Skylers MRI results!! - are back!

darrylswifeskylersmom wrote: hi as some of u may remember skyler had a Mri nov 1/04 well after a long wait the results are in to our dr.. we had a appt to she her today...
here goes I'll try my best to discribe it.. skyler has been diagnosised with lobar holoprosencephaly..which is where there is parts of the brain that didnt completely seperate and his basal ganglia is to close together..( sorry its hard to explain and the while matter in his brain is diminishing( im not sure on exactly sure what this all means... but the most serious of all is skyler does not have septum pellucidum .. and as the dr put it his brain.. corpus callosum (around the brain is abnormal) and disfigured... we have no idea what intails for skyler in the next years.. he may need surgery as he has inlarged ventricles in his brain... But Drs are holding off for the time being...drs say he will most likeley have learning disabilties and have siezers(SP) but we just have to sit and watch .. It was hard news to get but finally i feel like I know whats wrong with my son.. drs also say
1 in 4 chance this will happen again if we have more children.. and 33% chance if im pg again the baby could die .. from a more serve case of holoprosecephaly...
well thats all for now ... sorry that its soo confusing but i thought i would try to explain it best I could.. thanks everyone for your support thru the last few weeks...
1 more thing drs were amazed that skyler looks normal on the outside... I looked at the dr and said thats cause God blessed us with a miracle... we are lucky parents to have a son like skyler!

MommyToAshley replied: I am sorry you are going through this, I can only imagine how hard it was to hear all of this in the doctor's office today.

The last part of your post really touched me, you really are blessed. I love hearing about Skyler and the pictures in your siggy just warm my heart. He is such a beautiful baby and he looks so happy!!!

Please keep us posted on how he is doing, and we're always here if you need to talk.

Kirstenmumof3 replied: I'm so sorry your family has to go through this. I hope you get all the answers you need and that the treatment plan they offer will be helpful.

You have such a beautiful little boy, so happy. What a sweetheart!

Josie83 replied: I'm sorry you're going through this Jenn. We're alwas here for you! xx

MomToMany replied: Wow, that's a lot to take in. At least you know what is wrong now, even though there's not much you can do. We are here for you .

And he is a miracle that God blessed yor family with .

gr33n3y3z replied: I'm sorry to hear that your family has to go through this but now you know what is wrong and maybe the Dr will come up with a treatment along the way. Drs have come a long way with many treatments for many things.
But like you said God blessed you with a miracle. ((((( HUGZ)))))

amynicole21 replied: That's such difficult news to hear, but I imagine that it is somewhat comforting to finally know what you are dealing with. Sounds to me like Skylar has already beaten the odds, so I wouldn't be one bit surprised if he does it again and comes out of this without any ill effects. I'm keeping you in my thoughts, and sending you lots of hugs

ctymom replied: I'm so sorry. I wish I knew what to say.

I wanted to give you a website of an organization that you could maybe connect for information. http://www.rarediseases.org Maybe they have resources to help answer your questions and find some support.

My thoughts and prayers out to you and your family.

Pamela

TANNER'S MOM replied: Well I just wanted to say that I love you and Skyler, And I know that God will see you thru. When I read this it brought a tear to my eye, Not because of the medical words and the awful disease, that is bad enough. But because of your last comment, b/c of how much you love your son. You a very wonderful Mom and person. You don't see the medical terms when you look at him, all you see are his beautiful eyes and his soul. I hope that if life were to deal me your hand, I could be as strong and wonderful as you.

I am glad to know a mother like you!

DansMom replied: Skyler is blessed too---with loving, caring parents like you. That is a lot of difficult information from the MRI, and you are handling it so bravely. Skyler is bound to thrive with the love and support you give him. I cried when I read the end of your post. If all children were loved the way you love Skyler, the world would be a better place.

A&A'smommy replied: ((((BIG HUGS)))) I'm amazed at how well your handling this!! Your son is a Godsend, and I agree he is blessed with wonderful parents who love him and give him the best care possible!!!

darrylswifeskylersmom replied: thanks everyone for your support I read yur posts and It made me cry!
you are all very special ppl!!
thanks! I love u all!!

favre4fan replied: You are an amazing mom!! At least you know now what is going on now and can better cope. Skyler is blessed to have parents like you.Lots of P&PTS to you!!

Boys r us replied: Awe, you know, I'm at work and crying..and it's because your post touched me so much! Your last comment about God blessing you with a miracle is so touching and beautiful! I think that God knew Skylar would be in good hands with parents as wonderful and loving as you!

My2Beauties replied: OMg I am sitting here teary-eyed at work now you guys!!! Skyler is adorable and he is so lucky to have wonderful parents like you, God has certainly blessed you with a beautiful baby! I know all this has to be so hard on you guys and my thoughts and prayers are with you, i think Skyler looks like a fighter and I think he will overcome odds! Your post really touched me! There are people out there who don't realize how lucky they have it and even with your news you still looked on the positive side of things. Bless you and Skyler!

kimberley replied: ((((huge hugs))))) sweetie! God did bless you with a miracle and i will continue to pray for your family! stay strong and have faith.

Maddie&EthansMom replied: You are right...You are so lucky to have a son like Skyler, but hun he is lucky to have parents like you!! I'm glad you found out what is going on. I am praying for your little family. He will be just fine.