Kauffman Family Update

Therapy Dogs

2011-11-14T18:57:00.000-05:00

Katie's school brings in therapy dogs once a week to work with the kids in her special education class. Katie has never been a big fan of dogs (or any animal, live or stuffed, for that matter), but she is starting to warm up to the therapy dogs. Her teacher sent me this pic of her petting one of the dogs last week, and she said that Katie likes pushing one of the little dogs down the hall in a stroller. I'd love to have a picture of that! As a dog lover, I just love this program!

Fall Pics

2011-10-22T21:19:00.000-04:00

Katie has been taking hippotherapy on Saturday afternoons again this fall. These pics were taken on a beautiful, sunny fall afternoon a couple of weeks ago. Hard to believe Katie has been riding now for 7 years! She still loves it!!

That Sunday, we went to Bonnybrook Farm. It's only open to the public on weekends in October, so we wanted to be sure to get there while the weather was nice. It's such a beautiful place, and the fall colors were gorgeous that weekend!

Fall 2011 School Picture

2011-09-28T19:28:00.000-04:00

Third Grader

2011-08-26T23:03:00.000-04:00

Katie started back to school this week. Hard to believe my girl is in third grade! Overall, she had a good first week. She was a little hesitant about going to school on Monday, and even seemed a little subdued in the car on the way to school a couple other days, but she did great once she got there.

She has the same interpreter and one-on-one aide as last year. She has a new special ed interventionist, but luckily it is a woman who used to teach at the Early Childhood Center that Katie attended, so she knows Katie and has even worked with her before. Katie has a new regular ed teacher, but the same OT, PT, and speech therapists as last year. It makes it so much easier when you have a lot of the same team members as the previous year. Already dreading the switch to a new school with the start of fourth grade next year--but we won't think about that yet!

You'd think after five full days of school, Katie would be exhausted tonight, but it's 11:00 p.m. and she's still going strong! Wish I had half her energy!

Indiana State Fair

2011-08-20T01:07:00.000-04:00

Katie starts back to school on Monday, the 22nd, so we decided to take a family day this week before school starts and go the Indiana State Fair in Indianapolis. What a nice fair! Katie really enjoyed herself, especially in the livestock barns since she has a love of farm animals right now. We saw cows, horses, sheep, and pigs galore! And food galore, too! Katie loved the fresh-cut fries.

We only stayed a couple hours--usually much longer in a place like this, and Katie will start getting overstimulated, so we've learned to limit our time, which makes for a better day for all of us. We would definitely go back to this fair--it was great!

Many of you have probably heard that there was a terrible accident at this fair last weekend, when a huge gust of wind preceding a thunderstorm caused a concert stage to collapse, killing five people and injuring dozens of others. This last picture shows the memorial they had set up for the victims of this freak and tragic event.

Surgery #10

2011-07-15T21:00:00.003-04:00

Katie had her tenth surgery this past Tuesday. She had her tonsils removed and also had some dental work done while she was sedated.

Her surgery was scheduled for 7:30 a.m. We had to be at the hospital at 6:00 a.m. for pre-op. Katie did really well while waiting, watching her DVD player the entire time. She was finally taken back to surgery around 7:45.

She was in the OR about 90 minutes. Dental went first and took some x-rays, cleaned her teeth, and extracted three baby teeth that hadn't fallen out yet, including her two front teeth. The dentist showed us on the x-rays that Katie is missing her four permanent upper front teeth due to her cleft palate. She will likely need a bridge or implants in a few years, once her mouth has stopped growing.

The ENT then removed her tonsils. He had planned to remove her adenoids as well, but once he got a look at them, he said they were really small and weren't causing any harm, so he left them in. Her tonsils, however, were huge! Hopefully, removing them will lessen the frequent sinus infections and tonsil infections that she gets every spring and fall.

Katie was in recovery a couple of hours. She was pretty knocked out from the anesthesia and slept for quite a while, so the nurse just let her sleep it off. Once she finally woke up, Arlin was able to get a dose of Tylenol in her before we left the hospital.

Katie was pretty lethargic most of Tuesday and napped a couple of times. She wasn't wanting to drink much, but she did take a little liquid by medicine dropper and ate a little soft food in the evening. By Wednesday, though, you would never even know she had surgery! She has shown no signs of pain at all, not ever crying or even whimpering. She started eating more soft foods on Wednesday--pears, soft breakfast bars, chicken salad sandwich, watermelon, green beans--and has done fine with all of them. She was still hesitant to drink from her cup on Wednesday, but started using it a little yesterday and is back to drinking pretty normally today.

We can't believe how well her recovery has gone. She is such a trooper!

Author Tea

2011-05-21T09:54:00.000-04:00

Katie's regular ed class had an "Author's Tea" on Thursday afternoon. Parents were invited to attend, and the kids read books that they had written and illustrated themselves. Katie did such a good job reading her book! She signed it, and a girl from her Circle of Friends narrated. Katie's special ed interventionist said she had practiced it for a couple of weeks now. No one knew how she would do when presenting it in front of a room full of people, though. She did great! Then she sat through all of the other kids' readings, which is remarkable too! Way to go, Katie--we're so proud of you!

Here's a video of her presentation. Turn the volume on your speakers all the way up, because it's hard to hear the little girl who is narrating.

Poppaw's Girl

2011-05-15T16:35:00.001-04:00

Katie and her Poppaw Carpenter are big buddies!

Moments in May: Illness Update

2011-05-07T10:05:00.000-04:00

We got Katie in to see the pediatrician yesterday. Turns out she doesn't have a sinus infection, but she does have a throat/tonsil infection. The doctor said it was one of the worst she's seen. I'm surprised Katie hasn't been in more pain with it--but on the other hand, she's always had a really high pain tolerance, so it's usually very hard to know when something is hurting her.

So, she's on Round #4 of antibiotics now. The doctor put her on a high dosage of Omnicef for 14 days. Hopefully, this will finally kick it. Maybe by the time she's finished taking it, the weather will have improved some too. I'm guessing all this rainy weather we've had the past six weeks hasn't helped the situation much.

We also got an appointment with a ENT who specializes in nasal/sinus problems. It's not until June 4th, but I guess that's really not too bad, considering how long it sometimes takes to get in to see a new doctor. Hopefully he'll have some answers as to why this keeps happening so much.

Moments in May: Sick Again

2011-05-05T06:13:00.000-04:00

This has been the worst spring for sickness that Katie has ever had. She always has sinus and strep troubles in the spring (though she's tested negative for allergies), but this spring has been ridiculous.

Week of March 14: sinus infection
Week of March 28: strep throat and ear infection
Week of April 11: sinus infection
Week of May 2: sinus infection

She's been on three different types of antibiotics, and none of them seem to fully kick this thing. Poor girl was miserable by the time she got home from school yesterday. Took a two-hour nap (which she NEVER does anymore) and had a fever of 102 when she woke up. Guessing she probably won't go to school today.

We're not sure if it's because of the crazy weather we've had here this spring (we've had 21 inches of rain since the first of March and unseasonably low temperatures) or if Katie has something going on with her nasal anatomy, maybe related to her cleft. We're going to try to get her in to see an ENT at Children's who specializes in nasal/sinus issues to see what he thinks.

Summer can't come soon enough here!

Moments in May: Lemonade for Sale

2011-05-02T08:23:00.000-04:00

Katie's class has opened a lemonade stand at school on Fridays. I believe they are raising money for a charity, although I can't remember which one. Apparently, Katie did very well last week in helping to make the lemonade and sell it. I'd love to be a fly on the wall, watching her--I bet she's a riot! :-)

Moments in May

2011-05-01T15:08:00.000-04:00

I don't do a very good job of keeping up with Katie's blog anymore. It seems like we are always busy--with work, school, house, life--that it's hard to make it a priority anymore. And really, we don't often have the "big events" to post about like we used to. Also, I tend to now post a lot of the day-to-day things on Facebook that I normally used to post on the blog.

So I thought, starting in May, that I'd try to write smaller posts more often--just blurbs about day-to-day things going on in our lives that might be interesting to family and friends who aren't on Facebook, little things that we'd probably otherwise forget about over time. I probably still won't get around to posting every day, but I think it will be easier to post more often by taking this approach. And it might be a nice change of pace and format for the blog.

So if you're interested in some of the current happenings with the Kauffman family, check back often this month and see what we're up to!

Spring 2011 School Picture

2011-04-30T14:44:00.000-04:00

Update

2011-02-24T19:12:00.001-05:00

It's been forever since I updated the blog, I know! It just seems that we've settled into so much more of a routine now that there's not as much to report anymore. We really haven't taken many pictures lately, either. It's been a long, cold, snowy winter here, so we've all pretty much been homebodies!

Katie has had a few routine doctor appointments this winter. She went to see her craniofacial surgeon in November. He sees her yearly to check her cleft lip and palate to make sure everything still looks OK. He saw no changes since the previous year--everything still looks good.

In January, she went to the dentist for her six-month check-up. She did really well there--I think this is the first time we didn't have to hold her down for him to look in her mouth. He said her teeth look good--no cavities. However, he said he's probably going to have to pull her two top front teeth if they haven't come out on their own by the next time he sees her. Those teeth are abnormal looking because of her cleft, and they are currently capped. He said we'll probably need to take an x-ray to see if any permanent teeth are in those spots.

Last week, Katie saw her ophthalmologist. She did really well for this appointment, too. Her eyes looked really good--no changes in her prescription since 18 months ago. We are probably going to get new glasses over Spring Break, though, because her current ones are pretty scratched up.

Katie also had an augmentative communication evaluation last month. Since she still doesn't use a lot of expressive sign and also has trouble forming many of the signs because of motor planning issues, they wanted to see if maybe she might benefit from some augmentative communication in addition to her signing, in order to be able to request things and express her feelings more. She caught on quickly to the device they tested her with and seemed to really enjoy using it, so the speech therapist recommended a Dynavox Maestro for her. It will take about five to six months to get it by the time all the referrals, paperwork, and insurance approvals are done, so we'll probably have it by early summer. That will give us some practice with it at home before Katie takes it to school with her in August. We hope she's able to master it quickly and that it gives her more of a voice and some independence in her communication.

Other than that, nothing out of the ordinary has been happening. Katie continues to do well in school and is going to day camp a couple Saturdays a month, which she still enjoys. We're just waiting for spring to arrive so we can get outside and enjoy some warm weather for a change!

Happy Birthday, Katie!

2011-01-19T21:56:00.004-05:00

My baby turned 9 this past Monday. How did that happen?! I can't believe she is 9 already. The years have just flown by. It seems like it was just yesterday that she was a baby.

She had a good birthday. We met Grandma and Grandpa Kauffman and Aunt Twila at McDonald's on Sunday, and then went to visit Nanny and Poppaw Carpenter and Uncle Shay on Monday since Katie was off school for MLK Day.

Yummy decorated cookie from Aunt Twila

Hanging out at McDonald's

(with the trusty DVD player that goes everywhere we go!)

Checking out the new Signing Time videos she got

Gotta have some fries to go with the videos

(The Coke is Dad's, not Katie's!)

Birthday cake that Nanny made

Notice the ASL "9"?

(My Mom obviously didn't pass on her creative genes to me!)

Happy 9th Birthday, Katie! We love you!

Merry Christmas...a few weeks late!

2011-01-15T10:49:00.000-05:00

Merry Christmas, Happy New Year...and Happy MLK Day, since I'm that late posting Christmas pics! I think this is the longest I've ever gone without posting on our blog. The last couple months of 2010 were really busy for me at work, not to mention I'm taking two interpreter training classes at Cincinnati State Community College, so blogging became one of the activities that was temporarily cut while I tried to keep my head above water. Thankfully, work has slowed down some, so maybe I'll be able to keep up with the blog a little more again now. (No promises, though!)

Katie's favorite Christmas gift was books.

She has always loved books, even as a baby!

Hanging out in Grandma Kauffman's kitchen, watching DVDs.

My cute little Mom and my brother, Shay.

(My Mom will kill me for posting this pic!)

Even Shelby got Christmas gifts--

a stuffed frog, a stuffed donkey, and this pink teddy bear.

I think it took less than 5 minutes for the bear to have a hole in it. :-)

Another favorite gift of Katie's was new Signing Time videos and books.

It didn't take her long to figure out that the books matched some of her videos and she could follow along in the book as she watched the DVD.

She is SO observant!

Me and my Dad

Hope everyone had wonderful holidays! After record snowfalls here in December and January, along with weeks of gray, gloomy skies, I personally can't wait for spring to arrive!

Charge It for CHARGE

2010-11-07T15:43:00.001-05:00

Dear Family, Friends, and Professionals,

At this time nine years ago, we were only a couple months away from welcoming our daughter Katie into our lives. Although we knew in advance of her birth that she had a couple medical issues that would need to be addressed, little did we know of the many different diagnoses she would receive within her first few months of life. To learn that your child is profoundly deaf, partially blind, and has a heart defect that will likely require surgery, in the midst of dealing with numerous appointments and surgeries for a cleft lip and palate, was quite a lot to digest and deal with during a time when we just wanted to celebrate the arrival of our long-awaited child.

