Tuesday, May 23, 2017

The last year...

May 26, 2016: We finally got the okay early in the week that Amos and Maria could come for 30 days, with the hope that we would receive ICPC and they could stay forever. Their great grandparents packed up their belongings and arrived at our home late afternoon. It was a BIG day! Franklin got braces, Ari celebrated his 11th birthday, and our two new littles were finally home. It was bitter-sweet for Nana and Papa, and we were conscious of their breaking hearts, and the newness of everything for Amos and Maria. We received ICPC in the following weeks, so they were here to stay.

The next three months: We expected Amos to be a handful. He was a handful when we had spent time with him in Kansas. We dealt with biting, choking, pinching, hitting, and completely ignoring us when we called his name. After a month, the difficult behaviors were few, and he had become very loving and sweet, while constantly wanting group hugs.

Maria had always been so sweet, and easy, so our struggles with her were completely unexpected. Ligon, who was four at the time, became her target. She stomped on his toes as she walked by, punched him in the stomach, dug her fingernails into his arm, bit, hit, pinched, and scratched him...those were the incidents I saw. There were many, many more when I was not in the room. We made every attempt to make sure she was never alone in a room with him.

Tantrums. Tantrums were a constant. If she got in trouble, I would place her in her chair in the kitchen, and stay with her. She would dig her fingernails into her arm, beat her head on the wall, hit herself in the face, scratch herself, and scream. There was no way to calm her down. Anything we asked her to do ended in a tantrum. We never knew how long it would last. One tantrum lasted one and a half hours. It was exhausting...for both of us.

Anxiety. We learned that we could see the anxiety in her face. High anxiety=big tantrums. High anxiety=extreme clinginess, incessant talking, whining, lying, and arguing. I had never experienced lying from a two year old. I was at a loss for how to deal with this behavior. She argued about every...every....everything! If I said a cup was pink, she would argue and say it was blue.

We had a visit from family. It was fine while they were here, but for two weeks after they left, it was a nightmare. We were sad for her. We were sad for us. Any progress we had made was lost.

"What have we done?" Yes, through tears I asked myself this more than once. Her behavior was extreme compared to anything I had seen in my first seven children. Her behavior made it difficult to love her...difficult to like her. She was physically abusing my "baby" and I was growing weary. I hated the way I felt toward her, but I didn't allow her to see my struggle. I was told, "Fake it until you make it! Keep pretending to love her, and someday you will realize that you really do love her!" She was sweet when we left the house, but the moment we got home her temper flared, and life became difficult. Sometimes we left for the day just to have some peace.

"I love you and I like you." People would say, "Awwwww...that's so sweet!" It wasn't. Do you want to know why? Because she would say it 50 times per day! I am not exaggerating! Sadly, what we have realized is that she does this when her anxiety is heightened. It breaks my heart! I want her to tell me she likes me and loves me, but not 50 times per day...because I don't want her living her life in a constant state of fear and anxiety. No one should live like that.

Six months: Amos was settling in well. He was learning more signs, and looking to me for approval. He was still a handful, but we expect that for quite some time. He is five, but he has Down syndrome, so he is like a toddler in many ways. The "terrible twos" may be here for a while.

Maria was still struggling, but no longer physically abusive. The whining, lying, incessant talking, and tantrums were wearing on everyone's nerves. I began getting out of the house, periodically, to renew my patience, and to get a break. I looked for opportunities for my older children to get out of the house, so they could get a break. Some days, 90 percent of her waking hours, were spent in tantrums.

Guilt. Oh, the tremendous amount of guilt. I thought I would instantly feel like her mother, and love her as I do my other children, but I was struggling. I was so weary of the difficult behaviors. I dreaded getting out of bed in the morning, and couldn't wait for nap time and night time, so I could get a break. I was sinking into depression, and wondering if it would ever get better. For some families, it never gets better. I was trying to figure out how I could live like that. There were two adoptive moms I confided in. One said, "Hang in there, Kerry! It WILL get better! There is something magical about the one year mark." The other friend said, "I know how you feel. I know what you are thinking...'I wish I could go back to life before them. I wish I could have things the way they were.' But, don't linger there, Kerry! It is normal, trust me, but you are exactly where God wants you, and those kids are exactly where God wants them. It will get better!" Oh, how I wanted to believe them!

Nine months: Behavior was not improving. After doing some research online, I came to believe that Maria has Oppositional Defiant Disorder, and Reactive Attachment Disorder. She has not been formally diagnosed. I have sought, and sought a counselor who has experience in the area of adoption, trauma, and these two disorders. It is proving to be very difficult. I was sinking even deeper into depression. I thought about my friend's words that there was something magical about a year, but we were only three months away, and there was no improvement. She was very difficult, and I was struggling to deal with the behaviors on a daily basis.

