I lift up my eyes to the hills- Where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip - He who watches over you will not slumber; Indeed, He who watches over Israel will neither slumber nor sleep. The LORD watches over you- The LORD is your shade at your right hand; The sun will not harm you by day, nor the moon by night. The LORD will keep you from all harm- He will watch over your life; The LORD will watch over your coming and going both now and forevermore.
Celebrating Holland- I'm Home By Cathy Anthony (my follow-up to the original \Welcome to Holland\ by Emily Perl Kingsley) I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad. I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?
Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.
I have come to love Holland and call it Home.
I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.
Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!
News will be coming. School is has been so much fun. Ms Derstine is awesome. She figured out yesterday something was wrong and by darn, last night Mommy did some trouble shooting on my implant and the processor is bad. I didn't hear what Ms Derstine said to draw and she thought that was really strange. I even cried and said I missed Mommy but she just had a gut feeling that wasn't the case. Yeah for Ms. Derstine, the teacher that is just learning about a deaf child did something phenomenal!
We had an awesome trip to Disney. Disney Guest Relations made Morgan's trip so special. We stayed at Port Orleans, Riverside. Disney arranged to have the room decorated before our arrival. It was complete with embroidered Minnie Mouse ears, Autograph book and pen and a beautiful frame with a signed picture of Mickey inside it. Morgan did Bibbidi Bobbidi Boo on Sunday and then dinner in the castle afterwards. On Monday morning Morgan was greeted before the park offically open by none other than, Mickey Mouse. Disney had another set of embroidered ears complete with princess crown and veil. It was the most precious picture, Mickey coming out of his house and Morgan running towards him! After Mickey took her around his house and Minnie's house they had another surprised planned. Morgan spent about 20 minutes with Mickey. Mickey then handed Morgan back over to the Disney people and they walked her down this long hall. At the end of the hall was Belle, Cinderella and Sleeping Beauty. The look on Morgan's face was priceless! She spent 1/2 hour with the princesses. They told stories and danced and just had a fun time playing. We had dinner Monday at Park Fare with the mean step sisters. After dinner we headed over to the Magic Kingdom for VIP seating Disney arranged for the Electric Light Parade. What a show! Even the floats bowed to Princess Morgan. We ended Monday evening with the Wishes Fireworks! This day was a dream come true for Morgan, THANK YOU MR. DISNEY WORLD! Everyday when we returned to our room the cleaning woman made sure she had a different animal made with our towels. Morgan's American Girl doll always was seated doing something different. We had more towel animals than on a cruise. Morgan's favorite ride was Kali River Rapids and right behind this ride was the Barnstormer in Toontown. Morgan was a complete angel the entire trip. We spent time swimming everyday to take a break from all the excitement. We all enjoyed this down time. Friday Disney arranged for Morgan to have special seating for Beauty and the Beast show along with the Beast giving Morgan the Red Rose.
Well today is a big day, Morgan and I are doing a taping of our campaign speech for United Way. We are both pretty nervous, and I am totally on edge. They are going to play the video at a bunch of meetings at Knoll so that all the employees get a chance to see it for the United way kick off. Wish us luck! Thank you United Way!
Dear Morgan, Someday when you look back at this blog and see what a good job your Mommy and I did trying to make sure we touched everything along your journey.
This morning you were laying on the couch when I came in for my morning visit. You were just waking up. Nothing at all seemed unusual to me. After a little while I sat down with you and you seemed sad. You never seem sad. You are a fisty little girl with lots and lots of energy and enthusiasm. As a matter of fact, last night was your first soccer practice and you just had a ball. You ran and ran! Even when your ear came off you just put it back on and kept running. We talked a little more this morning and then all of a sudden I saw you really were sad. There was a big ole tear running down your sweet cheek. I had no idea why but oh my goodness I had one on my cheek that followed right behind yours. We started talking a little more and you told me, "Mommom, I wish I was like other kids and could hear. I wish I didn't have to wear these Cochlear Implants". Well, Morgan you did break Mommom's heart this morning! But you know Morgan, You are never alone in this journey that won't be easy at times. Your family is right there with you and when you have a tear you will see we do too. And when you smile we will smile too. We are part of you Morgan!
A lot of our friends have asked how is Morgan's speech? Since cochlear implants are still a very new piece of equipment for most, it is a very good question. Most people would think she talks the same as a deaf person with a hearing aid. A hearing aid makes what a person hears just louder. A cochlear implant makes what the person hears clearer. I found a video for you to hear what Morgan sounds like. In the next month we should have her own video posted. As some of you know Morgan and Mommy are spokes persons for the United Way. We might do a power point with Morgan talking back and forth so that you can hear her also. She does sound just like these little guys in the video though.
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Armstrong, Beth, son. Patron Saint, Matthew." "Forrest, Marjorie, daughter. Patron Saint, Celia." "Rutledge, 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 knows no laughter? That would be cruel." "But does she have the patience?" asks the angel. "I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it." "I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it 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 seperate herself from the child occassionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know 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 witness to a miracle and know it. 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 the air. God smiles. "A mirror will suffice."
