Sunday, August 2, 2009

100% chance of crazy!

So...this is the home stretch...today. Starting tomorrow things start to get really nuts! Orientation for the kids, soccer camp for the boys, a trip to Birmingham and a hockey tournament at the end of the week. WHEW! Then Monday morning the following week the kids have their first day of school so we are gearing up for that as well. I have so much work I have got to get done next week....its looking pretty ugly...hopefully we have a few weeks before the soccer/fall baseball practices start.

Molly is on her highest sensitivity program the audiologist set for her and is doing great. She is asking for her receivers as soon as she wakes up. No complaints from her at all. Now we start the loooooong road of speech therapy but she is so smart and will do well. She is starting to turn her head to sound a bit more and more each day. I cant imagine where we will be in a few months. This is the fun part.

Now we are off to church and our Sunday night hockey game.

Friday, July 31, 2009

Mollys Activation

video

Hey Sports Fans...we are back and all is well. Molly's activation was just as we expected...small reactions to the sound. She didnt, as Rob dreamed the other night, immediately start speaking to all of us and with a British accent. My husband is crazy! ( or watching too much Family Guy) I video taped both mappings and just edited out a small segment. Because she had some hearing with her aids, we didnt get this HUGE reaction to sound but she did get a little uneasy which is obvious when she looks down and puts her fingers in her mouth. That is about as uncomfortable as she got. The day after we got the implants she cried for about 15 seconds and the next day about 5 seconds. Today...nothing...she is actually excited about wearing them and is anxious to get them on.

We are slowly bumping up the sensitivity...did so today and she didnt blink. She also will turn her head to her name...so Im a little surprised that we got that so soon. I didnt expect to get that for a few more weeks. Anyway... there is a lot more to tell...but who has the time? The boys were scheduled to stay with a sitter who got the swine flu so they came with us. We turned it into a little family vacation which was nice and the boys were actually fairly well behaved...fairly..not perfect.

We will be heading back to birmingham on Monday morning and then Molly has her shots later that afternoon. Big week next week getting ready for the new school year...more to come.

Tuesday, July 28, 2009

Tick...tick...tick....

So today I moved all the living room furniture into the kitchen and was shampooed  ( when you have three kids...two of them being dirty filthy boys you tend to have to shampoo your carpet quite a bit). Especially when you have found out that your five year old has been assuming he is way to busy to walk allllll the way over the bathroom and thinks that if he pees right where he is standing that no one will notice?  Seriously J?   So during my carpet cleaning adventure ( by the way, I bought a Bissell lightweight deep cleaning carpet cleaner for $80 and I love it) I have already deep cleaned the entire upstairs, my office on the bottom floor and the living room and my carpets look and smell as good as if I had called a professional company.  Just FYI.  As I was saying, while cleaning the living room carpet, I looked up at the clock and it read 3:52pm. My heart immediately skipped a beat. We were less than 24 hours out and I imagined us 24 hours from then sitting with the audiologist as the tested Mollys implants and R and I watched her reaction to sound...at least what she got out of it.

Our plan was to leave the boys with one of our favorite sitters, but a huge outbreak of the flu has hit all the teenagers we use since their return from a church youth trip ( including the youth minister) so it appears now as if the boys will be coming with us for the day.  Am I worried? Yes, a little. I really want to be able to focus all my attention on Molly...and not have the distractions of a 7 year old and 5 year old fighting over which Mario DS game they are going to play with first. But seeing as we dont really have any options, we will just have to go with that.

Should be an exciting day! Thanks for all your support on both the blog and facebook. I will do my best to get news posted as soon as we get home tomorrow.

Monday, July 27, 2009

two days until the new normal

So it is Monday morning and Molly is strolling around playing with Legos and sticker books, extremely impressed with how her new overalls work.  She has no idea that in two days a small team of very impressive women are going to stick a couple of magnets to her head and she will hear...really hear for what will most likely be the first time in her short little life.  Rob and I continually remind ourselves and others that this isnt the simple case of turning her hearing on like the mute button on the TV, yet I am looking forward to this day with as much excitement and nervousness as I did Gotcha Day ( for those not familiar with adoption slang, Gotcha day is the day that you receive your child...yes, a crude term...but an easy one).    So if  expectations are so low, than why all the excitement? Well, it is the new normal really...and the beginning of the next part of her life...she will be learning to hear....learning to speak and before the implant there was really no hope for her ever doing that.  This entire year has gone so fast... I cant believe it has almost been a year since we first found out about Molly.  We chose that day as her birthday so we will get a chance to celebrate it every year which is the only really benefit to her not knowing her actual birthdate. ( that will continue to drive me crazy for awhile, I suspect).

So as summer break winds down and the boys and Molly for that matter get ready for the new school year we do look forward to what Molly will be able to do and what she will learn in the next few years....excited...and anxious all at once.  I cant wait for her to experience music. That was something she really enjoyed with her minimal hearing and I know she has missed it the past few weeks.  How things are going to change for her. It has been amazing to watch.

Now I have to wrap up my procrastinating for the day... I still want to clean out my office, shampoo the downstairs carpets and I do have some actual work to do.   Back to the real world....at least for now.  Thank goodness for Sunday night hockey and wednesday for that matter. It has been great for stress relief and a nice break from thinking about activation. Rob said it best last night as we were walking down the stairs after checking on the kids.. "We have ourselves a pretty great little family here" And he is right..even with the pointless drama that has tried to infect our lives over the past few months,  it has been easy to write it off and move on with our perfect little family here.   I love our life here!  Now I am off to do something I am really good at....more laundry. Too bad it isnt a sport.  