When Katie was 3 months old, her geneticist put together the pieces of her various medical issues as being part of the key criteria for CHARGE syndrome. Knowing nothing about CHARGE at the time and receiving very little information from our geneticist, we brushed CHARGE off as just an acronym for the distinct issues that Katie was facing. It took us several months and much information to realize that CHARGE was much more than a group of independent diagnoses, but rather an all-encompassing multisensory syndrome that would affect Katie in almost every facet of her life.

Much of the information we learned about CHARGE came from the CHARGE Syndrome Foundation. Their website provides a wealth of information for new parents, medical professionals, and educators. But beyond the information provided, the Foundation has led us to meet some amazing professionals and educators who are dedicated to helping our children lead the best lives they can live. Through the Foundation, we have also met some of the most dedicated and caring parents, and have made lasting friendships with people all over the country and around the world, many of whom we have never met face-to-face.

We hope you will join us in supporting the CHARGE Syndrome Foundation in its third annual Charge It for CHARGE campaign. The money donated will go to support the Foundation’s efforts in further research, development of additional informational resources for families and professionals, and its biennial International CHARGE Syndrome Conference, to be held in July 2011 in Orlando, Florida. Be assured that any amount, large or small, will go to good use and will be appreciated by the Foundation and the families it serves.

Click on the link below to visit our personal web page to make a donation, become a fundraiser or simply to learn more about the Foundation. Your gift will make a difference in the lives of individuals with CHARGE syndrome!

Thank you for your support of the Foundation as well as your love and support for Katie and for us over the past nine years.

Love,

Leslie, Arlin & Katie Kauffman

Click here to help us Charge It for CHARGE!

Fall Fun at School

2010-11-02T20:20:00.000-04:00

Katie's been having a good year at school so far!

Eating a snack at the fall party

Guessing the weight of a pumpkin

It probably felt like 100 pounds!

Playing pumpkin memory

Katie's teacher said she didn't cheat TOO much. :-)

Katie's support class has been having therapy dogs come in for the last couple of weeks. She usually doesn't care much for dogs, but she seems to be liking the therapy dogs. I love this picture of her holding his leash.

Let's go for a walk!

Swimming at camp

Katie's going to camp two Saturdays a month at the place she went to summer camp. She still loves it!

Fall School Pictures

2010-10-26T17:44:00.005-04:00

Katie got her fall school pictures last week. They took two, just in case one didn't turn out, but both were really good! It amazes me how old she looks in these pictures. Although she'll always be my baby, she's definitely not a baby anymore!

Fall Fun

2010-10-02T15:17:00.009-04:00

The temperature has finally dropped here after several weeks of 90 degree weather, and fall is definitely in the air! October is usually a nice month here, so we like to go to some of the area fall festivals on the weekends.

Last Saturday we went to Bonnybrook Farms. Katie had gone there back in May on a field trip with her class. You could tell she remembered being there, especially once we got to the barn where all the animals were. She wanted to go through it again and again, signing all the animals. She is getting very good at identifying animals independently!

Checking out the sheep

Katie insisted on her daddy holding her up to see every horse in the barn...12 of them...about 4 times each!

Having some up-close and personal time with one of the horses

Back to School

2010-09-10T20:12:00.008-04:00

Long time, no update! We've been really busy here with work, Katie going back to school, etc., so I put a self-imposed ban on myself for blogs and facebook until I could get caught back up some. I'm slowing but surely reemerging from the black hole!

Katie started back to school on August 23rd. She is in second grade this year, which means a new school building and all new teachers and therapists. So far, so good! She's done really well with the transition so far and is already learning her way around the new school.

She has a male support educator this year, which is different for Katie--she's never had a male teacher or therapist before. He's great! There are five kids in his classroom, counting Katie. He believes in teaching the kids to do as much for themselves independently as they can. He already has Katie doing things that she never did in first grade last year, like following the end-of-lunchtime routine independently, opening doors for herself, etc. She bounces back and forth between his classroom and a mainstream classroom during the day, with an interpreter and a paraprofessional to assist her.

It still feels a little weird taking her to a new school and seeing all the new faces after being at her old school for the past four years. I think it's taking Arlin and me longer to adjust than it has Katie! Maybe she could teach us a few things about transitioning!

I'll try to update more often now that we're finally getting back in the swing of things around here.

Katie's new school
It's only about 5 minutes from our house, so we take her in the mornings and she rides the bus home (with an aide) in the afternoons. I love seeing her face light up when the bus pulls up and we're waiting for her!

Dressed up for the first day of school
(Outfit courtesy of Nanny Carpenter)

Walking home from the bus on the first day
She loves for me to meet her at the bus and walk home with her. One day last week, I couldn't be there, and she refused to hold hands with Arlin and walk home with him. She made her aide walk home with her instead! She's a hoot sometimes!

Second day of school
Still smiling!

Looking at books in the car on the way to school

Time for School!

2010-08-13T19:16:00.004-04:00

Can you believe it's already time for Katie to go back to school? She actually started part-time this week! She is going Tuesdays, Wednesdays, and Thursdays, for 90 minutes each day, this week and next week to get used to her new school and classroom.

We were a little nervous about how she'd do in a new school--but so far, so good! She seemed a little confused when we got to the school the first day and got out of the van. But then her interpreter, Ms. Wanda, walked out of the building, and Katie's face immediately lit up. She grabbed Wanda's hand, and off they went! I peeked in the classroom at them a few minutes later, and Katie was just staring at Wanda's hands, mesmerized by her signing. It was like she was thinking, "Finally! Someone who really knows how to speak my language again!"

Today was the last day of summer camp for Katie, too. She really did well there all summer. We are so grateful to have such a great camp in our area. I'm not sure what Katie would have done all summer without it!

Katie will start school full-time on August 23rd. Lots to do before then--get some new shoes, buy school supplies, prepare materials for a meeting with Katie's educational team, etc. Let's hope it's another good year for her!

Summer Update

2010-07-25T12:44:00.002-04:00

I've been kind of lazy in updating the blog this summer! Well, actually not lazy--more, just too busy! And we actually haven't had a lot of big news to report, anyway.

Katie has been going to Stepping Stones day camp Monday through Friday from 9:00 until 3:00. She loves it! Every day the kids swim, go boating, take nature walks, do arts and crafts, play on the playground, etc. It's really been a great place for Katie, and her camp leader reports every day that she really enjoys it. She is going to be spoiled when school starts back, wondering why she has to work all day instead of play!

Speaking of school, Katie starts back in just two weeks! Our regular school session here starts on August 23rd, but the special needs students start two weeks earlier. They go Tuesday, Wednesday, and Thursday from 10:30 until 12:00 for those two weeks to get used to the school building, routine, new teachers, etc. I think it's great that they do that for these kids--that will be so helpful to Katie! So she'll start on Tuesday, the 10th. Hard to believe it's time for school again already--it sure has been a fast summer!

Besides camp, we really haven't done all that much this summer. Katie is usually content in the evenings just to stay at home and watch videos and look at books. She enjoys going out and sitting on the patio for awhile in the evenings, so that's been something new for her and relaxing for us!

We got a zoo pass recently, so we tried taking her to the zoo last Sunday. It was a really hot day, even though we got there at 9:30 in the morning, so we only stayed about an hour. For some reason, the zoo just petrifies Katie! We had taken her to the Columbus Zoo on her spring break earlier this year, and her reaction was the same. She doesn't cry while we're there, but she's really clingy and hangs onto our hands for dear life, and she shuffle-steps the whole way around and sometimes will kind of whimper like she's scared. And you practically have to drag her up to look at the animals close up! I'm not sure if the surroundings are just overwhelming to her, or what? We made pictures of some of the animals and took them with us to hopefully make her understand why we were there, but that didn't really seem to help. We'll keep trying and just stay a short amount of time each visit, and see if we can get her to be more comfortable there. I sure would like to know what's going on in her head sometimes and be able to explain things to her!

I doubt we'll take any trips before school starts. We had thought about taking a long weekend and going somewhere like St. Louis, but Katie seems to be content just taking shorter day trips and then being at home for part of the day, so we'll probably do that instead. We really don't have many more open days before school starts, anyway!

I hope everyone is having a great summer! I'll post pics of Katie's first day at school in a couple of weeks!

Happy Fourth!

2010-07-05T16:04:00.008-04:00

Katie is going to Stepping Stones day camp this summer. She goes Monday through Friday from 9:00 a.m. to 3:30 p.m. She loves it! They swim, go boating, take nature walks, play on the playground, do arts and crafts activities, etc. She is going to be spoiled when she goes back to school in August--she'll be wondering why she has to work so much!

This past Friday, the camp had a Fourth of July parade and cookout for all the families. The parade was really cute! Katie didn't want to participate in it, though. It wasn't what she normally does at that scheduled time, so she insisted on sticking with her schedule! She's a hoot! She did join us at the cookout, though, and sat down with us and looked at a book and ate some food. She was ready to leave soon after, though. She's not much on parties and large crowds! We had a fun time, though.

Italianfest

2010-06-14T19:56:00.006-04:00

Yesterday, we went to the Italianfest in Newport, KY, down on the Ohio River right across from downtown Cincinnati. They had booths with samples of food from various Italian restaurants in the area, and as a fun surprise, they also had some carnival rides and game booths. Katie had a good time and even went on a couple of the rides with me!

Katie really liked looking at all the colorful game booths. She even played a couple games with me (popping balloons with darts and racing her daddy with a squirt gun), and she won two stuffed animals!

Katie and Daddy on the banks of the Ohio River, with downtown Cincinnati in the background. (The river was really muddy from all the rain we've had.)

Waiting on Daddy to bring us some yummy cannoli!

Mommy and Katie getting ready to ride the Berry-Go-Round. You should have seen Katie's eyes when it first took off! :-)

Mommy and Katie going down the giant slide. Katie looks a little apprehensive, don't you think? At least she didn't cry! :-)

Open House

2010-06-08T12:04:00.002-04:00

We had an open house a couple Sundays ago to celebrate Katie's graduation from Mason Early Childhood Center and to thank all our friends, family members, educators, and medical professionals who have helped and supported Katie and us through her first five years of school. It was a wonderful day! We had about 45 people here in total. It was so nice getting everyone together in one place. Our house was brimming with love and pride for our amazing girl!

Amy Russo (Ben's mom) made the invitations. She is SO creative and talented!

Amy also did all the decorations. Thanks so much, Amy, for all your help!

We framed all of Katie's school pictures and made a slide show out of all the various snapshots taken of her at school over the past five years. Everyone loved it!

Lots of yummy food! Notice the "Signing Time" cards hanging from the ceiling that Amy also made!

A teacher at Katie's school made the delicious cake. She did a great job in matching the invitation!

Katie and her amazing developmental pediatrician, Dr. Wiley

Katie and her paraprofessional, Patty. The love there is pretty obvious, don't you think?

Katie enjoying her videos with Ms. Wanda (her interpreter) and Ms. Patty (her para)

Below is the slide show of all her various pics from school over the years. It's kind of long (almost 12 minutes), but it's really fun to see how Katie has changed and progressed over the years.

Hard to believe tomorrow is the last day of school! We'll be moving to a new school building and all new people (except Katie's interpreter, who will move with her) for second grade. I'm going to be sad tomorrow to leave our current school. Everyone is like family to us there. What an amazing bunch of people we've been blessed with the past five years!

Make an on-line slideshow at www.OneTrueMedia.com

Trip to Sauder Village

2010-05-25T18:30:00.009-04:00

Weekend before last, we went to visit Grandma & Grandpa Kauffman and Aunt Twila. While we were there, we went out to Sauder Village, a neat pioneer village on the outskirts of Arlin's hometown. Katie really enjoyed it, especially the farm animals and the carriage ride.

Am loving my girlie's new interest in the outdoors!

Field Trip

2010-05-14T17:29:00.007-04:00

Katie's class went on a field trip to Bonnybrook Farms this week. She really enjoyed all the activities, especially looking at all the animals. I love how she's becoming so much more aware of and interested in the world around her!

Track Meet

2010-05-14T17:14:00.010-04:00

Katie's last Special Olympics event of the school year was last Friday. It was a track-and-field event at the University of Cincinnati. She had a great time!

Get ready...

Get set...

GO!

Crossing the finish line!

Passing football with the UC Bearcats

Bearcat mascot leading a cheer

Katie didn't care much for the Bearcat!

"Later"!

Special Olympics Pics

2010-05-02T17:17:00.008-04:00

Katie had another Special Olympics event last week. This one was a motor skills event. They did tabletop bowling, hitting a ball off a tee, and scooterboard races. Katie did really good! Check out the video of her on the scooterboard!

At the end of the event, all the kids got a medal.

We have one more Special Olympics event for this school year coming up this Friday. It's a track-and-field event at the University of Cincinnati. We've heard it's a really fun day! Be sure to check back next weekend for pictures!

Exciting Notes from School

2010-04-29T11:19:00.003-04:00

Katie's intervention specialist at school sent me the following note this morning that I wanted to share:

I have been meaning to e-mail you to let you know about some things here. Katie is just moving right along. She is doing such a great job with the reading program that we are working on, where she listens to a story, I show her a copied page from the book, hand her a set of words. and tell her to "make a sentence" about the picture. She puts them in order, and then I tell her to "read the sentence" (which means she has to sign the sentence as I point to each word.) She is doing this so well, we are now making new ones(AGAIN!:) that are harder books. :) She is also able to read (sign) books, whole books!!!!!!!! Wanda is so excited! :)

Today I started teaching her to "partner read," which is something that the kids do in the general ed class. It is when they read a book together--one person reads one page, and the other person reads the next, etc. We also had Katie start reading her books to her friend in class instead of the peer reading a book to her!!!! And soon, we will have her partner read with them!

