Today we met Dr.Cohan and went over everything with him about Geneva.He went through the mris and cat scan that Cleveland Clinic had done and pointed things out to us to help us understand what is going on with her.He showed us in her ventracles how they have determined her as having cerebral palsey,and also showed us that she was a preemie at birth.I had my suspisions.They tell you that your due date can be two weeks off all the time,and when they induced they had me at 37 weeks,apparently it was more like 35 weeks if not a lil less.I have to say I was impressed on how much a mri can tell you.He took the tim to make a joke out of the situation by showing us her eye balls.It was kind of wierd.Than of course he showed us how the brain is laying on top of her spinal cord.(the chiari)And said it looks tight but wants to get a more in depth view of how tight at this point.
After going over the mri we went over more questions about her health and he measured her head size.Surprisingly he didn't say much about it.But when examining her left foot he noted that it was tight again and saw how she was still dragging it a little and that it was still turning out some.He saw the marks on her back and questions teethered cord due to the foot issues and her complaining about her back.
So after 2 hours of going over everything he offered to contact Dr.Di to have him go forward with the surgery but i expressed to him that I did not want to return to himafter all the games he has played that I would feel more comfortable going through with him.He showed us many things with books and models explaining what he will need to do and what could be going on with her.
Dr.Cohan and his office tried to get Geneva set up for a mri for tomorrow or Friday but was not successful.So they have her on for a full mri on Monday ,but she is on the list if someone cancels to be moved up.The office wanted to put her on the schedule for surgery for next Tuesday.But as I explained to them if he has Fridays opened it would be better with having my other children and if we could keep it for the 8th than everyone who got their day off for her original surgery would still be able to make it.So we are tentaviley scheduled for the 8th.Depending on the mri considering she is right now on the border.@7:15 am so we will have to arrive before 6 am.Immediately after the mri we are suppossed to return to his office to go over everything and confirm what needs to be done.I was happy to see him actually take the time and see the videos of Geneva holding her head and screaming and seeing how much pain she is in.But mad at myself for not being able to explain things better to him.I feel as though I forgot so much.I am mentally and physically exhausted and have my bp up again.I pray that someone will cancel mri for Friday so we can get this done faster and I will have my mother by my side through this.And get the answers we need.I ask everyone to keep Geneva in their prayers.Thank You!!
Wednesday, September 29, 2010
Saturday, September 18, 2010
I have started this blog to help keep family memebers and friends updated on what is going on with Geneva.I am new to this so please bare with me.In January 2010 Geneva was diagnosed with mild Cerebral Palsey,and Chiari Malformation.This was diagnosed after a MRI was done due to issues Geneva was having with meeting her milestones and walking.I have to say the Cerebral palsey did not shock me,but I had no clue what Chiari was nor how it would affect our lives.Apparently Geneva was at 7mm when they found her Chiari so she was at the borderline to be sent to see a nuerosurgeon,but decided to watch her to determine if she needed to be seen or not.Following the MRI Geneva started her botox injections to help her maintain walking.The first 4 months worked perfect.Genevas Physical Therapist,Nuerologist and I were very happy.So when we started the 2nd series of botox we expected the same results.Unfortunately the results only lasted a couple weeks.At that point I was encouraged to take Geneva to see her Orthopedic Surgeon.During this visit it was made very clear that is was time for Geneva to meet with a Nuerosurgeon.I remeber thinking, for real?So we walked out of his office with a appointment in less than a months time.
We met with Dr.Di in July,by the time we had met him we had already undergone our 2nd MRI which showed Genevas Chiari was compressing and Dr.Di had already talked with Genevas nuerologist,and orthopedic surgeon and they had came to the conclusion that Geneva need to have the decompression surgery done for her Chiari as soon as possible.At our visit Dr.Di explained why they felt it was important and explained to me all the risk that were involved.He also reminded me that it would in no way help any of the Cerebral Palsey issues.He walked out telling me we would talk again before the surgery and left me with his nurse scheduling the surgery.The nurse explained to me that his schedule was pretty full and scheduled out till next March but since the dr wanted her in asap she put us in for October 8,2010.I have to say I was confused,that was the soonest??Apparently Chiari not being known well enough also leaves the issue of not having enough drs that know how to treat it.This really bothered me.
