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

Birthdays, Boo-Boos & Bullfrogs

Last Friday we went to visit my friend Nikki while she was staying with her mom for a few days. Nikki and her family live in Kentucky and will actually be moving back to Pennsylvania in August!!! Yay!!! We also celebrated her son's first birthday.

Evan liked Raymond's toy

Buddies!!!

Nikki and Raymond

Raymond's one true love (seriously!) - Brooke

Vrooom!!!

Evan didn't want to smash his cake even though his Grammy made it especially for him. He was being so careful with it. He took the decorations off the top but didn't want to ruin it.

His cousin Shea thought he was taking too long and took a small taste.

We had lots of fun visiting!

Monday was to be the start of a pretty easy week. Well that didn't exactly go as planned. I heard Raymond wake up and went into his room to get him ready for therapy. When I walked in he was on his belly in a puddle of mucky, slimy, stinky formula. My initial thought was that he pulled his tube apart in the middle of the night. It would not be the first time. I flipped him over onto his back and the poor little guy was shivering because he was cold. I don't know why he hadn't cried sooner or at all to let us know there was a problem. Anyway - I saw his tube was still connected and I didn't understand where all the mess had come from. I thought maybe the tube had a hole in it (maybe he bit it with his 2 razor sharp teeth?) but the machine would have beeped if that were the case. So I unsnapped his outfit to get him cleaned up and then I saw it. With a gasp, I realized that his feeding tube had pulled out of his stomach. The entire thing. I also didn't know how long it had been out. An hour? Three hours? Nine hours? I had no idea. I called the children's hospital and spoke with the on call surgeon (since the surgery offices were not open yet) and he said I needed to bring him down to the hospital quickly. He actually said that after he asked me if I had tried to stick it back in. Ummm...no, I didn't. He also said that if a local hospital would do it we wouldn't have to make the trip. He was going to notify the ER that we were on the way and to call him once we arrived. I called Chris to come home and through an overnight bag together for all of us. While we were waiting for Chris I called both local hospital ER's and neither one of them would reinsert a feeding tube in an infant. Lovely. So when Chris pulled in the driveway we through everything in the car and we were off. Once we made it to the hospital (it felt like it took forever!) we were in a private room in the emergency department in no time. So this next part is going to be detailed...if you get squeamish you might not want to read it. Fair warning. The surgeon came in and told us he would dilate the opening to get the tube back in. When a person has a gastric feeding tube, the stomach is cut and brought to the front of the belly wall. There it is attached and the gastric tube is surgically inserted through the wall into the stomach. Since we were not sure when Raymond's feeding tube had come out there was a possibility that the stomach had fallen away - this is why it is vital to get to a hospital quickly - from the belly wall and he would require another surgery to repair it. Luckily for Raymond that did not happen. But I still was not prepared for what the surgeon was going to do. Raymond's feeding tube is a size 14. When the surgeon said he would dilate the opening he meant that he would take a size 10 tube, put it in then take it out to make the opening slightly bigger. That would then be repeated with a size 12 and then the size 14 would be permanently put in. Well, it was awful. I have never seen Raymond, or any baby for that matter, scream in pain the way he was. I honestly thought Raymond's eyes were going to bulge out of his head. He was obviously in excruciating pain. I was holding his arms and legs down because Raymond was trying to kick and push the surgeon away. I felt helpless. He was looking at me like do something. Between the screaming and the blood I was having a really hard time. It was the first time I wasn't sure if I was going to be able to make it through the procedure. I've seen a lot done to Raymond. More then most parents will ever see their children go through in their entire lives but this was borderline too much for me. They allowed us to go home the same day and poor Raymond was exhausted. He had a slight fever that night and we weren't sure if it was from the stress of the day or not. My hope was that he would wake up in the morning fine but that wasn't the case. He still had a slight fever. I started to worry that he may have gotten some formula in the open G-tube sight and some bacteria was growing. The last thing Raymond needs is a staph infection. He has been a little warm again today but more himself. If he wakes up tomorrow with a fever, even if it's 99.9 I am going to call his pediatrician just to be on the safe side.

On a brighter note...

So I had the discussion with you before about the bug box. We always have it handy. Chris and Isabella are constantly on the watch for creatures to put in it. Meet Mr. Bowtie...

