We talked with Oliver's neurologist today about the results of the chromosome analysis. The study found that he has an anomaly on chromosome 7 and his X chromosome has an extra arm. What this all means I have no clue. One of the many next steps is to see a geneticist (all three of us). They will tell us what this means for Oliver. John and I also have to get blood work to see if this is something that we are carriers of or if it was just some random thing. The neurologist found a university that is researching this right now so John and I will not have to pay for our genetic tests. They are very expensive so I guess this is a good thing.
Oliver also had his gastric emptying test yesterday, which was a huge disaster. They said if he were to vomit at all during the 90 minute test we would have to stop. I told them he most likely would, he usually does. Forty minutes in he barfed, very predictable. The woman said next time they will have to insert a G-tube. I informed her there would not be a next time. Yes I was a little crabby, but I can't see little Oliver go through that again. I should have asked for a refund! Wonder if it would have worked =) So, that's that. Still waiting to catch a break sometime soon.
Tuesday, October 28, 2008
Sunday, October 26, 2008
Walk in the forest and the greats!!
A few weeks ago we went to visit grandpa and grandma in Hoffman. While I was there I took a walk in the woods. I call it "The Forest!"
Then we came home and my great grandparents from California came to see us. We also celebrated Grandpa Dave's birthday. I helped make his cake and blow out the candles.
Oliver loved being held by great grandpa. I don't know when I have seen him smile so many times in such a short period. He really loves his great grandparents! Mommy also tried to take a cute picture of me holding Oliver because in most of our pictures Oliver is crying. Nice try mommy, as you can see it didn't work.
Wednesday, October 22, 2008
Overwhelmed!
Another day of appointments over, whew. A member of the family service team came today to set up, or at least start setting up therapies for Oliver. She was so great! We have another appointment with her next week where a team will come to evaluate Oliver, this is all done at our house! It is so great that we have services like that, and they are so supportive.
This afternoon we had a GI appointment because we thought Oliver had GERD. Now I don't really know if he does. He was a very confusing doctor but luckily he had a student with him so he would talk to me and I would look to her as a translator. What I got from it was him mumbling Oliver doesn't have GERD he probably has ------ (something I didn't understand)and is most likely going to need surgery. So we had X-rays today, another test next week (UGI), and the following week a Gastric emptying test. I am usually better at asking them to explain things in more detail, but as the title reads, John and I are overwhelmed with all of the news.
Adina is taking this all so well. She always wants to come to the doctor with Oliver, probably because the toys are so cool! Today she sat across the receptionist for about ten minutes and told her a long story about "Oliber go see doctor wobison." She thinks all of the doctors are named Dr. Robinson. Most of what she says is in her own language, but some things we can pick out. I don't think the receptionist got much work done with Adina in the office. Adina will hold Oliver's hand and say, "It's okay Oliber, I here." Kids are amazing!
So thats the news for now. This whole experience has been such a roller coaster of emotions.
This afternoon we had a GI appointment because we thought Oliver had GERD. Now I don't really know if he does. He was a very confusing doctor but luckily he had a student with him so he would talk to me and I would look to her as a translator. What I got from it was him mumbling Oliver doesn't have GERD he probably has ------ (something I didn't understand)and is most likely going to need surgery. So we had X-rays today, another test next week (UGI), and the following week a Gastric emptying test. I am usually better at asking them to explain things in more detail, but as the title reads, John and I are overwhelmed with all of the news.
Adina is taking this all so well. She always wants to come to the doctor with Oliver, probably because the toys are so cool! Today she sat across the receptionist for about ten minutes and told her a long story about "Oliber go see doctor wobison." She thinks all of the doctors are named Dr. Robinson. Most of what she says is in her own language, but some things we can pick out. I don't think the receptionist got much work done with Adina in the office. Adina will hold Oliver's hand and say, "It's okay Oliber, I here." Kids are amazing!