Another big thing we are working on with her, that I think I might have mentioned at our last meeting, is teaching her to understand that a response is required when someone asks her a question. Wanda is adding an obvious question mark sign at the end of each sentence. She says that typically in sign, a facial expression is the way to determine a question, but Katie isn't always paying attention to Wanda's face, so we thought the question mark sign at the end may help. Today is the first day that she answered a question for us!!!! This is such an exciting skill for her to learn as it will help with SO many things, like reading comprehension, conversation, requests, choices, etc, etc, etc!!!

Also, we are ready to move on with the touchmath. We are teaching her the numbers 6-9, where the dots are, etc so that she will be ready to add larger numbers very soon! [She can already add numbers 1-5!]

I would love to send a couple of books home with her this weekend for you to read with her, if you would like! :) We are all so excited about all of this! Katie is such an amazing kid! :)

Way to go, Katie!!! We are SO proud of you!!

Great News!

2010-04-12T10:32:00.003-04:00

I am happy to report that, after 8 years of waiting, Katie has been approved for a Medicaid waiver!!!

Although Medicaid is a federally funded program, it is administered at the state government level, and each state's Medicaid process is different. In Ohio, each county is given a number of waivers each year, based on population and need. You are put on a waiting list and slowly inch your way up each year. Adults with special needs take priority for waivers, though, so kids on the list are often bypassed unless they have life-threatening medical needs. So finally, after being on the waiting list for 8 years, we got a call a few weeks ago that Katie had made it to the top of the list! We had to fill out a bunch of paperwork and go through an application process to get formally approved. We were approved, and Katie just got her Medicaid card about a week ago.

This will really be a blessing for us. Medicaid will pay for any medical needs for Katie that our primary medical insurance doesn't cover, including hearing-related appointments, which (ridiculously) our medical insurance has never covered. It will pay for dental bills (we don't have dental insurance), it will pay for diapers (since Katie still isn't potty trained), it will pay for the special needs camp that Katie has been attending on Saturdays and will be attending daily in the summer, and it will provide us with 20 hours of respite a month with a trained provider. We've heard that some of the teachers and aides at Katie's school are Medicaid providers who often work with kids over the summer as part of their respite time, so we need to start checking around and see if we can find someone who might want to work with Katie a few hours a week over the summer.

The waiver will ultimately save us thousands of dollars a year. We're feeling really blessed to finally have it!

She Shoots, She Scores!

2010-03-29T09:17:00.010-04:00

Just in time for March Madness, Katie's class attended a local basketball event for Special Olympics at Xavier University last week. Over 100 kids, ages 8-22, were there. Katie really enjoyed it and did great being away from school for a few hours. Check out MECC''s newest point guard!

Katie even got a brief couple seconds of fame on the local evening news that night! Here's the link to the video ("Special Kids Inspire With Talent"):

http://www.wlwt.com/video/22858647/index.html. If you watch at the 1:09 mark on the video, the cameraman is interviewing the mom of a child in Katie's class. If you look in the background near the woman's head, you'll see Katie (in pink sweats and a white t-shirt) and her interpreter, Wanda, running!

No Oobleck for Me!

2010-03-13T10:36:00.005-05:00

We received the following update and picture from Katie's support educator last week:

This week at school we have all been celebrating Dr. Seuss' birthday. Today in the seahorse class we made, and played with, "Oobleck". This is a really fun substance to play with that feels like a solid when you touch it but then melts in the warmth of your hand, fingertips, etc. The idea comes from the Dr. Seuss book, Bartholomew and the Oobleck. Oobleck is made with cornstarch and water. It is very fun to play with but very messy. Some of us LOVED Oobleck and others were not interested. Katie did not love it but she did try it. As an alternative, we gave her free choice and she chose what she is doing in the picture! :) She is literally standing on her head. :)

Katie had her first autism evaluation last week. Katie's interpreter met us there, and she interpreted for Katie while Katie worked on various activities with the psychologist. Once the activities were finished, Arlin and I then met with the psychologist and answered several more questions. We were there a total of almost 3 hours! Katie did great, too! She got a little impatient about halfway through and asked to leave, but we got her settled back in and she did fine for the remainder of the eval. We go back on March 30 for an eval with a speech and language pathologist.

We had a meeting at school with Katie's educational team this week to go over the results of her triennial review for services. There was really nothing unexpected that came up in the meeting--we just heard from her support educator and therapists on her progress, her current strengths and challenges, and what services are recommended for her to receive for next school year. It was a pretty long meeting since we had so many areas to cover. We could have even run longer if the room wasn't needed for another meeting right after ours. Katie's IEP meeting is coming up on March 23. It's a busy month for meetings and evaluations!

New Classroom for Katie

2010-02-28T19:47:00.023-05:00

I've been trying to get a chance to post about this for a few weeks now, but have been super-busy and just haven't had the time! Anyway, I wanted to let everyone know about the change in classroom placement that Katie started in mid-January.

The week before Christmas break, Katie's educational team approached us about possibly having Katie spend a part of her day in the SCSF (Social Communication School Fundamentals) classroom. As the name suggests, the classroom has a strong focus on social and communication skills as well as academic fundamentals. The program is made up of primarily autistic students and is available in all of the schools in our district, all the way through high school.

It was a hard decision for us to switch Katie to this classroom. We've always known that she has a lot of autistic-like tendencies--severe delays in expressive communication, very limited socialization skills, OCD'ish type behaviors, etc.--and we've even discussed this with her developmental pediatrician and had already made appointments to start an autism evaluation for Katie at Children's Hospital here, but we just really hadn't considered it from an educational standpoint. It was also difficult because we really liked Katie's support educator, who Katie had been with for a year and a half, and we hated to give her up for this move. We were also concerned about how Katie might react to a change in classrooms in the middle of the school year. Unexpected transitions are usually not her strong suit!

But after looking into it further and talking with Katie's educational team, we decided it would be in Katie's best interest to at least try the program for the rest of this school year. The small group atmosphere of the classroom and the emphasis on communication and social skills seemed like things that could really benefit Katie.

I am happy to report that, after a few weeks in the new classroom, Katie is doing great! She made the transition with no problems at all, and she is already making some strides in her communication and social skills. Being in the new program means she is spending less time in the regular mainstream classroom, but that seems to be OK too. I think she is actually benefiting from the small groups and one-on-one interaction that she is getting in her new classroom.

Katie's new support educator in the SCSF classroom is great! She sends us updates and pictures of Katie every week. Here are some of the pics we've received so far:

This is Katie doing independent work in the SCSF classroom. The black piece of paper on her desk holds a schedule of activities that match up with the activities in the bins to her left. She follows the schedule and works through all of the activities on her own. This activity is designed to promote independence.

This is Katie working on a touch-screen monitor. (The picture is a little blurry.) She loves working on the touch-screen! We are looking into getting a touch-screen adapter for our computer at home. There are lots of fun, free softwares on the Internet that you can download for use on a touch-screen monitor. Plus, it even works on regular websites, like Playhouse Disney!

This is Katie and Wanda, her interpreter, making fruit salad. Katie's interpreter and deaf educator are picking 10 new sign words every two weeks for Katie to work on. Then they structure interactive activities around those signs to make them more meaningful for Katie. Her words this week included fruit, banana, orange, grapes, apple, plate, fork, spoon, and knife.

Katie actually ate one of the grapes in her fruit salad!

This pic is from Katie's Valentine's party in her regular classroom. She usually doesn't do that well at class parties--they are usually too overstimulating and overwhelming for her--but she did great at her Valentine's party! She and Miss Wanda are participating in the crawling relay race. You had to carry a stuffed pony on your back and crawl across the room, and then tag the next person on your team. Bless Miss Wanda for all she does for Katie--I bet she is worn out at the end of every week!

Katie's evaluations for school services and her IEP meeting are coming up in March. She will be moving to second grade in the fall, which will mean a new school building and all-new educational team (although we're hoping to keep Miss Wanda!), so this will be an important IEP meeting for us. Considering how well Katie is doing in the SCSF classroom, we are seriously considering placing her in this program in second grade. Her current educational team members are all in agreement that this would be the most appropriate and beneficial placement for her.

Related to Katie's autistic tendencies, she has an evaluation at the Kelly O'Leary Center for Autism Spectrum Disorders at Children's Hospital coming up this Thursday, March 4. She'll have another evaluation there later this month with a speech-language pathologist. Arlin and I had a parent interview there a few weeks ago to start the process. If the questions they asked us were indicative of autism, we don't have any doubt that Katie will likely be diagnosed! It's very hard, though, to get a definitive diagnosis when a child has dual-sensory deficits because those can also cause autistic-like behaviors, so it's sometimes hard to separate the two. But it does seem like, even with her dual-sensory deficits and CHARGE, Katie does exhibit more extreme autistic-like behaviors than a lot of other kids with CHARGE do. And we do know of some kids with CHARGE who also have an autism diagnosis, and Katie is very similar to them in terms of language and social skills delays, OCD'ish behaviors, etc.

So, off we go, down yet another road on this interesting journey in the life of special needs! Wish us luck on our new adventure!

Happy Valentine's Day!

2010-02-13T17:50:00.011-05:00

Valentine's Day
is one of my favorite holidays!
Roses, chocolates, and a reminder to tell all those who are special in our lives how much we love them--what a great way to celebrate!

To Arlin,
my husband and my best friend...

To Katie,
my daily ray of sunshine...

To my Mom, Dad, and brother Shay,
who have always loved and supported me in every way possible...

To my in-laws,
who have always made me feel a part of their family from the first time I met them...

To my extended family
--aunts, uncles, and cousins--who I don't get to see as often as I'd like...

To old friends,
who I'll share a bond with for life...

To newer friends,
who share common interests and fun times...

To my blog sisters,
whose support and deep understanding mean the world to me...

To all the educational and medical professionals,
who love my daughter for who she is and give 110% to make sure she has the best life possible...

Happy Valentine's Day!
♥ I love you all! ♥

Cover Yourself!

2010-02-01T00:35:00.002-05:00

Some of you may remember about a year and a half ago when Katie took issue with anyone who put their hands in their pockets. We playfully dubbed her the "Pocket Police," and she even showed off her skills at Halloween that year.

Well, now she's appointed herself to the Skin Patrol! She doesn't like for her shirt to ride up where her belly or back shows, and she doesn't like for Arlin's or my shirts to ride up like this either. She will quickly pull them down.

Tonight, she and Arlin were at Wal-Mart getting the groceries, and Katie spotted a woman down one of the aisles with her shirt riding up and a couple inches of her back showing. I'm sure I don't have to tell you what happened next! Katie made a beeline straight for the woman! Arlin tried to catch up with her, but he didn't get to her in time, and Katie--with the most serious look on her face--reached up and pulled the woman's shirt down for her!! Arlin was embarrassed half to death! But he said he actually got a good laugh out of it once they were out of earshot of the woman. :-)

Katie, your innocence and straightforward approach to everything really makes me smile sometimes!

Annual Endo Visit

2010-01-29T09:56:00.004-05:00

Katie had her annual check-up with endocrinology yesterday. Her growth continues to improve every year. She has grown 2 inches taller since her visit last February (although I can't remember her exact height now!). And hang onto your hats on this one...she has gained 11 pounds!!! Last February, she weighed 49.5 pounds. Now she weighs 59.5 pounds. No wonder I can't lift her anymore!

The endocrinologist said her growth continues to be very good, especially for a child with CHARGE. She is starting to catch up on the height and especially on the weight charts. They took an x-ray of her hand yesterday to determine her bone age, since we haven't had that checked in a couple of years, but we haven't received the results of that yet.

The endo said everything looked great--we'll just need to monitor that Katie doesn't continue to gain 11 pounds every year with only a 2-inch gain in height, though, or else we're going to have a problem with being overweight instead of underweight. We may have to put a limit on those McDonald's french fries, Miss Katie!

Lots of other news to share about Katie too, related to her Medicaid waiver, school progress, upcoming school and medical evaluations, etc., but I am really busy with work right now and just haven't had time to post on the blog as much as I'd like. I'll try to write some posts over the next week or two and get everyone caught back up with the latest Katie news!

Happy Birthday, Katie!

2010-01-17T16:37:00.004-05:00

Happy 8th Birthday to our sweet Katie today! Hard to believe it's been 8 years already! You continue to amaze us and bless our lives every day.

Katie and her daddy met Grandma and Grandpa Kauffman and Aunt Twila in Wapakoneta, about halfway between our house and theirs, for a quick visit. Katie had an order of fries at McDonald's--always a favorite for her! Mommy has a bug today and isn't feeling well, so she had to stay home. We bought Katie a big decorated chocolate chip cookie (she likes cookies better than cake), but we may have to wait until Mommy is feeling a little better to have our family celebration. More pics to come later this week!

Nothing better on your birthday than McDonald's french fries!

Christmas Celebrations

2010-01-02T01:23:00.014-05:00

Can you believe it's 2010 already? It sure was a fast year! We enjoyed several Christmas celebrations at home and with our families. The Saturday after Thanksgiving, we celebrated with Arlin's family in northern Ohio. This was the first time we had all been together in a couple of years, so it was really nice to spend time with everyone. Katie traveled really well and enjoyed the day.

