Elliot’s Expeditions

Dolls/Bees National Competition at OneTrueMedia.com

2010-07-08T17:36:00.001-05:00

Photo and video editing at www.OneTrueMedia.com

Independence Day - In AWE of the fireworks!

2010-07-07T15:57:00.000-05:00

Wholeness of Life

2010-03-20T21:42:00.001-05:00

As noted on the MOSAIC website:

"In one study, respondents ranked supporting people with intellectual disabilities as a low priority – even below helping animals."

My dear friend, and creative advertising genius, Marty, created videos found in the above mentioned link in support of an organization that provides persons with intellectual disabilities with much needed help. As they utter in their mission statement:

"In partnership with people who have disabilities, Mosaic provides supports and advocates that all may realize God's gift of wholeness of life."

Indeed, ‘wholeness of life.’ A wholeness that I cannot state that I ‘truly’ experienced until after the birth of our beloved Elliot who proudly sports an extra 21st chromosome. Ironic. I was not whole until he entered my life. He has given me that gift, and sadly, many like him are not able to experience this exact wholeness themselves.

Please spread the word with regard to my friend’s work in support of this campaign. And yes, the video creation is very poignant and I assume was created on a pro bono basis. God bless, Marty! Thank you for working toward serving people with intellectual disabilities.

Am I at fault?

2010-02-26T08:54:00.001-06:00

A dear friend posed the question, “What are your areas of weakness in raising a kid with special needs?”

Me? Weaknesses galore. I can certainly admit it. I suppose my primary fault is over-protectiveness. Case in point: Elliot came down with a cold three weeks ago – and when Wee E gets a cold, it is nothing to shake a stick at. But, what do I do? I immediately pull him from school and he’s now been vacant from said classroom for THREE WEEKS. It will invariably turn into an upper respiratory infection or a horrible pneumonia (as it always has in the past) if he is further worn down by 4 hours per day, 5 days per week. We’ve had the therapies in house…we’ve toyed with OT and PT and ST here at home, but really, have accomplished nothing. I spend more time chatting with said therapists (as I rarely have adult interaction) and they leave. So, to school he goes and wow, do they work him! It’s fantastic.

But, fantastic is only fantastic if my fragile boy is healthy. He goes, he becomes sick and he’s out for a month! I have now received the district supervisor call, “Um, Michelle, Elliot has been at school for 10 or so days this last semester…do you want to reinitiate in-home services?”

“Well, no…if Elliot is sick, I really don’t want people in my house anyway!” I only pull him out when he’s sick, or when he has a surgery scheduled and needs to remain healthy prior to the procedure. It has been a really hard winter from a health standpoint.

I don’t think the general public understands just how sick a child with Elliot’s needs becomes with a common cold, with a silly gastrointestinal flu that put him in-house at two hospitals for a MRI and an EEG…vomiting for 8 days solid. After that was said and done, it turned out to 'only' be the flu and his brain (although his brain has other issues) was okay. He weighs 23 pounds. He has a feeding tube to help with an additional diagnosis; he has no gallbladder; his liver has fought fibrosis; his spine has been corrected. And sadly, he cannot speak; he cannot walk and he’s pushing four years of age.

So yes, overprotective. If I cannot speak for Elliot, who will? But, do I take things to the extreme? You bet…and really, I just wish that I could step back and let him enjoy life just a little bit. I wish that I could take Elliot to the grocery store (he has a special affection for the grocery store, although he won’t eat solid food); I wish that I could have accepted the birthday party invitation on his behalf, taken him and let him enjoy the party; I wish that he could realistically be in a school setting 4 hours per day, 5 days per week…

But Elliot, a 32-week preemie…a boy that has undergone multiple surgeries, a boy with little to no immune system, needs to be protected.

So, we’ll alter the IEP. We’ll send dear Elliot to school three days per week and see how he rolls. He is far, far behind from a cognitive standpoint – from a gross motor standpoint, and Wee E needs to be in school – if only for three days. And what will I do? Well, momma bear will worry her little head off each and every day that he is there. I’m trying to find a happy medium.

2010 - thus far...

