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Friday, August 29, 2008

Joey's story...

I have decided to start my first Friday Fence Post with Joey's story...it's what ultimately led me to be a blogger today.

Joey was born April 26, 2004. My husband & I already had two sons, John who was 10 at the time, and Tommie, who was 8. We had tried to have another child for 4 unsuccessful years, and had resigned ourselves to having only 2 children. Heck, we would still be spring chickens when they graduated and left home! What would we do with ourselves? Needless to say, we were caught by surprise when we found out I was expecting after all this time. We were very excited and nervous too - it had been a long time since there had been a baby in the house, and by this time the old high chair, swing, playpen(are they even called playpens anymore?), etc. were long gone. Everything now-a-days is battery operated, plays music, vibrates, and lights up. No hand cranked swing for this little one! Anyway, my pregnancy went off without a hitch, although I developed gestational diabetes and had to keep tabs on that. I only had 2 or 3 ultrasounds (and was amazed at the pictures and video you can get now) and there was no indication that anything had gone awry. The baby was growing well and we opted not to find out what we were having. We went to the hospital on Monday, April 26, so I could be induced (I was also induced with the previous kids) and our beautiful son Joseph Edward was born at 4:41p.m. weighing 7lbs. 1oz. Although he was smaller than the other two boys (8lbs.2oz, and 8lbs.9oz. respectively) he appeared to be healthy and doing well. His blood sugar was low, but this is to be expected from babies with moms who have gestational diabetes. So the happy phone calls were made to relatives and friends, my mother-in-law brought the boys out to see their new brother, my sister came to visit, and so began the whirlwind that comes after you have a new baby. I went to bed that night, feeling tired but comfortably happy, with our long awaited new baby snuggled in the nursery. The next morning when I awoke, I was gingerly getting ready to take a shower, when the doctor knocked and came in on his rounds. After asking the standard questions about me, he proceeded to tell me that Joey was doing well, but he had some pediatricians come in and take a peek at him and they think he might have something called Cornelia de Lange Syndrome. Here I am, in the ever fashionable hospital gown, towel in one hand, underwear in the other, and someone was telling me there was something wrong with my baby. Wait, back the truck up. I was floored. "What do you mean, there's something wrong? He was fine, no one said there was anything wrong with him! What is this Cornelia de Lange Syndrome, is it like Downs Syndrome? Is he alright? You think he's (forgive me here) retarded? Is he sick? Is he healthy? Will he be able to walk, talk, go to school? What's wrong with him? What are we supposed to do?" I will admit, yes, I was flipping out. Here we had this seemingly healthy, full term baby, and now someone was telling me there might be something wrong? No way. Not my kid. Not us. Not my family. The doctor went on to say that he has some facial characteristics typical of the syndrome, and that they were going to do ultrasounds and scans, and blood tests, and this and that, and can they have my permission to take his picture to send it to some geneticists? Is there anything he can do for me right now? Let him know when my husband gets here, and he will come in and talk with us. In the meantime, try to relax, and I will put you in touch with the right people. The doctor left, I am still clutching my underwear, and I must call Shawn to tell him to get to the hospital, there may be something wrong with Joey. How do I make a phone call like that? And let me tell you, it's one of the hardest things I ever had to do. Shawn answers, I say get to the hospital, they think there's something the matter with Joey. He says "What?" I say "They think Joey might be (forgive me again) retarded!" He says"What?" and we go on like this for a few minutes. Unbeknown to us, our lives had just taken a dramatic turn towards the path of geneticists, therapists, all kinds of people with titles ending in "ist". When my husband arrived, we clung to each other, tears rolling down our cheeks, he asking questions, me not having any answers. What do we do now? We had no clue. We called the nurse to have Joey brought in. We sat down and waited, trying to comprehend everything that had happened in the last 45 minutes. 45 minutes?!? Is that all it took to turn everything we hoped for, prayed for, dreamed for into a spiraling trip into a life that we had no idea would be like? Enter, the nurse, with our darling son. She must have caught wind of what was going on, because she started in on a spiel about how she'd seen babies diagnosed with something before, only to have it turn out there was nothing wrong. She was sure Joey would be fine. Is she trying to make us feel better? I suppose, in her own way. I wanted to hold Joey. I tried holding him, I really did, but all I could do was cry, and search his face for any signs of this Cornelia de Lange Syndrome, not even knowing what I was looking for. I tried holding him, I really did, but I was too scared I would find some evidence that something was wrong. Soon, I had to give him to my husband, saying I'm sorry, I just can't hold him right now. I felt terrible, what kind of mother has a precious new baby and is too afraid to