Wednesday, January 28, 2009
Not so sweet
A good friend of mine told me about her grown daughter having dinner with a friend of hers that has a little girl with Ds.When my friends daughter sat down at the table she accidentally kicked the little girl on the leg.The little girl looked at her and hauled off and kicked her back really hard!So much for "Them" always being so sweet:)
I have to share this
I have to share this,I was so excited!
I put Ruby down to look at her gym so I get get a few things done and a few minutes later my 7 yr.old daughter came running to get me and said,"Ruby reached up and grabbed the toy!" I went to look and sure enough she had reached up and grabbed the toy above her head and was swinging it.She let go while I was standing there and reached up and grabbed it again! Of course I took some pics. and here they are. Yeehaw! :)
I can't wait to tell the PT tomorrow at Ruby's appointment.
Tuesday, January 27, 2009
Sunday, January 25, 2009
You Know You Have a Child With Special Needs When
You know you have a child with special needs when...
by Carol AnCel
You compare ER's instead of grocery stores.
You compare your child's oxygen saturations.
You view toys as "therapy".
You don't take a new day for granted.
You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
The clothes your infant wore last fall still fit her this fall.
Everything is an educational opportunity instead of just having plain old fun.
You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
You also don't mind if your child goes through the house tooting a tin whistle.
You fired at least 3 pediatricians and can teach your family doctor a thing or two.
You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else will be there!
Fighting and wrestling with siblings is considered PT.
Speech therapy occurs in the tub with a sibling.
When potty training is complete, you take out a full page public notice in the Washington Post.
When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
You keep a daily growth chart.
You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
You phone all your friends when your child sits up for the first time, at age two.
With a big smile on your face you tell a stranger that your four year old just started walking last week.
Her medical file is several inches thick and growing.
You have a new belief.....that angels live with us on earth.
by Carol AnCel
You compare ER's instead of grocery stores.
You compare your child's oxygen saturations.
You view toys as "therapy".
You don't take a new day for granted.
You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
The clothes your infant wore last fall still fit her this fall.
Everything is an educational opportunity instead of just having plain old fun.
You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
You also don't mind if your child goes through the house tooting a tin whistle.
You fired at least 3 pediatricians and can teach your family doctor a thing or two.
You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else will be there!
Fighting and wrestling with siblings is considered PT.
Speech therapy occurs in the tub with a sibling.
When potty training is complete, you take out a full page public notice in the Washington Post.
When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
You keep a daily growth chart.
You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
You phone all your friends when your child sits up for the first time, at age two.
With a big smile on your face you tell a stranger that your four year old just started walking last week.
Her medical file is several inches thick and growing.
You have a new belief.....that angels live with us on earth.
Friday, January 23, 2009
6 months old
I took Ruby for her 6 month check-up today.She weighs 12 lbs. 5 oz. and she is 24.5 inches long.This puts her in the 50th percentile on both weight and height.Yeah,Ruby! Her Dr. said that her nasal stuffiness is due to her small nasal passages and Ruby will probably need to see an ENT soon to see about getting tubes in her ears.She had an evaluation with her OT and PT yesterday and they couldn't get over how strong she is.I will be taking her for PT once a week and OT once a month.
Wednesday, January 21, 2009
My wedding anniversary
Today is the day that I married a great guy 25 years ago.We have 11 wonderful children together ages 22,18,17,15,14,11,9,7,5,3,and 6 months.Here are some then and now pictures.
Monday, January 19, 2009
Speech therapy
Well,I thought my telling the speech therapist I didn't want to put thickener in Ruby's milk or change her from a slow flow nipple to a fast flow had worked but apparently she wasn't really listening to me or agreeing with me.
At Ruby's appointment last week the ST tried to feed Ruby a bottle with a medium flow nipple and Ruby started choking.Umm, yeah,I had told her that was what happened and that Ruby needs to stay on the slow flow nipple.So,then the ST starts telling me she knows I don't want to use thickener but I'm going to have to at least once or twice a day and for me to not try and feed her any baby food that she would do it this week.
I called the pediatrician and she said I did not have to change Ruby's nipple or put thickener in her milk and she wasn't concerned with Ruby starting baby food any time soon because Ruby is doing just fine with what we are doing.
So,I left a message on Friday with the therapy place that I take Ruby to and they called me back this morning .I told the receptionist I wanted a second opinion and did they have an ST with experience with babies who had Ds .The receptionist said certainly and made me a new appointment with a different ST for this morning.I liked the new ST much better and she agreed with the pediatrician that there was no reason at all to change anything about how I was feeding Ruby and there was no reason for me to bring Ruby to therapy anymore than every 3 weeks while Ruby is still so little as long as I'm doing her face exercises at home everyday.I also found out that the new ST has 10 years experience and the other ST that I was taking Ruby to was only an intern!Anyway,I'm much happier now and glad I stood up for what I thought was right for Ruby and changed her ST.
At Ruby's appointment last week the ST tried to feed Ruby a bottle with a medium flow nipple and Ruby started choking.Umm, yeah,I had told her that was what happened and that Ruby needs to stay on the slow flow nipple.So,then the ST starts telling me she knows I don't want to use thickener but I'm going to have to at least once or twice a day and for me to not try and feed her any baby food that she would do it this week.
I called the pediatrician and she said I did not have to change Ruby's nipple or put thickener in her milk and she wasn't concerned with Ruby starting baby food any time soon because Ruby is doing just fine with what we are doing.
