A journey through life: starring a child with Cerebral Palsy

Horses

2006-07-05T15:42:00.002-07:00

This is the girls on the horses at the Fourth of July celebration.

Fourth of July

2006-07-05T15:42:00.001-07:00

We stayed local and celebrated in our historic downtown. Everything was free and the girls had a great time. A got to bounce in a jumping thing and K made a sand art bottle. Both of them got to ride ponies/horses. We ate carnival food and then settled down in the back of the van to watch the fireworks. They had just finished when the rain poured down so we were lucky. It was a wonderful and relaxing day since we cancelled suit therapy for the day. Our thanks go out to all the men and women who have served and continue to serve our country. A special thanks goes to my brother Stephen, retired infantry in the USMC.

Here's a picture of the girls on the Fourth of July.

Fourth birthday

2006-07-05T15:42:00.000-07:00

K had a wonderful fourth birthday. We celebrated at Grandma's house. She had an angel food cake with blue whipped cream on top for the "ocean". Then we put ocean creatures on top. She thought it was great. It was a water birthday and she received a swimming pool, a swimsuit, and some swim accessories. She also got a toe piano (you're supposed to play it standing up). This is a great toy for her because she can lay on the floor and roll around on it to make all kinds of music.

Bench sitting

2006-07-05T15:18:00.000-07:00

Well, let's just say she's not a big fan. Some people say that suit therapy is just torture. I think K would have agreed at this moment. Fortunately, the receptionist who has fallen in love with K brought her a banana and after a 30 minute screaming session, K finally quieted down.

Suit with helmet

2006-07-05T15:00:00.000-07:00

These are some pictures of her in the whole suit (with the hat). We didn't use the cords on the hat because she's just getting used to it. The rest of the cords, however, are adjusted to help her body move in space better and give her some support in her trunk. They also provide resistance which is good for when she is walking.

Suit Therapy

2006-07-05T13:21:00.001-07:00

This is a picture of K in her suit. Here is what's called "the spider" because of the 8 bungees (4 in the front and 4 in the back) attached to her. She really enjoys a game they play where they push her down to the floor and she has to lift them back up. This works on her extensor muscles in her back and her head control. Then they lean her all the way back and she has to pull up to a standing position. This shows her in the suit. Also, she is wearing knee imobilizers just for some stability. She does love this game, but it's very tiring for her.

House update

2006-07-05T13:21:00.000-07:00

This is our house....we took this picture before we made our two week vacation. While we were gone they tore it down because they put the garage on the wrong side. Major oops! By the time we returned, however, it was back to where it was when we left. We are glad that the mistake was now rather than later. Hopefully, everything else will go very smoothly.

Pennsylvania trip

2006-07-05T13:10:00.000-07:00

We went to Pennsylvania after West Virginia and had a wonderful time. As always, it was great to see the family. We didn't do as much as we had planned to do while there because both K and myself were sick, but we still had a good time. We went to the Philly Zoo and to Dorney Park. The girls loved the zoo. K's favorite was the elephant. A's favorite was the polar bear. My favorite was the tortoise with a disability. He was so cute. He broke his leg a while back and it never healed properly so they put him up on a dolly and strap it to his back. This gives him mobility! It was so exciting to see. This is a picture of him. A also loved going to the candy store. My favorite trip was Dorney Park. I love all the wild rides.

Granny and K

2006-07-05T12:58:00.000-07:00

It's obvious to me in this picture just how much K loves Granny. The feeling is obviously mutual. We learned in our visit that Granny's job around the house while growing up was to take care of Junie, another little boy with cerebral palsy. Because of this, she feels right at home with little K and takes great care of her. She even got down on the floor to play with her and kept her well-fed and happy during our entire visit.

Hiking in WV

2006-07-05T07:35:00.000-07:00

We found all sorts of interesting things when hiking in WV with Mims. That was the highlight of A's trip. She found some bones of animals and decided she wanted to be a palentologist. Then, she found a dead beaver (who was shot by a local) and decided she wanted to be a veternarian. She was very saddened by the beaver, but it opened the way to an excellent conversation about conservation and the circle of life. This is a picture (albeit not a very good one) of a heart shaped pond on the left that A thought was very cool. On the right is a picture of her holding a caterpillar on a stick that she found. She liked to hold them, but didn't like them to move while she was holding them. Mims helped her pick up quite a few of them. She wanted to rescue the caterpillars by moving them off the road. The outfit is one that she and Mims picked out together. She loves it!

More Dress Up

2006-07-05T07:13:00.000-07:00

A on the left with an outfit she picked out herself. Can you tell she has a wild streak? On the right is K the skunk.

Dressing Up-WV

2006-06-13T10:04:00.000-07:00

We are currently visiting family in West Virginia. They are opening a shop with all sorts of knick-knacks, balloons, ceramics, and costumes. We took the girls to the shop which is still not open so that they could try on some of the clothes. They may even be pictured in the shop's advertising brochure. The picture above is A in her "French girl" outfit. She's not too keen on the hat, but she loves the costume.

House 3

2006-06-09T06:32:00.000-07:00

Here's the beginnings of the basement with the reinforcement bars. Still no floor....we hope to see that poured next week.

House 2

2006-06-08T19:07:00.000-07:00

They are digging the trenches around the outside in order to put the reinforcement bars and pour the concrete.

House Progress

2006-06-06T05:23:00.004-07:00

Well, they've put the boards down to get ready for the foundation.

Exercise and good health

2006-06-06T05:23:00.003-07:00

I have now lost approximately 42 pounds and 38.5 inches. I have lost 4 pant/dress sizes. I feel like a new woman. I am proud of myself for taking time for me, but I am also proud of my family for letting me do what I need to do in order to be successful with my exercise and diet. They have been so supportive and I look forward to reaching new goals.

Camp Hollywood

2006-06-06T05:23:00.002-07:00

...where everyone's a star. Both of my girls are attending and loved it! Everyday they have a movie theme. They do arts/crafts associated with the theme, science projects, cooking, music, etc. Yesterday, they did Charlotte's Web and they brought home the cutest pigs made out of a coke bottle. They both made friends and both had smiles on their faces when I arrived. Even better news, DH and I had the chance to go to K's IEP meeting without having to find childcare and then we went to lunch afterward which is a very rare treat. It was a wonderful day all around.