2010-01-13T08:10:00.000-06:00

Happy New Year? Well, I’m trying to look at the bright side of things. But, multiple illnesses have kind of sent me over the edge. My poor blog – not updated since Halloween!

We started the year off with a bang. Sir Isaac took a trip to the ER on New Year’s Eve. He was diagnosed with a bilateral ear infection the previous Wednesday. Prescribed antibiotic produced an allergic reaction and needless to say, according to two ER physicians, he did not have an ear infection…no strep, no Influenza…just a high fever; a silly fever that lasted for three days, sitting around 104. Then, the rash – a horrible rash. He had Roseola – very common, and not very serious unless the fever goes untreated or unless your name is ‘Elliot’ and you really don’t do well fighting viruses. Elliot is currently fever free - for now!

My Nora was in Kansas City for her first dance competition of the year (with my husband and mother, not me, no less) over that particular weekend. I missed the entire thing. She was fabulous I was told, but came home and immediately began vomiting (at school) the following Monday. Three days of puke!

Staph infection also set in – Elliot twice on his new g-tube. Wee E has been on antibiotic for over a month!

Yesterday, Isaac began to vomit. Just in the morning, so that particular symptom bothered me quite a lot. Please vomit all day of you are going to vomit…otherwise, momma will think the worst. Momma knows too much! He’s had episodes of one puke here, one puke there before, so I worry. I do suppose that he is just a child that has a weak tummy, gets car sick, etcetera, but you know me…read between the lines.

This morning – sick husband, lying in bed…not moving with a high fever. I have yet to approach the boy’s bedroom. I’m scared.

Me?

I cannot get sick. I never have been allowed. But today, I will head to the endodontist to have a root canal (gone bad) retreated. Will I complain? Hell no! Will it hurt? Most certainly, yes.

But, as all of the fellow mommas know, our ills are in our head. Never more.

My Happy New Year will commence on February 1. That’s the plan. Does someone want to bring me a bottle to ring it in appropriately?

31 for 21 – Why?

2009-10-30T16:35:00.004-05:00

“A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated. Data from the National Down Syndrome Cytogenetic Register in the United Kingdom indicates that from 1989 to 2006 the proportion of women choosing to terminate a pregnancy following prenatal diagnosis of Down syndrome has remained constant at around 92%.” And the stats, in 2009 thus far, remain consistent.

All life is sacred. The life of an individual whose body contains an extra chromosome on the 21st pair is sacred. Said life may be imposed with a different set of challenges, but sacred nevertheless.

I am not one to judge. The 91-93% of women who choose to terminate have their individual reasons for doing so and possess the individual right as well. But frankly, I think that the termination rate remains high because mothers (and fathers too) are not educated. I use the term “educated” in ambiguous terms though. They may very well be educated in the typical sense, but they do not understand, notwithstanding the challenges, just how very much love and how very much life a person with Down syndrome can possess and bestow upon those around him or her. Otherwise, why terminate?

Our family was made aware of Elliot’s enhancement following his grand entrance into the world at 32-weeks gestation. I had the typical tests. The ultrasounds (many ultrasounds) showed no markers. My obstetrician still to this day indicates that he did not see the traits even upon birth. Elliot was whisked away so exceedingly quickly to the NICU across town. The neonatologist made the call; the call which changed our lives; the call which changed our lives for the better.

I refused tests when I became pregnant with Isaac (Elliot was just a few months old). I knew better and to me, it did not matter.

Down syndrome is beauty in a very raw form. Pure beauty.

Cliché to those who are blessed to have a child with Down syndrome, but to others, a death sentence. A palpable death sentence, otherwise why terminate?

Mothers and fathers, and sisters and brothers, and anyone who knows well, a child or an adult with Down syndrome would agree: they are magnificent, enlightened human beings, brought to this terrain with a purpose. They see only beauty on earth, and through their sight we are free-thinking, we are more open-minded, we are loved and we love.

But to those who know nothing of the extra chromosome, the potential life is lost…lost in 91-93% of cases.

I know that the majority of the individuals who read this blog have a child or a relative with Down syndrome.