So,I left a message on Friday with the therapy place that I take Ruby to and they called me back this morning .I told the receptionist I wanted a second opinion and did they have an ST with experience with babies who had Ds .The receptionist said certainly and made me a new appointment with a different ST for this morning.I liked the new ST much better and she agreed with the pediatrician that there was no reason at all to change anything about how I was feeding Ruby and there was no reason for me to bring Ruby to therapy anymore than every 3 weeks while Ruby is still so little as long as I'm doing her face exercises at home everyday.I also found out that the new ST has 10 years experience and the other ST that I was taking Ruby to was only an intern!Anyway,I'm much happier now and glad I stood up for what I thought was right for Ruby and changed her ST.
Saturday, January 17, 2009
Prenatal test for autism
Why would they need to have a prenatal test for Autism?This really bothers me!Our society wants to try and do away with anyone who "they" don't think is "normal."
http://www.independent.co.uk/extras/big-question/the-big-question-should-mothers-be-offered-screening-for-autism-and-what-issues-would-it-raise-1332040.html
The Big Question: Should mothers be offered screening for autism, and what issues would it raise?
By Jeremy LauranceTuesday, 13 January 2009
Why are we asking this now?
A pre-natal test for autism moved a step closer yesterday with the announcement by scientists at the University of Cambridge that high levels of the male hormone testosterone in the amniotic fluid surrounding the foetus in the womb may serve as an early warning signal of the condition.
Researchers led by Prof Simon Baron-Cohen, the autism expert, say the discovery raises the possibility that an amniocentesis test similar to that performed for Down's syndrome could be offered to mothers in the future.
Does this raise new ethical issues?
Professor Baron-Cohen seems to think so. He called for an ethical debate so that society could decide where it stood on the issue. "Would [a test] be desirable?," he asked. "What would we lose if children with autistic spectrum disorder were eliminated from the population? There is a test for Down's syndrome and that is legal and parents exercise their right to choose termination. But autism is often linked with talent. It is a different kind of condition."
Is Prof Baron-Cohen right?
No. Even if Professor Baron-Cohen's putative test were to be developed – and all that has been demonstrated so far is an association between testosterone levels in the amniotic fluid and autism – it would not be suitable for screening the whole population of pregnant women.
Amniocentesis involves the insertion of a long needle through the abdomen into the womb through which a sample of the fluid surrounding the foetus is extracted for testing. The procedure is not without risk – it carries a one per cent chance of triggering a miscarriage – and can only be justified where the chances of uncovering a birth defect such as Down's syndrome are similarly high.
So who should the testbe offered to?
A small number of selected mothers judged to be at high risk of having an autistic baby based on family history or previous children already born with autism. The test would only be performed by request – it would not be routine. (The difference with Down's is that there is a simple blood test that can be performed that gives an estimate of the risk of the condition, which can then be confirmed by amniocentesis. There is no blood test – existing or proposed – for autism.)
Might the test lead to the elimination of people with autism?
No, because it would not be used to screen the whole population of pregnant women. Screening for Down's is much more widespread, and in 92 per cent of cases diagnosed couples opt for a termination. But that has not led to the elimination of people with Down's syndrome. Although autism runs in families, suggesting a strong genetic influence, it also occurs spontaneously in families, making it impossible to predict. The benefit of a pre-natal test would be to offer to parents who have already experienced the burden of living with an autistic child a chance to have a second or subsequent child unaffected by the condition. For these families it would be a godsend – offering them a choice.
Why is Prof Baron-Cohen worried?
There is a critical difference between autism and Down's syndrome, he says, which is that in some cases autism is linked with genius – displayed in an obsessive interest in mathematics or engineering or music. Newton and Einstein were almost certainly autistic and the idea that people who were not only valuable members of society but also important contributors to its future might have been eliminated before they were born raises uncomfortable questions. Should medicine offer the opportunity to eliminate a foetus who may turn out to be a person of such importance, he asks?
Is this a valid argument?
Many may find the suggestion that some human beings are more valuable than others, and more worthy of being preserved, distasteful. One commentator yesterday suggested it came close to "Nazi-style eugenics". On this argument, all human beings should be valued equally, and they should never be discarded simply because they are difficult, eccentric, don't confirm to "norms", or cause inconvenience to others. That would be to interfere with the natural diversity of the human race.
What do other experts think?
Professor Joan Morris, director of the National Down Syndrome Cytogenetic Register, which records all Down's births, said there was no ethical distinction between testing for Down's or Spina Bifida (already offered in pregnancy) and testing for autism. "There is no new argument here," she said. Testing for each condition raised the same issues over the ethics of selecting foetuses for termination. All three conditions are life limiting (with the exception of severe spina bifida ) rather than life threatening.
Why does autism provoke such strong views?
The condition exerts a grip on the public imagination. In the social world in which we live, the capacity to read situations and respond appropriately is crucial to successful human interaction. Autism disturbs something that is core to our being human. First identified in 1943, autism has attracted increased interest in the past decade. Some suggest this is because, compared with other disorders such as Down's, people with autism look "normal" and are easier to identify with.
Is autism increasing?