Grandma and Grandpa Kauffman with all their grandchildren

Family pic

Katie got some fun gifts from her teachers, interpreter, and aide at school.

Looking at new books

Mr. Potato Head
(Katie is learning to recognize and sign the parts of the face.)

Hi Ho Cherry-O game

Then we enjoyed Christmas day at my parent's house in Kentucky. Katie did well again and seemed to show more interest in opening gifts this year.

Opening gifts with Mommy

Excited about opening her gift from Uncle Shay

Happy Monster Band stuffed animals!
Thanks, Uncle Shay!!

We hope everyone had a great Christmas and a Happy New Year! May 2010 bring you lots of happiness and blessings!

Signing Progress

2009-12-20T23:03:00.003-05:00

Katie's comprehension of sign language and how it fits in her environment is really starting to blossom! Here are a few things she did just today:

This morning Katie was playing with a little plastic Tigger figure that she loves to play with, and I pointed to his nose and asked her, "What's this?" She immediately signed "nose" to me! So I pointed to his ears, eyes, and mouth and asked her all of those too, and she signed them all to me and got them all right! I was amazed!! Not only did she understand what I was asking her, but she also generalized all those body parts to an inanimate object!

This evening, we were at Wal-Mart, and she saw a package with Mickey Mouse in a car on it. She went up and looked at it, and I signed "Mickey Mouse" to her, and she pointed to his car and signed "car" to me!!! I about fell over!

Then we walked past a display of socks, and I held up a pair of them and signed "socks" to her, and she pulled up her pants leg and showed me her socks!

Also at home this evening, I fingerspelled "d-o-g" and then signed "dog" to her, and she got up and walked across the room and kicked our dog!! (She doesn't like him!) Arlin and I totally cracked up! Of course, we had to put a stop to that one...but we were still pretty impressed! :-)

Developmental Pediatrician Observation

2009-12-14T05:30:00.002-05:00

Katie's developmental pediatrician came to Katie's school one morning last week to observe Katie and her educational team. She specializes in deaf communication, so it was really good to get her input on some things.

She really likes Katie's interpreter (as do we!) and feels she has a really good handle on Katie and her communication needs.

She did have some concerns about the effectiveness of Katie's expressive communication. She thinks Katie's signs seem apraxic in nature. Apraxia is a problem with motor planning and sequencing. I know of at least one or two other children with CHARGE who have apraxia, so I'm in contact with them to learn more about this and what we might do to help Katie with this. Dr. Wiley also has some resources that she plans to share with Katie's team about fine-motor development as it relates to sign formation.

Katie is going to be trying out a Dynavox--an augmentative communication device that has pictures and will "speak" for you--to help with her expressive language. Dr. Wiley thought this was a great idea. The school has one on loan from Ohio State for two months and started working with Katie on it as of last week. We hope that she'll pick it up quickly and it will give her another avenue for expressing herself. Dr. Wiley thought we might also want to start some private speech therapy, in addition to what Katie gets at school, to focus more on learning how to use the device.

Dr. Wiley had several other observations and suggestions that were right on target for Katie. Arlin and I will be meeting with Katie's educational team on January 5th to discuss her findings. We are so lucky to have such good professional and educational resources for Katie--we feel very blessed!

Signing Progress

2009-12-01T10:02:00.003-05:00

Katie has been making great progress with her signing skills this school year! Her receptive skills continue to flourish, and she is also now starting to use expressive sign more and more every day. It seems like language is starting to click for her, and she's beginning to understand that the signs actually mean something.

Last week, I got this encouraging email from Katie's interpreter:

I think I failed to mention in Katie's communication book today something that I feel was a very big step with her communication. Besides the fact that she made several unprompted requests today regarding her wants, she did something else I want to share with you. Ashley (Katie's support educator) was working on numbers with Katie today. She had lots of numbers in front of Katie as we were working on her receptive skills. Ashley would say a number and I would sign it, and Katie would find the number and pick it up. We have done this activity many, many times. Katie will watch for the sign and often will need it signed again as she is having to watch for both digits. However, today I signed the number (64) and she looked at me and signed back to me "6" with that expression that was saying, "Did you sign 6 (60)?" Of course, she really signed 7, but that is her 6, 7, 8, and 9. I got so excited! I said to Ashley, "She just asked for clarification!!!!" She has many times looked at me for clarification (needing the number signed again), but this was the first time she tried to sign back to me asking for clarification. I think this is great! She really is getting it! This was the first time she has used turn-taking appropriately without being prompted. I hope this makes sense. It is hard to explain in writing, but I think this shows wonderful progress!

We were thrilled at this note! It's so wonderful to see Katie's language starting to develop! We are proud of you, Katie!

Drink Up!

2009-11-20T14:34:00.005-05:00

Guess what Katie wanted to try last weekend? Drinking from a water bottle--and trying Kool-Aid! Katie still drinks from a sippy cup because she has trouble coordinating turning the cup up to her mouth, pouring the liquid in, and swallowing it. A sippy cup allows her to drink independently without spilling a lot and without choking on the liquid. And usually the only thing she will drink is milk. Occasionally, they can get her to drink water at school, but at home she wants only milk.

She saw me get a water bottle full of cherry Kool-Aid from the refrigerator last Friday evening and take a drink, and she suddenly decided she wanted to give it a try too! She did pretty good and was SO excited and proud of herself! It quickly turned into an obsession--I bet she got 50 "drinks" (her drinks were barely small sips) after that! Check out the pics and video of her below.

Mom, that looks good! Can I try it?

So excited!

Thank goodness for Spray 'n Wash!

Birthday Getaway

2009-11-07T21:38:00.009-05:00

Arlin had a big milestone birthday (the half-century mark!) this past week, so he and I went to the Smoky Mountains in Tennessee for a couple days to celebrate. Arlin's sister and parents stayed at our house and took care of Katie for us. We were all kind of nervous about it because Katie had never stayed by herself with them for that long, but she did great! Twila took her to school each day, and her interpreter and aide said she did great at school too.

We enjoyed our trip. The weather was beautiful both days, and although a lot of the leaves had already fallen, the trees were still gorgeous! We rode the tram up into the mountains, went shopping, and had some great Southern cooking (my favorite!). They were having a chili cook-off in downtown Gatlinburg on Wednesday night, so we had fun sampling all the different chilis--and then getting some Ben & Jerry's ice cream to cool our mouths off!

Katie was glad to see us when she got off the bus on Thursday. And we were just a tad bit happy to see her too! :-)

Thanks again, Aunt Twila and Grandma and Grandpa Kauffman, for taking such good care of our girl while we were gone and for giving us the opportunity to get away for a couple days!

Fall School Pic

2009-10-30T22:52:00.005-04:00

Katie's getting the hang of this school picture thing--another great school pic! Can you tell my girlie is liking her French fries lately? Look at those chubby cheeks! :-)

Camp Success!

2009-10-18T13:54:00.004-04:00

Katie had a good time at Stepping Stones camp yesterday! Her group leader said she did well and had a smile on her face the whole time she was there! She liked swimming and walking around outdoors the best--which we figured!

It was so funny to see the look on her face when we picked her up, though. We walked in, and she spotted us, her face lit up like a Christmas tree, she rushed over and grabbed my hand, and out the door we went! I think she was just relieved to see that someone finally came back and got her! :-)

Here are a couple pictures they took of her yesterday. These were the only two they got. I'm guessing they probably have their hands pretty full keeping track of all those kids and don't have a lot of time for photography!

Enjoying a walk outside--it was a beautiful fall day!

We're not sure what she was doing in this picture, but we think it was the pumpkin rolling race!

Katie is going back on Saturday, November 7th. That will be the true test, to see how she reacts when we take her back there. Let's hope she's excited!

Big "Step"

2009-10-17T09:32:00.006-04:00

Guess where my girl is today? Day camp!!

We have a great special needs camp here in Cincinnati called Stepping Stones. We've heard nothing but good things about it and have been wanting to try it out for Katie. They have Saturday day camps two times a month in fall, winter, and spring, so we thought we'd try it out. If Katie enjoys it, it will be something for her to do a few days a week next summer. (In the summer, they have camp every day--you can go as many days as you want.)

They have really fun programs set up for the kids to keep them busy and on a structured routine while they're there. Today's program is Halloween-themed:

9:30-10:00 - Free play in the gym (They have mats, scooters, balls, etc.)
10:00-10:30 - Swim (They have an Olympic-size indoor pool, with zero entry and 89-degree water!)
10:30-11:00 - Arts & crafts (Make Halloween costumes.)
11:00-11:30 - Picnic lunch (Katie packed a peanut butter sandwich, tortilla chips, cookie, and milk. Not sure if she'll eat in a strange place or not, though!)
11:30-12:00 - Pumpkin rolling race
12:00-12:30 - Bones bingo
12:30-1:00 - Arts & crafts (Make ghosts.)
1:00-1:30 - Spooky kickball
1:30-2:00 - Trick or treating (They're going to go around to see the workers in the offices, barn, nurse's station, etc. at the camp.)
2:00-2:45 - Playground

Katie will be in a group with six other 5- to 7-year-olds. She'll have a group leader, and each child will be matched up with a one-on-one aide. The aides today are a group of volunteers from Xavier University's special ed program. They don't have anyone fluent in sign language to be with Katie, but they do know some minimal signing, so hopefully it will be enough to get her through the day. We sent her PECS pictures from school so she'd have some familiarity with those, and also sent a sign dictionary.

I'm excited for her--it's such a huge move to more independence! But, of course, my mamaheart is a little nervous too, seeing my girl go off to a strange place for the day, with all new people, and not being able to explain it all to her or for her to be able to tell us what she did there or how it went. I sent our camera along, so hopefully they'll take some pictures of her so we can see how her day went.

I'll post an update later this weekend, with hopefully some pictures!

Random Happenings

2009-10-10T13:02:00.004-04:00

Not much excitement going on in the Kauffman household lately--which I guess is always a good thing!

Katie and I have both had our annual "Welcome to Fall in the Midwest" sinus infections this week. The cough has been the worst part. Katie's hasn't been too bad--she's slept well at night, despite coughing a lot, and has been able to go to school. I, on the other hand, haven't been so lucky! My cough has been so bad, I've hardly been able to sleep at all. Thursday night, I never even went to sleep! Ugh. The antibiotics finally feel like they're starting to kick in, and I slept pretty decently last night, so maybe things will be all cleared up in a few more days. Gotta love the fall in Cincinnati!

Katie started the fall session of hippotherapy this morning. CTRH has their new indoor riding facility open now, so the kids were able to ride indoors since the outdoor ring was muddy from all the rain we've had. The indoor ring is heated now, which makes it really nice for the kids and the volunteers--and the horses! Katie enjoyed riding and, as usual, signed "more, more" when they stopped! I think she would ride all day if they'd let her!

We may go to the Sauerkraut Festival tomorrow in Waynesville and walk around a little while if Katie and I are feeling up to it. It's finally supposed to be a nice, sunny fall day here tomorrow. We'll be glad to see the sun again!

Family Outing

2009-09-27T14:14:00.026-04:00

For a lot families, a fun outing might consist of a trip to the zoo or local children's museum, or an afternoon at the movies. For us, it was a quick haircut and lunch. But considering how well it went, we were thrilled!

First we headed over to Cookie Cutters, a hair salon near us that caters only to kids. Usually, my mom's beautician cuts Katie's hair. But she lives two hours away, and since we have school pictures coming up this week and weren't able to make the trip to KY for a haircut, we decided to try out Cookie Cutters. They did a good job! We were in and out in about 15 minutes. They have a TV and DVD player at each station, so we brought one of Katie's DVDs with us and popped it in--and she did great! The haircut probably isn't as precise as when Penny cuts it, but it's definitely better than the "sheepdog" look for Katie's picture! :-)

Afterwards, we swung through the drive-thru at McDonald's and picked up Katie's favorite meal--chicken strips and french fries. Then we went next door to Qdoba for one of Mommy and Daddy's favorite meals--nachos and quesadillas! This was the first time we'd been out to eat together as a family for ages! Katie used to love to go to restaurants. From the time she was about 6 months old until she was about 4, we'd go out to eat with her all the time. It was always a fun way to get out of the house for awhile and do something "normal" in between all the doctor appointments and therapies. But then Katie hit that age where her patience level and desire to be on the move made it impossible to enjoy a meal out with her, so our restaurant days ended (except for take-out!). But now that Katie has gotten a little older and needs activities to keep her busy on the weekends, we thought we'd start trying to occasionally eat out again. Our first attempt went great! We took Katie's DVD player in with us to keep her occupied, and she did fine. Arlin and I didn't even have to gobble our food down like we were on a time clock! It felt so good just to do something that most other families would see as so "typical." Looks like we'll be hitting some more of our local restaurants in the coming weekends!

The Three Necessities of a Fun Meal Out

1. DVD Player

(Note how Katie watches it upside down. Not sure what that is all about!)

2. A Big Plate of McDonald's French Fries

3. Sharing a Booth with Mommy!

Neurology Appointment

2009-09-14T09:53:00.004-04:00

We had an appointment with a new neurologist this past Friday. Katie's pediatrician had recommended him because he specializes in tics and PANDAS.

