Busiest Mommy in America
I am arguably the busiest mommy in America. I have a wonderful husband, William that I married in 1998. I have 3 beautiful kids. Sean, my oldest was born in 2002 and has autism. My second, Katy was born in 2003 and was born with what we think is Cornelia deLange Syndrome J.D. is my baby and he was born in 2006 and seems to be right on target with development and is quite the mommy lover. My life is full and blessed beyond measure.
Friday, June 24, 2011
Tube weaned, Maybe?!
Tuesday, April 26, 2011
It's Here!!!
Monday, April 18, 2011
Yay!
Saturday, March 26, 2011
It's the Food stupid
http://civileats.com/2011/03/25/adhd-it%E2%80%99s-the-food-stupid/
Tuesday, March 22, 2011
gluten is a big problem
http://drhyman.com/gluten-what-you-dont-know-might-kill-you-11/?utm_source=Publicaster&utm_medium=email&utm_campaign=drhyman%20newsletter%20issue%20#17&utm_term=Get+the+story
I have a thyroid problem that may be autoimmune in nature and gluten intolerance that may be celiac disease. I had all the classic celiac symptoms except weight loss, I had weight gain instead. Sean is definitely gluten intolerant, but his symptoms are a little more subtle than mine.
Tuesday, February 22, 2011
So I have a diagnosis for me, really?
Tuesday, May 11, 2010
I don't need studies to prove what I already know
I did not write this, just saw it and copied and pasted.
The results of a 2-year study indicate that use of a gluten- and casein-free diet may help ameliorate some of the symptoms of autism spectrum conditions for some children.
In conjunction with the Center for Autisme in Denmark and the Universities of Oslo and Stavanger in Norway, ESPA Research, a not-for-profit subsidiary of ESPA (Education and Services for People with Autism) along with the University of Sunderland, announce the publication of results for a 2-year research project looking at the effectiveness of a gluten and casein-free diet for children with autism. Group results of the Scandinavian - British (ScanBrit) randomised controlled dietary trial appear in the April 2010 edition of the journal Nutritional Neuroscience.
Autism is a life-long condition present in an estimated 1% of the population. It primarily affects the way a person communicates and deals with their social environment and people around them. Autism is poorly understood with currently no genetic or biological test to aid diagnosis. Whilst no universal intervention strategy has been found to manage the more complicated symptoms of autism, some parents have reported that changes to their child’s diet did, in some cases, reduce some of the symptoms associated with autism.
“For many years parents of children with autism have been experimenting with changes to their child’s diet” said Dr Paul Whiteley, from ESPA Research. “Some have reported a reduction of certain symptoms whilst a gluten and casein-free diet is being followed. In this investigation, we tested experimentally the effectiveness of such a diet using some of the gold-standard assessment instruments currently available in autism research. We found significant group changes to some autistic symptoms whilst participants were on diet compared to no diet in place”.
In the study, 72 children with autism were randomly allocated to a diet or no-diet group. Following a battery of baseline tests and measurements, children allocated to the diet group followed the intervention with support from a study nutritionist. Whereas traditional studies of this type normally just compare intervention against non-intervention, the ScanBrit study also used an adaptive design setting specific targets of improvement to be met by children on diet in order to indicate any success of the intervention.
“Our results suggest that some children with autism may benefit from this type of intervention” Whiteley said. He cautions however that “dietary changes did not work for everyone and demonstrates the clear need for dietetic and medical support if such a restrictive regime is to be attempted”. The next stage of the research will try and predict those best- and non-responders to the diet on the basis of behavioural patterns and the analysis of urine samples taken over the course of intervention.
Urinary analysis will be conducted on a state-of-the- art Q-TOF Mass Spectrometer recently acquired by ESPA Research.
