We took Morgan to see the 100th Anniversay Disney on Ice show this past week, I didn't tell her until that morning because she would have been asking everyday when we were going. She was so excited and she didn't have to wait long to actually go then. Her babysitter said she talked about it all day!!! So at 4:30 pm we left and were on our way for a 7 pm show, we thought we would grab some dinner when we got there or close. Well that didn't happen the traffic was so bad that we almost thought about just turning around and not going. We just barely made it. We got there at 6:50ish. Well the stress of the drives was totally worth it to see this little girls eyes just light up as Micky and Minnie and all the princesses came out on the ice! To see her little head bobbing to the music and her arms going was just priceless. It brought tears to my eyes just know she was able to hear and enjoy this because of Gods great technology! We are very blessed. It was so cute when Belle and the Beast came out as she yelled over the music to her Pop Pop "Don't be scared Pop Pop he turns into a Prince, its ok" What a beautiful sentence! Thank you Mom and Dad for coming along and being such an inspirational part of Morgan's Life.
Morgan went to her friend Zoe's 3rd Birthday party this past Sunday in DE. It was so much fun. Morgan had such a good time seeing all her friends from Clarke. There was four of them there from her class. It was Morgan, Zoe, Abby, and Kwan, they were missing Gilberto. I am so glad we made the drive becuase it was worth it to see them talking to one another, you could tell they missed each other. Here is some pictures and a video.
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!
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 PopIS 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.
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!
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.
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.
I can't believe my baby is going to be 3 or May 31st. How the time flies by. Since we will be at the shore for her birthday we had a little party with Morgan's Grandmom, Grandpop and all her Aunts and Uncles. We had pizza, presents and a Cinderella cake. She had such a great time, and loves the new big girl bike that Grandmom and Grandpop got her. We will have a little something on her real birthday as well, and then she gets to take another Cinderella cake to school on Tue. HAPPY BIRTHDAY MORGAN!
Well here I go again, it felt so good being able to make a donation to the Cochlear Implant Awareness Foundation that I am going to keep up the fundraising so we can continue to donate to this awesome cause. I reserved a table at a craft show in Delaware where my family has a beach house. I love to bake so I decided to do a bake sale. I have been up late at night and up early in the morning to make sure we had enough to sell at the sale. I also had the help of some friends and family to donate some baked goods. Everything looks so yummy its going to be hard for me not to eat it. Wish us luck on our 2nd Morgan's Magical Ears fundraiser.
Well our IEP day was May 20th. We started off the day with a trip to see Carmen at CHOP to be mapped. Nothing changed with that because Morgan is hearing all the high and low tones beautifully. She was hearing things that I couldn't hear( sad for me). And the appt after us never showed up so Carmen as able to give Morgan a hearing test in her right ear and programed her hearing aid. She is getting something from it which I really didn't think she was going to. Its not much but I might help with localization for her. She was able to respond when she heard something in that ear. I was very impressed. She was such a good girl and we were there for almost 3 hours. After we left there we went and took Morgan for her favorite chicken from Chik-fil-A for lunch before we went to the IEP. Since we were going from one appointment to the next we had to take Morgan with us to the IEP. WOW was she a good girl, I could not have asked for her to behave any better. She was a very good listener! The IEP last about 2-2 1/2 hrs and went very fast actually. The goals that were set for Morgan were very good and I think very attainable given that we put the effort into help her...I am now a 24 hr hearing support teacher as well as her Mommy or at least it feels like it. I am learning just as much as she is. I learn something new everyday and I have her to thank for it! With the idea of Morgan going to a mainstream preschool next year 2 days a week for about 4 hrs each day I knew I needed to have a support teacher with her each day so that they could make sure she was keeping up with her "typical" peers. Due to her scoring so well on all the test, and measuring as age appropriate they were not so willing to give me what I thought would be best for her. So after alot of discussion about the reasons why I wanted a hearing support teacher with her both days, they agreed to review the topic again. I took all the papers home to read more carefully. With the exception of the support teacher everything else looked pretty good. I was pretty pleased. Also on the way to our CHOP appointment we got a very nice phone call my in-laws. As you all know Morgan is attending Clarke right now and we were not able to send her there next year due to the fact that I had no way of getting her there 5 days a week from 9am-1:30pm, I was just thankful enough that my wonderful Mother in Law takes Morgan on Tue and Thurs this year. Well they told us they just love Clarke so much and have seen how Morgan has really made some astonishing progress that they will make sure she gets there next year. I was so shocked and thrilled I didn't know what to think. This was going to change everything that I had planned for her IEP that day. I decided to go into it with the intention of going to a mainstream preschool and see what happens. Now I am in the process of really deciding where Morgan will be going next year. Most likely it will be back to our Clarke family!!!!!!!!
