Wednesday, April 29, 2009
Tuesday, April 28, 2009
She's like my brother
For the past three weeks when I have taken Ruby to therapy there has been a lady there with her little boy ,who has Down syndrome ,and his big brother, who looks to be about 10 or 11.I always smile at this lady and I wish I could talk to her but she only speaks spanish and I can't.
Today I was sitting there in the office waiting to be called back for Ruby's appointment when I heard a voice say,"How old is she?" I looked up and the older boy was asking me about Ruby,I answered,"She's nine months," and smiled at him.He looked at Ruby and smiled a minute and then he said,"She's like my brother," and I said with a smile "Yes,she is.How old is your brother?" He answered that his brother was five years old. He smiled, said something to his mother and then went back to reading his book.
I don't know why but I have thought back to that brief exchange with that young boy all day.Just the tone of his voice and the way he looked at me,like we shared a special secret.It made me happy then and it makes me happy now and brings tears to my eyes ."She's like my brother."
Today I was sitting there in the office waiting to be called back for Ruby's appointment when I heard a voice say,"How old is she?" I looked up and the older boy was asking me about Ruby,I answered,"She's nine months," and smiled at him.He looked at Ruby and smiled a minute and then he said,"She's like my brother," and I said with a smile "Yes,she is.How old is your brother?" He answered that his brother was five years old. He smiled, said something to his mother and then went back to reading his book.
I don't know why but I have thought back to that brief exchange with that young boy all day.Just the tone of his voice and the way he looked at me,like we shared a special secret.It made me happy then and it makes me happy now and brings tears to my eyes ."She's like my brother."
Monday, April 27, 2009
Thyroid Function
I got a call from the pediatrician's office today about Ruby's bloodwork.Her levels on her thyroid test were 3.5 which they told me was borderline for low function.I will have to take Ruby back in 6 weeks for another thyroid test.Do any of you have experience with this?I didn't know all the right questions to ask when I was on the phone with the dr.'s office and now I feel a little worried.They did tell me if they need to she will be treated with medication.
Sunday, April 26, 2009
Soccer Tournament
Two of my girls were in a soccer tournament this weekend.My husband's(he's the one in the blue ball cap) team won 3rd place,my older daughter plays on his team.I usually take Ruby with me to the games but it has been too windy this weekend to get her out.Here are some pictures of our fun.
Friday, April 24, 2009
Nine Month check up
I took Ruby for her nine month check-up today.I can't believe she is already nine months old!
She is 14.5 lbs which puts her in the 50th percentile for weight on the down syndrome growth chart and she is in the 25th percentile for length at 25.5 inches long.She is such a little person,she is in 3-6 month size clothes.They also did blood work today to check her blood count and thyroid,I will hear back on that on Monday.
She is doing great! She can sit propping herself up with her arms for a few minutes and she has started getting up on her hands and knees and rocking back and forth .She has her own cheering squad every time she does anything:) We are all so excited for her anytime she does something we know is hard for her.Go,Ruby!
She is 14.5 lbs which puts her in the 50th percentile for weight on the down syndrome growth chart and she is in the 25th percentile for length at 25.5 inches long.She is such a little person,she is in 3-6 month size clothes.They also did blood work today to check her blood count and thyroid,I will hear back on that on Monday.
She is doing great! She can sit propping herself up with her arms for a few minutes and she has started getting up on her hands and knees and rocking back and forth .She has her own cheering squad every time she does anything:) We are all so excited for her anytime she does something we know is hard for her.Go,Ruby!
Wednesday, April 22, 2009
Monday, April 20, 2009
Z-Vibe
I was having trouble getting Ruby to open her mouth to eat her baby food ,so I asked her Speech Therapist for help and she got Ruby to eat using a Z-Vibe spoon.The Z-Vibe vibrates and Ruby loves the way it feels on her mouth.She tries to grab the spoon from me to put it in her mouth! I ordered her spoon from http://www.superduperinc.com/ because they have free shipping but I wish I had ordered straight from the company that makes the Z-Vibe because they had more options to choose from http://arktherapeutic.com/Merchant2/merchant.mvc?Screen=CTGY&Store_Code=ATSI&Category_Code=Z-Vibes-Tips-Kits. The therapist told me to get the spoon attachments that have the little bumps on the bottom of the spoon.This tool wasn't cheap but it seems to be helping Ruby so it was worth it! I will also be able to use the stimulator attachment for Ruby's therapy.
P.S.
As you can see in the pictures Ruby's sunburn has healed.Thank you for all the nice comments!