So thats the news for now. This whole experience has been such a roller coaster of emotions.
Monday, October 20, 2008
Some good news!
Finally some good news!
Oliver had an EEG last week to determine if he is having any seizures, which is very common with what Oliver has. His EEG results came back with normal results and so far no seizures. Of course they can start later, but for now we are clear! It was so nice to get good news. The doc is still confident his vision will develop slowly so we are holding onto that. It does seem as though he is tracking a bit more and reaching for toys!! Amazing how excited we get for the smallest things, I think we under celebrated them with Adina.
We are still waiting on the blood results that will tell us if there are any syndromes associated with Oliver's ACC (agenesis of corpus collasum). Often times there are, but not always. Hopefully it will be more good news. We will let you know when we find out, but be patient (grandma) as it may take a few weeks =).
We have an appointment Wednesday to set up therapies and also that day, an appointment with a GI specialist. Oliver has GERD on top of the other stuff, I feel as though this is all never ending.
Today the doctor gave us some new medication to help Oliver sleep (mommy and daddy too). We only get a few hours a night and usually in a rocking chair, hopefully this will help. Our nights are like having a colicky newborn baby who screams for hours, now take that times 10. I guess this is also common with his diagnosis. We are about to try the meds! Wish us luck!
We will update you with news. Happy sleeping, I hope!
Oliver had an EEG last week to determine if he is having any seizures, which is very common with what Oliver has. His EEG results came back with normal results and so far no seizures. Of course they can start later, but for now we are clear! It was so nice to get good news. The doc is still confident his vision will develop slowly so we are holding onto that. It does seem as though he is tracking a bit more and reaching for toys!! Amazing how excited we get for the smallest things, I think we under celebrated them with Adina.
We are still waiting on the blood results that will tell us if there are any syndromes associated with Oliver's ACC (agenesis of corpus collasum). Often times there are, but not always. Hopefully it will be more good news. We will let you know when we find out, but be patient (grandma) as it may take a few weeks =).
We have an appointment Wednesday to set up therapies and also that day, an appointment with a GI specialist. Oliver has GERD on top of the other stuff, I feel as though this is all never ending.
Today the doctor gave us some new medication to help Oliver sleep (mommy and daddy too). We only get a few hours a night and usually in a rocking chair, hopefully this will help. Our nights are like having a colicky newborn baby who screams for hours, now take that times 10. I guess this is also common with his diagnosis. We are about to try the meds! Wish us luck!
We will update you with news. Happy sleeping, I hope!
Friday, October 10, 2008
Oliver Update
Hi everybody, I feel that I should give a quick update as to how little Oliver is and the news that we have. On average we will be having about 1-3 appts. per week for the next few months. It is overwhelming but we are trying to make order of the new schedule. We met with a pediatric neurologist last week and he was wonderful at clarifying everything for us. He will be following Oliver for years to come. (Thanks again Sandy for finding him for us!) Anyway here is the recent news-
The part of the brain that we thought was partially there, the Corpus Collasum is actually not there at all. It just failed to develop for some reason. Also, the Hippocampus, which is sort of the memory box of the brain is also very underdeveloped as well as the whole outer portion of the brain. So his brain is smaller than average which also means his head is and will be smaller than average. The neurologist said that with these findings it is likely that we are facing moderate to severe developmental delays and challenges. Naturally this was very difficult news to receive, but now we are focusing on what we can do to help Oliver reach the fullest of his potential. We are getting connected with the school district who has a birth to three program paid for by the state. They will provide speech, physical, and occupational therapy and they come right to our house! Tax dollars at work! The neurologist also stated that he feels that Oliver can see, he just isn't yet making the right connections in the brain. He is very positive that this will develop just at a much slower rate than most. For that news I wanted to jump out of my seat and say YIPPEE! Thought the Doc might be a bit frightened so I restrained. We are going to grab at every positive thing we can. Next for appts is meeting with the school to come up with a treatment plan, EEG to determine if Oliver is having seizures which is very common with this, and waiting on many lab results to see if Oliver has any accompanying syndromes often associated with this. The labs may also tell us if this is something we could potentially pass to future children or not and how great that percentage is (hopefully very small). I do believe that I hit everything but will continue to update on this blog when we find out more in the next few weeks. We have an appt. on the 20th and we will find all the results from the EEG and hopefully blood as well.