School Update: K

2006-06-06T05:23:00.001-07:00

Things are always a bit challenging when you're talking about IEP meetings (Individualized Education Plan for students with special needs). We had one at the end of the school year for K, but left with a bad taste in our mouth. K met none of her goals or objectives for the 2005-2006 school year. At the meeting, she was placed in the same sort of setting. After much deliberation, we contacted the head of the early childhood program and asked for a new meeting. We met and discussed some alternate placements and felt much better about the response from the school and the staff. I look forward to meeting her new teacher and seeing a change with her in a new environment. My one concern is that she will be attending school with kids who have more disabilities than the kids in her class this year. I want to make sure she will be continually cognitvely challenged while learning her communication device and preparing for kindergarten.

School Updates: A

2006-06-06T05:23:00.000-07:00

Well, school is out. I met with A's teacher the last week of school to find out how she did on her end of the year testing. She scored a 100% on her final in math and a 98% on her final in language arts. I'm just amazed because math was definitely one of her weaker areas coming into the school year and now it has become a definite strength. She scored a 5 on her last writing sample which is the highest score you can receive in 1st grade. As for her standardized testing, she scored at the exceeds level in both math and reading. She scored at the meets level for language arts. She missed the cut off for exceeds by just 10 points. I was very pleased to see this...especially the math which means our hard work with her is paying off.

As for socially, A has made lots of improvements. She really is a charming young girl. Karate has been such a benefit to her character and her self-confidence this year. I hope she will continue with it for a long time to come. A made a couple of friends this year at school, although her teacher let me know that her closest friend was the one she fought with much of the time. A is looking forward to going to a new school next year and I am looking forward to taking her. I am sure that the time we spend together in the car coming and going will strengthen our relationship.

Dream car

2006-05-22T16:11:00.000-07:00

Cool car, cute dog and me....what a day! This was at the tea. A girl can pretend. (:

Well, she's three

2006-05-22T04:08:00.004-07:00

Ky is three so I guess that's the only excuse I can come up with for her looking like this!

Romeo and Juliet

2006-05-22T04:08:00.002-07:00

So I assistant directed a play this year and had a blast with it. The only down side was that I was away from my family an awful lot over the past few months. To them, I say thank you very much. I look forward to helping again next year. The students were awesome and everything came off without a hitch. Pictures to come.

A's prolific writing

2006-05-22T04:08:00.001-07:00

A's teacher sent home some of her school work from the year and the most impressive thing she sent was this writing about our trip to Disney World. I'm copying it letter for letter.

"Guess what! My family and me went to walt disney world it was spictaculure! I loved it so much. And also I went to clear water beach! And guess what I got my clthes all wet! and my shoes filled with sand! I felt very uncoufurterbull! so I asked for a towel! but that's nto all I fineally got dry! after I finish Disney I go to the hotel and sleep. The first day at Disney Wolrd I rode a ride called Goofys barn fun! The roller-coaster goes up then down then sideways. That was increteybull and fun. And also I herd the increatbulls music. That was super. After that I rode on a other ride. That was a fun song to listen to! Also I saw a show at Cinderrela's castale and she got to be crwed a princess! And on the 3rd day I went on a ride called the dinouosour. But it was a scary ride so I got the sivers! But my mom wasn't scared. And neither was Grandma or Y (our friend who went with us). So I siad I didn't like it! Because it would Scare your pant's off I tell you. Bcause there was a scry dinousur. So that's why I didn't like it. So my mom siad I don't have to go on it again. But then we went on a not so scary. Also on the 3rd day I went on a ride called The Twierly macien. That was fun too. And also I saw Jasmine (backward J), and Bell, and snowwite, and Cinderealla! and they all looked Buteifull! My favrite was Jasmine (backward J again). And I also saw Aliadin. After that I saw Butey and the Beast. that was a fun show to! But I relly loved space moutin. Because I went on it 2 times. But I liked it a lot. I also enjoid (backward j again) the rock'n roller coaster. "

She used hyphens to split words in there too which I thought was pretty impressive, however she split the word wherever she wanted. She even put a period on the next line once connected by a hyphen.

Driving Magic

2006-05-22T04:08:00.000-07:00

So the three year old wants to drive. I took her to a horse farm this Saturday where they teach children with disabilities how to drive a horse from a carriage. They have a lift in the back of the carriage and they hook them in. I saw a young lady driving with her feet. She had one rein around each ankle and when she wanted the horse to go left, she would pull with her left foot and vice versa. It was amazing. K didn't actually drive this Saturday because I didn't take her chair, however we did do some networking. We met her new speech therapist. We also met a chiropractor so maybe we can start going there again. She'll be going back next Saturday with a friend from school and she'll actually get to drive then. We'll keep you posted. I didn't take any pictures this time, but I will when she's driving.

Tea Party/Mother's Day

2006-05-17T19:46:00.002-07:00

For Mother's Day, my mom's Sunday School class had a tea party and I had the pleasure of attending with her. We had a light lunch at a wonderful little cafe. The food took forever to arrive, but when it did it was great! Then we went to one of the ladies' house and sipped tasty tea. The weather was poor so we had to move inside, but it cleared up long enough for us to get some nice pictures. I feel so very fortunate to have a mother who is so giving, caring and loving.

At home, I was treated very special also. My husband cleaned the entire house and it's still clean a week later! A wrote a poem, typed it on the computer and even created a picture on the computer. I plan to have it framed so that we can put it up at the new house. K decorated a flower pot with sponges. They also made breakfast in bed for me. It was lovely and I felt very appreciated.

Romeo & Juliet

2006-05-17T19:46:00.001-07:00

I'm assistant director for the play "Romeo and Juliet". It has been a challenging experience, but very fun and unique. I offer many thanks to my family for allowing me to stay many late nights at school to help with this. We will put on the play this Friday and Saturday. I look forward to seeing the fruits of our labor.

K's new IEP

2006-05-17T19:46:00.000-07:00

So we had her new IEP. There were both negative and positives as there often are. The good news is that she did have a good teacher. Her cognitive skills continue to be on target and she did learn quite a bit about typical preschool things. Unfortunately, the difficulties she has (motor, expressive communication) were not mastered as I had expected. We discussed some new placement options. This year she has been in a class for kids with a variety of disabilities. It would certainly be better for her if she could be in a class with children who were all orthopedically impaired. I am working to see to some changes for next year to address this. I'll keep you posted as we work towards that end.