One year: We are almost to the one year mark. Three more days. Is it magical? Possibly. Over the past two months, Maria has begun to bond with her daddy. Every evening when he gets home, he changes his clothes, comes downstairs and says, "Mia, get your boots on! Let's go to the barn!" She jumps up, walks hand in hand, and talks his leg off. This is new. This is good. Something is changing. Over the past three weeks we have seen her relax. It is hard to explain, but Roger and I have noticed that she seems to have found her place in the family. She still blames Ligon for everything, and tries to argue with him, and lies about him, but she is SO much better than the first three months. The tantrums are nearly gone. She makes good eye contact with me when I rock her at night. I still think she has the two disorders I mentioned, but I think the affects are beginning to subside a little. She tells me several times a day "I love you and I like you," but we are down to probably 10-20 times per day, so that is much improved. As I was putting her in bed tonight she said, "Mommy, I like you and I love you. Do you know how much I love you?" I said, "How much?" She said, "I love you forever." Be still my heart. As for me...I like her and I love her. I guess you could say we have both come a long way. It is still hard, and we are still adjusting, but I love them so much that I could not imagine my life without them. We are still in the trenches, and could still use some prayer, but I look forward to seeing how far we have come one year from now.

Wednesday, June 17, 2015

Update on Ian...April and June

In April we took Ian back to the Otolaryngologist in Cincinnati for a follow-up appointment.  The appointment had been pushed out a few times because of weather and other circumstances.

Appointment with doctor update...April:
Everything looks good.  Ian doesn't seem to have any extra fluid in his ears, and no signs of a cholesteatoma at this time.  Ian talks in a high-pitched voice.  The doctor believes this has nothing to do with his hearing, so he encouraged us to remind Ian to talk in his "normal" voice.  Ian is having a difficult time learning his letter sounds for school, and has a very difficult time hearing letter blends.  There are concerns that his hearing loss is making this difficult for him.  I don't know how to teach a child to read if he cannot hear his letter sounds. Many children with a hearing deficit in one ear struggle academically, and we are already seeing that struggle. We have the option of seeing a team that would determine if hearing loss is causing Ian to be behind behaviorally, and how we can help him.  We are putting this on hold for now.

Appointment with Audiology..April:
The hearing test was worse than last time.  That is concerning.  Instead of "severe" hearing loss, he is now considered "severe to profound" and has been diagnosed as "Unilaterally Deaf."  This was really sad to hear. A typical hearing aid will not work.  After meeting with the doctor again he said he could no longer do surgery to help Ian. The Audiologist wants us to come back for a follow-up appointment to discuss his diagnosis, and to try two different hearing aids to see if either will help him.  She would like to try a BAHA (bone conductive aid), and a CROS.

Follow-up with Audiology...June:
We met with the audiologist again yesterday.  She did another hearing test because she was concerned about the difference in results from the previous two tests.  She thinks the last test was not as reliable because she can tell that Ian loses confidence when he cannot hear a sound well.  Rather than guessing if he is hearing something, he will say he hears nothing.  She was very skeptical that a BAHA would work for Ian because he has Mixed Hearing Loss, and because it is profound.  This means he has conductive loss, and sensorineural.  To further clarify, this means the loss comes from a problem in his middle ear (conductive), such as a bone problem, and the inner ear where the cochlea and nerves are located (sensorineural).  The conductive loss brings his hearing down to a moderate loss level.  The sensorineural brings his hearing loss down to profound on certain frequencies.

After doing the hearing test again, the audiologist wanted to try the test using a BAHA on his right ear.  The results were so much better than she had hoped.  She was very skeptical that it would work.  When testing him at a normal speaking range, Ian tested at 88%!  He could hear, and articulate 88% of the words in his RIGHT EAR!!!  She masked the sound in his left ear, so that he could not hear anything, which means all sound was being registered to his deaf ear.  This is HUGE!  Of course, as the sound was softened the results were not as great, as expected, BUT he still has good hearing in his left ear to compensate for that deficit.  And, this gives him stereo sound!!!  And, the BAHA still helps sound that he cannot hear in his right ear carry over to his left ear.  This is exciting news!!!  The BAHA won't give him perfect hearing in his deaf ear, but it is helping to bring the hearing up to the conductive loss, which is at the moderate level.  We'll take it!

