Showing posts with label Down Syndrome. Show all posts
Showing posts with label Down Syndrome. Show all posts

Saturday, October 31, 2009

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 children..it'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. pookeymom@msn.com
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, August 7, 2009

Ties that Bind, Connections in the Down Syndrome Community

I have used the internet for more that 12 years now. I used it before my first daughter was born, probably more after my second daughter came along, and then probably alot less after my son Elijah came around. Three children kept me busy enough I didn't get on but a few times a week if that.

THEN my twins came. I can honestly say that I am on the computer several times each and every day. First it was for research. Researching twins, then prematurity, then Down Syndrome, then PDD Autism, and certain therapies, and many..many..many other things that go along with life with twins with Down Syndrome. The best part of all of this is the connections I have made online with several families who have been blessed with children with Down Syndrome as we have. I have found families with identical twins with DS, I have found families who have adopted multipul children with Down Syndrome, I have found families dealing with health issues as we have, I have found families who share what works for them in a specfic situation, I have found more love and support from others all over the world via the wonderful thing we call the internet. I have found my second family online. I say its sometimes sad that I have to find resources and support from people hundreds or thousands of miles away from me, let alone from people I may never meet face to face EVER. Yet we still have the common connection that makes us treat each other with respect and love through our cyber chat rooms.

A great project one mom put together is called the T21 Traveling Afghan Project. Its a great idea and I enjoy following this project as it goes one. Here is a bit of information about them taken from their blog:

There is a very special blanket making it's way from one family to another all over the world.

The common tie? Down syndrome.

Each family who receives the afghan for one week has a member with T21.

They get the blanket, take photos with their family and pass the blanket (and an accompaning journal) on to the next recipient.

One blanket. Fifty US states. Many countries. Hundreds of families. One common thread!

If you have never heard of this project, I'd encourage you to check out the stories, see the happy faces, and share in the excitment of a small afghan that will bring joy to so many families knowing that we are all in this together, no matter where we live, no matter what our race or gender, how much money we make, what our beliefs or outlook on life is, we all are bonded by Down Syndrome. It's simply a true blessing from God above. (In my case, I've been doubly blessed!!) Those who aren't here sometimes just don't understand.....

Saturday, August 1, 2009

Isaac's Post-Op Report

Surgery was Wednesday..

Thursday, Isaac was acting just like his own self, into everything, running around, falling down, getting back up and doing it all over again. I was surprised at how well he was doing. I did give him pain medicine morning, afternoon, and night. Maybe more for me..than him. He must have very high pain tolerance as he only got fussy a few time throughout the day. His TSS came and worked with him for 5 hours this morning, ate lunch, napped, got up and continued with his normal routine. Then he went to grandma and papa's so we could head out to a sign language class being given by our local Arc branch, and then home to bed. It was a rather good day.

Friday, I had decided to send Caleb to Stepping Stones (the twin's preschool for autistic children) without Isaac today. I was afraid that Isaac may get bumped or fall or something and hurt his tummy. So me and three kids were ready to head out the door and I started to get Isaac ready to hit the mall with me, Camille and Elijah. As I was changing his diaper I decided to remove his dressing from the surgery as it looked a little wet from drainage or something. We were allowed to removed it today. So I started to take off the corner and immediately sensed something was WRONG!! I incision was open. I was so scared I couldn't even continue to remove the bandage. I tried to put it back on and called the pediatrician to tell them I was coming right over after I dropped of Caleb. As soon as I dropped off Caleb to school the phone rang and it was the pediatricains office suggesting I call Children's and see where I should go, their office or the ER. They suggested I start at pediatrican's office. Once there, they removed the rest of the bandages and cleaned out wound and tried to put steri strips on the close it. No Go!! Off to Children's we go. The surgeon there explained to us that once you leave the OR which is a steril environment and have something like this happen we cannot close the wound back up because there would be to much bateria there and the possibility of infection was to great. So they taught us how to pack the wound, wet gauze, then dry gauze and tape. We have to change this three times a day and will go back to see him again next week. This will take two to three weeks to heal up. In that time there will be no baths, no swimming, and no rough housing... OH GEEZ. Caleb is in the tub as I'm typing this and its killing Isaac. Tom has to keep the door shut to the bathroom to keep Isaac out. Poor Guy.

