The Foley Four

Happy 5th Birthday Max!

2011-11-14T20:09:00.006-06:00

I'm FIVE!

Keep rockin' on!

Jam Session

Let's Play Ball!

2011-07-28T20:29:00.011-05:00

Since Max likes to watch hours of Brewers on TV. . .

And check out his batting form in the mirror. . .

We decided to sign Max up for T-ball! We knew Max would need some extra help at his games and mentioned to his Early Childhood teacher that we were looking for a "buddy". She happened to be free and was happy to help Max out. And Max was excited to get to spend time with Marsha over the summer.

We made it to four out of the six games. Each week Max learned a little more about the game and what he was suppose to do.

By the end of the season, he would sit and wait for his name to be called before he would get up and head for the tee. And Marsha didn't need to help out. The first week she had to sit next to him to make sure he sat and didn't get up and run on to the field.

I enjoyed seeing Max get pats on the head by the other kids. . .

and high fives after the game. . .

Max at bat!

Ava played coach pitch after Max's games.

And she loved her coach.

Polar Plunge 2011

2011-02-20T12:51:00.010-06:00

One Saturday, we took the Polar Plunge to raise money for Special Olympics Wisconsin. Team RTS raised over $7,000 to help athletes with cognitive disabilities REACH THE STARS while participating in the Special Olympics. Thanks to all who made donations and came to watch this great event. We appreciate your generosity.

Team RTS

It is great having support from friends and family.

Pre-jump group shot.

Getting lined up. . .

We are ready for. . .

The PLUNGE!

Freezin' for a Reason . . .

Max and his Music

2011-01-18T16:44:00.002-06:00

Max loves listening to music on his IPad. I wish he would enjoy communicating on it as much!

Christmas Eve Day

2010-12-31T07:56:00.004-06:00

We had a great Christmas Eve hanging out with just the four of us. John usually has to work on Christmas Eve, but since Christmas fell on a Saturday he was able to have off. It wasn't too cold out and we just got some fresh show, so we decided to try taking Max sledding. And he enjoyed it! There are not too many things Max is overly excited about doing. He is a very cautious little boy. It was nice to see him have fun. He liked being pulled in the sled more then going down the hill. And if the sled sat still for too long he would sign "more". And Ava loves sledding! It was nice to have something the four of us could do together instead of one of us staying with Max and the other going off with Ava.

After sledding, Ava and John made a batch of cookies for Santa. We previously made cut out cookies, but they happened to disappear somehow.

New Bed

2010-12-12T08:37:00.003-06:00

Last night we put together Max's new bed! He was so excited to see his new bed in his room. And bedtime went a lot better than expected! He didn't nap all day, which helped. He settled himself down and went right to bed and slept through the night. I was worried that he would wake up and start wandering around the house. His head was at the foot of the bed when I checked on him in the middle of the night. He never once fell out! I am interested to see if tonight goes as well. He doesn't nap during the week and is ready to go to bed at bedtime. So I do think the bed will work well for him. And I think that he is really proud of his Big Boy Bed!

(Ignore the pink sheets. He will be getting sheets for Christmas.)

Happy 4th Birthday Max!

2010-12-01T16:24:00.013-06:00

Max turned FOUR on November 15th! I keep telling myself I need to get a birthday post out here before Christmas arrives. So today is the day!

We celebrated Max turning four by having family over for a dog themed party. Max just loves being around dogs! And no, we are not getting him one.

Papa Dave made Max's cake. This is my favorite cake that Dave has made so far.

Max eating from the dog bowl.
So happy to be four!

Max hanging out in his room with his cousins.

Life doesn't get much better for Max. Watching Signing Times while jumping. The trampoline was a gift from us to Max.

The party group!

Opening gifts! This was actually the only gift Max would open. After this one he was overwhelmed with the noise of the party. He wanted to take a break by sitting in his bed for 45 minutes. He came back out for the candles on his cake though!

Max interested in the sparkler candle.

After school on his actual birthday. Partying wears him out!

I posted the next couple pictures because this is the first birthday of Max's I feel I am starting to make a gap from the fears and worries I had during his first few years of life. His health is so much better now. We are not constantly running for appointments. I was talking to Max's pediatrician at his four year check up this week and told her I was kind of anxious not having so many appointments anymore. The specialists that have been following him are telling us that they don't need to see him for another year or they don't need to see him anymore AT ALL unless something comes up. His peds told me now that his physical health has improved so much that now I should be focusing that time on making sure he has all the services to reach his full potential developmentally. She told me this is a common transition for parents. Yes, I know everything isn't going to be easy from here. Our main struggles now are his feeding and communication. I think there will always be struggles. But on his forth birthday, I feel in a good place.

Big news! We got Max an IPad with Proloquo2go. He mainly likes to use it at school for now. I know we should be consistent and use it at home more. At home he seems to like to listen to music and look at the pictures we downloaded for him. John programmed a couple buttons for his birthday party. In this video he is telling his uncles that it is time to eat tacos.

Happy Thanksgiving

2010-11-24T19:35:00.001-06:00

Happy Halloween

2010-11-03T12:57:00.015-05:00

Earlier in October on an 80 degree day, we went to pick our pumpkins. It didn't seem right working up a sweat walking out the to pumpkin patch. Since it was such a nice day, there we tons of people who had the same idea. Ava and John went through a haunted house they had at the farm. Ava said it was AWESOME and wants to come back next year.

Ava with our keepers.

Max posing for pictures while John and Ava were in the haunted house.

Our finished masterpieces : )

Each year out town celebrates the anniversary of a UFO sighting that happened in our town over 20 years ago. Believe what you want, but it is quite the festival.

Family came and went to the parade with us. John had to work, so he missed out on the fun.

Max really enjoyed the parade. He would pick up the candy and throw it back. It was too funny. It was nice to see him enjoying himself until a car that was in the parade backfired in front of us and then the fire trucks came though. That was the end of Max enjoying the parade.

Ava was on the float for the day-care Max and her go to.

Max lookin' cute!

It has become a tradition for Grandpa and Grandma Foley to come to our place for Trick-or-Treating. Dave always dresses up and takes Ava out Trick-or-Treating. And if he is lucky, he scares a kid or two.

Who are these people!

GI Appointment

2010-10-17T09:20:00.001-05:00

On September 21st, Max had a GI appointment. At the appointment he weighed 25 pounds and was 2' 11". We were shocked that he was 25 pounds! Usually he hovers around 22-23 pounds. We thought he was feeling a little heavier. At the appointment we talked about removing his G-tube in a year. We are going to see if he can make it though cold and flu season without having to use his tube. We were so excited to hear such great news! When Max had surgery for his G-tube in April of 2007, we never would have thought that he would possibly have it removed before his 5th birthday. We thought he would have it for life! And yes, progress seems slow. But when you look at the big picture, he has accomplished a lot since he was put on a feeding tube at three months old and being NPO. I have to remember this when I get so frustrated with his eating! Currently he gets about 90% of his calories from drinking Kid Essentials Boost formula and he eats about 10% of his calories.

We also tried to take him off his reflux medication. About a week after we took him off the medication, his appetite started to decrease, was extra fussy, and grinding his teeth again. We put him back on his medication and seems to be back to himself!

School Pictures

2010-10-17T09:00:00.002-05:00

Ava - First Grade

Max - Early Childhood

Ava's 7th Birthday

2010-09-26T09:21:00.005-05:00

On September 23rd, Ava turned 7!! She had quite the birthday this year with lots of celebrations!

She had a friend birthday party at the gym she takes gymnastics. When you get nine girls together, it gets LOUD. They all and a great time and wore themselves out in the gym.

She also had a party at home and celebrated with lots of family.