We have borrowed a BAHA from the audiologist that Ian wears on a headband until we can return to Cincinnati and meet with her again, and the doctor on the same day.  The doctor will be excited about these results!  We will meet with him to discuss surgery for Ian. The surgery would include the doctor making an incision about an inch behind Ian's ear and placing two screws, called abutments, into his skull.  They are very small!  The reason for placing two, is to have an extra just in case something happens to one of them. After a 4-6 month healing period, where the bone naturally grows and grafts around the screw, we will meet with audiology again to attach the BAHA to the abutment.  While waiting for healing, Ian will continue to wear his BAHA on a headband.  Once healed, the BAHA snaps onto the abutment.  It is easy to take it on and off.  Ian will be able to do it himself.

Ian's BAHA is made by Oticon Medical.  He needs the most powerful one they have because of the mixed hearing loss, and because the hearing loss is so great.  He didn't have much to say when we were meeting with the audiologist, but as we were walking out he told his daddy, "I like it!  I can hear better!"  He wasn't too thrilled about wearing the headband.   It was uncomfortable at first.  He is getting used to it.  We are calling it his "Robot Ear," which he thinks is really cool!  If you see him, make sure you ask to see his "Robot Ear" and tell him how cool you think it is!  If he is around your children, please talk to them and let them know that Ian will be wearing something on his head to help him hear better, so they are prepared when they see him again.  I think it will help smooth things over for him.  We bought him a really cool hat on the way home, so he can choose to wear his hat whenever he desires!  We think he looks pretty awesome without the hat, too!

Wednesday, September 10, 2014

Dear Mom who is ahead of me in life

Dear Mom who is ahead of me in life,

When you say, "Enjoy these days, dear.  If you blink, you will miss them.  You will miss these days when your little ones are raised," you will need to be a little more specific.

 I get the gist of your statement.  No, really, I do!  But, when I am tired, and I have just finished cleaning up the, what seems to be weekly, broken glass off my kitchen floor by vacuuming on my hands and knees to make sure I get every.single.shard, and then mopping while my back is killing me, and then another child comes to tell me that so-and-so has just peed on the bathroom floor upstairs, and then another child grabs the bucket of school supplies that has been placed high, so that others cannot reach it, but then it dumps all over the living room floor, and then another one says, "Uh-oh, mommy, I made a mess," and you turn around to find goldfish all over the floor...well, I'm thinking, "NO WAY!  I will NOT miss these moments!  I'm going to blink as fast as I can!"

So, you see, for those of us who are behind you in life experience...we need you to be more specific.  What will I miss?  Tell me about the special moments you miss, so that I can hang on to them for dear life in the really difficult moments.

For those who are behind me in life experience, please allow me to share the moments to hang on to:
-those first moments with your newborn
-that sweet newborn smell
-the smell of baby lotion
-sweet, squishy kisses
-the first smiles
-yucky, slobbery baby kisses on your cheek
-the triumph of sitting up for 10 seconds...the first time
-the triumph of crawling...the first time
-the triumph of first steps...the first time
-hearing "mama"
-all of the first times
-indescribable baby giggles

I know when you are in the midst of sleep deprivation, and you're hungry, and you need a shower, but feeding the baby is the most important thing on your agenda, and at the moment, it is difficult to see what you will miss.  I feel ya!  I'm right there with you, but in the toddler zone!  I know there are things I will miss about having toddlers, but for now...I'm so busy I don't have time to think about it!  I think I need to spend some fun time with my kids this afternoon, and savor the fun moments!

Wednesday, August 27, 2014

Teaching manners...Asking for things politely

When my children want something, I don't want them to say, "I want this," or "Get this for me."  My desire is that they ask nicely and politely, with what I consider good manners.  For my older children, who have years of experience with manners, they still forget to ask correctly.  My response when they don't ask with good manners is, "No," and then I follow it up with this: "If you would like to ask correctly I might reconsider."  This is not said firmly!  I'm not a harsh mommy!  It is said more jokingly, but in a way that they know they need to go back and ask again.

So, how do I teach manners in the early years?  With chocolate, of course!  I was just working with my three littlest children and trying to teach them how to ask politely.  Before each of them would get a piece of chocolate they would ask, "May I have a piece of chocolate, please?"  Then, they were told to wait to ask for another piece until the last piece was chewed and swallowed because my five year old reminded everyone that "we don't talk with food in our mouths," which cracked me up because he said it with a mouth full of chocolate.

See?  Teaching manners can be fun and delicious!!!  Of course, it will take many, many, many reminders in the coming years, but in the future I see myself with young adults who are respectful, kind, and very polite. At least, I hope so!

Next post...Teaching Obedience!

Tuesday, August 26, 2014

What do your children think about you?