It was an OK appointment, but I really didn't feel like we learned anything new. He really didn't tell us anything about Katie's tics--what causes them, what might make them escalate, etc. Honestly, I really didn't even feel like he acknowledged them that much. He did recommend a couple types of medications that might help relieve them some if they get to the point where they are interfering with her everyday activities, but for now we're going to try steering clear of putting her on any other medications.

He really didn't have any ideas about what could be causing those crying episodes that she had so bad over the summer. He said he really doesn't like to talk in terms of "seizure-like" symptoms--in his opinion, you either have seizures or you don't, and if an EEG doesn't show that you have seizures, then it's probably behavioral. This the same thing we heard from the head of neurology at the Cleveland Clinic when Katie had a 48-hour EEG there three years ago. Personally, I think it's a bunch of crap, and it really angers me when a doctor is that narrow-minded.

Katie just had another one of these episodes last night. She was doing just fine, and then got in the bathtub, and it started up. Within seconds, she was grabbing her face, screaming bloody murder, her lips were turning blue, and she had a terrible rash around her nose, mouth, and right eye. This continued on and off for most of the rest of the evening until she went to bed. Yeah, she's really choosing to do that--I'm sure she's just acting out for the attention. Whatever.

If I sound like I've about had it with neurologists, you're right--I have.

CHARGE Accounts

2009-09-10T09:45:00.003-04:00

CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter, is now online. If you'd like to read the most recent issue, click here. It contains summaries of all the CHARGE conference workshops and lots of pictures from the conference. Sadly, we didn't make it to the conference this year, but maybe we'll get there in 2011. It's in Orlando!

Back to School

2009-08-29T07:48:00.007-04:00

We're finally back to school! Katie started back to school full-time on Thursday. She had a great couple of first days! I think she was really glad to be back into a familiar, structured routine.

Here are some notes from her interpreter from her first day:

Katie enjoyed being back at school! She really watched me sign a lot today! She sat by Patty (her aide) and I sat in front and signed. This worked really well. This morning she sat with the class in the circle for a long time. This afternoon she was very tired and wasn't able to sit as long as the class. We stayed in Mrs. Shearer's room (mainstream classroom) except for 2 motor room breaks, her lunchtime, and our lunchtime. We worked on all familiar activities. At lunch, Katie ate all of her chicken, potatoes, and cookie in the lunchroom. She did an awesome job!

And here are some notes from her second day:

Katie had another good day! However, she acted very tired in the afternoon. At lunchtime, we bought milk. She drank very little, but she signed every coin to the lunchroom lady. :-) We worked on EVERYTHING! We did math, sight words, sorting, money, shapes, reading, and coloring. She was a real trooper!

You could tell these first two days wore Katie out, though. She slept 11 hours last night, which is totally unheard of for her, and Arlin finally had to get her up this morning! I'd say she'll really be pooped after 5 days next week!

Thank goodness for school! We survived the summer!!

Early School Preview

2009-08-20T13:26:00.002-04:00

Today was Katie's last day of summer school. All the other sessions of summer school up to this point have been held in one of the second/third-grade buildings here. But today, Ashley (Katie's support educator) had Katie come to her regular school for class instead. Katie was SOOO thrilled to be there!

Ashley said Katie made a beeline down the hall and headed straight into her homeroom teacher's room. When she saw no one was there, she headed back out and made a beeline for the library. She wasn't a happy camper when she got there and the door was locked and the lights were out! Ashley finally got her to come back to her room and do some of her activities, but she said Katie wasn't too happy about it--she wanted to go walking through the school! When Arlin picked her up, he said Katie and Ashley were out roaming the halls, and Katie looked so happy to be there!

As they were leaving, they ran into Miss Stephanie, Katie's former preschool teacher, out in the parking lot, and Katie tried to get Stephanie to take her back into the building or to the playground. Arlin said she didn't want to leave at all. She will be SOOO happy to be back in school next week, I'm sure! Only one more week now...

Just a-Swingin'

2009-08-16T10:56:00.005-04:00

Look who's graduated from the bucket swings to the big-girl swings! And she's doing GREAT on them!
She'll sometimes sign "swing" as early as 7:00 a.m.--oh, my! :-)

Plastic Surgery Appointment

2009-08-13T08:53:00.002-04:00

Katie had her yearly follow-up with her plastic surgeon on Tuesday. No, she isn't getting a facelift or Botox yet--this was for her cleft lip and palate! :-)

He said her lip and palate look good. He had initially been thinking he might do a little smoothing out of her lip at some point to see if he could lessen some of the scarring, but it sounds like he is leaning against this now. He is afraid it will actually scar up worse if he goes back in at this point.

Katie will be approaching the age in the next year or two where we may want to close up the openings in her top front gums left by her cleft and put in an artificial bridge for her top four teeth. Her two front teeth right now are smaller than normal and are capped, and the teeth on either side of those are permanently missing. Her plastic surgeon would be the one to do this, in conjunction with her dentist, but the surgeon isn't sure yet whether this is the best route to take for her. Closing the gums involves a bone graft from the hip, and he said the recovery in the hip area can be slow and painful. The other option would be to just go in and close up the two holes in her gum area so she doesn't get food up her nose. Given that she can't move her upper lip enough to see her upper teeth anyway, you probably wouldn't be able to tell that she's missing two teeth, and there's a possibility that her other teeth may fill in those gaps pretty well anyway when her permanent teeth come in. We will have to discuss all this with Katie's dentist the next time we see him and go from there.

Developmental Pediatrician Appointment

2009-08-06T08:15:00.002-04:00

Yesterday afternoon we had an appointment with Katie's developmental pediatrician. I've said it a hundred times, and I'll say it again--we love her! We could talk to her forever! She met with us for an hour and 15 minutes, and we could have talked much longer.

She is going to keep Katie on her anti-anxiety med (Abilify) for now, at least until school starts back full-time and we can see if the more structured routine helps ease Katie's anxiety levels some. Katie is still on a very low dosage, but it does seem to be helping some. She's still having crying episodes occasionally, but she's also had a few days lately here and there where she's managed to get through the whole day with no meltdowns.

Katie's doctor is referring us for some autism and psychology testing. This was something at the top of our list to talk to her about yesterday, because the gap seems to be widening in Katie's expressive language delays and her interactions with her environment and people outside her close circle (namely, just me, Arlin, and her educational team). Although we and Katie's doctor aren't sure she really has autism in the true sense since she has so many other factors going on, we do think there are some major language processing and socialization delays that need acknowledged and addressed. So we'll be scheduling those tests for sometime this fall.

Katie's doctor plans to come to Katie's school sometime this fall and observe her. She hasn't observed her in the classroom for several years, and we think it would be beneficial for her to see her in that environment again as she'll likely have a lot of good perspective and input on the communication and socialization delays. So we'll be scheduling that soon too.

Only three more weeks until school starts--yay!

Perkins Webcast

2009-07-30T10:59:00.003-04:00

Perkins School for the Blind in Boston has published a new webcast about CHARGE Syndrome on their site. Click here to watch it. It is a great overview of CHARGE--very informative! It's given by Pam Ryan, the school psychologist at Perkins, and one of our favorite CHARGE professionals. We met Pam when we took Katie to Perkins for an evaluation in 2006. Katie's teachers and support educators all credit that trip to Perkins and the thorough evaluation report and suggestions we received as being the key to understanding how to successfully educate Katie. They have an amazing program there!

Summer Fun

2009-07-22T09:50:00.007-04:00

Katie has been taking hippotherapy again this summer--and loves it just like always! We are now on our second session. We go on Monday evenings. We only have one more night to go, and then we will be done until fall. We are sorry it is over so soon! Katie didn't want to get off the horse this past Monday. She kept signing "more" over and over!

Katie is also taking aquatic therapy on Tuesday afternoons. She took this last summer and is really enjoying it again. The therapy is with a PT at a local rehab hospital. The pool is really nice there--the floor raises up and down, and the water is SO warm! Katie is doing good using a swim belt. She is starting to learn to kick a little. She's also starting to put her face and head in the water some.

Summer school is going great so far! Katie's support educator said she got a little fussy toward the end of the first session, but when Arlin took her back for the second session yesterday, he said Katie got all excited as soon as they turned on the street to go back to the school, and she had a huge smile on her face when her support educator came out to get her. I'm sure she has been missing school SO much this summer! Only five more weeks until we're back in school full-time!

More Things Ruled Out

2009-07-19T10:23:00.002-04:00

Katie had a series of allergy tests this past week. This is something we've been meaning to do for a long time since she gets so many sinus infections during the year. Remarkably, though, all the tests came back negative. She's not allergic to anything, including grass, leaves, and ragweed. Amazing! I was sure we'd see a link to seasonal allergies with her.

As a side note, can you believe one of the things they test for is cockroaches?? Ew!! I mean, I know I don't get to clean my house near as much as I used to, but that's nasty to even think about!

Katie also saw her dentist last week. He said that her bottom back right molar is coming in, so that may be causing her some pain. It's just cut through the skin, so it still has a ways to go before it's all the way in. So we may have been seeing some pain reaction to that the past few weeks, though it's likely not the main culprit of her crying episodes.

Katie does seem to be doing a little better now that she's been on anti-anxiety meds for a few weeks. We raised her dosage slightly last week, so we'll see if that helps more. She still continues to have unexplainable crying episodes about once or twice a day. They really do seem to be accompanied by anxiety, but we can't tell what brings it on. Overall, though, things are much better than they were a few weeks ago.

Katie starts summer school tomorrow. It's only 45 minutes a day, 4 days a week, but it's one-on-one with her support educator from first grade, so I think it will be a nice activity for her. We need to give a big "Thanks!" too, to Katie's kindergarten support educator and aide. They read about Katie's rough summer on her blog, and they offered to start working with her a couple hours a week to give her a change of scenery and us a couple hours to ourselves. Katie visited them this past Wednesday morning and did GREAT with them! They played with all kinds of school activities--puzzles, numbers, etc.--and took a long walk outside. They said Katie had a ball and didn't cry one time! Maybe she just finds the endless hours at home with me and Arlin totally boring! :-)

Wouldn't you know it, though, just in time for summer school starting, Katie has the start of a sinus infection. It started yesterday afternoon. Our weather here has been really weird the last couple of weeks. The high was only in the mid-60s yesterday. And we've had several days where the high temperature has been the lowest it's ever been in history. So we think the change in weather and the cool air brought on the sinus infection. Figures! Poor Katie can't catch a break this summer, it seems!

ENT Follow-Up

2009-07-07T17:10:00.004-04:00

We had a follow-up appointment with Katie's ENT doctor this morning to look at the CT scans of her sinuses that were taken last week. He showed us all the scans he took. All of her sinus cavities looked really clear. He was actually pretty amazed that her sinus anatomy looked as good as it does, considering how severe her cleft palate was when she was born.

The only shot that he thought looked a little "gray" (unclear) was her lower sinus cavity on the right, down near the bottom of it where it meets the roots of her teeth. It didn't look wide open like all the other shots looked, but he couldn't tell if there was a problem there or if the scan just didn't come out clear from the angle it was taken at. He wants us to check with Katie's dentist and maybe have him take some x-rays of that area to see if he might see any dental problems. We have a dentist appointment next Tuesday, so it's good timing to get that done.

Katie seems to be doing a lot better since she started on anti-anxiety medication about 10 days ago. She's still having an occasional meltdown, but nothing like she was having a few weeks ago. You can almost feel the tension and anxiety building up in her body too, when she's getting ready to have a crying episode--so maybe a big piece of it is anxiety related.

I'm hoping to post some pictures later this week of us doing some fun summer activities, like swimming and hippotherapy. We need to get back to some fun around here!

Results Are Back

2009-07-03T13:37:00.004-04:00

The results to both of Katie's blood tests came back yesterday afternoon (one of them was a little early). She tested negative for PANDAS. One test was completely negative, and the other showed just slightly elevated levels of strep antibodies, but not enough that it should be causing her any problems.

Katie also had a CT of her sinuses yesterday. She actually made it through the test without sedation--woo hoo! They had a DVD player in the CT room with a screen that they could pull close to her, so they put a video in for her and wedged her head in pretty good so she couldn't move it a lot, and she did fine! We were so glad--it made for a much shorter, less stressful morning there, and Katie was able to avoid another sedation. The results are already back on the scan, and everything looks fine with her sinuses.

So, on the bright side, we ruled out a few things, but on the flip side, we still really have no answers as to what is going on with Katie right now. She's improved somewhat since she started on a low dosage of an anti-anxiety med about a week ago, but she's still showing signs of high anxiety and OCD throughout the day and still having those crying spells off and on, although not as bad as they were a couple weeks ago.

She has a dental checkup, a vision checkup, and some allergy testing coming up in the next couple of weeks, so we'll see if anything shows up there. I'm really not expecting it to, though. We still feel like this is something neurological, and we also still wonder if it wasn't triggered by the strep and viral infections Katie had in April. It just seems like she's been a different child ever since she got over those infections. We can't get an appointment with her regular neurologist until October 29, so we're considering seeing if we can get in to see a different neurologist earlier than that. Katie's pediatrician gave us the name of a neurologist at Children's who specializes in things like PANDAS and other neurological problems related to illnesses and infections. That will probably be our next step.

