|
Post by cheyanne12 on Sept 20, 2007 21:13:31 GMT -5
I appreciate all the feedback. No, we did not even ask the heart specialist about preschool... we just know our son did get croup when I worked in a daycare, and I was sick all the time which meant he got sick from me. I guess I was the one who opened the can of worms by just asking our OT about preschool, how often they go and all. My four teens never went to preschool, and one graduated with honors. Of course my teens do not have Down syndrome, but I felt then that kids are just pushed out of their childhoods and it becomes a race to see how much they can do. I've read about unschooling in the past and I did homeschool one of my children for what felt like a short time. He is now in high school and he has always struggled with school. Noah went potty three times for me yesterday... today was a different story! HUGE SUCCESS in one day, but now I just need to keep at it.
|
|
|
Post by cheyanne12 on Sept 16, 2007 19:38:50 GMT -5
My thought was to put him in preschool after the 6 mos of aspirin if he is doing okay. I guess since he is the baby and my teens are in school I was thinking socialization and friends for him. However, I too worked in a daycare and found out I was sick quite often, and then Noah ended up in the ER with croup. So we decided then my job wasn't worth the risk to Noah, and I had been on two antibiotics and wasn't getting better. Anyway, I am not happy with the idea of "this is how we get him moved into preschool by saying he is not advancing at home because he doesn't know how to use the scissors." He has preschool teachers, OT, PT, and speech coming into the home from the school district but we did take a break for the summer. The idea of saying he is not advancing in the home after ONE visit with the OT just doesn't sit right with me in my gut. I sit back thinking he had heart catheterization at three years old and the last thing we were worried about was if he was capable of using scissors when we were focused on his life, and his brother's life as well. I guess I do not agree that all children will learn the same thing at the same rate, and sometimes the goals just seem unrealistic to me. I don't think my biological children who do not have down syndrome even knew how to use the scissors till they went to school. I never thought anything of it. I didn't send them to preschool either because I believed that we have become a very fast faced society expecting so much from the kids and they aren't even allowed to be kids at times. A teacher draws a picture and thinks ALL children should draw the same picture when each child is an individual with minds of their own. I guess I need to ask myself if there is a better way.... I'm feeling stressed during a time Noah and I should be enjoying learning.
|
|
|
Post by cheyanne12 on Sept 16, 2007 16:18:40 GMT -5
Hello! Noah had his heart catheterization in Aug and is doing well, but we took the summer off from in house preschool and therapies. Anyway, over the summer I did not work on the scissors since I had other worries here. I made one mention of Noah attending preschool and they ran with it... to the point of wanting to write him up as not learning at home to get him into the IU program and he doesn't use scissors. He is three years old, going on four in January. I'm still trying to get him to use the potty. He will occassionally have a success, but I think I need to make up a very strict schedule and try putting him on more frequently.
Anyway, my husband is against preschool because he just had the heart catheterization and he will be on aspirin for 6 months so he's worried about Noah getting sick. So the new inhouse teacher told me "Husbands dont' always know what is best" which made me feel awkward especially since this was my first meeting with her. Then later that day the speech therapist called me to say she was called to come and evaluate my son and I have a feeling she too is looking to say he is not advancing at home.
Noah is also having problems with throwing... he can color for a little while and then he will throw the crayon. I feel it's almost as if he has an impulse problem since he does the same when it's time to eat and he can throw something he wants a little bit later.
Anyway, I wanted to see at what ages your children were successful with scissors and if you found that this is pushed by all occupational therapists at the age of three.
Any success stories on potty training or use of scissors would be nice to hear.
|
|
|
Post by cheyanne12 on Sept 16, 2007 16:30:45 GMT -5
Thank you for sharing that.... definitely a tissue thread! I never heard the song before, but I do believe our kids are miracles. We were fortunate enough to adopt our little guy, and I'm enjoying our trip to Holland!
|
|
|
Post by cheyanne12 on Sept 16, 2007 15:53:41 GMT -5
Happy Birthday Jackie!
|
|
|
Post by cheyanne12 on Apr 12, 2007 17:21:28 GMT -5
Thank you so much for sharing this... I just HAD to pass it on to friends and family.
|
|
|
Post by cheyanne12 on Apr 12, 2007 17:11:45 GMT -5
What a beautiful picture! I enjoyed seeing your special angel.
Suzanne Wife of David, Mommy to Savannah (19), Curtis (18), Brandon (16), Nathan (14), and Noah (3, DS)
|
|
|
Post by cheyanne12 on Apr 7, 2007 13:16:55 GMT -5
I found another mother whose daughter had catheterization for her ASD, she was in the hospital one day, but her daughter had to take aspirin for 6 months afterward. She expressed she was concerned about her daughter's stomach and Reye's syndrome, but her daughter had no problems. She told me took a leap of faith and chose this cathetization over open heart surgery thinking that she could always go back and have these devices removed and get open heart surgery at a later date. The only thing I can think is that this can buy time for science technology to advance even with open heart surgery. I'm still up and down about the decision. It seems as though my three year old son has an angel named Bella. Today he told me Bella is sad. He first pointed out Bella in the hospital emergancy room when he had croup and couldn't breathe, then he pointed again to a blank wall in the cardiologists office. One day he pointed to a nursery rhyme book to a woman wearing a long gown and white apron and he said "Bella, Bella... pointing to this woman."
|
|
|
Post by cheyanne12 on Apr 5, 2007 21:30:01 GMT -5
|
|
|
Post by cheyanne12 on Apr 5, 2007 12:54:13 GMT -5
Hello...
