Ugh….not again

Posted by: Sarah Trost in cancer, health No Comments »

A little background, with links to the blog posts in the highlighted phrases. On Sept 2, 2009, just a few months after our son died, Paul had a colonoscopy looking for the cause of his mysterious ongoing symptoms he had for about 10 months.  Although the biopsy came back negative, we were pretty sure it was cancer.  On Sept 16 I announced my pregnancy as well as updated the results of Paul’s surgery. In October I began to miscarry.

There is a serious lack of info about what those months were like during chemo.  Perhaps because I didn’t have the physical or emotional energy to write about it. On November 14 I posted about my ectopic twin and emergency delivery.  Chemo was hell, and that post gave a little information about the affects of chemo.  It was three hours a day, three days a week, and he came home with the pump hooked up.  It was hard for him to sleep.  Eating helped his nausea but he was very picky about what he would eat because a lot of stuff tasted terrible.  Cold things were painful, he needed warmed water/tea and couldn’t eat fresh fruits and veggies because of their temperature.  After 7  months he was joyfully finished and scans showed no cancer.  He was declared in remission in 2011 I believe.

It is now April, 2012.  Paul has had 7 months or so of ongoing and increasing issues in the area where they removed the tumor.  He had a PET scan which confirmed that the tumor is there and growing.  The chemo didn’t work.  They have not done a biopsy but it doesn’t take a biopsy to know that he has cancer. The prognosis is not good.  They don’t seem to know what to do. He seems depressed, angry, upset, and hopeless.  I think those are all very normal feelings.  I just don’t know what to say to make it better, because really NOTHING will make it better.

And how am I feeling?  I wrote this to a bunch of doulas.  I’m sorry about the type, I’m having trouble enlarging it.

“I just want to take a moment right here to scream and stomp and yell and throw virtual breakables and let them shatter all over the virtual floor. I have had ENOUGH! This is ridiculous. Many have experienced rape (some multiple times) and many have had the loss of a child (or children) and some have had birth trauma (perhaps more then once) and perhaps PTSD, infertility, and many have lost a parent or grandparent to cancer and some have had a spouse with cancer (perhaps several times) but SERIOUSLY? Come on. Does one person really have to go through ALL of it? “This will make you a stronger person” “you will have more empathy” blah blah blah. I’m already strong, I have plenty of empathy, I don’t need MORE crap to make me a better person. ENOUGH ALREADY.”

 

pretty as a picture

Posted by: Sarah Trost in Aspies, autism/asperger's, Being Mommy, Family No Comments »

My girls always make the funniest faces (unintentionally) in their
photographs. I’ve tried having them practice in front of a mirror and it just
doesn’t work. So now this is what I do:

I tell them to close their eyes. When their face looks calm and relaxed I tell
them to think of (an ice cream sunday, their favorite video game, whatever you
can think of that will bring a smile to their faces.) When I see that natural
smile I get ready to snap the picture and then I tell them to open their eyes.
Perfect picture almost every time!

an aspie son interviews mom

Posted by: Sarah Trost in Aspies, autism/asperger's, Being Mommy, Family, Homeschooling No Comments »

why it’s not the same thing

Posted by: Sarah Trost in autism/asperger's, Family, health, Today in the News No Comments »

A good friend of mine suggested that it’s a good thing for AS/ASD to be not so widely diagnosed because the extremely wide spread diagnosis of ADD/ADHD and other disorders and over medication has become an overwhelming concern and problem to many (I have read that most children in foster care are taking at least three psychiatric medications for PRIMARILY ADD.)

I completely agree that this is a problem that needs to be addressed and a solution found. However, AS/ASD is more likely to be under-diagnosed, and typically unmediated. Here is the reply I sent to her.

AS and ASD have no common medications prescribed because there is nothing recommended specifically for AS/ASD. Children and adults on the autism spectrum may be given something for anxiety, OCD, PTSD, insomnia, ect but those are independent of the autism diagnosis, considered to be comorbid syndromes. Medical insurance does not typically pay for anything related to AS/ASD such as speech therapy, occupational therapy, or behavioral therapy because it’s not considered a curable disorder. However, with a diagnosis, children and adults may qualify for special services through the schools and colleges (such as speech and OT, ABA or other therapies) and accommodations (like a quiet place to test with extra time, a special aid, ect.) They may also qualify for Medicaid and SSI, which helps the parents as well as the children with therapies and medical bills. Most on the spectrum are unable to support themselves, so SSI is very helpful for that. ASDs come with all kinds of health issues as it is strongly linked to auto immune disorders. The body begins to attack itself. Candida, food sensitivities ect can be very costly. As it is a neurological disorder, epilepsy and other disorders may also affect the person. A child or adult with autism who gets SSI will get also Medicaid. There’s also respite care for parents to get a babysitter to help care for their child with special needs while they get a much needed break.