But, for those who do not, I have once again tried to write 31 posts. Unfortunately, this year, I have failed. Simple life got in the way.

October is Down syndrome Awareness Month. And every October, really every day, I try to educate.

I would like to believe that we live in a society that no longer practices Eugenics (through abortion). Maybe I should not go there, but does the biologist who founded the movement so many years ago still have influence? Why else was the 2007 recommendation made: “All pregnant women, regardless of their age, should be offered screening for Down syndrome, according to the Practice Bulletin issued by The American College of Obstetricians and Gynecologists (ACOG).”

What really is a desirable trait and what really is a defect?

In my estimation, it is not for us to say. But what I do know is that if given the chance to take my Elliot’s extra chromosome away, I would not do so.

Life for my dear boy has not been easy from a medical standpoint. And really, it never will be. But yet, he pushes through. He smiles. His courage is unwavering. He does not complain. And he loves, so very unconditionally. Every day I learn something new. Every day I love a little more. My path is more beautiful than I ever imagined…

Thanks

To

Elliot.

31 for 21 – Down syndrome Births Drop in UK

2009-10-27T15:35:00.002-05:00

More accurate screening and an increase in the number of younger mothers being screened for Down's syndrome may have forestalled an expected increase in the number of babies born with the condition in the United Kingdom, a study shows.

More accurate screening of moms in the U.K. meant fewer Down's syndrome births, according to new research released this week.

From 1989 to 2008 in the number confirmed prenatal or postnatal diagnoses of Down's syndrome in England and Wales increased by 71 percent -- from 1,075 to 1,843 -- according to Dr. Joan Morris and Dr. Eva Alberman of Barts and the London School of Medicine and Dentistry.

However, the number of babies born with Down's syndrome remained relatively steady despite an increase the age of mothers -- there were 752 in 1989 and 743 in 2008 -- because of terminations following prenatal diagnoses, they reported online in the British Medical Journal. The termination rate remained unchanged.

Dr. James Goldberg of San Francisco Perinatal Associates, past chair of the American College of Obstetricians and Gynecologists' Committee on Genetics, said he didn't know whether there was a similar trend in the United States or in other countries.

He said he believes the situation would be much the same here, although at least one small study has shown an increase in the number of live Down's syndrome births over time in women older than 35.

A spokesperson for ACOG noted that there are no national U.S. data on the number of women who receive prenatal screening for Down's syndrome or reliable data on the number babies born with the disorder.

Morris and Alberman examined data from the U.K.'s National Down Syndrome Cytogenetic Register, which includes about 93 percent of all diagnoses of Down's syndrome in England and Wales.

The database included information on diagnoses in live births and stillbirths, as well as antenatal diagnoses and subsequent terminations, fetal losses, and a small number babies brought to term.

Over the 20-year study period, the large increase in diagnoses occurred even though the overall number of births remained constant.

Starting in about the mid-1990s, the researchers said, screening for Down's syndrome has been improved through new methods and technologies.

Aside from the slightly different ages at which pregnant women were previously recommended for screening in the U.K. and U.S., Goldberg said, screening in the two countries is similar.

Now, in both countries, it is recommended that all pregnant women receive an offer of screening with a discussion of the pros and cons.

Without these improvements in screening, Morris and Alberman said, the number of babies born with Down's syndrome would have increased by an estimated 48 percent -- from 959 to 1,422 -- as a result of women waiting until later in life to have children.

A 40-year-old has about 16 times the risk of having a baby with Down's syndrome as a 25-year-old, they said. During the study period, the proportion of women younger than 37 who underwent screening increased from 3 percent to 43 percent.

The proportion of women 37 and older who underwent screening, on the other hand, remained constant at about 70 percent.

Morris and Alberman said additional studies to determine why more older women don't receive screening for Down's syndrome would be valuable.

"To ascertain whether the decision is an informed one and, if not, to address the lack of information, is important," they said.

During the study, the percentage of pregnant women who received diagnoses of Down's syndrome and went on to have the pregnancy terminated remained steady at about 92 percent.

Goldberg said that in California, data indicate that this proportion is closer to 60 percent.