I think only a CI family can associate with this..... Why is it that your child's EARS birthday is more important to you than the kiddos "real" birthday?
HAPPY 3RD BIRTHDAY TO MORGAN'S 1ST MAGICAL EAR!
We are so proud of you and the hard work you have done for the past 3 years with that ear. That little ear is the most precious thing to Morgan. If she ever thinks it is lost or misplaced she totally freaks out!!!! The feeling someone would get if they lost their engagement ring or wallet or any sentimental thing they might own.
We are celebrating with a cookie dough birthday cake and some awesome presents. Morgan got a new Willie Wonka Choc Factory movie and lots of arts and crafts stuff. Aunt Cheryl came bright and early with a Tink fairy and chapstick. What an awesome day. It is a day that will always bring tears to my eyes! The first time she ever heard us tell her,,,,, " We Love You Morgie"! Ok, enough of this post, I am crying now!
Friday my first implant (that is what I call my ear) will be 3 years old. I can't wait to have birthday cake and maybe get a present. I would like a junior size football. The one that Uncle Jamie has is a little big for me. I can do a nice catch and even a spiral toss. I will show you pictures of my birthday cake after Friday. I even have a special Tshirt to show you.
I had such a nice week. I got to spend time with my Mommy's Godparents and their children at Paige and Tom's house. They were all together because a very SPECIAL man, Tommy was home to get married to his beautiful bride Janet! We don't get to see them much especially with how darn busy these magical ears of mine keep us. It has been 4 long years of lots of Dr appts and therapies and surgeries. Hopefully, since my ears are doing so well and the bilateral surgery is over I can become what some would call a "normal" kid. I had some really nice family members help my Mommy and Daddy come up with the rest of the money to buy those expensive batteries I need. THANK YOU EVERYONE! I can now hear in the bathtub and the swimming pool. Of course we are a little chicken of the pool yet. I CAN'T TELL YOU IN WORDS HOW AWESOME IT IS TO BE ABLE TO HEAR!!!! When my ears are off I am very quiet and it isn't fun. I always want my ears on. What a great week I had getting to know everyone and especially, my very own Marine, Tommy! I love you! Wait til Tommy's friends see he is going to be getting letters from another pretty girl named Morgan. They are going to be jealous!
We had our 8:00 appt at CHOP today and a 9:00 appt for speech. They were so surprised how well I was doing with my new implant. I am two months post activation. They have scored me at 6 months post activation. I have to thank all the people that are helping me with the numerous hours of therapy that I am enduring. Heather from the Montgomery County IU dept comes to my house bright and early every Thursday and Friday morning. We work from 8am to 8:45am. I still go to see Lindsay for an hour a week at Theraplay. These two girls have put so much time into my progress that I will be forever grateful. Heather from the MCIU thinks I am gifted. I think I have so many wonderful people that care about me and work so hard with me that I am not gifted but just plain old BLESSED! I am starting to not hate my new ear. I like to wear it every day but its the first one I take off at night when I get tired. I will head back again to CHOP in another month and they will be checking the electrodes in my oldest implant. If you remember they weren't working and last month Carmen checked them again and they were working. She hasn't turned them back on yet because she is still watching them.
I got my birthday pictures taken a couple weeks ago and this what Picture People did with all the pictures they took of me.
Today was the first day that my therapist from the IU was at my house. Heather was surprised that I could do all kinds of stuff with just my new ear. She thought I had both of my ears on. This is such hard work and I love my OLD ear but I am working hard with just my new ear on for a lot of time each day. Today Cochlear shipped my rechargeable batteries. I am so anxious! I will finally be able to swim and play in water and be able to hear. I don't know who is more excited about this, me or my Mommy and Mommom. They say it is such a pain to take me swimming and me not be able to hear anything they are saying. I don't know much sign language anymore so that doesn't help. And, just think about it even if I know sign language no one else really knows sign language around here so they wouldn't know what I was even trying to tell them. YEAH for rechargeable batteries! And, one more thing today, HAPPY BIRTHDAY POPPOP!
We had our 2nd annual bake sale to raise awareness for Cochlear Implants. It was such a hot hot day. Some of the people remembered us from last year and were running to get their favorite baked good. Mommy and I can bake some really yummy desserts. Some of the people in Delaware call whoppie pies, gobs. They were a big seller again. We didn't have too much left over this year. One man that owns a catering business actually would like my Mommy to bake for his events if he has them on the weekends. How exciting since this is really Mommy's dream to own her own bakery.
After the bake sale we spent time in the pool. Mommom says that swimming and deafness is the worst combination. Just think about it, I always want to go to the other end of the pool and I am much faster on the outside of the pool and I can't hear anyone tell me to not go to the deep end. So, they are trying to get my attention and it just doesn't work well at all. Especially cause they are usually in the water and have to jump out really fast to get me before I jump in at the wrong place. Soon I will get special batteries so that I can hear when I am near water. That will be such a big help for whomever is watching me. I read lips really well but I have to be close to you to do this, so again swimming and deafness are like oil and water!