There are DAN! doctors (Defeat Autism Now) who understand nutrition and all the ins and outs of ASDs and while there aren’t very many of them, there are a lot of people helped by them. Early intervention and nutritional help ect is out there for those who get a diagnosis. Also, without a diagnosis those on the autism spectrum are very badly treated because they are just ‘difficult’ or ‘morons’ or ‘lazy’ instead of people with a disability who may need extra help. Imagine if a child is never diagnosed as deaf. What would his parents think of him? How would others around him treat him? How would he feel? He would certainly never be taught sign language, so he would be unable to express himself. It also leaves parents helpless to know what to do with their child. In the course of ASDs, a diagnosis is definitely very helpful. In fact, if we didn’t know that Kailey and I have AS our lives would be much worse now. I wouldn’t even have them on a gluten free diet and it’s very possible that Bethany and Taryn wouldn’t be talking. I may have continued vaccinating Kaitlyn, and who knows what she would be like now. But with the new diagnostic criteria, I don’t think we’d be diagnosed. We don’t actually have the official diagnoses as although we could have received it easily enough I chose not to because I thought that could come later if need be. Now, with the new diagnostic criteria, that might not be possible.

An excellent blog on a child with AS that was not diagnosed until later is here (if you can view it through mamapedia, if not let me know and I can copy it.) http://www.mamapedia.com/voices/bright-child-with-asperger-tick-s I’m sure there are plenty of responses of similar stories there.

Change is not always good

Posted by: Sarah Trost in Aspies, health No Comments »

http://news.yahoo.com/s/ap/20100210/ap_on_he_me/us_med_mental_disorders

Changes proposed in how psychiatrists diagnose

WASHINGTON – Don’t say “mental retardation” — the new term is “intellectual disability.” No more diagnoses of Asperger’s syndrome — call it a mild version of autism instead. And while “behavioral addictions” will be new to doctors’ dictionaries, “Internet addiction” didn’t make the cut.

The American Psychiatric Association is proposing major changes Wednesday to its diagnostic bible, the manual that doctors, insurers and scientists use in deciding what’s officially a mental disorder and what symptoms to treat. In a new twist, it is seeking feedback via the Internet from both psychiatrists and the general public about whether the changes will be helpful before finalizing them.

The manual suggests some new diagnoses. Gambling so far is the lone identified behavioral addiction, but in the new category of learning disabilities are problems with both reading and math. Also new is binge eating, distinct from bulimia because the binge eaters don’t purge.

Sure to generate debate, the draft also proposes diagnosing people as being at high risk of developing some serious mental disorders — such as dementia or schizophrenia — based on early symptoms, even though there’s no way to know who will worsen into full-blown illness. It’s a category the psychiatrist group’s own leaders say must be used with caution, as scientists don’t yet have treatments to lower that risk but also don’t want to miss people on the cusp of needing care.

Another change: The draft sets scales to estimate both adults and teens most at risk of suicide, stressing that suicide occurs with numerous mental illnesses, not just depression.

But overall the manual’s biggest changes eliminate diagnoses that it contends are essentially subtypes of broader illnesses — and urge doctors to concentrate more on the severity of their patients’ symptoms. Thus the draft sets “autism spectrum disorders” as the diagnosis that encompasses a full range of autistic brain conditions — from mild social impairment to more severe autism’s lack of eye contact, repetitive behavior and poor communication — instead of differentiating between the terms autism, Asperger’s or “pervasive developmental disorder” as doctors do today.

The psychiatric group expects that overarching change could actually lower the numbers of people thought to suffer from mental disorders.

“Is someone really a patient, or just meets some criteria like trouble sleeping?” APA President Dr. Alan Schatzberg, a Stanford University psychiatry professor, told The Associated Press. “It’s really important for us as a field to try not to overdiagnose.”

Psychiatry has been accused of overdiagnosis in recent years as prescriptions for antidepressants, stimulants and other medications have soared. So the update of this manual called the DSM-5 — the Diagnostic and Statistical Manual of Mental Disorders, fifth edition — has been anxiously awaited. It’s the first update since 1994, and brain research during that time period has soared. That work is key to give scientists new insight into mental disorders with underlying causes that often are a mystery and that cannot be diagnosed with, say, a blood test or X-ray.

