Saturday, October 31, 2009

Happy Halloween 2009

From Tristin, my goth girl:

From Camille, our gypsy:

From Elijah, a super ninja:

From Tristin, Camille, Elijah, Noah and Eric:

The twins don't really care either way to get dressed up. Actually they would rather not and just sit in the car and watch videos..LOL They did pretty good this year in school playing dress up, so perhaps next year we'll think of a twin costume.

31 for 21 Day 31.. 21 Things about Down Syndrome

Well as the 31 for 21 Challenge comes to an end I wanted to share 21 different things about life with Down Syndrome that pertain to my life.

1. Down Syndrome is NOT something to say your sorry about to new parents. Remember that at the beginning the child is just an infant that will require the same needs as any other child, if there are not other medical needs.
2. Down Syndrome is also called Trisomy 21 because the 21st chromosome has 3 cells.
3. Down Syndrome used to be considered a curse to many, and today I truly believe its a blessing.
4. Down Syndrome can be scary. Anything that is new and uncertain is scary.
5. People with Down Syndrome are not "always happy". My guys get frustrated, goofy, sad, adventurous, and misbehave just like my typical children do.
6. If you ask my children what they think about having twin brothers with Down Syndrome, they will tell you they think they are pretty cool. They don't see the disability, they just see their brothers.
7. Quote from my daughter Tristin "how are they different?"
8. Quote from my daughter Camille "they are hard workers and always have something to do"
9. Therapies do not have to be a bad thing. Not only do they benefit your child but you too.
10. I have become a Down Syndrome stalker. I love looking at new babies or children and interacting with adults with Down Syndrome. They are beautiful people.
11. Your life will be forever changed for the better, and that's probably not what you would have thought in the beginning.
12. If your pregnant with a child with Down Syndrome and considering an abortion, please remember there is a waiting list for infants with Down Syndrome in the United States. They are valued people and in demand.
13. Down Syndrome is pronounced just like that..NOT Down's Syndrome.
14. Here's a tip to PLEASE remember: People First Language please. People with Down syndrome are people 1st. Instead of “a Down syndrome child,” or "the Downs twins" please say “a child/individual with Down syndrome.” Down syndrome does not define my's just a part of who they are as a whole.
15. Finding support is a major thing to understand your rights and regulations as a parent of a special needs child. Be sure to find support either locally or online.
16. Identical twins with Down Syndrome is VERY rare, and if your reading this blog and know of someone please put them in touch with me.
17. The Arc is a great organization to help support you. Each state has on and many many counties have one. Here is mine: The Arc of Jefferson County
18. People with Down Syndrome are not always classified as Mentally Retarded. Just like typical people, there are different degrees of learning ability.
19. Some days I wonder if its really that they have to many genes or we don't have enough. What would the world be like if we all loved and lived as people with Down Syndrome do?
20. Its encouraging to me to know that some people with Down Syndrome drive cars, hold great jobs, they get married and have families, they attend college, and much much more.
21. I thank God each and every day for choosing me to be the mommy of two amazing boys both with Down Syndrome. What did I do in my life to have deserved such a blessing :)

Thank you for following along this month as I tried to bring some awareness to my readers about Down Syndrome. If you ever have a question, a comment, or need more information about Down Syndrome, please feel free to contact me. I'm always up for good conversation about a topic so near and dear to my heart.

Friday, October 30, 2009

31 for 21 Day 30.... Goals

Having children with Down Syndrome has created a whole new vocabulary for me. Words like IFSP, Transitions, Goals, IEP's, Interventions, Therapies, Developmental Delays, Non-verbal, Sign Language, Sensory Integration Dysfunction, GERD, Asthma, Tracheaomalasia, Subglottic Stenosis, Thickened Liquids due to Aspiration, Cookie Swallows, Stimulation... oh I could get carried away and just keep on typing words that pop into my head that have been new words for us over the past four years.

I want to focus today on Goals. Now four years into this whole parenting a child with a disability I am just now realizing how important it is to set goals. I know the service providers have been doing this since the boys were infants, but I think I am just getting the importance of it all. Without goals we wouldn't have something to word towards. We would just get lost in the shuffle of everyday life and may or may not learn a new ability. I know, I know this took longer for me to grasp than most.

It was something that is happening in my life right now that made me realize the importance of setting goals and ultimately made me appreciate even more what my boys have gotten up until this point and how much more I will stress goals in the future with them. My UH HUH moment was when I set a weight loss goal for myself this month. What I had to do to reach that goal was not just do the same ole same ole everyday, I had to change things, tweek this and tweek that, go beyond what I would normally do each day with meals and fitness.

I set the goal to lose 10 lbs this month. I have been recording my calories, I started walking 2.5 miles a day and when that no longer seemed a challenge for me I began a Couch to 5K program and I am actually JOGGING now. I have never jogged in my life for fun that is :) I stayed focused, I kept my goal in front of me and I accepted the challenge to change. It has paid off and I lost 12 pounds this month. I am so excited and ready to dive into the next month and see where that brings me.

I think that the goals I have set for my boys have been good to this point, but I think they're ready for more. I think we need to challenge them more and help them become even more independent than they've already become. I look forward to setting more goals for my life and for my children's lives. I think I may even take this to a new level, setting goals for my marriage, for my Christian walk, for my house keeping... WOW!! I better get a big piece of paper and lots of gold stars to stick up when I reach a goal.

Who woulda thunk it!

Thursday, October 29, 2009

31 for 21 Day 29.... We're Broke...Literally!!

So I haven't gotten to the blog in a few days. Imagine, me, busy? Hump, who woulda thought...LOL I'm not even going to use the busy excuse, nope not this time. How about my laptop kicked the bucket, or shall I say got its bucket kicked.

One of my children, their name will remain anonymous, accidentally dropped my laptop the other night and broke the screen.


This is all the shows up on my screen, don't adjust your computer or your eyes, this is what it looks like. I was honestly furious about this. The children have been told they are NOT to use my laptop they have one of their own. All be it the dinosaur that it is, but its still ok for them to play games and get online with. My computer has all my information on it for the Arc, for my church bulletins I print out weekly, thousands of photos, our finances, and much much more. I guess you don't realize how important this incredibly time consuming machine is in your life until your about to lose it. I have even been recording my fitness and nutrition on a great site that I've used on and off for about two years now on SparkPeople and I was getting freaked out that I couldn't track my calories for the day...

Thank goodness, I put a plea out on Facebook and a few ladies knew that I could plug my laptop into a desktop monitor and use it that way for now, until I can get a new screen. THANK YOU!! THANK YOU!!! THANK YOU!!!!

