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Friday, June 24, 2011

Tube weaned, Maybe?!

Katy began to eat by mouth a little over a year ago. She has had a little trouble keeping her weight up during the winter because she just does not digest when she is sick and she is sick a bunch in the winter. She required supplemental tube feedings during the winter, but never backed off on eating much. We started her on a new med about a month ago. The med is an antihistamine that has the side effect of increasing appetite. We had tried it a few years back, with no results. This time it worked. She picked up her eating by about 20% and is now gaining weight again without supplemental tube feedings. Either way it is the same food(we use real food in her tube, not formula), but now she is choosing to eat it. She is still on mostly pureed foods, but she is doing okay with a little texture now. I have pureed spaghetti meat sauce and cut the noodles into small pieces and she didn't gag. She also tolerated food with rice in it the other day without gagging. I am so proud of her, she is a trooper. After 6 years of tube feeding she just decided that she was gonna eat no matter what. She seems to make the most progress when we just step back and relax and let her decide to do it. It seems that every time I stress out over something and push her in therapy it just doesn't happen until I back off. When I back off and take her lead she does it. It was the same with butt scooting, walking, playing on the play ground, eating and using pictures and sign language to communicate. Next step potty training.

Tuesday, April 26, 2011

My beautiful, bug 7 1/2 years old

It's Here!!!

Sean's Vantage Lite arrived today at his speech therapists office and we just happened to have already had an appointment set for this afternoon. He counted to 100 using his device on the drive home and told me about building commercial buildings and asked me to sing quieter. I knew he had nearly intact full language inside his head, he just couldn't make his mouth say it.

Monday, April 18, 2011


We just heard from PRC, the company that makes the device Sean will use for communication. Our insurance has denied the claim, medicaid approved the claim and it is scheduled to ship to Sean's speech therapist in 3 weeks. Yay! We can work on learning to use it over the summer so he can hit the ground running next year with his new device. I am praying he will be able to catch up to his peers in academics within 3 years, social skills will be more tricky. He is a brilliant little boy, who simply can't tell us what he knows. Katy should be getting hers soon too, but no official word on when. The device Sean will get is called the Vantage Lite by PRC. He chose green probably because the one he tested on was green. This machine should serve him well for years to come and can connect to a computer to do e-mail and has bluetooth capability to connect to cell phones and other blue tooth devices.

Saturday, March 26, 2011

It's the Food stupid

The old saying you are what you eat is so very true.

Tuesday, March 22, 2011

gluten is a big problem

I already knew gluten was killing me, but it may be killing you too.

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?

I was diagnosed last week with Fibromyalgia, and while I do agree that the symptoms of that syndrome match up with my own, I am just not sure about this. First of all, other causes have to be ruled out and that just can't be the case for me because I have hypothyroidism and possibly something else going on which can also cause about 80% of my symptoms. My last doctor, an endocrinologist who will remain nameless kept me sick by not giving me enough Armour(Synthroid is forever banned from my body, I will never take it again). She uses a pituitary hormone to judge my thyroid function which really makes no sense, then declares my numbers are normal and my symptoms therefore must be psychological. I know this is not the case I feel sick, not depressed. I have been depressed before and this is just not that. If she would have paid attention to my actual thyroid hormones she would have seen that I am hanging by a thread at the bottom of the range. I know that optimal thyroid function will put your free T3 near the top of the range and your free T4 midrange or higher. My endo also said that I was not anemic, but my labs demonstrate otherwise if you pay attention. My ferritin, which is storage iron was at the bottom of the range and my TIBC was elevated indicating that my body is struggling to keep up. I have nearly used up all my storage iron, that is not normal and can interfere with how my Armour works. The endo did say that I was Vitamin D deficient and told me to take a prescription supplement. I went to a new doctor who gave me the Fibromyalgia diagnosis and is running labs again to see what is going on, but she looked at my labs and said no wonder you feel lousy. I hope she works out and leads me in the right direction. She did take lots of time for me and listened to me and seemed to suggest the labs I thought she should. I go back to her later this week to discuss the labs she ran. I just want to feel better than rotten. I am a little shaken about getting a diagnosis that is a chronic, incurable often debilitating syndrome, but have hope that between a compassionate(she has fibro too) doctor and my own strength, faith and smarts I can find the road back to health.

