ABR Test Results

Our day at OHSU went very well. Lilly was such a trooper, she did an amazing job. She was so patient with everyone and did everything that was asked of her. I am so proud of her!
The test showed that her Auditory nerve is working correctly. This is really good news, but it also comes with a grain of salt. If the test had revealed that the dis-connect with her hearing was in the Auditory nerve, we would be looking at a fairly easy fix. She would have been a candidate for hearing aides or a Cochlear implant. If we had gotten the diagnosis for Auditory Neuropathy or Auditory Dys-Synchrony, her testing would be mostly over and we could have decided what step was next to best treat her hearing issues. Neither of these diagnosis are possible causes because her Auditory nerve is "firing" correctly. Like I said, it is good news.
The bad part of this news is the specialists would like her to be tested for CAPD (Central Auditory Processing Disorder). CAPD is a much more complicated diagnosis and is much more complicated to treat. There isn't necessarily a fix for it. It's more of an "accommodated" type hearing issue and people that are diagnosed with it are coached/taught different strategies on how to learn/deal with it. Hearing Aides and/or Cochlear Implants have not shown to help in any way with CAPD patients. There are things that will be done for her specifically if she is diagnosed with it. All CAPD diagnosis are very individualized. The catch to all of this is that they suggested we need to wait about a year before beginning all of the testing. It is long, very in depth and can be somewhat grueling for young children. They recommend kids be 7 yrs and up for the testing. CAPD is technically an auditory processing disorder and can be present even if the auditory nerve seems to be "firing" correctly. The ABR test she had today tests sounds entering her ear, traveling through the ear and up into the auditory nerve that connects at the bottom part of the brain-stem. This test does NOT measure/track sounds, brain waves, etc after it leaves the bottom portion of the brain-stem. To have testing done that does track all that above the bottom portion of the brain-stem, you have to do the ABR test first and pass it...which is exactly what Lilly did today. Most hearing issues that are caused by a dis-connect in the upper portion of the brain/brain-stem come with a CAPD diagnosis and are complicated to test for, etc. This is why they prefer to have a child be at least 7 years old.The good news is that there is an EXCELLENT CAPD testing treatment center right here in Portland, so we have a great place to go to when the timing is right. Part of me wanted the neuropothy diagnosis simple because it's somewhat of an easier fix, but I am glad that her auditory nerve appears to be working properly at this point.

The other good news is that Lilly is really doing very well all around. She is doing great at school, she is doing great socially and is emotionally very healthy. Waiting about a year to do this testing is not going to hinder her in any way at all. We have been doing exactly everything that she needs all along.
The other GREAT news is that the staff at her school have already put into place all of the things to help her along that the specialist recommended be done for her starting from now until we start the CAPD testing. She couldn't believe that I had gotten the school to put in place any of the suggestions without having an exact diagnosis for Lilly or an IEP. She said almost ALL schools require an exact diagnosis and/or an IEP before they even offer to help a student in this way. I was already very aware of all of this, but it was so reassuring to hear it from a specialist that deals with it all the time. She stated that it is completely backwards how they run and govern helping kids with any type of learning disabaility, so she was very pleased that we were in a school that didn't operate that way. I am VERY PLEASED too, because I have had a few "lingering" thoughts about our decision to place both kids in the Charter School...they diminished as of TODAY! I now know that it was a good decision to make for our family.
One more note- when we got there, they gave us the option of attempting the test without anesthesia and if it was not successful, we would proceed with the sedation part of the test. I was somewhat surprised because they hadn't discussed this option with me before the appointment. We were all for it as long as they could assure that the test results were going to be just as accurate as if we had done the sedation. They did the test with her awake and like I said earlier she was an absolute TROOPER! They said most kids needed the sedation, but that it's always worth a shot if you think your child can go without it. I felt so guilty about starving her for 6 full hours when she ended up not needing the anesthesia after all!! Poor thing. She ate like crazy all afternoon and evening- LOL.
Well, that's it for now. Thanks for all your thoughts and prayers. We will continue our interesting journey through this hearing stuff and just keep looking forward!

Looking Up!