Then today at preschool Isaac took a terrible tumble and he looks a little broke now too!! They said he was sitting on a chair, fell off that onto the sand/water table and must have hit it just right that his eye bumped into a bolt sticking out a little bit. Thank God he had his eye shut, but its gonna be a black eye for sure.
Poor Bugger, guess he can go Trick or Treating as a Boxer now....LOL

Monday, October 26, 2009

31 for 21 Day 26,,, God Opens Doors

I'm asking for help so read all of this please...

About a year or so ago, I was searching high and low for some kind of support group in my area to attend for parents with children with Down Syndrome. I live in a small rural area and I had no such luck.

I have gotten so much WONDERFUL support online and so much advice and encouragement from people that I most likely will never ever meet. But I was still looking for physical bodies to talk with and share our families ups and downs and spend time with doing things with our kids together, and found nothing.

I read so many stories online of other people's experiences with support groups and I decided that I was going to figure out a way to get a local support group going in my town. I know there are not alot of children with Down Syndrome that I know and with the whole HIPPA rules I was having a hard time finding any other people in this area who might be interested in joining my future group. I still continued on and read up on organizing and planning events, how to fund raise, how to advertise, how to start with little or NO money, and much much more. One of the last things I had on my TO DO LIST was to contact our local Arc Branch. If your not familiar with the Arc its an organization that provides services and advocacy for children and adults with Intellectual Disabilities all throughout the United States. You can read about The Arc of the US here, and The Arc of PA here, and my local branch, The Arc of Jefferson County here.

When I contacted the Arc they said that what I was planning on doing was something they would like to get going in this area as well, they just couldn't find anyone to do it. I was asked to consider coming in and doing this with The Arc. Without understanding exactly what they did or who they were I declined because I didn't know anything about other disabilities, and I didn't really want to learn everything about them all either. It was all I could do to understand Down Syndrome. After some thought and prayer I realized that the challenges, the activities, the opportunities, or the lack of each of these things mentioned would be the same for all individuals and families dealing with a disability. I felt that God was opening a door for me that would provide me with the ability to get a support group off the ground much faster as I would have a facility to host the meeting, funding since they are a 501c non-profit group, they have an established client list already, and I have an "in" to finding and reaching out to other families who have a child or adult with disabilities. I took the position of Executive Director back in May of this year and haven't looked back since.

GREAT!! This was going to be a cinch. I would get a big group together, we'd have speakers, we'd have parties, we'd have informational discussions, we'd find an advocate to discuss IEP's, we'd do this and do that. The group would not only be for parents of children with Down Syndrome, but for anyone struggling with anything dealing with special needs. Sounds simple.

But now 5 months in, we truly don't have the participation that I expected. We have about four of us that have committed ourselves to this and attend monthly. I can't figure it out, seriously. Am I the only person who feels the need for a group like this?? Am I the only person who will make time for something like this?? Am I the only person who doesn't feel inconvenienced to find a babysitter for something like this?? Am I the only person who wants something in place for new parents as well as seasoned parents to come together and share our experiences? I don't understand.

I'm reaching out again to my "Cyber Support Group". How often do your groups meet? Do you bring your children with you? Siblings? Spouses? What type of activities do you do? Any advice would greatly be appreciated. I am not giving up by any means and I know it takes a year to get things like this established, but like I said already have so many things on my side and such potential to get the ball rolling, I'm just at a point that I don't know what else to do right now but to start physically dragging the parents to the meetings. Maybe a bribe?? LOL


Sunday, October 25, 2009

Cute Pumpkin Cake using two bundt cakes

We had a baby shower for my sister in law today. She had her baby a month ago and our church wanted to have a shower for her, so today was the big day. Since she had the baby already we did a Meet Our Lil Pumpkin theme. It was so cute and the decorations and stuff turned out better than I thought it could.

I made the cake. It was actually pretty easy and it turned out really cute.


Its made from two bundt cakes put together and an ice cream cone in the center for the stem. I used a chocolate cake on the bottom and a carrot cake on the top. It was YUMMY!

Saturday, October 24, 2009

31 for 21 Day 24.... First Bowling Trip

Today was my nephew Daniels Birthday. Happy Birthday Buddy!! He held his birthday party at a bowling alley and I was very anxious to see how the twins would respond to all the people and noise at a place like this. They did WONDERFUL!!!

At first Caleb buried his face in my shoulder and refused to look at anyone or even eat pizza for awhile. After about 30 to 45 minutes he knew we were staying there if he wanted us to or not, so he decided to join the party. Once he was up and around he really started enjoying watching the people bowl and the reactions they gave after a ball was thrown. He was still pretty withdrawn and to himself, but we did get him to bowl about three times. It was so great to see this. They just turned four and doing something like this with them was something I don't think I really thought about even trying. But hey, birthday party = FREE bowling, and that's the kind of price I like to try something out :)

Here is a video of Caleb sitting and watching everyone. The light from Tom's phone bothered him a bit so he makes funny squinting faces, but its pretty darned cute:

Isaac on the other hand. As soon as we got to the bowling alley he was completely engaged in everything. The bowling alley was using a blacklight and they colors were very vibrant and he was loving that, he was so very interested in what the people were doing and he watched the ball from the time the people released it until it hit the pins. While we ate he sat backwards in his chair just to watch the bowlers. He was very happy when I asked him if he wanted to try and bowl with a ball. He ran as fast as his little feet would carry him, it was so cute. In this video the noise level must have been a little higher, this is the only time he acted like this the whole 2 1/2 hours we were there, but again, its CUTE!
(Oh and I dropped a piece of pizza on my lap while I was feeding the boys, its always me coming out messy and not them...hump!)

I thought this was a great experience and I'm so happy the day turned out as it did. My nephew had a nice turn out for his party, he seemed to have a great time, we had a great time and we made a memory today!!!

Praying for Polly

One thing about having online support is finding wonderful people and falling in love with so many families from all over the world and following their blogs and their lifes ups and downs. I'm calling out for prayer for a little one, Polly, who was just diagnosed with MoyaMoya and will require brain surgery. MoyaMoya constricts blood flow in the brain. They discovered this when Polly had a series of seizures paired with a stroke and paralysis of one leg.

Polly's family had three beautiful girls and very recently added another beautiful girl from the Ukraine to their family through adoption. They are just now adjusting to becoming a family of six and now will be facing some medical issues with Polly. If you could find it in your heart to pray for this family I would really appreciate it.