My Mommy says when I have a birthday that means I have to go for a check up. I am not keen on going to any type of Dr and I am sure you all can understand where I am coming from. Mom and I went on Friday morning and we had a very nice pediatrician. I am 29 pounds and 36 1/2" tall. They said that means I am in the 9th percentile in weight and 12 percentile in height. I gained 2 lbs from last year and 2 1/2" taller. I had my eyes checked and at 4 years old you are supposed to get your hearing checked. I didn't have to do that, um wonder why? Probably because my ears are bionic and I can hear like superwoman. I got two shots and only cried a little bit cause I didn't want to scare the other babies in the Dr's office. Mommy is sooo busy baking this week and finding lots of freezers for the baked goods. We are doing the 2nd annual Morgan's Magical Ears bake sale. We send the money we make to the Cochlear Awareness Foundation. I will show you pictures after the bake sale so you can see what our stand looks like. Mommy bakes so much that I am the official egg cracker now. I don't even get any shells in the batter!
Daddy and I had a special visit this morning to Philadelphia. We had an 8:00 appt with a booth test and mapping. I tested 25 decibels in the booth and the mapping only needed to be tweaked. They were so proud of how far I have come in the past 3 weeks. I then spent an hour in speech. I surprised them also. They said that I was testing at 4 to 5 months post activation instead of a short 4 1/2 weeks. I am working very very hard though. I now don't mind as much when I have to take my old ear off to listen. Carmen at CHOP also tested the two electrodes that were no longer working and found that they are indeed working again. She didn't turn them back on just yet. they want to watch and see next time I go. Mommy takes me to Theraplay on Mondays. My therapist is working so hard in learning everything she can to make this new ear transition really fast. On Monday night they told Mommy I did so well and scored 90% accuracy in speech recognition. My special prize was not just one but THREE bottles of glittery nail polish! I am such a girlie girl.
I am finishing up my first year of mainstream preschool at Pennview. I have had such a great experience there. I had an awesome teacher that learned everything she could about a deaf child. I am the schools first CI kiddo. I also had a fantastic teacher from the IU that worked very hard making sure I wasn't missing a trick. I want to thank every person that has helped me become the outgoing girl I have become this year. I am no longer a toddler but have grown into a big girl. I am ready for summer and spending lots of time with my friends at Auntie Gails.
May 31, 2010-HAPPY BIRTHDAY MORGAN! Mommy and Daddy love you so much! Some days I can't believe you are 4 alreadys...other days it seems like you should be turning 14. I can't believe all that you have been through in your short 4 years. You have accomplised so much, and I can't begin to tell you how proud I am of you. You have faced everything head-on and have done it with such grace, and have always come out on top! You are the strongest little girl I know and I couldn't have asked for a better daughter! I hope you had a GREAT Birthday Morgie!
Well today was an important appt. We had to go see Dr Germiller to check Morgan's right ear tube that was all clogged at her visit after her surgery. We did peroxide for about a week and a half and then perscription ear drops for 5 days. We were hopeing it was all clear because it if wasn't she would have to have surgery again to replace it. Good news was that it was all clear and she is good to go for another 6 months. As much as we love Dr Germiller it will be nice not having to go back until November. Yippy!!! Morgan continues to work very hard everyday at learning to listen with her new ear. Its is very exhausting and frustrating as times for her but she is doing amazing. On Tuesday when she only had her Right(new) CI on, I called her name and she answered my by saying, "what". It was music to my ears. She was able to recognize the sound of her own name with just the new ear! What a great morning that was. Now two days later she is a pro at responding to her name with only the right CI. Keep up the good work Morgan, Mommy and Daddy are so proud of you!!!!
Well yesterday when I got home from work Morgan and my borther had a special show for me. It almost brought tears to my eyes! Morgan had me sit down on the floor so I could watch and listen. She sat on my brothers lap looking at me. Jamie would say a word and then she would repeat what he said. It was all just random words or names that he was saying! I was in shock that she was able to hear and distinguish language already. I wasn't expecting her to be able to do that for at least a month or two after activation. This morning Morgan and I were looking at a book with just pictures. The one page had a pictures of body parts (hand, foot, nose and eyes) I would say "hand" without her seeing my face and she was able to point to the correct picture!!!!! It was so exciting...I am one proud Mommy!
That was a fast week! We did end up going to the please touch museum after activation and sure enough there were 3 tickets waiting for us along with 6 tickets to ride the carousel and a parking pass. That was such a treat and we are very thankful for that kind lady we met in the store!!!! Thank you! We all had a great time! Today May 17th Daddy took Morgan for her mapping, they had an 8am appt so had to leave at 6am again to beat some of the traffic. They made good time again, but this time I had to leave Daddy in charge of fixing Morgan's hair...I can only imagine! LOL. Morgan was able to get through all 4 of her programs by Wed afternoon after just being activated Tue. She likes having two ears on but is not a big fan of only wearing her "new ear" She isn't able to hear us talking yet with that one, and can only hear muffled loud sounds. We are hoping with this new set of programs she will start to hear more things! She did a good job this weekend in NY at a parade listening to bands play with only her "new ear" She was even taking the "old one" off without me even telling her too. I was very impressed and proud of her. This week the intense therapy will begin. Carmen her audiologist says she will notice the biggest difference between her progam 3 and 4. We can't wait to see how this week goes. She doesn't go back until June 15th.