Do you ever wish you could have someone interview your children, asking their thoughts on you, and secretly video tape them? Something like this was done a while back.  Mothers were asked "What kind of mother are you?," and they were in tears, mostly focusing on their failures.  When the children were asked about their mothers, not a single failure was mentioned.  Of course, this brought the mothers to tears to see that they weren't actually failing their children.

The last two weeks have been tough for me, as a mother.  Based on the numerous comments I have received from friends, either on facebook, or in-person, about my "bad day post," it is apparent that the first few weeks of school can bring out the worst in mom's and children, alike!  And, maybe it isn't just the first two weeks of school, but the struggle we have, at times, as parents.  That stinkin' lack of patience!!!  It brings out selfishness in us every.single.time!

My little three year old says some really cute things!  Yesterday she said, "Mommy, I need to work on my letters, so I will know the sounds of the applebet."  Sometimes, it's just too cute to correct!  When I put her in bed each night we go back and forth about how many songs we will sing.  She always puts the pressure on for "just one more, Mommy!  Pretty please, with a cherry on top!"  It's a rare occasion that I say no.

Each of my children have their own song that my husband and I made up for them before each were born. Last night she wanted to sing Franklin's song, and then Ari's song.  I told her she had one more choice before going to sleep.  She said, "I want to sing the KERRY song!"  I told her that I didn't have a song.  She disagreed and began singing in her high-pitched, sweet, wobbly little voice.  It began like this:

Kerry is niiiiiiiiice.
Kerry is going to sleeeeeeep.
She loves to pray for people.

Wait a second.  What?!  Wow!  I just got a glimpse into how my littlest daughter views me, her mother.  I'm not failing her!!!!  Maybe in moments, but in the BIG PICTURE...I'm not!  The fact that she views me as a woman who loves to pray for others is completely astounding to me.  I think I will have her sing to me again tonight!

Do you see, Mommy?  The bad moments are bad, but most children don't focus on the bad moments.  They focus on the love you have for them, and the life you live before them!  Go back and read that last sentence again and again and again! Sometimes they imitate our bad behaviors (those moments of that stinkin' lack of patience!), but they are, without a doubt, watching our daily lives.  If Bethany sees me as a woman who "loves to pray for people," then perhaps she will grow up to be the same!  The thought of that blesses me beyond measure!

I'm not saying that you should never focus on your failures because that is part of God changing you into the woman He wants you to be!  We always want to be better...more like Christ...right?  Don't let your perceived failures drown out the "good mom moments" you have with your children.  Let your life exude the love of Christ before your children.  They are watching...the good and the bad.  They are also learning from you...the good and the bad.

Proverbs 31:26-31
She opens her mouth with wisdom, and the teaching of kindness is on her tongue.  She looks well to the ways of her household and does not eat the bread of idleness.  Her children rise up and call her blessed; her husband also, and he praises her.  Many women have done excellently, but you surpass them all.  Charm is deceitful, and beauty is vain, but a woman who fears the Lord is to be praised.  Give her of the fruit of her hands, and let her works praise her in the gates.

Tuesday, August 19, 2014

Bring your children to tears...in a good way

If you didn't read my post from yesterday you should stop reading now, and go back.  It was a bad day.  It really wasn't good for anyone in our house.  It stretched me.  I was overwhelmed.  I was frustrated.  I was impatient.  I was not myself.

I knew I was wrong about how I handled the day.  Along with groaning and complaining from my children, there was a lot of that going on in me, too.

As we sat at dinner last night, my oldest two were trying to get the others quiet because "mom has had a bad day."  Franklin prayed before dinner last night and said, "Thank you, God, for a good day."  Lauren and I both laughed, Franklin looked up and smiled, bowed his head again, and said, "Well, it wasn't such a good day.  Maybe you could make tomorrow better?"  We laughed again.

This was the most important part of our day.  It was pivotal.  It may be pivotal in my children's lives.  It was time to "make things right."  I knew my attitude was wrong throughout the day.  It was time to talk.  Through tears, I told my children that I was sorry for my behavior, my attitude, and my lack of patience.  I asked for their forgiveness.  One by one, they each came to me with tears streaming down their faces and hugged me, and said, "I forgive you, Mom.  I love you."

Dear Mom,
Do not let pride keep you from asking forgiveness from your children.  Do not let pride keep you from admitting when you are wrong.  You set such a wonderful example of a godly life, and your children learn so much from that example.  You soften their hearts when you admit your mistakes.  Your children know you are not perfect.  You don't need to pretend.  But, when you mess up...make it right!  It is the perfect opportunity to train their hearts.  They are watching you!!!  God is using you!  Bring tears to their eyes!