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Friday, October 23, 2009

31 for 21 Day 23.... Stubborn

Today all 5 of the children did not have school due to a teacher in-service day. The weather was rainy and chilly, the kids were all pretty hyper so I still sent them outside to play... rain and all. The twins still had their TSS come today to do drills with them and work with them for a few hours. After most of their work was done we all headed out to the Amish Bent N Dent store and bought a ton of groceries that's sure to last us two or three weeks. When we first got a TSS we were not allowed to leave the house. We were only allowed to use their services in the home environment as that is what the boys were familiar with. Now, we are allowed to use the TSS's out in the community since the boys are older and we need to help adapt them to social setting in the outside world. Its is TRULY nice to take them to the grocery store with me, especially on days like today.

I had my own cart which I intended on filling up from the get go, I knew there would be no room for a squirmy boy. So each worker got a cart and one boy to push through the isles and talk about how to act in a store. OH BOY!! They just weren't fast enough today. I was in one aisle and I hear a BOOM..then a CRASH...then another BOOM. It was hard for me not to chuckle. I knew it was my boys before I even began to investigate. If you take your eyes off of them even for a minute they like to scoop items off the shelf and toss them. So they both got a pretty lengthy discussion on why they should not do that and they can get in trouble for this or they could break something (which thankfully today they did not). They both seemed to be processing what was being told them and I turned to continue my shopping. Not even 15 seconds later I heard another BANG... and then the TSS came over and told me they would be taking the boys out to the van while I finished up my shopping. I did laugh a bit then. When they want to do something, or don't want to do something, NOTHING stops them. They are stubborn. VERY STUBBORN!! And I think this is the great fighting spirit that I love about them. I've often thought that it was this stubbornness that got them through the tough start they had in the NICU as a 2 pound and 3 pound premature baby.

So many people label people with Down Syndrome as "Oh they're such Happy People". They are happy people, but they are also sad, mad, fearful, grumpy, hurt, shy, outgoing, confused, overjoyed, intelligent, moody, self-conscience, and stubborn.

I got off the idea I started to blog about so let me get back. So the kids had the day off school we did some running, weather was bad outside but we made the best of it. We all took our turn on the Gazelle exercising, we all cooked dinner together, we all sat and watched Twilight after dinner and folded laundry and just had a great night. I went in to sit with Tom for a bit to unwind and get ready to write something in my blog tonight and in comes the kids laughing and screaming with joy at what they had done. I asked them to all put their pile of clothing away and they decided to dress up our dogs instead. It was quite funny and I thought I would share my kids' humor.

Auggie Doggie "our girl"

And Rosco "our boy"

And this was Caleb trying to tell us what he thought about all the craziness

I am thankful for crazy days like this and I'm thankful for stubborn, silly children.

Thursday, October 22, 2009

31 for 21 Day 22.. BUBBLE!!

I didn't get around to blogging yesterday, BUT we had some very exciting news!!! Caleb and Isaac attend a preschool called Stepping Stones that is set up for children on the autism spectrum. They go two days a week and its a great structured class that has a different theme each week and the teacher REALLY gets into her themes :)

I walked through the threshold of the doorway yesterday and I was greeted with a very excited "WE HAVE SOME GOOD NEWS FOR YOU!!!" They were playing with bubbles and it was time to put them away. The TSS began screwing on the cap to the bubbles and saying all done with the bubbles. Isaac came over to him and pulled his shirt and said "BUBBLE" plain as day. They had to take a double take to make sure it was in fact Isaac and it was. The teacher and the TSS both heard it and they said it was unmistakably the word BUBBLE. They said they both teared up and couldn't wait for me to get there.

So you know I've gotten out the bubbles and tried to get the word out myself with no success. BUT, I know that he has been making different noises. No words yet, but the way he hums and babbles has been changing. I'm so anxious to hear a word out of his cute little mouth.

When they didn't walk until the age of three, I was always wondering if they would walk. And now they run! Now I've been doubting any talking. I try not to. I know that on their own time they will do what they're going to do but its hard to be patient as a mom, especially having three typical children prior to the twins and knowing that they are really delayed in their speech.

I have HOPE! We are going to push harder and see if we can get more sounds without to much frustration from them. But... I have HOPE!! I have that spark of excitement back that they may say MaMa someday. When that happens nothing or no one will be able to burst my bubble for months :)

Tuesday, October 20, 2009

31 for 21 Day 20... God chose me because I'm strong??

I was reading a conversation today on Facebook talking about how the abortion rate is astronomically high for those finding out while pregnant that they are carrying a child with Down Syndrome. The rate now is about 90% of pregnancies are terminated when they find out that are carrying a child with Trisomy 21. I'm not going to get into a big debate on abortion here so just keep reading.

One point I want to make is that the initial diagnosis via bloodwork or ultrasounds is not enough in my opinion to determine if the child has DS or not. Let me explain. I was carrying TWO children with Down Syndrome TWO!!! Blood work came back normally and I had several ultrasounds done, including three or four Level II's. Especially during the Level II ultrasound the perinatiologist spent 15 to 20 minutes trying to measure Baby B's pinky and to make sure it was not crooked. He verbally said out-loud, NOPE no markers for Down Syndrome in these children. Not that it mattered to me either way, but it was said and I was given a false outcome. So if TWO children can come back showing all signs normal How many false reports say that the child your carrying does have Down Syndrome, and they DON'T?? My advice to anyone given the "this child might have Down Syndrome" report, should consider an amnio before terminating the pregnancy, if that's what they choose to do.

Second point I want to make is that people ALWAYS tell me that God chose Tom and I because we're such good parents and we're strong enough to handle something like this. Although I don't mind the encouraging words state that we're good parents. I DO NOT FEEL ANY STRONGER THAN ANY OF YOU!!! This was the interesting comment I found on facebook today:

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength.
Raising a child with Down syndrome doesn't TAKE a special kind of family, it MAKES a special kind of family!


Monday, October 19, 2009

31 for 21 Day 19... Therapies

There are many things I never experienced before having identical twins both with a diagnosis of Down Syndrome. But the one I'm going to blog about today is therapies.

When the twins came home they began Early Intervention therapy at about four months of age. The first type of therapy they began was Physical Therapy. At four months of age the therapist came into our home and did little leg exercises with the boys. As they got stronger they worked on holding their head up, then rolling and sitting, then getting up on hands and knees and then into standing positions. This was alot of work for the boys and one thing that this made me realize is that we totally take our typical healthy children for granted at how naturally things just come to them. To explain this, its just a natural progression for children to lift their head, then learn to roll, then get up on their hands and knees..rock back and forth and then start crawling and so on. With my boys they literally had to be taught how to do each one of these steps. Its amazing how hard my guys worked to get where they are today.