Orange Belt

2006-05-04T18:13:00.000-07:00

It's official. A has earned her orange belt. The ceremony was a great success. Papa, Dad, sister and mom were able to attend and cheer her on. Pictures coming...I promise!

Pre-k update

2006-05-04T07:56:00.002-07:00

Well, it has been a disappointing year for K and her schooling. The one thing I really wanted her to accomplish this year was to learn how to use her device. Unfortunately, the school never got appropriate seating for her. They never got a mount for her device. She not only made no progress, she actually regressed in this area according to them. She has her IEP in two weeks and I look forward to hearing what her teachers have to say. We are looking at a new childcare center that is opening. They claim to have a full inclusion program. If they have appropriate training, we may be sending her there for a year. She also did not toilet train this year. Her "helper" loved her way too much and did not push her to do anything. Instead of becoming more grown-up, she just pouts now when she doesn't get her way. We definitely have to make some changes for next year otherwise she won't be prepared for kindergarten.

Curves Challenge

2006-05-04T07:56:00.001-07:00

I have been attending Curves for just over one year. I have attended 150 times and have now lost 30 pounds, countless inches and 5 percent body fat. I started going to combat the stress in my life. After about 6 months, I noticed another positive side effect...I was getting smaller. Once I really started working at it, the inches and pounds started coming off more easily. I am feeling better and looking better. Once I finish losing the weight, I'll post before/after pictures. I can't say enough good things about Curves.

Belt Testing

2006-05-04T07:56:00.000-07:00

A week ago, A tested for her orange belt in karate. She did a fantastic job. Tonight is the belt cermony. We are fairly certain she will earn her belt. She has made great strides in her physical performance, self-confidence and behavior as a result of karate. We are very proud of her. I will be taking pictures of her at the ceremony this evening and posting them here.

Our very own dirt

2006-05-04T07:08:00.000-07:00

On the left you can see a house that is mostly built. On the right is our patch of dirt. The view behind the house will stay. That is land that is kept by the developer as "natural habitat". Also, there's a little creek that runs back there which makes it difficult to build there. Our home is to be completely accessible for K. Some of the things we have asked for include hardwood floors throughout the house, 3 foot doors, handicapped roll-in shower, pedestal sink, space for elevator to be installed for basement acess, etc. As the house is built, we'll post pictures so you can see the progress.

Easter Sunday

2006-04-23T07:50:00.002-07:00

Here are my two darlings on Easter Sunday just before lunch. Aren't they precious? Thanks to Grandma and Papa for buying their new outfits to wear. They have pranced about in them all week. A loves her shoes too because they make a "clicking" sound when she walks. She wore them to church again today. K is very proud of her pretty pink dress.

Easter pictures

2006-04-23T07:50:00.001-07:00

This is a family photo of the four of us. We never get our picture taken together which makes this one extra special.

Easter bunny

2006-04-23T07:50:00.000-07:00

The kids with the Easter bunny. Can you tell K is infatuated? A is actually hugging the bunny which is a huge change from last year when she was still very shy.

Last Disney Picture

2006-04-16T08:33:00.009-07:00

A posing for the camera with J in front of the Rainforest Cafe at the Animal Kingdom in Disney World!

Visit with Uncle S

2006-04-16T08:33:00.008-07:00

When we were on our way back from Disney, we had the pleasure to stop and see Uncle Stephen briefly which was very nice. This is a picture of Stephen, my father, myself and Alison.

Too cool for school

2006-04-16T08:33:00.007-07:00

At the starting line

2006-04-16T08:33:00.006-07:00

This is some of the kids at the starting line, waiting for the word "go" so they could start hunting for eggs. K loved the young lady next to her and her neat power chair!

Easter Egg

2006-04-16T08:33:00.005-07:00

This is the Easter egg party again. K is coloring a yellow egg here. It was beautiful when she finished.

Hunting Eggs

2006-04-16T08:33:00.004-07:00

I thought this was an absolutely fantastic idea. The egg hunt was held on a basketball court because it's a much better surface for wheelchairs than grass. The bales of hay were there in order to lift the eggs up to a level where K could reach them independently. You can also see a cup there where they hid some eggs also. It was so nice for K to be able to get some eggs by herself.

Proud girl

2006-04-16T08:33:00.003-07:00

Her work is done. She has a basketful of eggs. Isn't she cute? (:

Bunny Ky

2006-04-16T08:33:00.002-07:00

Thanks to a local 13 year old girl, there was a special needs Easter egg hunt held nearby. This young girl has a little sister with Down's Syndrome which inspired her to hold the Easter egg hunt. All ages and disability level were invited. K took part in the festivities and thoroughly enjoyed herself. The picture above is the result of having her face painted. She also helped to make the bunny ears that we attched to her chair.

Another picture of Disney

2006-04-16T08:33:00.001-07:00

A beautiful nighttime picture of A, myself and the friend we took with us in front of Cinderella's castle on Main Street.

Yet more Disney pictures

2006-04-16T08:33:00.000-07:00

This is Alison sniffing a flower at the Animal Kingdom park in Disney.

Spring Break

2006-04-09T06:20:00.000-07:00

The picture is of A with a giraffe at Disney. You'll notice that she's wearing her mouse ears. It's a headband with a pretty multi-colored veil attached to it. She loves it. (:

Well, we just got back from Disney World. What fun! Thanks to my mother and father, we were able to enjoy the excitement that Disney has to offer. They promised A that when she was old enough they would take her for her birthday and they did. We saw Epcot, the Animal Kingdom, MGM and the Magic Kingdom. A loved it all, but her favorite rides were the faster ones. She loved the Rock & Roller coaster. My favorite was taking part in "Who wants to be a Millionaire?" I could play that everyday and have a blast! I almost got picked for the hot seat...my name was in the top ten, but not number 1.

My parents promised to take K too...when she's old enough. The good news for me is that I'll get to go again then!

I came home to a clean house (thanks to my husband) and a daughter who was thrilled to see me. I missed them terribly. It's hard to be away for so long, but it was worth it for A.

Again...I had pictures, but the memory card was ruined. I should be able to get some from my mom to add to this post, however. Keep an eye out.

