Sabolstock X

On Saturday we went to Sabolstock X. I can't believe this was the 10th year! It was a nice day and everyone had a really great time.

This is Pete Sabol...hence Sabolstock!

Pete's mom and cousin Phil.

Sarah and Vanessa

Mr. and Mrs. Hahn, Mrs. Szivos and Teresa

Ollie!

Vicki

Daddy and snugly Raymond

Pete, Brian, Dave and Tom

Teresa, Jason and Jack

Megan and Me

The Hungry Ones

Wiffle Ball...a tradition

The Chronicling of Sabolstock with Sean and Pete

The Jones Family - Mark, Alexis and sweet little Luke

Dave, Me and the peanutKathy and her momIsabella and Jordan (even though Jordan didn't want her picture taken right at that second)Sean and Mrs. GeistVolleyball time! I wished I could have played! I don't have many pictures from volleyball that I can share because it was at the very end of the night and there were a lot of absence gestures towards the camera. Drunken smiles with the gestures but not really appropriate non the less!

One last smile for the camera! Isabella and her buddy Stephanie.

We had fun and we were tired at the end of the night!

Until Next Time!

Lots of Love,

Erica

Something Worth Sharing

This is a link that I think everyone should click on and read. It's another blog that I enjoy and this post is a story that will hit home with a lot of people - whether you have a child with a disability or not. It will make you think twice about how other's feel about themselves. It made me cry but then I'm incredibly sappy. I can't help myself. Do me a favor and read it.

Down Syndrome, Off The Clock

An Addition...

I forgot to put this picture with my last post. Isabella drew me this picture. She said she drew all the fish with babies in their bellies since I have a baby in my belly. She wanted me to have a picture of "mommy fish". I thought it was very sweet! She's my thoughtful girl!

Appointments and more appointments!

Raymond had an appointment with his oncologist on Thursday. My cousin Stephanie is doing a school project on Raymond and another baby so she went along with us to see what a typical appointment was like. We went down Wednesday so she could experience the Ronald McDonald House. Everyone got up early to go over to the hospital because I needed to meet with a nurse from anesthesiology to set up Raymond's tube procedure and BAER study. The anaesthesiology department finally received the letters from all of Raymond's specialists so this was to be the last step. Since Raymond has had seizures in the past the nurse said they will also need a letter from his neurologist. Well, Raymond technically doesn't have a neurologist. His pediatrician monitors it. It will be a year at the end of October since he's had one. She now has to write a detailed letter to the anaesthesia department at St. Christopher's Hospital. I feel annoyed about the entire thing because it's not like he's never been under anaesthesia before...and at their hospital! It was not an issue last time when he had 7 hours of surgery. The nurse said that if he has a history of seizures then the doctor will typically put an IV in and give fluids while he's under. Normally, when you have tubes put in, no IV is required. So hopefully Dr. Haggerty will be able to write a sufficient letter the first time (I'm worried about the anesthesiologist being really picky) and we can get this going. I'd like to have it done before winter!

