Doc-free week

We don't have many weeks where we are doc-free. Usually someone has some appointment somewhere. This week, however, that's not the case. We have lots of things buzzing right now for us personally but we hope to soon have our stresses behind us, and at some point begin to enjoy our summer vacation!

This summer we plan to go to the beach and Gage also has summer camp which he is looking forward to! My baby will be gone a whole week, not sure I'm ready for that!

Brook goes for mapping in two weeks. It's amazing how little SHE needs adjustments while Gman is still going every few weeks. He has had some itching today on one side but nothing to really worry about. First complaint he's had in quite some time!

Next week isn't going to be doc-free. Gage goes back to the dentist and Brooklyn will have her appointment regarding those tonsils...
She's had strep throat like 7 or 8 times within the last several months so the last time (a couple of weeks ago) at the local E.R. we were advised to go see our ENT. So we will. Lord help us all if this child has to be put to sleep FOR ANYTHING. She's nothing like Gage and I promise she won't go pleasantly! But we'll worry about that later! I need to get out by the pool and relax! REALLY!

Very Weird

So just a quick update on Gman's medical symptoms...he's had really nothing to write about. His vision checked out fine, his check up went fine, though we discussed upping his dosage of his ADHD meds. After we go to the beach and after he gets back from camp, I'm going to pull him off his meds for a trial period and see if he has any more headaches.

The month of May hasn't been totally uneventful. About two weeks ago, he did come home from school and instead of playing outside he stayed in...very weird. He was fine at first but then he told me he was STARVING. So I fixed him something to eat, he looked at it with his hungry little eyes and then felt sick. He went to bed-ears off-lights off. He rested for a while and felt much better...it did seem migraine-ish to me. If he is having those again (we were told before he seemed to have migraine symptoms) I'll have to look for the triggers. Since his last episodes a couple of years ago, I've removed most chocolate, all orange juice and Ramen noodles and he's not had ANY MIGRAINES...until now (possibly).

But we are excited that he's had no itching, no chronic pain, no processor removal at school! We are also entertaining the idea (courtesy of the school nurse) that weather (particularly rain) may affect his discomfort. I can only imagine having your head cut open as many times as he has how some discomfort could be expected at times. I know that when it's supposed to rain, my finger that I broke a few months ago (playing football, lol) bothers me.

We start our summer break tomorrow!! Woohoo. We plan to 'fix up' the house a little, go to the beach, play hard and sleep past breakfast. Have a great summer everyone!

But I Don't Want To Be Deaf

I posted this on another blog and realized I should have done it here! So this is copied word for word.

Today was our first day back in church. We used to go every single Sunday but our tiny old church lost it's congregation and we all went our separate ways so we have sought after a new one. My idea of church is a small country church (Baptist or Methodist) with lots of songs, a great preacher and a child-friendly congregation and atmosphere. We found it.


As we sat down on the pew, we were automatically welcomed and saw friendly smiles flash our way. Today, it was just my daughter and I and she found a classmate to sit with, I joined them. As we burst into song, I heard hands clapping, feet stomping and people patting the back of pews as we all sang. I heard just the right about of country whine in the voices from behind...it was beautiful.

The preacher had us turn to a verse in our Bibles. He read it aloud and that single verse spawned a 45 minute sermon. He stood on the piano bench, he walked down the aisle, he got down on his knees. His voice was so loud at times, I could feel it bounce from my rib cage. He was full of enthusiasm and he assured us, "This ship ain't goin' down!" He talked about WHO should be Captain of our vessels and WHO is there when the water is rough, WHO is guiding us safely and WHO leads us and WHO stays with us when we feel like we are sinking.


I actually found myself shaking my head, getting carried away with the preacher's voice. I found myself crying when the beautiful little girl (almost 4) sitting on our pew sang OUT LOUD the words to a song that I had to read from a hymn book. While visually impaired, she may never be able to see the tiny words of the book but she's already received them through her heart. As tears filled my eyes at the beautiful sight, her mom told me she loves that song and sings if all the time at home. Her little voice could be heard over all others, and I'm so glad I got to be a part of that.