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 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

Check out this video of these gorgeous kids, several we have met and fell in love with. There are several that look so much like our Katy bug.

Wednesday, May 5, 2010

Funny and not funny at the same time

Tuesday, May 4, 2010

Please vote

The Cornelia deLange Syndrome Foundation needs your help. The foundation has really helped our family in a lot of ways and they need this money to further research not just CdLS, but also other associated things like autism, which is near and dear to my heart. This is the syndrome that best fits Katy and I feel that the parents that I have met through the foundation have given me so much in terms of support, information and hope for the future.

Thursday, April 29, 2010

RECIPE: gfcfsf lasagna

I love lasagna, so when my allergies began to rear their ugly head I was sad that I would not be able to eat lasagna. Well, now I can! I got some Daiya Vegan Cheese Alternative and made up a recipe for it. Note: the abbreviations stand for gluten free, casein free, soy free, in case you were wondering.

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 daddy has been deployed to Afghanistan for a year and he is on his way home. I can't wait to see him. Please pray for his safety in travel. May the hand of the Lord keep him safe and give him the strength to get through the waiting game.

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.

Sunday, March 7, 2010

Two that I will miss

A dear friend and fellow advocate and the granddaughter she loved and cared for so much have gone home to be with the Lord this week. Teresa took on the responsibility of caring for her granddaughter, Skylar when her mother couldn't care for her complex special needs. The two of them were inseparable. The love between them was inspirational, they touched many lives. Skylar loved live to the fullest, despite her many challenges. Teresa loved ALL children and that love was evident from her loving care of the children placed in her care in her many years as a daycare director. She loved my kids and we loved her dearly and will miss them both. Summer camp just won't be the same without them. The two of them served the Lord together and now they will praise him together forever.

Monday, February 15, 2010

Please consider helping out

I have been communicating with the mom of these 2 precious children, C.J. and Cierra. They have an undiagnosed genetic condition that leaves them disabled. There mother is much like me in that she searches for answers and helps her kids any way she can. Her babies needed specialized beds but she couldn't afford them. She lost her job, like many people have faced and is unable to find work right now. She sought out help from organizations that help children with disabilities, but many of them require a specific diagnosis in order to help. Her children are like Katy and still don't have a diagnosis. She finally found an organization willing to help. Please consider donating to help these very special children get the equipment they so desperately need.

Sunday, November 15, 2009

Be thankful to the Lord

This year, as in 2003, our Thanksgiving table will not be complete. My daddy is serving us in Afghanistan. We will think of him and pray for his safe return that day and everyday. Please keep him in your prayers and trust the Lord to bring him home safe. Thank God that we live in a country where people are willing to fight for our freedom. Thank God we have plenty of food and will have a feast on Thanksgiving to celebrate all that God has blessed us with. Never forget where it all comes from.

Watch this video.

Thursday, October 22, 2009

Update on my health

I am not doing well. I started on thyroid meds 2 months ago and they are not helping. I am getting worse. Went to the doc on Tuesday and he said that there is something else going on in addition to the thyroid so we are looking for answers. My heart rate jumped from 80 when laying on my back to 115 when I sat up. That would explain why it feels like my heart will leap from my chest every time I do anything physical like walk up the stairs. He is sending me to the cardiology clinic and has ordered a echocarddiogram and a Holter monitor to wear for 24 hours. He also ordered some labs. He prescribed a beta blocker to try to keep my heart rate more steady and an anti depressant to get me by until he figures out what is going on. I do not like the way the beta blocker is making me feel, so I will be calling him back today. I think this has to do with my adrenal gland in addition to my thyroid. They often will both have problems because one depends on the other for proper function.

