I wanted to post this web site for anyone that reads Morgan's blog that has a child with an Implant or is considering getting one. You have to first sign up and be accepted but it is well worth it. Its on Yahoo.com and you need to sign up the the "cicircle group". You get to talk to other parent who are a major help. When I have a question about anything, and I mean anything I post it and its amazing how fast of a response you will get back from other parents wanting to help you. This web site has truly been a blessing for my family. We have learned so many thing that have help with Morgan and have been able to open the door to finding out what other people are using and doing with their implant. For example we were just able to find someone that makes barrettes that will attach to the coil of her implant so there is no way we can lose it if it falls off her ear. Without this group I would have never found information like that. The web site is www.cicircle.org
On Saturday Oct 25 Morgan took all of us to her school for her Fall Festival. Mommy got to my teacher, and a few of my friends. I got to paint a pumpkin, make a sand art necklace, play with spin art, decorate cookies, and I even won a fish! I got to wear my kitty cat costume, and I got my face painted to match! I had so much fun, and I know my Mommy, Daddy, Mom Mom, Pop Pop, Grandmom, Grandpop, and Aunt Cathernie had fun too!
On Friday Oct 24, 2008...Morgan had a follow up visit with her urologist at CHOP to check her kidney stone. Our appt was for 7 am and they told me to arrive 15 min early so we get there at 6:45 am...not a sole in the parking lot and all the lights off. They didn't open the doors till 7:10 am. Then Morgan got her ultra sound of her kidneys...she wasn't to thrilled waking up to that. After the ultrasound we had to go next door to see the dr. Sure enough CHOP didn't have my referral...BIG SURPRISE. So now I have to call the pediatrician and have the quickly do another referral so that we could be seen, otherwise they wouldn't see her. By the time they took us back we have been waiting for over and hour and a half, needless to say Morgan has almost had enough. Well we are finally seen, for about two min. The Dr. says the ultrasound looks the same and the stone is still in the same spot...we will do a follow up ultrasound and check in a year. I was like are you kidding me, all this waiting for that. But I should have known that. GRRRR
This is a little bit of what getting a cochlear implant looks like. Morgan was admitted at Children's Hospital of Philadelphia Chalfont outpatient center at 6 am on July 13. Due to unexpected procedures that came up for Dr. Germiller that morning he didn't start Morgan's surgery till almost 9 am. We got periodic updates from the nurse, but the waiting seemed like forever. We got to go back and see her around 1:30 pm. She did amazingly well with the surgery. She was very sleeply for the remainder of the day.
My Name is Morgan Keely. My Mom wanted to start this blog so we figured we better give you a little history about me.
I was born on May 31, 2006. I am an only child. I didn’t pass my newborn hearing screening before I left the hospital. I had to go the audiology dept at CHOP for a follow up. They did some hearing tests and I was diagnosed to have severe to profound hearing loss. Boy was Mommy sad when they told her this. Luckily my Poppop was with her. I really had one hard first year of life. When I was seen by my pediatrician they found a hole in my heart. I had to go back to CHOP but everything worked out fine there. I don’t have to go back anymore for that cause it closed on its own.
I was fitted for hearing aids when I was 2 months old. Nice teething toy is about all they were good for. The whistling noise they made made my parents go crazy. It was so hard to get me fitted cause I would grow out of them before they could get them back to my Mommy. Early intervention would come out to my house once a week but because I couldn’t hear at all it really didn’t help much except to frustrate my Mommy even more.
In the early part of summer I developed eczema. I itched so bad that when I scratched at night time I would make my sheets all bloody! It was horrible. My Mommy had such a hard time finding a Dr to help me. She wasn’t crazy about using steroids. She tried every lotion and remedy people would tell her about. So, now Poppop picks me up at daycare and takes me to this reflexologist for not only my skin but my hearing. She plays with my feet. I am also starting to learn sign language.
Now it is January of 2007. The hearing aids are still not working. We can’t find anyone that will even make them for me. CHOP is making my Mom crazy cause they are messing everything up. My ENT put tubes in my ears cause of fluid. He is now starting to talk about me getting a cochlear implant. Mommy and Daddy went to genetic counseling. They had to go to St Christopher’s because CHOP couldn’t see them for over a year. So, now we have finally found out I am deaf because of some genetic term. I think it is called something like conexin 26. Some mutated gene I guess. My skin is driving me crazy! Mommy is using a humidifier to see if this will help. Nothing seems to help this. So, now CHOP’s allergist can see me to see if she can figure out this skin issue. They find out the only thing I am mildly allergic to is shedding dogs. Long story short, my skin still doesn’t get better.
Spring is here and we are moving right along with getting approved for my implant. Sometimes I am so good at reading lips my Mom and Dad along with the rest of my family swears I can hear. I am very good at fooling them. Those darn hearing tests let them know the truth though. Its May 31, 2007 and it is my first birthday. I had a nice party with all my family there. We opened up our beach house in Rehoboth Beach, Delaware. Well, we went back to our CHOP ENT and he won’t do the surgery unless my skin is better. Finally after 8 months Dr Germiller pulls some strings and the CHOP dermatologist will see me. Finally someone finds some lotion that works and my skin starts to get better. Dr Germiller is finally satisfied with my skin and my surgery is to be on FRIDAY JULY 13th 2007! Not the UNLUCKY most people think Friday the 13ths are. I did so good! I was running around like my old self the next day. The bandages made me look worse than I really was. On July 30, 2007 I was activated. It scared me and I cried. So, now July 30th is my Mom mom’s birthday and my ears birthday. We share that day now. I get birthday presents on May 31st and also on July 30th. It’s fun.
So, now we think everything is smooth sailing. My skin is good, I have a new ear. The hole in my heart is closed. Well, surprise Mommy and Daddy. It is Saturday August 11th. I wake up feeling not so good with a fever. Mommy takes me to the Dr and they say it is probably viral. Well, I wake up from a short nap around 2PM and I now have a high fever and every little part on my body hurts so bad you can’t even touch me. Well, Mommy is scared I have that meningitis the ENT talked about. We go to the hospital and they find out I have a urinary tract infection. So I spend a couple days in the hospital. They run some tests and find out I have grade 2 reflux. When they did the CAT scan they find a shadow on my kidney. Guess what, at just 1 year old they find a 2mm kidney stone. Lucky me! So, they send me home and put me on a preventative medicine for the reflux. Two weeks later I am back in the hospital with a severe allergic reaction to bactrim. Now they send me back to CHOP to the allergist again to find out what kind of medicine I would be able to take if I get sick. I spent an entire day get stuck by needles and all kinds of nasty stuff.
I love to hear, I love to listen to the birds. I am doing really well. When my yearly evaluation was a couple months ago they were so proud of me. I am hearing a normal 2 year olds level. In September I started going to the Clarke School for the Hearing Impaired. My Grandmom takes me every Tuesday and Thursday. I love going with her! She sometimes surprises me with little presents. It is fun! I have 4 other kids in my classroom and two teachers. I am the only one that is potty trained in my class. When I don’t go to the Clarke School I go to Aunt Gail’s. She is who takes care of me when Mommy and Daddy are at work. I have lots of hearing friends at Aunt Gails. I taught them lots of sign language. I love going to Aunt Gails.
So, this gets you pretty current as to where I am at today. Now Mommy will be able to blog and keep you updated. She will fill in with stuff I forgot to tell you along the way. Oh yeah, I have a puppy named Toby.