After that appointment we had a lot of time until Raymond's oncology appointment. I decided to stop in to the office to see if there was anyway they could see Raymond early. The nurses said sure - I love that they are always so flexible. Dr. Halligan wasn't there but Dr. Rozannes was so she took a peak at Raymond this time. The nurse took blood then we headed back to the examine room. Dr. Halligan's head nurse has been with him for 34 years and we love her. She's a great lady. She examined Raymond then Dr. Rozannes came in. Raymond's lungs sounded very crackly to both of then, especially the left side. This is a pretty big concern because as I mentioned previously, Raymond's surgeon is concerned his Nissen came unraveled. The concern is that the crackling is from aspiration. We have to give him breathing treatments to see if it clears. So far it hasn't. If it's not better by Tuesday then he will have to have an x-ray to see if its turning into pneumonia. Hopefully not! Raymond's white blood count was very low and Dr. Rozannes feels strongly it's because Raymond is trying to fight off whatever is brewing in his lungs. We will have to keep a close eye on that. Also, both Dr. R and the nurse feel that Raymond should be seen by a urologist. Raymond's been having trouble with his testicles not dropping down. We saw Dr. Arthur last week and he felt they were fine. Dr. R. didn't feel them and neither did the nurse. They said Dr. Arthur is a good surgeon but they feel Raymond needs a second opinion by a specialist. They tried to get us an appointment that same day but the urology department was really busy. I need to call them tomorrow to schedule an appointment. Better safe then sorry. While we were making our next oncology appointment at the desk Dr. Halligan came into the office. He played with Raymond for a little while and then huddled with the staff that was at the desk. I heard him telling them that they were trying to keep "him as comfortable as possible now. No more can be done." My heart sank as he told them they could take turns visiting him and his family. I don't know the little boy or his family but I felt such grief and sadness. I can only image how they must be feeling. How devastating. Thank goodness for wonderful doctors like Dr. Halligan and his caring staff to be there for the family at the end.

I have a doctor's appointment tomorrow for a routine baby check-up. Isabella is excited to go. She loves to hear the baby's heartbeat. The last time I was at the doctor's office for a check-up they gave me a coupon to Babies R Us for a free $25 gift card if you register. This is our third baby and we don't really need anything but Chris and I decided we would register for a few diapers and Dreft to get the gift card. Well, once we got to Babies R Us, we realized that we will actually need more then we anticipated. Raymond will not be out of his crib for awhile yet (I'd venture to guess a year) so we will need another one for this baby. We found a "mini" crib. It is the perfect size for what we need. It comes with a mattress but we need all new sheets to fit it because it's smaller. We also need a bumper. So we registered for a few things then found the mini crib in a better color at Walmart.com. So we registered for that too. Who knew we would need a registry?!?! It's become more of a reference list for Chris and I. We will start to buy a few things here and there.

Chris and I gave Sadie a bath today and decided it would be a good idea to give the two cats a bath too. We've never given them a real bath but we have used no-rinse shampoo. They both were a little oily and need it. So we clipped their nails first then got a hold of Sophie. She did much better then I thought, even though she didn't like it. Chris dried her off then got Chloe. She wasn't as cooperative. The poor thing was scared to death. She was making so much noise that Sadie sat outside the bathroom door and cried until we opened it. We got through it and now Chloe is super soft and fluffy. We are glad that we decided to give them a bath. I also started bathroom demolition today. Let's hope it keeps going smoothly! Good bye robins egg blue tile!

On a sad note, Mr. Bowtie died today. Chris gave him a monster cricket to eat last night and apparently it was too much for him. Chris was afraid to tell Isabella but she took the news well. She and Chris buried Mr. Bowtie outback. Rest in peace little buddy.

Until Next Time!

Lots of Love,
Erica

Buddy Walk Meeting

I went to the Buddy Walk meeting on Saturday. The Buddy Walk will go on as planned!!! Thank goodness!!! Chris and I were worried. The center is having a lot of trouble getting corporate sponsors because so many company's have cut their funding for non-profit donations. As an example, last year Walmart gave our walk $11,000. This year the most they would be able to contribute is $5,500. That's still a lot of money but half from the previous year. This is the type of problem which was making everyone on the Buddy Walk committee nervous. So we really hope to see everyone there! If you can, please walk with us or donate today!

Meet Morgan...

Morgan is 5 months old and is also a member of the Eastern Pennsylvania Down Syndrome Center. We went to a fundraiser today for her Buddy Walk team and it was a lot of fun. This is the second time that Isabella has seen Morgan. Both times she has wanted to bring her home! Please keep in mind that so many children like Raymond and Morgan benefit from the center!