OHSU had a cancellation and Lilly gets to go in tomorrow (23rd) for her ABR testing. I will be so relieved to get this test behind us. I am trying to come up with a good explanation for her about how this test will be performed, why we are doing it, etc...it will just be nice to get it over with. I think the hardest part for her will be the NO Eating/Drinking for 6 hours. We check-in at 11:30 and sedation time is scheduled for 12:30. I have been getting a lot of texts, emails, calls, etc about her hearing issues. It is kind of difficult to explain it all and lengthy, so if you want to know more about it- just scroll down on the blog and click "older posts". It is titled "Lilly News". You can read all about what's happening there. Thank you so much for all the thoughts and caring words regarding her!
We are all better now and recovered from the nasty flu-like bug we had. I know a lot of others that have it now and we feel their pain. It's a rough one.
Griff's stitches came out on Saturday. His scar/eyebrow look great! It was the perfect spot of all the places on his lil' face to hit and require stitches.
My Girl Scout Troop held it's first official booth sale at Freddy's this past Friday evening. The girls were a hit and sold a lot of cookies. I have some cute pictures to post later.
Will keep you all updated on what we find out tomorrow after her testing.
Ta-Ta...

A funny quote-

Momma B sent me a quote this morning that made me chuckle...
"When life gives you crap, hold up the pooper scooper and yell,
BRING IT ON!"
Ha-Ha...seems rather appropriate right now.
Thanks for the laugh Momma B!
I am waiting for the scheduling department to call me back with another date for Lilly's test. Will let you all know as soon as we hear something.

Doomed!

It has been a tough day. Griff is not better...in fact his diarrhea is worse and he's throwing up again. I took him back to the doctor, paid my stupid $35.00 co-pay and of course there is nothing they can do for him. It's just maddening! As we were walking into the doc's office, Lilly started throwing up! She is SICK now too. I will have to call in the morning to re-schedule her ABR test at OHSU. They can't put her under anesthesia if she's sick. We may have to wait until April now to get the test done because that's how far out they are scheduled at the moment.
My carpool fell apart today too, so now I have to figure out how to get the kids to and from school. It's a charter school and buses are very limited. The kids can ride the bus to school, but there's no room on bus after school...go figure. They are on a waiting list.
Also, most tragic of all- Mr. Phillips passed away early this morning from a long battle with cancer. He was Mac's principal at Sandy Grade School. We have lots of friends that still attend there and it is just heart-breaking for all of them. There are a lot of kids at the Charter School that had Mr. P at Sandy Grade. They were all taken out of classes this morning and told that he had passed away. Some of them were crying and were upset. It was just a tough day all around...not just for me and my family, but for a lot of others too.
Time heals all wounds I hear...so hopefully things will be sunny again soon.
I will let you all know when Lilly's test gets re-scheduled. Thanks for thinking of her!

Roses, Red Roses...

With all of the craziness going on around here, my sweet hubby still made it to the store to buy me some beautiful roses! The kids were both bummed about having to stay home from school and missing their parties, but they immediately perked up when they saw how many cards they received in the mail!!!!
Thank you all so much for remembering them and sending them loves!
Hope you all had a wonderful LOVE day.
Everyone is back to school and work today. We all seem to be over the flu bug and Lilly somehow came through it without blinking any eye...thank goodness. Her ABR test is tomorrow. It will be a long day indeed and we are all a bit apprehensive about it, but I know it will be nice to have some answers about her hearing loss/issues. Keep her in your thoughts. I am still trying to figure out how to explain to her what is going to take place. She can't eat or drink anything for 6 hours before the test...also trying to explain that she will be "going to sleep" for awhile seems a bit challenging. Will keep you all posted (:

An "OUCH" of a weekend!

Our weekend turned "very sour" at about 7:00 p.m. on Saturday evening. At least it all fell apart after the big Prince and Princess Ball...but once it did- it was horrible.
I had been sick with a stomach bug earlier in the week on Wednesday and then Griff got it Thursday. He had stopped throwing up by Friday, but had diarrhea pretty bad. I just tried to keep him hydrated and rested as best as I could. Mac, Lilly and Pat were all feeling fine through all of this time, so I figured the bug had come and gone. I couldn't have been more wrong! On Saturday evening I got sick again...it came back with a vengeance. I was in so much pain. I couldn't believe it. I have NEVER been that sick...every muscle hurt, my head was just screaming and I was throwing up like crazy. I pretty much locked myself in the the bedroom trying to survive it. Pat decided to sleep downstairs, away from me...in hopes that he would not get sick. At 1:00 a.m. he heard Mac scrambling to make it to the bathroom. He was throwing up and SO SICK. It was awful. I couldn't move and just felt totally helpless. Pat had to try to comfort him. By 5:00 a.m. Pat was throwing up and in pain too. I had no idea what I was going to do when Griff and Lilly woke up. I sent Cathy B. (Momma B) a text that said "we need help!". She replied right away and I can't really remember too much right after that. When I woke back up, she was downstairs with all 3 kids. She had brought groceries, medicine, 7Up, Gatorade and even popsicles! Griff was sick again, but not as bad as before. Lilly was fine and showing no signs of feeling ill. I moved Mac upstairs with Pat and I. He was in so much pain with stomach cramping, headache, etc. It was awful. We all slept more and just tried to get through it. Momma B had her hands full with Griff and Lilly. At some point, Griff was in his booster seat eating some crackers and he popped the tray off his seat. He fell out of the seat and hit the floor. It was about a 3 foot fall from the chair. He cut open his eyebrow and screamed bloody murder. Pat and I jumped up from the bed and came downstairs. Poor Cathy and Poor Griff...their eyes were huge and you could tell their hearts were racing.
We calmed Griff down and decided to take him to the ER. I left Pat here to care for Mac and I gathered any and all the strength I had to get us to the ER. Momma B went with us. I was so glad to have her there because I still didn't feel very good. When we got there, the place was pretty full and everyone there was sick!! It sounded like the same stuff that we had. All I can say is that is was horrible! I think it's a flu bug-
Griff ended up with 3 stitches. He handled it very well and they really couldn't be in a better spot! His scar will be very hard to see because it's right in the middle of his eyebrow. I will take him back in 6 days to have them removed. He is doing much better now. No more throwing up and diarrhea seems to be getting a little bit better. He is still very clingy and pretty fussy, but I am glad that he isn't as sick anymore.