Papa Dave made the cake again this year! Ava designed it and he made it just the way she wanted it. When Ava was designing it, I thought, how is he going to do that?!? Should never doubt Papa Dave!

Ava with her gift from Max.

Ava with her new IPOD! I thought she would be attached to it 24/7, but she told me she has been too busy to play with it a lot.

At a Brewer game on her actual birthday.

Grandma and Grandpa Ragatz also came along.

She had fun watching for her name on the score board.

Snacks at the game are the best!

Happy Birthday Ava! We love you!!

Field Trip

2010-09-26T09:20:00.003-05:00

A couple weeks ago, Max has his first field trip of the year to an apple orchard. His teacher told me he had fun walking though the garden and pointing at different things and having the teacher sign what each thing was. I love the beautiful colors in the picture!

GI Appointment

2010-09-26T09:19:00.004-05:00

Buds

2010-09-12T08:45:00.003-05:00

We spent Labor Day weekend at my mom and step-dads cabin. On the way to the cabin, Max signed "Dog" the whole way there. He was so excited to see his buddy Tucker! Max followed Tucker around all weekend and couldn't get enough of him. And Tucker didn't seem to mind Max being his shadow for two days.

Follow-Up to First Day of School

2010-09-01T18:59:00.003-05:00

About 6:45 while we were eating, Max couldn't stay awake!

Back to School

2010-09-01T13:45:00.006-05:00

Today was Ava and Max's first day back to school! Ava was super excited! She was up before 6:00 this morning bouncing off the walls. I hope 1st grade is everything she hopes it to be.

Max headed back to Early Childhood. He has a smaller class size this year with only four kids in his class. Last year, he had nine kids in his class. The class size may change as the year goes by with new three year olds coming in. He seemed excited to be back although he got to be in the classroom over the summer for Extended School Year. He will be going to school from 12:15 to 3:05 Monday through Thursday. Last year we had him start at 1:00 to get a short nap in after lunch before heading to school. This school year we are going to try going without a nap. He is not great at taking naps, so I am hoping it will work well for him without a nap.

Max had another big change this week. He moved up to the three year old room at day-care. I am hoping he will enjoy it and learn lots from the three year olds. The room is really big so he will have lots of room for fun. He looks like a little peanut in the room with all the three year olds. He is with a teacher he previously had, so I think the transition will go well for him. His teacher at day-care is going to go to Max's next IEP in October with us so we can keep consistency between school and day-care.

Dessert Throw Down

2010-08-08T14:44:00.004-05:00

We recently had a little friendly competition at work dividing our area in to two teams. Everyone brought in their favorite desserts and we invited others in the company to donate money to enjoy the desserts and vote on their favorite. Each team chose a charity they wanted to raise money for and and the winning team would be able to donate all that was made to the charity of their choice.

Unfortunately, I wasn't on the winning team However, the winning team choose to raise money for the Special Friends Foundation. I was so touched by their thoughtfulness. I am fortunate to work with such a great group!

Happy 4th of July!

2010-07-04T10:02:00.002-05:00

Ava and Max with their papa.

Ava wanted to take a "funny" pose. I think it is more sassy than funny!

Introducing Brooklynn

2010-06-27T08:57:00.002-05:00

I added a link to my blog to add a new little RTSweetie's blog. She is a five month old beauty. Check out her blog.

Run For Fun

2010-06-26T10:59:00.012-05:00

During the summer, our town has Run For Funs for preschoolers through 8th grade for six weeks. They are so fun to go and so cute to watch. The school does a great job putting on the little meets and they get a good turn out. Everyone that participates gets a ribbon for each event they are in. Both Ava and Max enjoy participating. Max loves being on the track and watching the kids run by. He gets so excited. And Ava looks forward to going to them too and, I must say, she is pretty fast!

Max Running. . .

Ava Running. . .

Ava Long Jumping. . .

Max with ribbon. . .

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Extended School Year

2010-06-13T13:47:00.003-05:00

Max qualified for the Extended School Year through the summer. He will receive Occupational Therapy, Speech Therapy, Physical Therapy, and Early Childhood. His schedule is a reduced amount of time of what he gets through the school year. He has a couple weeks off and then he will start up at the end of June. He will be enjoy being able to continue to go to school through the summer.

Ava's Last Day of Kindergarten

2010-06-13T13:36:00.002-05:00

Ava's last day of Kindergarten was on Wednesday, June 9th. I was worried that she would be upset since she enjoys school so much, but she seemed excited for summer to be here. On Monday, she will start summer school. She will go to summer school Monday-Friday for four weeks from 8:00 to 12:00 and spend her afternoons at the day-care center that Max goes to. She signed up for Arts & Crafts, Sign Language, and Footsteps to First Grade for her summer school classes. Getting on the bus for the last time as a Kindergartner. . . John picked Ava up for school and took her golfing for the first time. They had a good time and Ava said she beat John!

Wordless Wednesday

2010-06-02T11:06:00.002-05:00

(click on picture to enlarge and look what is in Max's hand)

Hoopin' It Up

2010-06-02T09:55:00.006-05:00

John has been wanting a basketball hoop in the driveway for years now. . . and we finally put one up at the beginning of May. John's dad, Dave, helped John install the hoop and since it has been up the kids and John have been enjoying it.

John gives Ava basketball lessons and she looks forward to having them. They even drew the court with sidewalk chalk.

Max's "thing" lately is a ball. He always has a ball bouncing in his hands. Max seems to pick one thing and is really attached to it for awhile before moving on to something else. Prior to the ball it was his rocking police car. He will still rock, but very rarely now.

Here are a couple videos of the kids on the court. Check out Max's defense in this video.

Future Harlem Globetrotter!

A Glimpse of Max's Day at School

2010-04-03T12:30:00.005-05:00

Waiting at day-care for the van to pick him up.

It's here!

His Speech Therapist met him at the van and Max went with her for his first 20 minutes of the day. I didn't get a picture with Max and his ST. After speech therapy, Max went to his Early Childhood classroom. Here he is working with his Early Childhood teacher.

Then it was off to gym class. Which Max loves and really participates in. He loves gym class, but music class is his favorite.

Max's OT met up with Max in the gym and worked with him. She is helping him play duck, duck, goose.

In this picture, Max is waiting in line for his named to be called.

After his session with the OT, he went back to the classroom for snack and then met up with his Physical Therapist. She took him outside since it was a beautiful day. They swung and worked on climbing on the playground equipment.

He does a lot in a two hour period. They really keep him moving! He seemed to really enjoy it there. Which made me so happy to see!

Two Down. . .

2010-04-03T12:13:00.005-05:00

On March 23rd, Ava lost her first tooth! She was so excited since it is so cool to have a missing tooth in Kindergarten. We took the kids to the dentist and she asked the hygentist to pull it. It was REALLY loose!

Here is her first gapped tooth picture!

With dollar from the tooth fairy. . .

On April 2nd, she lost her second tooth and was equally excited!

Signs, Signs

2010-03-05T08:02:00.004-06:00

Max loves, loves, LOVES watching Signing Time. As soon as I pick him up from day-care, he is signing "Signing Time". He has picked up so many signs from the show that it amazes me. I need to sit down and write down all the signs he knows. Here is a little clip of some of his signs.

2010 Polar Plunge

2010-02-25T14:32:00.010-06:00

On February 20th, myself, John, and the rest of Team RTS - Reaching The Stars took the Polar Plunge to benefit Special Olympics Wisconsin. Our team raised over $7,000! Thank you so much for the donations!! It is greatly appreciated! We look forward to making this an annual event. The atmosphere at the jump is so exciting and rewarding. And Yes, the water is as cold as you think it is going to be!!

Click Here to watch a You Tube video of the jump.