*Gluten-Free, Casein-Free Diet Not Effective? – A News Analysis:*
(Another interesting follow-up to a recent discussion on our board-)
By Todd Gary
One of my pet peeves is bad information, especially in the form of bad or even irresponsible news reporting. In a day and age when massive proliferation of information is so easy, it becomes ever more important to be critical “consumers” of information. The May 4, 2010, article (blurbed and linked in SAR of May 5, 2010),( http://www.consumer affairs.com/ news04/2010/ 05/gluten_ autism.html ) touting that the “Gluten-Autism Link Doesn’t Hold Up,” is a perfect example, and well worth unpacking in a day and age when few people read past the headlines. Setting aside the headline, the open paragraph of the article stakes the claim: “A gluten-free, casein-free diet is not an effective treatment for autism spectrum disorder (ASD), according to a review of more than a dozen major studies investigating the approach.” Note that the author is not merely saying the GF/CF diet is of uncertain benefit, or that there aren’t studies establishing benefit or lack of benefit. No, this writer makes a definite and affirmative claim: the diet is “not an effective treatment.” Ok, so we should expect valid scientific data or evidence establishing lack of efficacy. As with any critical analysis of information, we start with the source. Who is reporting this? Is it a reputable source? Are its reporters held to ethical reporting standards? Are there axes to grind? Following the SAR link we find – wait, it’s not the NY Times, or the LA Times – it’s… Consumer Reports?? Hmm, we aren’t talking about the latest model Pria or toaster ovens – we’re talking about autism treatment. Perhaps a bit far afield from their usual expertise, but let’s give this usually reputable source (of electronics reviews) some benefit of doubt. But wait – there’s another glaring concern: Where’s the author? Scroll up, scroll down – no by-line anywhere at all. Now that’s a bad sign! It means no accountability at all. For all we know, it could have been written by the laundry detergent correspondent’s eighth grade daughter for a class homework assignment. So much for the source of the article; what about the source of the content? The second paragraph introduces the Venerable Authority, quoted extensively throughout the article, and the source of the “study” at issue: “Austin Mulloy, a doctoral student in the Department of Special Education at the University of Texas at Austin.” Wait – it’s not a doctor? Merely a doctoral student? But let’s look even closer. Despite the implication, “doctoral student” does not mean “medical student”: Mr. Mulloy is in the “Special Education” department at the University of Texas. He’s a grad student studying special education. There’s no medical background apparent here whatsoever -- in either the news source, the author of the article, or the author of the study! That’s mighty odd when the subject is the treatment of autism! On to the content… The study was performed by Mr. Mulloy and “a team of scientists from the Meadows Center Autism Spectrum Disorders Institute.” (What kind of scientists? Not reported. What is the Meadows Center? Not reported.) And here is a key fact in the third paragraph: this was not primary research, but a review of “15 published, major scientific studies” performed by others. So what did they find? Did these “15 published, major scientific studies” disprove any benefit from the diet, as promised? Ah – not so fast! Paragraphs 4, 5 and 6 are all background on the diet. Not until paragraph 7 do we find the meat in this cocoanut: “The research team reported that a number of gross methodological flaws invalidate studies that show support for using the diet as an ASD treatment. "So, the claim staked by the article in its opening paragraph is proved false. We did not find a single primary, peer-reviewed study disproving benefit of the diet. Rather, we find a group of folks throwing barbs at “15 published major scientific studies” performed by others, that actually showed benefit. But perhaps describing this review accurately just wouldn’t be as “good” news. So, in the interests of making “good news” we created “bad information." The rest of the article is almost anti-climactic, once its false premise and methods are revealed. Paragraph 8 tells us that a number of documented phenomena other than diet “can explain” the outcomes of the 15 studies. Not “do explain” – just “can explain.” Hardly overwhelming disproof of benefit. (The article doesn't even bother to mention what these other "documented phenomena" are.) Paragraph 9 is beaut, though, and typical of the “scare the parents” methodology of the mainstream media establishment. Here the author