hold him, afraid of what she might discover? Me, I guess. And so began my trip into denial, which I hate to admit lasted for the better part of Joey's first year of life. The doctor came in after an hour or so of Shawn holding Joey, and me wanting desparately to, but just couldn't at the time. It's hard for me to explain, but I guess I can blame it on the mind numbing fear that was racing through my body. He said they were going to do an ultrasound of Joey's brain (what?) and basically his whole body, to see what they could find. He had already been in contact with some geneticists in Omaha, and normally it takes 3-4 months to get an appointment, but he was able to pull some strings and get us in a week from tomorrow. Do we have any questions? Questions? Of course we have questions. What are we supposed to do now? Is he healthy? Can he see? Can he hear? Is he in pain? What is Cornelia de Lange Syndrome? Will he walk? Will he talk? Is he sick? What does all this mean? Where do we go from here? Joey showed no signs of distress, was good size, but was having some trouble taking a bottle. He showed some facial characteristics of CdLS, and also small hands and feet. He does not have enough characteristics to say that this is definately what he has or doesn't have. He should be able to go home tomorrow. Okay, so we have a baby that someone thinks there is something wrong with, possibly CdLS, but no one can say for sure at this point. So what did we do? The next day, we took him home of course, and tried to absorb everything that was happening. At home, we took care of him, just like we did our other kids. Only this time, when Shawn was at work and the boys were at school, I would wander around the house bawling like a maniac, trying to find some answers to something I didn't want to believe was true. When Joey was 10 days old, we took off for Omaha to have our first encounter with a geneticist. He examined him, telling us he does have some of the signs of CdLS, but not enough to say for sure if this is what it is. He has the general facial qualities, small hands and feet, only one line across the palms of his hands, but doesn't have any of the health problems that are associated with this particular syndrome. And guess what-there is no blood test currently available to recognize CdLS. Great. So what do we do now? We make a follow-up appointment and head home with this precious baby and no one can definately tell us one way or another what is going on. So, like I said, I was in a deep state of denial, but I knew deep in my heart something wasn't quite right. When Joey was about 4-6months old, we noticed that he wasn't doing some of the "typical" things a baby his age should be doing. No rolling over, no wanting to sit up, and basically falling into the good old "failure to thrive" category. When he had a check-up with our family doctor, we discussed this and he gave us a referral to our local children's therapy facility. He began attending when he was around 8 months old. Meanwhile, I will still blame denial as I had not yet bothered to reach out to any early intervention programs or do any research about Cornelia de Lange Syndrome. Oh, and did I mention that through all this, I became pregnant again? We never thought that was in the cards, given how long it took to have Joey. Our beautiful daughter Emmaletha Mae was born March 14, 2005 as healthy as can be, weighing 8lbs. 1 oz. and only 10 1/2 months younger than her big brother. Our other daughter, Abbigail Diane followed along 14 months later, also as healthy as can be, weighing 9lbs.1oz. But these are stories for a different day. When Joey was around a year old, we had an appointment with a specialist to have him evaluated for a cranial helmet, as his head seemed to be a little misshapen. Well, he didn't meet the criteria for the helmet, but this particular doctor had some experience with CdLS, took one look at Joey and declared that he had Cornelia de Lange Syndrome, no doubt about it. And I'm like okay, someone has finally told me that he definately knows this is CdLS. That's all the kick in the rear I needed. I climbed out of my pit of denial, and finally took some action. I contacted all the early intervention services I could find, and one of the most important things I have ever done was to contact the CdLS Foundation. They are an incredible wealth of information and support. Since that day, we have hit CdLS full force and done everything we can to enrich Joey's life. When the denial phase was over and done with, there was a whole new world open to us. The more we learn and share about Joey and the syndrome he has, the better off he is. We try to utilize every resource available and spread awareness about CdLS every chance we get. I do regret not being honest with myself that first year, and not getting the help we needed right away. As much as I would like to, I can't turn back the clock. All we can do is forge ahead, take it a step at a time, and pray for the best. I would like to sign off with these thoughts--- Yesterday, I took Joey to therapy, and his PT took him outside for a little workout. As I was watching them through the window, he played in the play house and enjoyed some sand and water time. And something I will never forget, she had him climbing up the stairs and sliding down the slide. She put him in the swing, and he was actually enjoying it, which is not typical of Joey because swinging is usually one of his least favorite things to do. He was laughing and smiling and playing. It was one of the best days of my life.