Momma B stayed until late evening with all of us. We were able to get more sleep and I felt MUCH better by the time she left. After getting everyone to bed, I started disinfecting everything in this house. I slept away from Pat because he was still sick. Both Mac and Pat are better today. Lilly has yet to get this...I kept her home from school just in case. I would hate to give this to anyone. She was really upset about having to miss her Valentine's party, but I promised her that they would save all her cards and goodies. We REALLY need her to stay healthy because her ABR test is on Wednesday. They won't be able to do the test if she is sick because she has to be under anesthesia. Please, oh please don't get sick Lilly Belle!
This morning Cathy text me to say that she has our bug. I feel so guilty!! We asked her for our help, she came running and we got her sick! Just horrible. Luckily, Jim knew she would catch our bug and he was prepared. He went to the store and got her all the essentials needed to survive this nasty bug. She was able to get a sub for her class. I told Lilly that she had to miss her Valentine's Day Party too.
So sorry we got you ill Momma B. We will somehow make it up to you!
Happy Valentine's day to all of you. We are re-cooping and scrubbing down our house...what a way to celebrate "Love Day"...

Princess Lilly and her "Prince"

The Girl Scouts Prince and Princess Ball was on Saturday. Lilly has been so excited for this big day...it's all she has talked about for the last few weeks! Her "Prince" did an excellent job of escorting the Princess, even with his broken ankle (:
She had the dress, the shoes, fancy hair, sparkles, painted fingers and toes, fancy shoes and even got to wear Mommy's diamond necklace! She also picked out the Prince's attire. She loved his purple tie. He did look very handsome.

She wore these shoes and danced in them like a pro! I have no idea how she became such a pro in heels...

I love these pictures! They were practicing their ball dance before heading out the door.

So Sweet!

Lilly and Kaylee were rockin' the party...

...they ended the evening with a bang!
Dancing on the fireplace...

Griff News

Lil' Griff is 14 months old now. He is a CUTIE.

He keeps us all on our toes at all times. He is a busy body. He wants to know what everyone is doing at all times. He runs from room to room and spies on us. If he thinks what we are doing is interesting, he demands to be in the middle of it! He is cutting more teeth right now and is a slobbering mess. He also has had a bit of a cold for about 3 weeks! Between the snotty nose and drooling mouth- he's a mess. Yesterday he had a stomach bug...threw up all afternoon and all over the house and all over me. It was quite the day. Thank goodness it was very short lived. He is fine today. I was hoping it would pass fast. I was sick with the same type of thing on Wed. It was horrible, but lasted only that day. Pat had to take him to the Doc on Wed (cuz I was sick) and she said his ears were clear and his chest sounded fine. I have been concerned about him because this cold has just latched onto him. I guess it will pass in time.

He plays hard and babbles all the time. He can say Momma, Dadda, Mac, Uh-Oh and Ba-Ba very clearly. He also waves bye-bye. I don't take him shopping with me much because he climbs out of the shopping cart constantly and SCREAMS when I try to put him back in it. Mac and Lilly never did this...I really don't like it, so I just don't take him shopping with me unless I have too!

In this picture, he wasn't feeling a 100% and was snuggling with Daddy. So Cute...hope he feels all better very soon!

Lilly News

Have lots of news on Miss Lilly.