No Results Yet

2009-07-01T13:57:00.002-04:00

Katie had her blood test on Monday morning to check for PANDAS, but we still don't have the results yet. Her pediatrician said we would have the results of one of the tests Monday afternoon and the other on Tuesday. When we hadn't heard anything by yesterday afternoon, Arlin called the lab and found out from them that the one test takes 48 hours for results (so we should get that one today), but the other one takes a week! Ugh. Guess we'll continue to wait.

Katie has a CT scan of her sinuses tomorrow morning. We're not really expecting them to find anything with that, but her ENT wanted to do it just as a precautionary measure, to make sure he wasn't missing something.

So far today, Katie has had the best day she's had in weeks. She's been on a low dosage of an anti-anxiety medication for 6 days now, so we may be seeing it start to kick in. It was good to see her a little happier and more focused this morning!

Quick PANDAS Update

2009-06-27T11:23:00.002-04:00

The mom on the CHARGE list whose son is believed to have PANDAS got back to me. He did test positively for elevated titers, which are the antibodies that your body produces after a strep infection. He is on a regiment of preventative penicillin to bring his antibodies levels down. His symptoms seem to improve as long as he is on the penicillin, but seem to escalate when he goes off it. He also takes an anti-anxiety med, but it has been trial-and-error to find the right one.

We already heard back from Katie's developmental pediatrician via email. She thought it was funny that we brought this up because she was actually wondering the same thing! She directed us to have a blood test done to check Katie's titers levels, so we have that scheduled for Monday morning at 10:30. Elevated titers levels don't necessarily mean a child has PANDAS--many kids have elevated levels--but if the levels are elevated and accompanied by the key PANDAS symptoms, then it's a good indication that PANDAS could be the culprit.

Not that we really want Katie to be diagnosed with this, because it sounds like it's a long-term recurring thing without any good treatment options, but it sure would explain what's going on with her right now--and possibly even explain these types of episodes that she's had in years past, but not to the degree that she's experiencing now. I'll post again once we get the blood test results.

PANDAS?

2009-06-26T13:18:00.003-04:00

Katie continues to struggle with her crying episodes and anxiety/OCD-like behaviors. Wednesday wasn't too bad--only one really bad episode for about an hour in the afternoon--but yesterday was her worst day yet. She was just a mess.

In researching more and looking back through the CHARGE Syndrome listserv archives, I am now wondering if she might have something called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). PANDAS is a sudden, severe onset of hyperactivity, anxiety/OCD behaviors, and separation anxiety brought on by a strep infection. Click here to read more about it.

When I read the description, Katie has almost every symptom. Katie had a strep infection the last week of March, followed by a mono-like virus that lasted about three weeks in April. These symptoms she's experiencing now started up at the end of April, gradually at first, then got a little worse in May, and then really hit full-force in June. Hmm...

From what I've read so far, the only treatment is anti-anxiety meds and/or behavioral therapy. But although anti-anxiety meds seem to help, it's thought that the improvement in symptoms that's often attributed to them really would occur either way, because the symptoms of PANDAS happen in cycles, gradually disappearing until the next strep infection occurs.

I have a message out to the CHARGE list to see if anyone else has had experience with this and if they've found anything that helped their child. I found at least one mom in the archives whose son had been diagnosed with PANDAS last year. His strep infection was in January, and his behaviors were still out of control in July! Oh my. I've also emailed Katie's developmental pediatrician to see if she might have any experience with PANDAS. She is out of the office until next week, so we'll see what she says.

If anyone reading Katie's blog has any experience with PANDAS, please let me know.

Katie Update

2009-06-23T15:13:00.002-04:00

Thanks for everyone's kind words and support since our last post. The crying spells continue off and on daily. But the more we've observed them the past couple of days, the more they seem to have an anxiety component to them. I do believe there's some type of pain component that triggers them sometimes, but maybe only 20% of the time, at least lately. The others are more anxiety-based, accompanied by frustration, OCD behaviors, and sometimes anger and aggression. You can clearly tell the difference in them by Katie's cries and behaviors.

This morning, for example, as soon as Katie got up, she started walking in a circle through our house. We've noticed her doing this some for the past couple of days. She was definitely on a mission--walking fast and with purpose, and not paying attention to anything else. After doing this a few times, then the crying started. Then she'd stop crying, and the walking would start again. Same cycle, over and over and over. Arlin tried to break the pattern but couldn't. Then eventually, she calmed down, just like that, and came over and sat down in front of the TV and drank some milk. And she was fine for the rest of the morning. If like other days, we'll see more of the crying later today, but maybe in a different setting or situation, but likely accompanied by some type of ritual or being denied something she really wants to do or being redirected from some type of unwanted behavior. It will last for a few minutes, or maybe even hours, and then she'll snap out of it and be fine again for awhile.

I would say that this could have been brought on by the change in schedule, with school being out for the summer, but we were seeing these crying spells and some similar behavior issues even before school was out. In fact, the school had to call us a few times in May due to this. But I do think the change in schedule and the lack of constant structure probably hasn't helped, and has likely made things even worse. One lesson learned for sure for next summer: Katie needs some type of scheduled activities on a daily basis during the summer, either a special needs day camp or possibly the summer program at Perkins.

We saw Katie's ENT yesterday, and he wants to do a CT scan of her sinuses next week, just to make sure there's nothing going on there that might be triggering pain or discomfort. It's scheduled for next Thursday, July 2. Katie will have to be sedated for it since you have to be perfectly still during the scan. He also mentioned the possibility of an MRI once we've ruled out other things, to take a look at her cranial nerves to see if those might be a source of pain or abnormality for her. He would have to remove her cochlear implant magnet to do this, but it sounds like a fairly simple and quick procedure--under sedation in the OR, but outpatient. We'll try to rule out some other things, though, before we go that route.

We are going to try cranial sacral therapy (basically, a type of holistic head massage) to see if that might help any. Katie did CST when she was a lot younger, but that was mostly for balance issues. Still, we know of some children with CHARGE who've had good luck with CST, so it's worth a shot. It looks like we may be able to start that in about two weeks.

We are also trying to get a joint appointment with Katie's developmental pediatrician and neurologist to see if we should continue treating for nerve pain or if we'd be better off trying to treat the anxiety/OCD issues. The problem is, the earliest we can get an appointment is August 5, and that was even with pulling some strings. Arlin is going to try emailing the developmental pediatrician to see if she can override this and slide us in sooner. And if not, she has been very good about communicating with us by email over the past couple of weeks, so I'm sure she'll address our questions and concerns quickly, whether we get to see her in person right away or not.

What a roller coaster ride these past few weeks have been. I absolutely HATE the neurological/behavioral component of CHARGE. It is all so fuzzy, and everyone really is just playing a guessing game, especially when you have a child who can't tell you what they're feeling. I don't do well with "fuzziness" either, especially when I'm stressed!

I'll keep everyone posted if anything changes and as we (hopefully) learn more. In the meantime, thanks again for everyone's support. You all are the best!

Crying Episodes Are Back

2009-06-19T21:32:00.004-04:00

I feel like I haven't kept up on Katie's blog lately. In fact, I feel like I haven't kept up with ANYTHING lately! Work, housework, spending time with Katie, spending time with Arlin--there never seems to be enough time in the day anymore to get it all done.

Katie has been having those really bad crying episodes again like she's had at times in the past. For those of you who haven't followed Katie's blog in past years, Katie has had these horrible episodes at various times in the past several years where she will literally scream and cry off and on all day. At first, we thought she was having some type of seizure, as she often grabs her forehead or face when she's having these. We had a 24-hour "walking" EEG at home a few years ago, followed up by a 48-hour video EEG at the Cleveland Clinic in March 2007. Both of these EEGs showed that Katie has fairly constant epileptic-type spikes in her brain, but not true seizures. We had her on seizure medicine between the two EEGs, but since the symptoms continued while she was on it and the EEGs didn't show any true seizures, we took her off it.

The next speculation was maybe that Katie was having bad bouts of uncontrollable anxiety. But we tried her on a couple different types of anti-anxiety meds, and these never seemed to help either. In fact, one of them seemed to make it worse. So we stopped those.

The theory then moved to perhaps she was having some type of pain episode, possibly with her trigeminal (facial) nerve. She sometimes gets a really bad rash on her face, around her nose and lips, when she has these episodes, and her neurologist said that is often indicative of nerve pain. We tried a pain med for awhile, though, and it really didn't make a difference either.

These episodes come and go. At first, they were mostly happening in the winter months, so we thought there was maybe some connection with the cold weather and lack of sunlight. But we got through this winter without having many of these episodes, only to have them come back with a vengeance this spring. They started back up in late April, and they've now escalated to happening every day. Again, the neurologist is still thinking it's some type of nerve pain (it is sometimes relieved, at least temporarily, with just a dose of Advil), so he's trying her on a different med. She just started on it this week, so it will take at least a couple weeks to see if we notice any improvement.

I can't even begin to tell you how draining and heartbreaking these episodes are for all of us. We get up every morning, just wondering when they are going to hit. We literally can't do anything with Katie without the fear of her going into screaming mode. She will be just fine, and the next minute she is screaming uncontrollably--and this sometimes lasts for hours. It can happen at home, in the car, at the park, in the store, and all without warning. It takes away her ability to enjoy her day, and it takes away our ability to enjoy her. Of all the challenges she deals with--deafness, vision impairment, balance issues, etc.--this one BY FAR is the most incapacitating. And no one has any answers, because she can't tell us what's wrong and the doctors are all just guessing. It is SOOO frustrating.

I have to say that, in all of our 7 1/2 years with Katie, things lately have been the most challenging for us than they've ever been. We don't have a lot of structured activities that Katie can do in the summer, so she is already getting bored at home--and on top of that, these crying episodes are taking away any enjoyment of the day that she might have. My work has been out-of-control busy lately, so Arlin watches Katie pretty much all day, every day (even on weekends), with the exception of maybe a couple hours a day. So he bears the bulk of the stress dealing with these crying episodes, and I stay constantly stressed and upset because I'm not available to help as much as I'd like and I'm tired of watching Katie go through this year-upon-year with no relief and no answers.

I feel like our lives are SO out of balance right now. I couldn't tell you the last time I've cleaned the house, spent time with Arlin outside of having constant conversations about these episodes with Katie, spent time with my parents, spent time with Arlin's parents, done something mindless like watch TV...those things just don't exist in our world right now. And sometimes I feel like if we don't get to the bottom of these crying episodes and find ways to balance our lives better, they never will. These episodes now consume our days, every day. Between those and my work, I feel drained, both physically and mentally. And I worry what will become of Katie if these episodes continue with no relief. She gets no enjoyment out of her days, and she certainly can't function at school if these are still continuing in August.

I'm tired, I'm frustrated, and I just want some relief--for all of us.

School's Out for Summer!

2009-06-13T18:04:00.009-04:00

Playing with bubbles with Miss Ashley at the end-of-year party

Writing on the windows with window markers (Those things are cool!)

Eating (or more like being force-fed!) ice cream :-)

With Mommy before the last day of school

Strutting down the street after getting off the bus

Mommy, you are SO silly!

Huge Accomplishment!

2009-06-08T13:04:00.002-04:00

I was getting Katie dressed for her last day of school this morning, and she signed "potty" to me. I took her to the bathroom, sat her on the commode, and she peed right away! Woo-hoo!!! We have been working on potty training with her off and on for several years now. Is it finally clicking for her? Wouldn't that be a great thing to accomplish this summer!

I'll have some pics of Katie's end-of-year school party to post later this week. Arlin's computer crashed last week, and he's my "keeper of the pictures," so I won't be able to post them until he gets his computer back. Hard to believe another year of school is over already!

No News Is Good News

2009-05-30T09:25:00.002-04:00

Sorry I haven't updated Katie's blog recently. I think this is the longest I've ever gone with updating it! We have been so busy lately with school, work, house and yard work, etc., that I haven't had a chance to write anything. And actually, we really haven't had a lot of "newsworthy" stuff happening lately!

Katie has 6 more days of school left. Her end-of-year class party is this coming Thursday afternoon, although her last day isn't until the following Monday, June 8. She is still doing well in school. We've had a few more blips lately where she's wanted to leave early, but other than that, she's been doing great. Her expressive signing has really been taking off lately! She will now sign "put on shoes," "socks," "milk," "eat," and "car" to request things at home. She loves you the sign the numbers 1-50 to her, and she will sign them back when prompted. She could use a little work on her precision, though--instead of 6, 7, 8, 9, 10, she will sign 7, 7, 7, 7, 10! :-)

Arlin and I are wondering how we're going to keep Katie busy all summer and also get our work done. We will have to take shifts with working and watching her. She'll have hippotherapy on Monday evenings and adaptive swimming on Wednesday evenings starting in a couple weeks, but that's really the only structured activities we've come up with so far. Katie will go to summer school for the first time this year, but it doesn't start until July 20. Her support educator is going to send home all of Katie's materials from school, though, so we'll at least be able to work on those with her over the next few weeks. It will probably be a long summer at times, but we'll just take it one day at a time and try to come up with some fun activities when we can!

School Skipper??

