Soundfield is set up in school

Morgans soundfield system was all charged and set up for school on Tue. Mrs Derstine said that Morgan didn't miss a beat. Its a small box(maybe the size of a brick) and it sits on the counter behind Morgan and Mrs Derstine wears the Microphone around her neck or clipped on her shirt. She says its working fantastic. All the children seem to like it as well. They want a magic ear like Morgan. Morgan is all smiles when she gets to show something new to the class. They all got to put their ear up to the amplifier box and listen and feel the vibrations from it. We are so happy that everything is still going great. Heather also has been having all great comments about Morgan. Today they worked on things that are the same and different. Keep up the good work!

A little something to make you smile!

On the way to school yesterday I was telling her that her Pop Pop was going to be picking her up, I said "Morgan Pop Pop's picking you up from school today." Morgan quickly responded,"Mommy, look at my lips, you should say Pop Pop IS picking me up at school today,Now you try. So, of course I have to repeat it correctly only to get a GOOD JOB MOMMY from Morgan. Thearpy therapy therapy! Amazing CI kiddos!

Only a Pop Pop would let their Granddaughter ride the fake deer! Morgan just loves her Pop Pop. They played all afternoon together.

Bilateral?

Morgan had her regular 6 month check up with Dr Germiller last week. Everything looked good as far as her tube in her left ear, and her implant site. I asked Dr. Germiller his thoughts on going bilateral with Morgan now that the new Nucleus 5 is out. Its a new smaller and thinner implant. Morgan will be able to get the new device in 2010. Dr. Germiller said the new internal device is very nice, its much smaller and there is no drilling into the skull, just a small amount of shaving would need to be done to ensure it lays flat on the head. This is very exciting. He already had kids lined up to get it this coming week. He suggested we go to the University of Penn to have a test done on Morgan to see if there was inner ear damage to her left her from her first surgery. When and implant is done there is a risk of inner ear damage, if you just have one implant this isn't an issue because you still have the other ear that is not damaged. If Morgan had damage done to her left ear, and then went bilateral the risk would also be there that damage would be done to the inner ear of her right ear. If that were to happen she would most likely have balance issues for the rest of her life. If she doesn't have any inner ear damage to her left ear then it won't be an issue for her right ear if it were to get damaged. Your balance comes from your inner ear and you only need one good inner ear to sustain your balance. Dr. Germiller is having this balance testing done this coming fall/winter. He suggested that since Morgan has done so well with just one, that if she was his child he doesn't think he would get the second implant if there is inner ear damage in her left ear. Balance issues for the rest of her life is much worse than having to wait to get reimplanted in her left ear is a malfunction were to ever happen. I love that he puts himself in your shoes and gives you his honest opinions about things. He really makes you think about all the options before you make a decision. We just love Dr. Germiller!

Genetics

Well we have known for awhile now that Morgan is deaf due to genetics and the connexin gene, but I have been really curious as to what connexin genes Ben and I really have that we passed on to her. So I decided to do some digging and get some testing done. I first asked St Christophers for a copy of Morgan's genetic test and went from there. I didn't really understand it so I call CHOP and asked the genetic counselor to help me understand it. Turns out that Morgan has one connexin 26 gene which is a mutation in a gene, and she has connexin 30 which is a deletion in a gene. So I figured oh she must have gotten one from me and one from Ben. The geneticist explained it to me that she actually could have just gotten one gene from either Ben or I and the other one just spontaneously happened. After hearing that I was even more anxious to get tested. Having one of the gene spontaneously happen would make the chances of having another deaf child decrease greatly. However that was not the case. We got our results back on Thur Sept 3. I have the connexin 26 mutation and Ben has the connexin 30 deletion. So we are back to square one with it being a 25% chance at having another deaf child.(a 1 in 4 chance) The geneticist also continued to tell me some of the options that we had before a baby was even born. One being that we could have an amino done or a CVS (Chorionic villus sampling) which is done at 10-13 weeks after conceiving naturally. They do a biopsy of the placenta and test that for those particular genes. Both of these were out of the questions because Ben and I would never not have a child just because they were deaf. However the other test they can do is called Preimplantion Genetics Diagnosis (PGD). This is used along with in-vetro and they test the cells of the eggs or embryos. Here is a link www.reproductivegenetics.com/pgd.html. We have done alot of thinking about this and have put religion and all other factors out of the picture except that fact that I would do anything to ensure that another child wouldn't have to go through everything Morgan has gone through and will go through. Don't get me wrong I wouldn't change Morgan for the world, we have been so blessed to have her and learn so much from her. So we are going to go for a consultation to really find out what its all about, the cost, the risks, and if it is something we are interested in. Can't hurt to listen and learn about it. We have an appointment at the University of Penn on Sept 22. So much to learn and think about.

Where to begin??? First day of school 2009

So much has been going on that I just haven't posted in awhile...I have to admit that I am not the best as post right away when something happens...I promise I am going to try and get better at that. Well fist things first. Morgan had her first day at her new school, Pennview Christian School. We love her teacher Mrs Derstine, she has been GREAT with Morgan and is willing to learn all about Morgan's Implant and whatever she needs to do to help her. We couldn't ask for a better teacher. Heather is Morgan's Hearing support and comes into the classroom to observe Morgan to make sure she is staying on track with her listening and speech. We don't want her to fall behind, because its just going to be that much harder for her to try and catch up again. Heather has also been great in educating the teachers that are working with Morgan and even going above and beyond and introducing herself to other staff in the school and the nurse. This was a tough decision for Ben and I. But when it came down to it we know Morgan has it in her and is a very smart little girl, and we need to give her the best opportunity to hear and learn from "typical hear peers". We really miss our family at Clarke but we know they are always there for us. Her first day of school was on Sept 1st. She goes on Tuesdays and Thursdays in the morning. I am lucky enough to be able to drop her off at school and her Grandmom picks her up and they get to have a special afternoon together! Here is a picture of her on her first day of school. We got VERY VERY good reports home from Mrs Derstine and Heather on Morgan's first day of school. I think she really surprised them with how well she did. She made me so proud I was in tears. The letters home had things in it such as Morgan was able to follow the teachers directions from a 6ft-10ft distance(without speech reading cues), and without difficulty, such as "trace your hand","wash your hands", "put away the crayons". Morgan had and excellent first day at school. She did an excellent job of sitting for story with a great listening posture and attentively. (ps. Thanks Sherri and Sara) She did a fantastic job. Those were some comments from her hearing support teacher. Along with some other great notes from Mrs. Derstine. She is already making new friends and is loving her new school.