Saturday, April 18, 2009
What I Look Like
Tricia at Unringing the Bell asked her readers to take a picture of themselves while reading blogs.So here I am this afternoon reading your blog:) I just put Ruby down to play,she usually reads the blogs with me;) That big blonde lump coming out of the top of my head is my 11 year old boy walking by.
Now what do YOU look like?
Wednesday, April 15, 2009
Monday, April 13, 2009
Sunburn
You would think after having 11 kids I would know to put sunblock and a hat on my baby even on a cool and windy day, but alas no,this happened while we enjoyed my 14 yr. old daughter's soccer game on Saturday afternoon.Ruby never complained ,she was her sweet happy self even with a sunburned face.Because this happened she couldn't wear her beautiful Easter bonnet I bought for her:(
Sunday, April 12, 2009
The Resurrection
The CrucifixionWhy did the sun his beams conceal
As if unwilling to reveal
That deed of mankind on the day
When Jesus, at the altar, lay
A willing sacrifice.
Earth, too, in terror shook, when
He The Mighty, died on Calvary;
When for our sins He bowed His head,
Gave up the ghost, and quickly sped
To regions of the dead.
And some who had for ages long
Been wrapped in slumber deep and strong,
Awoke, and by their converse showed
That death no more dominion had
In that He died.
Why did He die?
Ah! blissful thought,
When we near death and hell were brought,
He left His father's courts above--
O, list to such amazing love--
And died to save.
Why did He die?
'Twas love divine
That caused Him all things to resign--
A heavenly choir, celestial home,
Exalted seat, seraphic song,
And all to save.
Blest thought! He reigns victorious now,
To whom all earth will shortly bow,
Let men below and saints above
Wonder at such stupendous love,
As caused their God to die.
In all the world;
There is no place
As dear to me
As in an empty tomb within Gethsemane.
Men singing the praises
Of the cross,
And rightly so,
Yet it is to the empty tombI love to go
It's there with Paul I daily die
When sore oppressed,
It's there, where men are loathe to go
I sweetly rest.
It's there, when heart ache'sangry waves envelop me,
In Faith,
I lift my mournful face
My Lord to see.
There is no place so fraught with power
Our souls to save,
As is our Lord's last resting place,
His empty grave.
In darkest hours of grief,
beside a new made mound,
I go again, the depths of God's
Great love to sound.
And while I view the grave and clothes,
The echoes ring:
"O, Grave, where is they victory"
O, Death, thy sting?"
As, one by one, the loved ones cross
the threshold's gloom,
I fain believe, embrace, receive,
The Empty Tomb.
by Mary D. Sammons from
"Streams in the Desert 2"
Saturday, April 11, 2009
Easter Sunday message
Alistair Begg is one of my favorite preachers,I listen to him all the time,his website is my homepage.Here is :An Easter Sunday message by Alistair Begg
New Book for Siblings
Book Web site: http://www.lanari.net/, click on Walk with Me. Link to order book, see synopsis and donate the book to new parents, physicians' offices and hospitals. Click on "Family and Friends" to see sibling photo gallery.
Unique challenges affect siblings caring for disabled
Appleton conference offers way to share stories
By Kathy Walsh Nufer • Post-Crescent staff writer • April 10, 2009
When Kristin Lanari's sister Lauren was born with Down syndrome, there was not much in the way of helpful resources for parents, much less siblings of people with disabilities.
Lanari, now 29, was 10 at the time, and remembers feeling at a loss for support and information. No group like the Fox Valley Sibling Support Network existed for her then.
"As siblings you are left hanging," she said. "You don't understand how it's going to impact your life."
Lanari, who now is standby guardian for 19-year-old Lauren, has learned a lot since then, and decided to share her hard-won knowledge by writing "Walk With Me," which has just been released.
"I wanted to create an educational book to let siblings know they are not alone and can live wonderful, full lives and still have a relationship with their brother or sister, regardless of their disabilities," she said.
Lanari will discuss the book, which features 31 stories by siblings from 20 Fox Cities families, during the 4th Annual Wisconsin Adult Sibling Conference April 23 at the Radisson Paper Valley Hotel in Appleton.
In four years of focusing on the life-long bond adult siblings have with their brother or sister with special needs, the conference has become a key networking and learning resource for families, said Harriet Redman, executive director of the Fox Valley Sibling Support Network.
"I network with adult siblings throughout the country, and siblings are more and more concerned about their vulnerable brothers and sisters, especially as they see their parents age and state and county budgets shrink," Redman said.
"Even siblings in their 20s and 30s are looking for information and connections that can help in addressing the issues of housing, care, jobs, legal and financial issues and social integration for their brothers and sisters."
Lanari will talk about what it was like growing up with Lauren, whom she describes as a "total ham," and their relationship including the joys and the heartache.