Today is the big day! I could hardly sleep last night I was so excited. Activation was at 8 am so we left the house around 6am to make sure we made it on time....You know how the traffic is on 476 and 76. Horrible all the time. We just picked Morgan out of her bed and put her in the car, so she slept till we got there and woke her up. We got there around 7:30 am. We had just enough time to wake her up and get her dressed before we went in. This was such a special day, with Morgan getting activated and both Ben and I having off at the same time. We were going to treat Morgan to a day at the Please Touch Museum after she was "turned on". Once in the hospital we stopped in the tiny convenient store to grab a little something to eat and drink. Morgan was telling the cashier that she was going to hear for the very first time today out of her New Ear, and that Mommy and Daddy were taking to the Please Touch afterwards. It was so cute listening to her tell the lady all about getting to hear for the first time! The lady asked what our names were and told us to just go to the front desk when we got to the museum and there would be tickets waiting for us. Ben and I looked at each other and were thinking could this be real? Well have to wait and see. Activation went fantastic....Morgan did a great job, but we were a little out of practice at our condition response listening game. We need to work on that. She was acting like this was no big deal and Heather her TOD(teacher of the Deaf) and I were about in tear when she said "I HEAR IT"! Morgan has 4 programs to go through until she goes back on Monday the 17th. These 4 programs are very basic just to get used to everything, so hopefully after next Monday we will be able to really start some intense therapy. I will post videos.
Today is an exciting day....we are going to CHOP to pick up Morgan's new N5!!!!! She is getting her left ear mapping all set up to wear the N5 and she will also get to wear just the processor on her Right side without it turned on so she can get used to wearing something on that ear. I was glad to be able to have a week to play with the new remote before we got the new one activated. We also got to see how good of a job Dr. Germiller did at making the two even. That is one of the hardest things for a dr to do when going bilateral. We also had appt today to see Dr Germiller so that he could look at her incision and clean out any leftover junk in Morgan's ear. She absolutly hates when he puts that "stick" in her ear. Of course the tube in the right ear was still somewhat blocked so he had us put peroxide drops in her ear until it "hurt". I was like oh great...does he not know this drama girl. She doesn't like drops in her ears so they always hurt. Well she actually did a great job with them and didn't complain of them hurting. We did the peroxide drops 2-3 times a day for about a week to a week and a half and then she started saying they hurt...It was actually exciting. So then we switched over to her floxin drops for 5 days. We go back to have that tube checked again on May 27th! Please pray that is all open and good so Morgan does not need to get another surgery to replace that tube. Thats the last thing we want right now....
Well on Tue April 27th Morgan was going back to school for just the morning, so we can get back into our routine. Well that didn't end up happening that Morning. On the way to school Morgan and I got in a bad car accident. We were coming up a hill to a stop sign when a car coming down the hill started to lose control and was all over the road heading right for us. There was a big field on our right hand side so I pulled off the side of the road right nead a telephone pole. I turned around to talk to Morgan and just as I turned my head back to look out the front window the out of control car t-boned the telephone pole so hard it wrapped around it and totally took out the whole front end of my Jeep Liberty. Morgan and I walked away with minor bumps and bruises but they young man who hit us was it bad shape. My Dad did take us to the hospital so we could get checked out and have some x-rays done. We were released shortly after. We just keep praying that he will make a full recovery and we hope that we will be able to meet him sometime! We feel a special bond with him! So much for having a low key two weeks after surgery for Morgan. We are very blessed and thankful!
