RAISING JOEY

I hope everyone has a fun & safe 4th of July! We’re having a cookout today so I’m off to clean and cook food!

So, one of Joey’s nurses told me, “I love babies with Down syndrome. They look like elves.” I was so tired at the time she said it, I didn’t say anything. It didn’t register what she said until last night.

Am I the only one who finds that insulting??? Comparing my child to a fictional story character for some reason insults me.

We made it home a little bit ago. Like Steph said, the doctor did end up taking both his tonsils and adnoids, and like I figured, his ear canals were still too small for tubes but he drained the fluid off his ears.

Yesterday evening was a little rough, I fed him some jello and less than 1 hour later, he started vomiting. And of course, I got covered! Thank goodness I took one mom’s advice and packed extra shirts for myself, lol! He ended up vomiting 2 times and then went to sleep. He slept until his nurse had to wake him for more medication and to take his vitals.

He’s still not wanting to drink much, but I’m able to get him to eat jello, so hopefully he’ll start to drink soon…

I’m beyond tired at the moment and since I just put Joey down for his nap, I’m going to take advantage of Leah still being over at my in-law’s house and eat my lunch and take a nap myself!

Hi!  This is Jessica’s sister-in-law Stephanie and I have an update about Joey’s surgery this morning.  His surgery went well, however they did end up having to remove both the adenoids and tonsils.  Joey was in a lot of pain so they re-sedated him and he and Patrick are taking a nap right now.  Hopefully he’ll feel better when he wakes up!

As for his ears, again his ear canals were too small so they were unable to put the tubes in.  They did end up draining a bit of fluid off of his ear drums.

Thanks for checking in, and I’ll update again if I hear any more news.

The hospital called and we have to be there at 6:15am… AM people! I am so not a morning person, wish me luck, lol!

But on the serious side, please say a prayer for Joey tommorow to get through this safely and without complications. I will do my best to post an update if I can get an internet connection. If not, I’ll try to get my sister in law to post for me.

Sunday morning after church, we even had the preist bless Joey for his surgery! I want all the extra prayers we can get!

 Thank you in advance for your prayers!!!

Since Joey will be in the hospital for 23 hours starting tomorrow morning, any suggestions on things to pack to bring along for him (and me) to help make our stay easier??

I’m bringing my laptop and Elmo & Signing Time DVDs for him to watch. What else do I need to take????

I’m already so nervous about this surgery even though it’s just his adnoids & possibly tonsils out and tubes in his ears. My stomach is in knots!!!!

“My Son Has Down Syndrome, One Mom’s Story”

Real Family: Raising a Child with Down Syndrome
By Christine M. Porretta

Mark Radel, of West Winfield, New York, was born with Down syndrome. “We were scared,” says his mom, Mary. “We didn’t know what he would be able to do.” Today, Mark amazes his parents with his accomplishments: “He is within the milestone range for a normal child,” Mary says. Here, she gives us an intimate view of their lives.

Q. What helps Mark get through some of the day-to-day struggles?
A. One of the hopeful things about having a child with a disability in this day and age is that there are so many services. From the time Mark was born, he was getting physical therapy, speech therapy, and occupational therapy, and he’s in a swim class. All that extra stimulation helps children with Down syndrome perform pretty close to where other children perform.

Q. Now that Mark has turned 2, what are a few of his likes and dislikes?
A. Whenever his big brother, Luke, walks into a room, Mark gets very excited and starts laughing and clapping. Social interaction is his favorite thing — especially with his brother. Mark’s a toddler now and moves around so much because he doesn’t like to be confined. He also doesn’t like me or my husband, Patrick, to tell him no — all the normal things that toddlers dislike. He really does like to eat his vegetables, though, which is unusual!

Q. How do your sons relate to one another?
A. When we brought Mark home from the hospital, Luke was not quite 2. The first thing Luke did when he saw us was point to Mark and say “baby.” Then he reached over and gave Mark a big kiss and a hug. From that point on, they’ve been wonderful together. Luke always wants to help with Mark’s therapies. He encourages him — he says, “Go, Mark” and “Come on, Mark” and claps for him. There’s nothing nicer than when my husband and I see Luke put his arm around Mark and say, “You’re my best friend, Mark. I love you.”

Q. How is raising Mark different from bringing up Luke?
A. There are different struggles and worries that my husband and I have with Mark than we had with Luke. But there are also different rewards and joys. With Mark, we have to work so hard for him to do certain things that when he actually accomplishes a goal, we’re just so excited. When he crawled, it was like the president came to visit us, and when he took his first steps, we cried. And it’s not that we didn’t notice and weren’t happy with those things when Luke did them. We just didn’t realize how much it took — how many things had to go right for that to happen.

Q. What has Mark taught you and your husband about being a family?
A. Mark’s having Down syndrome has forced us to focus on the fundamentals — what’s really important in life — and that’s often all the small things. I think that people tend to get caught up in thinking that their children are extensions of themselves. Having a child with Down syndrome or any disability helps you focus on maximizing whatever his abilities are going to be.