Thursday, August 28, 2008

Something new...

Join me on Fridays for a little something I am going to call Friday's FencePost. Basically, I am going to pick a subject and ramble on about it. It could be about anything from asparagus to zoology. I plan on sharing stories about our family, Joey's progress, CdLS, the news or whatever pops into my head and occasionally spit out a little poetry. Visit us on Fridays-- if you dare!

Saturday, August 23, 2008

Free falling...

Don't ask what possessed me to do what I did today...I'm still trying to figure it out myself. I traveled alone with 4 out of our 5 kiddos. I have traveled with them alone before, in various combinations, swearing to never do it again, but somehow forgetting the past experiences and thinking to myself it won't be too bad, we'll have fun! Yea, right! Will I ever learn? Anyway, for those of you who don't know, my mother has multiple sclerosis. She was diagnosed with it about 4 years ago, after battling breast cancer (and winning!) the year before. I've come to realize that M.S. is a terrible disease, comes in different variations, and robs the individual of having control over what they want their body to do. I've also come to realize that my mother is a fighter (which I've known for quite awhile) and she does her darndest to battle against this demon every day. She never gives up, still works at her job 4 days a week, and tries to maintain everything she possibly can. My folks still live in Albion (my old stomping grounds) and today I decided to go for a visit and help my mom out around the house. This was a great idea by itself, until I piped up and asked "Who wants to go with me to see Grandma?" Well, John seizes this opportunity as a chance to drive, Tommie says he'll go because he's bored and oh yeah, he hasn't seen Grandma for awhile, and of course, Emma & Abbie go anywhere I go no matter where it is as they are currently attached to my hip. Shawn of course volunteers to stay home with Joey, saying they will clean the house (they did a magnificant job, by the way). Joey knew something was up, but he was cool with the whole thing because he knew he would have the run of the house and not have to share anything with his sisters. We get all loaded in John's car, I'm still thinking this is okay, and Shawn and Joey are smiling and waving from the porch. We start out driving across town in the opposite direction we have to go, because one of the gas stations is running a penny an ounce fountain pop special. And the boys think this is so awesome, a big 44 ounce pop for 44 cents. Great deal - right? Sure, until you include chips, suckers, hot dogs, and beef jerky. The ride to Albion was not too bad, Abbie fell asleep, and Emma was busy munching Ruffles. The only conflict was which kind of music to listen to, and an occasional SLOW DOWN! coming from my side. We get there, Grandma is happy to see us, we're happy to see her, and the girls begin dragging out everything they can find to play with and the boys start bickering over who gets play my brother's old Nintendo first. All in all, it was a good visit. I helped mom out with a few things she needed done, we got our bellies full, and managed to leave her house undamaged when we left. We give hugs and kisses to Grandma, she thanks us for coming, a big smile on her face as we walk out the door (why does everyone smile when we leave them??). We all pile in the car and of course we have to stop at the Dairiette for malts. This adds on an extra half hour to our travel time but the ice cream is great. The ride home actually turns out to be pretty fun. I manage to hide my nervousness (John has never driven when it is getting dark), Tommie turns the music to some great stuff from the 80's, and we all are slurping on some malts. I never thought that when the day came I had a teenager, that we would enjoy the same music. But John is a kid after my own heart, enjoying Journey, Def Leopard, and REO Speed wagon. Tommie is slowly coming along, liking only a select few. The girls were even singing along with their versions. We made it home in one piece, John did pretty well for his first nighttime driving session, and I got some good bonding time in with the kids. For the record, I am putting this one down as a good day.

