On a Brighter Note

Since I left you on a little bit of a sour note with my last blog post, I thought I would share something uplifting. I think so anyway. This article and photo are both from http://www.disabilityscoop.com/ - a wonderful website and resource!

"The first model agency representing people with Down syndrome has been launched to coincide with World Down Syndrome Day.

Some 20 people were selected, aged five to 33, after experts in the business rated their self-confidence in front of the camera. They will be available for photo shoots, advertising, catalogues and catwalk shows as part of the I'm Able 2 Model venture, and will be paid similar fees to other models. Sheila Campbell, chief executive of the Down Syndrome Centre, said people with the disability needed to be better represented. "For many of us, the experience of interacting with a person with Down syndrome has been increasingly normalised in recent times," Ms Campbell said. "They are active contributors to communities on many levels and I'm Able 2 Model will now provide a platform for them to be portrayed alongside their peers in media representation." Ireland has one of the highest rates of people with the disability at one in every 500 births, as opposed to one in 1,000 in countries such as the US, Spain and Norway. The company will be operated in conjunction with 1st Option Model Management, based in central Dublin and headed by Jules Fallon. Ms Fallon said she did not hesitate in getting involved in the project. "Children with special needs such as Down syndrome have dreams and aspirations just like the rest of us, as do their parents," Ms Fallon said. "Society no longer has a one-size-fits-all mentality so it's time we started to celebrate that people come in all different shapes, sizes and abilities. "We are very excited about this project and are looking forward to opening new doors and revenue streams for people with Down syndrome.""

I find it interesting that in Ireland, Down Syndrome occurs in about 1 out of every 500 births. That’s nearly twice the prevalence rate seen in the United States. I hadn't known that prior to reading this article and I'm curious why that is. I'm going to research that further and see if I can find out additional information. It might be something as simple as woman in Ireland tend to wait until they are in their mid to late 30's to have children. I don't know but I'm going to try and find out!

Until Next Time,

Lots of Love,

Storming the Gates

This post is going to be difficult to read. There are some children who are heavy on my heart and we need to be storming the gates of heaven with prayers. Be advised that there is a photo below that you may not want to see. But really...we NEED to see it. And we need to DO something about it; not all of us are called to help her family directly, but maybe we can help someone else in a similar situation.

There's a little girl whose mommy went over to Eastern Europe to rescue her from an orphanage. This little girl was in an orphanage because she has an extra chromosome. Sadly, many children with disabilities are discarded like trash in some of those countries.

Meet Carrington.

When her mom took her away from the orphanage, she unbundled her little girl for the first time. She wasn't allowed to do so in the orphanage. So she took off her winter garb and found that THIS is what her daughter's body looks like.

How does this photo make you feel? I've been haunted by it all weekend. Carrington is three and a half years old. She weighs 11 pounds. Yes, 11. Her body is shutting down. It's a miracle they got her home to the US (where they expedited through customs and went straight to the hospital). This little girl is in a fight for her life right now. It's only by the grace of God that she didn't die before her parents got there. A friend of Carrington's family has started a blog, so if you would like to hear more about her, visit this blog. Carrington has six siblings at home and I know her family could use some prayers. This little girl was not born in a third-world country, friends. She was born in a country that has hospitals, doctors, surgeons, nurses. But she has an extra chromosome. She has Down Syndrome. Her life was not valuable enough for the individuals who were around her to bother trying to save it.

Here is another adoption story for you. Do you remember last year when the woman in Tennessee sent her adopted son BACK to Russia with a note pinned to his shirt? Imagine what happened to adoptions in that region. After shutting adoptions off for about a year, the Davis family was finally given a court date to adopt Kirill.

Look at this adorable boy!

The court date was last Thursday. The judge said "no." Seriously. She said no. The reason? She said that Kirill was "not socially adaptable" due to "his medical condition" (Down Syndrome!) and he was better off in an institution than in a home with a family. Read more here. The family is appealing. But would you believe that if the supreme court decides to side with the appeal, the next judge who will rule is the SAME JUDGE who denied the adoption in the first place. We have a big God. And He can move mountains. So we pray.