Suit Therapy

2006-04-09T06:16:00.000-07:00

Now for an update on K. The great news for her is that she will be starting suit therapy this summer. We took her about a month ago to be evaluated for suit therapy and they said that her muscle tone was too much to work against. So, we went to the neurologist, put her back on her medication (Xanaflex) and took her back to be reevaluated last week. Much to our surprise, they noticed a big difference. They saw more "functional and purposeful" movement and they said that they would be willing to take her this summer. This is a 5 hour a day program for five days a week. She will attend for a month's time and wear a special suit called the "Therasuit". This is based on the original model called the "Adeli". If this program is successful for K this summer, then we will likely take her to do the Adeli suit therapy which we have heard is even more successful.

The therapist who worked with her anticipated that they could teach her to commando crawl and to sit with minimal assistance. That would be absolutely amazing! We would love for her to have some independent mobility and so would she. We'll keep you posted.

Fine Arts Night

2006-04-09T06:13:00.000-07:00

I had pictures to go with this also, but again...the memory card fouled up. These pictures were irreplacable so you'll just have to imagine.

On fine arts night, A sang with her grade level at a program. She also was assigned to play an instrument...some sort of xylophone type thing. The class sang three songs which were very cute. They did some movements to the music and I thoroughly enjoyed myself!

Even more special, however, was the display of the students art throughout the school. They had set up a true art gallery with red ropes, security guards and everything. Each grade level had imitated a masterpiece such as the Mona Lisa, Picasso art, etc. A's class painted an imitation of a whole bunch of cakes. Hers was lovely and she was very proud. She painted a pink/brown one.

All in all it was a fantastic evening and something we have looked forward to since Fine Arts night last year.

More Karate News

2006-04-09T06:09:00.000-07:00

I had a picture to accompany this post, but something happened to the memory card on my camera so I'll have to take some new ones.

Anyhow, A has earned all four stripes on her white belt. The black stripe was earned because she memorized the Songham Spirit of Taekwondo which is what they say at the beginning of every class. The yellow stripe is for self-defense. She has learned two self-defense moves which she loves to try out on her dad. The green stripe is for the basics. She had to learn a number of words and their subsequent movements such as "back-fist strike" and "twin low block". The last stripe, the red one, she earned for her one-steps. When my brother was taking karate we called these "forms", but basically it's a memorized sequence of punches, kicks, blocks, etc. She had to learn two of these to get her stripe. She will test for her next belt on April 27th and she's very excited. I'll keep you posted.

Proud Moment

2006-03-06T18:46:00.000-08:00

Today was one of the proudest moments I've had with A in recent history. Tonight, a man stood up in front of a group of other moms and dads. He asked me, while A was at my side, if she had been respectful and courteous. I was able to say "yes". Because of this, she earned her white belt in karate. In her life she has had done many amazing things, but this was one of the best. She was so proud of herself and was grinning from ear to ear. I knew she could do it and I'm so glad that karate is encouraging the attributes we're trying to teach including self-esteem, self-discipline, focus, etc.

Karate

2006-03-06T04:23:00.000-08:00

Well, A started her first week of Tae Kwon Do. She is loving it! She attends class 3 times a week for 30 minutess each session. She had to look up the word "self-discipline" and write ways that she would be more self-disciplined. She has earned three high-fives. When she earns five high-fives then she earns a star. She learned a few kicks, some stances and listening positions. I think it is a really going to be a positive experience for her all around. Pictures to come. I'll keep you posted on how it goes.

Pajama Day at School

2006-02-24T17:29:00.000-08:00

This is K and daddy. It was Pajama Day at their school. K and Daddy both had a great time reading bedtime stories and playing bedtime games. This is also K's first time in pig tails. Aren't they cute? Her one on one helper at school gave her the nightie which has a fairy on the front saying "I wish!".

A's birthday-continued

2006-02-24T17:15:00.000-08:00

This was A's new outfit that she got to wear to school on her birthday. For some reason, she really likes clothes. She certainly doesn't get that from me! I'd rather wear jeans and a t-shirt most days.

Anyhow, all in all, it was nice to be able to treat A special for a day. Sometimes, she feels overlooked because we have to do so much extra for K, but it's days like her birthday when we can let her know just how special she is to us.

At 7 years old, A is very smart, especially in regards to reading. She just discovered that she can read cursive about 2 weeks ago and amazed her karate instructor at an evaluation with that ability. She is funny and she likes to laugh and play. She is also extremely sensitive. She typically keeps one close friend rather than a whole bunch of acquaintances. She enjoys trying new things, but struggles a bit when she isn't able to do something easily. School work seems to come naturally to her and is almost too easy sometimes. She is developing a tendency to rush through because the work is not so challenging. A is a beautiful and special little girl who means the world to us. I cherish every moment with her and I love seeing her grow and mature. However, she's grown just enough where's she doesn't want to kiss me goodbye at the bus stop. She still runs to greet me at the door when I get home, though! She is a child of many talents and I can't wait to see which one she latches onto in the future.

A's 7th birthday

2006-02-24T17:05:00.000-08:00

A summed it up by saying that she felt like a princess all day long. While we opted not to do the traditional birthday party, we did make it a point to treat her all day long. We want to offer a special thank you to the family members who couldn't be there with her, but shared their money, gifts and love with her. She really does appreciate it. I thought I'd share a few pictures from her special day. These are her butterfly cupcakes that she got to take to school. Hers is the muti-colored one, of course! You can also see her new shoes which she was very excited to wear. Above is a picture of her dressed in her new nightie which she adores. Can't you tell? (:

5K

2006-02-19T16:33:00.000-08:00

I did it! This is my second 5K since I decided to take care of my body. I actually completed the race 15 minutes faster than the last time I raced. I'm committed to racing again with yet another improvement. My current personal record is 45 minutes (which may seem slow to many of you, but to me is a vast improvement). I'm so proud of myself for keeping up with this committment to myself. It will serve me well in the long run, I know.

Cutie Pie(s)

2006-02-19T16:09:00.000-08:00

We love this picture of K.

Grandma was the photographer and captured the sparkle in her eye.

She looks so grown up here, even though she's only 3!

A and K posing for the camera.

Blowing bubbles

2006-02-19T15:55:00.000-08:00

K and A

A is holding K's button for her.

This way, K can activate the bubble blower independently.