We have our dreadedIEP tomorrow. I am really not looking forward to it. We have been faced with some really hard decisions with school for next year and trying to do what is best for Morgan. We really would like her to continue at Clarke as that is the best place for her to be but the county will not fund that program and we have no way to get her to school that is about and hour away everyday. If I could only get some transportation, all my worries would go away. They county wants her to attend their program they have for children with hearing disabilities. Although it was a nice school it would not be a good fit for Morgan. They have all the children from 3-5 years all in one class participating in the same activities. The individual speech therapy is given right in the same class that everyone else is playing in, so that is a little distracting and they may not get individual therapy it may be with another classmate. Although we would have that constant monitoring of her progress we still didn't think that was the best place for Morgan. We have decided to send her to a Private Christian school closer to home. Our family at Clarke has yet again gone above and beyond for us. Two of her teachers went and toured her new school Pennview to help give us ideas as to what we would need for Morgan to succeed in this school. They did not have to do that and they they did...they are the BEST and I will miss them very much. Wish me lots of luck for tomorrow! I am already stressing out just thinking about it.
Well things seem to be going very well with the new therapy...Morgan really likes going, and as soon as the therapist come out to greet us she is already saying " Bye Mommy" "see ya later". She if very comfortable with them. I went and sat in on the session for a little while today so that I could learn some things to help her move along at home. She is working on the He, She pronouns right now and syllables. She has already mastered the "ing" action words in less than two sessions. Way to go Morgan! They even made a little game for us to take home with the He, and She. They are already doing more than they have to. Morgan was able to master a two syllable word followed by a one syllable word very easily (ex: Muddy Boots). They moved her on to three syllable words then like Domino, Banana, Tomato, etc. They showed us how to use sing/song to help her make sure she got the three syllables in their. Or how to tap it out with/for her. It has really been working and Morgan thinks is fun. They aren't working to much on making sure all the pronunciation is correct right now as much as making sure she got the 3 syllables. Very pleased with the progress so far, and they are actually working on the same stuff she is doing in school which is another plus.
Well last night session went Great...It didn't even phase Morgan when we left the room...they had her so into what they were going to be doing she didn't even care. I would periodically listen at the door to make sure she was ok and all I hear was her talking up a storm and laughing...it was so wonderful to hear that. They did her therapy with a big bin of noodles which she absolutely loved with farm animals, working on 2 step directions to get into the swing of things. Then they played a fishing game and on all the fish were pictures of action "ing" words like "brushing, eating, drinking, climbing, etc" She got about 80% correct on her own, and would repeat nicely whatever she didn't get that the therapist would tell her. Then they also worked on cards with words and pictures just working on getting every part of the word in without leaving off the end or beginning. Morgan also got about 80% correct on her own. Miss Lindsey was very impress with her. Morgan is just always amazing me with all the stuff she knows and can do. She did such a great job she got to go for and ice cream treat!
Well we officially start our lessons at Playtherapy tonight...Morgan's first two appointments were just basically introduction info and some expressive and receptive testing. They are suggesting us to start out by coming 2 times a week. She doesn't really need alot of speech therapy but with her turning 3 at the end of this month and losing her hearing support teacher we didn't want her to not be getting any extra therapy after school. She scored 102 and 103 on the expressive/receptive test that they did, and the range for normal speech is from 95-115, so she falls right in the middle. We were very pleased with that and how much progress we know she has made over the past year. We are so proud of her! They are going to work on her "ing" action words and also she leaves the middle or end of a word out sometimes, so they are going to work on that. We are going to be mainstreaming Morgan in a private Christian school in Sept. so we just want to make sure she is kept up to par with her peers. We know she can do it, and we will be there to help her ever step of the way. Wish Morgan luck tonight and I will let you all know how it goes, so far I really love this place they are so loving and seem to be willing to do whatever it takes to help the children!
The whole gang that was along for the 1st Morgan's Magical Ears Trip
It was a long fun day
It was beautiful outside!
Are we all ready?
Here are a few pictures from the 1st Morgan's Magical Ears Casino Trip, it was a great day and I hope to do more in the future. It was a great success and we were able to donate a good amount of Money not only for Morgan but also to the Cochlear Implant Awareness foundation. http://www.ciafonline.org/index.html Thank you to all that help, I couldn't have done it with out you!
