Wednesday, October 22, 2008

Introduction of Morgan

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.


Unknown said...

Morgan is certainly a very special girl, and a lucky one too. But her family needs to know how special they are too, doing so much to help their little angel.
Love, Aunt Karen

Kauffman family said...

WOW, Julie and Ben- What a blessing Miss Morgan has been to you and what a journey you all have been on. How lucky you all are to have such love, support and care for eachother - for Morgan and from her grandparents. Parenting is a life-long journey full of ups an downs. How fortunate you are to have such love and support between you all.
Thanks for sharing-
xo Aunt Linda and all

aunt gail said...

Morgie is one special little girl, and she has an awesome mommy and daddy, and pretty set of terrfic grandparents! With out the support and love for each other, Morgie has a wonderful future ahead of her !! The first day I met Morgie, she had my heart, right there and then, and will have it forever! I'm so blessed to able to be have her stay with me,while Julie and Ben and Mom-Mom and Pop-Pop are at work! Julie and Ben, you are wonderful parents! You've done a great job, and no doubt about the future! My prayers and thoughts will always be Morgie and Julie and Ben, and Mom-Mom and Pop-Pop! Morgie will always be Pop-Pop's like monkey !! Love you Morgie! Aunt Gail

Mommom said...

God Chooses Mom for Disabled Child

Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments forpropagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity. "

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles. "A mirror will suffice."d

Aunt Cheryl said...

I am so blessed to be Morgan's Godmother. God sure knew what he was doing putting Morgan in my family.

Love, Aunt Cheryl