Wednesday, July 22, 2009

Countdown to activation

So it has been a little over a week and Molly is doing just great. We made the trip up to see the surgeon and get the final OK which we did. More exciting than the fact that she is healing quite nicely is the fact that we got to wash her hair....finally! No scrubbing the sides...but at least we can get that area wet. Molly hasnt complained about the "ouch" behind her ear for quite awhile so we are hopeful that the worst of it is behind us. Rob and I are both in a week long hockey clinic so every night we have been spending two hours on the ice which has really helped time pass as we get closer to her activation day next week. We go in with "high hopes and low expectations" I read that somewhere and that pretty much sums up what we were told to expect. I know there are a lot of followers out there that believe that implants are like flipping a switch ...similar to turning the MUTE button off...but that really isnt the way things work. The brain has to have time to adjust....to learn HOW to hear and then how to associate that sound with meaning. Molly will do great...she has been through so much that we really think that this will be just one more experience that she has had.

This past Monday we had the opportunity to readopt her and file for her American birth certificate. Because the International Adoption Clinic disagreed with the birthdate that China had assigned to her ( Molly was not left with a note from her birth mother as to what her name or actual birthdate was) we chose a new birthdate for her. We also picked a new middle name as well. Her name was given to her, not by her birth mother which we would have undoubtably kept, but by a random doctor on duty that gave her a physical when she was found. Honestly, we may have even kept that but it is unpronounceable by the western tounge...so Rob picked a name all by himself and he got to name his little girl...her middle name is MeiLi. Here are some photos of our readoption ceremony. The boys were a little disgruntled about being forced to wear a tie...but we all survived!

  Molly and Daddy




                            The boys are tired, hungry and hate wearing a tie. I dont blame them.


Our attorney and friend. What a terrific guy to take care of this. The judge let the kids sit at his special judges table. Molly didnt seem to appreciate it as much as the boys did.

Thursday, July 16, 2009

Bouncing Back...

Here we are...and Monday seems like it was months ago really. The blue neoprene strap is now removed from her head so that her incisions can get air I suppose. She doesnt really seem to even k know they are there. She is running around , playing and singing as usual. Mom is a little overly cautious because she clearly is NOT.  As superficial as it seems I was really dreading the "shaved head" part of the process. We have been growing her hair out for 8 months now and really got to the point where we could do a lot of different things  with it.  It actually isnt going to be as bad as I though and should be covered up nicely as the hair that was shaved grows out. I know, who cares about hair?

Next week is her readoption ceremony. I know, bad timing with the surgery and the photo ops at the courthouse. We could have done this through the mail but wanted to involve the boys in the process. We will go down...I suppose the judge will say something...maybe bang a gavel or two..who knows...and Im sure we will sign something and our girl will have a birth certificate from the state of Alabama.  Giddy up.

Today is a rainy day and Im sure the kids will be driving me  crazy in the next few hours. I am moving offices and continuing my attack on the house. I have the kids rooms organized and cleaned out as well as the utility closets and bathrooms. Just the office and dining room left to do. There is nothing quite as satisfying as an organized room. They dont last as long as I would like but it is fun while it lasts. I dont have junk drawers...cant stand them...so it is harder to maintain without one. Who am I kidding. I will need to start the whole thing over by next year.

Wednesday, July 15, 2009

We are home!

Well, we survived our first night and thankfully Molly hasnt been on anything stronger than Motrin. We really didnt want to have to give her the stronger stuff because it makes her really nauseous and the name of the game right now is to get her to eat!  She did finally start eating last night....of course, it was her favorite Ramen. Thank goodness it is so cheap...at 17 cents a bag, she can have all the ramen she would like.

The entire surgical process could not have gone any better. Of course, with the struggles to get to the actual surgery, Rob and I were really anxious and told each other that we were not going to take anything for granted that day if the surgery was cancelled or if she only got one implant.  We were ready for anything....anything but what we got. A seamless surgery and an incredible stay at this hospital with the best nursing staff I have ever run across ( and with four knee surgeries, and two babies I have spent my fair share of time in a hospital).

We arrived at the hospital at 9am as we were told to and sat in the waiting room for close to an hour before they called us back. They did the preliminaries with Molly...height, weight...blood pressure, etc. The entire time she was so happy...unaware of what she was about to go through. They brought us back to a room and had her change into a gown. Still clueless, Molly was jumping around on the bed and posing for photos with her daddy.







This next part is my favorite part of the story! Rob and I were so nervous about this surgery...as most parents would be and a lot of it had to do with anesthesia. Sure, people go under all the time. But we know nothing of Mollys history prior to eight months ago and had no way of knowing how she would react to the anesthesia! Without a birth history on her the idea of them putting her to sleep made us a little crazy. Sure wish we would have had a friend in the operating room. Well, a few weeks prior our friend and pastors wife told of us a very dear friend of hers who was actually named after her very own mother who also happened to be an anesthesiologist at this hospital. What are the odds that our doctor was going to be this same woman? Not good...but in walked Dr. B and I asked her if she knew my friend and she did. It was her. Rob and I had a mutual friend, not only in the operating room, but the woman who would be responsible for putting her out! Obviously, Dr. B would have done a tremendous job regardless of whether or not we knew her friend or not, but I am not going to lie and tell you that we didnt both breathe a lot easier knowing she was there in the room for us. ( no pun intended)

Fast forward from the best part to my least favorite part. They wheeled Molly on a gurney down the hall to the a small read tile section and the orderly told us that we couldn't go any further. Okay...so here we go. Rob leans over and gives her a kiss and I do the same and then I sign to her, Mommy and Daddy Later and she gives me the most confused look I have ever seen. Normally this means that a sitter is coming and mommy and daddy are off to play hockey. But wait! This is different? What do you mean Mommy and Daddy later? We then watched her disappear around the corner and both our hearts sank into our stomachs. I couldn't move my legs for a minute. It was the most terrible feeling.