Q. Do you recommend that other parents in similar situations seek help?
A. I do. I used to think that if you went to a support group, it meant you couldn’t handle things yourself. But after going to one, I realized I was completely wrong. It’s always good to be with people who are sharing like experiences — they’ve been there and done it and can give you some instruction on how to do it and what to look out for.

Q. Is there any misinformation about kids with Down syndrome that you want to clear up?
A. When we first found out that Mark had Down syndrome, I read online that children with it don’t walk until age 3, and that’s just not true. Because of a lack of research money, up-to-date information is hard to come by. What you read may be outdated and not apply to what your child will accomplish with the services that are now available. Plus, every child is unique, and you cannot paint a whole group of kids with the same brush just because they all have Down syndrome.

Q. What would you like to tell moms-to-be who are having a baby with Down syndrome?
A. It’s a whole new world, but it’s not the end of the world. Love the baby, get to know the child, and don’t worry about his or her diagnosis. There’s a 30-year-old woman with Down syndrome in our support group, and she has a driver’s license and a college degree. When you’re speaking with her, you have to remind yourself that she has a disability. That’s such an inspiration for my husband and me, because we dream that Mark will be that way one day.

Copyright © 2008 Meredith Corporation. Used with permission from the July 2008 issue of American Baby magazine.

After reading all of your responses on here and on the message boards I posted the same question on I decided to call Joey’s ENT to see if they could keep him over night.  I explained all of my concerns and they also thought it was best to keep him for observation and to help keep him hydrated.

He will be staying 23 hours and if need be longer.

Joey is going in on Tuesday to have his adnoids and possibly his tonsils removed and tubes put in his ears. The ENT only wants to take his tonsils if he absolutely has to since the recovery is worse with tonsils and adnoids than just taking his adnoids.

He said adnoid recovery is heaven and tonsil is hell.

Joey has been sick with nasty snot issues for over 2 months now…

My question is, when your kids had their T&A were they kept overnight at the hospital? Or were they sent home that day

Don’t forget about our Buddies Helping Iowa Flood Victims! Amy from The Flege Farm lives outside Des Moines, Iowa and knows many people who were affected by the Iowa River flooding. Their local ARC’s office has been destroyed, the local library, and even a friend’s medical office who also has a child with Down syndrome.

There are several ways you can help!

The first is, I’m running an eShow on my online Usborne Store. You can purchase books from it and have them sent to Amy and she will distribute them to people who could use them. If you are interested, please email me raisingjoey{at}gmail.com

The second is throgh Michelle over at Big Blueberry Eyes. She’s doing the same type of thing but with her Discovery Toys Store. Spring Into Summer Sale as well as Summer Sunsations Sale. If you would like to donate to this cause you can donate through her paypal (even $1.00 will help) and on June 25th she’ll take all donations and place an order sending it to Amy to distribute. If you’d like to place an order yourself you’ll need to email Michelle for Amy’s address of where to send the order to.  The toys will also be shipped directly to Amy. Also Any commission she make as a result of placing this order to Amy, she will also send to Amy so she can purchase toiletries and other much-needed items.

The third is after talking to Amy, many families are in need of clothes and other items. If you are interested in shipping any extra items you may have, you can contact me at RaisingJoey{at}gmail.com.  

If you have an online store and would like to add your business to this wonderful cause, please let me know and I will add you to this.

• Raising Joey’s Usborne Books eShow
• Big Blueberry Eye Discovery Toys Store

For more Wordless Wednesdays, visit here.

I forgot to post pictures of last week’s playgroup I took the kids to! I’ve started a monthly DS playgroup and each month gets to be more and more fun!!!

Loved and cherished, she thrives

By Beverly Beckham, The Boston Globe 

June 22, 2008

I strap her into her car seat and tell her that we are going to the doctor. And she smiles at me and says, “Mimi’s house.”

“First we’re going to the doctor, Lucy, then you can come to my house, OK?” And then we sing, in big, booming voices, “Police officers, firefighters, a doctor or a nurse. They help me if I’m hurt. They help me if I’m hurt!” over and over until we arrive at Norwood Hospital.

Lucy, my granddaughter, is almost 5, but she was only 3 days old when we came here for the first time - the entire family, her mother and father, aunts and uncles, her grandfather and I. “She has three holes in her heart,” Dr. Geggel told us. It’s not unusual for children with Down syndrome to have holes in their heart, he explained. Sometimes the holes close on their own. Sometimes we have to operate. It sounds worse than it is. Don’t worry. We do these operations all the time, he told us. Calm and kind and quietly caring, he was then and continues to be.

We came here regularly, to this satellite of Children’s Hospital, to have Lucy tested. She was so tiny then, the smallest of babies, poked and made to lie still, constantly being assessed and evaluated.