She is having a great year in Kindergarten. We love watching her learn and grow. She is making great progress in reading, writing and math. She is also doing well with Mandarin Chinese! She is Student of the Month in her class!

Here is a link to the school web-site. You can see her picture and read what her teacher wrote about her! http://www.oregontrailschools.com/299820111917106820/site/default.asp

We have some news on her hearing issues. She has had a lot of appt's, evals and tests lately and has a few more to go, bless her heart. She has handled everything very well and is really doing great. We have known since she was 2 that she wasn't hearing at 100%. She qualified for early intervention services and started speech therapy shortly after we found all this out. She did 2 years of speech and was talking clearly by the time she started her 2nd year of pre-school. I was relieved that she had made such great progress with her speech. I didn't want her to go into kindergarten with an IEP for speech, hearing, etc unless it was absolutely necessary. All of the doctor's and specialists couldn't tell us at that time a whole lot about what caused her hearing loss, how much she had, what type, etc. It was really difficult to find answers. We knew that we would have to wait some things out and that we would eventually get some answers. We are starting to cross that bridge now. After some recent testing, we have been told that her hearing loss is likely Sensorineural hearing loss. This means that there may be some problems with the nerves connecting the inner ear to the brain.
In the inner ear, tiny hairs on the cochlea act as a neural pathway, transmitting through the inner ear. Usually, problems with these hairs on the cochlea are responsible for sensorineural hearing loss. It is usually permanent and present at birth.
She is scheduled for an Auditory Brainstem Response Evaluation Test (ABR Test) on the 16th of this month. (less than a week away) It is a lengthy test and she has to be under anesthesia. We will be up at OHSU for it. This test can identify cases of sensorineural hearing loss. It is a sleep EEG hearing test which shows the softest sounds your child's ears can detect at various pitches. The ABR compares changes in brain activity to the timing of repetitive sounds to determine whether the particular intensity of sound can be heard. Sounds will be presented through an earphone to each ear separately while a computer analyzes the changes in the brain wave pattern in response to sounds. We will be in the room with her during the test, and the results will be explained immediately afterward.We are a bit anxious about it, but will also be relieved to get some more definite answers about what is going on with her hearing and how to best communicate with her, what steps may be necessary to improve her hearing, etc.
She will likely be diagnosed with CAPD- Central Auditory Processing Disorder. We have been working with this diagnosis for awhile and communicating with her as if she already has it because she shows almost all signs of it. This ABR tests will more than likely just confirm the type of hearing loss and decide whether or not she needs hearing aids or maybe a cochlear implant. I will get in to the CAPD symptoms and treatments in more depth after we get through this next test. There is a lot of info on it. Here is just a little piece of it- this sort of describes how Lilly responds when she is being asked to do something or follow directions. Her biggest inability at this point in time is "the inability to tune out background noise", it's very hard for her to focus or hear what she needs to hear when there is back ground noise or when someone is speaking rapidly. She is definitely struggling with the Auditory Part of Hearing.

The easiest, quickest way to communicate is simply to say something and then deal with the other person's reply, right? Except that if your listener has a CAPD (Central Auditory Processing Disorder) your remark might come through with certain words drowned out by other noises, or with some words sounding like different words or as meaningless strings of verbiage. You might begin to suspect this when the other person's expression doesn't register understanding, or if she "answers the wrong question," or when she asks you for additional information which most people would have been able to infer from what you just said.

Most of us aren't that sophisticated about CAPDs, however, and are much more likely to wonder if the listener is just not very intelligent or doesn't really care about us and what we are saying. People with CAPD (which are usually part of a learning disability) have been embarrassed by situations and reactions like these all their lives.

A CAPD is a physical hearing impairment, but one which does not always show up as a hearing loss on routine screenings or an audiogram. Instead, it affects the hearing system beyond the ear, whose job it is to separate a meaningful message from non-essential background sound and deliver that information with good clarity to the intellectual centers of the brain (the central nervous system). When we receive distorted or incomplete auditory messages we lose one of our most vital links with the world and other people.

These "short circuits in the wiring" sometimes run in families or result from a difficult birth, just like any learning disability. In some cases the disorder is acquired from a head injury or severe illness. Often the exact cause is not known. Children and adults whose auditory problems have not been recognized and dealt with are forced to invent their own solutions. The resulting behaviors can mask the real problem and complicate not only school and work, but even close relationships, where communication is so important. Advice like "Pay attention," "Listen," or "Don't forget --," hasn't helped either.

