Friends

We went to visit our friends on Monday. They too, have a special little one. Morgan (16 months old). Some of you might remember seeing pictures of her from the Buddy Walk, Christmas party, etc.. She is SUCH a cutie!!! It was funny to see how much she and Raymond have in common. For example, the way they crawl and use the same gestures and noises to communicate. This was the first time we've seen Morgan since Christmas and she has become such a little lady.

The girls.

Isabella, Morgan, Crystal and Lily

As you can see, Lily and Morgan are very close in size. Morgan is a peanut just like Raymond. Doesn't she have just the cutest little face?!?!?!

Michelle, Morgan's mom and I were joking that maybe someday we will be in-laws.

Raymond also really likes Morgan's bother Dakota. Isabella and Lily both love Crystal. She's so good with the smaller kids.

We had lots of fun!!!

Until Next Time!

Lots of Love,

Picnic

Last Friday we went for a picnic at the gardens at the Reading Museum. We have a family membership and really enjoy going. For some reason the bugs would not let poor Raymond alone. They were all but swarming him. This just proves he is extra sweet!

We met a little boy and his Grammy inside the museum. His name is Ian. I tried taking a few pictures of them together but since you aren't allowed to use a flash in the museum and they never stopped moving, it was hard. If you didn't already know, Isabella is a very touchy-feely little girl. She likes to hug, kiss, hold hands, snuggle, etc.. So she was delighted when Ian asked if he could hold her hand. They walked around the entire museum like that. It was really cute.

As a side note, I stopped at a garage sale the other day and bought all of this for $2.50!!!!!
3 Pairs of Shorts
14 Dresses
2 Special Occasion Dresses
4 Skirts
5 Tops
1 Sweater
1 Pair of Pajamas
1 Onsie
and
1 Outfit for Lily

That's about $0.08 each! Yahoo!!!

Until Next Time!

Lots of Love,

2 Stories

I have two things to share with you tonight. The first story actually happened to a friend of ours through the Eastern Pennsylvania Down Syndrome Center. Dorney Park denied their daughter, Isabella, entrance onto a ride. Please keep in mind that her mother was going to ride with her. The attendant didn't want to take the time to really find out if Isabella was capable of riding. I totally understand that rules are in place for a reason but this person wasn't giving this family a chance. Click on Isabella's picture to read the news story. Also, I have a HUGE problem with GQ magazine right now. They recently ran a story about the 40 worst dressed cities in America. Okay. Not a topic that would normally interest me but this article not only got my attention, it all but smacked me in the face. The writer of the article wrote, "Boston suffers from a kind of Down Syndrome, where a little extra end up ruining everything." So here is what I want to know. WHERE was this guys editor? WHY did he find that analogy funny/clever? WHY did he think it would be acceptable? I'm normally (in my opinion) pretty level headed about these things. "These" things meaning issue's regarding Down Syndrome. Even the Dorney Park story - if the attendant was unsure what to do, then keeping Isabella off the ride was the right thing. They didn't want her to get hurt. Safety first is what's drilled into their heads. I think there was a better way of handling it, like calling a supervisor for help. If I would have been in that situation with Raymond, I would have requested that a supervisor be called. But this GQ story, REALLY makes me MAD. How horribly insensitive and outrageous. The article was revised but GQ has thus far not released any type of public apology. I think they should.

Postponed

Raymond will not be having any procedures on Friday. They have been postponed. I spoke with his Pulmonologist at length on Friday. She told me that she had been speaking with the anesthesiologist and cardiologist. Raymond's new cardiologist feels that they are missing something. He believes there is something else wrong with Raymond's heart. This theory is based on Raymond's medical history and recent echocardiogram. The three doctor's together feel is would be "reckless and potentially fatal" to sedate Raymond at this time. The game plan is to do a sleep study (which was already planned) and to run an EKG all night. They want to see what his heart does while he is sleeping. After that, more testing will continue. Based on these findings, we will go from there. However, if Raymond needs emergency gallbladder surgery they will do it. Emergency being that Raymond is in excruciating pain or the gallstones totally block the bile duct. As soon as the cardiologist finds out more information, he will reschedule all the surgeries. It sounds like Raymond's open-heart surgery might be moved up (originally at the end of August beginning of September). So, Raymond's summer continues to be non-stop action! Despite all this nonsense, he remains awesome!!!!

The man who originally came to help deliver Raymond's stroller was back on Monday to repair it. It didn't go very smoothly and two parts had to be ordered. Despite that, Raymond was more then happy to see him. He brings tools...inside!!!

It's been hot, so we've been swimming.

We found Raymond a one piece bathing suit on clearance at Gymboree. Very exciting! He looks so cute with nothing on his face. Too bad it had to go right back on once we got inside.

Not just anyone can pull off a two piece suit!!!

As evident from this picture, we don't feed Lily enough...SO...she has to eat her toes!

Oh, hello! I didn't realize anyone was watching.

***

I can't believe it but back to school is quickly approaching. I keep getting catalogs in the mail featuring back to school clothing. We are going to have to get Isabella some fall and winter school cloths. We'll have to start putting some money aside for that.