Its has been a whirl wind of a couple weeks....so so so many things have gone on. Well Morgan had her 2nd cochlear implant surgery on April 21st. Here Pop Pop came along to keep me company in the waiting room. My dad and I were together the day they told us Morgan was deaf and we were together the day they came out and told us all the electrodes were firing, and she would soon be hearing with 2 ears! I am so lucky that I will always have that special bond with my Dad! I don't know what I would do without my Mom and Dad, they are definitly parents that would do anything for their children and grandchildren. They are the two most unselfish people I know. They are always going out of their way to make it easier or to help their family out any way they can. We are very blessed! Well we left for the hospital about 5:30 am and got there just before 7 am. We checked in and they took us back to a room almost right away. They did all the vitals etc and then we just had to wait for Dr Germiller to come in and do the measuring so he could try his best to make them even. We waited for a long time. They finally took her away from me around 10:30 am and started surgery around 10:50 am. The nurses were great and came out ever hour to give and update. My dad and I passed the time with a subway hoagie and kept busy searching on the internet. We were anticipating Michael(the audiologist) to come out, he is the one that was testing all the electrodes to make sure they were all working properly. There is always a chance that it might not work. We were lucky and everything was great. I broke down in happy tears! Shortly after Dr. Germiller came out and told us that everything went great and we would soon be allowed back to see her. I could hardly wait to see my baby. Its the worst feeling as they take your baby out of your arms into surgery! I knew it was the best thing for her though. She was still asleep when we went back and she slept for a little while. The nurse said that was great that she was sleeping like that. It would help her wake up better. After she woke up we got her dressed and headed down to get xrays, to make sure everything was in the right place. She was still really groggy, and slept the almost the whole way home until we stopped to she Melissa. She wanted so bad to stop at the hair cut place to see her. I have a picture of Morgan actually smiling with Melis and it took all Morgan had to get that smile out! It brought tears to my eyes. Around 8:30 pm that night you could tell the anestesia was wearing off and she was feeling pretty good. She was no stop talking from that point on. We thought we would be awake alot of the night but she basically slept right through the night. She is a trooper!!!! The next morning we were allowed to take the bandage off her head and boy it was a sight to see. As soon as we took it off the blood started coming out of her ear and for a couple days after. It was the worst that Friday night after we got down to the shore for what we thought would be a nice relaxing weekend. I was a nervous wreck. I called the ENT on call and he had no clue about implants and was having me go to the ER. The bleeding did stop and wasn't to bad the rest of the weekend. I did have Dr Germillers cell number so I gave him a call just to make sure everything was good so I didn't have to worry any more! He calmed me down and we had a great rest of the weekend! Melissa was coming Monday to spend the day with Morgan so she had another day of rest before we went back to school on Tue Morning. Pictures to come!
I can hardly believe that Morgan's new ear is right around the corner. It's only 14 days away! So scary yet so excited. Morgan isn't as thrilled with getting a new ear anymore since she has an idea of what surgery is from getting her tubes done in Feb. It depends on the day if she wants a new one or not. She was very excited to be able to pick out the cool covers for her new N5 that she will be getting. She picked a pretty light purple one with white flowers on it. Grandmom Frank would have definitly loved that one...Morgan and Grandmom F. share the favorite color purple.
Insurance on the other hand is so confusing, it drives me nuts sometimes. They tell me the surgery needs to be pre approved, and then I call today to check that it was approved and they tell me that it doesn't require pre authorization. They insurance will decide at the time of billing if they are going to pay or not pay for the surgery. CHOP said there is no guarantee that an insurance company will pay for any surgery. So I am like great, I could end up with on very very very large bill after this is all done, and I will have no clue. As if having to put your child through surgery isn't stressfull enough.
Keep us in your prays for a safe surgry and a quick painless recovery!
Monday March 22nd Morgan had her Cardiologist appt to follow up with a very very tiny hole in her heart that causes a very very small heart murmmer. You can only hear the murmmer if you are listening really really really close said the Dr. and if you know what you are listening for. Nothing needs to be done about it, a surgan wouldn't even be able to find it to surgical close it. It may still close all the way on its on or it may just be something she will always have. Either way no biggy. She doesn't have to go back for 5 yrs. I must say it was the fastest CHOP visit ever. Melissa was so great and came along with us and she must me our good luck charm. We were in and out in 30 mins. So Awesome.
Thursday March 25th Morgan had her follow up urology appt. She had her ultrasound done first and then she saw Dr. Carr. This appt also went very well. She stiill has the kidney stone, but is remains in the same place and the same size which is good. Her kindeys are growing nice and healthy! We don't have to see the urologist again for 2 years. Its always nice when they increase the amt of time between visits.
Yippy it was a good week of good news Dr. appt! Great job Morgan!
You know your child has a cochlear implant when... (Thank you Jenn for starting this)
...her hearing aids made better chew toys than amplification devices.
...you're on a first name basis with the employee at Sally Beauty Supply, because you buy so much wig tape.
...you momentarily wonder why anyone would try to teach the alphabet in the bathtub when your child can't hear in the bathtub, and then you remember...
...you worry about rough play, tumbles, jumping, etc. because her coil might fall off.
...you have a fear of plastic slides
....you carry along static guard and dryer sheets when you go to the park.
...you find yourself pointing out every sound that you hear (while pointing to your ear), even all those lovely potty sounds.
...you pop her coil off once and a while and yell really loudly, to make sure that she really can't hear without it.
...you've ever gotten strange looks or questions while in public.
...you know what "ear gear" and "critter clips" are.
...you never leave home without extra batteries, a back-up processor, a remote control, or extra wig tape.
...you've discovered a contraption, like an aloksak or food saver bag, to allow your child to hear while swimming.
...children without cochlear implants start to look stranger than those with cochlear implants.
...you decorate your child's CI to make it look "cool".
...you've ever been driving and gotten hit in the back of the head with a flying processor.
...you've had to search high and low for a processor that your child has mysteriously hidden somewhere, maybe even having disassembled first.
...you know few, if any, other kids (or even adults) with cochlear implants. You've made most of your connections through the blogging world, or on facebook.