"It's not always easy. My brother and I were both ridiculed for having a sister with a disability, and someone in high school told me my sister was punishment from God for something my family had done. It's not a complete cakewalk, but so much happens that's wonderful you forget the bad stuff."
Award-winning author and filmmaker Garth Stein, noon keynote speaker, will talk about his relationship with his sister, Corey, before and after her brain surgery to deal with her epilepsy.
Stein, who grew up in Seattle, said a common theme in his novels is "connectivity and acknowledging it. Everything we do affects everyone around us. Sometimes we try to deny that."
Having a sibling with a disability does change the family dynamic, he said, noting his first-hand knowledge, but it is no reason to feel sorry for oneself.
"Sometimes we get caught up in the negative aspect and blame others for our misfortune, rather than stand up and say this is what it is, now how do I move forward and take it as a life lesson and learn from it," he said.
Paula Hoglund, of Appleton, shared her story about her brother Johnny, 50, in "Walk with Me."
She has attended past sibling conferences and this year is going with her mother and sister.
"I think it's vitally important for any sibling to attend," Hoglund said.
When Johnny, who has Down syndrome, was born in 1958, she said, "It was our understanding he would not live beyond his 20s. We never thought we were going to grow old with him and play a role in taking care of him."
Hoglund, 57, said the initial discussion with her mother about Johnny's future was difficult, in part because her mother, now 85, had been such a trailblazer in making the decision to raise him at home rather than send him to an institution.
She also worked to increase opportunities for him and other people with disabilities.
In 2004, when she was diagnosed with cancer, his siblings took on more of a helping role.
Today, Johnny lives and thrives in a group home and his mom, who is in remission, remains his legal guardian but has taken all the legal steps for transferring that guardianship when necessary.
That's a relief to everyone, said Hoglund, who calls her mother's health scare a "blessing in disguise" because it was a much-needed dose of reality to her and her siblings.
Now they have a good foundation of knowledge to work from in caring for Johnny, she said, but their work is not over by any means.
"As Johnny ages, we are aging as well. We have to continue the conversation," she said.
Kathy Walsh Nufer: 920-993-1000, ext. 290, or knufer@postcrescent.com
This article can be found here:http://www.postcrescent.com/article/20090410/APC0101/904100457/1004&located=RSS
Unique challenges affect siblings caring for disabled
Appleton conference offers way to share stories
By Kathy Walsh Nufer • Post-Crescent staff writer • April 10, 2009
When Kristin Lanari's sister Lauren was born with Down syndrome, there was not much in the way of helpful resources for parents, much less siblings of people with disabilities.
Lanari, now 29, was 10 at the time, and remembers feeling at a loss for support and information. No group like the Fox Valley Sibling Support Network existed for her then.
"As siblings you are left hanging," she said. "You don't understand how it's going to impact your life."
Lanari, who now is standby guardian for 19-year-old Lauren, has learned a lot since then, and decided to share her hard-won knowledge by writing "Walk With Me," which has just been released.
"I wanted to create an educational book to let siblings know they are not alone and can live wonderful, full lives and still have a relationship with their brother or sister, regardless of their disabilities," she said.
Lanari will discuss the book, which features 31 stories by siblings from 20 Fox Cities families, during the 4th Annual Wisconsin Adult Sibling Conference April 23 at the Radisson Paper Valley Hotel in Appleton.
In four years of focusing on the life-long bond adult siblings have with their brother or sister with special needs, the conference has become a key networking and learning resource for families, said Harriet Redman, executive director of the Fox Valley Sibling Support Network.
"I network with adult siblings throughout the country, and siblings are more and more concerned about their vulnerable brothers and sisters, especially as they see their parents age and state and county budgets shrink," Redman said.
"Even siblings in their 20s and 30s are looking for information and connections that can help in addressing the issues of housing, care, jobs, legal and financial issues and social integration for their brothers and sisters."
Lanari will talk about what it was like growing up with Lauren, whom she describes as a "total ham," and their relationship including the joys and the heartache.
"It's not always easy. My brother and I were both ridiculed for having a sister with a disability, and someone in high school told me my sister was punishment from God for something my family had done. It's not a complete cakewalk, but so much happens that's wonderful you forget the bad stuff."
Award-winning author and filmmaker Garth Stein, noon keynote speaker, will talk about his relationship with his sister, Corey, before and after her brain surgery to deal with her epilepsy.
Stein, who grew up in Seattle, said a common theme in his novels is "connectivity and acknowledging it. Everything we do affects everyone around us. Sometimes we try to deny that."