Speaking of catalogs, the American Girl Doll catalog came in the mail yesterday. Ever since Isabella won an American Girl Doll from Borders, she just loves everything American Girl. Whenever we get the catalog in the mail she squeals and can't wait to look through it. Today she made a wishlist online. A.G. stuff is expensive but I will say it's very good quality. Isabella's Grandma bought her a few things from the catalog last Christmas and it's all so nice. Isabella told me she is going to save her money and buy something and have it shipped to our house.

I also wanted to point out that I started to keep track of my coupon savings on the blog. Paper coupons only. I'm not including store card savings. This is mostly for myself and my mom. We always talk about the good deals we get with our coupons. I love to use coupons and always have. (No, I'm not one of those crazy couponers like you see on TV.) I'm interested to see what the savings will be over the course of a year. So if you're ever interested you can take a peek.

I start my new part-time job on Saturday. Wish me luck : )

Until Next Time!

Lots of Love,

It's July Already!!!

We've been staying busy with lots of doctor's appointments and therapy sessions. Raymond's surgery is approaching quickly. Hopefully we will find out when they are going to remove his gallbladder soon. Chris and I were hoping the surgeon could do it at the same time they do the other procedures, but it doesn't look like that' possible. So hopefully a few days before or possibly a few days after.
We had Raymond to the hospital last week because we thought he gallbladder possibly ruptured. Thankfully, it didn't. We do have to keep a close eye on him though. If he has a persistent fever that Tylenol won't help, he might suffer from Choledocholithias. This is a big worry right now. In a nutshell, it's gallstones in the bile ducts. (We know Raymond has at least 8 gallstones.) This can be very painful. The stones can block the neck of the gallbladder causing distention and inflammation (cholecystitis). In the common bile duct it can cause a backing up of the bile into the liver resulting in obstructive jaundice or into the pancreas causing acute pancreaitis. One of the worrying factor's for Chris and I is that Raymond has such a high tolerance for pain. By the time he shows symptoms of pain, it's excruciating for him. Thankfully he's at home and we are able to love and snuggle him until we get this all ironed out.

Since my last post, Chris got a new recliner for Father's Day.

Sophie thinks it's for her.

***
I took Lily for her 4 month check up on Thursday. (She's 4 1/2 months old already!) She is doing fantastic! She weighs 15.2lbs now. I can't believe how much she's like Isabella. Isabella was also a big girl (even though I didn't think so at the time) and hit 20lbs. pretty quickly. Then she stayed 20lbs. for a LONG time. I think that's exactly what Lily is going to do. She is rolling all over the place, both ways, and holds her head up for long periods of time. Dr. P. said most babies don't do that until 7 months. So, again, she's on the same path as Isabella!
I LOVE! LOVE! LOVE! THIS LITTLE FACE!!!!!!!!

This face too...even though it's missing the oxygen!

(We've been having a very hard time keeping it on his face)

Raymond loves reading and flipping through books. I think Chris read him Clifford about 8 times the other night while I made dinner : )

On Saturday we went to Chris' Aunt Anna's house for a picnic/birthday party.

Aunt Anna's Pond

Opening Gifts

The kids were waiting for fireworks.
Jimmy, Isabella, Ashley and Ryan
***

Afterwards we went to the Promenade Shops. Isabella wanted to go into Sweet N' Sassy. We explained to her that we could go in but since we didn't have an appointment she wouldn't be able to get her hair cut. She was disappointed but still wanted to go in and look around. When we went in, the only people there were the three girls working. We thought maybe they were closing early because of the holiday. They explained to us that the store had been dead the entire day. Apparently the same thing happened 4th of July weekend last year. So Isabella got her hair washed and cut after all. She was thrilled!


Afterwards she walked the runway. Normally there are birthday parties going on in the back so she's never been on the stage before. She was delighted, again!

Daddy even walked the runway with her. No, just in case you were wondering, he didn't have his hair cut : )
We spent the rest of the weekend organizing our garage. Not very exciting but very needed. This is what happens to poor Raymond when he is left unattended for any period of time with Isabella.

Grammy and Aunt Anna stopped by. Grammy dropped off the Bumbo seat she bought for Lily off of her Amazon Wishlist. She loves it!

Lily really enjoys sitting up so I wasn't surprised that she liked it so much.

She also loves these musical flowers. She gets so excited and wiggly when she sees them. Too darn cute!!!

Raymond tested it out too.

We set off some fireworks out front to celebrate Independence Day. Then we went outback and made s'mores.

Isabella was still dressed up. She's so silly!

Raymond received his helmet. It's too big. The smallest size was an XS and he is still a little to small for that. At least he'll grow into it. It sure was a pain to get the insurance company to pay for it so we want to keep it as long as possible before we have to ask for another one! (Hopefully we won't need another one.) He sure does look cute in it!


My girls! They are both so sweet. We've been enjoying a lot of time together as a family. That's our favorite thing to do - be together. The 5 of us. 6, if you include Sadie : )


She's a good girl too.


Until Next Time!
Lots of Love,