“The field is still trying to organize valid diagnostic categories. It’s honest to re-look at what the science says and doesn’t say periodically,” said Ken Duckworth, medical director for the National Alliance for the Mentally Ill, which was gearing up to evaluate the draft.

The draft manual, posted at http://www.DSM5.org, is up for public debate through April, and it’s expected to be lively. Among the autism community especially, terminology is considered key to describing a set of poorly understood conditions. People with Asperger’s syndrome, for instance, tend to function poorly socially but be high-achieving academically and verbally, while verbal problems are often a feature of other forms of autism.

“It’s really important to recognize that diagnostic labels very much can be a part of one’s identity,” said Geri Dawson of the advocacy group Autism Speaks, which plans to take no stand on the autism revisions. “People will have an emotional reaction to this.”

Liane Holliday Willey, an author of books about Asperger’s who also has the condition, said in an e-mail that school autism services often are geared to help lower-functioning children.

“I cannot fathom how anyone could even imagine they are one and the same,” she wrote. “If I had put my daughter who has a high IQ and solid verbal skills in the autism program, her self-esteem, intelligence and academic progress would have shut down.”

Terminology also reflects cultural sensitivities. Most patient-advocacy groups already have adopted the term “intellectual disability” in place of “mental retardation.” Just this month, the White House chief of staff, Rahm Emanuel, drew criticism from former GOP vice presidential nominee Sarah Palin and others for using the word “retarded” to describe some activists whose tactics he questioned. He later apologized.

___

AP Medical Writer Lindsey Tanner in Chicago contributed to this report.

Act Now!!

Posted by: Sarah Trost in Aspies, Being Mommy, health, Today in the News No Comments »

As many of you may know, they have been working on updating the DSM-IV, and had talked of putting Asperger Syndrome and PDD under the ASD umbrella diagnosis. Well, that had a good possibility of helping more aspies and those diagnosed with PDD, although perhaps confusing the lay people who really don’t know much about ASDs.

They are definitely doing such, but I’m now afraid that the change is actually going to hurt those with AS and PDD and perhaps even those who have classic ASD tremendously. The reason is because the diagnostic criteria is possibly being narrowed so much that the number of those diagnosed in the future will be much fewer and those currently diagnosed may loose their diagnosis. Fewer diagnosed means fewer will receive help that they may desperately need in school, with health and psychiatric care, and other services provided through private and state programs.

In the DSM-IV the diagnostic criteria for AS currently says

Asperger’s Disorder

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(2) failure to develop peer relationships appropriate to developmental level

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

(4) lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

(4) persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

The new proposed revision/criteria for DSM-V will say

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction: (and what determines that something IS a ‘marked deficit?” People can be very flexible and learn, even those on the autism spectrum.)

b. Lack of social reciprocity; (so, if you can take turns in a game or conversation, you aren’t autistic?)

c. Failure to develop and maintain peer relationships appropriate to developmental level (does that mean that if you have a friend you aren’t autistic?)

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

b. Excessive adherence to routines and ritualized patterns of behavior

c. Restricted, fixated interests
3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Condensing the criteria may make things simpler, but it certainly excludes many who are on the spectrum. This is horrible! Something should be done! And something can be done, they are asking for comments on the proposals. I know of no other time when health care professionals have actually asked for the public to give such input, so I’m hoping that people will do so in the droves.

If you have the time and inclination, please do say that while including AS and PDD under ASDs, limiting the diagnostic criteria so severely will seriously harm those on the spectrum who may be undiagnosed and possibly even those who have already been diagnosed and limit the amount of help they will receive. You will need to register but it was simple and then you can comment here

“Raise your hand for chocolate milk”

Posted by: Sarah Trost in health No Comments »

Although I’m allergic to milk, I do loooove chocolate milk. But the fact is that unless you make it yourself, it’s really bad for you. Sugar is very bad for your health, and many of them have high fructose corn syrup, which is even worse! Well, there is a new campaign sweeping the nations most popular online mommy groups, in hand magazines ect. Pediatricians, dietitians and celebrities are getting involved in the possible ban of chocolate milk from schools and presenting the argument that if we don’t flavor the milk, the children won’t drink it and will have poorer nutrician.

Of course, the fact that you are adding an additional 70 calories per 236 ml and the fact that they often are sweetened with HFCS (doubling the sugar content in the process) is something completely embraced as an acceptable risk due to the ‘health benefits’ of chocolate milk.