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

I was watching Glenn Beck and saw a mom, just like the rest of us who decided to start a website to connect moms to stand up for America called This blog has been rather non-political, but I can't keep silent anymore. I took an oath to protect this country and her constitution with my very life and now it is being torn to shreds by those we elected to represent us. I want to secure a future for my children to live in liberty and the pursuit of happiness. Equal opportunity, not equal possessions. I was brought up to believe that people do not appreciate things that are given to them; they have to work for them in order to fully understand how important they are. Liberty is no different. Our forefathers put their lives on the line to grant us liberty in our constitution, yet we are complacent. This country was founded on the premise that God created us all equal and gave us certain inalienable rights. A portion of the Battle Hymn of the Republic says it all: "He died to make men Holy, let us die to make men free". Americans value the liberty of themselves and others above their own lives. I went to a Tea Party on 9-12 and a veteran of WWII spoke. I will never forget his speech as long as I shall live. He was in charge of the group of American soldiers who discovered and liberated the first known Nazi concentration camp. He said that when he and his men went into the camp the prisoners there were terrified. He screamed out, "We are AMERICANS!!" A cheer roared out from the crowd because they knew they were freed. We are still AMERICANS and we will fight for liberty at home and abroad until the Lord returns for those who have accepted Him.

Friday, September 18, 2009

Katy got approved

We have been trying for years to get some help with Katy's care. There is a program called the Elderly and Disabled Medicaid Waiver program that I signed her up for. The first time they said she didn't qualify, but the second time I talked to a Social Worker who went to work to make it happen. Katy was approved this time. The program allows medically fragile people to remain in their own homes being cared for by their own families by providing help to make it easier on the family. When families can't do it anymore the people are put into expensive institutional care, which ends up costing more and no one is happy with the situation. These programs ensure that people with disabilities have choices for their own residence and daily care needs. I was very hesitant to sign up for this program even though it would be a big help because I would have to have a stranger come into my home and care for my medically fragile child or so I thought. Turns out that I can choose my caregiver if they can get hired by the agency chosen to provide the services. Tara, my sister needed a job so I referred her to be hired and they hired her. She comes each afternoon and helps with keeping Katy's room, bathroom and play room clean as well as changing her bed linens and washing her clothes. She gives her her bath, lays out her clothes for the next day and plays with her. She also provides respite care 4 hours per week. Respite care is a sitter so we can spend time with other children or go out and have fun without worrying. I get to focus on Sean and J.D. and know Katy is well cared for. The social worker called yesterday and asked how it was going. I said, "Well I don't feel like I am so busy I can't breathe anymore."

Thursday, September 17, 2009

What it means to me to be a caregiver

I am a wife and mother. I have 3 children; they are my life. Caregiving is not a job, it is not a mandate, it is a calling. I was an everyday kind of lady before I became a mother. Even when I had my first child I never suspected I would be called a caregiver, a mother yes. I watched that precious baby and knew he was all that mattered anymore. Little did I know what that would really come to mean to me as time passed.

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

Thyroid ultrasound is normal. Started on meds on Wednesday. They are making me nauseated, must take on empty stomach. I always get sick taking meds on an empty stomach. I hope I adjust and the nausea goes away soon, if not I may need to switch to a different brand of meds. Doc tested me for IgA, IgG and IgM, which he said was to check for celiac disease antibodies. Haven't heard results yet.

Saturday, July 25, 2009

A Little worried, pray for me

I went to the doctor last week after fainting. I have been having some weird symptoms that are rather non-specific. The doctor ordered some labs that came back abnormal. My TSH was elevated as well as my triglycerides. My HDL(good cholesterol) was a little low, but my LDL(bad cholesterol) was fine as well as my overall cholesterol. I have been diagnosed with hypothyroidism. From my research the triglycerides being high is because of the thyroid problem. I will be going for a thyroid ultrasound this week to investigate further. No wonder I have felt so bad for so long. Good news is that this condition is very treatable and I should be feeling better very soon. This could be an auto-immune disorder and might lead to further testing for other auto-immune diseases.

Friday, July 17, 2009

Been a while

I have been busy and not well so I have not updated in a while. I have been having some health problems that culiminated in me fainting yesterday so off to the dr. I went. I will be seeing a GI dr and getting some blood work done to try to figure out what is going on. Please pray we can figure this out and get it fixed.

Friday, June 5, 2009

We moved in

This house is so awesome. I wake up in the morning and wonder if I am dreaming. I just can't believe this beautiful house is mine! We are still getting settled in, but we plan to have a big BBQ when we get everything set up. Stay tuned for updates.