Having a sibling with a disability does change the family dynamic, he said, noting his first-hand knowledge, but it is no reason to feel sorry for oneself.
"Sometimes we get caught up in the negative aspect and blame others for our misfortune, rather than stand up and say this is what it is, now how do I move forward and take it as a life lesson and learn from it," he said.
Paula Hoglund, of Appleton, shared her story about her brother Johnny, 50, in "Walk with Me."
She has attended past sibling conferences and this year is going with her mother and sister.
"I think it's vitally important for any sibling to attend," Hoglund said.
When Johnny, who has Down syndrome, was born in 1958, she said, "It was our understanding he would not live beyond his 20s. We never thought we were going to grow old with him and play a role in taking care of him."
Hoglund, 57, said the initial discussion with her mother about Johnny's future was difficult, in part because her mother, now 85, had been such a trailblazer in making the decision to raise him at home rather than send him to an institution.
She also worked to increase opportunities for him and other people with disabilities.
In 2004, when she was diagnosed with cancer, his siblings took on more of a helping role.
Today, Johnny lives and thrives in a group home and his mom, who is in remission, remains his legal guardian but has taken all the legal steps for transferring that guardianship when necessary.
That's a relief to everyone, said Hoglund, who calls her mother's health scare a "blessing in disguise" because it was a much-needed dose of reality to her and her siblings.
Now they have a good foundation of knowledge to work from in caring for Johnny, she said, but their work is not over by any means.
"As Johnny ages, we are aging as well. We have to continue the conversation," she said.
Kathy Walsh Nufer: 920-993-1000, ext. 290, or knufer@postcrescent.com
This article can be found here:http://www.postcrescent.com/article/20090410/APC0101/904100457/1004&located=RSS
Friday, April 10, 2009
Thursday, April 9, 2009
Diagnosed with Down syndrome
A friend of mine has a friend who just had their second child and that child was diagnosed with Down syndrome.My friend would like to know what she can say to her friend to be an encouragement.What would you have liked for people to say to you when your baby was born?
Wednesday, April 8, 2009
Spit Up
I am so sick of spit up!!Ugh!Spit up on my clothes, in my hair, on the floor, on Ruby,at home,at church,at therapy!Sigh.I wish I had a video of the time my 14 yr old daughter lifted Ruby in the air over her and Ruby spit up all in sister's mouth!!!!Ick! My poor little Ruby spits up all the time.I have asked her pedi. about it and she thinks it will get better when Ruby's stomach muscles get stronger.I hope it's soon!
Monday, April 6, 2009
Awards
I received these awhile back and am just now getting around to passing them on.
Lemons to lemonade blog award from Monica
Here are the rules for the award:1) Put the logo on your blog or post.2) Nominate at least 10 blogs that show great attitude or gratitude.3) Link to your nominees within your post.4) Let the nominees know that they have received this award by commenting on their blog.5) Share the love and link to the person from who you received your award.
Thank you for this award, Monica!
I'm passing this on to:
Favored Grace
A Place in the Sun
Mothering by the Seat of My Pants
My 2 Boys
My Life with Gabriel
Opposite Kids
Hope for Elijah
Zip-Perdue-Dee-Dah
Hannah's Shenanigans
Anne and Whitney: Up, Down, and All Around
From Datri
"These blogs are exceedingly charming. These kind bloggers aim to find friends and be friends. They are not interested in self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships will be propagated. Please give more attention to these writers. Deliver this award to eight bloggers who must choose eight more and include this cleverly- written text into the body of their award.
Sending on to:
http://baetenfamily.blogspot.com/
http://hust-family.blogspot.com/
http://waldenhouse.blogspot.com/
http://braskabear.blogspot.com/
http://bridgets-light.blogspot.com/
http://sarahely8989.blogspot.com/
http://dayswithdylan-laurie.blogspot.com/
http://favorandgrace.blogspot.com/
Lemons to lemonade blog award from Monica
Here are the rules for the award:1) Put the logo on your blog or post.2) Nominate at least 10 blogs that show great attitude or gratitude.3) Link to your nominees within your post.4) Let the nominees know that they have received this award by commenting on their blog.5) Share the love and link to the person from who you received your award.
Thank you for this award, Monica!
I'm passing this on to:
Favored Grace
A Place in the Sun
Mothering by the Seat of My Pants
My 2 Boys
My Life with Gabriel
Opposite Kids
Hope for Elijah
Zip-Perdue-Dee-Dah
Hannah's Shenanigans
Anne and Whitney: Up, Down, and All Around
From Datri
"These blogs are exceedingly charming. These kind bloggers aim to find friends and be friends. They are not interested in self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships will be propagated. Please give more attention to these writers. Deliver this award to eight bloggers who must choose eight more and include this cleverly- written text into the body of their award.