The ‘science’ behind it states that we should add sugar to nutrient rich foods such as milk and cereal to make them more palatable as well as other skewed facts and ideas. This is atrocious! It’s like putting on the Cocoa Krispies box that it improves immunity (they actually did that too!!) There are plenty of people out there uncomfortable with the health claims made in sly marketing techniques.

So why are they doing this? Perhaps it has something to do with milk sales going down if they ban chocolate milk in the schools. Some think that it’s a conspiracy to make Americans unhealthy so they can make more money in the healthcare system or for population control. I don’t know…maybe it’s because people are typically stupid, especially in large groups. The fact is that this campaign needs to be crushed! It gives the very wrong impression that chocolate milk is actually good for children, when there’s already serious doubts wither regularly processed nonorganic white milk is suitable for consumption! Surely adding chocolate (often artificial) and sugar (often high fructose corn syrup) is NOT a good thing. True, children who drink flavored milk will drink more of it, but is this beneficial? I don’t think so. Those nutrients can be consumed by eating fruits and vegetables and cheese and yogurt rather then encouraging children to guzzle chocolate milk because it is ‘good’ for them. Of course, children don’t want to eat things that are good for them, which is why chocolate milk is the ‘easy way’ for them to be ‘healthy.’ Really, if there was an easy way to be healthy, our nation would have a low BMI and good muscle tone.

My kids love fruits and veggies, but they were raised with them. Processed foods and…chocolate milk…are a special treat. I think that if children grow up with a good diet you don’t have to buy sugared up cereals and chocolate milk to get them to eat well, and at the risk of repeating myself yet again, sugar has been proven to be bad for you! How can adding something bad for you to mechanically processed ‘nutrients’ be considered good for you??!!

CDC website: H1N1 mild?! A dud, claims chief medical officer/Oversold, claims Harvard study

Posted by: Sarah Trost in health No Comments »

Straight from the government, yes, the same one who declared the ‘swine flu’ a pandemic and declared a national state of emergency!  ” Most people with 2009 H1N1 have had mild illness and have not needed medical care or antiviral drugs and the same is true of seasonal flu.”

Yes, H1N1 has been problematic for those with other underlying conditions, but the same is true for the regular flu.

Another article of interest “It’s really not causing — and is not going to cause and nowhere has caused — significant levels of illness or death,” said Dr. Richard Schabas, Ontario’s former chief medical officer of health.  “But governments moved ahead regardless. They ramped up their response, spent a huge amount of money on vaccines and other things (Canada spent $1.5 billion on their vaccine campaign.)  The huge investment that’s been put into planning for what has ultimately turned out to be, from a pandemic perspective, a dud.”

ABC news said “A new analysis, using H1N1 deaths in the United States in the spring and projecting likely outcomes for this fall, shows that a typical — or possibly even milder then average flu season should have been expected.

The finding begs the question: Has swine flu been oversold?

The new study, done by researchers at Harvard University and the Medical Research Council Biostatistics Unit in the U.K., says swine flu cases in the spring indicated a flu season that might be, at worst, slightly worse than normal.

“It would have been great to have that back in June,” said Philip Alcabes, an associate professor in the program in urban public health at Hunter College’s School of Health Sciences. “There would have been one more bit of evidence behind my assertion six months ago” that people were overreacting to H1N1.”

Mercola says “in Britain, health authorities’ original worst-case scenario — which said as many as 65,000 could die from H1N1 — has twice been revised down and the prediction is now for around 1,000 deaths, way below the average annual toll of 4,000 to 8,000 deaths from seasonal winter flu.”

And “Now it looks as though the H1N1 scare of 2009 will go down as one of the biggest government and pharmaceutical scams ever, renewing a healthy, and necessary, skepticism about government fear-mongering, the swine flu vaccine and the dubious dealings behind the implementation of worldwide mass-vaccination programs.”

From the most clinical health professional to the conspiracy theorists alike, all can agree that this most certainly was NOT the flu pandemic of 2009.

The Flu Pandemic

Copyright 1999 Topmast Productions and the Flying Fish Sailors

Chorus: It was the Flu pandemic
And it swept the whole world wide
It caught soldiers and civilians
And they died, died, died!
Whether they’re lying in the trenches
Or lying in their beds
Twenty million of them got it
And they’re dead, dead, dead!