Hard to say. With its defining symptom being "an inability to read social situations", it is not simple to diagnose. In people of high intelligence it may go unrecognised for years – even throughout their lives. As understanding has improved the diagnosis has expanded, and experts now refer to "autistic spectrum disorders" including Asperger's syndrome, to include those less severely affected. People with these milder disorders, sometimes described as "mind blindness", are thought to number 500,000. Of these, 100,000 are estimated to be of low IQ and to need support while the remaining 400,000 are of average or high IQ and are mildly affected. The severest kind of autism is thought to affect about 30,000 people in the UK.
Are there wider issues involving embryo screening?
Yes. Routine testing of pregnant women of the sort discussed here only covers a couple of disorders – Down's and spina bifida – and possibly in the future autism. But for a small number of women – those considering IVF – a whole raft of possibilities is opened up, through pre-implantation genetic screening. The first baby to be born in Britain after being screened for BRCA1, the breast cancer gene, was announced last Friday. It is now possible to screen for almost 200 inherited defects, including Huntingdon's disease and cystic fibrosis, by taking a single cell from the developing embryos, testing it in the laboratory, and then replacing those embryos in the womb that have been shown to be free of the defective gene. Opponents argue that this is another step towards eugenics – the selection and disposal of "imperfect humans.
Is it desirable to screen unborn children for autism?
Yes
*Only those at high risk of autism through their family history would be offered the test
*Autism would not be eliminated because the test would not be offered to every pregnant woman
*It does not raise different ethical issues from those raised by testing for Down's syndrome
No
*It could lead to the elimination of some of the greatest minds capable of shaping our future
*A whole range of individuals who add to the diversity of human nature might be lost
*With a large number of people – 500,000 – mildly affected the impact of a test could be huge
http://www.independent.co.uk/extras/big-question/the-big-question-should-mothers-be-offered-screening-for-autism-and-what-issues-would-it-raise-1332040.html
The Big Question: Should mothers be offered screening for autism, and what issues would it raise?
By Jeremy LauranceTuesday, 13 January 2009
Why are we asking this now?
A pre-natal test for autism moved a step closer yesterday with the announcement by scientists at the University of Cambridge that high levels of the male hormone testosterone in the amniotic fluid surrounding the foetus in the womb may serve as an early warning signal of the condition.
Researchers led by Prof Simon Baron-Cohen, the autism expert, say the discovery raises the possibility that an amniocentesis test similar to that performed for Down's syndrome could be offered to mothers in the future.
Does this raise new ethical issues?
Professor Baron-Cohen seems to think so. He called for an ethical debate so that society could decide where it stood on the issue. "Would [a test] be desirable?," he asked. "What would we lose if children with autistic spectrum disorder were eliminated from the population? There is a test for Down's syndrome and that is legal and parents exercise their right to choose termination. But autism is often linked with talent. It is a different kind of condition."
Is Prof Baron-Cohen right?
No. Even if Professor Baron-Cohen's putative test were to be developed – and all that has been demonstrated so far is an association between testosterone levels in the amniotic fluid and autism – it would not be suitable for screening the whole population of pregnant women.
Amniocentesis involves the insertion of a long needle through the abdomen into the womb through which a sample of the fluid surrounding the foetus is extracted for testing. The procedure is not without risk – it carries a one per cent chance of triggering a miscarriage – and can only be justified where the chances of uncovering a birth defect such as Down's syndrome are similarly high.
So who should the testbe offered to?
A small number of selected mothers judged to be at high risk of having an autistic baby based on family history or previous children already born with autism. The test would only be performed by request – it would not be routine. (The difference with Down's is that there is a simple blood test that can be performed that gives an estimate of the risk of the condition, which can then be confirmed by amniocentesis. There is no blood test – existing or proposed – for autism.)
Might the test lead to the elimination of people with autism?
No, because it would not be used to screen the whole population of pregnant women. Screening for Down's is much more widespread, and in 92 per cent of cases diagnosed couples opt for a termination. But that has not led to the elimination of people with Down's syndrome. Although autism runs in families, suggesting a strong genetic influence, it also occurs spontaneously in families, making it impossible to predict. The benefit of a pre-natal test would be to offer to parents who have already experienced the burden of living with an autistic child a chance to have a second or subsequent child unaffected by the condition. For these families it would be a godsend – offering them a choice.
Why is Prof Baron-Cohen worried?
There is a critical difference between autism and Down's syndrome, he says, which is that in some cases autism is linked with genius – displayed in an obsessive interest in mathematics or engineering or music. Newton and Einstein were almost certainly autistic and the idea that people who were not only valuable members of society but also important contributors to its future might have been eliminated before they were born raises uncomfortable questions. Should medicine offer the opportunity to eliminate a foetus who may turn out to be a person of such importance, he asks?
Is this a valid argument?
Many may find the suggestion that some human beings are more valuable than others, and more worthy of being preserved, distasteful. One commentator yesterday suggested it came close to "Nazi-style eugenics". On this argument, all human beings should be valued equally, and they should never be discarded simply because they are difficult, eccentric, don't confirm to "norms", or cause inconvenience to others. That would be to interfere with the natural diversity of the human race.
What do other experts think?
Professor Joan Morris, director of the National Down Syndrome Cytogenetic Register, which records all Down's births, said there was no ethical distinction between testing for Down's or Spina Bifida (already offered in pregnancy) and testing for autism. "There is no new argument here," she said. Testing for each condition raised the same issues over the ethics of selecting foetuses for termination. All three conditions are life limiting (with the exception of severe spina bifida ) rather than life threatening.
