Ariana and Marlee Matlin

Ariana got a very special and rare opportunity to go meet Marlee Matlin last week! She was so excited and the envy of all her classmates! She even got her autograph! Marlee was speaking at one of the local elementary schools to the 1st graders. It was a rather intimate gathering, but Ariana and a few other hearing impaired children from the area schools got to attend which is so nice. Marlee's partner, Fabian Sanchez from Dancing With The Stars was there and his little boy happens to attend this school. I had no idea that her dance partner/instructor lived in Alabama! Who knew! Oh and by the way, he was very easy on the eyes I must say.:)

It's not everyday that a deaf or hearing impaired person gets to meet another deaf person that is so successful and famous. I truly believe that one event such as this could change a child's life. Life is a journey! Along the way, you will meet many people, and you might just meet one person in a brief moment of time that could forever change your whole course in life.

I am so thankful that Ariana was allowed to go meet her. I hope she learned that there is nothing that she can't do if she puts her mind to it. It doesn't matter what your beliefs are, how you communicate, rather you are oral or use sign language, have Cochlear implants, hearing aids, or nothing. All those young kids and Marlee are my heroes. They all know what it's like to be deaf and they embrace life and try to live it to the fullest. God makes us all different for a reason so that we can all touch someones life along the way.

Life

Life has sure thrown us some curve balls lately. It has been a long year with lots of obstacles to overcome. Chase has been diagnosed with diabetes for a month now. It has been a long month filled with lots of learning, stress, and uncertainty. At first, it was a shock to learn our child that had never been sick or in the hospital had this incurable disease. The shock wore off and then the tears came when no one was around. Everyone says that is normal. I kind of went through a grieving process. Chase has endured countless injections of insulin. He got 4 a day and sometimes 5. He was always a trooper and checked his own blood sugar while still in the hospital. On Saturday he got his new pump!!!! It is amazing and no more shots for Mr. Chase!! He just told me a few minutes ago that he feels like his old self before he got diabetes. Oh and by the way, he won the foot race at a skating party on Saturday right after getting his pump. I said see, you can still do whatever you want despite diabetes!

I got some awful news on Saturday just minutes before the nice nurse came to help us put Chase's pump on. One of my very good friend's husband passed away in the early hours of Friday morning. It is so very tragic. I have known this friend most of my life and had just met her new husband last summer. They were only married 9 months. He was her soul mate and they loved each other very much. He felt like he had no choice but to do what he did due to circumstances that I won't go into. No matter what life brings your way, suicide is NEVER the answer. Our other friend and I are going to see her on Wednesday and the funeral will most likely be on Thursday. My heart breaks for her. He leaves behind 3 precious children from a previous marriage and 2 step daughters that are my friend's children from a previous marriage. Life is so short. This has brought back so many painful memories of my late husband. I know what it's like, but the circumstances are much worse in my opinion for my precious friend that I love dearly.

Ariana has been busy with tutoring this summer with a speech therapist that the school has set up for her to see to get her caught up on some academic stuff. It is going well, but she is sick of going. She goes 2 days a week for an hour. She also has participated in a speech therapy session that helps school based SLP's learn about AVT. It went well. Ariana also had a speech perception test recently that showed even more improvements. She never ceases to amaze us with her steady progress! It will be almost 3 years since getting her implants. It's so awesome due to her age, but she had been such a good hearing aid user for many years before hitting that wall. Thursday brings her regular appointment of speech therapy at her implant center. Hubby will have to take her that day. I will most likely be at the funeral and on my dear husband's Birthday. :(

Sorry I haven't posted lately (if anyone out there really reads this), but as you can tell, life has been a wee bit busy and stressful.

Blessings to you all!