There was a soldier on the battleground in 1917
He turned there to his buddy with his face a ghastly green
He said “We made it both through Passchendaele, the Somme, and Flanders too
But now my number’s up my lad for I’ve gone and caught the flu”

chorus

Well a nurse was in the hospital when Tommy was brought in
When he sneezed she caught a face full that was flying in the wind
She wrote a letter home to England to tell them of her plight
But the letter never got there ’cause the postman too had died

chorus

From the meadow-lands of Somerset and o’er the bounding main
To the shores of old Americay they sung the same refrain
Mothers, fathers, uncles and aunts as well as the odd nephew
Brothers and sisters and bosses and lovers were all got by the flu

chorus

Well a farmer out in China watched his family dropping down
And a businessman in Cairo hit the street without a sound
And an eager little Bolshevik in old Sevastopol couldn’t keep up his grinnin’ at Lenin as Comrade Virus took its toll

yummy

Posted by: Sarah Trost in health No Comments »

the joys of soda

Now, before I get a bunch of emails, I know that some sodas do not have HFCS.  In fact, there’s a popular line that has Splenda, although some believe that Splenda is worse then sugar.  When I have a hankering for soda I try to drink something with sugar or a new stevia sweetened, carbonated, flavored green tea.  Ultimately, I just try to stay away from it alltogether.  That’s a great ‘New Years Resolution.”  One soda a month?  None at all?   Carbonation dehydrates and has a strong link to tooth decay, so limiting all carbonated beverages is a good idea.

Birthing From Within

Posted by: Sarah Trost in Being Mommy, book reviews, health, stillbirth/pregnancy loss 1 Comment »

When I was pregnant with Benjamin I borrowed our local ICAN library’s “Birthing From Within.” It looked interesting, although I had never heard of it before. Actually, natural birth books were entirely new to me as I didn’t know anyone who was pregnant or had children when I got pregnant the first time and then went into labor at 26 weeks, again at 28 weeks, again at 30 weeks, and had a c-section at 32 weeks for fetal decels (and of course was railroaded into more c-sections later.)

For those of you who don’t know, it’s not just a book about natural birthing. It is more so a book about discovering one’s self, your inner most thoughts and feelings about birth. I found that largely, it was a therapeutic book on acknowledging one’s fears and pain from previous deliveries or other traumatic experiences and healing in those areas, so one can embrace a new pregnancy and delivery with fresh excitement and peace. A journey untainted by previous experiences, only aided by them.

I certainly found the book a healing BEGINNING. I was still planning my VBA4C and read so many other books as well and was really doing well emotionally/mentally. But then tragedy struck and I was once again in need of healing. I ordered Birthing From Within when I ordered some books for my girls on stillbirth. Then before I started it, my sister was faced with some pretty serious issues with her OB so I loaned her Birthing From Within in hopes that she would avoid a c-section with her third pregnancy. She gave it back to me last night and I skimmed the first chapter.

The first activity has you journal your thoughts on pregnancy and delivery. These were the first thoughts that came to me- Death. Pain. Empty Arms. Tears. Grief.

Wow. OK. So I guess it’s time to re-read it. Hopefully by the time I finish it (along with the journaling and other birth art that will come through reading it) my first thoughts will have transformed. Certainly I cannot be a doula/midwife while I have such feelings predominating my feelings of pregnancy and birth. It’s time for a rebirthing of myself, so when (if) I do have another baby it will come from a place of wholeness and light, as truly all births begin from within, wither one acknowledges it or not.

Thank God for my DR

Posted by: Sarah Trost in Being Mommy, Family, health, stillbirth/pregnancy loss No Comments »

I went to my post surgical checkup today. Dr Zepeda once again said that my remaining fallopian tube and ovary looked great and my uterus healed very nicely from the rupture. He gave no concerns about another pregnancy. Paul asked about conception during chemo and he said that was just fine, although chemo may cause infertility, it will not cause birth defects in the baby! I know there’s a lot of men out there who are told to wait 2 years after chemo is OVER before trying to have another child. His oncologist ALSO said that chemo is not a concern to him during conception and my OB said he’s known that oncologist for 30 years, and he’s known to be the best in the field (which BTW my OB and our chiropractor are also well known and all three teach in medical schools.)

You could tell that Paul was very relieved, especially that my uterus looks great. There’s a lot of scar tissue around the bladder which is typical following multiple cesareans. I’ll have to remember discussing silicone film in the future to help prevent adhesions after another cesarean.

Ultimately I’m still praying that God heals me and I can have a natural delivery. I’m not sure that God will bless us with another baby, but if He does our youngest will be 3 1/2 or older. After having ‘stair step’ deliveries, that will be a very different experience!!

This has been such a hard year on all of us. I am just begging God for a fantastic 2010. We’ll see what happens.