sub-headlines a special paragraph: “Caution on Diet Changes.” Why should we have such caution? Well, because our graduate student Mr. Mulloy urges so.Because he says that “a variety of adverse consequences are known to be associated with a gluten- and casein-free diet….” Really? Wow! Wish I knew what those are. Go figure! Our son has been on it for years, we’ve been reading about it for years, we’re well-educated on autism spectrum disorders and their treatments, and all this time we must simply have missed hearing about all (or even any!) of these “adverse consequences” that are “known” to be associated with the diet. But this brings up a great forensic tool for unpacking bad reporting: the passive voice detector. Passive voice hides identity, which is very useful if you want to hide motive or a lack of information. Mr. Mulloy states that this “variety of adverse consequences are known.” Known? What does that mean? Known by whom? Does Mr. Mulloy mean to say these adverse consequences are reported and documented? If so, why doesn’t he say so? If he said that, of course, we might want to know what the consequences are, who researched and reported them. And if that information doesn’t exist, or is simply inconvenient, it is much simpler to resort to the passive voice. Anytime you hear the passive voice (“It has been reported that…” for example) let your “bad information” alerts sound off. The final three paragraphs of the article are more fluff -- background on ASD, all irrelevant, except a final note of falsity that flavors the whole meal in reverse (if you catch my drift): “While the exact cause of autism remains elusive, some possibilities have been ruled out, including some routine childhood vaccines.” With this mindless nod to the reporting community’s marching orders on vaccines, we come full circle to the false premise of this article. Lack of evidence does not disprove or “rule out” anything. So, Dear autism readers everywhere – Caveat Emptor! Get past the headlines, use the ol' noggin, and demand accountability and good information. Our kids health depends on it.
Sunday, May 9, 2010
May is CdLS Awareness month
http://www.facebook.com/video/video.php?v=10150187048905029&comments=
Wednesday, May 5, 2010
Tuesday, May 4, 2010
Please vote
Thursday, April 29, 2010
RECIPE: gfcfsf lasagna
GFCFSF Lasagna
1 12oz pkg of Tinkyada Brown Rice Lasagna
1 12oz can of tomato paste
20oz of water
1 lb of lean ground beef, browned
1/2 lb of sausage, browned(I buy some from a local farm,watch ingredients)
Italian seasonings(I like Mrs. Dash blends, also watch ingredients)
Sea Salt
4 eggs or egg replacer equivalent
1 1/2 cups of Daiya vegan cheese alternative, divided
Preheat oven to 375*F. Boil lasagna until flexible, but still firm. Meanwhile, mix tomato paste and water in sauce pan until smooth, add in seasonings and salt, then add meat and simmer. Mix eggs or egg replacer and 2/3 of the cheese in a bowl, add some seasonings. In a large casserole or cake pan, layer tomato mixture, noodles, egg mixture, repeat. Bake for 35 minutes, then add remaining cheese and bake 10 more minutes.
Wednesday, April 28, 2010
Random stuff
My health is beginning to improve. I stopped taking Synthroid which was making me far worse with scary side effects like heart palpitations, severe depression, shortness of breath and exercise intolerance. I started taking Armour thyroid almost 2 months ago and I am on a very small dose and probably need to adjust my dose upward when I see the doc on May 13, but I am feeling much better. I am still having hair loss, no appetite, dry skin and hair, constipation and fatigue, but all of these are much less than they were and I am losing weight with little effort, yay! I am definitely better on the Armour than I was on Synthroid. I will never take that junk again. I do think that my adrenal glands are probably a little worn out from my high stress life, so I ordered a saliva test to find out how they are doing. If they are worn out I can take supplements to help them out. I am taking lots of supplements already because apparently having gluten intolerance has depleted my body of some essential nutrients as indicated by my lab results. I have been gluten free for 8 months now and it has made a HUGE difference. No gluten for me forever! That stuff is evil when you are intolerant or have celiac disease. For the record I do not know if I have celiac or some other form of gluten intolerance because I refuse to go back on gluten to run the tests for celiac disease. It just ain't worth it. The pain, the bathroom dwelling, the inability to go anywhere for fear of not making it to the bathroom in time, the fatigue, and the severe arthritic pain, all this really does a number on your life.