May your day be filled with love, grace, forgiveness, truth, giggles, hugs, cuddles, and fun!

Monday, August 18, 2014

An Exasperated Mom

Day 1, week 2 of another school year...
Breakfast*say goodbye to daddy*I start reading History to the older 5*lil'6 says, "Mommy, Ligon is pottying on the floor!"*Stop History*Clean up pee*start History*lil 5 says, "Mommy, Ligon is making a mess!"*stop history*check on Ligon who has chocolate on his hands and face and wonder where he got it, and what surfaces he managed to make messy*clean Ligon*find opened Ovaltine*hear arguing in the kitchen*go find out what is going on and get things back on track*start history...again*continue to bring attention of 3 & 4 back to History instead of la-la land*assign short writing assignment*go start laundry*Ligon, in a hurry, and walking funny, says, "Mommy, I need to go potty!*found lump of poo in underwear*accidentally dumped poo on floor*Ligon steps in poo*begin cleaning poo while Lig finishes on the toilet*clean up Lig*go settle another argument*answer a bazillion questions because no one seems to remember anything they have been taught since beginning school however many years ago, and have no confidence in doing anything independently*settle another argument*do more laundry*answer more questions*work on kindergarten with lil5*clean up more potty*I still hate potty training*work on Phonics and Science with 3 & 4*answer more questions*do more laundry*settle another argument*clean up more potty*eat Swedish Fish*and it is finally time for lunch.

What?!  The day is only half over?!  I'm done!  I need a personal holiday!  I need a shower!  I need more coffee!

 I need...grace...and patience...and wisdom...and discernment...and a loving heart...and forgiveness.  

The constant interruptions, and fighting, and complaining, and messes, and questions have caused me to feel utterly, and completely overwhelmed, stretched beyond my limit, and exasperated!  My responses and feelings are what get me in trouble.  Am I filled with patience and grace with my children?  My answer is a resounding, "NO!!!"  I have been impatient and frustrated.  Yes, there are issues in my children's hearts, but I have been no shining example to them today.  It's another day of grace-filled, difficult lessons in this mommy's heart.

So, why would I write about the yuck in my life?  I want to document this day for further use!  Someday, my children will be grown up, and will no longer live in my home.  Someday, my children will graduate from high school, and I will have a tremendous sense of victory that I was their teacher for all these years.  I want to remember that not all days were easy and fun, and that there were moments of total desperation.  I want other moms to know that they are not alone.  There are some really tough days.  

I have moments when I think...Could I put them in school?  Why am I trying to do all of this?  This is too much for one person...cooking, cleaning, tons of laundry, teaching...never a break...not even while taking a shower!  Life would be so much easier if they were in school.  Those are just moments.  The fact is I love having my children home with me.  I wouldn't have a million questions to answer throughout the day, or arguments to break up, but I also wouldn't have the sweet moments either.  It would make me sad not to see them all day, and then make them do homework when they get home, and miss out on time with them.  And that's just the beginning!  There are so many teachable moments throughout the day that I would not get to have anymore.

If you're like me, and experiencing a very bad, no good, frustrating, exasperating kind of day...reevaluate your schedule, determine whose hearts are at fault...yours or your childrens, or both...think about why you are doing this, pray, and exude grace.  Tomorrow is a new day!

Wednesday, July 23, 2014

Prepping for another year of school 2014-2015

The Summer has flown by, curriculum has been ordered, new markers, pencils, and glue have been purchased and it is time to plan and get organized!

I have been asked several times about our schedule, which worked really well for us last year, so I did a little bit of tweaking for the upcoming year, and I'm ready to share.  This is what our days will look like...in a flexible kind of way:

Notice it is in dry erase marker, so it can easily be erased and re-tweaked!  As for the highlighted areas, here is an explanation:
Mastery:  I don't want my children to just finish their work.  I want them to "get it."  They need to learn the information, and it needs to be committed to understanding.  If they do not master their work, then their work will suffer in the future because they will lack knowledge/understanding.  I would rather them take more time on an assignment to make sure they completely understand what they are doing than to skim over an assignment.
Be Flexible:  This is just a family motto!  We have nine people living here, so flexibility is a MUST!  The times on this chart are not written in stone, but rather a guideline to keep us moving throughout the day.
Practice Excellence, Not Perfection:  If I were to expect perfection from my children then I would be in grave error to the well-being of my children.  What I do expect is for them to always do their best!  I continue to remind them that we "do all things for the Glory of God."  Let's face it...right now it is more about pleasing mom and dad, but the concept is being instilled in them to always do their best, and to give God the glory in all things accomplished.