Team RTS. . .

Waiting in line to jump. . .

THE PLUNGE!

Transition Strips

2010-02-13T07:44:00.005-06:00

Max is a rocker! He loves to rock by either standing on our rocking chair or on his police car. But he is picky where he rocks on the police car. He always has to be rocking over two surfaces. He likes to rock between our kitchen and living room at home. And if we take his rocker to other places, he scopes out two surfaces to rock on. It is always over a transition strip. I need to find a bigger rocker for him. He gets a rockin' and has tipped over his police car. Any suggestions?

Happy Groundhog's Day

2010-02-02T18:01:00.002-06:00

Polar Plunge

2010-01-18T11:00:00.009-06:00

On February 20, John, myself, and the rest of team RTS - Reaching The Stars will be Freezin' for a Reason when they take the Polar Plunge for Special Olympics Wisconsin.

During this event, participants will raise pledges then plunge into Wisconsin's FROZEN Lake Monona. All money raised from the event will provide funding for nearly 10,000 athletes with cognitive disabilities in Wisconsin so they can continue to REACH THE STARS!

Please help me reach my fund raising goal by pledging to me online using the link below or make a cash donation. Checks should be made payable to Special Olympics Wisconsin.

We would LOVE for you to join Team RTS and JUMP and enjoy the day with us. Use the same link to register. Last year we had so much fun, we want to make this an annual event. Details will be following regarding when and where to meet on the day of the jump.

Thank you!

https://www.specialolympicswisconsin.org/pp10/pledge.asp?id_p=1405

Here are a couple videos of Max practicing for the Olympics!!

Scrapbook Weekend

2010-01-18T10:59:00.005-06:00

This past weekend, I spent the weekend in a cabin with a bunch of girls scrap booking, eating, sleeping in, and watching movies. It is always great to get away for a weekend! Here are pictures of the pages I finished in the kids' scrapbooks.

*Click on pictures to enlarge*

Ava's First Snow Day!!

2009-12-09T11:07:00.006-06:00

Today was Ava's first snow day! We got well over a foot of snow. . . it looks like a Winter Wonderland outside. She was excited to get her coat and snow pants on this morning to play in the snow. She had her first snowman built by 7:45 this morning. She just went out for her second trip outside to make another snowman!

Max watching Ava play outside. He would love it outside for a little bit, but decided to keep him inside since he woke up snotty and sneezing.

We've Been Elfed!

2009-12-09T08:13:00.003-06:00

Ava loves these things!!

Send your own ElfYourself eCards

Hydrocele Surgery #2

2009-12-03T14:11:00.005-06:00

On Tuesday, Max has a hydrocele repair on his left side. Last year, his right side was repaired.

A hydrocele is a collection of watery fluid around the testicle. It was explained to us as a step before a hernia. The dr wanted to fix it because he doesn't want it to develop in to a hernia and the fluid that is flowing from the abdomen to the testicle is warmer than what the testicle should be in which would cause poor growth of the testicle.

Max before surgery.

The surgery and recovery went really well. We were at the hospital for a total of two and a half hours. Three nurses that day knew Max from a previous stay or surgery. I found that quite interesting. The nurse in the recover room cared for Max while he was in the NICU at a different hospital. And to top that off, the anesthesiologist had put Max under before for his g-tube and nissen wrap surgery. I found all of that very comforting.

Since the surgery, Max has been himself. We are keeping him home all week to recover. He probably could have gone back to day-care and school today and Friday, but we didn't want to push it.

At Max's three year check up he was 22 pounds and 33 inches.

Max at home after surgery doing his favorite things. Watching Signing Times and rocking in the rocking chair.

Happy 3RD Birthday Max!!

2009-11-16T11:35:00.009-06:00

We celebrated Max's birthday with lots of family on Sunday! We had a "Max's little fishy" themed party since he loves, loves, loves the song. Max's Papa Dave made the cake for him and, as always, impressed everyone! Max dived in to the cake this year and really seemed to enjoy it. Thank you to everyone that celebrated with Max!
A pic from Max's three year old photo shoot. . .

Max with his AWESOME cake. . .

That was good. . .

Max with one of his gifts. . .

Going in for a birthday kiss. . .

Everyone who celebrated with Max. . .

Bitter Sweet

2009-11-14T14:42:00.002-06:00

This was Max's last week with his Birth to Three therapists since he is turning THREE on Sunday. Birth to Three has been a part of our lives since Max was four months old and it just seems strange that they won't be a part of our weekly routine anymore. It is a bitter sweet transition. It will be hard not seeing the therapists that have worked with Max week after week, but I am excited to see him in a school setting. Above is a picture of Max and his Speech Therapist that came to our house on Tuesdays from 4:30 to 5:30 every week. Max was always excited to see her. I would tell him that Elsa was here and he would run to the door to greet her.

Wordless Wednesday

2009-11-11T06:51:00.001-06:00

School Pics

2009-11-02T19:54:00.001-06:00

Happy Halloween

2009-11-02T19:40:00.002-06:00

Max's First Day of School

2009-10-29T18:17:00.002-05:00

Max had his first day of school on Wednesday! He will be going for 1 hour and 15 minutes on Wednesdays before he turns three on November 15th. Once he is three, he will be going 2 hours and 15 minutes four times a week. We wanted to start him a little early to get him acquainted with the school. The pick up and drop off went well at his day-care. He will be riding in a van to and from school. And it sounds like he enjoyed himself at school. He met with OT and PT and got to spend a little time with the rest of the class. The early childhood teacher said she is going to have to break the other students of calling him a baby. She told them that he is three just like them and not a baby. It sounded like he was a new toy. The kids wanted to hug him and pick him up. Hopefully the excitement of a new kid will wear off by the time he starts four days a week. Ava even ran in to him in the hall and was really excited to see him at school and show him off to her class!

When Max starts on November 16th, he will be getting the following therapy at school:

20 minutes of Speech Therapy four times a week
30 minutes of Occupational Therapy three times a week
30 minutes of Physical Therapy two times a week

The rest of his time at school will be in the classroom. He will also have music class and go to the school library during week.

This will be quite a change in the amount of therapy he will be getting each week. He currently gets four hours of ST and one hour of PT a month. I don't think it is going to bother Max since he loves one-on-one attention of adults.

Pumpkins

2009-10-25T20:43:00.009-05:00

On Sunday, we took the kids the the pumpkin patch we make an annual trip to. It was a beautiful day, which has been rare here. The sun was shining and it wasn't too cold. The kids had fun looking at all the animals, going through a corn maze, and on the wagon ride to the pumpkin patch. We even got the pumpkins carved that same day! Having a seat on the giant pumpkins. . . Max watching the pigs run by. . . Ava's pic of mom and dad. . . Pumpkins, pumpkins, and more pumpkins. . . Ava posing for a fall pic. . . Skulls. . . Pre-carving. . . Cleaning out the pumpkins. . . Max playing with the insides. . . Carving. . . I think they all turned out well. . . This video is too funny. Ava was cleaning out the pumpkins and Max was helping!

Signing Times

2009-10-17T07:43:00.004-05:00

Recently Max has been interested in watching his Signing Time videos. However, he only wants to watch the introduction song. When it is over, he will bring the remote to one of us to start it over again. I shouldn't be surprised by him doing this. He is a very repetitive little boy. He likes to do things over and over for awhile before he moves on to something else. Oh, and he learned how to sign "grandpa". He can sign "dad" and "grandpa", but no "mom". What!

From the Mouth of Ava

2009-10-17T07:39:00.002-05:00

John and I were talking about Max's IEP goals and Ava said one of Max's goals is that she hope he falls in love with a girl. Where did that come from?!?