2009-05-16T09:56:00.003-04:00

It seems our smart little cookie Miss Katie has left school early so many times this spring due to being sick or having doctors' appointments, that she has decided she kind of likes those short days! Arlin picked her up early on Tuesday for an audiology appointment. On Wednesday, Wanda (her interpreter) said Katie was fussy on and off all day. So Wanda took her to the motor room, and Katie didn't really want to go there either, so she let Katie lead her where she wanted to go. Wanda thought Katie was taking her to the library (usually her favorite), but it turns out Miss Katie went to the nurse's station, and then to the front office, looking for Mom or Dad to pick her up!!

Then Thursday afternoon, she walked out of her classroom when she thought Wanda wasn't watching. So Wanda followed her but stayed back where Katie couldn't see her so she could see where Katie was going. The little stinker went to the front office again, and when she saw we weren't there to pick her up, she walked on over to her kindergarten teacher's room looking for her! Is she a hoot, or what?! I think she got a little mad when Wanda made her come back over to first grade. :-)

That child definitely has a mind of her own! She cracks me up sometimes!

Spring Pics

2009-05-10T13:34:00.005-04:00

Katie took a really good spring school picture this year! I think she is starting to understand the concept of looking at the camera and smiling. She is starting to look so much older! She is definitely growing up fast.

She recently participated in her last Special Olympics event of the school year. This was the motor skills event, where they did activities at different stations and ran an obstacle course. Her support educator said she participated in all the events and really enjoyed it! She got a t-shirt and a gold medal at the end of it.

Katie made me some paper flowers and a picture frame at school for Mother's Day. Aren't they pretty? I loved them! Happy belated Mother's Day to all the great moms I know!

On the Mend

2009-05-03T07:44:00.002-04:00

Katie is finally feeling better! Within a couple of days of starting her antibiotics and ear drops, she was feeling much better and was able to go to school the rest of the week. She even had a field trip for Special Olympics on Friday and did well at that. Arlin and I were hoping to go to that, but we were busy with work and weren't able to take off. I was disappointed--I really wanted to go because it was the last event of the school year. Oh well, the important thing is, Katie is healthy again! Let's hope we've seen the last of spring illnesses around here!

Illness Update

2009-04-27T22:26:00.003-04:00

Katie saw the pediatrician today, and she does have a really bad sinus infection. And on top of that, she has an ear infection. We kind of suspected something might be going on with her ears because she was poking at the left one all day yesterday. So she's on another 10-day round of antibiotics and also has ear drops for the ear infection.

We're not sure whether she'll be going to school tomorrow or not. If she feels as lousy as she did this afternoon and evening, no way will she be able to go. She'll have to make some huge improvements overnight. Just hopefully, she'll sleep good.

This has to be one of the most challenging few weeks we've had in a few years. Poor Arlin has to be exhausted. He is the one who primarily gets up with Katie when she wakes up in the middle of the night, so he's hardly had any continuous sleep at all in the past week. I try to get a somewhat decent night's sleep so I can work, but that's kind of hard to do when I'm worrying about Katie (and Arlin!). Plus, with Katie being home so much from school the past five weeks and feeling bad and needing lots of attention most of the time she's here, I am so behind with work it's not funny. And given that my job is totally deadline-driven, it's not a good situation. People are only understanding for so long when they are waiting on things from you and you are holding them up. Ugh!!

Did we actually take a vacation a couple weeks ago? I think it was all a dream...

Feeling Bad Again

2009-04-26T16:18:00.003-04:00

Not sure what it in the air here this spring, but it sure is doing a number on Katie! She started feeling bad again last week and has a ton of congestion now. We thought it was probably allergies, especially since she didn't have any symptoms while we were in Florida, but now I think it's turned into a sinus infection. She has lots of head and nasal congestion, and she can hardly swallow. She's hardly had anything to eat in the past 36 hours. Every time she tries to swallow some food, she gags on it, like her throat is swollen or full of drainage and she just can't get it down.

Her sleep has been a mess again this past week. She's been up in the middle of the night every night except one, and she's slept almost all day yesterday and today because she is so tired. She is so congested and stopped up, she just gasps for air and wakes herself up.

She is scheduled for allergy testing this coming Friday, but I think we are going to have to take her to the pediatrician tomorrow to see if she has a sinus infection and to make sure she also doesn't have strep again. If the doctor puts her on antibiotics, we'll have to delay the allergy testing for a few weeks, until the medication gets out of her system. I'm hoping they'll give her something tomorrow, because she is just miserable.

Kind of disappointing to wait so long for spring, and then not be able to get out and enjoy it!

We're Back!

2009-04-19T21:45:00.003-04:00

We're back from a few fun, sunny days in Destin, Florida. We left on Tuesday instead of Monday due to bad weather in Kentucky and Tennessee (bad storms, tornadoes, etc.), so we skipped Memphis and New Orleans and went straight to Destin since we had a reservation there beginning Tuesday night.

We had a really nice time! The weather was perfect, the house we rented was super-nice, and the beach, as always, was beautiful. Katie enjoyed walking in the sand and swimming in the pool--or, at least her version of swimming, which was more like Mom and Dad carrying her around in the water! We also found a nice park with a playground, so we went there a couple of times.

Katie loves identifying coins right now, so she entertained herself a lot by playing with those and having Mom sign them to her. You can see in one of our pics, she's holding a dime in her hand (she carried it EVERYWHERE!), and then in the next couple she and I are signing "dime" to each other. She's so funny!

Make an on-line slide show at www.OneTrueMedia.com

Heading South!

2009-04-12T07:20:00.004-04:00

Katie is on Spring Break next week, so we decided to get away for a few days. Katie loves to ride in the car, and also enjoys walking around and seeing the sights (mostly, the people!), so we're off on a road trip tomorrow that will take us through Nashville, Memphis, New Orleans, and then to Destin, Florida, for a couple days of sun and beach. We'll be back next Friday evening. Hope everyone has a good week!

The Old Katie is Back!

2009-04-08T10:00:00.006-04:00

My happy girl is back! Each day, she's been returning more and more to her old self. Whatever she had must have really hit her hard. I've never seen her that tired, lethargic, and disinterested before. I'm happy to see her smiling face and hear her giggles again!

She went for a couple walks at the park this past weekend and enjoyed herself.

Of course, along with the old Katie comes the sleep issues again. She went to bed last night at 7:45 and was awake at 12:15. Thankfully, she went back to sleep at 2:00 and slept until 6:30. We figured those 11-hour nights would be short-lived! Oh well, it was nice for 10 days at least. :-)

Rounding the Corner

2009-04-02T09:52:00.003-04:00

Katie slowly seems to be getting back to her normal self. Yesterday evening, she played in my office for almost two hours, watching Disney videos on my computer, coloring in a notebook, and identifying coins with me. She had several smiles and giggles while we were playing. It was so good to see those after these past few weeks! She still seems more tired than usual, but that seems to be improving a little every day. I sure hope we've seen the last of illnesses around here for a long while!

Where's My Girl?

2009-03-31T07:01:00.002-04:00

Katie just hasn't been herself ever since she was sick a couple weeks ago. She's been real withdrawn and doesn't seem to enjoy any of her favorite activities. She used to love going for a walk around our neighborhood. Now she walks to the end of the driveway and promptly turns around and heads back in the house. Arlin tried taking her to the park yesterday, usually one of her favorite places, and she walked a few yards and starting screaming. She screamed the whole way back to the car and on the drive back home. She'll still go for a drive with us, another of her favorites, but she's not excited and animated about it like she used to be. And at home, she is much more quiet and clingy than usual.

We're not sure if she still just doesn't feel great, or if she had a reaction to the antibiotics she was on, or if the illness messed up her neurological system, or what. It's such a frustrating situation when your child can't tell you what's bothering them or if they feel bad. It's just a guessing game. All I know is, I miss my funny girl and hope this passes for her soon!

IEP Meeting

2009-03-25T10:53:00.010-04:00

Arlin and I attended Katie’s IEP meeting yesterday for the 2009-2010 school year. Since Katie will be repeating first grade next year, she will have all the same teachers and therapists, except for her speech therapist. She will be switching to a new speech therapist in the fall, but it is someone who is familiar with Katie and has worked with her some before.

Katie has a lot of challenging goals for next year! She is making great progress, though, and we’re sure with her great educational team in place again, she’ll be able to meet most of these goals or at least be making good progress on them by this time next year. Here are some of the things she’ll be learning:

Katie will write her first and last name with minimal assistance. (She can already write her first name with just a minimal amount of support at her wrist.)
Katie will type three simple sentences. (They are going to start working on typing with her in case that becomes an easier method for her to complete her work instead of writing. She can already type her first name independently when the letters are signed to her.)
Katie will sign 50 new words per trimester related to her daily environment (clothing, food, people, etc.) to increase her functional language.
Katie will add numbers with a sum up to ten using Touch Math. (She is already starting to comprehend addition up to the number five. Amazing!)
Katie will add sums of money up to fifty cents. (She can already identify the penny, nickel, dime, and quarter, and sign these independently. They are starting to have her use coins to purchase her milk in the cafeteria so she will start comprehending what you do with money.)
Katie will sign numbers 1-75 independently. (She can already sign 1-30.)
Katie will complete two-step simple directions; for example, “sit down and open book.” (Right now, she completes one of the two, but ignores the second.)

She also has several other goals related to sign language, reading comprehension, and math skills. It is so amazing to see the progress she makes at school and how creative her educational team is at coming up with ways to teach new concepts to her. We are so blessed to be in this awesome school district!

Sick Girl and Cancelled Vacation

2009-03-18T09:29:00.003-04:00

Anybody remember the lyrics from that song on the old Hee Haw show in the '70s: If it weren't for bad luck, I'd have no luck at all...? Well, that's our motto here in the Kauffman household! If plans are made, then you can count on something happening to change them!

Arlin and I were planning a trip this week to Florida to celebrate our 20th wedding anniversary. We were supposed to leave this morning. Arlin's parents and sister were going to stay at our house with Katie. This was the third time we've scheduled this trip, so we were hoping third time would be "charm." Nope, not happening!

Monday around noon, the school nurse called and said that Katie was sick and had a fever. We had kind of suspected she might be coming down with something this past weekend because she was tired and irritable both days, which really isn't like her. Sure enough, she's got major congestion and a likely sinus infection. She was home from school again yesterday. She seemed to be feeling a little better this morning, so her teacher said to send her to school for a little while, and if she got tired or irritable, she'd call us to come get her. You can tell she's still definitely not near 100% yet, though.

We're disappointed we didn't get to go on our trip, but honestly we're not surprised. Our plans just never seem to hold anymore, so we don't put a lot of confidence or hope in them to begin with--we just pretty much take things a day at a time and deal with them as they come. I think we might take the hint on this trip now, though--after three cancellations, I don't think it's meant to be! At least it's supposed to be 70 here today and the sun is out, so that's some consolation.

Developmental Paed Appt.

2009-03-13T10:56:00.005-04:00

Katie had an appointment with her developmental pediatrician Wednesday afternoon. That is one appointment we always enjoy going to--we love talking to her, she always has such a great perspective on "all things Katie."

We've decided to go back to the Trazadone for Katie's sleep issues, at least for now. We weren't seeing any better results on the Celexa at all. In fact, we tried upping the dosage, and it got worse! The Celexa really hyped her up, to where she wasn't falling sleep until around 10:00 or 10:30 (her normal bedtime is usually between 8:00 and 8:30), and then she was back up between 2:00 and 3:00. Katie's doctor said this can be a side effect if the dosage is too high for the child. She did suggest trying Lexapro and gave us a prescription for that, but we are going to wait a few weeks before trying it. We don't want to keep switching back and forth between all these different meds and get her system more out of whack than it already is.

We talked a little about Katie's communication and the discrepancy we see between how much sign she knows at school in structured activities (a ton!) versus how much she really uses in general situations to communicate (rarely). We think--and I've expressed this concern to Katie's educational team before--that most of the words Katie learns at school, she doesn't know in the general context of her everyday life. For example, she can identify a flower on a picture card, and she can even identify the printed word "flower," but if she walked outside, she couldn't tell you where a flower was. This is something I think we need to start working on more, both at school and at home, to make those signs make sense to her more in her everyday world. I plan to discuss this more at Katie's IEP meeting in a couple of weeks and see if we can add some specific goals related to this for next year.

Katie's Favorite Pastimes

2009-03-08T15:32:00.003-04:00

Katie's favorite pastimes right now are taking walks, taking rides in the car, and watching videos on her DVD player.

She'll take a walk, no matter what the temperature! This was taken just last Monday, when the wind chills here were in the single digits. Luckily, this weekend, we've been near 70! Welcome, spring...finally!

The first thing she wants to do when she gets home from school is head up to my office and watch "Playhouse Disney" videos on my computer...while sitting ON my desk! I should have known, you let her do something one time, and she NEVER forgets! :-)

Sleep Med Progress

2009-03-02T10:24:00.003-05:00

The jury is still out on the new sleep med. Katie had a few 9-hour nights last week, but she also had two 7-hour nights (which meant she was up at 3:00 a.m. since she goes to bed at 8:00) and one 5-hour night (she was up at 1:00 a.m. Sunday morning!). So, really, no better response than the Trazadone so far. She's due to be bumped up on her dosage later this week, so we're going to stick with it a couple more weeks and up the dosage and see how it goes. I still just have this feeling that nothing is ever going to completely "cure" her sleep issues, though. :-(

New Sleep Med

2009-02-25T09:54:00.002-05:00

Katie's sleep has been getting progressively worse again this winter, so we decided to try her on a new sleep med. We've heard from several other CHARGE families whose kids are doing well with sleep on Celexa, so we switched Katie to it this past weekend. She is taking it in liquid form and is only taking 1 mL before bedtime right now, although we can bump it up some after a couple weeks if we want.