You may look at this chart and wonder what ZONES might be.  This is what it looks like, and then I will explain:

ZONES are my way of keeping the house as tidy as possible throughout the day, so the mess doesn't overwhelm us when the evening comes.  Think about it...if you have a few dishes on the counter then it is easy to wash those few things by hand, or put them in the dishwasher, but if your counters are full of dishes it can be a bit overwhelming.  It's the same for our children!  If they only have a few things to pick up then it isn't so bad, but if we waited all day then there would be a lot of gnashing of teeth  whining and complaining. If we keep it fairly maintained throughout the day then it isn't so bad.

We have broken our home into ZONES, so that one child takes care of one zone.  I had found that there was a lot of conflict between children, if I sent two or more into a room to clean.  One child always felt that he was doing a majority of the work.  And, he was!  When each child was accountable for their own zone then the conflict was bypassed, and each child had to be self-motivated and disciplined to get the job done.

Expectations of ZONES:
Living room:  Pick up shoes, clothes, toys, and anything else that belongs to others and place in a box at the bottom of the stairs.  These items are to be picked up by the rightful owner by the end of the day. They are to also straighten the school table, and look under the sofas for any sippy cups, or whatever found its way under there, and place sofa pillows on the sofas.  Vacuum, as needed, but definitely before the weekend.

Play room:  Self-explanatory!  Clean up the play room!  The three littles are expected to help since they are the ones who probably made the mess.  Vacuum, as needed, but definitely before the weekend.

Bathrooms/Kitchen:  For the bathrooms they are expected to wipe down sinks, faucets, and toilets. Bathrooms get vacuumed/mopped by the weekend, and mirrors get cleaned, as needed.  Their kitchen responsibilities are vacuuming/sweeping after each meal, mopping, as needed, help clear the table, and wipe down the table after each meal.

Van:  The van could get dumpy pretty quickly, but if we stay on top of it, then it isn't too bad.  We stay home a lot, but those who have this zone need to make sure the van gets cleaned out after we go somewhere.

Trash:  This is always Ian's zone.  He is five.  He empties all of the bathroom and bedroom trash cans.  He thinks it's pretty cool to be helping!

Dishes:  Again, self-explanatory!  This has been Lauren's zone for a few years, but Franklin is moving into a rotation with Lauren next week, so they will have the job a week at a time, and will take another zone when they don't have dishes.  Lauren is excited to move into the regular zones and not have to always do the dishes.  Of course, her dad and I help her frequently because the girl needs to get outside to play in then evenings!

Kitchen helper:  This is everyone's favorite!  They get to help me cook, and serve dinner.  I love the one-one-one time I get with each of them, and enjoy teaching them to cook.

Anyone who is not my kitchen helper for the week has a Buddy.  The three littles love this because they get special time with one of the biggers.  They get to read, or play with legos, or make things with play dough, or jump on the trampoline, or whatever fun activity they can come up with.  Buddytime is when I am cooking and need to make sure that little ones are not getting into mischief.  I love the relationships that are budding during this time, as well.

Here are our bookshelves that are nearly ready for school...with the exception of their new school books. There are lots of books for reading, and research, and learning!  The two older children have their own black box for their own schoolwork.  Ari, Miles, and Ian each have a white box, but may need to go up in size to a black box this year.  We'll make that decision when their new books get here.

Wednesday, July 9, 2014

Ian's trip to Cincinnati...Otolaryngology

Roger, Ian, and I left for Cincinnati Monday afternoon, so we could spend the night close to the hospital where we would be taking Ian the following morning.  We could have left home really early Tuesday morning, but we weren't familiar with the area and we would have had to pass through rush hour traffic somewhere between here and there.  We didn't want to miss the appointment!
We are so pleased with our new doctor.  We got there, registered, and were seen by the doctor at the exact time of our appointment!  We didn't have to sit and wait for an hour!  Amazing!  I had typed out a timeline of all of Ian's illnesses and surgeries, and the doctor was grateful.  We talked for a few minutes and then he said, "Let's go to the other room.  I'm excited to see what's going on in there!"  I love his interest in Ian's case!
He took us to another room with special equipment that would allow him to magnify things to see better, but also enabled us to see inside Ian's ear on a TV.  It was really cool!