Earlier in the week I took Raymond to see his surgeon. We had good and bad news. The good news is that Raymond won't be needed the one surgery we thought he would. Yay! The bad news is that the surgeon thinks Raymond's fundoplication procedure may have come unraveled. That is the procedure were the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus making it almost impossible for Raymond to throw up, reflux, burp, etc. It's a very concerning bump in the road. His surgeon has actually never had to go in and repair a fundoplication. Not that he can't, but that tells you how often it happens. We were told it was one of the rare side effects. Really Raymond? You had to be the one to have the rare side effect? That's my boy. Never a dull moment. The only way to tell 100% if it did in fact has come unraveled is to go in and look. Before the doctor does that he wants us to try a few things first to weigh out other possible complications. Hopefully we will get it figured out and he won't need corrective surgery. Having reconstructive surgery for this procedure is very risky and can lead to many other complications. We have total faith and trust in Dr. Arthur but I'm praying it won't come to that. We also see Raymond's oncologist on Thursday. I'll let you know how that goes.

On a totally different note...I am starting a list on the side bar of the blog for retail blunders. I am always catching mistakes at the register of stores or on my recipe. My mom keeps telling me I should keep track of it and I always mean to. So this is going to be my way of doing so. I'm going to add a few items to the list that I remember happened recently but we'll say the list start date is August 1st. Maybe this will make other people watch what the prices of the items they buy. Just because it says 30% off doesn't mean it rings that way. Figure it out before you go to the register, you'll be surprised how often the register makes an error. Also something as simple as the cashier scanning something twice. Or an item ringing up a totally different price then what is on the tag. Your waitress mixing up tables. So keep your eyes open. You'll really be surprised how often it happens!

On the way home from Walmart the other night we saw fireworks from the Reading Phillies stadium. Isabella told me to look over and watch them "splash in the sky". Isn't that a great description?!?!?

Schuylkill Valley Fair

At the last minute, we decided to go to the Schuylkill Valley Fair last night. It was only $12 to get in for all of us and that included all the rides and shows. Good deal! We didn't get there until 8:00pm so it was a little dark to take pictures. However, we were able to snap a few.

We stopped at a tent that had different stations for children to experience the life of a farmer. Isabella really enjoyed looking at the chicks and planting a cucumber. We brought the cucumber home but unfortunately it is too late in the season for it to grow fully. We will watch it sprout and read more about the life cycles of plants and vegetables.

She was showing me the balloons painted on her arm. Isabella also said this morning that she will never take a bath again because she doesn't want to wash them off. We'll talk about that later...

The kid in the picture with the blue shirt was having a terrible time with his cow. The cow had it's own agenda and it didn't include anything that the kid wanted her to do!

Isabella won a glow necklace at the bean bag toss. She thought it was really cool...

So did Raymond!

We also had fried Oreo's. Yummy!!!

2 Order's of Fried Oreo's and 1 Order of Fried Nutter Butters = $6.00

1 Frozen Lemonade from Alex's Lemonade Stand = $1.25

Watching Isabella wipe her powdered sugar on Daddy's Shorts = Priceless!

Isabella and Daddy got to go on a few rides. Isabella informed everyone that Mommy couldn't go on because she has a baby in her belly. What a character! It was really hard to get pictures of them on the rides. Here are the best two.

This picture of Isabella on the dragon roller coaster was taken before the ride started. She was the only one on the ride and once it started she was terrified. When the ride was over she kept telling me she was scared but very brave. Poor little thing! She was brave!

Oh yeah! We stopped at the goldfish game. You know, the game where you throw ping-pong balls and try to get them in a little cup of water to win a goldfish. Chris enjoys this game just as much as Isabella. He bought 12 balls. I picked up one ball and threw it. Of coarse, I got it in a cup. Go figure, the one person who didn't want to win a fish won one! Isabella was excited and Chris found it extremely amusing.

Until next time!

Lots of Love,

Erica

Grandma's Visit

My mom recently moved to North Carolina and came to our house for a visit. Isabella was very excited to see her. She arrived last Thursday. That Friday Grammy came over too and we took Isabella shopping for school cloths. Grammy bought Isabella wonderful school cloths so she will look great! Thanks Grammy!!!