Then Occupational Therapy started. They stared with play therapy. They would learn to push buttons on toys to make the lights and music go off. Then they would pull things, put rings on a post. Now that one was one that literally took us months to master. I'm pretty sure it took both boys about three months to be able to put four rings on a post. It was quite a challenge for them. Now we put shapes into a shape sorter, we're starting to work on pre-writing skills. They also put weighted vests on them for sensory input and this helps them focus on getting their work done. Here are a few recent photos from outpatient OT.

Isaac on the swing:
Building a tower:
Now stacking the squares back together:

After OT came Speech Therapy. The major surprise with this therapy was that the therapist(s) are not trained in sign language. All they do with the boys is try to get them to vocalize and make sounds. After trying this for three years now, I would think they would offer another suggestion. Now some of them do know basic sign and they incorporate this into the therapy session, but I'm still amazed that signing is not "part of their job". The twins truly enjoy speech therapy. Its alot of puzzles, reading books, signing songs, and playing with balls and cars trying to get them to make any noise we can.

Here is speech therapy putting puzzles together:
Here is TSS signing them a story:

Then the boys both had a VitalStim therapy for about a year. This was an electrical stimulation to their neck area to help strengthen their swallowing.

Notice the electrodes on their neck and the little gray machine behind Isaac, that was the volume controller. They would turn the intensity up if the boys would tolerate it. They were to eat and/or drink during this 45 minute session each week.

Now they also have TSS services due to their Autism diagnosis and I have to say that by far these girls are the best thing that's happened to me and my boys. They basically take each therapy that the boys are given and replicate it all week long. Each boy has 18 hours a week with their TSS and they behave better for them than they do me...LOL


Now that the boys are three they attend a preschool provided by the school district to prepare them for kindergarten AND they attend another preschool for children with Autism called Stepping Stones. So between the two preschools they have a four day week of schooling and TSS's at home three days a week.

So the boys are very stimulated and very intensely educated. I am very happy with where they are right now and it amazes me to see their wheels a turnin and thinking about what they've been asked to think about and doing what they've been asked to do. I am so proud of them. I am so happy with our journey so far with them and anxious to see where this journey takes us. God is so good and I am so honored to have been blessed with these boys.


Sunday, October 18, 2009

31 for 21 Day 18... The boys are FOUR

Today at church the boys got lots and lots of birthday wishes. Many comments on how grown up they look with their hair cut, many comments on how they can't believe its been three years already, many comments on how far they've come, and then more comments on how they can't believe they are three already... LOL

I think that this is something that I really have to come to grips with too. I still call them the babies. And I do this DAILY! They aren't babies anymore. And where did the age of three go?? Its like they went from 2 to 4 way to fast. I know that this is a personal struggle for me, treating them like they're younger than they are. Now YES I'm very aware that they are delayed and they still need me more than a typical four year old but I often wonder if I were to be a little more tough in what I did or did not do for them, would they do it for themselves? Now I don't mean that if I didn't spoon feed them their meals for a day and they were starving I wouldn't feed them to see how long it would take for them to be self feeding.

Self Feeding. This is an issue for us right now. Isaac is self feeding himself cereal, but thats it. He won't self feed anything else but a bowl of cereal. But at least he's doing that. We put a bowl of ice cream, yogurt, rice, anything else, he'll sit there and stare at it or throw it?? Caleb is still hand over hand to even get him to bring a spoon to his mouth. Am I babying them by caving in and feeding them?? How do I just say OK BOYS, your four now, time to feed yourself. I'm struggling with this.

Potty Training. Every parent gets anxious and excited to get their child potty trained and parents of multiples get even more excited. I am dreading it. I just don't know if they are ready, but how will I know if we don't at least give it a running chance? What is a good age to try? When did you all start training your child with Down Syndrome?

Drinking out of a straw.. That's something else we just have not been able to accomplish. We're working on it but not there yet.

Blowing.. I was hoping that they would be able to blow out their candles when they turned four but we are no where near that yet.

Throwing Stuff Oh my gosh do the boys throw stuff. Non stop. They want a drink, they chase me around the house signing milk milk milk. I get it for them they take two swigs and THROW the cup!! They pull anything off the counter they can reach and throw it, they want you to change the TV station so they bring you the remote and after you change it to what they want.. They THROW it. They come into our bedroom and throw Tom's alarm clock everyday?? If you put food on their high chair that they don't want they throw it. This gets frustrating for sure.

I guess this turned into a ranting blog entry. I guess I'm just trying to come to grips of needing to treat them like toddlers instead of babies now that they've reached the age of FOUR. But its the things mentioned above that I struggle with that perhaps keep me from treating them like big boys. I think we're in the terrible two's!!!

Any suggestions and comments welcomed :)

Saturday, October 17, 2009

31 for 21 Day 17... Happy Birthday Boys!!!

Today is Caleb and Isaac's 4th Birthday. Where did the time go? I am still just so amazed that we have had 4 wonderful years with the boys already. Our journey with them has been rough at times and completely amazing and fun the rest of the times. We have some obstacles we face with them. A diagnosis of PDD-NOS Autism for one, being completely non-verbal another, and still some drinking issues that we have to thicken their liquids for.

Thanks to their TSS workers, the services we receive for their Autism are exceptional and very worth while. I have so many people tell me they could never have someone in their home as much as we do on a weekly basis. At one time in our lives, when the boys were sick and receiving early intervention and receiving TSS services we had someone in our home 60 hours per week!!! Yes that was a bit extreme, but its what we needed at the time and I can only look at it now and realize we've come so far and life is good.

Being non-verbal has its ups and downs. The biggest downer is I haven't heard them say Mom yet. We DO have communication, they sign. It's such a wonderful tool and I would recommend it to anyone and everyone with children. Not only children with Down Syndrome but even those children without. Teaching your child sign language does not keep them from talking, but it does keep some frustration levels down while they are learning to talk. We still have hope that the boys will talk one day. What is the up of being non-verbal? They aren't talking all the time..LOL My guys do alot of humming, they make some noises when they are playing and stuff but they are not complaining and bickering like my other three children are all the time.

I am so proud of all my kids. Tristin, Camille and Elijah are wonderful siblings to the twins. Life with brothers with Down Syndrome is just normal for them and they don't look at it as if their brothers are any different than anyone else's brothers.

Another thing that people always comment on is the fact that I get both boys smiling in photos all the time, when they may only have one child and can't even get the one child to smile for the camera. To that I say...see how many photos I have to take for one good one???