On the way home, Brook asked me how God makes babies. Luckily He gave me the proper words for her 7 year old mind. She then turns to me and says, "Does God make people have syndromes?" And again, he filled my mouth with just the right words. Without hesitation, my voice slipped over lips and answered the tough question.


"Yes. Sometimes, God decides that certain babies are going to be different than His other children. He decides to make them weaker in some areas and stronger in other ways. He decided you and Gage would be deaf." She quickly interrupts, "But I don't wanna be deaf. It's hard to hear!" I reply, "But He made you extra special so you could teach others. Had you not been deaf, so many people would not have learned about hearing loss, patience and understanding. God decided your ears wouldn't work but He's made you stronger in a lot of other ways."


She understood what I was trying to tell her. She now knows that God is the Captain, He is in charge and He sails the ship.

The Checkout Line

So Gage and I are in the checkout line, just minding our own business when an older gentleman in front of us is discussing the 'end of the world' that was supposed to occur yesterday. I'm placing my items on the belt of the counter when he says to me "I'm trying to figure out what's on his head!!"

Now, a few years ago, I might have been offended. However, he wasn't trying to be rude, he wanted to know! I smiled and said, "They are kinda like hearing aids, but more powerful. They are cochlear implants. He's deaf."

The man kindly returned a smile and asked what his name was. When Gage piped up and said, "My name is Gage" the man whirled his head around at me in shock. "He talks so good! I was married to a deaf lady for years and she never did learn to speak very well. I bought her all kinds of hearing aids and nothing seemed to help."

We chatted for about a minute before we both parted and went our separate ways. He was from Texas, he asked about the recent tornadoes and possible damage we may have had, and he learned about cochlear implants...

Spa-ring Fa-ling

So the kids had their Spring Fling at school yesterday. Some events use water, lots and lots of water. In fact, there was even a water slide. Kids were soaked. Teachers were soaked. Good thing most of then had a change of clothes!

My kids put a small case in their pocket to remove their processors as needed and then put them back on when finished. I was at school subbing so I was unable to go out there with my kids this year and I'm glad they are 'big enough' to handle it all themselves. I did have teachers emailing me the afternoon before asking what they needed to do and I was happy to tell them "nothing."

Brook did get in the car after it was all over, smiling her toothless grin with a wrinkled nose spotted with the most adorable freckles I've ever seen. She said, "Mama, I got confused on one of the water events. I didn't hear the instructions and when you were supposed to dump the bucket of water on your friend's head, I dumped it on my own." So cute. We laughed and I assured her that sounded like something I would do.

IEPs are outta the way. Easy as pie. We begin our summer break next Friday...and we are looking forward to it. Brook has another loose tooth which needs to come out today. If her big ole teeth don't push through faster, she's gonna be eating oatmeal and soup. We are signing her up for cheerleader today! G-O Baby Go Go, G-O for Victory! Ah the memories of herkies and huddles, cheer camps and ballgames....

And guess what? I got an email from the lady with a Goldenhar child in AL. I had mentioned her in this article. (Click here to read) Thank you Ms Skala for reaching out to me!

How's that for a bunch of random updates?
a couple of old pictures for your viewing pleasure...

Harriet.

Harriet. Many of you have no idea who she is, I've been blessed to have hundreds of faithful blog readers per day from all over the world, so I wouldn't expect you to know her. That's about to change.

Harriet is a special lady. She doesn't have a hearing impaired child, she doesn't wear cochlear implants. Instead she was blessed with four boys and a great husband. That alone should tell you what a strong amazing women she is. When I think about living years and years with five males, being the only female of the house, it makes me want a bubble bath, a glass of wine and a pedicure...lol.

I met Harriet as a young adult. She opened her lake home up to all us-most of us under the age of 25. I ate her food, I rode in her boat and sat on her peer. I had no idea at the time, I'd have two deaf children, I'd feel like I'm going out of my mind at times, or that some of the best advice would come from a lady named Harriet.