...you've traveled far and wide to meet up with other families of children with cochlear implants....you've taken the John Tracy Clinic correspondence course.
...you are a member of the Alexander Graham Bell Association for the Deaf and Hard of Hearing, Hand and Voices, or the American Society for Deaf Children.
...you've ever received or know of others who have received hateful comments from a member of the Deaf community
....you check the Ling sounds every day, and get worried if your child doesn't respond.
...you refer to her processor as her "ear".
...your child takes off her "ear" because she's mad, frustrated, or doesn't want to hear you anymore.
...you spend at least 2 hours a week in formal therapy, but all playtime is unofficial therapy time, and you're always looking for a teachable moment.
...you narrate everything that you do, and even elicit strange looks at the grocery store from your repetitive comments like "up, up, up you go", "do you want a piece of cheese? hmmmm, cheese? I like cheese. Do you like cheese?"
...you marvel every day at how the simple act of attaching the magnet allows your child to go from 0 to 95 in an instant.
...you've adopted the "I love you" sign as your family symbol, even if you don't use sign language with your child.
...you can't imagine life for your child without it.
...you are able to vacuum, hang pictures, and told as loud as you want while your child is napping.
...you have to pack batteries for a sleep over.
...you get a call from school/babysitter not because the child is sick but because the light is flashing red, or her ear isn't working right.
...we got to the craft store for ear decorations.
...people appologize to you when they find out your child is deaf
...people think the flashing red like is a cool new earring
...when people actually think I would let my toddler wear a blue tooth
...when you can pretend the blinking red light is a "kid finder" just to see that persons reaction..LOL
Well Morgan is doing well after her surgery on Friday afternoon. Boy what a day. My Mom came with me this time and it was her first and last. Its so hard to see the stuff these little kids have to go through. We arrived at 12:30 pm and they checked us in and took us into a room pretty fast which was nice. There they gave Morgan a gown and a pair of pants to wear, and a pair of socks. She looked like a yellow duck. They took all her stats like her blood pressure, oxygen, weight (27 lbs), height, temperature etc. Then she had some downtime until it was time for the giggle juice. The Dr came in and asked if we had any questions, and the anesthesiologist came in and gave us a run down as well. He said since its such a short surgery there was no need for an IV "unless" certain things happened. He listed a couple things but said don't worry it only happens like 2 times out of a 100 or its only a 5% chance. I looked at my Mom and said he doesn't know Morgan very well. She is always in the small percentage. She didn't want to take the giggle juice so we had to make her take it. Not fun. When that started to kick in she got more limp and heavy. Kinda like a baby. She wasn't able to walk on her own so she had to stay in my arms the whole time. She kept pulling up her gown and showing her belly to us and the nurses and giggling. She thought that was pretty funny. I guess thats why they call it giggle juice. We gave her hugs and kisses and watched the nurse pick her off my lap and walk away with her. Its the worst feeling in the entire world. I really hope she never remembers it. Off to the waiting room we went. We got to talk with another nice family that was also waiting for their little girl to get out of surgery. Dr Germiller then came out after about 15-20 min and said everything went great. If she didn't get those tubes in today he said, she would have been at the dr that night or the next morning with an ear infection. He drained alot of yucky cloudy fluid of of her right ear. Then the anesthesiologist came out and we asked "how did everything go?". He said "ok Now". My Mom and I were like what do you mean Now? Well believe it or not Morgan was one of the few that had a small issue with the anesthesia, I can't remember what he called it but what happened was her vocal cords closed up, its the brains way of protecting the lungs from getting any fluid in them. So they needed to put in an emergency IV so they could give her a muscle relaxer to release the vocal cord muscles. Thank goodness though before they put anything in the IV her vocal cords released on their own. She was all out of sorts when she first started to wake up. She fell back asleep for a little while and then woke up a little better the second time once she realized it was me holding her and it was all over. She then freaked out when the nurse tried to put a band aid on her IV when she took it out. Morgan is the only kid I know that HATES band aids. I can only imagine how she is going to be with a big bandage wrapped around her head in April. Then we got all dressed to go home and Morgan gets sick all over both of us. Didn't think to bring extra clothing. We left shortly after. All her color came back after that. As soon as we got in the car she was asleep for the rest of the ride home and afternoon. She had a lazy night of lying around until Aunt Marcie, Kacie, and Megan came over to give her an art set for being such a brave girl. She was then up and running around and giving them a fashion show with her new bathing suit and summer dresses she got the other week. She needs drops in her ears for the next week and boy I can't wait until that is over. She hates them and it takes both Ben and I to hold her down and get them in her ears. She always says they hurt but I don't know of anyone who really likes cold liquid being in their ears. That part will soon be over! Another milestone accomplished for Morgan! Morgan you are such a Trooper and I am so pround to be your Mommy! I love you!