Friday, August 15, 2008

4 down, 1 to go...

School has started! And 4 of the 5 Riedmiller kids are off to further their education and torment the teachers. The 5th stays behind with mom and cries because she wants to go to "cool" too. Soon enough she will be joining them. We have John, 15, who started his freshman year yesterday. I have no first day of school picture of him yet, as the last two days he left the house at 5:45a.m. and does not return until 7:15p.m. Football practice in the morning and afternoon, with a full day of school in between. Tommie, 12, entered 7th grade. Yesterday, he was out of bed by 6:15a.m., bright eyed, and fired up to go back to school. Today, not so much. Barely up by the time his ride got here at 7:30, the complaints have already begun. Joey, 4, began his 2nd year of preschool yesterday and Emma, 3, her 1st. They are actually at the same school this year, and in the same class. Which is nice because Emma fills me in on everything. Joey has adjusted well, and no tears from Emma on her first day either. So far she loves school which makes taking her a lot easier. All in all, getting all the school supplies, figuring out what they wanted to wear, and who needs to be here or there by what time, is the hectic nightmare I knew it would be. Hopefully in a few days, the kids will be adjusted to the school schedule, and I will be too.

P.S. I want to include something I wrote and sent to school with Joey. His teacher sent it home with his classmates. I paper clipped a CdLS brochure to each one too.

Hi! My name is Joey. I am one of your new classmates in Ms. Smith's class. I am 4 years old just like you, but you might have noticed I am different in some ways too. I was born with Cornelia de Lange Syndrome. I am not sick, I am just taking a little longer to grow and learn some of the things that you already know how to do. I don't know how to walk yet, but I go to a fun place called Wiggles and Giggles and a nice lady called a physical therapist is helping me to learn how to walk. I like to laugh and play with toys and go outside like you do, but I have to crawl to get where I am going. Watch out because I am pretty fast! I don't know how to talk much yet either, but another nice lady called a speech therapist is helping me learn words too. So don't be upset if you talk to me and I don't answer you back, I am still learning how to say things. Sometimes you might see me in a blue chair when I come to school. Don't be afraid, it's just something I can ride in to help me get around better. If you have any questions about me, please ask Ms. Smith and she will help you find out what you want to know about me. I am happy to be your classmate. I know we will have lots of fun together in school!

Tuesday, August 12, 2008

Boycott Tropic Thunder

I must admit, I don't usually pay much attention to the happenings in the entertainment industry. I mean, c'mon, there are only so many Paris Hilton, Britney Spears, & Lindsay Lohen stories I can take. All kinds of people have drug problems, get thrown in jail, and lose custody of their children every day. So rarely do I get too upset about anything that is going on in the Hollywood scene. My movie experiences in the last few years are limited to such flicks as Alvin & the Chipmunks and Happy Feet. But I have to tell you, the information I have read about a new movie coming out really has my blood boiling. This movie is called Tropic Thunder, starring Ben Stiller. From my understanding, the whole point of the movie is to poke fun at physically & mentally disabled individuals. This does not fly with me. As the mother of a disabled child, I am outraged. Apparently Dreamworks/Paramount Pictures have already taken a bunch of flack about this movie but were unwilling to change anything about it. Oh, wait, they have stopped releasing some of the available souveniers for sale. Wow, what a step forward for the mentally challenged. Some of the t-shirts that are available sport phrases from the movie, with the "R" word on them plain as day. If someone decides to wear one of these disgusting shirts, they had better hope they don't meet me on the street. So on behalf of Joey and other adults and children that struggle with physical and mental challenges every day of their lives, please do not see this movie. My last comment is addressed to Mr. Stiller, Dreamworks, Paramount Pictures and anyone else affiliated with this movie: Obviously, none of you have had your lives touched by a person with special needs. I feel sorry for you because you have missed out on a lot. Come on over and call my son names and make fun of him to his face. That would be freakin' hilarious.