Daddy caught him just before he fell victim of the lawn mower. Isabella thought he was a bullfrog. Daddy went and got his book, The National Audubon Society Field Guide to North American Reptiles and Amphibians, to identify what type of frog we had. He in fact is a wood frog.

I was then asked if we could keep the frog for a day or two. A day or two...hmmm...fine. Luckily we had an empty Snyder's Pretzel container in the recycling bin.

Wait a second, if we are only keeping him for a day or two why in the world are you getting that out?????? Hello? Anyone?Don't worry Mommy we know what we are doing! What do you think Raymond?Great, 3 against 1. So now the frog lives in Raymond's room. How did this happen?Oh yes, I remember. A lot of smiles and pleases. I'm a sucker for all three of my babies!

After dinner tonight Chris and Isabella went outside and caught a cricket to feed the frog. They stuck it in his "habitat" as Isabella calls it and we all watched the frog eat him. Pretty cool.

P.S. Thanks for sanding for me babe!

Until next time!

Lots of Love,

Erica

4th of July Weekend

I hope that everyone had a safe and happy July 4th weekend. We were very busy. We headed down to my aunt's house on Saturday to put a permanent step out front and a handrail up. There were a lot of other miscellaneous things to work on too. We ended up being there for 11 hours. Much longer then we thought. Meet Sweetie...

He is one of my aunt's cats....and he is huge! It's hard to tell in this picture how big Sweetie is. He weights over 30lbs! I saw him run for the first time this weekend. That was funny! There was a whole lot if jiggling involved!

We found this outside my aunt's house.

We put the praying mantis in Isabella's bug box and she enjoyed watching him for a few hours. Then we set him free. We never go anywhere without the bug box. According to Isabella, you never know what you might discover!

Chris and I weren't able to get everything done at her house on Saturday so we ended up having to go back down Sunday. When we woke up Sunday morning, we found that Raymond had pulled his feeding tube apart sometime in the middle of the night. For those who don't know, Raymond gets fed three times during the day then over the coarse of ten hours at night. This isn't the first time he has pulled the tube apart. We've tried taping the tubes and other things but Raymond's very strong and very determined. So we started with an early morning bath.

Raymond looks like he is about to slip under the water in this picture. The bath tub wasn't that full, he just likes to slide himself down.

Thanks Daddy but way to early in the morning to take a picture of Mommy!

All clean! Isabella is making Raymond laugh. That's her hair at the top of the picture.

After we left my aunt's house on Sunday we drove home and were able to see lots of fireworks. Isabella loves fireworks. She really enjoyed watching for them in the sky.

On Monday we went to the Kutztown Folk Festival with Grammy. It was very hot!

A man from WFMZ filmed us going through the misting station and asked if he could air it on TV. If I can find the video clip, I'll post it.

Raymond was extremely hot & sweaty. He had enough! So we headed back to the car.

But not before a quick stop at the kettle corn stand for Daddy.Then everyone fell asleep on the way home.

Later that night Chris came in the house after walking Sadie to see where Isabella was. He had something in her bug box he wanted her to see. A toad!

As you can see, Sophie was also very curious about it!

Then we set him free.

Chris happened to buy this book at Barnes & Noble earlier that evening. This was the perfect opportunity to flip through it and learn more about the toad we just set free. Chris and Isabella looked at the book for awhile together.

Since I mentioned Sophie, I'll tell you a little about her. She's mean. Not to me but to pretty much every other living thing. She puts up with Chris, Isabella and Raymond because they live with me. I love her despite her grumpy attitude with other people...especially strangers. When we got home from Barnes & Noble I found her laying on the table. When I took a closer look I saw this was what she was laying on...I told her she wasn't aloud to try and sell Sadie. Sophie resents the fact that I insinuated she would do such a thing. But if I get any calls about a dog for sale, I'll know why!Besides, who would want to get rid of such a sweet, gentle, good and very patient dog?

Here are two video links from WFMZ for you to check out if you're interested.

Eastern Pennsylvania Down Syndrome Center's Summer Camp "Loose the Training Wheels"

(we are so excited that they featured the center!!!)

and

Me! at the Kutztown Folk Festival

(they didn't put the kids in the video but I'm in it right at the end - why I don't know because the kids are MUCH cuter!)

Until next time!

Lots of Love,

Erica