Friday, October 16, 2009

31 for 21 Day 16... Before and After Haircuts

So cutting a kids hair with sensory issues IS NOT a fun thing, let alone two of them. Thankfully I have someone who will come to the house while the TSS staff is here to help. We have found that putting them in their high chairs in front of the TV watching their favorite program or listening to music is the best way so far we've found to do the job.

Caleb Before:

Isaac During:

Making up with Issac by offering him a cracker:
But as you can see, he's still distraught

Caleb After:

Today after a walk with mom at the mall and a yummy lunch:

Thursday, October 15, 2009

31 for 21 Day 15.... Reeces Rainbow

Of course I have a huge heart for children with Down Syndrome. Of course I have a houseful with five children, and Of Course if I could get my hands on some money I would so love to bring another child into our family through adoption.

Grab a drink, click the link below and take the next 12 minutes and 34 seconds and watch this video they put together. It will touch your heart.

View this montage created at One True Media
Reece's Rainbow

Wednesday, October 14, 2009

31 for 21 Day 14... Down Syndrome Features

One thing that I have come to love more than anything are the features of people with Down Syndrome. I found this photo on the left when I googled Down Syndrome Features. I know that some may find that statement odd, but I absolutely love looking at people with Down Syndrome and admiring their beauty. The almond eyes, the smaller facial features, their beautiful smiles, their attractive personalities.... I could go on and on.

To clear up any misconception some may have, There is no degree of Down Syndrome. My boys do not have mild Down Syndrome because they have mild features. I hear that often, Oh they must not have it really bad because they don't look like they have Down Syndrome alot. Having Trisomy 21 does not determine your personality, your IQ, your future, your life choices. I know many people who's children are not qualifying for services because their children do not need it. I know many parents who have their child potty trained at two. I know many parents who's child was talking at 12 to 16 months of age just like the typical children are.


How could you not love these features??

Here is an Oldie but Goodie. See if you can find the boys in this video:

Tuesday, October 13, 2009

31 for 21: Day 13 Is that because of their Down Syndrome?

OOPS, I missed my first day. Not bad considering I've suffered with a terrible flu or cold or whatever it was for the past 7 days, and still have terrible congestion and coughing going on. Enough Excuses.

So yesterday we went to Pittsburgh for a Pulmonology appointment. We go for a visit every 6 months. The twins have been diagnosed with asthma and we usually have long rough winters dealing with colds, bronchitis, pneumonia, and lots of breathing treatments. Because of this we always start taking Singular and Flovent from October to April every year to help steer us away from breathing issues. On our way there Caleb started acting a little fussy and I was hoping he was not getting what I'm recovering from. The Doc listened to him and sure enough, he's wheezing..UGH so not only do we get to start Singular and Flovent, now we're giving albuterol treatments this week. Let's hope its just a cold and nothing else.

One thing I should have done over the past four years I wished I would have done, just to know kinda thing is record doctors visits in a log book. I know we have made more visits to Pittsburgh in the past four years that I have in my entire life. (And thats even with me going to college in Pittsburgh and coming home often) We have had more than our share of visits to Childrens Hospital. Is that because of Down Syndrome? not entirely.

That is one question people ask me all the time. Is that because of their Down Syndrome? The asthma, banging their heads with their fists all the time, swinging and chewing on socks, their picky appetites, I don't know I've lost count of what all that's been asked about. The answer is more often than not NO. Every kid with Down Syndrome is not the same as any other. The only thing that every kid with Down Syndrome has is an extra 21st chromosome. Just like other kids who have asthma don't have it just because they are typical kids. Its not a question that offends me, just kinda makes me laugh that people pair having Down Syndrome together with all the bad stuff.

My kids with Down Syndrome are more like my typical children than they are given credit for. It may take them a little longer to get to that point, but they get there. They get frustrated, they pull hair, they take toys away from each other, they laugh, they hug, they love to kiss, they have very defining personalities, they give me more joy than I could have possibly thought I was capable of at one time in my life.

Sunday, October 11, 2009

31 for 21 Day 11... Family

I just got word that my brother in law Jim just finished the Chicago Marathon. I am so excited for him and proud of his journey to get there. He injured his foot about three weeks ago and it was up in the air even just this week if he was going to be able to run the 26.2 miles or not. So this was an even bigger accomplishment for him to not only run that distance but to do it while in pain.

This brings me to the subject of FAMILY.

When I received the diagnosis for Caleb that he had Down Syndrome I was alone in the NICU with my sister in law Megan. She was one of the best people I could have wished to have been with when the news was delivered to me. She is often a girl of few words, but she gets her point across. She said It's no Big Deal, you can do this. And to her, I believe its truly no big deal. She has a cousin who is like a sister to her and who has a Developmental Disability of some sort. Her cousin is, I think 19, such a fun person to be around and yet still needs the scolding a four year old would need for doing something they know they shouldn't have done, she can be quite mischievous at times. Megan knows what her aunt has gone through, what the family has gone through, how her cousin has affected many peoples lives for the better. And therefore I trusted that it was No Big Deal.

I called my husband and he met me at home and I told him about the diagnosis. We cried briefly, more out of fear. Fear of the unknown, fear of how our lives were going to change, fear of what others would say, fear for our children, fear of the future. In response to the fear we dove right into research and some of that scared the tar out of us even more, but most of it did actually settled our minds a bit. That this was indeed No Big Deal.

I have to say that at first breaking the news to family was heart wrenching. Each member took the news a little different than the other. We had some family members who began crying instantly, we had some family members who said they were so sorry, we had some family members say we were good parents and we could handle anything God gave us, we had family members make us feel like this was going to be a terrible burden on us and what were we going to do... Yea, a very broad range of emotions we had to deal with along with the fact that we still had two very tiny babies in the NICU who were still needing alot of medical attention to keep them alive.

Aside from breaking the news of the diagnosis, my family was absolutely amazing. I was in the hospital for several days before the boys emergency c-section, and then stayed in a week after they were born, and then a very long 84 day NICU stay for Isaac in Pittsburgh. During all of this, Tom and I closed on a new home. My family cared for the three older children and they all pulled together and scheduled who would have the children when, who would be feeding them, getting them off to school, etc..etc..etc.. AND my mom and sisters pulled together and painted and wallpapered almost the entire house for me while the boys were in the NICU so that there would be no paint fumes to deal with when they're wee little bodies came home finally. AND my church family provided us with meals AND my Mothers of Multiples group provided us with meals AND the prayers we received were so comforting.