Wednesday, May 27, 2009

Moving soon

We heard from our people that we may be closing on the loan for the new house on Friday at 3:00pm. We may be moving in over the weekend! I am so excited, we have waited so long for this. My kids deserve a better home and we are finally getting it. I have been unable to update my blog lately because my back went out 2 weeks ago and I was unable to sit in my computer chair for more than a minute until today. There is much going on right now in the land of IEP(Individualized Education Plans) for the kids. I will try to update later, but it may be after the move. I will find out for sure tomorrow if we will close before the weekend. I will start getting utilities switched and such as soon as I know. We will be borrowing a truck and trailer to make the move quicker, but we have until the 24th to get all our stuff out.

Friday, May 1, 2009

Made me cry

Stumbled across this today and it is just beautiful.

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

We paid off our debt except our mortgage and are sticking to our budget. We are saving lots and lots of money to pay for closing and other costs for our new house. If everyone had a plan for times like these, a layoff wouldn't completely destroy their finances. Dave Ramsey helps people move from fear and anxiety to hope and prosperity even in a recession. Please make plans to attend a Town Hall meeting near you so you can see for yourself that this recession doesn't have to wreak havoc. Hope is a powerful thing and you can have it too.

Thursday, April 9, 2009

Monday, March 30, 2009

We signed the contract on the new house

If everything goes well we will close the first week in May.

Oh my goodness!

Katy will be wearing a hat for a while. Yesterday afternoon Sean took his paper scissors and cut off all of Katy's hair, she is almost bald. I cried, but she didn't seem to care at all. I know one day I will laugh at this, but it is not funny right now.

We Need a New R-word

Tuesday, March 24, 2009

We sign the contract tomorrow

She accepted our counter offer and now we will be signing contracts tomorrow. She is in a lease until July and will try to get out of it, but if she can't we will hold off her closing until the first of June. We have chosen a great house that meets our needs and has a very large wooded lot that will be a blast for the kids.

Monday, March 23, 2009

We have an offer

We had a lady come look at the house last week and yesterday she came back a second time with her dad. She has made an offer, but it is significantly less than we had hoped for so we will counter offer. We also will keep in mind that this is a tough market and will do whatever it takes to meet our financial obligations and still keep the sale negotiation going. We are so excited to see this all moving along. We are hoping she will not back out like the one lady did a few years back. This time she will have to pay earnest money so she will have much to lose if she backs out.

Wednesday, March 4, 2009

Please pray!

A lady came to look at the house yesterday. She is going to look at another house today and get back to us with her decision. She has cash so we will not have to wait on her getting financing. Another person will be looking at the house this afternoon also. Please pray we can finally get this ball rolling.

Monday, March 2, 2009

Here we go again

We are trying to sell our home again. I know it is a crazy time to do that, but it is also a great time to buy a house and we can get a much larger house for our money right now and eventually have some equity to put us in a firmer financial situation. The house we want is here. Now, if we can locate a buyer we will be moving soon. We are not going to make any money on this, but hey we might actually have equity one day, which is not gonna happen in this home.

Thursday, January 15, 2009

Report: Kids are restrained, secluded

Report: Kids are restrained, secluded

http://seattlepi. nwsource. com/national/ 1153ap_restraini ng_kids.html


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

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

The new administration has asked members of the disabilities communities for recommendations for the agenda in this area. Here is the Autistic Self Advocacy Networks response.

K3 is here

Amy and Kenny had their baby the other day on January 2nd. He is a beautiful little man and Amy and Kenny are thrilled to be parents. He weighed in at 9lbs 4 oz and was 20 inches long. Mom and baby are doing well. I don't have any pictures yet, but when I get them I will post. Congratulation Amy and Kenny on the birth of Kenneth Lamar Henderson III.

A Public Service Announcement

I just learned of a public service announcement produced by the Dan Marino Foundation, with support from the Autistic Self Advocacy Network. I really think this is wonderful, please have a look. Our life is touched by autism, not ruined by it!