Happy 6th Birthday Ava!!

2009-10-09T06:09:00.012-05:00

Ava turned SIX on September 23rd. Her 6th birthday didn't pass unnoticed. She had fun celebrating with friends and family. I can't believe I have a six year old. Since she started Kindergarten, she seems like she has really grown up to be an independent little girl.
One day old. . .

One year old. . .

Two years old. . .

Three years old. . .

Four years old. . .

Five years old. . .

Six years old with Ipod we gave her for her birthday. . .

Aunt Becky took her to get her ears pierced. She was brave and didn't shed a tear.

She invited a couple girls in her class to party at Chuck E Cheese with her.

Max had fun too!

Ava with her Hannah Montana cake Papa Foley made for her. . .

Family. . .

Gifts. . .

Group shot of family that celebrated with Ava. . .

Early Birthday Present and Update

2009-10-08T18:05:00.009-05:00

Max received a swing as an early birthday present from his Grandma and Grandpa Foley that we hung in the garage. He loves it! Every night when we pull in to the garage, he signs "swing". If we are in the house, he will stand by the door going to the garage and sign "outside" and "swing". And if he is feeling polite, he will sign "outside", "swing", and "please". How can I say no to that!

Max's transition to his new day-care went very smoothly. He has been at the center a little over a month now. I don't think Max even knew a transition took place. His new teachers were eager to learn about Max, his feeding issues, and all of the signs he uses to communicate. What a relief! One of his teachers went to school for teaching and got her minor in Special Education, so she was specifically moved to the room to be with Max. She is also coming along to Max's first IEP on Monday to help us with the transition from day-care to school. He has been pulling hair at home lately, but the teachers said he hasn't pulled hair at the center yet. The only thing he does that the kids don't like is he pulls their face towards him to get their attention. His "hey, look at me" gesture.

Max had a kidney ultrasound and an appointment with his Urology doc on Wednesday. There was not much change on his ultrasound of his kidneys from last year. Still a small amount of fluid/swelling in his kidneys. The doctor said we don't have to come back for another ultrasound for two years. He said there is only a 5% chance that it could get worse. But they like to keep an eye on it. While we were there, the doctor noticed that Max had another hydrocele, so we scheduled surgery for December 1st to fix it. It was not as noticeable as the one he had a year ago. His last surgery went very smooth and recovery went well. You would have never known he had surgery. I am hoping for the same results this time around. I was hoping to be surgery/anesthesia free this year. There is always 2010!

Cowgirl

2009-09-14T08:52:00.006-05:00

Ava wants to be a cowgirl! John took Ava to his family's farm so she could horse back riding with them. I was actually shocked that she wanted to do it. Ava is usually afraid of animals. She got on and loved it. She is talking about riding again before winter.

Indroducing Paul John (PJ)

2009-09-13T15:31:00.004-05:00

We have a new itty bitty member of the family! John's sister (Deanna) and brother-in-law (Ryan) had a baby boy on September 3rd. Twenty days before his due date.

Welcome Paul John (PJ)
September 3rd, 2009
7:22 AM
6lbs (even)
19 inches long

Congrats Dee and Ryan! We are so happy for you! PJ is lucky to have you as parents!

Ava's First Day of Kindergarten

2009-09-07T13:48:00.004-05:00

On Tuesday, Ava had her first day of Kindergarten! She was nervous and excited all at the same time. I was worried about her all day wondering if she would want to go back the next day. When I picked her up from the day-care center she goes to after school, she told me "she LOVED Kindergarten".

Dressed and ready to go . . .

Getting on the bus. . .

Getting off the bus at school. . .

At her spot at the table. . .

I hope she continues to like school! She has many more years to go!

Signs

2009-08-30T18:29:00.003-05:00

I am working on putting together a packet of the signs Max knows for his new day-care he will be starting tomorrow. I was surprised to see how many signs he knows. He has his own modifications of some of the signs, but we understand what he is telling us.

Here is a list of the signs he knows.

1. More
2. Hello
3. Please
4. Swing
5. Sing
6. Play
7. Eat
8. Drink
9. Out/Outside
10. Fish
11. Dad (Arg! Looks a lot like "hello" so I am not convinced!)
12. Ball
13. Dog
14. Jump
15. Bed
16. Bye
17. Yes
18. Change
19. Bath
20. All Done
21. Car
22. Go

So proud of that little guy!

I am so nervous about Max starting at his day-care center. If it wasn't for his feeding issues, I would be OK.

Branson (Lots of Pictures)

2009-08-23T13:26:00.010-05:00

Last week, John's mom and step-dad (Marsia and Ted) invited us to spend a week with them at their time share in Branson. We had a wonderful week of relaxation! We did lots of sitting by the pool, relaxing in the room, and eating great food! Ava loved being in the pool, she spent most of her week in the pool or hot tub. Marsia and I spent half a day at a spa getting a manicure, pedicure, and one hour massage. It was WONDERFUL! John and I also had a couple date nights. One night we went out to eat to a seafood restaurant and then to the Neal McCoy show. The show was lots of fun. On our second date night, we went to The Titanic museum. Max had lots of fun getting attention from Grandma and Grandpa. He wasn't super excited about the water, but got in a few times. We also spent a day at an amusement park. Thank you Marsia and Ted for the great week!! We had a great time!

Max wasn't this happy the whole 11 hour car ride!

Pre-K Graduation

2009-08-23T13:02:00.004-05:00

Last Friday, Ava graduated from Pre-K and had her last day at the day-care center she has been going to since she turned three. I can't believe Ava will be going in to Kindergarten, she has grown up too fast. She is excited and ready to go! The only thing she said she is nervous about is making new friends. Best of Luck in Kindergarten, Ava!

Ms Maureen

Ms Mara

Papa and Grandma Foley

Last Week

2009-08-14T06:50:00.002-05:00

Since this is Max's last week at his current day-care center (tears are welling in my eyes), I visited the center this week. Max's Speech Therapist also came for an hour. I wanted to get a feel for how he is doing at his current day-care to, hopefully, help me transition him to his new day-care center that is in the school district he will be attending when he turns three. I was a very rough week counting down the days until a big transition for Max and me.

I was pleasantly surprised at how well he does! He followed directions and the routine very well. I got to enjoy circle time with him. (I have a video, but can't get it to post) He loves singing songs, it was so cute. I left for an hour and came back and joined his speech therapist when the kids were heading in for lunch. He came in and sat in his chair, listened to a couple books on tape while one teacher changed diapers. He did great at meal time. He ate like I have never seen him eat before. The speech therapist and I were both in shock. This was the first time his speech therapist has seen him eat other than at home. We are trying to figure out why he is so calm when eating at day-care and does so well! At home, he seems like he is rushed and doesn't eat much. I am not sure if it is because when we are at home we don't have a routine that we follow. After he ate, he signed all done and the teacher called him over to wash up. Once he was cleaned up, he walked over to his mat and laid down. I gave him a kiss and left. He seemed so grown up!

It was fun hearing about little things that Max does during the day from his teachers. They told me when Max is getting in trouble, he will look at them and sign "hello" like he is trying to change the subject. The teachers sign to Max when they are talking to him, which I really appreciated. We are really going to miss the center he is currently at and they will always hold a special place in my heart! All of Max's past and present teachers put together a photo album with a picture of them with Max and a little note to us. It was so sweet!

Max has a two week break before he starts at the new center. We will be on vacation for a week and he will be at home for another week. I hope we don't break him of doing so well away from us.

Ms Jen- Max has spent most of his two plus years with Ms Jen. She was with him when he was in the baby room. She knows Max VERY well!

Ms Adrian- Ms Adrian is fairly new to Max. She has been with Max for about six month and in those six months Max has grown attached to her and I think the feeling is mutual.

