CDSA & Fantastic news! :)

So the CDSA came yesterday, they are the Children's Developmental Services Agency. That is where I worked when I graduated college. They provide early intervention services to children who have or are at risk of having developmental delays. They will be with us until Lillian turns 3. If she ends up needing speech therapy that is who it will come from, although I hope she wont need it. This visit was for initial paperwork and next time they will do a full developmental evaluation on her, usually this is to determine if a child qualifies for their services, but since Lilli has a diagnosis she is automatically eligible. Since she already qualifies I could decline the eval. I already know she is advanced (not being biased, she really is our other therapists say so too) but we are going to go ahead and go through with it to see how she progresses over time. They will be done every 6 months. We also got a call from Dr. Tom (the audiologist) yesterday saying that they FINALLY got the denial letter needed from our insurance company to submit all of the paperwork to the state. He submitted it yesterday and we are just waiting on that to come back and that agency (NCEI-DHOH see previous blog if you need a refresher) will pay for her hearing aids. :) YEY! It could take up to 30 days for that to come back, but I am praying for about 2 week turn around time, we(yes we, I get an ear mold too) get fitted and then it will be about a week and she will have her new baby ears!! If you are wondering why I get an ear mold it is so I can check her hearing aids to make sure they are working properly and sounds arent too soft/loud etc. I got our EOB in the mail today showing our denial, the total cost for her first pair of HAs is 3000 dollars, that is CRAZY!!! What sucks is so many people out there do not know about the agencys out there to help w/costs. Also, they only cover through age 3. There is another program we will be admitted into after that, and that covers costs until she is 21. Hopefully by then there will be other options similar to the BAHA (Bone anchored hearing aid)which can be done at age 18. Another sad part to this is that hearing aids are crazy expensive and NO insurance companies help w/the cost. As of Jan 2011 they will be required by law to cover for people under 22 but still that leaves so many people stuck w/ crazy costs just to help them hear. The health care system is so messed up, I dont care who is in office and what promises they make, insurance companies rule the world. Whether it is hearing issues, other conditions even birth it is wacked out! While I am glad we decided to have a hospital birth, I understand why my cousins say homebirth is cheaper and birth is truly a business when done in the hospital! Anyways, that is my political/economic soapbox. I could start a whole different blog w/all my theories regarding those issues! LOL Anyways, back to the subject at hand, it is a hurry up and wait process but we are almost to the end of the first part of this journey. After we get her new ears, we have a whole new world that will be opened up to all of us! Again I cannot tell all of you how much each of you mean to us, how your prayers and encouraging words get us through the times that can be a bit challenging and how blessed we are to know that the Lord chose us to raise this wonderful little girl! It brings tears to my eyes to think of how far we have gone in these short 15 weeks and how I love her more and more each and every second! I cannot wait to know she is hearing me LOUD AND CLEAR each and every time I tell her I love her, which is like a gazillion trillion times a day!

Seriosly Blue Cross...

Any other time we would do something and try to have insurance cover us, the insurance company would be super fast to send us a denial letter, now that we NEED them to deny her hearing aids they are taking their sweet time getting back to us. I am contemplating calling them today, I am ready to get this show on the road and waiting on them feels like eternity!

Audiogram 1 in human terms

I am not even going to copy the original document we got from the dr because it is just a bunch of squiggly lines. This is the results of Lilli's BAER that tells us what she can and cannot hear. It is color codded left ear, right ear and both ears combined. Notice the flat lines, which means it is SUPER easy to fit her for hearing aids. The flat lines mean that she can hear everything, it just has to be amplified. If they were wavy it would mean her new ears would have to be adjusted to amplify certain sounds and not others and increase pitch/tone of certain sounds. According toall the professionals this is beautiful and heavenly to look at :) The banana in the middle is actually called the speech banana. It is where the sounds of the english language fall. Some sounds are easier to hear then others so Lillian can hear those sounds with out us having to be loud its just to her they sounds like a whisper. The louder we are the better she hears everything. Again, I am now thankful our family is naturally loud. Another thing to note is that since sounds travel in waves it is a much shorter distance from 20-30 decebles than from 50-60 The pictures on the graph is a guide to show what sounds fall in that range. To better illustrate this concept notice the kitten purrs at about 20 decebles and 175 hertz while a large dog (like ours who always wakes her up when he barks) barks at 80decebles and 2000 hertz. The black drawn in line at the top is where her HAs will bring her hearing up to, which is very actually a bit above "typical" hearing. Sorry if this post has been nothing but a boring science lesson for some of you but to us it is so great to be learning all we can to help our tiny as much as possible! :)

NCEI-DHOH TOO many acronyms!