Wednesday, November 19, 2008

Quit my job

It got to be too much for me. I just couldn't keep all the plates spinning. It started out as only 4-5 hours a day 4-5 days a week, but as time went on it began to change. I was getting a set amount of money for that and as my hours increased my pay remained the same and then actually began to decline. I was making about $2 an hour and I will not work for that! Also I showed up to work one day and they were fighting and trying to draw me into the fight. They started screaming obscenities in front of J.D. and I spoke up and said I would not tolerate that. My last day is Friday and I am relieved and at the same time will miss the kids and the extra money that I was making although towards the end that wasn't much.

Happy Birthday Katy!

Today my tiny girl is 5 years old! I can't believe she is already 5. She is home sick from school today as she was last year. She is doing the mystery fever thing again. Maybe she will not do it as much as last year. I honestly don't know what to do about it and neither do her doctors. She is on antibiotics now because her white blood cell count is up indicating the presence of an infection. I will also put her on some coconut yogurt and probiotics to counter act the negative effects of the antibiotics. She vomits and doesn't digest her food well when she is running a fever so she loses weight and she can't really afford any weight loss as tiny as she is. She is 24.8 lbs only 1 lb more than her baby brother. Everyone is beginning to ask if they are twins because they are almost the same size. She has a follow up with her endocrinologist scheduled for March. He is tracking her growth and at her last appointment he said that she is small statured, but growing at the same rate as other children her age so no reason to be alarmed. Her growth hormone levels were normal when we checked them and her bone age was within normal limits meaning that her bones are growing in a normal way. Delayed or accelerated bone age is a sign of trouble so she is good on that front.

Thursday, November 13, 2008

interesting story

I saw this on Yahoo!News today and thought it was interesting. Maybe the public schools can take notes and learn from this to help these kids. Being understood really goes a long way to teaching someone. If someone feels they have to keep their guard up all the time to avoid sensory overload and miscommunication and bullying they have a real hard time learning. Sean's school is very individual in their approach to the children's needs and focuses on each child's strengths and weaknesses. It has really made a huge difference in his ability to learn. His teacher and aides really seem to understand. Since starting there he is making great progress. This morning he wanted me to blow up a balloon. He gave me a balloon and said, "Momma". I said, "Do you want me to blow up a balloon?" He said, "mm-hmm." I started to blow it up and he said, "Make it big please!" and threw his arms out to indicate big. I was so proud of him I could burst! We actually had a conversation, YAY!

Monday, October 13, 2008

Good news

I got a call this afternoon from a man named Bobby Johnson. I had no earthly idea why a Bobby Johnson from Minnesota would be calling me. He explained that his family was featured in the same episode of Real Families Real Answers that we are and he just had to call me to say how much our story had touched him. He said that the episode had already showed and we didn't even know because it was supposed to be on in December. We looked it up online and watched it and let me tell you it is GOOD. Get out the tissues and have a watch. Go to and go to Tune in now BYU television and click the link. Then go to the listings and go to Saturday October the 4th at 1:30 pm. This is a powerful episode and is almost exactly what we prayed for. The expert they had commenting has a bit different view of autism than I do so please don't think that I agree with her. You do NOT lose your child when they have autism which she called a chronic mental illness, I do not feel it is a mental illness, but rather a different way of being. I hope that other families will be reached by our story. Please pass this along to anyone you know who might need it.

Edited to add: Try this link and go to October 14 at 8:00pm.

Wednesday, October 1, 2008

Dave Ramsey's site

William and I have been doing Financial Peace University at church. This is a class to teach us how to handle our finances in a way that allows us to meet our needs, honor God and build wealth over time. It is really making a difference for us and we are learning so much. Dave Ramsey made millions in the real estate business and lost it all during the housing crunch in the 80's. He fought tooth and nail to come back from financial ruin and now is sharing his insight with others who want to succeed the right way. He, being the financial common sense go to guy, now has on his site his take on what we as a country should do about the so called financial crisis. I have e-mailed all my congressmen about this and I pray that the right thing will be accomplished. If Americans would wake up and read their Bibles they would see that the borrower is slave to the lender and strive to never borrow again. William and I have made a pact to never borrow again with the exception of a mortgage that we can afford and we will work our butts off to pay that off early. Peace comes with knowing that no one can come and take the stuff you worked so hard to earn for your family. The following is his common sense plan to get out of this mess:
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.