Raising a large family with disabilities

Posted by: Sarah Trost in Aspies, Being Mommy, doctrine and Biblical truths, health, Sovereignty of God No Comments »

I won’t fake it.  It’s not easy being a mom who is also autistic.  It’s even harder being a mom who is autistic and raising children who are on the autism spectrum.  Add to that a mom who is autistic, married to a man with cancer and undergoing chemotherapy, raising children on the autism spectrum, while undergoing miscarriages and surgeries.

Yet, I find joy in serving my family.  Not always.  I do grumble occasionally.  But I love my family immesly.

I realize that my husband would likely do better with a wife that is more self sufficient.  After all, I can’t seem to remember to brush my teeth or take my vitamins without his pokes.   But he loves me and doesn’t seem to mind (most of the time) helping me in my disabilities.  His feelings aren’t hurt when I tell him I can’t handle being touched that day.  He notices when I am overwhelmed and need some time in a quiet space (who doesn’t need that, even without a disability!)

I so desire the ability to give him a perfectly orderly and quiet environment where he can recover and heal.  I’m sure he desires that as well, yet, he recognizes that I have some limitations.

Not only do I feel that I fail my husband in certain areas, but I think I fail my children.  I can’t seem to find a way to rally them up and get them to joyfully and willingly obey.

Still, I am pleased with God’s direction and immeasurable strength and peace He has provided me.  Not that I always illuminate with peace, mind you, but it is there for the taking.

For instance, God directed us towards the gluten free diet.  Our lives are completely different thanks to this ‘simple’ change in diet!  I find that tea has helped give me some calm during the crazy parts of the day like after lunch and dinner, and seems to be helping Paul as well.  Most of all, a grasp of God’s sovereignty carries us through any trial that comes our way.  Again, not that we always react in faith!  But God is unboundingly merciful to us in such times of distress.  Ultimately, we have peace in the midst of a raging storm.

Yet another loss

Posted by: Sarah Trost in Being Mommy, Family, health, stillbirth/pregnancy loss No Comments »

I had emergency surgery for an ectopic pregnancy yesterday. It wasn’t in my liver (thankfully, as I was fearing that) but in my right fallopian tube. It was the twin to the baby I miscarried several weeks ago. The Dr said that my other ovary and tube look wonderful, my rupture has healed well, although I have a lot of scarring where the bladder is.

My dr was completely shocked as well as the NP who did my earlier scans and the conferring OB. Everyone were totally blown away. I wasn’t, I’ve felt from the beginning I had twins and one was ectopic. They would have never caught this one but I have been terribly sick the last three weeks and have been pushing for answers to why I feel this way. I thought it was a concussion and went to the ER who released me because of a positive pregnancy test and no ultrasound. Two days later I had an ultrasound and more blood work. Nothing in the ultrasound, and blood work showed a decrease in HCG as I had expected since I had miscarried weeks earlier.

I called several times but they never got a message to the OB and A WEEK LATER my OB called very concerned about my blood work and wanted to see me ASAP in level 4 (?) ultrasound. They had no appointments available and said they could see me in a week. I insisted that it was imperative that I get seen sooner and they said I have an apt IN DECEMBER. So I finally had to settle for a week, which was Wed. I went in for the ultrasound. The tech was very concerned and didn’t say much but spent a long time doing the ultrasound. She told me
to go immediately to my DR office ( which was in the same department.)

I did and was told GO HOME. He will call me in a few days (like he did with my lab work??) I refused to go home. But he’s not here, he’ll be back in a few hours, it’s his surgery day. I insisted that they get someone to look at my ultrasound. I overheard them talking to the tech who was clearly worried and said she couldn’t see the baby. Since we weren’t looking for a baby specifically (the ultrasound order didn’t say why I was there) I knew that something was clearly wrong.

So they called my OB and read to him what the ultrasound tech wrote in the report, that there was a large mass near my right ovary. They didn’t tell me this, but came and told me that they read the report to the OB while he was in surgery and he told them to not let me leave. So I waited several hours and he came in with a conferring OB who reviewed my previous ultrasounds and records. They were astounded and as it was too late to get me into surgery scheduled me for first thing the next morning. (I left at 4:30 AM for the hospital.)

When they opened me up my tube began to rupture. I bled a lot. They almost had to give me a transfusion. My BP went very very low and my hemoglobin is low (I’m taking iron for it.)

I am so thankful that I hit my head and pursued the strange symptoms and pushed for the ultrasound and insisted on staying until someone looked at my ultrasound. Otherwise, I would have ruptured at home, 45 minutes from the nearest hospital and alone (my parents were going out of town and hubby works an hour away.) I could have died. But God is sovereign and merciful and He protected me from death.