Why does autism provoke such strong views?
The condition exerts a grip on the public imagination. In the social world in which we live, the capacity to read situations and respond appropriately is crucial to successful human interaction. Autism disturbs something that is core to our being human. First identified in 1943, autism has attracted increased interest in the past decade. Some suggest this is because, compared with other disorders such as Down's, people with autism look "normal" and are easier to identify with.
Is autism increasing?
Hard to say. With its defining symptom being "an inability to read social situations", it is not simple to diagnose. In people of high intelligence it may go unrecognised for years – even throughout their lives. As understanding has improved the diagnosis has expanded, and experts now refer to "autistic spectrum disorders" including Asperger's syndrome, to include those less severely affected. People with these milder disorders, sometimes described as "mind blindness", are thought to number 500,000. Of these, 100,000 are estimated to be of low IQ and to need support while the remaining 400,000 are of average or high IQ and are mildly affected. The severest kind of autism is thought to affect about 30,000 people in the UK.
Are there wider issues involving embryo screening?
Yes. Routine testing of pregnant women of the sort discussed here only covers a couple of disorders – Down's and spina bifida – and possibly in the future autism. But for a small number of women – those considering IVF – a whole raft of possibilities is opened up, through pre-implantation genetic screening. The first baby to be born in Britain after being screened for BRCA1, the breast cancer gene, was announced last Friday. It is now possible to screen for almost 200 inherited defects, including Huntingdon's disease and cystic fibrosis, by taking a single cell from the developing embryos, testing it in the laboratory, and then replacing those embryos in the womb that have been shown to be free of the defective gene. Opponents argue that this is another step towards eugenics – the selection and disposal of "imperfect humans.
Is it desirable to screen unborn children for autism?
Yes
*Only those at high risk of autism through their family history would be offered the test
*Autism would not be eliminated because the test would not be offered to every pregnant woman
*It does not raise different ethical issues from those raised by testing for Down's syndrome
No
*It could lead to the elimination of some of the greatest minds capable of shaping our future
*A whole range of individuals who add to the diversity of human nature might be lost
*With a large number of people – 500,000 – mildly affected the impact of a test could be huge
"Down syndrome is Contagious"
Downs syndrome is Contagious
The author's son Eli, her inspiration for the essay.
Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.
Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, Pic lines and the NICU is another side effect.
Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.
The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.
Wendy Holden
Thursday, January 15, 2009
Hard Work
I have still been working with Ruby on reaching up over her body while she is on her back.Today I laid her on my bed on her back and held her favorite toy up over her body.You can tell she wants to grab it so badly.Her body shakes,her eyes get big, and she grabs the front of her shirt with both hands.After a bit I held the toy down close to her hands and she reached out just a little with her right hand and grabbed it.She then lifted her arm straight up over her body and shook the toy back and forth.She did this several times in a row.Each time waiting for me to hold the toy close to her and then grabbing it and extending her arm straight out over her body to shake the toy.She never would use her left hand it just clung to the front of her shirt.I cried tears of joy ,it is exciting to me because I can see how hard she has to work to do this.
Then this evening after I changed her diaper I held the toy up over her but would not put it down close to her chest.I was hoping she would extend her arm out to grab it.Instead she lifted both legs straight up over her and started hitting the toy with her feet! She did this several times in a row! So exciting!
Then this evening after I changed her diaper I held the toy up over her but would not put it down close to her chest.I was hoping she would extend her arm out to grab it.Instead she lifted both legs straight up over her and started hitting the toy with her feet! She did this several times in a row! So exciting!
Tuesday, January 13, 2009
Biggest Loser
I'm joining this contest because I need to lose weight since I've just been sitting and holding Ruby so much.My weight was coming off good after I had Ruby but then I brought her home from the NICU.I have put on 8 lbs. on top of what I already needed to lose.
I think this will motivate me and I love "Biggest Loser".
Monday, January 12, 2009
Ruby's Bumbo Arrived
I asked Lisa at Finnian's Journey about Finn's Bumbo and LovinMomma saw my comment and offered me her Bumbo that she didn't need anymore.Isn't that great? Well, the Bumbo came in the mail today!Here are some pics of Ruby in the Bumbo.Thanks Lovin Momma! I'll get the money order out to you for the shipping.
Delurking Day
Michelle, at the Zoromski Chronicles posted this today so ,I'm putting it on my blog,too.I thought this was really cute!Please,leave me a post to let me know you've been here and what you think of my blog:)
Sunday, January 11, 2009
Bragging on my son :)
JaybirdNWA said...
Sounds like you have a very attentive teenager.
January 10, 2009 11:50 PM
Lovin Mama said...
Those are pretty bumper pads. Isn't it nice to have older kids that pay so much attention to their siblings?
January 11, 2009 7:40 AM
Thank you for these comments :)
I do have pretty great kids and they have been a huge help to me with little Ruby!
I just wanted to brag a little on my son that helped me with my bumper pad dilemma.
He is a great guy and wonderful artist.I have posted here his self portrait and one of my other favorites.I love how bright the girls eyes look.
He is drawing a picture of Ruby for me to put here on her blog.I can't wait for it to be finished!
If you would like to see more of his drawings here is a link:
My son's pics.
Sounds like you have a very attentive teenager.
January 10, 2009 11:50 PM
Lovin Mama said...