The appointment:
Both of Ian's eardrums are retracted.  That means they are both being sucked inward.  This, typically, happens when there is fluid in the inner ear, which Ian has in both ears.  There was mild retraction in the left ear, and more severe in the right ear.  The doctor does believe Ian had a cholesteatoma, which is a growth in the inner ear that can do a lot of damage.  After looking in Ian's ear, and looking through the CT scan, he sees no evidence of a cholesteatoma at this time.  The cholesteatoma was removed when Ian got tubes in his ears 3.5 years ago.
The doctor said that Ian's ears look "pristine" when looking at the CT scan.  This is great news!  The bones are there, and they are not damaged.  He has no abnormalities in his ears.  Ian's eustachian tubes were cloudy on the CT scan, which could be the reason that he has trouble with fluid in his inner ear.  As he grows this should resolve, but it is a problem right now.  This is the reason many kids need tubes when they are young.
We did another hearing test in audiology because the doctor was concerned with the results with the tests from the February vs. March testing.  There was a big difference between the two tests.  The results from yesterday showed very similarly to the March testing, which we thought was more accurate anyway.  Ian has severe to profound hearing loss in his right ear.  With fluid in his left ear at this time, he also has minor hearing loss in his left ear.  We talked to the audiologists who talked to us about doing a hearing aid consultation.  With fluid in his ear, and severe hearing loss, including nerve damage, they were unsure if some hearing aids would be helpful because they thought the sound would be distorted and make things worse for Ian.  It is possible that a bone conduction hearing aid may be beneficial for Ian.  We may do the consultation in the future, but our doctor suggested we wait for now.

There is fluid behind both ear drums.  This does affect his hearing.  It won't matter much for his right ear since his hearing is so bad, but now he has a hearing deficit on his left side, too.  Ian may need a tube in his left ear to bring his hearing back up to normal in that ear, so he at least has good hearing in one ear.  The tube would release the fluid, his ear drum would no longer be retracted, and his hearing would be restored.

Ian has nerve damage in his right ear.  The nerve damage, alone, brings Ian's hearing down to a minor to moderate hearing loss.  The doctor thinks Ian may have been born with this damage.

Something is wrong with a bone, or bones in Ian's right ear.  The bones are not vibrating together like they should, which is creating the severe to profound hearing loss.

The doctor is confused by Ian's case.  He cannot see anything to indicate why there is severe hearing loss in his ear.  He is wondering if a small cholesteatoma is hiding in there.  We will go back in 6 months to see if anything has changed, and to see if there is still fluid in Ian's left ear.  If so, we will likely need to go back, so Ian can get a tube placed in his left ear.

Placing a tube in his left ear is likely.  The right ear is not so easy.  The doctor could explore and look for a cholesteatoma, or anything else that could be causing problems.  He could also fix the bones.  Even if he fixes the bones, Ian will still have significant hearing loss because it will only bring his hearing up to the level where the nerve damage allows hearing.  Yes, it is much better than where he is now, but he could probably wear a hearing aid that would bring his hearing up to close to normal.  We're not sure that surgery is the best option.
We have some questions to go through in the next several months...
Do we get the tube in the left ear?
Do we do surgery to fix the bones in Ian's ear, and then get a hearing aid to bring his hearing all the way up to normal?  When not wearing the aid, he could still have much better hearing than he has now, but still not good hearing.
Do we forego surgery altogether, and try to find a hearing aid that works for Ian?
Can we find a hearing aid that will work for Ian, without distorting the sound?

Conclusions for now:
Do nothing.  That was the doctor's suggestion.  We love that suggestion!  We love it that we are not being pushed into surgery!  No further damage will be done, so we have time to think through everything.  We will go back every six months for a while.  At our next appointment, the doctor will look again for a cholesteatoma.  Ian will also go back to audiology for another test to make sure his hearing is the same, and to check his left ear to see if we need to get a tube.  If there is still fluid and hearing loss in his left ear then a tube is probably going to be the answer.  We need to maximize his hearing in his left ear.  The doctor believes that homeschooling is a huge benefit for Ian.  Woohoo!  Kids who go to school, and have a hearing deficit, typically experience an academic decline when they reach fourth or fifth grade.  The doctor said we probably won't experience a decline since Ian will be home.  Wonderful!

Ian is happy, and healthy, and developing very well, which is really great news!  His speech is good, and he has no learning disabilities, so we don't need to rush into anything.  We feel so good about waiting to do anything, and going back in six months.  We are really happy with our new doctor.  He is excellent!  It's good to have some answers, and peace of mind.

Sunday, March 16, 2014

An Ian update...discovering hearing loss and where we go from here

Our gorgeous little Ian turned 5 last month.  I took him to the ENT on his birthday.  He got tubes placed in his ears 3 years ago, and although both had come out of the eardrums, one was still stuck in the ear canal.