One of the best things about a Down Syndrome Diagnosis? Family. It pulled us together more than we could have thought. It made us realize what is important. It helped us appreciate that just being here for each other means more than a high IQ or a big pay check. It means that God does give us things at just the right moment for just the right reasons. And I know that there are many people who would not want to deal with what we do, but not having been put into the position as we were almost 4 years ago I may have thought and said the same thing. But today.. Today I thank God for his DOUBLE BLESSING on my family. We have all grown from these boys. I love my family.

What would you say is one of the Best things about a Down Syndrome Diagnosis??

Saturday, October 10, 2009

31 for 21: Day Ten....A Funny

So I have been down all week with what I believe is the flu. It started on Tuesday and by Friday I could take it no longer and called the doctor to get an antibiotic. So today I'm still not feeling well and I decided to go use the twin's nebulizer and albuterol to help break up some the the chest congestion I've been enduring for the past four days. And then, the Funniest thing happened!!

I took the nebulizer into my bedroom. We live in a ranch home, my bedroom is at one end and the living room is in the middle section but kinda far away from my bedroom. I fill up the vile with the solution and get ready to sit back for a few minutes of quite time and inhale this solution into my lungs to get some relief. I turn on the machine AND I hear pitter patter pitter patter, little feet RUNNING in the direction of my bedroom. I'm confused and not sure what's going on??? Then both twins swing the door open, jump up on my bed and attack me to take away the nebulizer. I laughed so hard at them, they were so excited to hear that machine turn on and to take a few puffs of that mist. I honestly think they missed it. Every winter, they have terrible congestion. Many children with Down Syndrome have terrible congestion all winter long and my guys are part of that. Unfortunately for the boys they both have been diagnosed with asthma as well. We usually spend a lot of time with the nebulizer between the two of them, so much in fact that we have two machines here at the house. It has been quite some time since we've used one and I was seriously so amazed at their reaction. I would have thought that they would have ran the opposite direction, but NO this was a familiar sound to them and one that I think they realize brings them relief.

I am hoping this winter will be different from the rest and that we won't be needing this wonderful machine all that much, but from the reaction I got from Caleb and Isaac today I think they would miss it, not being able to wave the wand around and stick the wand into their mouth and blow out a puff of smoke. I can only hope that if we have to use this on them this winter I will get the same kind of excited reaction when its for real :)

31 for 21: Day Nine people with Down Syndrome have "tremendous capabilities."

Karen Gaffney DID IT!!! Read all about this VERY Inspirational story

A long, cold swim for a cause - Local News Updates - The Boston Globe

Posted using ShareThis

Thursday, October 8, 2009

31 for 21: Day Eight ... Go Karen Go!!!!

Karen Gaffney will swim eight miles in Boston Harbor on October 8th.

Karen Gaffney is the President of a non-profit organization dedicated to championing the journey to full inclusion in families, schools, the workplace and the community for people with developmental disabilities. She is doing this by creating awareness and calling attention to the tremendous capabilities of people with disabilities. Karen accomplishes this through presentations and workshops delivered all over the country. Karen graduated from St. Mary’s Academy in Portland, Oregon and earned a two-year Associates of Science degree from Portland Community College. She successfully swam the English Channel as part of a six-person relay team. And just last year, she accomplished her biggest swimming Challenge yet… she swam 9-miles across Lake Tahoe in 59-degree water to raise money for the National Down Syndrome Congress and to show the world that people with Down Syndrome are more alike, rather than different, from everyone else. Karen travels the country speaking to a wide range of audiences about overcoming limitations and about what can be accomplished with positive expectations. Karen tackles any challenge she faces with determination and commitment, knowing she has limits, but not allowing them to limit her drive to succeed. Oh, and by the way…. Karen Gaffney has Down syndrome.

MDSC Mission Statement: To enhance on a continuous basis the lives of individuals with Down syndrome through the education and support of people with Down syndrome, their families, their friends, their teachers, and the community as a whole. To ensure individuals are valued, included, and live fulfilling lives in the community.

Our Vision: The MDSC wants to be recognized by parents, educators, people with Down syndrome, and the medical community as the preeminent organization in Massachusetts for information, networking, and advocacy for and about Down syndrome.

To visit their site Click Here

Wednesday, October 7, 2009

31 for 21: Day Seven

Last year Parenting and BabyTalk did a photo search for children with Down Syndrome to feature on their website the month of October. The response was amazing and the beauty of these children just melts your heart. Take a moment a look through a few of these and pay special attention to Round 8... That's my guys on the front :)

Tuesday, October 6, 2009

We're more alike than Different...

31 for 21: Day Six

When I received the diagnosis of BOTH boys have Down Syndrome I was doubly concerned that I wouldn't know what to do with them. How they would turn out. How I would need to care for them differently. How different life would be with them.

I am so happy that nothing is different. We have bouts of sickness that lasts a little longer than most children, we've had some medical ups and downs, we've thrown the words therapy, transition, sign language, and non-verbal into our vocabulary. But to us, this just feels normal. Any other baby you have, there's adjustments period. As the mama you just adjust your daily life around the needs of your child, and that is true with the boys as well. This all feels VERY NORMAL to us.

I realize that some reading this may still not know exactly what Down Syndrome is, they just know that my boys are so darned cute they want to learn more about them...and thats ok :) I found this online and think it explains things very well.

Down syndrome

Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from each parent. In most cases of Down syndrome, however, a child gets an extra chromosome for a total of 47 chromosomes. It’s this extra genetic material that causes the physical and cognitive delays associated with Down syndrome.

The cause is unknown, although it isn’t caused by environmental factors or anything the mother does before or during her pregnancy.

It occurs in one of every 800 births. Maternal age is the only factor that has been linked to an increased chance of having a baby with Down syndrome. A 35-year-old woman has a one in 350 chance of conceiving a child with Down syndrome. By age 45, the incidence has increased to one in 30. However, because younger women have higher fertility rates, 80 percent of babies with Down syndrome are born to women under the age of 35.

Kids with Down syndrome tend to share certain physical features such as a flat facial profile, an upward slant to the eyes, small ears, a single crease across the center of the palms, and an enlarged tongue.

Low muscle tone and loose joints are also characteristic of children with Down syndrome.

Half of all children born with Down syndrome also have congenital heart defects and are prone to developing pulmonary hypertension (high blood pressure in the lungs). Approximately half of all kids with Down syndrome also have problems with hearing and vision. Other medical conditions that may occur more frequently in children with Down syndrome include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection and a higher risk of childhood leukemia. Diagnostic tests for pregnant women are about 99 percent accurate in detecting Down syndrome and other chromosomal abnormalities.