Last Sunday we went to see my mom's friend Michael sing. Raymond was so sweet! He watched Michael so intently and clapped when he was done singing. It was super cute! Here is a picture of Michael and Raymond.

Michael is singing at a fundraiser for Raymond in September. If anyone is intersted in going, send me an email for all the details.

Later in the week we visited Lake Tobias Wildlife Park. It is a great place to take a family. The first thing we did was go on a safari. It was fun!

Isabella got to feed the llama's. FYI, Mommy doesn't like llama's. I let Grandma help her with that!

Raymond even got to feed the animals! When this steer stuck it's big tough out towards the wheat cracker he was holding, Raymond's face was hysterical! Too bad we couldn't get a picture from that angle. Also while we were on the safari we saw a few white tailed deer. They were kept separate from the other animals behind a high fence. The safari guide asked if there were any hunters on the tour. Isabella was the only one who raised her hand. The guide laughed and said "Okay!" I asked Isabella how big the last deer she bagged was and she stretched her arms out as wide as she could. Daddy would have been proud!

After the safari we walked around the zoo part of the park. These rat like creatures are called capybara's. They have extremely large teeth and I told Isabella the sign said they may bite so not to put her hands up to the fence. She was thrilled when she noticed the baby capybara's. They were really cute. We spent a lot of time looking at them and even made a second pass on the way to the reptile show.

The reptile show was next. Isabella told Daddy all about how "Cuddles" the porcupine stomped his foot and shook his quill's. She was very impressed with him.

I liked the two-toed sloth. There were two people doing the presentation. While the once lady was talking the other girl got out some fruit in a plastic container. She had her back to the sloth and he really wanted a piece of the fruit. She didn't notice his attempts to get her attention for he took his nails and pulled out her ponytail. I thought it was pretty funny. That what she gets for taking too long : ) When it was time to talk about the sloth everyone was warned not to walk too close to him on the way out because he likes to grab purses, backpacks, hats and pretty much anything he can get his "hands" on.

We also visited the petting zoo and fed the miniature horses our leftover cracker's from the safari.

We had a very fun day at Lake Tobias. We were all really tired afterwards so on the way home we stopped for pizza. Grandma stayed a few more days then went back home.

When we took Isabella to the dentist, Dr. Miller told us to buy her a spinning toothbrush. Ever since Isabella has been reminding us of this. Isabella saw a commercial on tv for a spinning toothbrush that you decorate yourself. So off to Walmart we went and found one. Isabella decorated it tonight and used it for the first time. She asked me if she could show it to all her new friends she is going to make at preschool. What a cutie!

As all of you know, we are participating in the Eastern Pennsylvania Down Syndrome Center's 11th Annual Buddy Walk. Our team name is "Ray of Hope". I am bringing this up because the walk is in jeopardy of not happening. This walk is the center's biggest fundraiser of the year. Thus far, with only a little over a month to go, there hasn't even been enough money raised to cover the cost of the walk. The center is having an emergency meeting next Saturday about the walk that I will be attending. I am asking everyone who said they would like to walk or donate to do so now. Please do not wait until closer to the walk. If you do it may not happen. Please sign up as a member of our team to walk. It's a wonderful experience! Also, please keep in mind that the center is so important to so many people with Down Syndrome and their families. They are a major support system and advocate for our children. So please donate what you can and sign up to walk with us. We would love to see you there! Thank you so much to those who have already donated!!! Follow this link to our team page -

I want to support Raymond and Team Ray of Hope!!!

On a side note, we were out shopping for sneaker's for Isabella on Sunday and saw a car with four tires that looked like this...

You need new tires!!! Yikes!!!

Also for those keeping track, I went to the doctor and had an ultrasound done and they only saw one baby. Sorry babe! Better luck next time : )

That's all for now!

Until next time!

Lots of Love,

Erica