Some Summer Fun!

2009-08-05T19:52:00.006-05:00

I can't believe summer is almost over! I thought I would share some pictures of the kids this summer.

At the Children's Hospital Picnic. . .

Daddy/Daughter Day in Milwaukee. Out to eat for lunch, zoo, Miller Park for tailgating and the game. Ava was TIRED after this day.

County Fair. . .

Flashback and Feeding Update

2009-08-05T19:44:00.005-05:00

I have recently been reading through emails that have been sent to the RTS list serve. I couldn't help but to get a flashback to the day when Max was admitted with his first aspiration pneumonia. During that hospital stay, we found out that Max was aspirating on his feeds and his reflux. He was also diagnosed with Rubinstein -Taybi Syndrome. He was sent home with a NJ tube (a tube inserted through his nose that feed him to his intestines). Over the next couple weeks, we discussed with the GI Dr and Surgeon the options of a permanent feeding tube. We were given the options of a G-tube with a Nissan wrap or a GJ tube. Although Max was fed to his intestines, he developed another aspiration pneumonia from the stomach bile he was refluxing. During that admission, Max had surgery to place his G tube along with a Nissan wrap.

When the G-tube was placed, I wanted to know how long he would have it. Would it come out in 6 months? Would he still be fed by a tube when he was 25? Not knowing was so hard at the beginning. I had a hard time wrapping my head around the whole feeding tube. An hour and a half feeds seemed crazy to me. How could we fit a feeding tube in to our life. I have never even seen a child with a feeding tube outside the NICU!

But we went home and worked to find a schedule that worked for Max. As time went by, the number of times he was throwing up a day and the length of each tube feed decreased. The feeding tube became part of our life and we accepted it. We accepted the fact that we were not going to know when Max was going to come off the feeding tube, but we have a feeling he will someday.

At the beginning of June, we took him off his overnight drip and gave him the amount he was getting overnight in a sippy cup. We give him two ounces in his sippy cup six times a day. We are going to work to bump him up to 3 ounces in his sippy cup at a time and see how he does with that. He loves to drink! Got to love progress! Way to go Max!

Addie's dad is at it again!!

2009-08-05T19:37:00.002-05:00

Michael Ellis is running 26.2 miles to raise money for RTS! What a guy!! We have had the opportunity to meet this wonderful family at the midwest family reunion in the Dells and think it is awesome that he is raising money for The Special Friends Foundation!! Please click on the link to the right of my blog for more information.

Go Michael and THANK YOU!

Pinata for Papa

2009-07-19T09:08:00.005-05:00

About a month before Papa Foley's birthday, Ava decided that he would really like it if we made him a pinata for his birthday. We decided on a big smiley face because papa likes to say "happy, happy" and I thought it would be easiest for our fist pinata to be made with one color.
After a coat of paper mache. . .

Dry and ready to decorate. . .

Decorating. . .

Filling with goodies. . .

Finished. . .

Giving to Papa. . .

Swing, Swing, Swing

2009-07-19T09:02:00.002-05:00

He would swing 24 hours a day if it were up to him. And yes, he knows how to sign "swing" and signs it often.

What do you think of his "happy to be swinging" look?

Dells with the Foley's

2009-07-19T08:41:00.004-05:00

Each year the Foley Family gets together for a weekend in the Dells. We have a great time hanging out, going to the water park, eating, and laughing. We even had good weather this year, which is out of the ordinary for this group! Thanks Dave and Janice for the fun weekend! Next year we will have a new addition on the trip. Deanna and Ryan (John's sister and brother-in-law) are expecting in September!

The group out to eat. . .

Each time Max is in the water he likes it more and more. . .

His favorite place of all. . .

Max and Aunt Dee. . .

Ava on the fast slide. . .

OT on Vacation. . .

Tats. . .

Wordless Wednesday

2009-07-08T07:03:00.002-05:00

Delay

2009-07-04T11:53:00.003-05:00

When Max was first diagnosed with RTS, I could hardly stand to read his evaluations we received from the Birth to Three program he is in. I knew Max was delayed, it was just hard to see it in writing. A couple weeks ago, Max was evaluated by Birth to Three to make a referral to the school district for their early childhood special education program and I just received the results in the mail. When I read the results, I was so proud of Max and wanted to share them with you.

Cognitive Skills are at the 22 month level with skills emerging up to 24 months.
Adaptive Development/Self Help Skills are at the 14 to 18 month range.

Social and Emotional Development are at the 18 to 24 month range.

Max was 31 months old when he was evaluated.

We are so proud of you Max!!

Yes, he is delayed, but he continues to make significant gains and today it feels good!

Run for Fun

2009-07-04T11:20:00.005-05:00

This summer, Ava started participating in a Run for Fun at the track in town. They have a little track meet one night a week for five weeks. The first night we went, Ava did not participate at all. She stood at the start of the race and just cried. When we left, I told her that I wasn't going to ask her if she wanted to try again next week, she would have to let me know if she wanted to go back. The second week, she said she wanted to try it again. It went much better than the first night. She ran the race, but got emotional at the end of the race. And by the third night, she enjoyed participating. This is usually her pattern with most things. It takes her a while to warm up, but she keeps on trying. The track meets are so cute. Ava's age group gets to participate in six events each night and they get a ribbon for each event.

Long Jump

50 Meter Dash

Ava with her ribbons.

Max loves going to the track meets. He laughs at the kids as they run by.

Cocoa Beach Bliss

2009-07-04T11:00:00.004-05:00

Last week, I got the opportunity to vacation in Flordia with four other mommies I met on-line through my blog. We all have a child with RTS, but I never thought we would have so much more in common. It was like we knew each other for years! We all got along great, which was good because we shared a room with one bathroom!

Our lazy days consisted of sleeping in, eating out, frozen drinks, beach, and great company!

Sun and Sand!!

Night out at Fishlips!

Celebrating my birthday in Florida!

Kelly W and Myssie

Kelly W and Jessica

Christine and Myssie

Seven Year Anniversary!!

2009-06-15T05:59:00.003-05:00

Happy Anniversary John!!

Thank you for being by my side through the good times and bad over the last seven years! Love you!

An Update

2009-06-13T08:10:00.012-05:00

With the weather starting to be nice outside, I find it harder and harder to get on the computer to blog. So I thought I would post a quick update with what we have been up to. Now thinking about it, I don't think I have much to share.

- A couple weeks ago, Max had an eye exam. No dilatation was needed this time. In 6 months they will dilate his eyes to take a look. His eyes are developing well. He had a VEP done where they put about five electrodes on his head and he watches a TV screen with black and white bars. It is like reading an eye chart for those who can not. His vision is 20/30. Technology is crazy!

- We visited Max's soon-to-be Early Childhood teacher in the school district we are in. The visit went very well and helped calm my nerves about my little guy going to school when he turns three in November. Our service coordinator from Birth-to-Three was also with us. We all went over what happens between now and when Max starts Early Childhood.

- Since Ava will be starting Kindergarten in the Fall and Max with start Early Childhood in November, we had to find child care in the school district he will be attending in order for a van to pick him up and drop him off from school. I think this is the hardest thing with the upcoming transition. . . so far! Right now, the kids go to a WONDERFUL day-care center close to John and my work in Madison. My goal is to transition Max at the beginning of September when Ava starts school so he doesn't have two BIG changes in November. - We have hit a bump in the road with Max's feeding. He has decided he doesn't want to eat by mouth anymore. We have been giving him two ounces of pediasure about five times a day by mouth along with his g-tube feeds. He hasn't gotten sick, so we feel comfortable giving him two ounces of pediasure by mouth at a time. So, he gets all of his calories during the day and no longer gets his overnight drip!!! Problem is, he doesn't want to eat by mouth. We usually wait to give him his cup until after he eats food by mouth. Now, he pushes the food away without even taking a bite and starts signing drink. I have also tried to give him his cup with his food so he wouldn't have the anticipation of getting his cup after he eats. He doesn't even have an interest for cheetos and Cheerios. Any suggestions!! His therapist said it sounds like Max's pattern with developing. He usually concentrates on just one thing for a while before he will add something new. Or drinking is just easier for him and he is going to choose the easy route. Help! Any suggestions? Here we go again, one step forward. . . two steps back!