The bubble blower was a gift for Christmas from Mims and Granny.

It was definitely one of K's favorites.

Mom and Dad like it too because it's something K can do by herself.

Pappy and Uncle J

2006-02-19T15:38:00.000-08:00

A with her Pappy.

They had a blast playing UNO, even when Pappy "cheated".

A and Uncle J

They were making a princess out of beads and wire.

J was quite the brave soul to volunteer for this job!

Thank you Granny and Mims

2006-02-19T15:31:00.000-08:00

This is A with her Hello Kitty writing pad, crayons and stamps.

A huge thanks go to her Great Grandma and her Mims.

A's Twin

2006-02-19T14:39:00.000-08:00

A with her "My Twinn Doll".
She name her Sarah and loves her dearly.

It's official

2006-02-19T14:09:00.000-08:00

This is a picture of what our backyard will look like. It's a picture taken while standing where the front of the house will be. The trees will stay and there's a small creek back there too.

This is a picture of our lot sign. (: We're so excited and this really does make it official.

So we're moving! The house will be built and ready by late July or early August. Our greatest thanks go to Pat Matthews and her husband who were instrumental in making this happen for our family. They fought the battles so that we wouldn't have to fight them, they made phone calls so that we didn't have to make them, and they cared which is an amazing thing for people in this field! The first builder didn't work out because they weren't willing to make the accomodations to the house for a reasonable price. However, the second builder we approached has gone out of their way to make the appropriate modifications for K. Included with the building of the house will be the following: three foot doorways and hallways throughout, hardwood floors throughout (except in bathrooms and laundry room), rocker switches instead of toggle switches, lever handles on all doors, pedestal sink in the hall bathroom, basement and space for an elevator (within a closet area). After the house is ours, we will still have to ramp the front door and garage, put beadboard on one hallway and have the elevator installed. Hopefully, these three things can happen the first week we own the house. One of the nicest things is that the housing site is within 10 minutes of my parents' house. Thanks to God, Pat Matthews, and the housing company for their help to make this dream possible.

New house

2006-02-14T19:24:00.000-08:00

Well, we think we've finally found a builder that will do what we need to do to build us an accessible home at a reasonable price. I know that sounds unbelievable, but we're thinking it's true! More news to come regarding this when we have the final word. Please be praying that everything will go smoothly.

Valentine's Day

2006-02-14T19:21:00.000-08:00

Well, it was quite a Valentine's Day this year. First of all, there was the sugar cookie fiasco. After staying up to midnight, there were still only 12 finished Valentine's Day sugar cookies so we decided to keep them home and eat them ourselves rather than continue to try in vain to make more cookies! I forgot that you have to roll out the sugar cookie dough. Oops. That ruined the 1st dozen cookies. Then, we made a perfect dozen. Yeah! After that, I had to make more dough. The problem was that the dough was too crumbly so I added more milk. Then, it was too gooey. So I added more milk....you can imagine how this went. Needless to say, I eventually gave up.

However, the actual day was much better. K and A both enjoyed their school celebrations. A filled out her cards independently (although I did check behind her to make sure she didn't leave anyone out). K needed help, of course. My dearest hubby was very gracious this morning and brought me a totally surprising breakfast in bed. Then, I went out to my car and discovered yummy chocolates. Finally, he was planning to make my favorite dinner tonight (chicken parisien) which he absolutely hates.

My contribution to Valentine's Day was that I managed to get secure childcare so we could have a date last Saturday. This was especially nice because it was another mom of a child with CP. She watched our kids on Saturday and then I watched her daughter tonight so that she could go out with her husband. She told me that it was the first Valentine's Day in 7 years that they have gone out alone! I was so glad to be able to help with that. Hopefully, we can make the 'respite co-op' a regular thing. I really enjoyed it. I think she enjoyed it too and I know our husbands did.

A friend

2006-01-20T16:13:00.000-08:00

We're so proud of A. She has a friend and is going to her second ever sleep over. We don't really count the first one since she was right next door. It's a friend that is in her class at school and lives in our neighborhood which makes it especially nice. A is quite decisive and bold in contrast to this little girl who is soft-spoken, yet still stands up for herself. They make a lovely pair and we so enjoy seeing A blossom socially. Attached is a picture of them at the breakfast with Santa.

New Crib

2006-01-20T16:08:00.000-08:00

So, what do you think I'm talking about....hm? Could it be a house? No, not quite yet. We're working on it though. What I really mean is that K got a new bed to replace her crib. It's still very much like a crib in that it's enclosed on all four sides, so there's no chance of her rolling out. It's also solid on all four sides, so we don't have to worry about her geting body parts stuck between the slats any longer. She likes it because even though it's solid, she can still peek out through the non-breakable windows. We like it because the bed is high enough so that we don't have to break our backs bending over to change her or dress her!

Pictures to come.

Clay Aiken

2005-12-22T12:17:00.000-08:00

Oh my goodness! I got to meet Clay Aiken! It was absolutely incredible. My mom and I attended a concert locally, one in Columbia and one in Charlotte. It was a fantastic and enjoyable experience. What a voice he has! His Christmas music is so worshipful I almost felt like I was at church. When I met him, he autographed a piece of paper for K that says "K - Use your voice. Clay Aiken". We used the autograph, the picture of Clay and I (seen above), and some pictures of K and A to make a nine picture collage that now hangs in K's bedroom. She's not old enough to appreciate it yet, but one day she will.

Visits with Santa

2005-12-22T12:14:00.000-08:00

Both of the girls were fortunate enough to have special chances to meet Santa this year.

At A's school we attended a breakfast with Santa. While waiting her turn to sit on his lap, she made some beautiful crafts, got her face painted (an angel), and ate some Chick-Fil-A biscuits. Soon, it was her chance to see Santa and she was thrilled to tell him that she wants a doll and a dollhouse for Christmas this year. I think she's been a good girl so we'll see what happens on Christmas morning.

K and A both attended a FOCUS party where Santa was in attendance. He really took the time to greet each child individually. While K had screamed last year at the sight of Santa, this year she batted her eyelashes at him and smiled from ear to ear. I relayed her Christmas wishes to Santa and she had a lovely picture made (also still to come). We enjoyed spending time with the children there, doing crafts, playing games and listening to pretty music.

