying to sew.
Scary picture of me but he's lovin' on me with a irrisistable smile (maybe a little cheesy but I love it)!
He asked to have this picture taken which rarely happens.
My treasure
Life has been a little testing at our house over the past couple of weeks. Many times I have thought I just don't have what it takes to raise our son. A wise person who I go to often for advise and encouragement gave me a picture that I hope I never loose site of.
Make sure you are raising your children because they are your treasure not your trophy. Too often I am concerned about what other people think. I get caught up in how I look as a parent as a result of how Gunner is acting. This wise person, who happens to be my sister, encouraged me to think of Gunner as my treasure. It changes your perspective pretty quick. Of course I want Gunner to be well behaved and do what mommy and daddy ask him to do, especially when we are in public, but the fact is that's not always going to happen. It's a process that we are in the middle of and if I make it about me he will never get it and probably end up resenting me in the long run.
Gunner loves life. He loves his Mommy, Daddy and Baby. He loves his Meemaw and Pawpaw. He loves his cousins. He loves his friends. He loves going to church. He loves playing inside, outside, it don't matter--he loves to play but not by himself, he wants to share that joy with others. He loves to get donuts on Saturday mornings with his Daddy. It's a double bonus if its nice enough outside to go play mini golf. He loves going to the lake house. He loves Brocco (his Pawpaw's black lab). He loves to ride his bike, look for puddles and go down hills. Honestly there aren't too many things he doesn't like--well maybe eating and getting his picture taken but I think that's just because he is required to sit still!
Gunner is my treasure. I love him more than life itsself and look forward to seeing what God has in store for this little man.
OK--I was going to post some pictures of him but it is taking For Ever and I just don't have time to wait. I'll try again later. Right now my treasure needs some attention!
Make sure you are raising your children because they are your treasure not your trophy. Too often I am concerned about what other people think. I get caught up in how I look as a parent as a result of how Gunner is acting. This wise person, who happens to be my sister, encouraged me to think of Gunner as my treasure. It changes your perspective pretty quick. Of course I want Gunner to be well behaved and do what mommy and daddy ask him to do, especially when we are in public, but the fact is that's not always going to happen. It's a process that we are in the middle of and if I make it about me he will never get it and probably end up resenting me in the long run.
Gunner loves life. He loves his Mommy, Daddy and Baby. He loves his Meemaw and Pawpaw. He loves his cousins. He loves his friends. He loves going to church. He loves playing inside, outside, it don't matter--he loves to play but not by himself, he wants to share that joy with others. He loves to get donuts on Saturday mornings with his Daddy. It's a double bonus if its nice enough outside to go play mini golf. He loves going to the lake house. He loves Brocco (his Pawpaw's black lab). He loves to ride his bike, look for puddles and go down hills. Honestly there aren't too many things he doesn't like--well maybe eating and getting his picture taken but I think that's just because he is required to sit still!
Gunner is my treasure. I love him more than life itsself and look forward to seeing what God has in store for this little man.
OK--I was going to post some pictures of him but it is taking For Ever and I just don't have time to wait. I'll try again later. Right now my treasure needs some attention!
MRI Results and the next step on this journey
Well I had meant to update this much sooner but life has not given me the chance to sit down at the computer for more than a few minutes with both hands available. You see generally when I am on facebook or blog stalking I am feeding Rylee so I only have one arm/hand available OR I'm on my phone and haven't figured out how to post to my blog--I'm sure it can be done but that will come at a later date.
Rylee's MRI was Feb 9th. Dr Raley finally called us on Thursday. He called our home phone so he had the pleasure of talking to Gunner on the phone! We only have our home phone for 911 and our alarm system and rarely get calls we want to take SO we let Gunner answer the home phone and talk to the sales men/women. They usually hang up pretty quick.
I was feeding Rylee and could hear Gunner's side of the conversation and figured out pretty quick that this person was not going to hang up so I told Gunner to get his Daddy. When Ed answered he started chuckling--it was Dr Raley the perfect person to chat with Gunner on the phone.
The MRI came back NORMAL! Praise the Lord! It was so normal that the radiologist asked Dr Raley why the MRI was ordered. So what does that mean? Well her arteries and veins are totally normal in her arm so there is no concern with her heart. Did I say Praise the Lord? We are now looking at a genetic abnormality meaning that for some reason her arm developed differently. We will go see a geneticist in a couple of weeks and try to get answers on how it will continue to grow and what impact it might have on her ability to use the arm long term.
As of now she is using the arm and grasping things with her hand so it seems her mobility and use won't be affected.
God is good. He has his hand on Rylee and we continue to trust in him.
Here's a picture of our sweet girl in her hospital gown. She's playing with her toys not having a clue what momma and daddy are getting ready to put her through. I'm glad she won't remember this day.
Rylee's MRI was Feb 9th. Dr Raley finally called us on Thursday. He called our home phone so he had the pleasure of talking to Gunner on the phone! We only have our home phone for 911 and our alarm system and rarely get calls we want to take SO we let Gunner answer the home phone and talk to the sales men/women. They usually hang up pretty quick.
I was feeding Rylee and could hear Gunner's side of the conversation and figured out pretty quick that this person was not going to hang up so I told Gunner to get his Daddy. When Ed answered he started chuckling--it was Dr Raley the perfect person to chat with Gunner on the phone.
The MRI came back NORMAL! Praise the Lord! It was so normal that the radiologist asked Dr Raley why the MRI was ordered. So what does that mean? Well her arteries and veins are totally normal in her arm so there is no concern with her heart. Did I say Praise the Lord? We are now looking at a genetic abnormality meaning that for some reason her arm developed differently. We will go see a geneticist in a couple of weeks and try to get answers on how it will continue to grow and what impact it might have on her ability to use the arm long term.
As of now she is using the arm and grasping things with her hand so it seems her mobility and use won't be affected.
God is good. He has his hand on Rylee and we continue to trust in him.
Here's a picture of our sweet girl in her hospital gown. She's playing with her toys not having a clue what momma and daddy are getting ready to put her through. I'm glad she won't remember this day.
Monday, February 9, 2009
MRI
Well today was the big day!
We reported to St Francis Children's Hospital at this morning for Rylee's MRI. (The Children's Hospital is an impressive facility.) Everything went well. We just had to deal with the normal stresses here and there.
She was a trooper when they started the IV. Just cried enough to let them know she was hurt--her hand hurt and I think her feelings were hurt a little too. Ed conveniently had to go to the bathroom right when they came to start the IV!
We were told the MRI would take about 30-45 minutes. Unfortunately it took a lot longer then we thought. She was away from us for about 2 1/2 hours. We were told it took longer to 'get her on the table' than they expected. This could be because they actually had to do general anesthetic rather than just a sedative in her IV. So we had the tube down the throat and everything. Apparently they also ended up doing more scans once they got started. The waiting was tough on Daddy!
Recovery was tough on Momma. She was crying, wouldn't eat, and coughing like crazy. They also couldn't get a good pulse-ox read. Thankfully she looked good so they were not overly concerned about that. But the machines kept beeping and they kept having to mess with her feet to readjust trying to get a better read. Recovery lasted about an hour. She did decide a little sugar water sounded good and took about an ounce of that finally!
We have not heard from Dr Raley. Hoping to hear from him in the morning. I will update when we hear something.
Thank you for your prayers. The extra scan has me a little concerned but I am trusting in the Lord with my little girl. Look at that beautiful smile--love her!
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