- Max still loves to swing. As soon as we get home, he starts signing swing and wants to go to the park.

- I am getting excited for my trip to Florida with four other mommies that have a child with RTS. We are leaving Thursday, June 25 and coming back on Sunday, June 28. John, Thank you for letting me take this trip!!

- John and I went to our first Brewer game of the year with his sister and brother-in-law (Deanna and Ryan). We had fun and are looking forward to going to a couple more games this year.

Ava's Swimming Lessons

2009-06-09T21:02:00.004-05:00

Today was Ava's last day of swimming lessons for this session. She is a good little swimmer and is becoming confident in the water. We will have to take her to the pool this summer to keep her skills up. I am glad she loves being in the water.

Her report card and a picture of Ava and her instructor:
Working on the backstroke:

Heart Warming

2009-05-16T20:08:00.004-05:00

While on the way home from work after picking the kids up from day-care last week, "Remember When" by Alan Jackson came on the radio in the car. Ava said to me that Max was holding her hand. I looked and sure enough he was. We got closer to home and Ava said Max was still holding her hand. As I pull in to the garage and park the car, Ava unbuckled and started hugging Max and I could hear her crying. I asked if she was sad and she said "No, I don't know what I feel". We get in the house and Ava and was still crying. She got out her markers and a piece of paper and started. She brought in a drawing to me and asked if I new what it said. I said no, what does it say. She said the picture said that "Max lets her break her heart." She said she was crying because she was happy and she loved Max so much. I told her that Max was so lucky to have her as a big sister. She got a big smile on her face and gave Max a big hug.

Almost a Kindergartner

2009-05-16T19:45:00.004-05:00

A couple weeks ago Ava had her Kindergarten orientation. Prior to going to the orientation, she mentioned she was excited to see the lockers and desk. I had to burst her bubble and tell her that in Kindergarten she wouldn't have lockers and desks. She would have a hook for her coat and backpack and they would sit at a table. She looked at me kind of confused and said "Well, what do you do in Kindergarten then." And she asked if she could start wearing make-up when she goes to Kindergarten. I asked here why she thinks she is going to have a locker. And her response was "On Hannah Montana they have lockers." I hope her idea of school isn't hanging out by her locker while wearing make-up!

She did have a good time at orientation meeting all the teachers and seeing all the rooms. I hope it gives her a better idea what to expect when she starts school. I think it made her feel better that things didn't look much different then her pre-k room that she is currently in. She loved seeing the art area in each room and all the supplies they had. . . her favorite!

And she has learned to tie her shoes, so she is all set!

We've got a . . .

2009-05-16T19:18:00.010-05:00

WALKER!!! It is official! After months and months of practicing and teasing us, Max is walking. We are so proud of him. He started walking on his Aunt Becky's 30th birthday on April 25th. Check out the video. . .

Now that Max is walking, he is starting to play around with different sounds. mmmms and aaahhhs. Music to my ears! Prior to these new sounds he would usually only make a "ha" sound.

Along with the sounds, he is picking up signs. He has now signed more, all done, dog, go, please, eat, drink, bath, and bannana. They may not be clear signs to others, but they are clear to me.

I don't know where all of this is coming from all at once. I am not sure if it is because he is not getting sick as much and he has longer stretches of being healthy. Whatever it is, I will take it.

Max is loving going to the park to swing. When I ask if he is all done swinging, he will sign more like a mad man.

The little man is definitely a mommy's boy. If I am around, he needs me to be holding him all the time. He will have a meltdown if I set him down. So that is a bit of a struggle, but at least I know he loves me! Do you think he is playing me???

Hello Ladies. . .

2009-03-28T17:57:00.003-05:00

Back to the Dells

2009-03-24T09:26:00.003-05:00

We spent last weekend in the Dells with John's mom's side of the family. We had a great time hanging out in the room with everyone and the kids especially had a great time at the water park.

All Done

2009-03-24T09:00:00.002-05:00

Max picked up a new sign! He now signs "all done" and he even is initiating it by himself. Yesterday at one of his doctor appointments, they were trying to get his blood pressure and he started signing "all done". I was so proud! He now signs more, all done, and waves hi and bye.

Genetics Appointment

2009-03-19T21:18:00.003-05:00

I don't need to see you for two years. That is what I heard the genetics doctor tell us this week! He said that Max is doing well and he is being followed by all the doctors and therapist that he thinks he should be seeing. Prior to this appointment, we had a genetics appointment every six months. Yeah! One appointment to cut out of the rotation for a couple years.

On the RTS growth cart, Max was at the 50%ile for his weight and 25%ile for his height. He is following his curve well.

Flip Fest

2009-03-19T20:08:00.007-05:00

On Monday night, Ava had her first gymnastics program. The program gave family and friends a chance to see what the kids have been working on during class and an opportunity to perform before an audience. At the end of the program everyone received a trophy and ribbons. It was pretty neat and Ava was proud of herself. Her Grandma and Grandpa (John's mom and step-dad), Aunt Sara, and her cousins, Bridee and Lainee came to watch her. Which she thought was pretty cool.

Before the program, we went to the bowling alley and the kids had fun bowling a game.

Lainee, Bridee, and Ava

Kalahari with The Piller Family

2009-03-14T17:19:00.010-05:00

After the RTS reunion, we checked in to the Kalahari with the Piller family. We had a great time going to the water park, indoor theme park, and out for dinner at Kahunaville together. Everyone had a great time. Well, maybe not everyone! I kind of felt like I was torturing Max during the entire stay. It took him a long time to warm up to the water park, the indoor theme park was too noisy and overstimulating for him, and he did not like the MC and the loud music at the restaurant we ate at.

Thank you Piller Family for a great day!

Ava and Caroline at the Kahunaville restaurant. . .

Caroline on stage at the Kahunaville restaurant. Every half hour they get kids on stage to dance. Caroline had no stage fright! She hopped right up and got down!

Ava and Max. . .

Max after warming up to the water. . .

Climbing the rock wall at the indoor theme park.
John

Kelly

Caroline

Ava

John and Ava enjoying the water park. . .

Annual RTS Reunion in the Dells

2009-03-10T20:37:00.010-05:00

Last weekend we went to the annual RTS reunion in the Dells. This is our second year that we have gone the reunion and I have to say it was much easier to go to this year. Last year I was nervous not knowing what to expect. This year, I looked forward to going and mingling with my RTS family. I had a few rough patches during the weekend worrying about the furture. But overall, the reunion was positive for me. There were about 20 families that attended with a head count of about 120 people. A big THANK YOU to Teri for all the planning. Max must have been "feeling the love" at the reunion because he showed off some walking skills. Dave and Janice (Papa and Grandma Foley) also came to reunion with us.

When I got home and downloaded my pictures from the reunion, I realized that I didn't take too many pictures at all which I was pretty disappointed about. Click here to check out Will's blog for pictures Myssie took at the reunion. She does a great job capturing moments.

Group photo. . .

Caden rockin' out. If you need a hug, Caden is the guy to go to. . .

Ava was so excited to see CAROLION. . .

John, Max, and Jeni talking Tom Hanks. . .