Another set of twins with Jesus. I was thankful that there was no
heartbeat as I couldn’t make that decision to take the baby out, even if it threatened my life, if it meant directly killing the baby. It’s been several months that I felt strongly I would have an ectopic and had prayed fervently that if that were to happen that God would take the baby home to be with Him before the surgery. His peace was so strongly upon me as I was wheeled into surgery.

Today Paul has cried a lot. It’s very painful for him to cry since the chemotherapy causes tremendous pain to his face. But he is so very sad that our four living girls (ages 2,4,5,6) have experienced so much loss lately. We all are.

Sarah,mom to 4 girls on Earth Kailey Faith, Bethany Hope, Taryn Grace and Kaitlyn Joy and possibly 8 treasures in Heaven

missing Allanah Charity (Kailey’s twin lost at 9 weeks in 2002)
Thomas (Benjamin’s twin lost at 6 weeks in 2008)
Benjamin Isaiah stillborn at 40 weeks on March 8,2009
Emma Liberty miscarried at 7 weeks October 7, 2009
Emma’s twin Elizabeth Shalom ectopic pregnancy removed Nov 12, 2009
three possible (unconfirmed) miscarriages in 2006-2009

At the Zoo

Posted by: Sarah Trost in Being Mommy, Family, health, stillbirth/pregnancy loss No Comments »

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My good friend and I are always pregnant together, except my #2 girl. She wasn’t pregnant then. But when she is pregnant, I am pregnant. She had three girls and I had four so we were praying for boys. BOTH needed to be boys. And sure enough, they were! But then Benjamin was stillborn and Jett was not. It was a close call for him, though. Homebirth, short chord wrapped tightly around his neck AND torso if I remember correctly. Very close call. They had to resuscitate him I think. But thankfully the midwife is very experienced and Jett did just fine.

I hadn’t seen him yet. Last week we met at the zoo. He looks just like his sisters, a little Ledman boy if you ever saw one. The stroller she used wasn’t working well for him and I offered that he could ride in mine since our 2 Yos were running around together. I couldn’t help but think that it was supposed to be Benjamin in that stroller. Our beautiful little girls running delightedly around the zoo and our sweet little boys being carried in slings or pushed in the strollers. As the girls ate next to the sea lions we would have nursed the babies. And yet Jett (thankfully) was here and Benjamin was not.

We were looking at the primates and my friend asked me if I was ok.  Yes, I was.  No, I wasn’t.  How do you reply?  I’m never completely ok.

The new stone paving leading into the zoo can be engraved (donations)and I had planned to do that with some of the money in his memorial fund. I couldn’t help but try to read all the ones that have been engraved, my eyes were glued to them on the way in and on the way out. You can get 1,2, or 4 engraved at I think $100 a brick. Man if I had $400 I take up a whole square!!

We haven’t ordered Benjamin’s headstone yet but it’s picked out. We need to decide what photo to use and what epitaph. I’ve had a hard time getting hubby to sit down and do it. Understandably, it’s a difficult thing to do for sure.

I think we’ll go to the cemetery today.

It is well with my soul

Posted by: Sarah Trost in Being Mommy, Family, health, QF, Sovereignty of God, stillbirth/pregnancy loss, Uncategorized No Comments »


I began to miscarry Sunday. I went into full fledged labor on Monday. It is so hard to tell my girls, but my 5 YO keeps saying “I hope this baby doesn’t die” and my 6 YO keeps telling Emma goodnight. So I told them it looks like God is taking Emma Liberty to Heaven.

We have a funeral today, a friend of mine delivered a stillborn little girl named Sara Beth at 39 weeks. She knew that she had trisomy 18 so this was not a surprise, but there was great hope that God would perform a miracle and they could bring their baby girl home.

Despite my miscarriage I have chosen to go to the funeral. I feel that I am likely to be the only one there who really truly knows what it is like to hold your full term newborn baby’s lifeless body in your arms.

I am sorry I never got to see Emma’s face, but I will one day. Heaven is such a better place and I am happy that she is happy.

So, my births go in this fashion

Alannah went on to Heaven at 9 weeks August 2002, her twin was born healthy at 32 weeks

Kailey Faith 1-23-03 (6)

Bethany Hope 2-22-04 (5)

unconfirmed miscarriage June 2004

Taryn Grace 5-4-05 (4)

Kaitlyn Joy 3-30-07 (2)

unconfirmed miscarriage May 2008

Thomas miscarried at 6 weeks, July 2008, his twin joined him later

Benjamin Isaiah born sleeping 3-8-2009 at 40 weeks 1 day

unconfirmed miscarriage August 2009

Emma Liberty miscarried at 6 1/2 weeks October 2009

I am storing up treasures in Heaven. 🙂

baby? no baby?