We headed out of the waiting room and the nurses handed us a pager. It was the kind of pager that lights up like you get at a restaurant when your table is ready. We sulked off to get lunch and spent the entire time trying to guess how Molly was doing, what she was doing, was she scared, was she asleep yet? More than anything we wanted to imagine that she was asleep so that any fears she had were over and they had started. I remember asking Rob at 11:26 if he thought she was asleep yet and he had guessed yes. ( of course, that was just to make me feel better and to keep me from eating my way through the hospital cafeteria,,,they had great food by the way).

We made our way back up to the waiting area and plugged my PC into the wall. Rob, who is not a fan of anything facebook discovered a whole new world and we passed our time trying to concentrate on movie quizzes and updating friends about her surgical status. I dont know how much they appreciated the play by play status updates, but I found it very cathartic to be able to update my facebook everytime we got a call from the operating room.

The first call came about 12:15 where they told us that they had just started. Molly, they said, played quietly while they got everything ready...drew a little and didn't freak out at all. Regardless of whether or not this was the case, I appreciate them saying this anyway. The last thing you want to hear is that your three year old freaked out and clawed out the eyes of the surgeon 10 minutes before they operate. The next few hours our beeper would go off and we would run to the phone and get updates like they were Christmas presents. I actually let Rob take one phone call...but I sure didn't like it! The next update was "We just finished drilling the first hole and are starting on the second one" Okay then... if there was a thing as too much information..this update was it! No one wants to hear that their daughter has someone drilling into their head! This was definitely the longest part of the surgery. It seemed like once this part was done, the implant part went quickly. It took about five hours from once they had her back there. Around 5pm we got the call that we could go see her in recovery.

This is what we found:


Such a stark contrast to how she was a a few hours before with a look on her face like " What in the world did you guys do to me?"  We waited in recovery for about 45 minutes to an hour before we were taken to our room where we would remain until early the next day. This was her expression for the rest of the day and night. She was very quiet ( very unlike the Molly we know at home) and slept most of the time. I slept next to her in a pull out chair and Rob in a pull out sofa clearly intended for a much smaller person! 

The next day she was still drinking/sipping but had no interest in food other than the fruit chews ( a treat at home) that we gave her the night before that she was holding on to like some kind of security blanket.  Her personality resembled the Molly we met in China for the first time - Not the little girl she had become over the past eight months! It was heartbreaking to see this side of her personality..quiet...not a lot of eye contact...no smiles at all.  The next day, however, all of that changed. She began playing with some of the toys I brought, was very excited when I painted her nails and added decals. ( ugh..she is a girly girl..dont know what I will do with that?) and began moving around the room again. She even started smiling and talking again. Our girl was back.








We had an easy morning...for the most part...one throwing up episode...a bloody nose that we were told was quite normal after this surgery and her balance was off because she had just had her ears messed with....all things that would work themselves out.  We were home later that day.  Our friend Vickie who had unselfishly agreed to stay with the boys did a phenomenal job and Rob and I came home to a clean house and a home cooked meal!  We were in constant contact with our friends this entire time and truly believe we have the best friends in the worlds. We are so lucky.

Molly tried to sleep on the way home and got a small nap...but was really cranky once we got home. I dont know why but the first hour home was the hardest on her. I dont know if the pain got to her, or what she was expecting...but once she settled down, she started eating again and a few hours later was running around on a big wheel like a few days before.  I was able to get her in the bathtub but had to be very careful not to get the incisions wet.  It will be this way for the next few weeks.  

We head back to the hospital next week for a follow up with the surgeon and then the big day...the implant activation on July 30 and August 1.  I plan on bringing at least one video camera and hope to post this event on my blog.  If you have ever witnessed a cochlear implant activation video, you know they are amazing.  We were told to have high hopes and low expectations...and so we do. We dont expect for Molly to walk out of there saying "Wow..thanks so much for that..It is nice to be able to talk finally".  Molly has a chronological age and a hearing age. Her chronological age is three but her hearing age will start over on July 30 at zero. She will have to go through the same speech and hearing process as  an infant...in addition it will take some time for her brain to realize what is happening and relearn all the sounds she thought she knew prior to surgery.  We will be going to a lot of speech therapy  appointments and working a lot at home.   We are all very excited to watch Molly transform over the next year or so.  What an amazing journey this has been!

Monday, July 13, 2009

Almost there...

Just met with the surgeon who told us that she is wrapped up. Two implants and all they really have left to do is get her tested with the audiologist and get her to recovery. We hope to see in an hour or so.

Game On!