We have had a lot of questions from people wondering if his brain is something that will develop in the future, a question we had as well. Unfortunately it will not, but to us little Oliver is absolutely perfect in every way.
John and I are continuing with our studies. We have had a lot of help with the kids in order to do this. Because of the fact Oliver may be having seizures or will in the future we were told that he needed one on one care. We have the best daycare in the world!! and she has a great way with Oliver but, if he did ever need to be rushed in he needs to be one on one. Grandpa Dave is coming every week in between his very busy church schedule to help us every Thursday. This has taken a HUGE weight off of our shoulders! (We thought we were going to have to hire somebody) Oliver loves being with Grandpa, I came home from school on Thursday and Oliver and Grandpa were fast asleep in the chair. Anybody that has watched Oliver knows that this is not the easiest task in the world.
Sorry this was much longer than I had anticipated. We are continuously amazed with all of the support we have received. Words cannot explain how much it has lifted us both and it always comes at the perfect moment. Thank you SO much! I will try to keep the next update shorter =)
The part of the brain that we thought was partially there, the Corpus Collasum is actually not there at all. It just failed to develop for some reason. Also, the Hippocampus, which is sort of the memory box of the brain is also very underdeveloped as well as the whole outer portion of the brain. So his brain is smaller than average which also means his head is and will be smaller than average. The neurologist said that with these findings it is likely that we are facing moderate to severe developmental delays and challenges. Naturally this was very difficult news to receive, but now we are focusing on what we can do to help Oliver reach the fullest of his potential. We are getting connected with the school district who has a birth to three program paid for by the state. They will provide speech, physical, and occupational therapy and they come right to our house! Tax dollars at work! The neurologist also stated that he feels that Oliver can see, he just isn't yet making the right connections in the brain. He is very positive that this will develop just at a much slower rate than most. For that news I wanted to jump out of my seat and say YIPPEE! Thought the Doc might be a bit frightened so I restrained. We are going to grab at every positive thing we can. Next for appts is meeting with the school to come up with a treatment plan, EEG to determine if Oliver is having seizures which is very common with this, and waiting on many lab results to see if Oliver has any accompanying syndromes often associated with this. The labs may also tell us if this is something we could potentially pass to future children or not and how great that percentage is (hopefully very small). I do believe that I hit everything but will continue to update on this blog when we find out more in the next few weeks. We have an appt. on the 20th and we will find all the results from the EEG and hopefully blood as well.
We have had a lot of questions from people wondering if his brain is something that will develop in the future, a question we had as well. Unfortunately it will not, but to us little Oliver is absolutely perfect in every way.
John and I are continuing with our studies. We have had a lot of help with the kids in order to do this. Because of the fact Oliver may be having seizures or will in the future we were told that he needed one on one care. We have the best daycare in the world!! and she has a great way with Oliver but, if he did ever need to be rushed in he needs to be one on one. Grandpa Dave is coming every week in between his very busy church schedule to help us every Thursday. This has taken a HUGE weight off of our shoulders! (We thought we were going to have to hire somebody) Oliver loves being with Grandpa, I came home from school on Thursday and Oliver and Grandpa were fast asleep in the chair. Anybody that has watched Oliver knows that this is not the easiest task in the world.
Sorry this was much longer than I had anticipated. We are continuously amazed with all of the support we have received. Words cannot explain how much it has lifted us both and it always comes at the perfect moment. Thank you SO much! I will try to keep the next update shorter =)
Wednesday, October 8, 2008
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