Today a lady named Kristen came to the house to do an initial home visit. She is an early interventionist for the NC Early Intervention Program for Children Who are Deaf or Hard of Hearing. What a mouth full! Today we just talked about our concers for Lilli and her role in our lives. She will come out to do a form of play therapy that is speech based (but not speech therapy). She is an expert at teaching parents the right way to interact with a child who wheres hearing aids. ALthought it is very similar to interacting w/ a typical child there are many differences, such as the TV cannot be on while Lilli has on her HAs unless she is watching TV bc the hearing aids dont know when to filter out the TV so that she can focus on who ever is talking to her. Also, teaching her to leave them alone, which is the most challenging part of pediatric HAs. I am very excited to have Kristen on our team, while I am very familiar with early intervention, my degree focused more on over all delays and I am finding out more and more every day that pediatric auidiology is a field all its own! My mom attended the meeting today too. I was glad because she got to ask some questions that had been on her mind. We also talked about how to help some of our family members "digest" the fact that Lilli really is hearing impaired. She said that it can take longer than a year for some people to accept it. Kristen also said some people, even parents never fully accept it and that only hurts the child because they dont ever get what they need. :( I expressed to her my concern that some of our family experiences diapointment repeatedly because they hear a wonderful shiny story about a child who needed hearing aids and now they dont. We have heard these stories a few times while going through testing and each time I had to watch as my husbands hopes were crushed as well as the hopes of other close family members. I guess I have just been praying for the best and prepairing for the worst. Dont get me wrong in the beginning I was devistated and had a why me attitude, but quickly the Lord changed my heart and showed me that He has a plan for us and I know now that in a weird way the Lord is giving Tony and myself such a compliment by trusting us to raise this sweet baby! I continue to pray every day that her hearing improves, however, I know that if it doesnt, it is God's will and something crazy amazing will come from all of this. Kristen, who expressed her faith once she knew we were both Christians, said she feels the same way. So far everyone on our team seems to be a Christian and that brings joy to my heart as well! On another note, she told me that Lillian is advanced for her a typical child age and VERY advanced for a child w/a hearing impairment! I cannot lie, that made me smile from ear to ear! :) We have "homework" each week however we have compleated the first 4 weeks worth before we even knew it was an assignment. It is to make sure we are w/in 3 feet of Lilli when speaking to her. The other is to provide her w/2000 words a day. Typically developing children learn to speak by hearing 1000 words a day and HI children need double that to keep up. Good thing she was born into a very loud and talkative family :)

Beginnings

So Tuesday a lady named Dianne came out from a program called Beginnings. It is a program that is for parents of chidren who are deaf or hard of hearing. She was super nice and knowledgeable. She has a son who has a hearing impairment, ironically her older son played baseball w/tony in middle school. Talk about a small world. Tony was so wonderful about being here for the meeting even though he didnt want to be, not because he doesnt care but because he has a short attention span and knew it would be kind of long. I cannot lie, the first part was pretty boring while she was discussing the anatomy of the ear and how hearing works. She did help us learn to read an audiogram and other hearing tests and plotted Lilli's hearing on a chart that is much more explaitory. I will post it as its own post later. She also talked about communication options for Lilli, obviously we chose oral spoken language, however for children that are more severe they can connect those parents w/people who do ASL or expressive sign language. Dianne was actually part of my inspiration for starting my blog in the first place. She told me I needed to find an outlet for my feelings and I thought this would be good too because then everyone can be updated at the same time, plus now when you google it will pop up and maybe we can be an inspiration for other parents going through the same thing. Dianne wont come back out to the house for a year unless we ask her too. SHe will keep in touch by phone or email but unless she quits or retires she will be our parent support person until Lilli turns 22 :) If you want more information on the program feel free to visit http://www.ncbegin.org/index.php

Dr. # 4 our perminate audiologist

On this day we met with Dr. Tom. I cant even pronounce his last name much less try to spell it. We chose Lillis tiny hearing aids, her daddy and I call them her new ears :) They will be pink and the tubing and ear molds will be clear w/pink glitter. We are waiting to get fitted for them because the state is paying for them (Lilli Tony and myself say thank you to everyone who pays their taxes!) But before the state can cover the cost they need a denial letter from our insurance. That is a soap box I cannot even begin to get on because insurance companies dont see hearing aids as medically necessary, however they covered all the unnecessary drugs I used in labor?? IDK Anyways, Dr Tom will be our forever doctor unless he moves out of the state for some reason. He comes highly recommended and is a pediatric specialist! :)