It is 12:30pm here and we just got a call from the nurse in the operating room that they just got started about 15 minutes ago. We were kind of surprised because she has been back there since 11:00am but it is definitely understandable. I cant imagine what they have to do in order to get started. Turns out the surgery will run about 5 hours because they are doing both implants... or at least attempt to do both. We will see. You never really know what complications will occur and this entire process has run less than smooth...so Rob and I are ready for anything. It was hard to watch them wheel her away at the "parents can go no further than this red line" area. I signed to her mommy and daddy later" that we normally give her when she is going to be left with a baby sitter and I wish I would have taken a picture of the confused look on her face. A face that says "this situation Im in does not compute with "mommy and daddy later". What in the world is going on?

So here we sit. waiting. waiting. waiting.

Friday, July 10, 2009

Hospital arrival time

Got our call today that we didnt have to be at the hospital until 9am which is great news because now we dont have to go down the night before and be away from the boys for two nights. We have a slew of volunteers helping with the boys and house so it will be a big party for them.  I did get together some activities for Molly to pass the time with once she is feeling better...depending on when that is...I cant imagine she will be feeling too good on Monday.  I plan on bringing my laptop so I can update the blog for those who want to remain plugged in.  

Thanks again for all the support! We have amazing friends!

Wednesday, July 8, 2009

Today was Molly's last speech appointment before her surgery just a few short days away. We are excited but careful not to be too at ease. With as many headaches as we have encountered getting to this point, we would be foolish to assume that the rest of this journey will be without an incident or two. I just hope that the worst of it is over. I hope that the discussions about money are over and that we can just concentrate on this little girl and her well being. I wish there was a way to explain all of this to Molly...but there just isnt so we have to trust that one day it will all make sense to her. We will be posting updates/ pictures/ video of the next few weeks and we know we are not the only ones interested in the big activation day. Activation day is going to be as nerve racking and exciting as Gotcha Day. Minus the bureaucratic headaches, this process has gone pretty quickly. After all, it was just August 20 of last year that we even knew that Molly exsisted on the planet and less than a year later she is standing here in my living room about to undergo a surgical procedure that will change her life forever. Very exciting stuff!

Monday, July 6, 2009

Finally sinking in...

well, it was a long day...but all is well in the end...so far.  We are sitting here holding our breath a bit hoping not to encounter anymore curve balls. All set for Monday, I plan on getting Molly to the pool as much as possible this week because it will be awhile before she can go back in again.

The original schedule is back on track and we are exactly where we were just a few days ago. Now all we can do is pray that the procedure goes as planned.  

Back to the real world tomorrow and getting some much needed work done. Hopefully that will be the last time we have to fight this battle.

Thanks again for all the well wishes on facebook.  The details of this ordeal were way to long to post on the blog so if anyone has any questions about what we encountered or what we did to rectify the situation, please feel free to contact me.  

Tricia, I appreciate your call today and will definitely look into that program.

We got approved!

The verdict is in. One surgery. Two implants.

Big thank you for everyones support through this wild goose chase. Tricare may not pay very much but they were actually wonderful to me through this entire process. Very helpful on the phone and even willing to call the hospital to relay policy.  

Looking forward to monday and the beginning of a new life for Molly.

Wednesday, July 1, 2009

The Beginning of the beginning...

Well. tomorrow we start. It is our preop appoinmtment in Birmingham with the surgeon who will do the implant surgery. I wish there was a way to explain to Molly what was going on...but in a way it will be easier on her. She is so trusting and adaptable with us that I dont even think she will blink. IT is going to be an amazing process and except for the 843 trips to Birmingham one that am looking forward too. Rob and I love the speech therapist in Birmingham and even though we could technically leave that practice and stay close to home for therapy we think it is worth it to work with her. We are going to actually attempt to work in Birmingham and here with both therapists...add in school three days a week and we will have a busy week.

Saturday, May 30, 2009

We have our activation date....

Got a letter in the mail. It has all the upcoming dates for Molly's activation and mapping sessions. In addition to these sessions, all in Birmingham, we will also be traveling there for speech therapy...so our once a week trips will now be as many as three a week to twice a week for awhile. While I dont look forward to all the driving, I am thrilled to know the day that Molly will truly hear for the first time. Her first activation session is July 29 and the second activation session is July 30. We plan on video taping the entire thing and will post it so that everyone can see this transformation...good, bad or otherwise!!

Had a great day today. Molly has learned to accept the ball park as an acceptable second home. Both boys played great today, then off the the pool and then a friends house to watch Detroit kill the Penguins in Game one of the Stanley cup.

Off to bed.

Tuesday, May 26, 2009

Summer is here... let the CI countdown begin...


Well, Summer has finally arrived and even though we have just as hectic a schedule as we did when school was in session, at least it is a different kind of hectic and different is good!

We are all set for Molly's CI surgery in July and have a pre-op appointment coming up in a few weeks. Until then we continue with our weekly speech appointments in Huntsville and will continue with them all the way through the surgery date and after. We also will continue with speech therapy in Birmingham weekly ( we love our therapist there as well) and will be making multiple trips for mapping. I am already getting ahead of myself and getting all excited about the CI activation date...which will occur around three weeks after surgery. People have asked me about how Molly will deal with this incredible new sensation of hearing and all I have to do is remind them of what she has already been through in her short little life. I think being able to hear doesn't even compare with losing a parent or parents, foster parents, and moving to the states with funny looking, funny smelling people. She has come such a long way in a short time. I think being able to hear wont even register on her scale as a traumatic event.