I am getting pretty good at cooking gluten free, milk free and soy free. We also avoid the things everyone should avoid like hydrogenated oils, artificial sweeteners, artificial colors, artificial flavors, high fructose corn syrup, and nitrates. These things are all really bad for you and should be severely limited in all people's diets. I can make just about anything with safe ingredients and though they don't all taste exactly like the original, many are so similar the difference is not detected by those who don't know and others are just good in their own right.
In addition to avoiding all of those things, I have decided to lower my carb intake to 100g per day. The average person consumes around 300g per day, which is okay for some, but disastrous for others. This typical American diet can cause some people to become metabolically unstable, leading to wild blood sugar fluctuations and eventually diabetes. Diabetes runs in my family, I am overweight, my cholesterol is out of whack because of my thyroid, so I wanted to help control my metabolic responses a bit better. I do not wish to do Atkins diet or the like because I feel they are too restrictive and are not safe long term because of the ketosis that occurs. I simply want to help control blood sugars, a eat a clean, fresh, whole foods diet. Since I am already gluten free it really isn't that hard to limit carbs. I just focus on the meats, veggies and high fiber fruits, almond milk, nuts and avoid rice and potatoes. I also take supplements to fill in the gaps, it's really no biggie. Until I go out to eat that is, it is much harder to eat gluten, milk and soy free and low carb, but it can be done. Fresh green salads with eggs or meats are a great out to eat option as well as grilled meats and steamed veggies. Only drink water, all natural Crystal Light, or almond milk. I actually consume way less than 100g per day most days, but I allow that much so that I don't feel deprived, plus I also allow one day a week to cheat. I have been doing this for 3 1/2 weeks and now I have lost 9 lbs so far. Not bad if I do say so myself. I only need to lose about 15 more pounds then I can add in a few more carbs to level out my weight.
Wednesday, April 7, 2010
Collin Raye's granddaughter passed away
I posted a while back about Collin Raye writing a song about his granddaughter who was suffering with an undiagnosed neurological disorder. She has now gone on to be with the Lord.
Thursday, March 25, 2010
Sunday, March 7, 2010
Two that I will miss
Monday, February 15, 2010
Please consider helping out
Monday, December 21, 2009
Sunday, November 15, 2009
Be thankful to the Lord
Watch this video.
Thursday, October 22, 2009
Update on my health
Do You See Me?
The last little boy on this video has CdLS, which is the syndrome that fits Katy best. This video made me cry. These babies are perfect in God's sight.
Friday, October 2, 2009
As a mom-The sisterhood of the mommy patriots
Friday, September 18, 2009
Katy got approved
Thursday, September 17, 2009
What it means to me to be a caregiver
Then I had a beautiful baby girl and as soon as she was born it became apparent that God had called me to be a caregiver. She was born with disabilities. She was whisked away to a hospital 2 hours away and all I could do was cry and ask God, "Why my precious baby?"
I soon joined her in the NICU at Children's Hospital. I knew she was in good hands, but I was her mommy and she needed me. When I saw her tiny little body in that isolette with tubes and wires everywhere, I wondered how I was going to "mother" her in this environment. I was there every minute they would allow me there. She had test after test after test. They still, 6 years later, don't know why she faces the challenges she does. It felt as though she was not mine at times. I felt so removed from her, she seemed so fragile, but I LOVED her with a mother bear kind of love.
She finally came home from the hospital about a month later and we settled in. Things did not get easier, I worried about her every minute of the day. We had so little information about her condition, just fragments of a still unsolved puzzle. We really didn't know if she would survive. She absolutely detested feedings and would scream and refuse and as a result did not grow well. She turned blue a time or two and scared the life out of me. My husband and I were so exhausted from the night feedings and the stress of a special needs baby. We couldn't reach out for help because no one seemed to understand how to help. That first year is quite the blur. My beautiful daughter had 76 doctor appointments in a city 2 hours away from home that first year. Our finances were terrible and our debt was soaring. My husband and I made a commitment to keep the connection that had created these beautiful children. We actually grew stronger through it, although it didn't feel like it at the time.