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.


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.


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

I got an update from Real Families, Real Answers. The show will start airing this week on ByuTV. Which is Dish Network channel 9403 or DirectTV channel 374. It is also available streaming on the web at

The schedule is as follows:
Tue 9/23 8:00 pm and 9:30 pm Episode 1 Strengthening Families, part 1
Tue 9/30 8:00 pm and 9:30 pm Episode 2 Strengthening Families, part 2
Tue 10/7 8:00 pm and 9:30 pm Episode 3 Protecting Family Time
Tue 10/14 8:00 pm and 9:30 pm Episode 4 Managing Our Emotions
Tue 10/21 8:00 pm and 9:30 pm Episode 5 Keeping a Marriage Strong, part 1
Tue 10/28 9:30 pm Episode 6 Keeping a Marriage Strong, part 2
Tue 11/4 8:00 pm and 9:30 pm Episode 7 Effective Parenting
Tue 11/11 8: 00 pm and 9:30 pm Episode 8 Parenting Teens
Tue 11/18 8:00 pm and 9:30 pm Episode 9 Family Finances
Tue 11/25 9:30 pm Episode 10 Strengthening Blended Families
Tue 12/2 8:00 pm and 9:30 pm Episode 11 Successful Single Parenting
Tue 12/9 8:00 pm and 9:30 pm Episode 12 Avoiding and Overcoming Pornography
Tue 12/16 8:00 pm and 9:30 pm Episode 13 Family Crucibles

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 the promotional video.

Friday, September 12, 2008

The new civil rights movement

God doesn't make mistakes. EVERY person has a purpose whether or not they know it or live up to it. I am so excited at the prospect of one of us(Special mommies) making it to the White house. I pray that God's will be done for this election and for all the critical issues the country is facing at this time. Please take the time to check out this article about Trig Palin, Sarah Palin's 5th child. I was going to vote for McCain before he announced his choice for VP, but now I am actually excited about the prospect of voting now. I will not agree on all the issues with the McCain/Palin camp, but this is one I can honestly say I support because I am also a "Bulldog with lipstick." I have fought tooth and nail for a better life for my kids and I hope that the administration of the country regardless of outcome of the election will join that fight. Those who face challenges deserve a life that is cherished, honored and respected. They deserve to have free will and dignity, not to be incarcerated because the Government funds institutions but not community supports.

Monday, September 1, 2008

I just got busier

I got a part time job to make ends meet. I am taking care of 3 little kids in the afternoons at their house. I saw an ad in the Buy Sell Bulletin asking for someone to watch children in their home and called. I interviewed and she chose me as soon as she talked to me. The children have some minor special needs and she was very cautious about a sitter for them. She said I was a perfect fit for them because of my experience as a mommy to special kiddos. I started last Monday. I am working from 2-5:30 on most days. The 2 younger kids are 1 year old preemie twins and the older is a 5 year old kindergartner. He gets off the bus at around 4:00. I take J.D. with me and then William comes to get him when he gets off work. If he was to work overtime I would pack up the babies and go get Sean and Katy off the bus and head back over well before it is time to get the other little boy off the bus. I prepare for dinner ahead of time so I can just throw something together when I get home and so far everything is running pretty smoothly.

Friday, August 29, 2008

Please pray

Gustav is gearing up to hit the gulf coast. The people who live there are still putting their lives together from Katrina. Pray for wisdom, strength and direction for them and pray for a weakened storm. My daddy got called up in the National Guard to go to New Orleans to be on standby, please pray for him as well. He is finally doing what the intended purpose of the Guard is. Also please pray that we will not have major flooding and tornadoes from this storm here. I will probably plan to be away from home during that time as we live in a mobile home and I am terrified of this sort of thing anyway.

Wednesday, August 20, 2008

Monday, August 18, 2008

Sean is talking!

Sean began saying a few words back in December and stayed there for awhile. Then over the summer he began to say a few more words and now he is coming up with something new every day. Today he got off the bus and walked over to the DVD player, picked up his "Big Bird Gets Lost" DVD and handed it to me and said,"Big Bird". So of course he got to watch Big Bird! I am so glad he got into camp this summer because he had a great summer and I think that is why he is trying so hard to speak.