Those are pretty bumper pads. Isn't it nice to have older kids that pay so much attention to their siblings?
January 11, 2009 7:40 AM
Thank you for these comments :)
I do have pretty great kids and they have been a huge help to me with little Ruby!
I just wanted to brag a little on my son that helped me with my bumper pad dilemma.
He is a great guy and wonderful artist.I have posted here his self portrait and one of my other favorites.I love how bright the girls eyes look.
He is drawing a picture of Ruby for me to put here on her blog.I can't wait for it to be finished!
If you would like to see more of his drawings here is a link:
My son's pics.
My Favorite "G" Things
Livin for the Love gave me the letter "G"
my 10 Favorite "G" Things :
1. God-We have an Awesome God!
2. Girls-I have 5 of them, they are great!
3. Grady - my son.
4. Godiva chocolate!
5. Grandparents
6. Girlfriends
7. Geddes - Anne,I love her photography
8. Green Grapes
9. Grapefruit - with sugar,YUM
10. Gorillas - they are so wonderful.I love looking at them.I wish they didn't have to be closed up in zoos.
My daughter took this pic. at the zoo this past Thursday.
If you want to play,leave a comment with your favorite G thing and I'll give you a letter.
my 10 Favorite "G" Things :
1. God-We have an Awesome God!
2. Girls-I have 5 of them, they are great!
3. Grady - my son.
4. Godiva chocolate!
5. Grandparents
6. Girlfriends
7. Geddes - Anne,I love her photography
8. Green Grapes
9. Grapefruit - with sugar,YUM
10. Gorillas - they are so wonderful.I love looking at them.I wish they didn't have to be closed up in zoos.
My daughter took this pic. at the zoo this past Thursday.
If you want to play,leave a comment with your favorite G thing and I'll give you a letter.
Fill In The Blankie Giveaway
Don't miss the "Fill In The Blankie Giveaway" at http://www.5minutesforspecialneeds.com/827/827/
These are beautiful blankets!
Fill In The Blankie Giveaway!
I'm going to confess one of my deepest, darkest secrets. ……….
I'm a blankie snob.
Phew. It feels good to get that into the light.
Can you blame me though?Think how important your child's blankie is:
Being one of his biggest sources of comfort, a blankie needs to be the right weight and have just the right 'slip' for tiny fingers to rub while falling asleep.
It needs to be the perfect size for fort building and super hero cape sessions. Not to mention the ever important Princess dress up dates and impromptu wedding veil needs.
And if it is also stylish and hip, well that makes a Momma's heart soar as well.
The perfect blankie can be hard for trached kids to find. Our RT was adamant that any kid with a trach not use blankets made from material that 'shed', such as minkee. That includes handmade quilts tied with yarn. The popular rag quilts too.
This is where, Fill In The Blankie comes in.
Ultra Personalized Baby Blankets. Up to 200 Characters! Way More Than Monogram Or A Name & Birth Date!
(I would show you a picture of Parker and his Fill In The Blankie right here, but he's been sick this week and refuses to give that blankie up for anything. Not a great combo for a photo op.)
I simply can't say enough about the absolutely perfect blanket she created for Parker.
From marketing, to presentation, to the quality of work, quality is of the upmost importance.
And how perfect are the words she custom embroidered on Parker's blankie?
Parker Reed Hodson
Brave Hero
I know the plans I have for you declares the Lord,
plans to give you a future and a hope. - Jer. 29:11
You could create YOUR child's PERFECT Fill In The Blankie too. One that you could WIN.
Come back and tell me which blanket from the many choices offered by Fill In The Blankie would you choose for YOUR blankie. INCLUDING which message you would have embroderied around it's silky edges.
This giveaway is open from January 10 until January 22nd. We'll announce a winner on Saturday, January 23rd.
If you want extra chances to win, you may earn additional entries for the following:
1. Subscribe to our feed2. Write a post and link back to this contest on your blog3. Spread the word to your friends via facebook, twitter, etc.
Simply leave additional comments for each of the extra qualifying steps.
Please be sure to read our Terms and Conditions.
Take it from a giant blankie snob like me, you simply won't be disappointed.
You can also find Tammy and Parker (with his Fill In The Blankie clutched tightly in tow) hanging out at their other blog, Praying For Parker.
Spread the Word!
These are beautiful blankets!
Fill In The Blankie Giveaway!
I'm going to confess one of my deepest, darkest secrets. ……….
I'm a blankie snob.
Phew. It feels good to get that into the light.
Can you blame me though?Think how important your child's blankie is:
Being one of his biggest sources of comfort, a blankie needs to be the right weight and have just the right 'slip' for tiny fingers to rub while falling asleep.
It needs to be the perfect size for fort building and super hero cape sessions. Not to mention the ever important Princess dress up dates and impromptu wedding veil needs.
And if it is also stylish and hip, well that makes a Momma's heart soar as well.
The perfect blankie can be hard for trached kids to find. Our RT was adamant that any kid with a trach not use blankets made from material that 'shed', such as minkee. That includes handmade quilts tied with yarn. The popular rag quilts too.
This is where, Fill In The Blankie comes in.
Ultra Personalized Baby Blankets. Up to 200 Characters! Way More Than Monogram Or A Name & Birth Date!
(I would show you a picture of Parker and his Fill In The Blankie right here, but he's been sick this week and refuses to give that blankie up for anything. Not a great combo for a photo op.)