But he noted that a large database of all Down's syndrome diagnoses does not exist in the U.S., and the figure is likely to vary widely throughout the country.

The ACOG spokesperson said that it's unclear how many terminations result from learning of a Down's syndrome diagnosis, because "[neither] the CDC nor anyone else collects data on the indications for pregnancy terminations."

31 for 21 – or not

2009-10-22T20:39:00.001-05:00

I’m a horrible 31 for 21 blogger this year. Must be in a funk. There are multiple things to say and multiple ways to say them, but no words. I’m scared. I’m horror-struck and afraid that Elliot is going to get hit very, very hard with H1N1 and there won’t be a damned thing that I can do about it. The city is flooded with sick children, sick adults, sick everyone. I know what an upper respiratory infection does to his system; I know what basic illness does…I do not know yet what this will do. We get stuck in a hospital bed for a week with a cold because of the refusal of fluid. We’ve done pneumonia; we’ve done RSV; we’ve done Influenza A twice. We have not done this and momma is scared.

Many typical children that I know are out for a week. A friend said like a puddle on the couch with tears and tummy aches and fevers spiking at 104+. My E will be in the hospital. It’s a given. I know – there are others like him and many, many other friends whose children will be hit harder than hard. E is not alone. Let’s all pray that it goes away soon.

31 for 21 – October 18 – All decked out

2009-10-18T09:31:00.000-05:00

I loved this costume. It actually came from our dear friends, Rhett and Pam.

Elliot crashed hard after an eventful Halloween a few years ago!

31 for 21 – October 17 – Parenting

2009-10-17T10:55:00.001-05:00

Worth reposting - go Parenting Magazine! Do check out the 2009 entries as well.

31 for 21 – October 12 – Wee E

2009-10-12T09:13:00.000-05:00

Such a little pumpkin – Wee E weighed in at a whopping 5 pounds in October of 2006. Still my little man, he now sits at 24 pounds at three years old. He’ll always be my baby!

31 for 21 – October 9 – A blessing and a curse

2009-10-09T20:25:00.000-05:00

Sorry, no Elliot photo today - today took a turn.
___________
I suppose one could say that I am savvy from a medical standpoint. A mother learns quickly when multiple organs and multiple specialists are involved; when prematurity is involved; when home health, home medical equipment; when the masses

are

involved.

Indeed, the extra chromosome, beloved as it may be, has thrown many a momma a hell of a curve ball.

If momma is not involved, does not learn quickly, does not ask the right questions to the right specialists at the right times, things fall through the cracks and babe suffers.

My babe has not suffered. He is armed, and both fortunately, and unfortunately, so am I.

But still, with all of the information in my head, I tend to read between the lines a little bit too much. And sometimes, it’s not a good place – between the lines.

Case in point – today.

I know leukemia, not personally, but I know many a mother who has dealt with the wretched disease (they are rocks and they are smart and their kids receive the best care known to man). I know that Elliot has a higher probability than others who are not chromosomally enhanced. I know what to look for.

But today, it was Isaac. The groin nodules, the bruises, and thank heavens, no petechiae. Yah, he’s two and is a crash and burn kind of kid, hence the bruises, but then I see a big one on his lower back.

I

AM

A

MESS.

Call to pedi; immediate appointment today (GOD love her); blood work STAT; and no, she indicated that I was not really that crazy. Said she runs CBCs all the time to rule things out on her own kiddos. Well, we ran it all, and she did not question me.

“I know; you and Elliot have been through a lot; his surgeries; his ‘stuff.’”

“It’s okay, lets run it all stat and you can breathe over the weekend.”

She calls me – ‘herself’ (you all know – pretty damn rare unless they are good).

“Michelle, it’s normal – we are waiting on the SED rate, but the majority is normal.”

I am breathing. My husband wants to cut my head off, but I am breathing. Isaac was probably poked for nothing, but I am breathing…I am armed and my kids are armed.

So yah, a blessing and a curse. The knowledge. But, when the rubber meets the road (often in our household) it’s more of a blessing. It’s better to know and treat if need be…and it is better to breathe.