Thanksgiving

2005-12-22T12:09:00.000-08:00

Okay, so we're almost to Christmas but I wanted everyone to know we didn't forget Thanksgiving. I have some pictures from our first Thanksgiving as a family (without extended family). It was quite a change, but nice and relaxing.

A is thankful for the world.
K is thankful for her new chair so she can sit at the table with the family.
Dad is thankful for his family.
I am thankful for the many blessings in our life and looking forward to a new year, a new home, and sharing with others.

Fashion Show

2005-11-19T14:57:00.000-08:00

This is the third year that A and K have participated in the local FOCUS (Families of Children Under Stress-for families of children with special needs) fashion show. The theme this year was Pure Imagination from Charlie and the Chocolate Factory. Everyone who went to the show received a candy bar (with the kids names on each one). The girls recieved a top hat and candy, of course. The ballet dancers were fantastic and they had a live pianist this year with a singer. It was beautiful and the girls were lovely of course. They enjoy it more and more every year. These are some pictures of them in their outfits.

Meeting with a special friend

2005-11-19T14:43:00.000-08:00

We had an opportunity not long ago to meet another child who is similar to K. His mother and I met from chatting on anonline board for children with HIE. It was a pleasure to meet her and her precious son. We went to the Yellow River Game Preserve which is a beautiful home to injured animals. It is an amazing experience where you are able to hand feed animals that you might never have a chance to see in the wild like deer. The kids enjoyed it. It was a beautiful day and a wonderful and rare opportunity to meet another family who can say that they have "been there and done that". Here are some pictures from that special day.

Halloween Pictures

2005-11-19T14:29:00.000-08:00

Well, I finally got the Halloween pictures back. A was a fairy princess (she's the older one in a blue dress with fairy wings). K was The Little Engine That Could with a hand made costume. Her dad and her sister made it for her and she was the highlight of the entire neighborhood. Little boys were actually chasing her down the street asking her for a ride. It was so cute. Unfortunately, K had a very bad ear infection at the time and was in quite a foul mood so she didn't give any smiles for the pcitures, but we think she's precious anyway. A, of course, hammed it up for the camera.

Trans-siberian Orchestra

2005-11-15T18:35:00.000-08:00

Wow...that's all I can say. The only negative to their concert this year was the three hour drive because they weren't playing near us. My dad and I went to Birmingham to see TSO and it was incredible as always. The light show was even better than the last time we went and the music was phenomenal. We even heard some new music which was great fun. I can't wait until they start performing Bethoven's Last Night. Maybe this summer! We can hope. A special thanks to my dad for an enjoyable trip. Without him, it wouldn't have been nearly as much fun.

Barbie

2005-11-07T18:31:00.000-08:00

A (on the left) and K (on the right) with Barbie at Parisians. They were shopping for clothes to wear at the upcoming fashion show. They are very excited despite the look on K's face. She was feeling a bit under the weather that day. A was thrilled to meet a real live Barbie. Parisians treated the girls like true princesses and even gave them a goodie bag. Pictures from the fashion show will be forth coming.

Relay For Life

2005-10-28T18:47:00.000-07:00

Thank you to all my family and friends who have supported me in the effort to raise money for Relay for Life (supporting breast cancer research through the American Cancer Society). I will be attending the walk tomorrow. A group of friends and I are meeting at 6:15...yes you read right and that's on a Saturday! We sign up at 7:00 and the walk begins at 8:00. They expect us to be finished with our five miles by about 10:00...11:00 at the latest. Then, I will be meeting my husband and children to do fashion show shopping. Needless to say, it looks to be a full morning. Thankfully, we'll gain an hours sleep the next night.

Halloween Preparations

2005-10-28T18:44:00.000-07:00

Well, we're preparing for Halloween. It's only two days away and we still don't have costumes together.

A is going to be a fairy princess which suits her perfectly. She'll be lovely as always.

K, on the other hand, is goin to be the Little Engine that Could (if daddy CAN get her costume finished in time...we know he can, we know he can!). Her costume is still in the "imagination" stage.

We did get to carve a pumpkin, roast pumpkin seeds and finally enjoy some cool weather which has been a very nice change of pace.

We'll let you guys know how everything turns out.

Wild about You!

2005-10-28T18:42:00.000-07:00

Recently, we spent a day at the zoo. Our purpose in going was to meet some other families of children with HIE injuries. Many of the families had to cancel last minute, but one family was able to came and for that we were so grateful. We had the opportunity to meet sweet Kn, her brother C and their mom and dad who were absolutely precious! The weather was beautiful and the animals were active. A fun time was had by all. K especially enjoyed meting a new friend. Kn enjoyed all the extra attention A gave to her. As for us, the parents just enjoyed chatting with other parents who can truly understand. We hope to meet with them again soon...and perhaps meet some other local HIE families too.

Super Stars

2005-10-11T18:29:00.000-07:00

A had a great day at school today so I just had to share. She's very proud of herself because she was videotaped reading her book review. She did an excellent job and has another book review ready for this week. She got 15 problems correct this week on her Big 20 test (last week she got 14 right so she's still improving). Her butterfly stayed on the flower (read: her behavior was good!). It's amazing the turn around since the beginning of school.

Both of the girls are going to be in the annual FOCUS fashion show. This will be their third season and they're both thrilled! We love to dress them up and show them off. It's a great fund raiser for FOCUS also.

Marching Chiefs

2005-10-11T18:10:00.000-07:00

Thanks to my mom (arranging the trip) and my cousin (getting the tickets for us) I was able to attend my 1st Florida State University football game since my graduation over nine years ago. I saw the Marching Chiefs play which was the highlight of the trip for me since I used to be in the band. I even got to sing the Hymn to the Garnet and the Gold. Of course, we won (although it was touch and go for a while). My husband is such a dear. He watched the children so I could go. I can't wait to go again. Hopefully we can make this trip a yearly thing.

School Happenings

2005-10-04T16:41:00.000-07:00

Alison has been making big improvements also. Every week she takes the Big 20 test. This is a math computation test with 20 problems that the students are expected to complete in 20 minutes. Alison completed only 5 correctly the first time she took a Big 20 test. This week, she completed 17 problems and got 14 of them right! We are celebrating her succeses. She also no longer needs a chart to track her behavior at school because she is doing so well. She made a color wheel at school this week and she is very proud of it. Report cards come out next week so we'll see better then just what we still need to work on.