I simply can't say enough about the absolutely perfect blanket she created for Parker.
From marketing, to presentation, to the quality of work, quality is of the upmost importance.
And how perfect are the words she custom embroidered on Parker's blankie?
Parker Reed Hodson
Brave Hero
I know the plans I have for you declares the Lord,
plans to give you a future and a hope. - Jer. 29:11
You could create YOUR child's PERFECT Fill In The Blankie too. One that you could WIN.
Come back and tell me which blanket from the many choices offered by Fill In The Blankie would you choose for YOUR blankie. INCLUDING which message you would have embroderied around it's silky edges.
This giveaway is open from January 10 until January 22nd. We'll announce a winner on Saturday, January 23rd.
If you want extra chances to win, you may earn additional entries for the following:
1. Subscribe to our feed2. Write a post and link back to this contest on your blog3. Spread the word to your friends via facebook, twitter, etc.
Simply leave additional comments for each of the extra qualifying steps.
Please be sure to read our Terms and Conditions.
Take it from a giant blankie snob like me, you simply won't be disappointed.
You can also find Tammy and Parker (with his Fill In The Blankie clutched tightly in tow) hanging out at their other blog, Praying For Parker.
Spread the Word!
Saturday, January 10, 2009
Bumper pads again
Here are pics. of the bumper pads in Ruby's bed ,before and after.I guess my son was right.Ruby must have felt claustrophobic when I put her in the bed with the pads being so tall on the ends.I fixed them so she can see out and now she is happy to play in her crib! Yeah! 
People First Language
Posting for my friends and family:
From the National Down syndrome Congress
LANGUAGE
GUIDELINES
The correct name of this diagnosis is Down syndrome. There is no apostrophe
(Down). The “s” in syndrome is not capitalized (syndrome).
An individual with Down syndrome is an individual first and foremost. The
emphasis should be on the person, not the disability. A person with Down
syndrome has many other qualities and attributes that can be used to describe
them.
Encourage people to use people-first language. “The person with Down
syndrome”, not “the Down syndrome person.” A person with Down syndrome is
not “a Downs”.
Words can create barriers. Recognize that a child is “a child with Down
syndrome,” or that an adult is “an adult with Down syndrome.” Children with
Down syndrome grow into adults with Down syndrome; they do not remain
eternal children. Adults enjoy activities and companionship with other adults.
It is important to use the correct terminology. A person “has” Down
syndrome, rather than “suffers from,” “is a victim of,” “is diseased with” or
“afflicted by.”
Each person has his/her own unique strengths, capabilities and talents. Try
not to use the clichés that are so common when describing an individual with
Down syndrome. To assume all people have the same characteristics or abilities
is demeaning. Also, it reinforces the stereotype that “all people with Down
syndrome are the same.”
Here are some basic guidelines for using People First Language:
1. Put people first, not their disability
• A “person with a disability”, not a “disabled person”
• A “child with autism”, not an “autistic child”
2. Use emotionally neutral expressions
• A person “with” cerebral palsy, not “afflicted with” cerebral palsy
• An individual who had a stroke, not a stroke “victim”
• A person “has” Down syndrome, not “suffers from” Down syndrome
3. Emphasize abilities, not limitations
• A person “uses a wheelchair”, not “wheelchair-bound”
• A child “receives special education services”, not “in special ed”
4. Adopt preferred language
• A “cognitive disability” or “intellectual disability” is preferred over
“mentally retarded”
•“Typically developing” or “typical” is preferred over “normal”
•“Accessible” parking space or hotel room is preferred over
“handicapped”
From the National Down syndrome Congress
LANGUAGE
GUIDELINES
The correct name of this diagnosis is Down syndrome. There is no apostrophe
(Down). The “s” in syndrome is not capitalized (syndrome).
An individual with Down syndrome is an individual first and foremost. The
emphasis should be on the person, not the disability. A person with Down
syndrome has many other qualities and attributes that can be used to describe
them.
Encourage people to use people-first language. “The person with Down
syndrome”, not “the Down syndrome person.” A person with Down syndrome is
not “a Downs”.
Words can create barriers. Recognize that a child is “a child with Down
syndrome,” or that an adult is “an adult with Down syndrome.” Children with
Down syndrome grow into adults with Down syndrome; they do not remain
eternal children. Adults enjoy activities and companionship with other adults.
It is important to use the correct terminology. A person “has” Down
syndrome, rather than “suffers from,” “is a victim of,” “is diseased with” or
“afflicted by.”
Each person has his/her own unique strengths, capabilities and talents. Try
not to use the clichés that are so common when describing an individual with
Down syndrome. To assume all people have the same characteristics or abilities
is demeaning. Also, it reinforces the stereotype that “all people with Down
syndrome are the same.”