Here is two photos I took tonight when we changed the bandages. It doesn't look as bad in the photos as it does in real life. Please keep him in your prayers that this heals up without infection and the scar will not be to bad. This is the whole reason for this scar revision surgery he had, to repair an ugly scar... :(

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and you can see its not affecting him that much:
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Wednesday, July 29, 2009

Isaac's Surgery is Over

Today was a very stressful day for all of us especially Isaac. I think the waiting is the hardest part for sure. We scheduled this surgery about 6 weeks ago and it was here before we knew it, but today was the longest day. We arrived at Children's Hospital at 6am. Pre-op stuff until 7:30, they took him back at 7:45am and surgery lasted until a little after 10am. He was getting some dental work done today and two scars repaired from when he was an infant in the NICU. The scars kept getting sores on them so they scrapped off the old scar, sewed him up with stitches on the inside and glued the top skin together. We thought the dental work was going to be the easy part...but...we were wrong. Once the dentist got in there they x-rayed his mouth and called us in the waiting room to explain that they found a little more than they anticipated. There were cavities starting between all of his teeth. Due to his big brother having bad teeth, and due to his Down Syndrome, and due to the fact that he has major sensory issues with his mouth he said he would be putting crowns on a few teeth instead of just filling them. Tom and I were like OK. Whatever you have to do is fine. So an hour and a half later they called us back to recovery and we were stunned at what we saw. Poor Isaac has ALL of his bottom teeth crowned and all his top molars crowned. The other teeth still exposed are the top front four teeth. Its quite a site to see. Don't get me wrong, we weren't upset about it, just a little stunned by the site of a completely silver mouth. I still have not gotten the greatest photo of that to share, but I will.

Until then, here are photos from today taken from my cell phone (what a day for me to forget my camera!!) Has anyone EVER seen a kid with all crowns?????

Sunday, April 26, 2009

Day 5 in hospital

Well today has gone pretty good. The boys are both eating and drinking better, they are playful and back to hummming all the time. This is something I actually forgot about. They are very vocal all day long either humming or singing and I haven't heard them for a few days, so today is an indication that they are feeling better. The doctor came in today and said he expects another day or so for discharge. They will be discharged when they can sleep unassisted by oxygen for a whole night. Doctors had their level requirement set at 92 for discharge and we've asked them to take it down to 90. So we're hopeful that tonight is the night. C'mon boys!!!

One thing Tom and I noticed today is how VERY observant both twins are. When a nurse comes in the room they start scratching their ears, which they do when they are upset but when they put on their rubber gloves they throw a fit. They KNOW they are coming in to do something to them. When the respiratory therapist come in to give them a breathing treatment they throw a little stink but they get over it pretty quick cause they know they are just getting their treatment. When a cleaning lady comes in they are social to her and dont hardly notice her, but when she puts on her rubber gloves to remove garbage or diapers they start crying... I'm actually really proud of them, this is a great thing :)

Tom and I enjoyed a day with them playing and being silly. I took lots of pictures today and made a little montage to share.



Hopefully tomorrow I will be describing our discharge.

P.S. Please keep Elijah in your prayers tomorrow I am leaving the twins here at the hospital with my mom most of the day so I can take Elijah back to the pediatric dentist in State College to finish a root canal they started three weeks ago. He's been in alot of tooth pain lately and its a different tooth than the one they are planning on working on tomorrow. We'll see what comes of the visit.

Thursday, April 23, 2009

Hospital stay x2

The twins have been fighting off a really bad cold and fever for 5 days. On Tuesday I took them in to be check out and they were both given a shot of steroids in the doctors office. We were told to come back the next morning for another shot and to monitor their progress. When we went in Wednesday they had very low oxygen levels (88) and we were given another shot and admitted to the hospital. Here is how Isaac spent most of the day yesterday:

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And here is Caleb watching TV, which is all you can do when your three and hooked up to an IV:

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Today started out about the same as yesterday, but as the day went on I saw the spunkiness come back into the boys. They were being silly and restless and kept signing car, meaning "get me outta here" Here's some photos from today:

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So we're on the mend. No pneumonia, No RSV, just a virus that attacked the lungs and flared up their asthma. Its 10:00pm and they are both asleep and both needing the blow-bye oxygen so that's an automatic another night stay, but I am hopeful we will be home Saturday. Thank you for all the positive thoughts and prayers, keep them coming we would love to make it home for the weekend to enjoy the summer like weather here in PA.

Monday, February 16, 2009

Grab Isaac's Button

Isaac is participating in a National Charity Model Search raising money for a charity called Now I Lay Me Down to Sleep, help me spread the word:




The code will produce this on your website:

Isaac
Grab This Button

Grab Caleb's Button

Caleb is participating in a National Charity Model Contest to benefit the charity Now I Lay Me Down To Sleep, each vote costs $1, Please help us spread the word:


The code will produce this on your website:
Caleb
Grab This Button

Thursday, February 12, 2009

Down Syndrome Adoption Awareness Poem

I read this from a blog I follow and it really made me think. So here it is for your thoughts:

WHILE WE WERE....In Memory

While we were eating...
... they were hungry

While we were playing...
... they were restrained

While we were tucking our kids into bed...
... they were alone

While we turned up the heat...
... they laid in the icy cold

While we wrapped our children in blanket sleepers...
... they laid in their own excrement

While we sang songs and listened to music...
... they listened to the screams and cries of those around them

While we rocked our babies...
... they silently rocked themselves

While we hugged our kids...
... they scratched at their own faces and pulled their own hair for stimulation

While we cried over scraped knees...
... they moaned in their loneliness

While we brushed our daughters' beautiful hair...
... they had their heads shaven to stave off the lice

While we fought off the flu with love and nourishment...
... they got the flu and went Home.