OmniPod

Chase came home from the hospital last night! We were so glad to be home. We are trying to explain everything about diabetes to Joseph and Ariana.Some of the terms are great words for Ariana to learn. It's a very hard thing and we are still learning and will be for quite some time. Chase knows and understands that this is not his fault and that there was nothing he could have done to prevent this from happening. The Dr. is doing a study with the omnipod and wants to see how quickly newly diagnosed kids his age can resume back to their somewhat regular life with an insulin pump. She thought Chase would be great for the study. This pump is waterproof and has no tubing. It also has a PDA. You have to change and throw away the pod every 3 days. It's really awesome. We were so excited that she is offering us this amazing opportunity. http://www.myomnipod.com/ BTW...Nick Jonas, the drummer for the Jonas Brothers has diabetes and also has this pump

One more thing, there is so much to be thankful for. As bad as it is to hear news like "your child has type 1 diabetes", there are so many children worse off. It broke my heart seeing some of them at Children's. Some of them had no hair from cancer or leukemia or had brain injuries from an accident, etc. My heart and prayers go out to those families.

They had a VBS at the hospital that Chase went to. The topic was "thankfulness". When they asked Chase what he was thankful for he proudly said his sister who survived meningitis. I teared up big time. I think he truly has a new perspective about hospitals, illnesses, and learning to overcome obstacles.

Chase going bananas!

Prayer Request

If there wasn't enough on our plate...we just found out yesterday that our happy, always healthy, sweet son, Chase has juvenile diabetes. He has been having excessive thirst and running to the bathroom every 5 minutes. He is currently in the hospital and will be here until tomorrow or the next day. He will be okay, but will have to have 4 injections everyday of insulin for the rest of his life or until they find a cure. Right now we are all trying to learn all we can about this as a family. Please keep us in your prayers. My all time favorite saying is "Love is Pulling Together Against All Odds". I am so amazed by Chase and his outlook. He has not let this get to him and says "these shots are a piece of cake"! I hope this attitude will continue.

Great books for building vocabulary

I am working with Ariana a lot this summer on building her vocabulary even more. There are so many words that she may not have heard or understand what they meant before she got her implants. I got some great, but simple little flip books that make it so easy to learn new words! I am trying to use new words that I don't always use everyday. They have these little books at Books a Million or Barnes and Noble in the teaching section.

Bilateral Cochlear Implants

I knew it would eventually happen. As time went on, the material got harder, and Ariana's hearing was worsening a little. She hit that wall and we had to figure out how we could help. Ariana asked us once again about getting a CI. We didn't think it was possible, but her Audiologist thought that there was a good chance that she could be a candidate. We went to see Dr. Woolley at the end of her 1st grade year. She was already 7 years old, kind of late to be talking implants, but to her benefit she had language and some residual hearing. He ordered an MRI for both ears. By a miracle from God, she was a candidate! Both ears had ossification, but nothing that he said that he could not deal with. He felt certain he could get a full insertion of the regular array of electrodes into both ears. We were dumbfounded and knew that God was in control and this must be meant to be. We really wanted her to have the benefit of having two ears! God gave us two ears for a reason. He said that if we wanted to do the deaf ear that had not heard in almost 8 years, we had to do it rather quickly due to it was ossifying at a fast rate. We had UHC and they cover bilaterals. The implant center was uncertain if she should even have that ear implanted due to the nerve not being stimulated in so many years and it was kind of a long shot. Not to mention that she needed time to get used to one implant, much less throwing in two in the equation. It would never probably compare to the better ear that we were going to implant due to that ear had always had some residual hearing. But first things first, let's get the better ear implanted first and then convince them to do the other.

We had to wait until August 2005 to do the 1st implant. She had been on a waiting list to get into the AVT (Auditory Verbal Therapy) program at her implant center. Once she got in, she stopped going to her auditory oral speech therapist. The surgery went really well and he got it in! However, there was soooo much more ossification than he thought. Dr. Woolley was not aware of the amount until he got in there. He was scared. If it didn't work, she would be worse off than before. She would have no more residual hearing and could no longer even wear a hearing aid in that ear. The Dr. had to drill through pure bone. It went perfectly though, the healing was great, and all electrodes fired. It was about a month before everything started making since to her and she fell in love with her new way of hearing!!! At first she didn't even respond to her own name. Everything sounded so foreign to her. Oh, all the many, many sounds we take for granted! It brought tears to my eyes seeing her hear sounds that she never could pick up with her hearing aid before.