Will and Max say "no more pictures". . .

From The Mouth of Ava

2009-03-02T22:59:00.003-06:00

On the way home tonight, Ava said "is this where tears come from" as she pointed to her throat. No, why? "Because I get a funny feeling in my throat when I am going to cry."

A Band-Aid Makes It Better

2009-03-02T22:46:00.006-06:00

Max has been building confidence and taking steps again. . . and he ended up with a band-aid after falling in to one of his toys and getting a small cut at the end of his eyebrow. After his 2nd birthday in November and getting is Sure Steps, he seemed really interested in walking. But all of the sudden, he decided to take a break with learning to walk and choose crawling to get from point A to point B. Over the last week or so he has been wanting to give walking a try again. I hope it sticks this time and he becomes more confident with taking steps. The Sure Steps seem to really help him. He can hardly keep his balance when he doesn't have them on.

Polar Plunge 2009

2009-02-22T15:27:00.007-06:00

On Saturday, John and the rest of Team RTS - Reaching the Stars took the Polar Plunge for Special Olympics Wisconsin. There were 14 members on Team RTS and they raised over $6,300. Thank you to all who made a donation!! It is greatly appreciated!! The temperature was about 20 degrees and everyone (I believe) wants to do it again next year! I guess jumping in freezing water feels good when it is for a good cause!!

Click here for a YouTube video of the jump. The whole team couldn't jump together so they broke up in two groups.

In the nasty hot tub after the jump. . .

Becky and Ryan rockin' the costumes. . .

Freezin' for a Reason. . .

She Knows What She Wants

2009-02-10T20:02:00.002-06:00

Ava told me that for Valentine's Day she wants flowers, a card, and chocolates in a heart shaped box AND the chocolates and card put in a Valentine gift bag. John said that he would hate to be dating her!!

Ava on Ice

2009-02-01T08:07:00.003-06:00

After going to Disney on Ice, Ava thought she needed to learn how to ice skate like the Disney characters she saw. Since it wasn't too cold last night, I took her to the rink in town. She did really well for her first time. She isn't afraid to fall, so that made it even better for practicing. I took a chair for her to push around, but she decided she wanted to do it by herself. I also put on a pair of skates. I forgot how sore your ankles and feet get until I took them off.

Slow Down

2009-01-31T13:06:00.004-06:00

It is hard to hear that I need to slow down when I feel like I am going 10 mph in a 55 mph zone. Well, slow down is what I heard at Max’s 1st feeding clinic appointment on Friday. At his appointment, we met with a doctor, speech therapist, and a nutritionist. Also, the speech therapist that does Max’s swallow studies stopped in for the feeding observation. The reason I applied for the clinic, was help to determine if Max was getting enough calories (determine the amount he needs) and help me work towards getting him off the tube. I know that isn’t something that would happen overnight, but I thought since he was doing well by mouth that I needed some additional help. His speech therapist he sees weekly referred me to the clinic and she was kind enough to join me at the two and a half hour long appointment. The team said that he is doing great, but they do not want to push any more textures at this time. They want him to become more comfortable with what he is currently eating by mouth (soft veggies, fruit, noodles, cheerios, etc.). They do not feel that he is safe enough to advance at this time because of his dysphagia and the possibility of him still aspirating, since he coughed during his feeding observation. They also want another swallow study in 3-6 months before we can give him more than two ounces of liquids at a feeding and more than one drink at a time. So, we have to let him take a drink and take the cup away from him for a short break before we give him another drink. I discussed him not doing well at his last swallow study because of his fear of being in a radiology room and they thought he may get over his fear before his next study. We will see. It was a very overwhelming day for me! I thought things were going so well, only to be told that we need to SLOW DOWN! This feeding stuff is definitely my biggest hurdle with RTS! We will follow up with the feeding clinic after his swallow study. I did get bit of good news from the appointment. Based on the feeding journal I provided the clinic, he is getting 43% of his required calories by mouth. I was SHOCKED to hear that!! 43%!! And the feeding team was very impressed by how excited he gets by food and how he wants to eat for having a NJ-tube then a G-tube. So, some words of encouragement!

Disney On Ice

2009-01-28T07:20:00.004-06:00

Last weekend, Ava got to spend the weekend with her Papa and Grandma Foley. They spent Saturday night in Chicago at a hotel with a pool and went to Disney On Ice. I don't know if she had more fun swimming or at the show. But she had a great weekend and is still talking about it and missing her Papa and Grandma. Her favorite character at Disney on Ice was Tink. Thanks Papa and Grandma for the great weekend!

Max was also suppose to go to Chicago and John and I were going to have a weekend alone. But during the week, he ran a temp for four days. We got him in to the dr and found out he had an ear infection and a pretty good cold. He has ear tubes, but the one in the ear that was infected was clogged with wax so the tube wasn't doing its job. The dr thought that it will unclog by itself. He is on a antibiotic that he has been on a number of times and this is the first time it has given him the diarrhea. This whole month Max hasn't been feeling the best. Before getting the cold/ear infection, he had diarrhea for nine days straight. I am sick of cleaning up after blow outs! I just have to be thankful that it wasn't aspiration pneumonia. I was so worried about that, that I was getting sick. He has been making improvements eating by mouth and I was so worried that we would have to takes step backwards with his feeding. I told my husband that if Max hurt his toe, I would probably worry about aspiration pneumonia! And he has become quite the little cling-on! I want my happy little guy back!!

Our thoughts are with Bella and her family.

2009-01-26T21:16:00.003-06:00

Our thoughts are with beautiful Bella, a RTSweetie, who passed away last night and is now in the arms of angels. Please keep Bella and her family in your thoughts and prayers tonight.

In memory of Bella Reign Guerra
February 16, 2007 to January 25, 2009
Rest in Peace

For more about Bella, check out Frankie's site.

Barack by Ava

2009-01-19T21:05:00.004-06:00

Sorry that the video is sideways. . .

Little Helper

2009-01-11T08:46:00.002-06:00

On Saturday, John had to work and didn't shovel the driveway before he left. Ava said she wanted to surprise dad when he got home and have the driveway shoveled. She shoveled about half of it before she decided she wanted to play with her sled instead.

Freezin' for a Reason

2009-01-10T07:52:00.007-06:00

On February 21, John and his team will be Freezin' for a Reason when they take the Polar Plunge for Special Olympics Wisconsin. If interested in making a donation or JOINING HIS TEAM, click on the link below for more details. John named his team RTS - Reaching The Stars. Thanks!!

http://www.specialolympicswisconsin.org/pp09/team.asp?id_t=355

He Fed The Pig

2009-01-05T21:45:00.004-06:00

John called me at work today to tell my how Max's therapy session went. He said that after weeks of practice during therapy, Max figured out how to put plastic coins in a toy piggy bank using a pincher grip. And with all the encouragement, he repeated dropping coins in the bank. We are proud of all your hard work Max!

A couple days ago, Max started doing the funniest thing. When I tell him "no, no, no" he will look at me and smile and nod his head "yes". I haven't even worked on nodding "yes" with him. Then I would say "yes" to him and nod my head and he will smile back and shake his head "no". It is fun seeing his personality shine through.

Happy New Year!

2009-01-02T20:26:00.002-06:00

Welcome 2009!

Ava, Max, and their cousins getting ready to bring in the new year!

Christmas 2008

2009-01-02T18:59:00.015-06:00

I hope everyone had a great Christmas!! Ours was filled with lots of fun hanging out with family.
The weekend before Christmas, we spent the weekend with John's dad (Dave), step-mom (Janice), his sister (Deanna) and her husband (Ryan).

Santa even made a surprise visit, which Ava was really excited about and hopped right up on his lap to have a little chat with him.