The R Word Campaign

Sunday, August 10, 2008

CdLS Blog challenge...National Lazy Day

Today is National Lazy Day and our blog challenge is to show some ways we are being lazy today. Although it is difficult to be lazy in a house with 5 kids, we did our best. We attended a local parade this afternoon, so I guess our "lazy day" involved hot weather, sunshine, balloons, & some great quality family time. Here's a peek...

"waiting for the parade, it's really hot out here lazy"

Emma & Abbie's version of "crazy lazy"

Joey showing us "balloon lazy"

This is "silly lazy"

"watching the parade lazy"

Friday, August 8, 2008

the twelve gifts I wish for you...

happiness - deep down within.
serenity with each sunrise.
success in each facet of your life.
family beside you.
close and caring friends.
health - inside you.
love that never ends.
special memories of all the yesterdays.
a bright today with much to be thankful for.
a path that leads to beautiful tomorrows.
dreams that do their best to come true.
appreciation of all the wonderful things about you.

Monday, August 4, 2008

Cooper turns 1!

On Sunday, my handsome nephew Cooper turned 1! My sister and her husband threw a great party for him at Godfather's Pizza. Tons of great food, loads of guests, and lots of the cutest Backyardigan decorations you've ever seen. I cannot believe Cooper is 1 year old already. We had a great time at the party and all the kids had a blast. That is the highlight of our weekend - other than that, we spent some time at home trying to get some things done. There is some stuff Shawn wanted to get done outside around the house, but it was way too HOT!! Enjoy the pics!

Cooper's 1st Birthday Party

Friday, August 1, 2008

Joey, 9 specialists, & 1 small room...

We made our annual trip on Wednesday to the Children's Developmental Clinic at Children's Hospital in Omaha. This is a clinic where Joey goes and various specialists come in and see him, check his progress, and make their recommendations. This was our third visit, and it went pretty well, as well as can be expected when you try to put Joey in the same room for about 5 hours and have a bunch of people bugging him. It is a great program, and it's nice to have some input from all the different specialists. The orthopedist was first up, and Joey was not to happy to see him (too early) so he wouldn't walk or anything for him. We discussed his feet issues ( they have a tendency to point in when he walks sometimes) and his opinion is to see how he is doing in a year, but most likely will need surgery to correct this problem (not what I want to hear right off the bat). He also thought his braces are too short, so will have to look into that. Nice way to start the morning - right? The OT was next up, and Joey was still not in too great of a mood. She was pleased with his progress, wants him to work on teeth brushing, feeding skills, etc.(she says this every time). He has come a long way with his sensory issues and she was very happy with that. The PT came in next. Joey was in a better mood, so I did get him to show off and walk up and down the hall with his walker. She was very happy to see this, although she is concerned that he is crouching a little when he walks. She also thinks his braces are too short, and could use some different shoes that might help correct his feet issues. She likes the sounds of everything that is being done for him and will make her recommendations. The ST was happy to know he is learning how to use the Picture Exchange Communication System (PECS). We also saw the geneticist, and we are going to follow-up on a tiny spot he has on his backside with some type of ultrasound or MRI. With a spot like this, it sometimes means spinal or renal problems I guess. There aren't any obvious signs of anything, but we will have it checked out so we don't have to wonder about it. That's pretty much it in a nutshell. Throw in the pediatrician, a dietician, a social worker, and a pharmicist and it made for an interesting few hours. We will see what we get accomplished...

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