Well the day is almost here for our 1st Morgan's Magical Ears Casino Bus Trip...I am getting so excited...We are supposed to have great weather to be going to the beach on Sunday. We are so very lucky to have had so many people and business donate prized to be raffled off on our bus ride. We are really looking forward to meeting everyone that is coming along, we are going to have a great time. Morgan is going to be staying home with Mom Mom, and will see us off and she will be waiting with open arms when we return. She will be there to hand out little sign language I Love You hand choc lollipops and Jars of Kelchners Cocktail Sauce with special labels made just for this trip. Can't wait to post how everything went and pictures as well.
I am organizing a casino bus trip for Morgan and the Cochlear Implant Awareness foundation. We are going to the Tropicana in Atlantic City for the day. It should be a fun filled trip with alot of memories! Let me know if anyone is interested!
The medicne didn't clear up the ear infection and we were back at the Dr. Monday night. It was indeed still infected so she is now taking a stronger antibiotic. She also has such a bad ulcer on her little lip...it looks so painful. The Dr. said that is part of a virus that is going around and it would heal on its own. It seems to be getting a little better everyday but it still seems very sore. Morgan obviously hasn't been eating to much due to the lip and ear infection. Poor baby! The medicine they put her on taste so terrible, its a fight to get her to take it so I will be very glad when the 10 days are up. Here is to a seedy recovery and getting are happy girl back!
Here is a few picture from our last snow storm that we had and it ended up getting so nice that we could go outside and build a snowman. Enjoy!
On Wed night Morgan woke up telling me her ear hurt...I was thinking oh no here we go again. Well she woke up Thur morning and was acting totally fine. She told me it was all better. I sent her off to school and in the mean time I made and appt at the dr's for that afternoon...I just had a gut feeling. She came home from school and she still was acting fine. However every once in awhile she would just say ouch...my ear. So I knew it was still bothering her. We had an appt at 2:45. When I pulled into the Dr office..she started saying no mommy, no dr. I felt so bad. Then we the dr came into the room she put her hands over her ears and was saying no, all done, all better. She ended up doing great, and with an ear infection in her right ear. I was not surprised at all. Got our prescription and off we went.
Last Thursday when I took Morgan's Implant out(she wears a mold in her ear to keep the implant from falling off) I noticed what looked like a little bit of dry blood draining from her ear. That ear which is the left one is the ear that still has a tube in it. I called the resident ent on call that night to see if there was anything I should do. She just told me to put a couple drops of the floxin drops in her ear and I would get a call in the morning. Friday morning I get a call from one of the ENT nurses, she says it sounds like her tube might have come out and its just irritated from that. She calls in a prescription for more floxin drops which she needs 5 drops twice a day and also an antibiotic to take just in case it was drainage from and ear infection. I wasn't to thrilled with having to put her on medicine if I didn't need to. I asked the nurse to have Dr. Germiller call me since they couldn't see Morgan that day. Dr. Germiller did call back..her is the greatest! He said it could be the tube coming out or a granuloma which is a ball-like collection of immune cells trying to destoy a foreign substance . Dr. Germiller wasn't seeing patients on Tue but he said that he would fit Morgan in since we were going to be in the area. Morgan had school at Clarke that morning and then we were off to CHOP in the city. Morgan made little I Love You sign language choc lollipops for Dr Germiller to take home to his kids, and also we took him homemade sticky buns. She was excited to see him until she realized that he was going to be looking in her ear. He used a vacuum to suck all the junk out of her ear, which seemed like it took forever because it took me to hold the top part of her down against my chest and my Mom had to hold her legs down, and the Dr. was holding her head as much as he could. Boy is she strong, my arms hurt after that. It didn't hurt her but just being held down made her mad, she was fighting us so bad. Finally after all the sucking and having to replace the instrument he was using, because it got clogged he pulled out a granuloma from her ear. It was alittle bigger than a pin head. We were all done. Now she is on strong ear drops for 10 days. She was so exhausted from fighting us she was starting to fall asleep in my arms. Poor baby! She just kept saying "all done Mommy, all done" and she kept saying "car Mommy" I felt so bad. We go back in March for a recheck.
This was Morgan's third Christmas, and by far the best one, even thought we got another ear infection. Morgan went to the Dr's on Dec 23 and had another ear infection in her right ear...yuck. She got on some antibiotics and was feeling better for Christmas. She got so much stuff I don't know where to put it all. She was really starting to understand the whole Santa thing this year, but wanted nothing to do with sitting on his lap. She would wave HI to him from the second floor at the mall but that's was as close as she was getting. We had a busy day on Christmas...Mom Mom, Pop Pop, Uncle Jamie, and Aunt Cheryl came over in the morning to see Morgan open all her presents from Santa...shortly after that was done we went to Mom Mom's for Christmas lunch with Aunt Marcie, Uncle Luke, Tyler, Kacie, Megan, and Grandpop. Morgan got her awesome art desk from Mom Mom and Pop Pop! We just kept moving,after that we headed to Grandmom and Grandpop Slaymaker's house for Christmas dinner...Morgan got her bitty baby twins there, she just loves her babies! We were all so exhausted, but it was a great day.
