“The only disability in life is a bad attitude.” -Scott Hamilton

"The only disability in life is a bad attitude." - Scott Hamilton

Monday, August 30, 2010

No Rest for the Weary!

Thursday of last week was a busy one for us. Raymond had therapy in the morning and then soon afterward Daddy got home from work early. I had a doctor's appointment - a long doctor's appointment. Shortly after I got home we had to go to Isabella's preschool open house. Isabella was jumping out of her skin the entire way there! We met her teachers and her other classmates. She is really looking forward to going tomorrow. I can't wait to hear all the stories she has to tell me (and the stories the teachers have to tell me!). I'll let everyone know how it goes.
Raymond is about to crawl any day! He's getting so close and trying so hard. I've been spending a lot of time on the floor with him, encouraging him and demonstrating...along with Isabella. Once he starts crawling - watch out! I'm going to be exhausted! He will be all over this house. Note to self, dig out baby gates. I've also been trying to feed Raymond small amounts by mouth. None of his doctor's are really on top of it and I think he should be at least getting used to having something in his mouth. He'll never learn if we never try. I normally do this with him about twice a week. Sometimes he does really well and other days he takes one small spoonful and chokes. My goal is to get him to eat 5 small spoonfuls without complication. Like I said, some days are good and others aren't. It's not always easy but it is always messy!

You can see how stained his bib is from last time!

Then we have this problem...fingers in the mouth.

This is what he was eating that day.

It has been a very action packed weekend for us! I would have been fine with a sit around do nothing type weekend but no such luck. So let's begin with Friday and the fire in our kitchen. I put a pan of oil on the stove to heat up and went in the living room to help Isabella with something. I was in there with her for only a minute or two and I saw white smoke in the kitchen. I went out and the pan was really smoking. I pulled it off the hot burner and a very small little patch had a flame. All the sudden the entire pan caught on fire. I went into full panic mode as Isabella stood in the doorway to the kitchen saying, "Mommy, I think that pans on fire!" Yes honey. "You should put that out!" Yes honey, thanks for the advice. "It looks like lightning in a pan!" Okay honey, go sit with Raymond. I didn't have anywhere to put the pan other then on the stove. I was afraid to put it in the sink because we have a window right behind and I didn't want the curtain or the screen to catch on fire. I thought about taking it outside but when I picked the pan up the flames got bigger and shot into the air. It didn't burn my arm but it made it extremely hot and I set the pan down or else it would have burnt me. I fumbled under the sink for the fire extinguisher and finally (after what seemed like an eternity) found it. I couldn't remember if it could be used on oil and I pulled the pin out but couldn't get the other piece to pop off. Then I thought to throw salt on it but the cabinet with the salt was on fire. So that idea didn't help. I took a lid out and stuck it on top thinking it would stop but instead the flames came out from under the lid and made it worse. Right about this time Chris got home and grabbed the fire extinguisher. When he sprayed the pan, instead of making the fire go out it splattered it all over the place. It did however make the flames go down enough that he could take it out back and throw it on the concrete patio. By this time, I grabbed both kids and the dog and took them outside and was on the phone with 911. A police officer got to our house in record time and helped Chris put out the fire. Two minutes later there were four firetrucks in front of out house. Poor Sadie was having a heart attach watching all these strange men run in and out of or house. Smoke was pouring out of all the windows. It actually looked like our entire house was on fire. The fireman quickly put fans all throughout the house to remove the smoke. By this time, Isabella was telling ALL our neighbors that our "poor microwave melted". Luckily the fire was quickly contained and our whole house didn't burn down! One of the volunteer fire fighter's told me that Chris must have been standing too close to the pan when he tried to use the fire extinguisher since it spattered and didn't go out. They also told me that kitty litter will put out almost any fire. Good to know! So we are going to keep a small plastic container of it under our sink from now on. Everything in our kitchen was such a mess. Things either had a layer of soot, fire extinguisher powder or both. I had to wash everything and we threw a lot away. Hopefully I will hear from the insurance adjuster tomorrow. Every time we go into the kitchen we find something else that was damaged. I sure hope they don't give us a hard time! This is a picture of part of the microwave and you can see a small portion of the burnt cabinet on the side.

Saturday started off a normal day. Then in the evening I had to take Raymond to the emergency room. He was sitting in his exersaucer had started to shake uncontrollably. Chris and I were fairly certain he was having a series of seizures. At the hospital they took blood, and x-ray and CAT scan. The CAT scan was not clear because Raymond was moving around too much to get a clear picture. He was strapped down but was still able to move his head just enough to interfere. The ER doctor said he couldn't find any signs of what caused it but felt Raymond should have an MRI at the children's hospital and told me to have our pediatrician arrange. Then we were sent on our way. I took Raymond to see Dr. Haggerty today and she was not pleased that they didn't keep him overnight for monitoring. She said she has no doubt he had a series of seizures and she wants us to take Raymond to see the Neurologist at St. Christopher's. So I called to make that appointment when we got home but the office was already closed. Raymond really hasn't been himself so hopefully they can get him in soon. In the meantime, if it happens again, we are to take him straight to Philadelphia to be admitted.
For the past few days Isabella has wanted to watch Three Bears and a New Baby. Her Grandma and Grandpa bought it for her when I was pregnant with Raymond. She said she wants Raymond to watch it to be prepared for the baby. She's so silly! The funny thing is, there is a segment in the movie where they visit a family expecting a baby. Their third baby actually. I never noticed it before now but the sister has Down Syndrome. Isn't that something? I never noticed while we were anticipating Raymond. I just remembered the cute girl with glasses. I find it very ironic. By now I think I have the movie memorized. At least when Isabella's at preschool I'll get a break from it!

The fantastic big sister!!!
Until Next Time!
Lots of Love,
Erica

Monday, August 23, 2010

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

Monday, August 16, 2010

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.

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!

Sunday, August 15, 2010

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

Monday, August 9, 2010

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?!?!?

Thursday, August 5, 2010

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