We are knee deep in baseball camp and finishing up the regular season...then we will gear up for a big family visit and we are all very excited about seeing Robs side of the family. Robs brother and sister in law have never met Molly and so they have been gracious enough to travel to Huntsville from Montana with their three kids for a visit. Immediately after the trip, the kids head into VBS and then we are looking at the prep for Molly's surgery and all of that. Soccer camp starts will begin in August and then things get really crazy with fall baseball and soccer for both boys...oh yeah...and school. Robby heads into second grade and Jack finally starts Kindergarten. Molly will have hearing prior to preschool beginning and both her teachers are looking forward to having her in class!

Thanks again for all the kind words and comments!

Thursday, May 14, 2009

We got our approval and surgery date

Well, talk about getting all wrapped around the axle for nothing! Tricare didnt even blink before they approved a bilateral implant for Molly. The hospital blew it again...not surprisingly. I asked them to just give me a call or email once they filed the insurance so I could stay on top of them....of course, they filed...and I didnt know about it. The sad part is that they had the approval on May 12 and didnt bother to call me either. The only reason I found out about it was because I happened to call them today just to check up on things. Of course, they didnt understand the authorization so I had to call TRICARE who was kind enough to fax the approval again. Tricare has been amazing so far. I know, Im shocked too....but they have been the bright point in this long process. So after the hospital decided to acknowledge that we have approval they went ahead and set up the surgery date as July 13. Molly will get both implants at the same time and we decided to go with Cochler brand implants over Advanced Bionics.

I would love to post more but I have been running around like nuts and have an exceptionally crazy day tomorrow.

One step closer.... she should be able to hear by the time school starts in the fall!

 

Friday, May 1, 2009

Another update

Okay...so it has been a week since we got back from our trip to see the Cochlear Implant surgeon. It was an extremely long day. Up early to shower and get the boys off to school so that we could be on the road by 7:45am and in Birmingham in time for our last speech appointment. We wrapped up with our speech therapist in time to just make it across town for the CT scan. They obviously have to make sure that Molly's Cochlea can house the implant and so we were really anxious to get that news back. The bad news is that they have to put her in this huge MRI machine and so they were all scheduled to sedate her. Because of the high probability of sedation, we were not allowed to feed her anything but jello and clear liquids until 9am and nothing at all after that after that. For a little girl who likes to eat constantly, I knew this was going to be painful for all of us. We got to the Radiology department and we had the best experience. The guy running the show, while I could tell he thought I was nuts, was willing to let Molly try to take the scan without sedation. She just had to lay perfectly still and I could tell that he thought we were just wasting time but was willing to give it a shot. Can you believe we put her in that machine and she did exactly what we asked her to do. She didnt move a muscle and it saved her all the time and pain of an IV and sedation. It was so great and Rob and I were really relieved. Following that appointment we had time to grab lunch ( something else we couldn't have done if they had sedated her) and drove back across town to meet with the surgeon. We walked in, filled out the new patient paperwork ( felt like I was taking the SAT) and waited to meet this man. What we were told is that we would have an hour to sit and talk to him about this procedure...what we got was completely different. He came in and sat for about 5 minutes, examined Molly's ears ( and we found out that she has another ear infection) and then he dropped this huge bombshell. He said Tricare would only approve one implant. I sat there dazed and confused. I knew I had called them ...even before Molly came to live with us and asked them the policy about bilateral implants and this was not their policy. I tried to respectfully relay this information to the man dressed in scrubs but he held to his guns. I finally said "Look, I know I have asked them this question before, and that is not their policy". He took a card out, wrote down his business managers phone number and told me to call her. In the meantime I called Tricare and confirmed their policy. No where in their policy do they state that they will only approve one implant and when I told this information to the business manager she immediately began back peddling. It was then that Rob and I figured out what was really going on. CI surgery is expensive...really expensive. Tricare insurance is not very good and if you are going to accept Tricare, you have to be willing to accept what they are willing to pay. The hospital, in an attempt to get off with as little loss of money as possible thought they would just do one implant and make it about the insurance company and not that they would potentially be losing a lot of money by doing a bilateral surgery. I can only assume that they thought Rob and I would just say"Oh, Tricare onoly approves one implant...well, okay". Anyone that knows us... okay, me anyway, knows that is not the case. We are getting two implants... if I have to wait tables at night or sell a kidney, we are getting her two implants. Yes Regis, that is my final answer. We were quickly rushed from the exam room and out of the office and told to wait about a week to ten days for the write up to be submitted to insurance. So here we are...waiting again...waiting to hear that the paperwork has been submitted so I can start harassing Tricare to get bilateral implants approved. He did agree to do both the implants at once and surgery will occur between June and August.

I will post more when I hear back about the insurance company. Thanks for all the great comments and support!

Monday, April 20, 2009

An update....late as it is...


Massive apologies for those of you still patiently awaiting updates all over the world. I think I admitted in one of my last posts that I couldn't keep up with this thing...so I thank the few of you left who have continued to check in.

Where are we in the implant process. Well, we have done our obligatory speech therapy...wrapped it up in about 5 weeks and have an appointment with the surgeon doing the implant this Thursday. They will do a CT scan of her ears to make sure that the cochlea is able to house the implant and then we will sit down for an hour with the surgeon and talk about what is next. He will write up his recommendations and submit it to the insurance company. Once that is done, we will schedule the surgery date. From what we have been told we can expect to get her a date in July/ August. But honestly, I have heard our insurance company is really good about approving this procedure faster than others...so it really could be June. We just have to wait and see. From that point, we get a surgery date. Three weeks after surgery, we activate the implants and that is when the hard work starts. Teaching Molly all the sounds that she knows and starting up with speech therapy again. She has proved to be just about the smartest little girl I have run across and the doctors and therapists who have had the opportunity to interact with her think she is going to do really well.