It's been awhile since I've posted anything online. Noah, who is now three, is active and the light of our lives. Noah has down syndrome, coloboma (iris and retina in the right eye), and two holes ASD (7 mm) and PDA. We were told at birth Noah's holes would close up, but that hasn't happened so this week we recieved a call from the pediatric cardiologist telling us we have two options... open heart surgery or using a coil and another umbrella device to close up the holes going through his vein. With the devices, there would be less complications since you wouldn't be opening up his chest and stopping his heart but their could be leakage even after the devices are put in place. With the open heart surgery the holes would be stitched shut and that would be the end of that... however this also means putting him on a ventilator and the stay in the hospital would be longer, plus he'd have a scar on his chest for life.
I guess I'm wondering about the long term effects on Noah's life using the devices. I'm also wondering if I can connect with families who have gone down this road and have had to make this choice.
We greatly appreciate feedback.
Sincerely,
Suzanne Wife to David, Mommy to Savannah (19), Curtis (18), Brandon (16), Nathan (14) and our adopted Noah with ds (3)
|
|
|
Post by cheyanne12 on Apr 7, 2007 22:09:48 GMT -5
Thank you mb, and everyone who responded to my poem. I hope you have a blessed Easter! Noah certainly is a gift to our family, and everyone he meets.
|
|
|
Post by cheyanne12 on Apr 6, 2007 18:12:15 GMT -5
Susan... yes it was a LONG WAIT and we sure want to make sure we do all we can for our adopted son now with the talk of repairing his ASD and PDA. I received a most welcome letter from a pediatric cardiologist in Cinncinnati, Oh today. He has been doing catherizations since the 1980's. I also received a phone call telling us we can meet with the pediatric cardiologist and the surgeon in two weeks so we can ask questions. I think it's a good idea to get more than one opinion. I noticed the group is planning a trip to TN.... I had high hopes of taking a vacation this summer, but I wasn't sure what the docs would advise for Noah's heart closure. We were told awhile back it wouldn't be till he turned 4, but now that has all changed. I'm just SOO thankful we have such a wonderful group to turn to!
|
|
|
Post by cheyanne12 on Apr 5, 2007 12:25:41 GMT -5
My wind, a poem dedicated to my adopted son with Down syndrome. You can find this online with a picture by searching Google.com and the authors name.
My Wind
Strands blowing in the wind,
As your eyes grace the blue sky,
Short, stubby fingers pointed up,
A question in your eye.
Your words may be limited,
Your ideas sail fast,
It’s fun trying to keep up,
My little breeze to the past.
Big mansions, funny faces,
On gales as clouds roll by,
Frolicking leaves, green waves of grass,
Sunlight beaming from your eye.
Blowing baby lotioned kisses, Pursed lips so heaven sent, Warmth coming from your laughter, Daffodils all loved, now bent.
Brown butterflies cast down, Thwarted in a whirling gust, Stumbling you fall, A merriment covered all in dust.
As the day nears its end, You take my breath away, By all the little things you do, Down syndrome doesn’t come in play.
Angel drawing inner strength, A strong wind cast from cloud nine, Bursting, blowing, teaching all, God's wind pushing from behind.
How gently you do play, Gliding...teasing as you go, Surpassing expectations, Zooming daily to and fro.
© 2007 Suzanne DeRemer Floyd
-------------------------------------------------------------
I became inspired today after taking my adopted three year old son for a walk on a windy day. His laughter and curiosity are both inspirational and infectious.
I'm waiting on a return phone call from a pediatric cardiologist this week to find out if we will be having heart surgery this year or next. It's going to be a long week! When we adopted Noah, doctors told us the holes in Noah's heart would close up on their own. However, that is just not the case now.
Noah, a gentle breeze in my family, taught us a whole new way of living. I've learned some sign language and techniques on how to deal with sensory issues. Our family is constantly learning along side of Noah. We no longer take simple daily tasks for granted. Noah reminds us to stop and smell the flowers, be thankful for the little things and work hard for the rest!
Noah learned to walk at the age of nineteen months. Key is that after much time and effort... he did it. At the age of three, he only speaks in one to three word phrases. His speech, although limited, gets the point across. We've learned with love, patience and persistence ANYTHING is possible.
|
|
|
Post by cheyanne12 on Sept 26, 2005 21:08:16 GMT -5
I'm wondering where to get the best life insurance rates for our son in PA. Has anyone had problems getting life insurance and does anyone have recommendations of what companies have the best insurance rates for our kids? Thanks.
Cheyanne
|
|
|
Post by cheyanne12 on Sept 1, 2004 1:01:33 GMT -5
Hello.... I have a seven month old baby boy with down syndrome whom I am trying to adopt. My family is hoping to move to NC very soon and I'm hoping to find a few new friends. I wrote a poem tonight but I don't see a board to post poetry here.
|
|