And then there were 5...

For those of you who may not know, we welcomed the newest addition to out family on February 11. Lily Catherine was born at 9:58am weighing in at 8lbs. 2ozs. and 20 1/2 inches long. She looks just like Isabella when she was a baby! We are all so happy and excited about our growing family.

Thank you to everyone who came to visit us in the hospital. Also, thank you for all the cards, flowers and gifts. It has all been really appreciated. We have such wonderful family and friends!!!

Grammy sent us flowers with a big lily in the center. How pretty!

We've had a lot of company since Lily has arrived. The Friday after she was born, my grandmother, aunt, great-aunt and cousins came to visit and meet Lily. My cousin Ashley brought her daughter Melody. She and Isabella play so nice together. They are good buddies. I think this is such a cute picture of the two of them with Lily. Hopefully they will still be interested in her once Lily starts to get around by herself.

Ashley and my grandmother bought Lily this bouncy seat. She really likes sitting in it. It's very soft and cushy. My Aunt Linda made her the blanket she is covered with.

As you might have guessed, Isabella is crazy about her little sister. She is constantly wanting to hold her and snuggle. She is such a good helper and wants to be involved in everything. Sometimes Chris and I have to tell her to give Lily a little space. She's a love bug!

Raymond is very curious about Lily. I think at first he wasn't sure if she was real or a doll. He likes to peek at her when she's sitting in her bouncy seat. He's a little rough so we have to keep a close watch on him. We are working on being "gentle" with the "baby". He seems to be getting a little better with it every day. Isabella and I call him the little-big brother.

Lily's first church breakfast.

Raymond or Elton John???

Buddy, do you have to lay on the hairy dog bed???

I took Lily for her first doctor's appointment and when I got home Raymond was in a purple skirt. Isabella told me that he couldn't go to her tea party without a skirt.

On February 15, Raymond turned two!!! What a milestone for him! We were told he would never come home from the hospital. When he came home from the hospital, we were told he wouldn't live past a year. When he hit a year, we were told that getting to his second birthday would be nearly impossible. Now here we are...two! Raymond is the toughest and most brave little guy I know. I'm honored that I was chosen to be his mother. Happy Birthday Buddy!!!

Chris and I ordered Raymond a puzzle stool with his name on it. Isabella has one and he loves playing with it and taking the letters in and out. It came just the other day and when I put it down in front of Raymond, he was so excited! He immediately knew this was his stool. I guess we'll have to order one for Lily too!

My grandmother and cousin Ashley bought Raymond a singing and talking puppy for his birthday. He just loves it! There is one song in particular that he just can't get enough of. Check out his moves!

Until Next Time!

Lots of Love,

So Many Appointments

Raymond's appointments in Philadelphia last week were rescheduled. This poor kid will eventually get there. When I was talking to the receptionist at the oncology office, Jackie, she asked me what Raymond is doing now developmentally. After I told her all the new things he's up to (and in to) she said she can't wait to see him. She said she was going to tell all the girls in the office what's he's doing now. They are all such nice ladies! I guess you have to be to work in a pediatric oncology office. That takes a special person!

I spoke with Raymond's neurologist about his MRI results. He said that everything looked great! Yay! That was fantastic news! Dr. G. said he actually expected to see some type of abnormality since Raymond has been oxygen deprived so often. So at this point, we will keep giving Raymond his seizure medication and adjust it accordingly.

Now onto Raymond's cardiology appointment. We ended up being there for over three hours. Raymond was very ready to leave by the end of it. So was Isabella because she knew we were going to visit Mom-Mom afterwards. They started off by trying to do an echo-cardiogram. Raymond was not cooperative. He did not want that lady to touch his chest with that jelly even though it was warm. She was able to get a few pictures of his heart but not many. Now we will have to take him back to Hershey for another echo-cardiogram but this one will be under sedation. The doctor really needs to get a better picture of the heart. For those who may not know, Raymond has an ASD (Atrial Septal Defect). So what is an ASD?

Here is a brief explanation: Normally the heart has four chambers: two upper chambers known as atria that are separated from each other by a fibrous partition known as the atrial septum and two lower chambers known as ventricles that are separated from each other by the ventricular septum. Valves connect the atria (left and right) to their respective ventricles. A small opening between the two atria is present at birth. Shortly after birth, the atrial septum gradually grows and seals this opening. In infants with atrial septal defects, the atrial septum may not close properly or may be malformed during fetal development. So in layman's terms, Raymond has a hole in his heart. In these disorders, the opening between the atria persists long after it should be closed, resulting in an increase in the workload on the right side of the heart and excessive blood flow to the lungs.