Here are some basic guidelines for using People First Language:
1. Put people first, not their disability
• A “person with a disability”, not a “disabled person”
• A “child with autism”, not an “autistic child”
2. Use emotionally neutral expressions
• A person “with” cerebral palsy, not “afflicted with” cerebral palsy
• An individual who had a stroke, not a stroke “victim”
• A person “has” Down syndrome, not “suffers from” Down syndrome
3. Emphasize abilities, not limitations
• A person “uses a wheelchair”, not “wheelchair-bound”
• A child “receives special education services”, not “in special ed”
4. Adopt preferred language
• A “cognitive disability” or “intellectual disability” is preferred over
“mentally retarded”
•“Typically developing” or “typical” is preferred over “normal”
•“Accessible” parking space or hotel room is preferred over
“handicapped”
Friday, January 9, 2009
Sleep issues
Ruby will hardly sleep any at all during the day unless I'm holding her. When she does sleep she only sleeps for 30 minutes to an hour at a time.If I put her down she wakes right up! I know I probably have just made her rotten! I'm afraid to let her cry very much because it seems like she has a hard time breathing if she gets upset.Especially lately because her nose has been so congested from colds she keeps getting.She does sleep at night from midnight to 8 a.m. ,which is a MUCH better improvement over when she was 2 and 3 months old and would stay awake all night!
Bumper Pads
Ruby has been sleeping in a cradle by my bed since I brought her home from the hospital,she's starting to get too big for it so I have been putting her to bed in her crib in her sisters room(which is extremely hard for me not to have her in the room with me). So I made her some new bumper pads that I thought she would enjoy because she loved the ones I had in her cradle.Well,she is terrified to lay in her crib and play now!My 17 yr old son said maybe she feels claustrophobic since the pads are taller and darker in color than she is used to. I guess I will try making some shorter,lighter color pads and see if that helps.When I put her to bed for the night she is already asleep so of course they aren't scary to her then.
Thursday, January 8, 2009
When will she crawl?
Last night after our Wednesday night church service one of the women in the church walked over to me and asked me if Ruby was crawling yet.I told her no and explained about babies with Ds having weak muscle tone.I told her I was curious to see at what age Ruby will crawl.
I was never one to worry about when my children would crawl or walk or meet any of the other milestones because I knew they would do all of these things when they were ready.I have to admit though that when I was asked this question about Ruby it bothered me a little.I got a funny feeling in the pit of my stomach.I guess I'll just have to be ready for these questions from people and tell them Ruby will do it,whatever it may be, when she's ready.
I was never one to worry about when my children would crawl or walk or meet any of the other milestones because I knew they would do all of these things when they were ready.I have to admit though that when I was asked this question about Ruby it bothered me a little.I got a funny feeling in the pit of my stomach.I guess I'll just have to be ready for these questions from people and tell them Ruby will do it,whatever it may be, when she's ready.
Ruby and her sister
This is Ruby and my 7 yr old daughter.Ruby loves when her sister holds her.She blows raspberries,coos, and grabs at sister's face:)
Wednesday, January 7, 2009
From Sunflowermom
SunFlower Mom posted this and I'm going to post it here so people that see my blog will get to read it.This is so beautiful it brings tears to my eyes.
I love all of my children but there is something different and stronger that I feel for Ruby.
"Always Reaching" written by a father of a child with Down Syndrome:
From the STL DS Newsletterby Matthew’s Dad
Every time I see my son, I reach for him.
It doesn’t matter if he rounds the corner 4 seconds after I have seen him last, or if I am picking him up from school and have not seen him for hours…I reach for him.
I can be 1 foot away or 100 feet away…I reach for him just the same.
I reach for him with my arms, with my eyes, with my heart.
I wonder sometimes what I am reaching for.
I have seen this in other people when they see my son.My family, my friends and perfect strangers. They all reach for him.
I see the same movements, the same gestures, the same need to hold out their hands for him. They want him to come to them, some know him and some don’t. Some call his name and others just motion for him. But they all seem to want him to come.For a moment, you can see his spirit reflected in their faces. I watch the smiles grow across their faces with a fullness that is unavoidable.When he falls into their arms (which is what he does to everyone), I see a momentary peace envelop them, and their eyes close, they pull him in and they experience what I call “The Joy of Matthew”.He gives it to you. He wraps you in it. He wriggles and squirms and mashes the love into you. If you did not know what to expect, you may be surprised and find yourself amazed at the feeling, overwhelmed at the emotion he carries with him.
I am lucky. I get to hold him all the time.And I have been able to think about that feeling and where it comes from and what it may mean. I think Matthew is a window through which we see a pureness of emotion… pure happiness, pure sorrow, pure joy and pure love.Despite what some may think, our special children are closer to God than we are. We see so much in them that we lack. We wish quietly in so many ways that we could be more like them. And when we hold them, if just for a moment, we feel closer to God.That must be why I am always reaching for my son.
That must be why they all reach for him
I love all of my children but there is something different and stronger that I feel for Ruby.
"Always Reaching" written by a father of a child with Down Syndrome:
From the STL DS Newsletterby Matthew’s Dad
Every time I see my son, I reach for him.
It doesn’t matter if he rounds the corner 4 seconds after I have seen him last, or if I am picking him up from school and have not seen him for hours…I reach for him.
I can be 1 foot away or 100 feet away…I reach for him just the same.
I reach for him with my arms, with my eyes, with my heart.
I wonder sometimes what I am reaching for.
I have seen this in other people when they see my son.My family, my friends and perfect strangers. They all reach for him.
I see the same movements, the same gestures, the same need to hold out their hands for him. They want him to come to them, some know him and some don’t. Some call his name and others just motion for him. But they all seem to want him to come.For a moment, you can see his spirit reflected in their faces. I watch the smiles grow across their faces with a fullness that is unavoidable.When he falls into their arms (which is what he does to everyone), I see a momentary peace envelop them, and their eyes close, they pull him in and they experience what I call “The Joy of Matthew”.He gives it to you. He wraps you in it. He wriggles and squirms and mashes the love into you. If you did not know what to expect, you may be surprised and find yourself amazed at the feeling, overwhelmed at the emotion he carries with him.