Sending on to:
http://baetenfamily.blogspot.com/
http://hust-family.blogspot.com/
http://waldenhouse.blogspot.com/
http://braskabear.blogspot.com/
http://bridgets-light.blogspot.com/
http://sarahely8989.blogspot.com/
http://dayswithdylan-laurie.blogspot.com/
http://favorandgrace.blogspot.com/
Thursday, April 2, 2009
A Wonderful Organization!
Hiedi at Living in the Moment posted today about this wonderful organization called
Simply Adorable Blankets .Go and take a look at them!I am going to be ordering a blanket from them for Ruby!
Simply Adorable Blankets .Go and take a look at them!I am going to be ordering a blanket from them for Ruby!
Athlete with Down syndrome beats odds
I love finding and sharing these articles.Our children can accomplish so much with our help.
Down syndrome athlete beats odds
By Alison Herget- For the CDT
Alek Masters would never develop like his peers, never be able to enjoy the same activities as other children his age, the doctors suggested.
Fifteen years ago, Christine and Robert Masters listened as doctor after doctor painted a bleak outlook for their newborn son, who had Down syndrome, a congenital disorder that causes mild to moderate mental handicaps. But the couple did not succumb to the negativity.
“We walked out of that doctor’s appointment pretty much realizing that we were going to do for him what we were going to do for any of
our other kids, and that is offer them opportunities, stimulate them and encourage them to do the best they could,” said Christine Masters, of Boalsburg.
On Friday, Alek and his family will be in Seattle, where he will be honored by the Arlington, Va.-based Council for Exceptional Children with a 2009 Yes I Can! Award for his extracurricular achievements.
Here is the rest:http://www.centredaily.com/news/local/story/1206669.html
Down syndrome athlete beats odds
By Alison Herget- For the CDT
Alek Masters would never develop like his peers, never be able to enjoy the same activities as other children his age, the doctors suggested.
Fifteen years ago, Christine and Robert Masters listened as doctor after doctor painted a bleak outlook for their newborn son, who had Down syndrome, a congenital disorder that causes mild to moderate mental handicaps. But the couple did not succumb to the negativity.
“We walked out of that doctor’s appointment pretty much realizing that we were going to do for him what we were going to do for any of
our other kids, and that is offer them opportunities, stimulate them and encourage them to do the best they could,” said Christine Masters, of Boalsburg.
On Friday, Alek and his family will be in Seattle, where he will be honored by the Arlington, Va.-based Council for Exceptional Children with a 2009 Yes I Can! Award for his extracurricular achievements.
Here is the rest:http://www.centredaily.com/news/local/story/1206669.html
Sixth-grader with Down syndrome to receive special award
On the Upp & Up: Sixth-grader with Down syndrome to receive special award for efforts, accomplishments
By Joe Gulick AVALANCHE-JOURNAL
Thursday, April 02, 2009Story last updated at 4/2/2009 - 1:31 am
Tim and Dolores Upp recall the shock they received on May 2, 1995 - four months before Natalie was born - when they learned from the results of amniocentesis that their baby had Down syndrome.
"It was awful," Dolores recalled. "We couldn't know then how healthy she would be and how far she would go."
Go here to read the rest of this article about this wonderful young lady.http://lubbockonline.com/stories/040209/fea_423987159.shtml
By Joe Gulick AVALANCHE-JOURNAL
Thursday, April 02, 2009Story last updated at 4/2/2009 - 1:31 am
Tim and Dolores Upp recall the shock they received on May 2, 1995 - four months before Natalie was born - when they learned from the results of amniocentesis that their baby had Down syndrome.
"It was awful," Dolores recalled. "We couldn't know then how healthy she would be and how far she would go."
Go here to read the rest of this article about this wonderful young lady.http://lubbockonline.com/stories/040209/fea_423987159.shtml
Wednesday, April 1, 2009
Ruby was a hit.
Ruby was a hit at the therapy seminar on Sunday.She is very social and enjoyed the crowd of people around her.Ruby was on a mat with the therapist and everyone gathered around them.I was a little concerned what Ruby's reaction would be but she started cooing,babbling,and smiling at everyone right away.They were all very impressed with Ruby's strength.Of course everyone thought Ruby was adorable:)The therapist was very good with Ruby and was able to demonstrate for almost an hour before Ruby began to tire.They were all very appreciative of us bringing Ruby,and she received a toy cow that moos and vibrates,her regular Physical therapist told the head PT that this was Ruby's favorite toy at therapy.
I was glad to be able to attend and learned quite a bit that I will be able to use with her.
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