For her first 3 nights on it, Katie slept 9 hours, but last night she only slept 7 hours and was up at 3 a.m. We're going to keep trying it for awhile and see how it goes. Sometimes I think she is wired neurologically to wake up after just a few hours of sleep and that nothing is going to make her sleep 10-12 hours a night like a typical child does. Still, 7 hours is better than 3 or 4, I guess! Keep your fingers crossed for us!

Katie Boot Camp

2009-02-18T09:26:00.006-05:00

Arlin's parents and sister stayed with us a couple days over the weekend. Twila wanted to learn Katie's daily routine because they are going to stay with Katie here at our house for a few days in March while Arlin and I go to Florida for a late 20th anniversary trip. Katie will be in school the days they are here, so we're hoping she doesn't wear them out too much--at least they'll be able to rest up some while she's in school!

Twila got some good pictures of Katie while they were here.

Twila got me ready for school Friday morning. But I was up early (3:00 a.m.) and fell asleep at school during my Valentine party!

I love to go for a walk around our neighborhood when I get home from school!

I hung out in the basement with Grandma, Grandpa, and Aunt Twila Friday evening while Mommy and Daddy went out to dinner!

Endo Visit

2009-02-12T10:12:00.002-05:00

Katie had a routine check-up with Endocrinology this week. Her growth is coming along great! She gained 5 pounds since she was seen by Endo last August!! She is now up to 48.5 pounds. We could tell she's grown a lot because she went from wearing 5T when she started school in the fall to wearing size 7 now. She blew right through sizes 6 and 6X--which has kind of made it hard keeping enough school clothes on hand to fit her! It seems like every few weeks, we've had to buy new clothes. But we're not complaining--we'd rather be clothes shopping than having to consider growth treatments. Endo said that her current height and weight puts her at about the size of an average 5 1/2 year old, which is what her bone age shows. We don't have to go back for another follow-up for 9 months now. It's nice to start being able to push all her appointments farther and farther apart. I feel like her medical issues are finally stabilizing for her.

Happy Monster Band

2009-02-06T09:58:00.002-05:00

Katie has a new favorite on Playhouse Disney: the Happy Monster Band. They are little video "shorts" that come on between shows and feature this band of animated monsters singing various songs. She loves them! She is totally mesmerized when they come on. Here's one of her favorites--it even mentions a monster named Kate! :-)

Make an on-line slide show at www.OneTrueMedia.com

Winter Beauty??

2009-01-31T13:40:00.004-05:00

They say that beauty is in the eye of the beholder. Well, this beholder is failing to see the beauty of several inches of snow and ice!

OK, maybe it did look pretty when it first came down, but now I'm ready for it to just melt! We had three snow days for school this past week, and Friday was on a two-hour delay. Needless to say, Katie's routine has been messed up all week. She's been a real trooper, though, and has done pretty good entertaining herself--although Arlin and I have been at a standstill with work as a result!

I guess I shouldn't complain, though. Several places in Kentucky are still without power, and some won't get it restored for weeks yet, they are saying. I'll just keep marking off the days on my calendar until spring arrives!

More Christmas & Birthday Celebrations

2009-01-27T20:16:00.006-05:00

We spent last Saturday with Arlin's parents and sister and celebrated Christmas and Katie's birthday with them. We just now got to celebrate Christmas with them due to all the bad weather they've had in northern Ohio this winter. We opened Christmas gifts when we got there.

Katie coloring on the big, new Pooh coloring book she got.
(Notice how she likes to color on the outside cover!)

Katie opening a Bible stories book that she likes to look at when we go to Target.

Katie took a nap after lunch because she had been up since 2:30 a.m.! After she woke up, we had dinner and celebrated her birthday.

Aunt Twila had a Dora the Explorer cake made for Katie.

Family picture
(Note the ever-present DVD player that Katie wants to take with her everywhere she goes right now!)

Mommy signing Katie's favorite song from school, "Hello World," to Katie.

We had a really nice visit, but as usual, the day went too fast. We'd love to live closer to our families so we could visit them more often. We miss them!

Happy Birthday, Katie!

2009-01-20T21:30:00.009-05:00

Our "baby" Katie turned 7 this past Saturday! Hard to believe!! We didn't really do anything special for the day. Katie had a bad sleep night Friday night/Saturday morning and was tired, so we just enjoyed a relaxing day at home. We ordered lunch from LaRosa's, one of our local favorites, and Katie enjoyed their homemade kitchen chips (chips are a new favorite snack!), cheesy flatbread, and chicken tenders.

Nothing better than chips and a movie on your birthday!

We were going to have a combination birthday/Christmas celebration with Arlin's parents and sister on Saturday, but they had over 12 inches of snow last week with more on the way on Saturday, so we postponed our trip there until next weekend.

We visited my parents in KY on Sunday, but Katie had a bad sleep night again Saturday night/Sunday morning and fell asleep as soon as we got there. She woke up after about an hour with a sharp fever and acted like she felt really bad. We gave her some Advil, but it made her sick to her stomach, and then she fell back to sleep and slept the rest of the afternoon. Then, when she woke up, she was fine! Weird. I really think her neurological system gets all out of whack sometimes.

Sleeping the afternoon away in KY

Katie was off school on Monday for MLK Jr. Day, so we opened a couple presents that day that we didn't get to open over the weekend.

Mom helping with the paper
(Katie isn't too keen on ripping the paper off herself.)

The best gift of all: roller skates! We can't wait for the weather to warm up so we can try them out!

Transition Plans

2009-01-13T10:54:00.002-05:00

It's hard to believe the school year is already half over! The weeks just seem to fly by when Katie is in school full-time.

Late last week, Katie's support educator proposed to us the option of holding Katie back a year and having her repeat first grade again. Arlin and I thought a lot about it and have decided to hold her back. With Katie's sign language really starting to progress, we feel this will be a good opportunity to allow her to catch up some with her peers, both academically and socially. Katie will stay with the same team of educators and therapists, which means she won't have to transition to a new building and a new set of people. This alone should make a big difference for her, as she lost several weeks last year just making the transition to her new team and learning her way around a new part of the school.

It wasn't an easy decision, but given that Katie will be able to attend school until she's 22, this seems like a good time to use one of those extra years to give her a chance to catch up some. Otherwise, the gap will just keep growing and growing, making it harder for her to be able to participate in the mainstream classroom with her typical peers for part of the day. It's actually kind of a relief, knowing we won't have to go through the stressful transition that we went through last fall.

It also looks like there's a good possibility that Katie may qualify for extended school year (summer school) this year. We are hoping so, as it will give her a structured activity for several weeks in the summer and will allow her to continue her school activities, which she loves so much. We should know more about that in a few weeks.

Happy New Year!

2009-01-07T17:10:00.004-05:00

Happy New Year from the Kauffman's!

We had a big adventure over New Year's--we went to Florida!! We didn't tell very many people we were going because we didn't want to jinx it. Seems like every time we make plans, something happens that we have to cancel or postpone, so we weren't taking any chances this time!

We actually drove the whole way--15 hours one way--and Katie did GREAT! She watched videos, looked at books, colored, played her school activities with me, napped, and never fussed one time. She was amazing!

We only stayed two full days, so we were on the go the whole time. We didn't want to stay too long because we didn't know how Katie would do being in a strange place for that long. This was the first long trip we've taken with her in almost 3 years, so we had no idea how she'd do adjusting to a new place. But she did fine! She seemed a little confused in the evenings, between dinnertime and bedtime, and sometimes went to the door and asked to leave, but she never got upset when we told her no.

We went to the beach one day. Katie loved it! She loved the sand and walking in the edge of the water. Who would have imagined that--the child who wouldn't even touch sand a couple of years ago was sitting and playing in it and didn't want to leave! Our townhome had a small "splash" pool in back of it, and Katie loved that too.

We went to Disney Magic Kingdom one day too. Katie did pretty well there, but we only stayed about 4 hours. It was SOOO crowded with it being New Year's, and I think the crowds were starting to get to Katie (and us!). We'd like to take her back sometime when it's less crowded so she can see and do more.

Enjoy the pics from our trip! We sure had a great time!

Make an on-line slide show at www.OneTrueMedia.com

Cardiology Appointment

2008-12-28T14:46:00.002-05:00

Katie had a cardiology follow-up on Christmas Eve. If you're looking for a good time to make a doctor's appointment when you can get in and out relatively quickly, Christmas Eve is the time to do it! We were in and out of cardiology in an hour and 40 minutes, which may still sound like a long time, but was a record for us! It's usually well over 2 hours.

Katie got a clean bill of health from her cardiologist. He said the echo they did in the OR back in July when she had her dental work done looked great, and her blood pressure, pulse, and EKG all looked normal at this follow-up appointment too. So he doesn't need to see her back for another 3 years. Yay! It's so nice to see Katie's medical issues stabilizing and her appointments starting to get farther and farther apart.

Christmas Break Has Begun

2008-12-22T19:43:00.006-05:00

Katie's last day of school this year was this past Friday. Her class had a holiday party at school, and she enjoyed participating in all of the games and activities. She is becoming much more tolerant of things like this at school. In past years, class parties were too chaotic for her, and she usually had to leave after a few minutes because she would get overstimulated.

Katie's classroom teacher gave her three books and a certificate for a pizza. Her support educator gave her some foam puzzles and a book, and her interpreter gave her a Winnie the Pooh word game. That was so nice and generous of them to give all the kids gifts like that!

We have a busy week planned. Katie has a cardiology appointment on Wednesday afternoon. We're hoping it won't be busy since it's Christmas Eve and that we'll get in and out quickly. Cardiology is usually slower than Christmas (no pun intended!). Then we'll go to my parent's in KY on Thursday, and Arlin's parent's in northern OH on Friday. I still have a little shopping to do and ALL the gifts to wrap, not to mention some work that has to be wrapped up by Wednesday, so I think the next couple of days are going to be busy!

Hope everyone has a Merry Christmas!

Stomach Bug

2008-12-15T10:59:00.002-05:00

Katie ended up finally catching the stomach bug that is floating around her school. She got sick after dinner Friday evening and was sick all day Saturday. She seemed a little better yesterday, and even ate a little bit of lunch without it bothering her. But then she didn't want any dinner, and she ended up sleeping 10 hours last night (which is a rarity for her). She seemed real lethargic this morning and didn't want any breakfast. We sent her to school, thinking that might perk her up a little, but the school called after only about an hour and said she just didn't seem to be feeling well, so Arlin has gone back now to get her. Hopefully, it will pass soon, and Arlin and I won't end up with it. I know some friends' kids who had it for several days before it went away, though. Ugh.

New Adventure!

2008-12-11T15:04:00.004-05:00

Guess what Katie did today? Went ROLLER SKATING!!! Her class went this morning as an activity for area Special Olympics participants. Arlin and I didn't get there until late, so we only saw her for a few minutes. But when we walked in, there she was out on the rink, on skates, with her interpreter and teacher helping her. They said she had been skating for an hour and 20 minutes straight, and every time they stopped, she'd sign "more"! I walked around the rink a couple times with her and helped her, and she seemed to be enjoying it. I didn't get to take any pictures--it was kind of dark on the rink, so I don't think they would have turned out, anyway. But I wish everyone could have seen her--she was having a blast! I guess I know something else to put on her Christmas list now!

Busy, Busy, Busy!

2008-12-05T00:08:00.003-05:00

We've been busy here lately, so I haven't had time to post any updates in the past week or so. Nothing out of the ordinary going on--just work, school, errands, life!

Katie had a good Thanksgiving break last week. We went to my parents in KY for Thanksgiving, and then went to Arlin's parents in northern OH on Saturday. Katie did really well on both trips. She discovered a new favorite food, too--green beans! She couldn't get enough of them on Thursday and Saturday!

We're heading back to KY this weekend. I have a class lunch on Saturday and a baby shower to go to on Sunday. Arlin and I may sneak away for some Christmas shopping and dinner Saturday evening. Hard to believe that Christmas is only three weeks away! Besides just a tiny bit of shopping, I haven't done anything yet! No decorating, no cards, no baking. I think it's going to be a busy month!

Score!

2008-11-26T22:04:00.002-05:00

Katie had a field trip with her SEALS class this past Monday. They practiced soccer for the Special Olympics! Their class and several others from Mason and other schools in the area went to a local indoor sports facility and practiced. Arlin and I went and watched for about an hour.

We were amazed at how well Katie did, considering they were gone from school for over 3 hours! We thought sure she'd get bored there and want to leave, but she did fine. Her interpreter brought along a backpack full of books and activities that Katie likes, just in case, but I don't think they even had to get anything out! She is getting much better about transitioning to new places and activities, it seems.

They will compete sometime in the spring, I think, though I don't know the date yet. Enjoy the pics! (The woman in the dark blue sweater is Katie's interpreter. The little girl in several pictures with Katie is Kaitlyn, one of the little girls in her class. She just adores Katie! They are really cute together.)

Make an on-line slide show at www.OneTrueMedia.com