Since meeting with Dr.Di,Geneva has had issues that we believe are cause by the Chiari.She is having problems sleeping,staying up most nights and days screaming and crying in pain.Even taking me to get her more meds to help with the pain.It breaks my heart.She has had more issues begin with her eating.Geneva has always had issues gaining weight.But now she has become very limited on what she can or will eat.The ot workers has explained to me that her senses in her mouth are not awake and with that being a major factor she is not able to use her back teeth to chew,move the food with her tongue nor even bite through a fry with her front teeth.Another newer issue that really scares me is she recently started having pain in her back.Its not everyday but she starts screaming and holding her back.I did make her nuerosurgeon and nuerologist aware of everything.Nuerologist I got to see while Nuerosurgeon was off on vacation.The nuerologist feels that she needs another mri done of her back to check for teethered cord.So this was scheduled for October 1,2010.But when Nuerosurgeon heard what all was going on he wanted to move her surgery to September 14,2010.But when I explained the mri was scheduled and that we believed it would be best to get those answers first we were able to leave the surgery date for October 8,2010.
Now Nuerosurgeon is wanting Geneva seen by a developmental study dr through Cleveland Clinic before her surgery than after so we can know how much progress the surgery made.I would be ok with this but to me I believe there are enough people involved inGenevas life right now that can inform him of everything.Between her physical therapist,occupational therapist,speech pathologist,early intervention,and early start nurse.So right now I am waiting to hear back from him.Wish us luck!!
We met with Dr.Di in July,by the time we had met him we had already undergone our 2nd MRI which showed Genevas Chiari was compressing and Dr.Di had already talked with Genevas nuerologist,and orthopedic surgeon and they had came to the conclusion that Geneva need to have the decompression surgery done for her Chiari as soon as possible.At our visit Dr.Di explained why they felt it was important and explained to me all the risk that were involved.He also reminded me that it would in no way help any of the Cerebral Palsey issues.He walked out telling me we would talk again before the surgery and left me with his nurse scheduling the surgery.The nurse explained to me that his schedule was pretty full and scheduled out till next March but since the dr wanted her in asap she put us in for October 8,2010.I have to say I was confused,that was the soonest??Apparently Chiari not being known well enough also leaves the issue of not having enough drs that know how to treat it.This really bothered me.
Since meeting with Dr.Di,Geneva has had issues that we believe are cause by the Chiari.She is having problems sleeping,staying up most nights and days screaming and crying in pain.Even taking me to get her more meds to help with the pain.It breaks my heart.She has had more issues begin with her eating.Geneva has always had issues gaining weight.But now she has become very limited on what she can or will eat.The ot workers has explained to me that her senses in her mouth are not awake and with that being a major factor she is not able to use her back teeth to chew,move the food with her tongue nor even bite through a fry with her front teeth.Another newer issue that really scares me is she recently started having pain in her back.Its not everyday but she starts screaming and holding her back.I did make her nuerosurgeon and nuerologist aware of everything.Nuerologist I got to see while Nuerosurgeon was off on vacation.The nuerologist feels that she needs another mri done of her back to check for teethered cord.So this was scheduled for October 1,2010.But when Nuerosurgeon heard what all was going on he wanted to move her surgery to September 14,2010.But when I explained the mri was scheduled and that we believed it would be best to get those answers first we were able to leave the surgery date for October 8,2010.
Now Nuerosurgeon is wanting Geneva seen by a developmental study dr through Cleveland Clinic before her surgery than after so we can know how much progress the surgery made.I would be ok with this but to me I believe there are enough people involved inGenevas life right now that can inform him of everything.Between her physical therapist,occupational therapist,speech pathologist,early intervention,and early start nurse.So right now I am waiting to hear back from him.Wish us luck!!
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