Harriet, at age, um-over 70, still goes to the gym and works out. She is my inspiration! She's lost three of her four boys. One in a car accident, one was killed and one recently passed away with cancer. Her one living son, my friend Dan, has entered her in a contest to receive a new smile. She deserves a smile. Please vote today (they announce the winner tomorrow) and read her incredible story here, she is MOM NUMBER ONE. (CLICK HERE to simply vote #1) Harriet told me a while back when my child carved the word 'Heart' into my new patio furniture that I would one day cherish it...and I knew exactly what she meant. She had no idea she would soon loose another child. She was right though. Every time I look at the carving, I miss the child that is growing up so fast. I miss the child that needed help riding his bike, I miss the child that asked me to brush his hair so he would look COOL.

Here is a sample of what Dan wrote about his mom, Harriet. I'd say she did a really good job with her boys that all loved (s) her so much!

"I really don't think any mother should have to bury one son no less three. I am her only child left. I would really like to see her smile and be happy with her smile. She is a beautiful woman and has taken great care of herself, but she is self conscious of her smile."

Take the Million Ear Challenge

Come on at take the Million Ear Challenge. So many cochlear recipients and parents, family and friends have already stepped up to participate in Cochlear's challenge to reach a million ears during May's Better Hearing and Speech Month. Simply go to the website and post your name and what you'd miss about hearing should you have none tomorrow! CLICK HERE It will give you an option for you to share this info w/your Facebook friends (please do that). This way we can reach more people. Also you can send free Ecards as well, simply click on the Ecard option on the right column.

And Happy Birthday G-Man!! I can't believe that 10 years ago, I was afraid-I was lost-I was worried we'd never even see birthday #1 and here he is...

10

Hearing loss was the least of my concerns at the time-but now, it seems the resources are everywhere I turn. We've been so blessed to have had the support and fantastic medical care over the years...and still blessed for all that we have today...our secluded world we only thought we were in years ago, has proven to be bigger than we ever knew. We have friends in Greece, Italy, Australia, California, Washington, and in every-single-state-in the U.S. (I can not name them all, lol) But we put one foot in front of the other, just as we did 10 years ago. We have just as many appointments as we did 10 years ago. But we are not alone. Thank You!!

Track Day

Gage was so nervous. He jumped over 10 feet at school and was one of the fastest boys in his grade so he qualified to go to TRACK DAY. Once a year area schools get together and have their selected athletes (grades 4-6) compete in events such as tug-of-war, running long jump, relay races and more. He chose to do the running long jump and he also participated in the 440 relay.

He didn't bring home ribbons-most of the ribbons won from our school were by sixth graders, but he had so much fun. He was a nervous wreck having to run down the tunnel of people to perform his running long jump entry. He had two tries and only got about 7 feet or so ? but he did fabulous on the relay. They put him as second 'leg' so he wouldn't have to be the one to LISTEN for the whistle to start. He hopes he qualifies next year because he says he won't be holding anything back next year. He wants a ribbon!

After careful consideration...

We have chosen the education plan that we feel will best suit my daughter. We are fully aware that this may change in the future and at that point we will re-evaluate our situation and make decisions based on her needs (as always).

We were very torn between moving forward with the public school she's unhappy at or switching her to the state Deaf School. We talked to many people...including Brooklyn. We have reached a decision (thank goodness).

Brooklyn's problems seem to be social. Yes a few issues can be pointed to her deafness, but most of all, it's her reactions and interactions with the other kids. Honestly, the kids don't care that she wears implants. It's just part of her. However, if Brook is upset because she doesn't always understand people the first time, removing her and placing her in a school FULL of signing children, would only enhance her frustrations. She is interested in sign. We will get her some Signing Times videos. It's not as if she's missing part of herself by not signing. It appears to be a fun 'hobby' and if she wants to learn an additional language, that's awesome at this point.

We have decided she needs to be more social outside of school. I thought I was doing everyone a favor by skipping b'day parties, skipping church, skipping sports because of my fear she would not behave properly. So, I've taken a loooong look at our behavior-which can seem anti-social to the kids, since we work, and go home. We have decided to enroll her as a cheerleader this year, if she don't change her mind. And we are getting more involved with our community. She and I already had an awesome time volunteering to make first aid bags for storm relief workers last week. There were tons of kids there and she did great! She got a sweet note from a little girl in her class that told her how much she loved her and combined with a strong effort on her part as well....she had an awesome week at school. She had confidence, she felt better, she wanted to go...