Max fell in love with a caroler and angel decoration. He loved to look at them, give them hugs, and play with their hair. It was so cute!!

Santa came! Ava and Max with their stockings.

Ava with her craft desk Santa and his elves built for her. Santa did a wonderul job and Ava loves having her own desk.

And thanks to Will's mom, Myssie, Santa found a great gift for Max. He has been enjoying his tunnel. Not as much as Ava has, but I am happy that he will go through it and has fun chasing Ava through it.

We spent Christmas morning at John's mom (Marsia) and step-dad's (Ted) Christmas celebration.

Ava and Max had fun spending time with their cousins Bridee and Lainee.

The girls all got new fishing poles. The Snoopy poles will be put into retirement.

In the afternoon on Christmas, we spent the rest of the day at my mom (Mary Lou) and step-dad's (Gary) place.

Max sharing Grandma's lap with Emerson. Max gets jealous when Grandma holds Emerson, but he doesn't get jealous when I hold Emerson. Go figure!

Ava opening her Barbie cash register.

This is the first present Max ripped in to with Dad's help.

And on the Saturday after Christmas, we celebrated with my Dad's (Gary) side of the family.

It has hit the Foley home!

2008-12-24T20:17:00.003-06:00

That bug that has been going around! Ava came down with it Monday night, but seems to be doing better today. She is back to flipping around the house. Max came down with it last night. He threw up three times last night and once today. He has also had diarrhea(sorry) all day. So we have him mainly on pedialite until he can keep pediasure down again. We are skipping out on the Christmas Eve festivities we were planning on going to and hope he is better tomorrow. We have Christmas at John's mom's and my mom's tomorrow. Hope for a quick recovery!

Merry Christmas!

2008-12-24T15:11:00.010-06:00

The cookies have been decorated. . .

The tree has been trimmed. . .

SNOW is here. . .

We are ready for Christmas!

Hope everyone has a Very Merry Christmas!

Movin' on up. . . .

2008-12-13T08:38:00.005-06:00

A couple weeks ago Max went from being a ducky to an otter. What does that mean?!? It means he moved to a new room at day-care! He is now with a group of kids that are 18 months to 2 years old. A month or so ago, the director of the center asked me what my thoughts were about moving him up. She felt that it would help him developmentally to move up. She said that he has outgrown the room he was in. John and I met with the director and his teacher and agreed to move him up. I was not nervous at all about the transition since the led teacher in his room was also his lead teacher in the baby room and knows Max very well. And has been waiting to get Max back in her room again. We were excited about the new step in Max's life. And he is doing great. He sits on a little chair for meals and naps on a mat. Which, to my surprise, he is doing very well with both. I can't believe he is napping on a mat! They said his favorite part of the day is circle time where they sing songs and read books. He gets one of his g-tube feeds during circle time and sits very well for it. I am so glad we have a great, safe place for Max and Ava to spend their days while John and I are at work. They have never made us feel like they cannot handle Max's needs.

Max with teachers in new room (The Otter Room).

Max with teachers from his old room (The Ducky Room).

Two Year Check-Up

2008-12-13T08:10:00.002-06:00

Yesterday we had Max's two year check-up. Here's his stats:

Weight: 20.6 Pounds

Height: 30 Inches Long

At his one year check-up he weighted 18.3 pounds and was 27.5 inches long.

His lungs sounded good, which was my concern since he started taking liquids by mouth, and his ear tubes looked nice and open. Yeah!

Our main topic of discussion was Max's feeding and how I am a bit at a loss with it. I am not sure how to increase how much he gets by mouth and decrease his g-tube feeds (even though right now he is not getting enough by mouth to decrease his g-tube feeds), calculate the calories he needs, etc. Ahhh! I heard from Max's ST about a new feeding team at the hospital that has a dr, speech therapist, and nutritionist that work together. Max's pediatrician just talked to the dr that was in charge of the program and also thought it would be a good thing for Max. Max's pediatrician made a call to the team and is going to schedule Max's first appointment for us. So hopefully I will have news on that soon!

During the whole appointment, Max sat on the dr's lap, gave her hugs, and played with her hair. I think it is cute that Max likes his dr so much. He even gets excited when she comes in the room.

Back to the feeding. It seems like over the last few days Max is regressing in his feeding skills. It doesn't seem like his chew is as strong and he is not swallowing his food. He is letting it just hang out in his mouth. He has had a bit of an upset stomach this week along with diarrhea and I am not sure if he is just not in the mood to eat. He is still wanting to put the food in his mouth though. Any suggestions? Should I worry?

On Dasher, On Dancer, On Maxer. . .

2008-12-13T07:51:00.003-06:00

What do you think of the newest member of Santa's reindeer team!?!

Feeding Update

2008-12-09T21:11:00.004-06:00

At Max's last swallow study, we were told we could give him an ounce of liquids with each of the meals he eats by mouth. I was a little worried about getting him to use a sippy cup or a cup to drink out of since he hasn't had a bottle since he was three and a half months old. Much to my surprise, he is doing great. He does really well with an open cup (with our help), but I also wanted him to drink from a sippy cup. I haven't been able to get him to drink out of a sippy cup with a valve since his suck isn't strong enough. I took the valve out of the cup and he did pretty good, but I was concerned about the milk coming out too fast. Last weekend, I tried the take and top sippy cups and he does great with them. He is able to get milk out and doesn't make a huge mess. He loves drinking! Milk is his favorite. He has also tried juice. It feels good being able to give him liquids. . . so far he has remained healthy. I tried to give him half milk and half pediasure and he wanted nothing to do with it!

As far as food by mouth, he is slowly progressing. He is currently eating small chunks of soft fruits and vegetables. He also still gets purees that are not too thick or have much texture. And of course his loves. . . cheerios and cheeto puffs.

I am glad that he loves eating by mouth. He would put anything in his mouth, it is just that he can't get it down without gagging. Small steps!

Santa Came to Town!

2008-12-09T20:48:00.003-06:00

Friday night we went to the visit Santa! Ava was excited all week. Ava got a little "star struck" when she sat on his lap. She couldn't even tell him what she wanted for Christmas. Even after me telling Santa she wanted socks, she still didn't have any thing to say. So Santa told her that she could e-mail him with her list. Funny!

Max didn't want anything to do with Santa. I only got him on his lap for a quick picture. Two months ago, Max would have greeted Santa with open arms. He is getting a touch of stranger anxiety. My baby is growing up!!

Santa was in the school's gymnasium. Half of the gym was blocked off with curtains for the kids to shop for Christmas gifts. Each kid was able to fill out of list of who they wanted to shop for and a budget. The gifts ranged from ($1 to $5). One of Santa's helpers took them shopping and helped wrap the gifts. Ava came out with gifts for John, myself, and Max. And she hasn't told anyone what she bought. . . yet! Last year when she finished shopping, she came out and handed me the bag with the gifts and told me that she got me a snowman and dad a screwdriver.

Pig Is Back!

2008-12-09T20:31:00.005-06:00

Last year we started the "Elf on a Shelf" tradition in our home. It is cute and Ava seem to really enjoy it even though it really hasn't made her behave any better. The elf, which Ava named Pig last year (go figure), arrives during the holiday season and is one of Santa's helpers. He watches the kids during the day and reports back to Santa while we are asleep. When Ava wakes up in the morning, she has to find Pig since he moves to a different spot in the house when he gets back to the North Pole each night. And there is a rule that if you touch him, his magic wears off. Ava is VERY strict about that rule. The hard thing is remembering to move it each night. I have to give John the credit for keeping Mr. Pig's spirit alive this year.

We've Been Elfed

2008-12-05T21:00:00.001-06:00

Send your own ElfYourself eCards