No one could get her blood pressure, the littlest cuff too big for her arm. But even if a cuff had fit, the pressure wouldn’t have registered because it was that weak, because her heart was that compromised.

I took her to a healing priest when she was 4 weeks old and he held her up like a trophy and announced that he had cured her and a church full of people clapped. But he was wrong. Lucy had surgery at Boston’s Children’s Hospital a month later and there were complications. And when we got her back, she still wasn’t cured.

When she was 4 months old she had to have more surgery to fix what went wrong. Now, every June, just before her birthday, we come to Norwood to have her tested. Read the rest of this entry »

This weekend was our local Irish Festival. My in-laws are Irish and Patrick’s younger sisters competed in the step-dancing competition otherwise known as the Feis. Here are some pictures of the festivities.

Margaret, Patrick, myself & Maureen

Future step dancer!

The St. Patrick’s Day dance

Joey’s first petting zoo!

And guess who wasn’t scared?!

And Joey’s 1st pony ride!!!

And guess who didn’t freak out on the pony?!

Dancing with my best little buddy!

Another future step dancer!

And for your viewing pleasure, a small video of Margaret & Maureen’s dancing and a surprise dancer at the end!

Photo and video editing at www.OneTrueMedia.com

I’m making my first attempt at growing my own herbs. I’m growing parsley, oregano, and basil.

In your own experiences what’s the best way to store it? Refridgerated, frozen or dried? How do you do it?

I want to keep some fresh for now but also want to stock up for this fall & winter. I would love to hear about all your experiences. Thanks!!!

New Testing of Fetuses for Down’s Could Pose Ethical Dilemmas

Saturday, June 21, 2008, FoxNews

A test that can detect Down’s syndrome from the blood of pregnant women, which would be the first reliable noninvasive prenatal test for the chromosomal disorder, has raised the prospect of routine screening for the condition for every expectant mother who wants it.

The experimental procedure, developed in Hong Kong, has been shown to diagnose 90 percent of Down’s syndrome cases in a small trial, while also correctly identifying 97 percent of fetuses that do not have the condition.

If its accuracy can be improved and it is validated in larger patient trials, which scientists believe should take three to five years, it would transform prenatal testing for Down’s.

At present this is provided only for women at high risk of having a Down’s baby because the current procedure is invasive and can cause a miscarriage. It requires amniocentesis or chorionic villus sampling (CVS), which involve inserting a needle into the womb to remove amniotic fluid surrounding the fetus, or a small piece of the placenta.

Miscarriages could be prevented by the noninvasive prenatal diagnosis (NIPD) test, which could eventually be part of standard antenatal screening.

The advance, however, will also create ethical dilemmas for many couples following positive tests. There are fears that the simpler procedure and more extensive screening could lead to more abortions.

Those who then choose an abortion would be able to have it earlier, while those who do not would have more time to prepare themselves for bringing up a child with learning disabilities.

Click here for more from the Times of London.

When you have one of those old fashioned pushmowers rather than a gas powered lawn mower! Patrick’s aunt gave us one since we still have yet to buy a lawnmower and I used it today for the first time and WOW! Did that thing give me a workout!! Who needs to go to the gym when you have one of those things!

Truthfully, I don’t think I’m going to buy a gas powered one now, I’m going to save the money and use that one!

It worked out everything including my abs!!

Thankfully everything is good! No major problems with his heart. The cardiologist couldn’t find any major reason that is causing his murmur and as for the blue fingers and toes, the doc said that it’s poor circulation.

We started out the appointment getting an EKG done, the second the tech tried putting the sticky things on Joey’s chest, he started screaming. So, I had to sing the entire time during the EKG.

Then we were off to the echocardiogram. NOT FUN! The second I put Joey on the table, he started screaming and thrashing his arms and legs. I was so grateful my father in law went with me because it took the both of us almost literally laying on Joey to hold him down, lol! After about 10 minutes of attempting to even get the echocardiogram done.

It was also Joey’s naptime so that added to his crankyness, he actually ended falling asleep so the tech was able to get the echocardiogram done while he was asleep.

He said the one time that his lips turned blue was probably caused by him being cold.

So, we just have to come back in a year for a checkup and if nothings changed or gotten better, we might not have to go back!

Today is Joey’s first appointment with a cardiologist. I’m sure everything is ok, but since he has Down syndrome and a heart murmur his heart needs to be checked out. Kiddos with DS have a high rate of having heart defects. When I was pregnant with Joey, I had a fetal echocardiogram done and nothing major was seen then but we need to be safe rather than sorry.

And since Joe-Joe’s fingers and toes have been occasionally turning blue, his ticker needs to be checked out.

So he has an echocardiogram done then we meet with the cardiologist, who apparently is awesome. Anyone have experience with Dr. Fahey??

I’m so grateful my father in law took off of work today to help me with Joey. It’s not going to be fun holding him down for this echo. Say a prayer Joey corporates and everything goes smoothly!

So at noon off to Yale we go…