Thank God I went to college for this LOL

Much to many people's surprise, the state of NC has WONDERFUL programs that are free or very little cost to parents of children with disabilities (although I wouldnt consider my child disabled). They are therapists that specialize in many different fields and help parents and children overcome whatever challenges they may have. In my previous post I mentioned our personal audiologist, before her we had a speech pathologist who introduced us to the NC Early Intervention program for children who are deaf or hard of hearing. I must also say that all of these women so far have blown me out of the water with not only their knowledge, but their passion for the kids and families they serve. We will also be working with the Chidren's Developmental Services Agency to ensure that Lilli meets her milestones in other areas where some children w/ hearing loss have problems, ie Speech and walking. I honestly feel that while this isnt what any parent wishes for their child, I know that God knew what he was doing 6 years ago when he guided me into the birth-kindergarten special education department. He was preparing me for this day, the day I realize that I am going to have to fight for my daughter, be her voice, and advocate for any services she may need! Lilli will have an interventionist coming out every other week to do play therapy with her for now, and if needed more services as she gets older, such as speech, just to make sure she develope appropriatly, although I know she wont need it because she is amazing and He is amazing! :)

Doctor #3 Another second oppinion

While we were on our family beach trip we met a very nice cousin of our cousin. She told us all about how her son went through the same situation and that we needed to go see her doctor because he was a pediatric specialist and that it may be the same thing her son had. I called and the office was great about getting us in before Lilli's first hearing aid visit the following week. To make this as short as possible, it wasnt her son's condition. Finding out that it was absolutely hearing loss wasnt the awful part of this dr visit. The awful part was having to physically restrain my sweet screaming child while they clipped her frenulum (the skin under your tounge) because she was toung tied. WHile this is a very common procedure it was heart breaking, she cried and bled and it was just horrible. On our way home I called our CHAC (child health audiological consultant) who will be our personal (and free) audiologist from the state and let her know that the tests confirmed everything.

Dr. # 2 BAER test

So, the BAER is a brain stem auditory evoked response test. It is a test that requires electrodes to be placed on a babys head, tiny ear buds placed in the ears and a sound is emmited. The electrodes pick up brain waves responding to the sound. This is the most accurate test they can do on a child Lilli's age to find out exactly where her "sound threshold" is. Oh yeah, they have to do it while she is sleeping! That was the hard part. Going in on day one, my mom went with me. This was to ensure she stayed awake in the car so that she was extra tired when we got there. It was pretty challenging because the receptionists at Carolinas Rehab were not that bright and made us wait downstairs instead of calling up to see if we could come and by that time Lilli was down for the count, noting I could do would wake her up. The audiologist was AMAZING! She was super nice and I loved that she didnt beat around the bush (we will talk more about this in a minute) She got the sensors on Lil's head and the things in both of her ears. She began the test and Lilli woke up half way through. Thankfully the computer automatically saves every 10 seconds so we didnt have to start over. Edie (the dr.) told us when Lilli woke up that she was detecing a moderate loss. This was honestly a relief to me. No its not what I was praying for, but FINALLY I had an answer to the questoin at hand. While mom and I tried to get her back to sleep she pulled the sensor out of her right ear so we just continued to do her left ear and Edie said I could come back first thing in the morning to do her right ear. We found out that day that in her left ear she could hear at 60-65 decebles in all pitches and tones. This was good news because that makes it very easy to get hearing aids right, she just needs amplification. Day 2 my wonderful sister in law went with me to help keep Lilli awake. I must add that Jenna is a wonderful sister and is always very willing to help when it comes to her sweet nieces! The test was the exact same, lilli stayed awake longer so we were able to do confermatory tests, I cant lie I dont remember what they were called. Her right ear was a little better 55-60 decebles. Praise God my daughter can still hear us talking, but to her it just sounds like a whisper. Tony took the news much better then I had expected, I think we were both just releived that we knew something more concrete.