It takes specialized testing to identify a CAPD. Some of the tests used by educational therapists, neuropsychologists, and educational psychologists give at least an indication that a CAPD might be present. These include tests of auditory memory (for sentences, nonsense syllables, or numbers backward), sequencing, tonal pattern recognition or sound blending, and store of general information (which is most often acquired through listening). The most accurate way to sort out CAPDs from other problems that mimic them, however, is through clinical audiologic tests of central nervous system function. These are better at locating the site of the problem and reducing the effects of language sophistication on the test results. Do your best to choose a professional who is familiar with CAPD. Also, there may be conditions accompanying the CAPD which are medically treatable like allergies, Attention Deficit Disorder, Tourette syndrome, or nutritional deficiencies. CAPD is a complex problem affecting about 5% of school-aged children. These kids can't process the information they hear in the same way as others because their ears and brain don't fully coordinate. Something adversely affects the way the brain recognizes and interprets sounds, most notably the sounds composing speech.

Kids with CAPD often do not recognize subtle differences between sounds in words, even when the sounds are loud and clear enough to be heard. These kinds of problems usually occur in background noise, which is a natural listening environment. So kids with APD have the basic difficulty of understanding any speech signal presented under less than optimal conditions.

This is a lot of info and only certain parts of it pertain to Lilly. She is REALLY doing well considering all that is against her. I had a meeting last week with her teacher, the learning specialists and the speech therapists at school and they couldn't say enough about how impressed they are with her. She is in the lower range for reading, but not the lowest. There are kids below her that have no learning issues/disabilities like she does. For speech, she passed her evals. Of course she has some speech sounds to work on, but she can produce the sounds when she tries really hard, which is amazing considering all things. I think that things will just get better and easier for her from here on out. They are going to "tweak" a few things in her classroom to help her a bit. I think she is in the right place for now and that she will surprise us all and exceed all the goals that have been set for her...like reading by 1st grade. I know she can do it! She is fearless and strong willed...thank goodness! Here is a picture from last weekend at The Whitlock's. They put in a Zip-Line and Lilly didn't even a blink eye. She climbed up there and took off. FEARLESS is definitely a good thing!

I will keep you all updated on results, etc as we navigate our way through this process. Just keep her in your thoughts and send me some strength to keep up with it all!

Mac News

Mac is doing great! He is having a good school year and keeping up on school work, grades, piano, sports, friends, etc. I can't believe that he is 10! It's just crazy how fast time is going. He had a great football season and a fantastic basketball season. His next sport will be track starting in the spring. I think he is looking forward to it. He has had a growth spurt over the last few months. He is getting taller every day it seems! I love talking with him. He has lots of cool ideas constantly running through his head. He is a great big brother to Lilly and Griff.
He is still really passionate about animals and wants to do some volunteering at The Oregon Humane Society this summer. The picture below is from January. We took in all the donations of gifts and money from his birthday party. He really enjoys going there and helping out the animals.
All in all, things have been going good for him. He is looking forward to summer time and some warm weather!!

Time to catch up

I feel that I am so far behind on this blog! I am not sure where to pick-up and start...I will have to just leave some stuff out and just catch you all up on the important news!
So, let's start with Pat-
His ankle is healing up pretty quickly. He broke it on January 22nd. The story is pretty funny. He was rough-housing with the kids late that evening and things were getting pretty wild...I have to admit that I was chasing him too...anyhow, he was running away from us and decided to jump up and over the couch. When he landed, his ankle just snapped. I could tell right away that he had really injured it. I knew he was hurt, but couldn't contain my laughter...I know, that is horrible of me but we all know how often we tell our kids "don't jump on the furniture!" and well, Pat made a perfect example for them.
I took him to the ER and the Doc there said it was just a bad sprain. They didn't send him home with anything other than an air-cast. I knew better, so stopped at Walgreen's and got him some crutches. Sunday morning the ER called and radiologist said that Doc had miss-read Xrays and that it was broken. They asked us to come back in to have it looked at and splinted. Poor guy, it was painful and very frustrating for him. It was the right ankle, so he couldn't drive. I drove him around the first week or so. It took us a few days to get in to the Ortho Doc. He said that it was a minor break and that from the Xrays it looked as if Pat had some old injuries to that same area. Pat agreed and it explains why his ankle just snapped finally. He is walking on it now and driving. I know he is bummed that he is missing ski season and his season pass is just going to waste, but we are very relieved that no surgery was needed and that it's healing up pretty quickly. He is now trying to catch up on everything at work that he wasn't able to do and get back into his normal routine of things.
He is taking Lilly to a "Prince and Princess Ball" tomorrow. Lilly was worried that he wouldn't be able to dance with her, but he has assured her that he is ready to "dance". I promise to have lots of pictures!