What do we do with this information about the children? Are we compelled to action? In Deuteronomy 4:9, God tells us to "watch yourselves closely so that you do not forget the things your eyes have seen or let them fade from your heart as long as you live."

Also,

"Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12

What would you have done?

Two weekends ago we went to my Aunt Jeanne's house for a cookout. We cooked out but ate in. Isabella loves to go and play with Stephanie since she's a "big girl". Poor Stephanie. She's such a good sport! I'd also like to let everyone know some fantastic news. Many of you who read this know that my Uncle Chuck (my Aunt Jeanne's husband) has been under going treatments for bone cancer. He was recently told he is in remission! What a sigh of relief!

At Aunt Jeanne's house, Raymond was having so much fun and that he fell fast asleep.

Daddy is very comfy!

Lily thought a nap sounded like a good idea too.

So I have a question for all of you. What would you have done?

Isabella and I were having a conversation the other day and she asked me why Uncle Bobby, Aunt Lori and Alexander have to live so far away. I told her that Uncle Bobby and Aunt Lori have jobs in West Virginia and that's where Alexander's school is. I also explained that one day when she gets married that she might want or have to move far away with her husband. She stated that she wanted to live with me, Raymond and Lily forever. Then she thought for a second and added that she wants to live with Sadie forever too. Now, we all know dogs (or people for that matter) don't live forever. Would you have said okay and let it go? Or would you have taken the opportunity to explain to her that the dog won't live forever? Isabella is 4. Do you think she's old enough to have that conversation with? Want to know what I did? I decided to tell her that Sadie wouldn't live forever. I sat Isabella down in my lap and told her that dogs (and cats) age much faster then people. Because of that, they "go to heaven" sooner then their families and wait patiently for them. Isabella told me that made her sad and I explained that it was okay to feel sad because we love Sadie very much. I also told her that Sadie is very healthy and that as long as we continue to take really good care of her she will live for a long time. At bedtime, Isabella told Chris what we had talked about earlier in the day. He pretty much reiterated what I had already told her. Chris added that after Sadie would pass away, when we felt ready, we could get another dog to love and take care of. Isabella was happy with that and told Chris that she wants to go to a shelter to get our next dog. Chris told her that he thought that would be a great idea. (FYI - Sadie is from a rescue) So would you have explained that to to your 4 year old? Afterwards I thought maybe it was a little too deep for her. On the other hand, I really like to explain things to Isabella and teach her things in a factual way. She's very smart and absorbs so much information. I feel strongly she's so smart because we do explain things to her in an adult, yet appropriate, manner. I was just curious what everyone else thought.

On a totally different topic, Lily is getting so big!

Aunt Anna came for a visit with Grammy. She's REALLY ready for her little grand-daughter to arrive! Don't worry Aunt Anna, she'll be here anytime now!

Isabella started swim lessons last week. She's really enjoying it. She doesn't like opening her eyes under the water, but, like she tells me, she's getting used to it. Sorry these pictures are so dark. It's hard taking good pictures in the pool area. The parents wait in balcony area and watch. That's were these shots were taken.

This is Emmett. The poor little guy is terrified to get into the water. He doesn't want to have to put his head under water. His dad brings him and does such a good job of encouraging him but no luck so far. Isabella was talking to him and trying to convince him to go into the water. She was unsuccessful but I thought it was very sweet of her to try.

Raymond had a neurology appointment last Friday. He has been having a lot of trouble with his seizures. The doctor put him on an additional seizure medication. It makes him very groggy and out of it. I really hate that he needs to be on two seizure medications but I also don't want him to have seizures. It's the lesser of the two evils I guess. We've been slowly introducing the new medication and by next Saturday he will be on his full dose. We are hoping that creeping into it will help with some of the side effects. He's so sweet and we just worry about the little guy! I know he'll overcome this obstacle too!