In November, 2005 a month and a half later at age 8, she got her 2nd implant to the ear that had not heard since she was a baby. It would have been better to wait awhile so that she could get used to the 1st implant according to her Audiologist, but time was not on her side. Dr. Woolley said "if we are going to do it, we have to do it now". In addition, our insurance was going to be changing after January and then it would not have been covered 100%.

There was more ossification in this ear than the 1st ear, but he had less trouble with this surgery due to he was so well prepared and equipped. He had a double array on hand in case he needed it. He got it in with the regular array! The road to rehabilitating this ear has not been easy. She tries to compare it to her good ear, but there is no comparison. However, she has made tremendous progress this past year and she hears so much better with two vs. one. For a long time, she was sneaking and turning it off...she didn't want to hear the world! The world was too loud! It really helps her localize and fill in the missing pieces of what is being said. She doesn't hate it like she used to either. She is doing so good and I am so blessed that she was given this wonderful gift to hear the world.

Pre-school and Beyond

Ariana's 1st year of school was at our church. We knew she needed something good to immerse her in as much language as possible and in a environment in which she could flourish. My husband was transferred and promoted. We moved to Plano, TX and lived there for 2 1/2 years. It was the BEST thing we could have ever done for Ariana. Plano has one of the finest programs for the deaf and hearing impaired in the country. She went to an oral deaf pre-school everyday, 6 hours a day for 2 years. She progressed like never before. When they tested her, she tested higher than any other hearing impaired child with her degree of hearing loss.

She went to school with lots of children with cochlear implants. It was an eye opening experience for me. They just seemed to flourish and progress much faster than the kids that did not have CI's. I was no longer close minded about them.

It had been so many years since meningitis and with meningitis, ossification forms around the cochleas. We knew that it would be a long shot that she would be a candidate for a CI, so we didn't try to pursue it until the day Ariana actually started asking us for one. So, we made an appointment with Dr. Peters in Dallas. He looked at all her records and said that he thought she would be better off just wearing her lone little hearing aid. Did I mention that she only had 35 % hearing aided? He didn't even bother to do a CT scan, he assumed due to the time frame that she would just have nothing but pure bone. So, we went on with our life and put the CI thought out of our mind.

We loved the schools in TX, but it just wasn't home! Our yard was a postage stamp and our kids are the outdoorsy type. My husband had the opportunity to come back to Birmingham, so we jumped on it. I knew that the school situation in AL would be hard and I would have to fight to get her what she needed, but I was up for the challenge and armed with knowledge on how to stay on top of things.

We moved back in the middle of her kindergarten year. She had already mainstreamed into kindergarten. It was a tough adjustment at first regarding what the school would offer her. They said that she tested too high for their scale and were not even going to offer her any services. I was outraged. I was not going to wait and then let her fall beneath the cracks. Just because she was doing good then, didn't mean that she would continue to, once material got harder and harder. Early intervention is the key. They ended up giving her what she needed. To not, would be to break the law. She was profoundly deaf for crying out loud!

Why we chose spoken language over signing

Ariana was not deaf. She had a hearing loss, but still had residual hearing. She ended up being an excellent hearing aid user. She never had that deaf sound to her voice. Her intonation was and is still beautiful. You have got to do what is best for "your child". No two children are alike. Maybe it helped that she was not born with a hearing loss. She heard while she was in my womb, she heard for the first almost 5 months of her life before getting sick, and who's to say how long it was after the meningitis that she may have heard. It may have slowly gotten worse. Studies do show though that once you have meningitis, it pretty much wipes your hearing out right then. How we were spared the left ear from being totally wiped out was a miracle!

We decided if we wanted her to be able to communicate with the whole world around her, we would have to engross ourselves in helping her with her speech and language wholeheartedly. We had already wasted so much valuable time. The early years are so very crucial. We had her enrolled already into private speech therapy in addition to being in a early intervention program. We had a private speech therapist that we loved at a very small privately owned speech and hearing clinic. We didn't start out in AV due to I had another child when Ariana was 2 1/2 and I wouldn't be able to take part in all the sessions. All my family lived in Montgomery. We chose the auditory oral route, but she has been in AV at Children's Hear Center for almost 3 years now.