Source: Kidshealth

The MAJOR thing I disagree with in this article is the statement at the end that says Diagnostic testing is 99% accurate. FALSE!! FALSE!! FALSE!! I was carrying two children with Down Syndrome, I had the testing just to be prepared, bloodwork, Level II sonograms (3 of them) and nothing came back out of the ordinary. As a matter of fact, it was said aloud more than once, that there was NO signs of Down Syndrome in my children. So its a very bitter fact for me to read that so many women are getting abortions these days on just a TEST. The only accurate way to tell during pregnancy is an amnio and even so, these children are true blessings from God and I hope that I would be able to touch one person's heart who may think otherwise.

Monday, October 5, 2009

31 for 21: Day Five... Support

I never realized how hard it is to find support for something until I needed it. Down Syndrome is a scary enough diagnosis to be given, but then feeling like your going through it all alone is even scarier. When the twins were born, I didn't know anything about Down Syndrome, or premature babies, or Necronizing Entercolitis, or colostomy care, etc....

It took several months (about four or five) before I even found someone local to me who had a child with Down Syndrome. And that happened to be twin girls, one with Down Syndrome and one without. It was so nice to relate to this mother and find we had alot in common.

I have to say that the best support I got then, and still yet today is from my online friends. I have met so many people online that have become like my second family. I have met a few of them in person and that is really exciting to see the person in the flesh after seeing lots and lots of photos first. I find it comforting that if I'm having an issue or problem with something I can go and post on my favorite site DownSyn and I'll have an answer almost immediately. And now that I've jumped on the Facebook wagon, there too I enjoy keeping up with friends I've met online who have children with Down Syndrome. Last August I was sooo thrilled after searching and searching to find an online forum for parents with multiple children with Down Syndrome. I have found a few families who have identical twins both with Down Syndrome from that site. We are so rare that is so nice to find others.

I enjoy speaking to my online friends, but I was still wanting to get something going locally. I read books, planned out when to meet, what to call our group, and I started to try and find other families interested. One of the last things on my "To Do List" was to contact our local Arc organization. I called and spoke to Rachael, she was thrilled that I was trying to start something in the area and said I should consider working with them. I didn't know what the Arc was exactly and I knew they dealt with all types of special needs and I was just looking to stay in the Down Syndrome family. After alot of prayer I realized that God had opened the most amazing door for me and I accepted the offer to come on board with The Arc of Jefferson County. I have been their Executive Director now since June of this year. I have been blessed to be able to use their wonderful facilities which include an 8 acre camp with playground, pavilion and 12 picnic tables, fenced in pond, classrooms, complete kitchen and dining hall and much more. This has been such a blessing and yet I am still having a hard time getting families to come to the support group meetings??? I don't understand it to be honest. I am hoping that word of mouth gets around and more people will come.

I am so blessed with the support I've gotten this far, and I hope that I can support others in the future. Any suggestions or comments on how you have gotten your support groups to grow??

Sunday, October 4, 2009

31 for 21: Day Four

Today is Sunday and a good day to talk about the love and support I received from my church family when we got the twins' diagnosis.

I have told everyone time and time again just how much they're prayers kept us going when we were dealing with the NICU, the Down Syndrome diagnosis, surgeries for Isaac, being away from one baby while spending time with the other in a different hospital miles and miles away from each other, and not to mention being away from the older three children as much as we were. Without the comfort of prayer, cards, hugs and help with getting our house in order and keeping our kids I don't know how we would have gotten through this ordeal. Without my family AND my church family it would have been impossible.

While we were going through all of this I prayed and cried and prayed some more, but I don't feel as though I had the strength to pray for the right things. But I knew that my church family and friends were taking care of lifting us up in prayer and I truly felt that comfort.

If your going through a new diagnosis of Down Syndrome or any other difficult time for that matter and you do not have a church family, from experience, find a church family to help get you through. We attend the DuBois Church of Christ. We've tried many many different church and never felt as welcomed as we do here. When we travel we always visit a Church of Christ in the area we're visiting and we have always been more than welcomed at each stop.

I now pray for all new parents receiving the diagnosis of Down Syndrome and for peace and comfort for them as they process the overflow of information they will get at the beginning. God Bless them all as he has our family :)

Saturday, October 3, 2009

31 for 21: Day Three

After receiving the diagnosis of Down Syndrome for both of my twins, our spirits were high but a fear of the unknown was difficult. Not only did we have a new diagnosis to become familiar with, we also had the NICU to deal with. This was our first experience with a NICU baby. Having had three 7+ pound healthy babies prior to the twins, seeing a 2 and 3 pound babies with wires everywhere and machines helping them breath at first was quite a different experience.

My sister Heidi was the first person to provide me with encouragement. She was an RN for one and for two she had worked in a group home in the past and had experience with individuals with Down Syndrome. I honestly did not know anyone with Down Syndrome that I could compare what we were about to deal with to.

My sister provided me with a paper that had a poem on it that totally put a smile on my face and made me feel as though maybe, just maybe these children are a blessing from God, it was called The Creed of Babies with Down Syndrome.

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Friday, October 2, 2009

31 for 21: Day Two "The Diagnosis"

I'm going to start my Down Syndrome Awareness blog by telling how we got the diagnosis and how I feel it should have been handled differently.

When any parent has a child they are so very excited about everything. We always hope for a healthy baby, for a safe delivery, and to live happily ever after. When I found out I was pregnant with twins, the excitement was doubled. I was so surprised, I NEVER thought I would have twins. That was just one of those things you see other people do or watch on a Baby Story and feel for those parents...LOL After the initial shock Tom and I were very excited.

I had a long complicated pregnancy. I had several ultrasounds done, including three Level 2 sonograms to make sure everything was ok with the babies. In one instance the perinatologist spent 10 to 15 minutes just trying to measure baby B's pinky and make sure it was straight. Boys looked good. Hearts were healthy, all organs looked great except baby B had one kidney dilated but that was nothing to worry about it should fix itself before he was even born. After finally getting the pinky measurement the words "There's no indication of Down Syndrome in either boy, they're healthy". Great!! One Less worry, now let's just get through this pregnancy.

My due date was December 15th. On October 13th a very good friend of my family died. My mom was going to keep the news from me in fear that it would upset me to badly, but I found out and I was really sad all night long. Woke up October 14th to a trickle going down my leg..uh oh. Off to hospital to see what it is. Ended up not being amniotic fluid but I was having contractions very steadily so they kept me. The next day doctors attempted to get them to stop and did not succeed, the next day they put me on magnesium sulfate....UGH, but it worked. October 17th, I was feeling well, contractions have just about stopped completely I was ready to go home. I ordered my lunch and was sitting with my sister and niece in my room and we were talking about me going home. It was a good day!

