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 =)
Subscribe to:
Post Comments (Atom)
1 comment:
no apology necessary for the long update... We all think about and pray for Oliver and your whole family so much. It is good to hear the POSITIVE news, and we rejoice with you!
All our love,
Mike, Martha, and Charlie
Post a Comment