Diagnosis

The ABR showed that she had a pretty bad hearing impairment, but we could not get anything definitive at that time of what her actual loss was. We ended up going from Dr. to Dr., specialist to specialist. They would confuse us so much. It kind of wouldn't match up to what we saw at home. Mind you, these were the early days of internet and people just didn't google everything like they do know to find out tons of information and anything you need to know.

In the meantime, we enrolled her in an early intervention program after moving to the Birmingham area from Montgomery to be closer to better hospitals, Doctors, etc. Pete had gotten very sick when Ariana was only 6 weeks old. He had been diagnosed with Crohn's Disease. He also needed to be closer to his specialist who was at UAB.

The early intervention went well. We were learning some sign language, but she was steadily progressing in her speech. We could tell that she would be capable of spoken language. She got fitted with hearing aids as well. Soon after her hearing loss diagnosis, Dr. Woolley said that she should get a cochlear implant.

At the time, cochlear implants scared us and for one we really didn't know how bad or good her hearing loss was. It was always different. She always heard Pete even without her hearing aids. What a confusing time.

We ended up going to Sparks and seeing John Wright. We walked out of Sparks that day and FINALLY felt like we knew what her level of loss was. Did I mention by then she was around 22 months old? I had been a long road. I can't describe that feeling. He said that she was profoundly deaf in her right ear. She could only hear the sound of a jet engine. That is why she would always pull off her hearing aids. That was a constant battle. She had a mild to severely sloping loss in her left ear. He said that we should take off the right hearing aid and just let her wear one really good programmable/digital aid in her left. The right ear seemed to be taking away from the good ear. We did that and from that day on, she never took off that hearing aid. She would wear it all waking hours and started making tremendous progress.

Hearing Loss Detected

We did a a hearing test before Ariana left the hospital. They simply stated that "it was not that bad" and that it was probably just fluid left from the meningitis. We took her home and she seemed so happy and healthy. No one would ever have thought that she had just been so sick and so close to death. She started babbling profusely in the following days and at that time showed no indications that she could not hear. I did not take her back for a follow up hearing test due to everyone around me told me that she could hear just fine. She always responded to my husband's voice. We knew nothing about levels and degrees of hearing loss and I figured if she heard his voice than she could hear period. Pete would joke with me all the time and say things like "she has selective hearing because she's such a Daddy's girl"! I can't tell you all the nights that I would get up with her to try to rock and sing her back to sleep, but to no avail. Pete would come out and he would sing to her for 5 minutes flat and she would be fast asleep...not fair! I still chalked it up to her being a Daddy's girl. :) BTW, he has always been the BEST Dad and so hands on. She even was saying a few words. I should have known better. She would say "Gaddy", instead of "Daddy". I also remember her saying "Mama", the most precious word ever, but only one time. We were on vacation when she said it. It always surprised me that she had only said it once.

We had a one and a half story house. Joseph and Ariana's bedrooms were upstairs. One morning when she was around 15 months old, I heard Ariana up,playing,cooing, and babbling in her crib. I went and peeked around the corner of her beautiful light pink room with teddy bears and tea set wallpaper border. It also had pretty light pink gauzy curtains. I loved that room. I just started talking to her. She couldn't see me yet because she had not yet turned around. I was saying her name and talking to her sweetly and she never even flinched or turned. I knew right then and there, she couldn't hear my voice! I immediately made her an appointment for a ABR to check her hearing.