THEN, the Charge Nurse came running into my room as the lunch lady was delivering my lunch to me and told me not to take a single bite of that food!!! WHAT?? The sonogram that I had just had that morning showed that Baby B was in distress and they got poor readings for everything they were checking for so I was off to an emergency c-section.

Terrible c-secton, won't go into details, but they put me to sleep.

Fast forward 10 days. I was in the NICU with the boys sitting with my sister in law Megan. We were chatting about how tiny and cute they twins were. Caleb (Baby A) was 3lbs 3oz and Isaac (Baby B) was 2lbs 10oz, both were 15 1/2 inches long. The pediatrician came over to our pod and said he had the test results back on Caleb. Test Results? WHAT TEST RESULTS? "I'm sorry to inform you that your child has Down Syndrome." "At this time we cannot tell you how he may function in life or what other conditions he may have. We have several brochures for you to read and I'll have the nurses put something together for you. Do you have any questions for me?"

UM, no!! Can't you see the shock on my face, let me get a few breaths of air into my body so my brain can even function. Ok..Ok So Caleb has Down Syndrome. Does Isaac? "Well we don't know that yet. Because Isaac is so small the test requires so much blood we've decided to wait until the results of the placenta come back to determine if they are identical or fraternal. If they are identical they will both have it but we've never seen a case like that before so more than likely Isaac does not have it."

To back up the story and explain. When I had to have the emergency c-section it was due to Baby B, Isaac, not reading well on the sonogram. When he was born he had severe head trauma from being shoved up into my ribs. He literally had a heart shaped head coming out with the imprint of my ribs going from the top back of his head down to his chin. Due to this they did not suspect any Down Syndrome in the delivery room, just head trauma. Caleb however, they noticed some features of Down Syndrome and asked my husband if they could run some tests on him. At the time I was still heavily sedated and didn't hear any of the conversation. My darling husband, who was only trying to protect me, decided not to tell me this information because I had been through hell that week and then a terrible delivery. I do seriously thank him for that as I would have just worried for that first 10 days instead of enjoying them.

When we received the official word that Caleb had Down Syndrome we were not upset so much with the Down Syndrome, we were just nervous that we would not know how to do this and hoping that we could be the kind of parents that he would need to tend to his special needs. Neither Tom nor I had any experience or knowledge about Down Syndrome and it was scary. While we waited on the diagnosis for Isaac we kept discussing, what if's. What if they both have it? What if one does and one does not? Which way would we prefer it? How much did God think we could handle? How long did we have to wait? It was driving us crazy quite frankly.

Oct. 31st. Closed on our house...YUP!! We were buying a house and wanted to get it ready for our twins arrival in December and instead the twins came first and then the house right after they arrived. We went Trick Or Treating with older three kids and enjoyed our day bragging to everyone about our sweet little babies in the NICU.

November 1st. Twins seemed a little different today? Not eating well and having alot episodes of them not breathing? I went home knowing they were in the best care just to see the other children and have dinner with my family. I pumped and went in for my evening visit to deliver milk at 10pm and was met by a dear friend, Tina, who happened to be our NICU nurse. She said Isaac was having some trouble and they had called the life flight to ship him to Pittsburgh Children's....

November 2nd. Isaac and Caleb had both developed N.E.C. Because Isaac was the smaller of the twins he could not fight off the infection in his small bowels and had to have an operation. During this operation they drew blood to test for Down Syndrome and as they broke the news to us about his condition, they also said they were pretty sure he had Down Syndrome.

This was ALOT to take in, but we grew stronger in our faith in God, our love for our family and friends for their help and prayers, and we learned more than anything that we have no control in this life and to feel blessed for every day we're given.

Note to Doctors and Nurses:
I just wished that how we were given the news would have been done with more respect to us as parents, for the road we were about to travel, more respect for my children who may have a more difficult road but darnit they were both beautiful infant boys who needed the same attention and love as my other children did at the beginning, and more respect for the disability in general. Its not a bad thing that you have to be Sorry about. Instead Congratulate the new parents, tell them that you know several others who have done great things with their children and there are so many opportunities out there now that weren't here 20 years ago, Give HOPE instead of SORROW when you give a diagnosis. I can tell you from experience, I have been Doubly BLESSED and I would not want this any other way even if I could choose it myself now.

Thursday, October 1, 2009

Happy Birthday Heidi!!!

Sisters Friend Jody and Heidi

Today is my sisters Birthday. I am so very proud of her. She is currently a single mom, working full time as an ER Nurse, going to school full time to become a Nurse Practitioner, and suffering with a herniated disk in her back. She is working so hard at life and she is doing a wonderful job. She is working on her thesis project and her topic of study Nutritional needs and Fitness of preschool children with Down Syndrome. I was so honored that she chose that topic as it will benefit me and many others to come.

We lost our dad four and a half years ago and although we miss him dearly, it has brought us closer that we ever have been before. So Thank you Daddy :)

This morning before the Camille and Elijah went to school I told them that today was Aunt Heidi's birthday and they wanted to sing Happy Birthday to her. I took a photo of them and then voice recorded them signing and texted it to my sister. I would have loved to have shared that on here because there's nothing cuter than kids singing, but my inability to understand technology kept me from doing so...LOL

So Heidi if you can figure out how to get that online, email it to me and I'll post it :) Have a wonderful day, don't eat to much cake, and have a scoop of ice cream for me!!! P.S. Biggest Loser competition starts tomorrow, you in?

31 for 21 here I come :)

This is a great month for us. The twins turn 4!!!! We will celebrate the past four years with them and continue to Thank God Above for all the blessings they have brought to us. I love fall, the beauty of the trees, the cooler weather, halloween with the kids, football season, and the opportunity to snuggle up with a good book (reading Twilight series, finally). Not only does October bring us all of that already mentioned but it also brings Uncle Jimmy running the Chicago marathon on Sunday October 6th, The Buddy Walk thats going on all over the country, the twin's participated in the 2010 calander to benefit the Pittsburgh Down Syndrome Asso. again and they will go on sale this month for $16, and this month is a National Down Syndrome Awareness month. Someone has created a challenge to bloggers to spread the word about Down Syndrome and I'm going to try and take the challenge.

Its known as the 3rd Annual 31 for 21 Blog Challenge.

I will be trying to talk each day about something I've learned about Down Syndrome, how Down Syndrome has changed our lives, what I wished I'd known about Down Syndrome before the boys came, and things I want you all to know about Down Syndrome. Please feel free to email me questions you would like me to address this month at I would love to cater this to who ever is curious about things. Don't be bashful, I want to make this fun!!