Monday, July 28, 2008

Unidagnosed syndromes you tube channel

We are a part of a non profit organization called SWAN USA(Syndromes Without a Name, USA). They have a you tube channel and there is a slide show there that explains what they are for and shows the kids. Katy is on there. I know these kids from talking to their moms for years and we have grieved together as we have lost some over the years. That is the most tragic thing when you talk about undiagnosed kids, they face terrible challenges and the doctors don't know how to help. Please consider shopping online through I-give and designating funds for SWAN USA. This organization is on a crusade to help researchers and doctors help these kids by finding out what is wrong. They also try to educate parents and caregivers on where to go for help.

Friday, July 18, 2008

Update from Real Families Real Answers

I got an e-mail from Blair Treu about the documentary that we filmed for last August.
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 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 October 7, 2008 Chapman/Cahan

4. Managing Our Emotions October 14, 2008 Giddins/Candland

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 November 4, 2008 Rowe/Howard

8. Parenting Teens November 11, 2008 Parsons/Brooks-Nichter/Willis

9. Family Finances November 18, 2008 Hughes/Beverly

10. Strengthening Blended Families November 25, 2008 Webb/Hill-Mullford

11. Successful Single Parenting December 2, 2008 Newell/Dico

12. Family Crucibles December 9, 2008 Johnson/Bussey

13. Avoiding/Pornography December 16, 2008 Hughes

Additional Air Dates (General Conference)

Protecting Family Time October 5, 2008 Chapman/Cahan

Managing Our Emotions October 7, 2008 Giddins/Candland

There are additional broadcast dates for KBYUTV, BYUTV-HD, through this same time period. BYUTV International airings will start world wide in January 09. The series will also be available on other PBS affiliated stations across the United States in 2009. DVD sets are anticipated to become available in early 2009. After the series has been delivered for distribution, I will TRY to get a DVD to each of you who have participated in the series as a special thank you.

You can watch byutv online at their webiste here.

Sunday, July 13, 2008

Special Needs ministry

William and I have felt for some time that God is calling us to start a special needs ministry in our area. We are gathering information and praying for guidance on where to go with this. We know that families with disabled members usually don't make it and the divorce rate in this group is 80% or more. We also know that 80% of families with an individual affected by disability are unchurched. I really think that if we as churches do something about that then the divorce rate would most certainly improve in this "unreached people group." Missionaries travel the world to reach "unreached people groups" and we have a huge one living in our very own communities. So why are these families unchurched? From my own experience the churches are simply not meeting their most basic needs for accessibility and understanding. In short they are not meeting them where they are and not even trying to find out how they can help. So what does a family affected with disability need in a church? Well that all depends on the nature of the disability and the needs and personality of every member of that family. This is why no one gets anywhere, how do you prepare for the unknown? The answer lies in scripture. Paul said he was all things to all men so that they could know the love of Christ Jesus. And in Matthew Jesus said that in order to enter the kingdom of Heaven we must become like the little children and those who cause these little ones to stumble might as well have a millstone on their neck and be tossed into the ocean. Now that I think of it, that is exactly how I felt when I was not being met where I was at church, I felt like I was drowning in despair. If the very people who are the temple of the living God are not sharing that love with these families where can they go? The world out there is certainly not going to sustain these most blessed families. God's strength is made perfect in weakness and a person with a disability illustrates God's perfect grace in everyday life. Check out this link on how one church is making a difference in this area.

Monday, July 7, 2008

Check this out!

During the conference there was a young man running around getting pictures of all the children. He was so friendly and truly saw the beauty in those kids. At the concluding breakfast he presented the photos he took and told us about himself and the company he founded. He is a fashion photographer who grew weary of being told what was beautiful and disgusted at how fickle the concept of beauty seemed to be in that industry. He had a wild idea to try to change that and decided to take photos of people the fashion world might reject, but he saw their beauty shine through and wanted to share that beauty with the world. Katy is in his slide show on his website here.

Monday, June 30, 2008

The Conference was awesome!