Pneumococcal meningitis

The spinal tap results were that she did have meningitis. What strand she had, they did not know yet. It would take 3 days to grow out the culture to find out. In the meantime, they had to GUESS what antibiotics to give her. If they guess wrong, she dies. They did not tell us in the beginning how grave her condition was. When meningitis strikes, death can occur at any moment. The bacteria can also spread through your body to where it gets so bad, they have to amputate limbs to try to save one's life. It wasn't until 12 hours later, at midnight that the antibiotics FINALLY kicked in. She is a miracle. She had 3-4 seizures while in the hospital due to the fluid on the brain, but she was so very lucky. We found out on the 3rd day that she had pnemococcal meningitis. It's a very deadly strand. She beat so many odds. She survived, was not left blind, mentally retarded,did not lost limbs, and at the time we "thought"she has been spared from being hearing impaired. She was in the hospital for 12 days. It's hard to even think about it all these years later. I was so distraught, scared, and stressed on the 2nd day that the pediatrician gave me a prescription for valium. What Mother wouldn't be distraught? They are sitting there telling me all these things that could happen to my child and that she also could potentially have neurological problems when she gets older, but that we wouldn't know for sure until that time came.

http://www.meningitisfoundationofamerica.org/templates/

That Fateful Day,February 13, 1998

2 days before Valentine's Day in February 1998, Ariana our healthy baby girl got very sick. She was 4 1/2 months old. She was getting over her very first cold and her immune system was down a little. She was vomiting and had fever all night long. I alternated with the tylenol and advil, but it would only help for a little while. The next morning, she still was not feeling well. We were sleeping in the living room due to Pete was painting our bedroom. We had Ariana sleep with us during the night due to her being sick. We put her in her swing that morning and a few minutes later we looked over to see Ariana pale and with a strange, lethargic look on her face. The warning bells went off and we called the Pediatrician immediately.

All we had to do was mention the word, "lethargic" and the Dr. said, "how soon can you get here"? She met us at the ER. When she first looked at Ariana she didn't think she looked that bad. She told us to hang on while she made her rounds and then she would come back and check on her. Right before she came back, Ariana's condition worsened. She was crying and not wanting to hold her head up.

The Dr. came in and took one look at her and immediatley said that she thought it was meningitis and that they would have to do a spinal tap right away. She said if it was indeed meningitis, she would have to be in the hospital a minimal of 12-14 days and they would also have to figure out what strand she had. They whisked her off and we stood there shocked and terrifed to say the least.

The Beginning

I'm so excited....this is my very first blog! Well I think I shall start in the beginning. I will try to give you the shortest version possible, but I must warn you folks, it's somewhat of a soap opera! I want to give you history of what life was like before my little angel, Ariana came into the world and we embarked on our long journey to bilateral cochlear implants.

I got married when I was 20(yes I was a baby) to a wonderful man who made me laugh and could light up any room he walked into. A month later, I got pregnant with our precious son, Joseph who is turning 13 (Yikes!!!) this month. Rob and I were not planning on him so soon, but we were so happy nevertheless. We found out we were having a boy, named him together, planned for his birth, and were in the middle of a move when Rob passed away very suddenly with no warning. I was 5 1/2 months pregnant. He was only 29 and about to graduate from Life Chiropractor School in Atlanta, GA. It was so devastating, but I thanked God for leaving me with part of him that would live on and his son would be his legacy. I felt like everything happens for a reason even though I couldn't understand any of it at the time. It's no walk in the park to bring a child into the world with no Father present due to a untimely death. I had my Mom in the delivery room with me and lots of family and friends that gave me support during that time.

When Joseph was one, I was pushing him around my apt complex on a tricycle when a dog came out of the middle of nowhere and knocked my son to the ground. His owner came running, looking appalled and mortified, and thinking his dog was mauling Joseph to death. He was actually licking him to death and Joseph loved it! The dog's name was Gator and his owner's name was Pete. We started talking, hit it off, became friends, and the rest is history. Pete later became my husband, the only Daddy that Joseph has ever known and the Father of my other 2 children.

When we got married, we decided not to wait a long time before we had a child due to we wanted Joseph and his sibling/siblings to be close. My sister and I were 7 years apart. It was so hard for us to be close. 3 months later, I got pregnant with Ariana. I prayed for a little girl and that's exactly what I got. She was born 2 weeks early on September 29th, 1997. She was a very healthy baby and weighed 7 lbs. 2 oz. Did I mention that she was also born with perfect hearing?!? In my next blog, I will tell you about the fateful day in February 1998 that forever changed our lives as we knew it.