Then out of the blue it seemed, I began to notice that my oldest son was not progressing as he should. I searched frantically for answers and came to the conclusion that he had autism. I asked his doctor about it and was told that after all we had been through that he was probably just having a hard time adjusting to life with a special needs sibling. I knew in my heart he was wrong and self referred to the early intervention program for both children. We took my daughter to the neurologist who was following her for a bleed in the brain during the neonatal period and the doctor asked if we had my son evaluated for autism yet. I knew then that I had been right all along. That doctor diagnosed my son and we got him the help he really needed.
My daughter's feeding completely dominated the whole household all the time. Then I went to her pediatrician's office for her 9 month check up in tears. I calmly explained that my baby needed a feeding tube right away. I had given it my best shot, but I just couldn't force her kicking and screaming anymore just to get enough food into her to keep her hydrated. She had stopped growing and I just didn't know what else to do. The day that she got her feeding tube was the first time that she smiled at me. She was 10 months old and had smiled at her daddy and her granny, but not me. She smiled at me that day and I will tell you that was the very moment when I just went head over heals for her. It was as if she said, "thank you mommy, this is just what I needed."
We went on for a long time running from doctor to doctor, tube feeding after tube feeding. She was so developmentally delayed and was falling farther and farther behind. I was sad for her, but also loved her just the way she was. There is nothing on earth that is more joyous than this little girl's laugh. She has fought hard for every milestone and is happy through it all.
I had my 3rd child(a son) when my daughter was almost three years old. She was in a wheelchair, completely dependent. My oldest son(4 years old at the time) was making progress, but still quite the challenge to care for. I was so busy I didn't have time to think or breathe, but my joy was complete. My youngest son is so compassionate, so giving. My youngest son taught his big sister how to walk and his big brother his first words since he stopped talking at 18 months old.
My children, all three of them, have taught me lessons that I would never have learned if I had not earned the title caregiver. Those who never earn the title cannot fully understand the joy, the pain, the laughter, the strength. This is the hardest work one can imagine, but also brings joy beyond measure. To see one smile from a little girl who has faced so much in her life is something beyond explanation. To see a little boy who tries so hard to accomplish things that seem to come natural to the rest of the world is a pride that transcends circumstances.
During those first few months of my daughter's life I prayed and prayed for God to heal her. My husband was praying the same prayers each day. We both over the course of time came to the same conclusion that it wasn't my daughter who needed healing. She was exactly who God had planned her to be. It was me that needed healing. It is often said that "God will never give you more than you can handle." Before I became a caregiver I believed that. Now I have been led into the realization that He does in fact give us more than we can handle so that we can learn to give it back to Him. We have to get past our own ideals and get into the fact that it really isn't about who we are, but how we love. If I had to choose I would choose this life all over again. It is all worth it to see these precious children learn and grow.
Thursday, August 6, 2009
Started treatment
Saturday, July 25, 2009
A Little worried, pray for me
Friday, July 17, 2009
Been a while
Friday, June 5, 2009
We moved in
Wednesday, May 27, 2009
Moving soon
Friday, May 1, 2009
Friday, April 17, 2009
pictures of the inside of the new house
Today we had an opportunity to go over to the new house and go through some items the sellers left behind. They told us to keep whatever we want and they will dispose of the rest. We got some pretty nice things out of the pile and the rest was personal items of theirs or junk. It was so nice to go over and spend some time there. We got a chance to do a little cleaning and it felt good to take care of this beautiful home for the first time. I noted some things that I would like to do when we move in and took measurements for the windows, refrigerator space, etc. We got our good faith estimate today and we already have saved enough to pay for the cash required to close. We got a locked in rate of 5%. Above are some pictures of the inside of the house.
Wednesday, April 15, 2009
We have chosen not to participate in the recession
Thursday, April 9, 2009
We got approved
Monday, March 30, 2009
We signed the contract on the new house
Oh my goodness!
Tuesday, March 24, 2009
We sign the contract tomorrow
Monday, March 23, 2009
We have an offer
Wednesday, March 4, 2009
Please pray!