31 for 21 – October 8 – School Boy

2009-10-08T14:28:00.001-05:00

A little bit out of succession, but this is too cute not to post now. Elliot loves school, especially when he gets to play in shaving cream with his buddies! I tried for the life of me to fiqure out what he smelled like when he came home that particular day...

31 for 21 – October 7 – Those Eyes

2009-10-07T06:53:00.001-05:00

Sometimes the day turns into night and I don’t even know what happened. Like yesterday, when I neglected to get my 6th post up. It was a crummy day with no rest for the weary and getting up at 4:30 a.m. to get a few things done before the rest of the family awoke did not seem to help.

And sometimes, I just need to learn how to let things go. There is always going to be the person who rubs me the wrong way. There is always going to be the bitter driver who turns right in front of me and uses a horn when really it was MY turn to use it. There will always be situations that I cannot change or attitudes that I cannot alter. Yesterday was a day full of people and circumstances like that. But last night, after one hell of a day, I looked at my Elliot – full of smiles and eyes bursting with his special fairy dust. The kid has the most incredible eyes – one look and you see right into his soul. Many children with Down syndrome are blessed with gorgeous Brushfield's spots: beautiful speckled irises. The little white spots occur in many ‘typical’ children, but are far more frequent in kiddos with Trisomy 21. They were described in 1924 by Thomas Brushfield and are due to aggregation of a normal iris element (connective tissue). Truly beautiful is what they are. One look and nothing else matters. Elliot is, beyond doubt, a gift from God. If you click on the photo below, you'll see what I am talking about! ;)

31 for 21 – October 5 – Big Sis!

2009-10-05T06:52:00.000-05:00

Elliot will forever have his sister wrapped around his finger. Nora, at the age of 4, had seen more from a medical standpoint than most people see in a lifetime. She’s such a strong little lady because of it. She’s really Elliot’s biggest cheerleader and does more than her fair share of advocating. I am so proud of her. Down syndrome changes a family dynamic. The real meaning of life and love is always prominent.

31 for 21 – October 4 – I got people!

2009-10-04T08:33:00.000-05:00

Down syndrome brings you close to so many wonderful people. In this photograph, Elliot is being held by his primary NICU nurse. I love this woman. Love her so much in fact that she is Elliot’s Godmother. She stepped up to the plate and volunteered to take care of Elliot while in-house at one of our local NICUs. I do believe that many of the other nurses has a bit of trepidation – not necessarily because Elliot was a challenge – yes, he was facing some ‘stuff’ at this point (more, much more, later), but primarily because I am sometimes a nightmare to deal with. My ‘momma advocation mode’ came out really early!

Needless to say, because of Elliot, we have been touched my many angels. Some of my best friends are men and women who either have a child with Down syndrome, or work with kiddos who have been blessed with an extra chromosome, or people like Sheryl in the photo – she just has a big, big heart. Because of Elliot, we have people, and they are some of the best people in the world!

31 for 21 – October 3 – “Hey, It’s me; Elliot!”

2009-10-03T09:10:00.000-05:00

Mr. mighty he was! As a 32-week preemie, Elliot spent a total of a mere 12 days in the NICU. Said ‘bye bye’ to the O2 in house at 12 hours! And really, based upon his gestational age, he should have weighed a lot less than 4 pounds! He really made his presence known at the hospital, and had his favorites too. Screamed whenever a particular neonatologist came into the room. I knew why!

“Look out world – Elliot had arrived.”

31 for 21 - Oct. 2 - Hello Baby!

2009-10-02T05:14:00.001-05:00

New arrival! Love those tiny, tiny feet.

31 for 21 – October is Down syndrome awareness month

2009-10-01T06:46:00.000-05:00

And in conjunction with the celebration, I am again going to participate in Tricia’s annual 31 for 21 challenge. This year, I will chronicle Elliot’s life in photos. What a wonderful life it is.

Here he is still in utero, awaiting arrival at a mere 32 weeks gestation. We were in for a surprise. Albeit a shock at first, nothing but a miracle directly thereafter.