And how could I remove her from a place that has taught her this...



I mean-this is FIRST GRADE. She is doing awesome and we are proud to say that we have decided to keep her where she is at. She will learn new coping skills, work on her interaction with others and I do believe she will have a great Second Grade year at her public school. We thank you all for your comments, emails and phone calls that have helped us realize-we could do her more harm than good by removing her from her current school. ((hugs))

We've Reached A Decision

Woohoo! I finally slept last night. As you know the torment of my child's future-education wise-has really been tearing me up inside. Well we have finally reached a decision. I'm waiting to announce which direction we are going til later because I need to time to caption a video and I just don't have time this morning. But at least I can sleep-at least she can sleep-and we all feel comfortable moving forward with education plan that we hope will fit her best. I just wanted you all to know what a key role you have played in our decision. We have spoken to everyone about this (that matters) and we have received A LOT of advice. We have come up with a solution. And I do believe will work best for her. And THAT IS WHAT MATTERS.

So which will it be? Deaf School or Public School?

Torn

Oh my-I have no idea what to do...

I've not slept very well in days, I've almost run out of tears, I am exhausted.

I have a miserable child when it comes to school.

Part of me thinks like this: we are down to our last few days of school, we'll have summer break, and she'll start the new year off on a different note.

The other part says, let her go to the Deaf School. I've always said that Alabama was one of the best places to be if your child has a hearing loss. But when it comes to school, that's not the case. My children academically do fantastic in public school. Gage does great socially. Brook doesn't. She's to the point now where she's miserable. It breaks my heart when she tells me she has only one friend. It breaks my heart to see the other kids scoot away from her at the lunch table. It breaks my heart for her to say, "When I ask the kids to repeat themselves, they throw their hands up and say 'NEVERMIND!!'" She never really started off on the right foot. She's always defensive, even unnecessarily at times and the kids think she's mean. She can be such a sweet little girl. She's very loving, and plays and has fun at home. She does great in her own classroom for the most part. Lunchtime and PE seem to give her misery which is the social part of the day.

She has begged me to send her to a different school, the Deaf school. I am so torn. Gage doesn't want to change. I hate to split the kids up. She would be an hour and a half away while he'd be 10 minutes down the road.

I am so thankful that Alabama now has Alabama School for the Hearing which is taught by AVTs (Auditory Verbal Therapists) I think all she needs is to be around the other kids w/hearing loss. However, it's just growing out of infancy stage and trying to anchor down into becoming a permanent solution for kids with hearing loss. However, that's still an hour and a half away, with no buses running up here and they are more of a preschool, not elementary. If this school were already established, already equipped for elementary, we'd be there in a heartbeat, even if I had to make that drive everyday. Unfortunately, our only option is going to be AIDB (Alabama Institute for the Deaf and Blind) which focuses on both oral and ASL. Brook likes the idea of sign so I have no problem exposing her to that. This is the main stopping point for Gage, he has absolutely no interest.

He is however attending a camp there this summer so we'll see if he changes his mind. I kinda feel like we are heading in that direction...but maybe not just yet. If I could get both kids leaning in the same direction, I'd be a happy camper. So unfortunately, I may need to split them, if we absolutely can't agree. Gage would be fine where he is at, but he can't hear worth a flip these days. He's by no means where he was a few years ago before all of his revisions. I honestly don't think it's a bad idea for him to try the school out just to see, we are never sure if he'll even get to keep his implants. He's only had a few headaches in the last few days so we'll continue to monitor that.

I just need to find a place for my sweet girl.....a place where she'll feel happy and accepted. She would love the class sizes which are about 5 to 1...we'd have to get up very early, ride for 40 minutes to catch a bus which will travel another 40 minutes to the school...which would turn a 7 1/2 hr day into a 10 hr day...that's a lot. And then again, she will do a good deal of maturing over the summer and return to school a second grader. Gage had a really tough time in K and 1st grade too. He blossomed in second and has been happy ever since...I kinda would like for her to attend the camp next year (if she can stand to be away from me for a whole week) and see how she feels then...at the ripe old age of 8.