Well Feb 19th is approching very fast, it will be the end of the week before we know it. I think its finally starting to set in that Morgan is going to actually have to go through with getting the new tubes put in before the implant surgery in April. I just had to have to see her put under twice so close together. It breaks my heart. And even though I know its only a small procedure, and it will be for the better my fear and anxiety is on the rise. I just keep praying for a quick, successful, painless surgery. I know I will start crying the min they take her out of my arms into the O.R. room. Its a scary moment for a Mommy, and it doesn't matter how many times you have gone through it in the past or how fast or long the procedure. It really sucks to have to watch your baby go through this. I got the call yesterday that we should arrive at CHOP in Chalfont at 12:30 pm. I couldn't believe it. I have to tell this poor child she isn't allowed anything to eat or drink(besides clears) from 11pm Thur night (which for her is like 8pm bedtime) until after the surgery. Thank goodness she is allow popsicles without any pulp in them. We are trying to make it into a fun things, telling her she is allow popsicles all day and she can even have one for breakfast. We will be going to the store Thur night to get a variety of popsicles. I am going to have to tape the pantry and refrigerator shut so she doesn't go helpping herself. Well wish us luck on Friday! I will post after we get home! Morgan Mommy knows you will do great and you are a brave little girl! You amaze me everyday! I love you as big as the sky!
It was an exciting morning....Morgan got picked to be on NBC 10 news this morning as part of the "Me and My Wheels" segment during the 5:15 am and 6:15am traffic report. It was such a coincidence that at the 5:15 am one they were talking about cochlear implants...how weird is that. She wasn't part of that though. They said, "This is Morgan Keely of East Greenville Pa. She loves riding her John Deere Tractor with her Pop Pop and her dog Spencer. Here is the picture they used.
Well this month has been very crazy! Morgan started going to school for the full day now instead of 1/2 day. She goes to Mrs. Mcamy in the afternoon for more fun and education...she is one smart cookie! She loves going and asks to go everyday! We found out that we are officially schedule for a 2nd "ear" on April 21st. I am so excited yet so nervous. I over analyze everything so I am starting to wonder if we are doing the right things. Thanks to my friends on CI Circle I feel much better about it.
January 13th-was a crazy horrible night. Morgan woke up with vertigo. She was so dizzy she couldn't walk, and she kept bobbing her head to the right side. I was so scared. Even though she had a dizzy spell over a year ago it was still really scary. She threw up a few times and then finally fell asleep for the rest of the night. Which wasn't very long since we didn't fall asleep until about 3 am. She wasn't dizzy anymore when she woke up, but was still a little unsteady walking. We went to the pediatrician right away at 9 am to have them check her over and make sure her ears were not infected. Everything checked out good. Also was in contact with Dr. Germiller and his nurses. There weren't to concerned about anything and had us watch to make sure she didn't get really high fever in case of meningitis and that if she showed signs of ear infection to take her to her dr. Well she ended up getting an ear infection that Saturday night into Sunday(Jan 17th) The Dr said there was lots of cloudy, mucky fluid in her ear and it didn't look nice. He told Morgan he was looking for potatoes in her ears, and then when he saw that he told her she had rotten potatoes in that ear. She really enjoyed his humor.
January 28-we have an appt to see Dr Germiller for a checkup and to see if we need tubes put in before the implant surgery, since we had another ear infection. During the check up they asked a bunch of questions for the anesthesia part of her surgery to get that out of the way and Dr. Germiller also still found some fluid in Morgan's right ear. It wasn't infected but it just wasn't draining all the way. He had them to a tympanagram to see if her ear drum was moving, and the results were just what he had suspected. Not moving very well from the fluid. He also had them take an xray of her neck and head to look at her adenoids, to see if he needed to remove them. Luckily they are normal and can stay put. He will need to put new tubes in on Feb 19th though. So we can get rid of the fluid and have time to recover before the big surgery.
Here is a copy of the x ray that they took, you can see the implant that is inside of Morgan's head... I thought it was awesome.
This first one is from the day she had surgery on 7/13/07 and the second one is from her dr appt 1/28/10.
Well I have made a promise to myself and Morgan that my New Years Resolution is going to be to keep her blog updated on a regular basis from now on. I just let life get in the way of sitting down and writing and sharing some of the events that have been going on. So in this post I will fill you in on the end of 2009 and the beginning of the New Year 2010.
Oct 20th, 2009
Morgan had an audiologist and speech therapy appt at CHOP. She was first tested in the booth and did very well, heard things that I myself couldn't hear. They didn't really change to much on her mapping except that the little light that would always blink red is now reprogrammed to only flash red when there is a problem, such as the magnet falls off her head or something is wrong with the coil, processor, or microphone. So far that has been going very well. Her teachers seem to like that much better! They have less to watch for and they know for sure is something isn't right. I have so videos of Morgan in the booth being tested and what she has to do in the booth. She also had her speech therapy appt, they said you could line up a bunch of "normal" hear kids and you would never be able to tell that Morgan wasn't one of them. She fits right it. What more could a Mother ask for. She was testing at a 4 year old level in some things and then age appropriate in others.