Thursday, March 19, 2009

Pre-Implant Therapy has begun

So we are back from our first week of Pre-Implant Therapy. I spent the week studying the ear and rattled off how the ear works when we hear..to include the names of the bones that conduct sound as it passes through to the cochlea.....blah, blah, blah. Anything to get on with this process! We covered the ear, the types of hearing aids and implants, the types of communication, different kinds of hearing loss...audiograms.., what the parents roles are for therapy...standard stuff. I knew about 95% of what she told me and picked up some new information as well which I found really interesting. If you have never studied what the ear/ brain does to understand sounds and speech you should check it out. IT is really amazing and something I know that I take for granted.

It looks like the hold up on our end will be Insurance approval which can take up to 30 days... I will start calling them as soon as they submit the paperwork. My plan is to become Tim Robbins from Shawshank Redemption and call them constantly until they move us along. If everything goes as planned we could have at least one ear done by July and hopefully both.

We will be heading back next week for more parent education. I do love her therapist. Molly is in good hands. As soon as I graduate from Cochlear Implant Therapy class we will be heading back into therapy with her original local therapist who is also really good...and we will stay with her until they force us back to Birmingham.

Wednesday, March 11, 2009

Day Two - Speech Eval in Birminham.

Well, what a crazy day. I had to get all the kids up, fed, dressed and out the door by 6:45 so that I could jump on the road to Birmingham by 9am. Those who have ever seen Jack, my five year old, in the morning know that is is not an easy task. However, we managed to get it done and I arrived for our speech evaluation 5 minutes before our appointment. I wont even mention the number of laws I broke in order to get there on time.

The speech eval was mostly questions about her development in all areas...speech included. Both Speech Therapists thought that Molly was exceptionally bright and cognitively right on track. Any delays she had in other areas were solely due to her not being able to hear. They hold out great hope for what the implant will do for her and while they cant assure me of the level of success she will have, they feel that shooting for mainstream kindergarten is not something that is too far fetched.

So we left knowing that the next step was a few months ( three to four ) of pre implant therapy. That means we have to agree to bring Molly to Birmingham once a week until the parents know everything that the therapists and doctors want them to know. This process usually takes three or four months. However, due to the number of hurdles and struggles we faced in trying to get her in and tested I had already studied the different types of hearing loss, am well versed in reading an audiogram... ( at least good enough for someone who isnt a speech therapist or audiologist), know the type of hearing loss Molly has and how to describe how a person hears complete with drawing a diagram of the outer, middle and inner ear. I guess I figure if I had to know enough to do eye surgery in order to fly nights in flight school I may as well become an expert on the anatomy and function of the ear. All of this information is what they are looking for the parents to know prior to surgery and I think I proved that today. I've also reasearched the two different types of implants that Childrens South offers and what makes an implant different than a hearing aide. So after throwing all of that out there, the therapist I spoke to said that she thought I would probably be able to go through their checklist in 6 weeks. I am determined to do it faster than that!

Once I got home, the therapist called to let me know that all the slots for therapists were full and that they thought that based on the information I already had that I would be able to wrap up pre implant therapy in about three weeks. So we went from three to four months to three weeks and I couldn't be happier. Finally the system is working for us...not against us. Im thrilled. But I will be studying like crazy for the next three weeks in order to learn and commit to memory everything I need to know in order to speed this process along. Once the therapy is complete, we will get a CT scan of Molly's ears, and then meet with the Doctor doing the surgery. We are attempting to get the insurance to approve a bilateral implantation... basically meaning an implant on both sides. Because our doctor doesn't like doing both at the same time, we will have to actually have TWO surgeries to get this done.

Im hoping that we will spend the next month in pre- implant therapy, than another two or three weeks getting CT scans and meeting with the doctor, than another two or three weeks for the insurance approval....so three months before her first surgery. In the meantime we will travel to Birmingham for therapy and continue our therapy here with our local AV therapist as well. If things go as planned, Molly should have both implants in, turned on, and mapped before school starts in August!

Our first therapy session is next Thursday. Here we go! Another step closer to the Implant process.

Tuesday, March 10, 2009

Not just power aids...super power aids..

Okay...so back from our first trip to Birmingham this week. Unfortunately, we are headed back tomorrow for the speech eval. I was hoping that we could take care of the speech eval over the phone. Molly knows several words....but can only really say three or four...why drive all the way to Birmingham for that? But alas, we are headed back.

But first, our appointment today. They put her back in the booth and her results were very consistent with the results from her last unaided exam...in fact they were 5 to 10 db worse. Honestly, if aided results are not where she needs to be to get her the best possible hearing, Im all for her having some bad results if that means it will help her qualify for the implant. What the audiologist determined was that her hearing was severe to profound and that she needed new hearing aids. The ones she has had all this time, even cranked up, were not going to help her so they told me that she needed "super power hearing aids". The aids she had were just "power aids". Tim the tool man would be proud. I actually put one up to my ear and WOOOOZZZIE.... it is LOUD! Much louder than her last set. Goodness! Have I noticed a difference yet...not yet...but she is so smart and so able to communicate with out her hearing, that Im not really sure she realizes that she can hear a bit better.