No longer suffering... but so many more still are.

In memory of those that have never felt the love of a family, but have passed away alone. Today we learned of the passing of these two girls in Eastern Europe.


Margarita

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Katarina

Katerina


For those who have asked, please feel free to share this on your blog. And yes, I wrote it.

Thank you Meredith for helping us to feel so blessed with the life we have and to pray for those who do not.

Tuesday, February 10, 2009

Help Us WIN a National Model Search

We are excited to be entered into the 2009 National Charity Model Search with all proceeds going to a wonderful organization called Now I Lay Me Down to Sleep, an organization that provides keepsake portraits to parents who will never have the opportunity to take their child home from the hospital. This is an organization that is such a blessing to parents who may not otherwise have a professional photo taken of their child. When Isaac was in the NICU we came so very close to losing him to Necrotizing Enterocolitis (N.E.C.). We endured such fear and grief that we may lose our child for just a few short hours, and this allows me to completely sympathize for those parents who have actually lost their child.

Every dollar you donate to the organization under the boys photo counts as a vote for one of the boys. We could not enter the boys together so they are separate photos, but both very cute ones. And I want you to know that each dollar counts! One vote puts us one closer than we were before, and wouldn't it be fun to see a child with Down Syndrome win a national photo contest??

See and Vote for Caleb here (he's very excited in this photo):
http://www.sandypucvotes.com/pickpic/gallery/image.php?id=607

See and Vote for Isaac here:
http://www.sandypucvotes.com/pickpic/gallery/image.php?id=606

Please help me spread the word and help out a great organization in the process :D

Sunday, February 8, 2009

Rest in Peace Dr. William Cohen

I found out yesterday that the Down Syndrome Community has lost a wonderful doctor. Dr. William Cohen of Childrens Hospital in Pittsburgh died Friday evening of a massive heart attack. Its with a very sad heart that I must say Good Bye. He was by far the most caring, passionate about Down Syndrome, passionate about families, passionate about advocating and educating Down Syndrome man I'm sure we will ever meet. Because we have twins when we go to meet with him we get four hours of his time. One might think that a four hour doctors appointment might sound excruciating but it was very far from it. We enjoyed every minute of it. He listened to us, asks questions and offered advice, then he played with boys a bit, did a medical evaluation and then came back and recapped the appointment with us and made recommendations for what to do next.


This is what I read from NDSS.org today:

"Dr. Bill Cohen, national leader in the Down syndrome movement and dear friend of the National Down Syndrome Society (NDSS), died on February 6, 2009. He touched the hearts of families around the country and was a respected colleague to all physicians who knew him. Dr. Cohen was serving on the NDSS Clinical Advisory Board.

As a developmental-behavioral pediatrician, Dr. Cohen was the director of the Down Syndrome Center at the Children’s Hospital of Pittsburgh. He was the co-founder and co-chair of the Down Syndrome Medical Interest Group (DSMIG) which produced the seminal healthcare guidelines for all persons with Down syndrome, ages 0-18. He also co-authored the book, Down Syndrome: Visions for the 21st Century, published in 2002 on behalf of the NDSS. For all of these visionary efforts, he was given a Clinical Service Award by the NDSS in 2004.

His colleagues remember him best for his seemingly endless amount of joy, his eager willingness to share best practices, and his earnest belief that all people with Down syndrome deserve the best from their medical providers and society, at large.

In addition to his work on Down syndrome, Dr. Cohen was a leader in teaching and studying doctor-patient communication, family adaptation to chronic medical conditions, clinical hypnosis, and family therapy. He was a clinical member of the American Association of Marriage and Family Therapy, the American Academy of Pediatrics, the Society for Developmental and Behavioral Pediatrics, Ambulatory Pediatric Association, and the American Balint Society.

The world will continue to change positively because of Dr. Cohen’s lasting impressions. The NDSS family misses him intensely and will be grateful to him forever."

And when you have some time it is VERY much worth every minute to watch this video of his last presentation with the NDSS:
http://www.ndss.org/index.php?option=com_content&view=article&id=157%3Ahigher-education&catid=57%3Ahigher-education&limitstart=2&Itemid=140

Prayers go out to his family, co-workers and the all of his patients who feel such a loss of a great doctor that will be impossible to replace.

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