Reflecting Back

I was recently reflecting back over the past two years of Raymond's life with the celebration of his 2nd birthday. The ups and downs, the highs and lows, and the laughter and tears. Let's look back at few pictures of when Raymond was in the NICU.

As you look at the pictures, you'll notice his rash gets better and worse. The rash and sores were caused by the Leukemia.

We spent three long months in the NICU with Raymond. His fate unknown. Every single day of that three months was a roller coaster of emotions. I remember asking Ellie (Grammy) if people even have funerals for babies. She offered to let us bury Raymond above Oma or Ray. That was our plan because that's what we were told to do. Make his final arrangements. Little did all those doctors know, Raymond had his own plans! I took the above picture the first time we stayed at the Ronald McDonald House in Philadelphia (we've stayed a total of 16 times!). I took pictures of the entire house to show Ellie and my mom. This picture in particular stirs up a lot of emotion for me. The pictures on the wall (there are more out of the shot) are all children who stayed at the house after it first opened. I have been privileged enough to meet almost all of them on one of our many stays. What saddens me, is that most of them have since passed away. There are only four children on the wall who are still with us (two of which are twins). I thank God that Raymond is one of the fortunate ones. We are so proud to be his parents!!!

And look at him NOW!!!

Until Next Time!

Lots of Love,

Growing So Fast!

Hi Everyone!

Lily was three weeks old yesterday! Wow! Where did that time go? She is doing so fantastic. At her doctor's appointment on Tuesday, the doctor was thrilled with how she is doing. When Lily was born she weighed 8lbs 2ozs. When we left the hospital she was 7lbs. 6ozs. At her very first doctor's appointment she weighed 7lbs. 14ozs. On Tuesday she was 9 pounds 4 ounces! She's always eating...which is a good thing. Yes, I nurse her. I nursed Isabella until she was 18 months old and donated breast milk the entire time. I weaned her at 18 months because Chris and I wanted to have another baby and we knew it would be a little harder to conceive if she was still nursing. So Isabella and I went to visit my friend Nikki when she still lived in Kentucky. A vacation, in my opinion, is the best way to wean a baby. I was able to distract her from nursing with no problem.

I've had a lot of people email me asking about Lily's delivery. I didn't know people were so interested. So I'll share a little of it. No, I wasn't afraid that Lily would have Down Syndrome. The odds were so slim. I was however a little worried that my pregnancy would hit 30 weeks and my body would say, okay, time to get this baby out! Thankfully, that didn't happen. Lily was born via C-section. This was my third C-section and I knew it was coming. I opted not to have a natural birth with Raymond and Lily. I was fearful of the complications one can have with natural birth after having a C-section. I must say, I wasn't disappointed not to be in labor or hours. All I had to do was show up at my scheduled time and lay there while someone else did all the hard work. Easy if you ask me! I was up an walking around a few hours later. I had Lily on Friday and went home on Sunday. It's been a blast ever since. Once when I was pregnant with Raymond, I was watching a birthing show on TLC. The featured couple was having their fourth baby. I remember the husband said having baby number two was the hardest. After that, it's pretty easy. I doubted his fatherly wisdom at the time. Our second birth obviously didn't go as we expected. Even with all the complications, once we got Raymond home, I thought it was going to be much harder then it was. I was remembering the father from TLC. It was, well, easy. He just fit right in. Now with Lily, I feel the same way. I thought I might have a hard time dividing my time between three children but I don't. Maybe the TLC dad was partially right. Adding baby number three has been a breeze. All three kids are great!!! We are truly blessed!!! (And yes, as crazy as it might sound to some, I'd have another one.)

Isabella and I made mermaid magnets. We molded them, waited for them to dry, then Isabella got busy painting. The magnets didn't stay on the backs very well so I have to glue them on today for her (we used self-stick magnet tape the first time). She's my crafty girl!

Since Raymond is cruising everywhere, we keep the doors in the hallway closed. He stays out of trouble that way! : ) In this picture he's sitting outside of Isabella's room because he knows she's in there. He was banging on the door like a crazy man until she opened it and let him in.

Friday was a nice day outside so I decided to load everyone in the car, including Sadie, and go to the Daniel Boone Homestead. It's such a nice place to walk around. I took a plastic zip-lock bag and Isabella filled it with things from our "nature walk".

Lily and Raymond were riding in our new triple stroller. It's considered a triple because there is a seat with a lap belt that pulls out in the back for Isabella to sit on.

Raymond has been having a lot of trouble with seizures again. We are hoping he just outgrew his dose of medicine. His neurologist has increased the amount but it takes almost a week for it to take full effect. I hope it helps because the seizures are very intense. Much more so then before. Yesterday we got the delivery of Raymond's medical equipment. His new car seat is huge! Chris put it in the car and Raymond loves facing forward now. His new stroller is going to be a big help too. It has an IV pole and a bracket to hold his oxygen tank. They actually forgot to order the oxygen tank holder but said it should be here within two weeks. It's a $5,000.00 stroller. Yikes! Some people's car's didn't even cost that much.

This morning Lily and I went to the Eastern Pennsylvania Down Syndrome Center's Membership Meeting. Chris and I decided it would be better if Raymond stayed home because of the seizure problem. We are used to seeing him have seizures but it can be pretty upsetting to others. I'm on the Buddy Walk Committee again. Hopefully I can count on everyone's support again this year! : )

Until Next Time!

Lots of Love,

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.