As for Aaron, he's loving his work and is very pleased there. He had to miss one day of school due to Kyleigh being sick and you would have thought the world came to an end because they missed him so!

Myself, I'm very busy. I have meetings at least 2-3 times a week either before or after school. Being in charge of the Jr. Beta club is a full time job also especially since we're doing fundraising at this time. Quite frankly, I'm exhausted, but I feel like I am accomplishing lots with my students.

Vanguard

2005-10-04T16:35:00.000-07:00

Well, it's official. K got her first real communication device. It's absolutely amazing and I can't wait to see it in action. The general idea is this: K wears a sticker on her forehead (about the size of a pencil eraser) that has some sort of computer magic built into it that sends and receives information to the communication device. Basically all K has to do is look in the direction of the picture/word that she wants to choose and it will speak the word out loud. We have it set at eight words on a page right now. On the front page it says the important things like "I want" or "I need" or "My name is". Then, when she chooses "I want" it will direct her to another page of choices. I'm not sure this makes any sense at all, but it's just great. I can't wait for her to realize what a world this will open up for her. She also went to the bathroom for the first time at school last week so she's well on her way to mastering that skill. We're pleased with all of her progress.

Potty news!

2005-09-24T15:47:00.000-07:00

Wow...I never thought I would be writing this post today. You see, today was K's first time on a potty at home. She is three years old which is a little late to be starting potty training, but with all of K's other problems, this was the least of our worries. Since school was cancelled for Monday and Tuesday, we decided to put this long weekend to good use. After giving K 8 ounces of pediasure, I sat her on the potty. Low and behold! She went! We know this is just a sign of more great things to come.

Unexpected Closings

2005-09-24T15:11:00.000-07:00

Wow! School is closed. I found out just as I was stepping foot outside my school building on Friday afternoon. The principal came over the intercom with a special announcement. The good news is that we have an extra long weekend. The bad news is that the reason why is because the govenor is afraid we may have a gasoline crisis. Also, we have to make these days up later. We're basically using two snow days which is a bummer. The kids are thrilled, of course. I will be using the long weekend to start potty training K and to let A write a journal entry for a local contest. It should be exciting!

Phantom

2005-09-24T15:09:00.000-07:00

My mom took me to see Phantom of the Opera today! Wow. It was absolutely amazing. I had seen it once before as a teenager, but to see it as an adult was a totally different experience. I'm so grateful and I had such a wonderful time. Thanks mom!

Moving and Shaking

2005-09-22T03:58:00.000-07:00

In the past month or so, K has learned a mode of locomotion. It isn't efficient or quick, but it's a way that she can move. She pushes with her heels while lying on her back. Then, she straightens her legs and PRESTO...she moves backwards. Her hair has a spot on the back that's matted because she's enjoying practicing so much.

Anyhow, last night during dinner, K was lying on the floor because she had eaten prior to our official dinner. We had just sat down to dinner, had our prayer and we looked up. K wasn't where we left her! She had already managed to scoot down the hall in her funny little way. About five minutes later, she had managed to get herself into the bedroom and was knocking over a pile of books lying on the floor. After that, she scooted herself over to a light socket and was pulling out cords. It's the first time in her three years of life that I can remember having to tell her "NO" for her own safety! What a milestone. Her favorite game of all, however, was discovering a canister of coins. She could knock it down and it made a great noise. Then, A would stand the canister back up so she could knock it over again. How fun!

It's so exciting to see K progress through life. She may never crawl, but at least in this way, she can get from place to place and get into trouble like every other three year old in the world! (:

Improvements

2005-09-17T13:30:00.000-07:00

Despite our initial concerns about both A and K at the beginning of this school year, they are both doing remarkably well. A had a great week, according to her teacher. We are so pleased that she has made choices to be a good listener, a good friend and have a positive attitude. She also completed some testing this week that will hopefully show others her ability to be successful. We're already convinced!

K also started school this year and we have been very concerned about how she would do. We are pleased that she is continuing to be successful there. Our next big projects to tackle are toilet training and using her new device (which hopefully will be here within the next week or so). Once she masters these skills, we'll be able to move on to even bigger and better things.

Accessible Housing

2005-09-17T13:23:00.000-07:00

Thanks to FOCUS, my mother and I went to visit some local housing that was made to be handicapped accessible. It was a very eye-opening and enlightening experience. There's so much to consider. Some of the things we noted that we will likely consider when building our house are the following: wide doorways (at least 3 feet), lowered light switches (the rocking kind, not the toggle kind), open space, larger garages, ramps into all entrances and even elevators in the house! All of the homes we saw were beautiful and they all took so many different things into consideration depending on the needs of our child. One thing I did learn is that we need to start looking at floor plans NOW if we want our house to be ready by summer time. I'll keep you posted on this issue in the near future.

Weekend of Surprises

2005-09-10T14:52:00.000-07:00

On Friday we got two messages and both were full of good news. The first message said that K's communication device (the Vanguard) has been approved and paid for by our private insurance company. We are shocked and amazed since this is the same insurance company that did not pay a single penny for K's first wheelchair. Anyhow, now it just has to be ordered and shipped so we're expecting its arrival within a month! Yeah!

The second message was an invitation from our local FOCUS group inviting us watch Sesame Street Live. We agreed (of course) and were treated to free parking and a suite in which to enjoy the show. We truly felt like VIPs. It was a great event and K even invited her friend, J.J. to come since we had an extra ticket. There once was a time when we thought our lives would never be "normal" again and now we find ourselves doing typical things...we just do them in a non-typical way. It works for us!

Possible new job: husband

2005-09-06T16:17:00.000-07:00

DH started at a new school this year so that he could take K to and fro without having to worry about her crazy bus schedule. Well, he's done such a great job that they want him to interview for a paraprofessional position. We're confident that if this is the job he should be doing that he will receive an offer. He'll probably know something by next week. We'll keep you posted.

K's communication device

2005-09-06T16:13:00.000-07:00

K has borrowed a communication device from our school district called the Springboard. This device can be activated in numerous ways, but K is learning to access it via a head switch mounted on her wheelchair. Basically, the device scans row by row. When the device has reached the row with the picture she wants, she activates the switch. Then, it scans picture by picture. When it reaches the exact picture of the object or activity she is wanting, she activates the switch again. It's a complex process and is requiring a great deal of effort for teaching. Well, the problem of late is positioning. She is limited on where she can use her device because it needs to be mounted and right now her wheelchair doesn't allow for the mounting. We are currently looking into alternate positioning and I'll keep you posted on how that goes. Hopefully, we can communicate with her school speech therapist to come up with some options that might work for her.