Nov 21, 2008-we went to CHOP in Philly for Morgan's Speech therapy and mapping. We first started with the speech therapy at 9 am, we got taken back right away. Morgan's teacher Sherri from Clarke came with us today, and let me say thank goodness for her being there or it would have been a total disaster. She is the best!! Sherri came with a big bag filled with a bunch of toys and listening games. I need to remember to do that for the next visit. Marybeth was her speech therapist today...Morgan is a little on the shy side when she first meets someone and it takes her a little while to warm up, and unfortunately there is no time given to warm up. They take you back and start drilling right away. They were asking Morgan questions about pictures that I didn't even know the answer too. One was a picture of a girl and a boy both in rain coats and boots with hats on..."Morgan which one is the boy?" My gosh I couldn't even tell. Another one was a boy with and umbrella standing in a rain puddle, a boy on a bike, and two other pictures, I can't remember. The question was " Morgan Paul's shoes are wet, whats it doing outside?" I was like oh my gosh this a 2 yr old we are talking about here. So needless to say I walked out of the speech therapy room a little disappointed because I know Morgan could have answered, and done a lot more for this therapist is she wasn't so rushed and knew her a little better, I didn't know how she was going to score. As we were walking out to the waiting room where my Mom was waiting for us Sherri kept assuring me that Morgan did great and that we know her better than anyone, and we know what she knows how to do. Sherri was a great peace of mind, as my Mom could tell I was ready to cry. While we were waiting to get mapped Marybeth came out to us with Morgan's results. Expressively Morgan measured at a 2 yr 6 mo old....right at her age level and receptively she measured at a 2 yr old which is right were she should be for that. Pretty awesome that she was able to make up almost 2 yrs worth of language in a years time. After the test results I was feeling a little better, even though the therapist had some things she wanted to watch for, like a nasal sound, and the repeating questions. I figure for the first year of her life we were trying to get her to repeat everything and now we don't want her to...geez. Overall Morgan is doing EXCELLENT! I am so proud of everything she has done. Shortly after Michale Jackson her audiologist comes to get us. We started in the booth. Sherri, my Mom, and myself were all in the booth with Morgan. Michael gave us a huge bucket of Mr. Potato head stuff. Yet again thank goodness for Sherri and her bag of toys and expertise. Morgan first started with her listening check which she did very well at, next Morgan had to repeat the sounds that Michael was saying from the other side of the booth through the two way mirror...Sherri pulled a play microphone out of her bag and Morgan sailed through that one too. Next Michael dumped all the potato head pieces out and there were so many parts. He wanted her to put the different pieces in the potato head. I was very sceptical as Morgan does not play with Mr. Potato Head very often, and with the million pieces to pick from it was hard for even me. Thanks to Sherri after a bit she decided to put Mr Potato Head together and then ask Morgan to take the particular part off that Michael asked her too. She did awesome at that. Finally done the booth. Then we went in to be mapped...not many changes where made as her programs were pretty good. Michael was able to alot of testing due to Morgan being so cooperative and doing really well with the listening game. Sherri had a puzzle in her Mary Poppins bag and she played the listening game with Morgan using the puzzle. The listening game for those that don't know is where Morgan would put the puzzle piece or a block etc up to her ear and listen for a sound, beep, ling sound, almost anything. When Morgan hears the sound she puts the puzzle piece in the puzzle or a block in a bucket etc. or they may do ling sounds like "ahhh" "eee" "sss" "shhh", and then Morgan repeats what she hears and then puts the puzzle or block piece in. See all this repeating they want her to do and now they don't want her to repeat things....lol. After about three hour of being at CHOP and Morgan being on her best behavior we took Morgan out to lunch and did a little shopping!
Sorry its been so long since I last posted...Well on Nov 20th, 2008 Morgan went to see Dr. Germiller (our favorite Dr.) for her regular check up for her tubes and her implant site. Our appt was for 9 am and we were not taken back until 9:50 am...so much for getting an early appt so we wouldn't have to wait long. Morgan's right tube is out and the left one remains in, thank goodness. We have had and ear infection at the end of Aug and in the beginning of Nov in that right ear, lets hope we don't get to many more or we will have to have another tube put in. The implant incision looks awesome...you can't even see it! That was pretty much it for that appt. we don't need to be seen for another 6 months.