The next test was the aided exam and what this showed us was that it did improve her results but not enough to where we would be comfortable with her living day to day. The best we could hope for her aided was one or two word sentences and a dependency on sign and reading lips. We aim to shoot a little higher for our girl. If you know anything about the speech banana ( and some of you reading this will). She registered at the bottom of the speech banana at all frequencies except the higher frequencies which didn't register AT ALL! So words like hat, pat, sat...would all sound the same to her unless she was reading lips.

That pretty much settles it for us then...on to the Implant process. We will start our speech appointments tomorrow and they will continue weekly up to a year. After we understand all they want us to know about the implant process, we will be scheduled for a CT scan where they will take a look at her ears to make sure she can even hold an implant. Every thing we have seen from her so far looks good so Im really not concerned with this part of the process. Then we meet with the doctor and schedule the surgery. We are looking at bilateral implants which means the doctor will implant one and then a few weeks later, implant the other. After a few weeks pass and the swelling goes down, they will turn the implants on and then the mapping process takes place. This takes weeks and weeks and will continue until they feel they have all the levels set appropriately for each frequency. All this time we will be having weekly speech sessions that I hope to have moved back to Huntsville by this time... but we really have to take this one step at a time. This is the beginning of a very, very, very long road. Step one was today...step two ...tomrrow...ugh.

Thursday, February 19, 2009

Hearing Eval...an update

Wow...well, it is official. I suck at the blogging thing. It has been over a month and if you are a follower of this blog, well Im sure you have moved on by now. Sorry...but this is one overwhelmed mother of three and because the blog cant sit around and whine for chocolate milk or ding dongs for breakfast, the blog gets ignored. Its a people's choice award really...and the blog loses...every time.

So we finally...three months after getting Molly home have an idea...a good idea of where her hearing is...or her non hearing more like it. After three months, phone calls, waiting, etc we know how bad her hearing is. Molly is deaf. Not just a little hard of hearing ( which frankly I had thought that maybe she was) but full on, full tilt, severely deaf. We had an INCREDIBLE experience with two fantastic audiologists who felt very good about Molly's reactions to the hearing test and think that Molly is about an 95db in the right ear and 85 in the left. What that means is that a sound has to be at least 85-95 db for Molly to hear it. While that may sound loud, it really isnt THAT loud per se. A whisper in a library is about 30db and a normal conversation is about 60db. That is of course, unaided. We would have checked for aided hearing, except the genius in Birmingham who did the first eval set her aids way to low for her so it wouldnt do us any good until we get them reset. I was very nervous as she was tested... I became a stage mom almost willing Molly to hear that beeping sound that was so easy for me to hear. Come on! Come on! Point to the mechanical duck! It was the ACT all over again!

So what does that mean for her future. It means that we will begin the looooong, arduous process for Cochlear Implants. There are many evaluations left to do and it also means that I will be burning up the roads to Birmingham once a week for tests and evaluations...but we do believe that this will give Molly the best possible future and so away we go.


It is kind of bitter sweet actually...the deafness. We are thrilled to finally have the answers to some of our questions...but wouldnt have minded if the audiologist had said.. Oh wait...I have seen this deafness before, here...give her this pill and she will have completely normal hearing in just 10-12 minutes." And am I thrilled about returning to Birmingham...NO...but we will do what we need to do.

As far as the type of hearing loss she was diagnosed with - it is sensori-neural hearing loss. Meaning that the tiny little hairs in the Cochlear of the ear either do not exist, are somewhat missing, or just flat out dont work. Bummer that they cant fix that...but the implant will help. Where is the hair club for men when we need them? We dont know what kind of lifestyle Molly will enjoy with the implant nor do we really grasp the amount of work it will take to catch her up on her language deficit...but she is soooo smart...all things look good for her.

Well, it is time to shower and head off to Audio/verbal therapy. I am in a hockey induced fog this morning and have got to clean my house before Child Protective Services takes all three kids away...not that I wouldnt enjoy the break!

Thursday, January 15, 2009

Speech and other things..

So not a lot to report of any real significance. The China blog was so full of these huge firsts and monumental events that I tend not to blog when we have just a normal day...but a normal day is something monumental in itself, isnt it? Just being able to say that a day was just an average day with a little girl who has known three mothers in just 2.5 years is something..so in honor of Jerry Seinfeld...lets hear it for days about NOTHING!

We got up today after a great scrimmage on the ice last night....it is always interesting when Rob and I are on different sides of the ice and makes for some interesting stories when we end up fighting over a puck in the corner. Dont all married couples chase after each other on the ice and hit each other with sticks?

Both boys are off to school and we went to Molly's speech therapy session. She did a great job and is reacting to more and more sound..sounds I didnt think she could hear, well, she can and we have seen just over the past three weeks that she is figuring out "how" to listen. I dont know where her hearing level is unaided...but aided she is doing great and her speech therapist thinks the best thing for her is to get her in a mainstream preschool. Of course, we still need to hear from an audiologist and ENT...but I am continually amazed at what Molly can hear sometimes. I sure wish I knew what her hearing level was! Maybe one day!

We did find the perfect preschool for her at a local church...and will go by and see about securing her a spot for a few days a week in the fall.

Well, thats about it. Molly is wrapping up her nap and the boys have escaped to go play at the neighbors. I am going to wrap up cleaning the house and perhaps sneak out tonight for some pick up hockey!