Same Dr. Same Answers

So, finally the time came to have Lillian retested. They did another OAE and also a tampenometry test ( which checks to make sure there is no fluid in the ear). Again, you all know the results, she didnt pass. Again, my mother in law had gone with me, just for moral support. While they were doing the OAE I watched as she prayed silently beside me. For some reason the news this time while not what I wanted to hear, wasnt as heart piercing as it had been in the past. I guess unknown to anyone else, I had prayed that if there was a problem that the Lord would give me peace about it as well as strength because I knew in a situation like this Tony was going to be very heart broken. He is such a protector for this tiny child and this is something he cant protect her from. Anyways, we met with the ENT after the audiologist preformed her tests and he said not to freak out. She obviously hears things because she startles and wakes to loud sounds. He recommended a more advanced test that would show exactly what she is hearing. We tried to get in w/Charlotte EENT but would have to wait until August. That simply wouldnt do for me. I wanted to know at that exact moment, so that if we needed amplification (aka hearing aids) we could get them ASAP so that her speech will not be delayed. We scheduled a BAER (brain stem auditory evoked response test) for that Thursday.

While we were waiting

Short and sweet, Over the course of the weeks that we had to wait to retest Lilli, she was showing signs of hearing some things. Tony would clap while she was asleep and she would startle, the dogs barking would wake her up. We continued to pray everyday, however we were certain she would pass the next OAE.

ENT #1

So, Lilli was 3 weeks old when we went to our first ENT, Dr. Phillips, who I highly reccomend if you ever need an ENT. He was so nice and their audiologist was super sweet too! They did what is called an OAE (otoaacoustic emmissions test). This is where they stick tiny buds into your ears and emit a sound. The buds also have a microphone on them and can measure the echo of the sound in the ears. It can only tell if someone is hearing normally, it doesnt give a range of hearing loss. Again, our sweet girl didnt pass. Dr. Phillips was very nice and informed us that this is again sort of normal. He told me and Tony that we would retest her in 3 months and see what happens, if she still didnt pass, we would have to have further testing. We were still upset about the results. We prayed every day, probably every hour for the next 3 months.

The day from H-E-double hockey sticks

So my mother in law came to take me to the lactation consultant a week later. First of all, for people in their field, they were AWFUL! Not the warm and fuzzy kind of people that I was expecting at all! I was running on about 2 hours of sleep (bc Lilli wasnt sleeping then bc I wasnt giving her enough food) and had major postpartum hormones going on. They redid her hearing test and she "referred" again. These women led me to believe that my child was stone cold deaf! I was horrified. I had a complete and total melt down right there in the office! Thankfully my mother-in-law was very comforting and supportive, she prayed for us and just tried to keep Tony and my both very positive. After this horrifying even I immediately called Lillian's doctor to see what we should do next. She referred us to an ENT.

The beginning

Lillian was born on April 14th at 7:47pm. She was born via c-section due to having a high heart rate and being posterior. After 8 hours of medication free labor I opted for something to take the edge off. While I am not proud to admit it, I hadn't been that high since college! About 2 hours of that stuff it wore off and just wasnt doing the job any more, I felt AWFUL and the contractions were killing me. I chose to have an epidural. After 3 hours later I tried to push and it just was not happening. She was staying in and her heart rate had shot into the 230's. My midwife also told me I would be pushing for a while since she was face down. We went in for Cesarean. By this time I was strung out and since I tried not to hit the boost button during labor, I felt a good bit of everything. I vaguely remember them showing her to me before she and Tony went to the nursery. I passed out while the doctors were stiching me up and woke up in so much pain when moved from the OR table back to my bed, if I could have hit a button to die at that moment, I probably wold have. I dont remember much of that night except thinking I want McDonalds chicken nuggets, a diet coke and where is the Mac-Truck that ran me over? Thankfully a wonderful friend was there to take pictures :) The next morning was much better. I realized that no, it wasnt a dream, I am really holding a perfect beautiful tiny girl! :) We spent the day visiting w/friends and family. I was amazed at how much I could love someone so quickly ( I am still amazed how every day I love her 10 times more then the day before) That night after everyone had gone, the nurse came in and said they needed to take her to redo her hearing test. I thought, thats weird but OK. When she came back she told us Lilli had "refereed" which is the polite way of saying she failed. She informed us that was totally normal w/c-section babies because they arent "squeezed out" like vaginally delivered babies are. She said at our lactation visit the following week they will redo it and she will more then likely pass. We didnt really think much more about it. The next afternoon we headed home to begin our lives as a family of 3.

How this is going to go

All of these memories are in my head forever, so, I am going to start at day one and go up. It will take me a few posts to catch up to where we are today, but I am going to try and get it done so that by next week everything will be current.