We met so many families facing many of the same challenges that we face on a day to day basis. I met some people who I am sure will be life long friends. It was so nice to go to a place where no one looks at my kids like they are strange and ask rude questions. Everyone was so nice and I could see so much of Katy in those kids. They had her unstoppable joy and spice for life and many shared gait and mannerisms with her.

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!

We are going to attend the CdLS National Conference in Chicago. When I heard about the conference I was racking my brain trying to find a way to go. We are broke and haven't been able to go on vacation since having children. We really need to connect with other families facing similar challenges and Katy needs to see experts who can finally give us an answer to the question of whether or not Katy has CdLS. The CdLS Foundation has a scholarship program to pay for the tuition for first time attendees so I applied for that not even knowing how we were going to pay the rest. I prayed and prayed and God kept speaking to me in our quiet time that He would provide because He has a purpose for us at the conference. I then learned that one of the speakers is the author of a book called The Unexpected Journey: Special Paths With Special Children and is going to speak on that topic which fits right in with the ministry that God is calling us to start in our area. I prayed "wow, you really know how to confirm something! Now show me how to pay for it." About a week later I stumbled across something amazing. There is a fund to help people with developmental disabilities in Alabama attend conferences. We will be reimbursed for almost all of our cost! We will fly out tomorrow afternoon from Birmingham to O'Hare and return late Sunday night. We will be staying here. It is by far the nicest place we have ever stayed in. We will also try to make time to go to the Beach on Lake Michigan. Katy will be having a consult with the medical advisory board and we hope we will finally get a diagnosis. Please pray for safe travel and opportunities to learn about God's purpose for our ministry and our family.

Wednesday, May 28, 2008

I feel very strongly about this

Short bus jokes and use of that horrible word need to be done away with. Check out this site.

Friday, May 23, 2008

Willam is gone for a whole week

He left early this morning. He is going Roxanna, IL with a group of short term missionaries called Carpenters for Christ. They will be helping a church build a new facility so they can meet the needs of their community. He has wanted to go for many years, but this year God worked it all out for him to go. He is so worried about me with the kids with no help, but I know I will be fine. I have plenty of people to turn to if I need help.

Tuesday, May 20, 2008

My photo shoot

When I won the radio contest I won a spa package and after all that pampering I looked great so William got out the camera and we went up to the top of Vestavia Hills and these are some of the pictures he took of me.

A new milestone?

J.D. is beginning to use the potty some. YAY! If he continues on his trend maybe Katy will follow like she did with walking.

Friday, April 18, 2008

Wow What a day!

Crazy me, I entered a contest on the only radio station we listen to and wouldn't ya know I won! Our radio station is WDJC in Birmingham and they are celebrating 40 years in ministry. They had a contest where you e-mail in how the radio station has made a difference in your life. Here is what I wrote:


We are the Bussey family from Anniston. WDJC has made such a difference
in our lives. My daughter was born in November of 2003 with multiple
birth defects that are part of an undiagnosed genetic syndrome. She was
transferred from our local hospital to Children's hospital when she was
just a few hours old. That very long drive to Children's after spending
a whole night with her so far away was made bearable by listening to the
familiar, uplifting music we had grown to love over the years. To our
pleasant surprise the NICU nurses had WDJC on in the unit all the time
so we could get the message we needed and be comforted by the familiar
music we loved amongst the unfamiliar chaos of the unit. They were also
playing WDJC on the radio at the Ronald McDonald House in the common
areas and other families were just as blessed as we were to constantly
hear the message that no matter how bad things got, God was there and He
loved them. The blessings we have been granted by the Lord have been
transmitted through your station for years. Through all of the follow
up appts and long drives to Birmingham you have granted us strength and
brought our spirits up through your message of hope and love in Christ.
We are stronger because of the ministry of your station many times over.

Another thing I would like to mention is that Mark Harris is also very
important to our family and has given us hope for the future with our
children. We have 2 special needs children as well as one child that is
typically developing. The song, "Find Your Wings" that he performed has
really touched us and changed the way we view parenting these very
special children and raising them "in the way they should go". I have
for a long time wanted to tell him how important that song has been to
our family and we pray that we will have the opportunity to tell him
face to face at the WDJC Birthday party.

William and Jennifer Bussey and children

The party was awesome and I could listen to Mark Harris all day long!