Dec 1, 2009----Morgan is going to be getting a second implant in 2010, so one of the tests that Dr. Germiller wants Morgan to have is a Vestibular or Balance test. This has to be done at University of Penn because CHOP doesn't do it. Its a test that is usually done on older people. They just keep telling me that it will be really dark and they will spin her and that she will have to wear a type of goggle over her eyes to measure the movement, that will be able to tell them in there is any inner ear damage. I was very nervous for this testing as it doesn't sound like it will be very fun. I asked around to see if anyone else had this done and not many other did, and the ones that did have this testing done didn't have it done the same way they are explaining it to me. So to me the unexpected is a little scary when your getting it done to your 3 yr old. Well we get to the hospital and it started off bad from the time we walked in the hospital. Due to the Swine Flu going around they made all the children wear masks....Morgan did not like this especially because we didn't have to wear one. She just didn't understand as well as me. I could have gotten the germs and gave them to her as soon as we got in the room and took her mask off...yeah well what are you going to do, we need to follow the rules. Next they looked in Morgan's ears and low and behold she had a bunch of wax in her ears. Nothing new, she must have the waxiest ears ever. I think she gets that from her Pop Pop! So the Dr had to find and ENT to come in and remove the wax. She came back and said it was going to take a little longer because none of the ENT's at the Univ of Penn wanted to do it...since when won't they work on a child? So they paged Dr Germiller at CHOP in hopes that he was in that day. It was our lucky day, he was in and he said instead of us walking over there, that he would come to us. I love that Man! In the mean time we did a test that didn't matter if there was wax or not. Morgan needed to sit on either my lap or my husbands, and well lucky me Morgan wanted me, and I so didn't want to do this(hence why I made Ben come with) Well they sit me on a chair that looked like a chair from the eye dr's in a little tiny circular box. They put this huge crazy headband looking thing that had a turn dial thing in the back to loosen and tighten the goggles. They were just clear lenses that hung infront of Morgan's face. I had to hold her head from moving as well as hold the headband/hat thing on so it didn't move as well. You can only imagine my face at this point and then they tell us they are going to close the door and it will be completely dark. Then a little red laser dot came up on the wall and Morgan had to follow it with her eyes. They should have tested me to cause my eye kept following that stupid thing too. Then the chair starts spinning pretty fast I must add, she could not have sat in it herself and stayed put. Then the walls turned to thick black and white stripes as they continue to spin us the whole time. Then it just went pitch black again. I was asking how much longer, and Morgan just thought of it as a ride at Disney World. The spun us from anywhere between 5-10 min. My stomach was sick:( Good for Morgan Yucky for me. Then we went into a different room, and as we were sitting in there Dr Germiller found us and cleaned out Morgan's ears. Not her favorite thing, she throws a fit every time and it getting harder to hold her down. Now with all the wax out we are good to go for the next test. She had to wear goggles again but this time they were directly on her face, and she had to look through them at a projection screen and follow I believe it was a smiley face and then a green dot. Then then blacked out the lenses and she was seeing something in them but I don't know what. The last part of the test was they had to blow air into her implanted ear for 1 min straight. Of course right after it gets cleaned out and she freaks out again about have something in her ear. It took three of us to hold her down and the tech to be blowing the air in. Then her implant was falling off and we couldn't find it because it was in the crack of the chair and we needed her to open her eyes once we got the goggles positioned again and she couldn't hear us telling her to open her eyes and this was all time critical. Finally she opened her eyes in enough time to get a reading. We got the results before we left that she was approved to get her second implant. This test was to see if there was any inner ear damage done during her first surgery. If there was damage in her left and then got her 2nd implant and there was also damage done on that ear it could throw off her balance for the rest of her life. Yippy we are good to go. Now we just need to fill out the intake paperwork and get insurance to approve us. Oh and we have to go have a sticking hearing aid check to make sure yet again that it doesn't work.
Dec 18th, 2009--Morgan had her first dose of the swine flu mist vacine. Nothing to eventful with that thank goodness.
Dec 24,2009--Morgan started her Christmas Eve with a hearing test with her hearing aid on her right ear. She just didn't undstand why she couldn't have her implant on. She kept saying I can't hear its not working. If that isn't enough proof that she can't hear with the help of a hearing aid then I don't know what is. Needless to say she is approved from the audiologist stand point.
We had a GREAT Christmas, and I think santa was very good to everyone. Morgan was as the perfect age for everything this year and she really understood santa this year, and loved sitting on his lap.
She has been still going to Theraplay once a week and doing great there. Her two favorite therapist are Lindsay and Emily. She basically won't give the other poor girls the time of day if she has them. But is a little chater box for the other two.
Penn View continues to do a fantastic job with Morgan. On the 29th of Dec we all got to go watch her in her first play. She was the cutest little lamb, and she sang her little heart out to Away in a Manger and Jingle Bells. It brought tears to all of our faces hearing a deaf child sing so beautiful!
I promise to do a better job at updating this. It makes it hard when I can't sign in on my own computer at home for some reason...I need to get that checked out.