Monday, March 2, 2009
Here we go again
Sunday, February 1, 2009
Monday, January 19, 2009
Thursday, January 15, 2009
Report: Kids are restrained, secluded
http://seattlepi. nwsource. com/national/ 1153ap_restraini ng_kids.html
THE ASSOCIATED PRESS
WASHINGTON -- Schoolchildren across the U.S. have been injured or killed
when they were restrained or secluded, a disability rights group says. A
House committee announced a hearing on the issue.
The National Disability Rights Network, in a report Tuesday, identified
cases across the country in which children, many of them with disabilities,
were traumatized, injured or killed at school.
For example, 15-year-old Michigan boy with autism died while being
restrained by four school employees, the report said.
In another case, a 13-year-old Georgia boy hanged himself in a locked
concrete seclusion room after pleading with teachers not to isolate him for
hours at a time.
The group said its report "is clearly just the tip of the iceberg" because
the government doesn't have any system of collecting data about these
abuses.
Rep. George Miller, D-Calif., chairman of the House Education and Labor
Committee, said he would schedule a hearing on the issue.
"This report raises serious questions about the treatment of schoolchildren,
the qualifications and training of staff, and what actions have been taken
to address these unconscionable practices," Miller said. "No child should be
at risk or in danger while at school, no matter what the circumstances. "
--
Tuesday, January 6, 2009
Recommendations for the new administration
K3 is here
A Public Service Announcement
Friday, December 5, 2008
Wednesday, November 19, 2008
Quit my job
Happy Birthday Katy!
Thursday, November 13, 2008
interesting story
Monday, October 13, 2008
Good news
Edited to add: Try this link and go to October 14 at 8:00pm.
Wednesday, October 1, 2008
Dave Ramsey's site
Years of bad decisions and stupid mistakes have created an
economic nightmare in this country, but $700 billion in
new debt is not the answer. As a tax-paying American
citizen, I will not support any congressperson who votes
to implement such a policy. Instead, I submit the
following three steps:
Common Sense Plan.
I. INSURANCE
A. Insure the subprime bonds/mortgages with an underlying
FHA-type insurance. Government-insured and backed loans
would have an instant market all over the world,creating
immediate and needed liquidity.
B. In order for a company to accept the government-backed
insurance, they must do two things:
1. Rewrite any mortgage that is more than three months
delinquent to a 6% fixed-rate mortgage.
a. Roll all back payments with no late fees or legal
costs into the balance. This brings homeowners
current and allows them a chance to keep their homes.
b. Cancel all prepayment penalties to encourage
refinancing or the sale of the property to pay off
the bad loan. In the event of foreclosure or short
sale, the borrower will not be held liable for any
deficit balance. FHA does this now, and that
encourages mortgage companies to go the extra mile
while working with the borrower—again limiting
foreclosures and ruined lives.
2. Cancel ALL golden parachutes of EXISTING and FUTURE
CEOs and executive team members as long as the company
holds these government-insured bonds/mortgages. This
keeps underperforming executives from being paid when
they don’t do their jobs.
C. This backstop will cost less than $50 billion—a small
fraction of the current proposal.
II. MARK TO MARKET
A. Remove mark to market accounting rules for two years
on only subprime Tier III bonds/mortgages. This keeps
companies from being forced to artificially mark down
bonds/mortgages below the value of the underlying
mortgages and real estate.
B. This move creates patience in the market and has an
immediate stabilizing effect on failing and ailing
banks—and it costs the taxpayer nothing.
III. CAPITAL GAINS TAX
A. Remove the capital gains tax completely. Investors
will flood the real estate and stock market in search
of tax-free profits, creating tremendous—and immediate—
liquidity in the markets. Again, this costs the
taxpayer nothing.
B. This move will be seen as a lightning rod politically
because many will say it is helping the rich. The truth
is the rich will benefit, but it will be their money
that stimulates the economy. This will enable all
Americans to have more stable jobs and retirement
investments that go up instead of down. This is
not a time for envy, and it’s not a time for politics.