Here's to a day about NOTHING! Didnt think we would have reached "normal" as fast as we seem to have!

Tuesday, January 13, 2009

Not a lot to report...

So we have settled on using Children's Rehabilitation Services here in Huntsville and are now engaged in the arduous process of enrolling in the system. Dont know how long that will take...but we do know the audiologist we will be working with comes highly recommended so I feel good about following whatever road she wants us to take. We will also have access to a highly sought after ENT and so maybe once we get in the system, we will have a crack at an ABR. Every speech therapist and audiologist I have spoken too besides the first one we saw in Birmingham has recommended that we push for the ABR based on Molly's age and background. Once we figure out where her hearing is we will be able to make a decision on whether or not we want to pursue the Cochlear Implant or just get her the best hearing aids we can get our hands on!

Other than that, we are just settling into our new life. We had a disappointment with the Chargers loss this past weekend. Of course, I have been a Steelers fan ( albeit not a very vocal one for the past 10 years or so) since I was a kid so I wasn't too upset.

We spent this past Saturday at the aquarium in Chattanooga and then Sunday Rob and I had a hockey game. It was nice getting on the ice before 9pm. I am always so "amped" up after a game that it takes me hours to relax enough to go to sleep. With a late game, that can sometimes put me in bed way after 1am. The boys are full swing back in school and Molly has become obsessed with Jacks big music show. It is the only show she likes. I don't know why? There are plenty of kids shows that have as much music...but she likes that one. So be it.

Other than that, we are patiently waiting for the end of winter..not that we have a real winter compared to most but it will be nice once we can play outside without Molly getting too cold. She has put on about 5 pounds since we got her home just under 2 months ago and so we are pleased. Yesterday would have been her birthday if we hadn't changed her birthday to a more suitable date. So we have a few more months to figure out how Molly should celebrate her first birthday.

She has been to two speech sessions and they have gone well. I dont know how long her patients will last with the games that the speech therapist wants to play. She is already starting to show signs of being annoyed with them..and frankly, I dont blame her. She is saying a few words now. Mom, Dad ( which sounds more like agh -agh instead of da-da), more, and baby. It truly is like having a 5 month old in a 2.5 year old body.

We hope to get into the see the next audiologist in February. So we wait...and we wait.

Wednesday, January 7, 2009

Second part of the Check up

Okay, so back to the Children's International Adoption Clinic today where we did a preliminary speech eval. ( didn't really find out anything that we didnt know) Molly is indeed deaf and does not speak English. Alrighty then..nothing new there. All her lab work came back completely normal and within limits and the vaccines that she had received in China were all good. She didn't have that many of them so we will be catching up on vaccines starting in the next week or so.

What we did determine is that Molly is closer to 2 and a half years of age and so we are going to give her a birth date that reflects that but also has some meaning. You see, the original birth date that was given to her was just a random date picked by the doctor on duty when they found her. The day was just plucked from the air. We decided that we would choose a day that had meaning to us and hopefully one day to her...the day we found out about her. This is the day that I called the agency and wound up getting Molly's pictures sent to me and Rob and I decided that she was the one. August 20. It also gives us options as far as starting school and that is a key benefit as well.

We did not really address the hearing issue but I have been making some phone calls and did get hooked up with a local agency that will give me access to a phenomenal audiologist as well as a really fantastic ENT. This is probably where we should have started but I took the advice of a very well meaning doctor and went straight to Birmingham...oh well, live and learn. It will probably be February before we can get in to see the audiologist...so until then we will continue to go to Audio/ Verbal therapy and continue to exercise Molly's brain, ears, and speech.

Thats really all the updates we have for now. Molly is doing better every day and yesterday was actually the first day that she didnt wake up and immediately ask for food. She still eats an incredible amount of food and actually put on almost an entire pound since her last trip to Birmingham just about a month ago...about 4 or 5 pounds total since we got her on November 9. The weight looks good on her! When we first brought her home she would eat and then within minutes go stand by the pantry and just beg for food. She doesn't do that anymore! She is actually trying to talk to us and repeat words...but they sound nothing like what she is trying to say...but we give her an A for effort!

Monday, January 5, 2009

Back to the grind...

Well today was kind of a sad day for at least part of the Barrie family. The two boys headed back to school...reluctantly. It was quite nice getting back to one on one time with Molly though and we had a great day. We made a few contacts with Children's Rehab and have figured out that is probably where we should have started. Now it is just a matter of getting scheduled in a timely manner. It is so nice living in a community where everyone seems to know each other. Makes getting information a lot easier. We head down to Birmingham for the second appointment with the International Adoption Clinic where we will discuss what we kind of already know....all of Molly's lab work came back clean and so we are thrilled with that news. We will also finalize her age and get the paperwork started for that.

We continue to make progress with her every day. She is a happy kid and her tantrums when she doesn't get her way are short and quite manageable. She is sleeping great and is doing really well with Rob. Im still not quite sure she "gets" who we are...I mean, she says Mom and Dad ( da da comes out like ah ah) but I don't think she gets what that really means.

We head in for our second speech session on Thursday morning. I'm beat and heading to sleep! Thanks for all your kind notes and comments. They really are appreciated! I promise to post more pictures and video soon!

oh...and today is the very first day that Molly didnt wake up and instantly ask for food. In fact I had to kind of convince her to eat! Either my cooking is that bad ( and if you know me that is a definite possibility) or our girl has figured out that their is always going to be another meal!