Yesterdays appointment

Hey everyone, Thank you for the continual prayers! we need them so much. yesterday we met with the pediatric neurosurgeon. My doctor warned me before we went to see her that she did not have the best bed side manners, well I thought she did… I actually liked her the best. She was very matter of fact and informative about what was going on( she also said she liked us because we did research and knew what we were talking about)The doctor said most people go in there not knowing practically anything about the situation! I was pretty shocked! I mean I feel so useless the only thing I can do is get my self informed on everything possible so that I’m ready for the outcome.

My specialist OB said that she THINKS  it’s most likely aqueductal stenosis ( not 100% though)… Which is actually the best form of hydrocephalus because it rarely damages the brain!! also with aqueductal stenosis later on in life they can do an ETV which would ultimately mean he can live a shunt free life.( ETV is endoscopic third ventriculostomy… try saying that 5 times fast!) an ETV is where they basically drill a hole where the obstruction is causing the fluid to flow on its own where it should.( you have to be a perfect candidate for that though )

anyhoo the rest of the appointment went well she commended me for refusing to do the mri! she said basically its a waste of time and money because she will not be able to tell anything until the baby is born. Even when people opt to do the Amnio or mri she said its usually because they want to see whats causing it so they can decide if they want to terminate the pregnancy… ( excuse me while I vomit) She said that even then its ridiculously hard to tell what is happening, and that nothing will really change the way she handles things when the baby is born. so everything is a waiting game…. we also wont know if he has developmental issues until he starts reaching milestones… I’m almost happy about that because each time he does reach a milestone like lifting his head or rolling over it will be so special to us!

It’s weird but Praise God for this little boy and his hydrocephalus. If this didn’t happen I wouldn’t know that I could love someone or appreciate them  this much. God has a plan and I know he has one for Jonah. People tell me to not lose my faith( mostly men! they don’t know how it feels to have a baby grow in you) , and I WONT! I will be mad at God if I lose my boy but isn’t that understandable? that doesn’t mean i will stay mad because I know in my heart God has a purpose for everything and he will be there with us the whole way!

anyhoo that’s it for today!—–Kelsey

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3 Responses to Yesterdays appointment

  1. Kelsey you are such a strong wonderful person. I enjoy reading the updates that Mark post. I pray for your family and little Jonah all the time. God does have a special place for parents like you guys and your unborn son. I am raising a six year old little boy with cerebral palsy and a lot of other medical problems and I know God has a purpose for him. He has made my husband and I stranger parents and stranger individuals. He was not supose to make it passed the time he was born. Doctors told us to just take him home and enjoy him. And now he is a beautiful six year old little boy who lightens a room with his smile. Never give up your faith. I know it will be hard and you will have a lot of questions as did we but God will get you through it. God Bless you and your family and your little boy Jonah.

  2. Kelsey this brought such tears of joy and hope to my eyes! I have been praying for you, Patrick and baby Jonah and willing you to hold onto your faiths. This has been a huge trial and scare I know, but the reports keep holding hope, especially this last one; even tho no guarantees are made. Thank you and Patrick for updates. See you Sat.

    • Thanks aunt Debbie! we appreciate the prayers so much. This kind of thing really puts into perspective whats important in this life ya know? my faith struggles here and there but I know deep down that God has something planned thats bigger than all of this. but sometimes its just hard to let go of the wheel and let God take control.

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