It’s time for all of us, as Americans, to stand up,
speak out, and fix this mess.
Sunday, September 21, 2008
It's show time
The schedule is as follows:
We are featured in episode 13, Family Crucibles. Please try to watch this show and please pray that families will find the support and information they need to be successful in this crazy world. Here http://www.youtube.com/watch?v=kU4MTl4FN84is the promotional video.
Friday, September 12, 2008
The new civil rights movement
Monday, September 1, 2008
I just got busier
Friday, August 29, 2008
Please pray
Wednesday, August 20, 2008
Monday, August 18, 2008
Sean is talking!
Monday, July 28, 2008
Unidagnosed syndromes you tube channel
Friday, July 18, 2008
Update from Real Families Real Answers
Here is the letter I got.
To all Families and Scholars who participated in the Real Families, Real Answers documentary series;
Thank you so very much! I’m sorry for the impersonal nature of this letter, but I want to get the word out quickly. Here’s an update on the progress of the series.
We completed principal photography on the Series in December of 2007, and we’ve been busy in the edit rooms ever since. You’re effort and patience with us in this process is about to pay off.
Promotional advertisements for the Series are now playing several times a day on both BYUTV and KBYUTV. If you tune in, you may see yourself or members of your family! If you don’t see yourself, don’t worry, the promo is only 5 minutes long and there was no way to represent all families that participated in all 13 episodes. Tune in beginning September 23 at 7:pm, as we begin to air Real Families, Real Answers in its entirety, and keep an eye out for your family (see table below). Please check local listings or www.byutv.org for more accurate updated information as the broadcast dates draw near. (Scholars, I’m sorry you are not listed in the table below, but I believe most of you are aware of the shows in which you were involved, so just check the shows by topic)
RFRA Series Show Order Air Dates Guest Families
1. Strengthening Families Pt. 1 September 23, 2008 Wiginton/Bennett/Cousin
2. Strengthening Families Pt. 2 September 30, 2008 Wiginton/Bennett/Cousin
3. Protecting Family Time
4. Managing Our Emotions
5. Keeping a Marriage Strong Pt. 1 October 21, 2008 Skolaski/Jackson
6. Keeping a Marriage Strong Pt. 2 October 28, 2008 Chase/Frandsen
7. Effective Parenting
8. Parenting Teens
9. Family Finances
10. Strengthening Blended Families
11. Successful Single Parenting
12. Family Crucibles
13. Avoiding/Pornography
Additional Air Dates (General Conference)
Protecting Family Time
Managing Our Emotions
You can watch byutv online at their webiste here.
Sunday, July 13, 2008
Special Needs ministry
Monday, July 7, 2008
Check this out!
Monday, June 30, 2008
The Conference was awesome!
We saw 2 geneticist and a GI dr at the conference who offered some great suggestions for Katy's care and will contact Katy's drs about recommendations. We did not get a definitive diagnosis though and will have to wait longer for answers. The geneticists said that she definitely has some features of CdLS, but also has some features that are inconsistent with CdLS, so they can't say for sure until we rule out some other syndromes with similar features. The other syndromes suggested are Rubenstein-Taybi, Floating Harbor, and Seckel Syndrome.
Rubenstein-Taybi is very rare and I really do not feel that Katy has this. There are many characteristics that just don't fit Katy. Floating Harbor does have some familiar characteristics, but also some that just don't fit. Seckel Syndrome is a type of primordial dwarfism and is also very rare. She does look a little like these kids, but they have thin, fine hair and she has lots of thick hair. They are also much smaller than Katy. These syndromes will be suggested to Katy's geneticist and we will test for them. If we get negative test results they suggested that CdLS should be a good diagnosis for her. We are scheduled to see Katy's geneticist in September, but after the Foundation contacts her she might want to see Katy sooner.
Tuesday, June 24, 2008
Chicago Here we come!
Wednesday, May 28, 2008
I feel very strongly about this
http://stopsayingretard.wordpress.com/