Our April schedule is very busy. I'll do my best to post things a little quicker. We've had a lot of company over the past two weeks and I don't like to be on the computer while people are here. So I've been slow at posting. I hope everyone is doing well!

Until Next Time!

Lots of Love,

First Dentist Appointment

On Monday, Isabella and Raymond had a dentist appointment. In the waiting room, there is a terrarium with a bearded lizard. Raymond was extremely interested in it. He kept pointing at it and was trying to show it to me. I didn't tell Daddy how interested he was in the lizard. I'll just wait for him to read this. I'm sure we will be having a discussion about getting one. Some of you may remember that Isabella asked Santa Claus for a lizard. Santa didn't bring one. But now, Santa Claus is out numbered, 3 to 1. Oh boy!

Isabella's teeth looked great. She loves the dentist!

This was Raymond's first dentist appointment. He didn't really like when Dr. Miller had his hands in his mouth but he didn't yell or cry. Dr. Miller said Raymond has a class 3 bite. That means that Raymond's top jaw is smaller than his bottom. He will have an under bite. I told him he's going to look like Winston, Pappy's English Bulldog. : )

Dr. Miller explained that this bite will make it more difficult for Raymond to learn how to eat because everything is essentially backwards. He said that children with this type of bite also have a lot of trouble with ear infections because air goes right into the ear canals through the mouth causing fluid to build up. He also told me that this bite causing the person to be a mouth breather. Raymond already is a mouth breather and children with Down Syndrome tend to have trouble with ear infections. Double whammy for poor Raymond. This bite also causes trouble with the teeth coming in on top. There isn't enough room for all of his adult teeth to come in. Adults tend to have jaw surgery to move the jaw forward. That is a series of very painful surgeries. If Raymond would want that for vanity's sake when he's older, that's his choice. I am not going to put him through that. Dr. Miller said he can remove a few of Raymond's permanent teeth in the back to make room for the other teeth. This is the best option for Raymond in our opinion. Dr. Miller and I also discussed Raymond's sharp teeth. All of Raymond's teeth are malformed on the top causing them to be very sharp. They are not decaying and are all very healthy - just incredibly sharp. This is something we need to address as soon as possible. Raymond has a tendency to bite his tongue. His tongue is often out (because he is a mouth breather) and he accidentally bites it. Dr. Miller and I discussed the danger of Raymond biting the major artery in his tongue. He told me that if that should happen I need to call 911 immediately. The scary thing is, he went on to say, that if Raymond would make it to the hospital, it would be a major operation to repair. Yes, he said, if he makes it to the hospital. So now, Raymond has to have all his teeth ground down so they are smooth on top. This will need to be done under sedation in the hospital. So now every time Raymond falls or bumps his head I'm worried I will see red! And guess what...

Raymond has discovered that he can get up on the furniture by himself. All I have to say about that is YIKES!

Isabella loves playing with her brother and sister!!!

Raymond is so gentle with Lily. Granted, you have to remind him when he's on the way over but I'm still so happy with how he's doing. Yesterday I was nursing Lily while Raymond was on the floor playing and Isabella was sleeping. Raymond bumped his head and was very upset. Luckily Lily was pretty much done eating so I picked Raymond up and held them both at the same time. I looked down and saw Raymond was holding Lily's hand. It was so precious! I wanted to take a picture so bad but I couldn't because I would have had to move one of them to get the camera. If Isabella would have been awake, I would have had her take the picture. She's good with the camera. Anyway, it was just SO SO SO cute. We sat there together like that for a long time.

For those who don't know, Isabella's preschool is in a church. The ladies quilting group was asking for fabric donations. I donated a TON of fabric to them since they could make better use of it then I was. I love to quilt and sew but I don't have a lot of time to do it. I knew these ladies would be very grateful for what I had to offer them. As a thank you, they made us a quilt for the kids. What a nice gesture.

Until Next Time!

Lots of Love,

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,