A's first baseball game

2005-09-06T15:55:00.000-07:00

On Labor Day, my dad gave me his tickets to the Braves' game. This is pretty impressive because he really likes to go, however he has been occupied with relief efforts for Hurricane Katrina refugees through the Red Cross. Anyhow, I decided to take A. Turner Field is such a nice place for a child and she really enjoyed it. We visited the newly opened Tooner Field where she got to practice being a pitcher and even run the bases. She learned to crack open peanuts even though she didn't like to eat them. It was a nice way to spend an afternoon and the Braves won! Thanks to my dad for his generosity and thanks to my special little girl for putting up with my non-girlie afternoon. I know she would have rather been playing dolls or dressing up like a princess, but she went with me anyway and I'm so glad she did.

The here and now

2005-09-04T08:08:00.000-07:00

Wow...things sure have changed a lot in the past month. I got a new job (previously, I was an itinerant teacher and I finally was awarded a classroom position which is fortunate considering the cost of gasoline lately). DH got a new job as well. He is working at the same school with K. He moved so that she wouldn't have to ride the bus which was coming at 6:15 in the morning. The whole family was suffering with the early schedule so it has worked out perfectly that he can take her in the mornings and we're all a lot happier in the long run. He's also in school to finish up an early childhood education degree. He took a semester off over the summer, but he's planning to start back soon.

A started 1st grade. Her teacher has high expectations for excellence in academics and behavior. Academics has not been a problem for A...however, she did have a very rough start to the year in the behavior department. Things seem to be improving however and we're really working hard on treating others how she wants to be treated and speaking respectfully.

K started school also. She rode the bus for about a week until we decided that none of us could stomach waking up at 5:15 in the morning so that she could get on her 6:15 bus. Ick! Her teachers adore her. She has a classroom helper three days a week to facilitate her involvement in the class. She is learning to use an adapted toilet. She has a communication device that she is practicing using row/column scanning with a head switch. She enjoys playing on the computer, especially interactive games. She is working on learning to feed herself finger foods too. Everyday we hear more and more sounds that we suspect are words. It will take some time to confirm these "words" however. We are very proud of all the progress both of the girls are making.

We're praying for all the victims of Hurricane Katrina and even here in Atlanta are getting a lot of fall-out from the storm. Gasoline is at a premium. When you can find it, the prices are ridiculous. We are also getting lots of refugees to the area. Each of us are doing what we can to assist in this effort. I am sponsoring the Jr. Beta club this year and we are going to do some community service projects to help the refugees, the victims and their families.

K's history

2005-09-04T07:58:00.000-07:00

K's history is a little more challenging and lengthy, so I will try to keep this brief. K was a typically developing baby right up until labor/delivery. My uterus rupture during labor at 40 weeks gestation and because of this, K was without oxygen for an unknown period of time. She was born with no heartbeat and no respiration. She was revived and came home with us after a short 10 days in the neonatal unit. She had been on a vent for 24 hours, nasal canals for 24 hours and had feeding issues. When she came home with us, we had no idea whether there would be long lasting results to her traumatic birth. At about three months old, we started noticing that she didn't move in a normal way, but it wasn't until she was well past one year old that she received her official diagnosis of cerebral palsy. Fast forward to the future past countless therapies, doctor visits, tears, and laughter to the present. She is now three years old. She still doesn't sit up independently. She still is unable to grasp objects accurately. However, she is able to communicate with us through eye gaze and she's even starting to say many things that we interpret as words. She understands everything and doesn't miss a single trick. She manipulates everyone with a pouting lip that is famous all over her school. She is learning to use a speaking device that she activates with a headswitch. She has a teeny wheelchair that she can move short distances and she can walk in her gait trainer when the mood strikes. She knows most of her colors and is starting to learn her ABCs. We're hopeful that she can be in a regular kindergarten class by the time she is 5 years old. She currently has four therapy sessions a week and typically goes to see at least one "specialist" doctor per week. Our schedule is hectic as both my husband and I work full time, but somehow we manage. We are so glad that K is here with us and wouldn't have it any other way.

A's history

2005-09-04T07:48:00.000-07:00

When we deicded to have our first baby, we were very excited. I quickly became pregnant. During a routine ultrasound, it was discovered that the amniotic fluid was low. Something was wrong; very wrong. At 20 weeks gestation, I gave birth to a still born baby, Lucas Christian. We were absolutely devastated. It took some time before we were ready to try again. Everyone that we knew prayed and God sent to us a beautiful and perfectly healthy little girl, A. We have watched her grow and nurtured her. She is a strong-willed and independent spirit. She has a heart of gold. Her teacher compliments her often on her reading and writing skills. She is a very smart little girl. We have always been proud of her accomplishments. Having a sister with cerebral palsy has changed life for her. We wanted to have another child so that she would have someone to play with. Instead, we gave her an audience; someone to watch her antics and laugh uproariously, someone who is entertained by games that adults find tedious, someone who wants to be just like her! Whenever anyone asks about K's favorite toy, we always tell them it is her sister, A.

Introduction

2005-09-04T07:28:00.000-07:00

I decided to write this blog so that our family (which is rather scattered) could feel a little more connected to our day to day life. For those of you who don't know us, however, we are a family of four. My husband is my rock and my strength. Our family would not be complete without him. I am mom. My husband and I have been married for nine years and have been through a great deal in that time. Our life, indeed, has been a journey. We have two beautiful daughters; A age 6 in 1st grade and K age 3 in PreK. A is a typical six year old (for the most part). She loves pink and is a "girly-girl" in the truest sense of the word. A is strong willed, intelligent and fun to be with. She's had a rough start to her school year this year. Transitions are difficult for her and there have been a lot of transitions this year for our family. K started school this year too. She has moderate to severe cerebral palsy, but is also extremely intelligent and has a smile that lights up the world. Everyone she meets falls in love with her instantly.

During this blog, I am hoping to chronicle the story of our life...especially in regards to K and how she has changed our family life.