Since the right chamber of Raymond's heart is larger, it makes his heart work harder and burns his bodies calories at a might higher rate then normal. This is one of the reasons that Raymond is still so small. The cardiologist also diagnosed Raymond with pulmonary hypertension. Caused by the high pulmonary pressure in his lungs, the blood flowing from the right ventricle to the left ventricle is backwards, causing unoxygenated blood to be pumped to Raymond's body causing cyanosis (blue skin). Raymond's little feet turn blue all the time. The pulmonary hypertension makes open heart surgery even more urgent. The only hesitation that the cardiologist is having is that Raymond is so small. She said normally they would put a G-tube in the patient (which Raymond already has) and give them lots of extra calories to try to beef them up. Raymond has never been able to handle more then 8 ounces of food at a time. Also, when his calories are increased, his body immediately gets rid of them (diarrhea before the feed is even done). So what to do? His heart is burning a lot of extra calories and his body doesn't want anymore. The surgery can still be preformed on Raymond at his current size but the doctor's would prefer him a little heavier. We now need to go back and see the GI doctor to see if he has any suggestions on how to get Raymond's body to except the calorie increase.

On Sunday we went to visit Grammy. Everyone was ready to go!

We met her at The Promenade Shops so Isabella could get her hair cut at Sweet 'N' Sassy - one of her favorite places!

Afterwards, we went to Grammy's house. This was the first time Isabella, Raymond and I had been there. Aunt Theresa and Uncle Roy came over and we had a little birthday party for Raymond.

Raymond has been crawling for a little while now. He is now at the point were he is crawling very well. I was in Isabella's room putting something away with her and I heard a noise at the bedroom door. When we turned around Raymond was sitting there with a HUGE smile on his face. It all the sudden occurred to him that since he can crawl, he doesn't have to stay in the living room (or whatever room we put him in). I thought it was the cutest thing! They say a face says a thousand words and boy his did! I could see the gears turning. When I told Chris, his reaction was to say lets go to Babies R Us and buy a few gates.

Raymond also pulls himself up on everything!

Umm...excuse me? Where do you think you're going mister?

We recently got an enrollment form for Isabella's preschool for next year. We really wanted to put her in kindergarten next year but since she won't be 5 until November she misses the cut-off. I was torn whether or not to send her back to preschool because even though she enjoys going, she tells Chris and I she's bored. I spoke with her teachers about it and they said that can definitely see her getting bored because the "other kids aren't up to her level". They are going to start to give Isabella harder work and continue to do that next year if we send her. So Chris and I have decided we will send her. I was very glad I brought it up with her teachers. We have also signed Isabella up for swim lessons. They begin at the end of March and she's very excited to get started.

Raymond and Isabella had a pulmonology appointment yesterday. Isabella was diagnosed with mild asthma. Chris and I were pretty sure she had asthma because whenever she gets a cold (which isn't often) she gets a cough that doesn't seem to want to go away. Raymond was there for a routine visit. The pulmonologist wants to scoop his lung again and clear out some of the "junk" in it since Raymond can't clear it himself. She is going to coordinate that with his echo-cardiogram so he only has to be sedated once. She would also like Raymond to have a sleep study but that will have to wait until his heart issues are better controlled.

Until Next Time!

Lots of Love,

Lois

You might remember me posting about Lois in October. She had leukemia. She kicked it. And then it relapsed. Lois doesn't have leukemia anymore. Lois died yesterday, peacefully at home. She was just three years old.

It's difficult to explain to those outside the Down syndrome community that when a child with Down syndrome dies, we feel it at a personal level, even if we didn't know the child in real life. Maybe that's because, as parents, we exert a lot of energy advocating for our kids. Yes, we all do that for our kids, whether or not they have Down syndrome. Maybe it's because our children with Down syndrome are just a little more "vulnerable" than average. Maybe it's because we have a pretty good idea they are going to experience discrimination and bullying in their childhood and beyond. Maybe it's because we KNOW those things and we are passionate to try to CHANGE those things. Maybe it's because we spend so much time helping them reach milestones that typical kids reach without much effort.

I feel intense sadness over Lois' passing. I guess it's because it's my worst nightmare for Raymond. Rest in peace, sweet little girl. Enjoy your snuggles in Jesus' lap. I can't imagine the depth of sadness your mommy feels because you're not sitting in HER lap today.