Posted by: Sarah Trost in Being Mommy, health, QF, Sovereignty of God, stillbirth/pregnancy loss No Comments »

Well, they couldn’t find a baby. The cyst has grown so large it is pushing the uterus out of view of the ultrasound. They don’t know if the cyst is hiding a uterine pregnancy or if the baby is in the ovary hidden by the cyst. I have another apt on Monday. That will make my third ultrasound already but it’s supposed to be a super high level US.

Paul is having surgery today for the catheter port and will start chemo on the 12th. He will have scans about 4 weeks after he starts chemo to look for more cancer. Right now he’s still too swollen to see much (after having had surgery.)

I’m having trouble putting into words how I feel about not knowing about the baby. I think that the waiting is not good for us as a family right now because of the cancer. But at the same time, hope keeps us going and if I found out that I do indeed have an ectopic pregnancy, which is a death sentence for my baby and may require some serious medical treatment, that would be really awful.

My God is might to save. amen?!

holding on to Jesus

Posted by: Sarah Trost in Family, health, Sovereignty of God No Comments »

Paul is having surgery Thursday and he’ll be there a week or longer. The surgeon said that there’s too high a risk that there is cancer. He said that if we waited any longer it would have DEFINITELY turned into cancer but there’s a good chance that some of it already is, even though the biopsy came back negative. So, he’s removing a foot (at least) of his colon.

I did a google search for fever (one of his ongoing symptoms) and cancer and found that a tumor in a cancer patient can cause a fever. So hopefully this will take care of that symptom. He’s in a lot of pain right now, but we think that most of that is his hernia, which also needs to be repaired. He has a bone in the area of the cancer, though, that has a lot of pain so I can’t help but wonder if he has cancer in that bone.

I can say “God’s will be done” all day long, but the fact is that we will miss him terribly while he’s gone and it would be totally devastating to us if he doesn’t make it. The thought of loosing my husband so soon after loosing my son….

Well, I’ve had a hard time accomplishing much. I’m so tired. I grieved the two days that I waited for the results of the biopsy.

Holding on to Jesus

The Girl Who Doesn’t Age

Posted by: Sarah Trost in health No Comments »

Brooke Greenberg is the size of an infant, with the mental capacity of a toddler. She turned 16 in January.

Scientists are fascinated by Brooke’s case. Although there are other children who fail to grow or develop in some way, Brooke’s case may be unique.
Brooke hasn’t aged in the conventional sense — her body is not developing as a coordinated unit, but as independent parts that are out of sync. She has never been diagnosed with any known genetic syndrome or chromosomal abnormality that would help explain why.

Also remarkable is Brooke’s uncanny ability to suddenly recover completely from life-threatening illnesses including a brain seizure, a stroke, and a brain tumor, with no damage left behind whatsoever.

The “real Age” website by DR OZ has some great information on how to stay young. To me, it’s not a matter of living to be 120. Instead, it’s about the quality of life while I’m here. My Dad has lived with cancer since I was a child. Because of his excellent health, only now has his quality of life been impaired (he has to walk with a walker and is feeling some pain. He also had back surgery because the tumor on his spinal column pushed his ribs and spine out of whack.) He could have had the traditional treatments when he was diagnosed 20 years ago, but he chose not to and I think thus far he’s very happy with his decision.

The argument has been made that if we DID have people live longer, there wouldn’t be enough space and resources. To that I say if you reject the evidence that there ARE enough resources and space, then what’s the point in arguing about it? People aren’t starving because there isn’t enough food, people are starving because of corrupt governments. It’s easier to control people when they are starving and living in poverty. The US gives so much food away, that sits and rots because their governments won’t let them have it. And in our own country there is more wasted food then we could possibly imagine. I’m not talking about children who don’t eat their veggies, either. I’m talking about restaurants and grocery stores who throw it all away because it doesn’t sell.

There is no possible way that the world’s population would outgrow the space provided. People would just need to spread out more (there are many cities that are way overcrowded.) However, I do not see wisdom in having people live to be 150+ years (even if possible.)

Instead of seeking the secret to retarding age, drs should be more focused on having healthy people in general! Keeping wrinkles and cellulite away is a bigger industry in general then having healthy hearts and bodies, though. People would rather get injections of botox then eat a healthy skin diet!

Be happy and healthy,
Sarah