I am lucky. I get to hold him all the time.And I have been able to think about that feeling and where it comes from and what it may mean. I think Matthew is a window through which we see a pureness of emotion… pure happiness, pure sorrow, pure joy and pure love.Despite what some may think, our special children are closer to God than we are. We see so much in them that we lack. We wish quietly in so many ways that we could be more like them. And when we hold them, if just for a moment, we feel closer to God.That must be why I am always reaching for my son.
That must be why they all reach for him
Tuesday, January 6, 2009
Beauty
Having Ruby has taught me a lesson on what is truly beautiful.I'm ashamed to say that one evening after we had come home from visiting Ruby in the NICU I was very depressed and upset that I would not be bringing home the baby I thought I would have ,the nurses in the NICU had given my smaller children a picture of Ruby they had taken because my little ones couldn't go in to see their baby sister.The picture was pretty bad,it was too close up and poor little Ruby had the oxygen cannula in her nose,which made her nose look even flatter, and her little tongue was sticking out .My little ones were thrilled with the picture though and put it up on the side of our refrigerator.I saw it and thought I don't want an ugly baby! Oh,how very wrong I was! My little Ruby is so beautiful! I can see how much beauty our special children have.Their beautiful eyes,wonderful smiles and their true beauty just emanating from them! I'm so glad to have my Ruby,otherwise I might have missed all the beauty around me. I never realized how many people with Ds live near me.Every time I have gone to the store lately I have seen some beautiful person with Ds.I never saw them there before but now I do and I'm so glad.
Speech Therapy
Well,the visit to the ST today wasn't so bad.I told her I don't want Ruby on milk thickener and she said she understood that ,so we wont be doing that. I tried to explain to her that all of the medium and faster flow bottle nipples say they are for 6 months and up but she said they have regular flow nipples for smaller babies.Well,I went to target after Ruby's session and I bought several packages of different kinds of nipples to take back on Monday for the ST to see.She wants to feed Ruby her bottle at the next session with a faster flow nipple.For some reason she thought Ruby was tiring out with the slow flow nipples but I told her no, not at all that Ruby sucks down her milk pretty quickly. I tried giving Ruby a bottle with the medium flow nipple this evening and she kept having to stop drinking so she could catch her breath. The ST kept trying to look under Ruby's tongue to see if there was any milk there,she said if she's keeping milk under her tongue she could aspirate,but I've never seen Ruby hold milk under her tongue.SIGH
Sunday, January 4, 2009
Article I read
I read an article called Renaissance Angel about a little girl and her love for her baby sister who has Ds.The article is pretty positive but one thing the author said really bothered me.She talked about the baby's love shining for her big sister from behind her mask of Down syndrome.
I was thinking of sending the writer an e-mail and let her know that was a poor choice of words!
I was thinking of sending the writer an e-mail and let her know that was a poor choice of words!
Saturday, January 3, 2009
Road Map To Holland
I bought myself Road Map to Holland for Christmas:)
Wow!What an emotional read! I am just amazed at how similar all of our feelings are about our children with Ds.I have been reading it slowly over the past week.I usually read a book very quickly but I had to digest this one slowly because it was so emotional.I'm glad Jennifer Graf Groneberg wrote this book,it's just wonderful!
Wow!What an emotional read! I am just amazed at how similar all of our feelings are about our children with Ds.I have been reading it slowly over the past week.I usually read a book very quickly but I had to digest this one slowly because it was so emotional.I'm glad Jennifer Graf Groneberg wrote this book,it's just wonderful!
Friday, January 2, 2009
Second opinion
I appreciate the responses to my "Milk" post.I'm not going to put thickener in Ruby's milk.I just don't think there is a need for it.She doesn't have trouble swallowing,she has never aspirated,and she doesn't have reflux problems.Ruby's pediatrician hasn't said anything about Ruby needing milk thickener.I'm supposed to go back to the therapist on Monday.I'm just going to let her know I'm not going to put that in my baby's milk and see how it goes.There are other ST's at the place I take Ruby.I think I may ask to speak to another therapist.It's hard because I think the ST genuinely likes Ruby and she has given me some great exercises for Ruby's mouth.I may feel more comfortable with a more experienced ST though.
I hope everyone's New Year has started out great!
I hope everyone's New Year has started out great!
Thursday, January 1, 2009
Milk
I took Ruby to her ST this past Tuesday and the ST said she wanted me to put thickener in Ruby's milk so she can start using a regular flow nipple instead of a slow flow.I know she's just trying to do what she thinks is best for Ruby but when I got home I cried because the therapist put that disgusting looking gel in my baby's milk(the milk I work so hard to pump for her everyday).I also think I cried because I thought Ruby was doing so wonderfully , she takes 6 to 8 oz. at each feeding,putting on weight,growing longer,stronger and she can roll from her tummy to her back now! The ST also made the mistake of telling me Ruby is her first infant with Ds,that they usually come to her when they are older.The ST is also very,very young.
My husband brought me flowers when he came home that evening because he was sorry I was upset.He's a sweety!
My husband brought me flowers when he came home that evening because he was sorry I was upset.He's a sweety!
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