In December, Ian had asked to listen to music on my Kindle.  Lauren got it set up with his favorite songs and earphones.  Our earphones were broken.  Only one side worked.  She placed them on his ears and he told her he couldn't hear it, and asked her to turn it on.  She put them back on her ears, and told him that they were working fine.  She placed them back on his ears, and he said he couldn't hear the music. She took them off again, listened, and then placed them back on his ears, but switched the working side to his left ear.  He smiled, and said, "Oh, now I can hear it!"  Lauren came straight to me and told me what had happened.

Later that evening I sat with Ian, the broken headphones, and the Kindle.  I placed the working side on his right ear and told him to tell me when he could hear the music.  I slowly turned the music up until it could go no louder...he couldn't hear it.  I placed the working headphone on his left ear and did the same.  I began turning up the music and after a few seconds he told me he could hear it.

I knew there may be some hearing loss because of ear infections before getting tubes, but had hoped that impacted wax was reducing his hearing.

After the doctor cleaned the tube and wax out of Ian's ear he looked closely at his eardrum using a special microscope.  He told me that his eardrum was retracted, and looked somewhat flat.  He recommended that we do a hearing test asap.  Thankfully, there was an opening at that moment, so we walked straight over to the audiologist.

After the hearing test we were told that Ian had "moderate to severe" hearing loss in his right ear.  We were also told that the test was "not normal," and they felt that it was "inconclusive," so they wanted him to come back in a few weeks.  They thought that maybe his age, or the fact that it was his first hearing test was affecting the results.

We took Ian back to the doctor March 5th for a second hearing test.  Roger was able to go with us this time.  The doctor was hoping to see better results (so were we!), but the results were worse.  I, specifically, asked the doctor if he was still in the "moderate to severe"range, or if it was worse, but the doctor told us it was the same.  We asked what caused the hearing loss and the doctor said, "I really have no idea.  He may have been born that way, or it may have been caused by ear infections, which caused a cholesteatoma." He then recommended that we see a specialist (all this time we though he was the specialist!) called an otolaryngologist.

I had taken Ian to his pediatrician earlier in the day for a well-visit.  I told her about the hearing test, and that we were going for another hearing test later in the day.  She said, "Yeah, didn't he have a cholesteatoma?"  I had completely forgotten about it, and didn't even know there was a name for it, but then remembered that the ENT said he had cut a growth out of Ian's ear when he put tubes in.  We thought it was really strange, and the doctor seemed to think it was large, but we were given no other information.

After our appointment I hit the internet to do some research.  What did we do without the internet?!  I began reading about Cholesteatoma's.  It didn't take, but a few minutes to realize what likely caused Ian's hearing loss.  We are grateful that it didn't do more damage.  BUT, why didn't our doctor know that it was likely to cause bone damage, and therefore, hearing loss?  Why didn't our doctor tell us that we should see a specialist to monitor his condition to make sure it didn't grow back?  As I am reading page after page, and looking at videos about this condition, I begin wondering how our doctor was able to cut this "growth" out of his ear without cutting behind his ear.  Did our ENT do further damage to his ear by cutting it out?  Why didn't our doctor suggest that Ian get his hearing tested after finding the cholesteatoma?  Why didn't he tell us that "if" Ian's bones in his ear were damaged that he may need reconstructive surgery, placing a prosthesis in his ear that could restore some of his hearing?  Did our "specialist," our ENT, know nothing about this condition, and did he make a mistake removing the cholesteatoma?

I also found in my internet searches that Ian is not only considered "severely hearing impaired" (he is totally out of the moderate category), but he is also classified at the "profound" level at one of the tested frequencies, and close to profound on another frequency.  Why did the doctor not know this?

At this point we don't know if our doctor is trying to cover his tracks, or if he is truly unknowledgeable about this condition.  If he is unknowledgeable then he never should have touched the cholesteatoma!  If he is covering for himself...he needs to be held accountable.

Our next step is to take Ian to Cincinnati Children's Hospital to their Ear and Hearing Center.  Ian got a CT scan March 10th, so we will be able to find out how much damage has been done to his ear, if the cholesteatoma has grown, and if reconstructive surgery can be done, which might restore some of his hearing.  We are hoping for a trip to Cincinnati in July for some answers.  For now, this mama is nervous, and so sad that this precious little boy is nearly deaf in one ear, and will have to go through more tests, more specialists, and possibly surgery.

I know...things could be much worse.  I have thought that so many times in the past month.  Overall, he is healthy...he is happy...he is a joy in our lives.  He can still do one of his favorite things...listen to music! Still, no mama wants her child to endure hardship and pain.