Government-Run Health Care Would Ration Care for Disabled Children, Parents and Lawmakers Warn

2009-09-17T06:39:00.002-05:00

Wednesday, September 16, 2009
By Penny Starr, Senior Staff Writer

(CNSNews.com) – Rep. Trent Franks (R-Ariz.) on Tuesday shared a personal story that shows why he is passionate about protecting the most vulnerable in society -- and why a government-run health care program would not only fail to offer that protection, but could end up rationing care for some people, including children with disabilities.

At a Capitol Hill press conference, Franks said the parents who brought their special needs children to Washington, D.C., had the most compelling stories to share.

“But I would cite just one (story) that has a personal connection to me,” Franks said. The story involved an “old man” and his firstborn son, who was born with deformities of the mouth – a “missing pallet” and other issues, Franks said.

“And the doctors at that time in the small hospital said, ‘Well you can’t breast feed this child, you can’t feed him. So the best thing to do is to do away with him in a merciful manner.’

“Well, the man said ‘No, this is my first child, we’re going to take him home and do the best we can. We’ll make a machine to feed him.’

“The machine turned out to be an eyedropper and a pill cup,” Franks said. “And the child grew up to be big and strong. And of course I’m thankful to that old man, because he was my dad.”

Franks said he had 11 surgeries before he was 9 years old.

Franks was flanked by more than a dozen parents, some with their disabled children in tow and others carrying photographs of their children, including children who died from complications related to their disability.

“I don’t want to draw attention to myself,” Franks said. “I want to draw attention to all these people and remind each of us, no matter who we are – I’ll quote a Democrat. He said that a society is measured by how it treats those in the dawn of life, those in the shadows of life and those in the twilight of life,” Franks said, referring to Hubert Humphrey.

Kristan Hawkins, whose son Gunner was diagnosed with cystic fibrosis at two months old, said her research on her son’s condition led her to discover that government health insurance in Canada and some European countries don’t cover the special medication he needs.

Hawkins started a Web site, healthcareforgunner.com, and coordinated a group of parents from around the country who share her concerns. She said she came to Washington to lobby against government-run health care.

“I want my family and my doctor to control my son’s health-care decisions, not a government-appointed committee,” Hawkins said.

Barb Farlow said her daughter, who had a devastating genetic condition, died 80 days after she was born and 24 hours after she was taken to a Canadian hospital for surgery.

“We later discovered that no diagnostic tests had been done and a ‘do not resuscitate order’ was written before we had provided consent,” Farlow said. “The discovery that our fundamental parental rights had been violated in such a manner without cause left us shocked and devastated.

“Sadly, we believe that to our (Canadian) medical system, Annie was not a child but a label with associated statistics and a price tag,” Farlow said. “We will never know Annie’s potential, and so we grieve her death and the life she might have had.”

Mary Kellett said she was glad she could fight for treatment for her 4-year-old son, Peter, who was born with a chromosomal abnormality.

“We were told to wrap him in a blanket and let him die,” Kellett said. “We were told there were no survivors with Trisomy 18 beyond two weeks.

“We fought to give Peter the ordinary care our other children would be given, and we thank God every day this precious little boy is here blessing our family,” Kellett said.

Marty McCaffrey, a neonatologist and the father of a 9-year-old daughter with Down Syndrome, said he sees problems with Democrats’ vision of health care reform:

“We have been assured that government restructuring of health care will not require rationing, affect current services, create distribution panels, nor subsidize abortion,” McCaffrey said. “Even a neonatologist knows that if you increase demand for services, the cost will rise. If the health services budget is drastically cut while larger numbers of patients are added to the roles, rationing is unavoidable.”

McCaffrey said 90 percent of women who are diagnosed as carrying a baby with Down syndrome terminate the pregnancy – a number he said could grow even larger under currently proposed health care reform.

“Many will never meet a child with Down Syndrome,” McCaffrey said as he held his daughter Shea’s hand.

Erica Kelley’s two-year-old son also has cystic fibrosis. She said he is doing well because of the outstanding care he receives through her husband’s employer-provided insurance.

“The people of the U.S. have access to the best medical care in the world,” Kelley said.

Eileen Benthal’s daughter, Johanna, has congenital brain malformations. Johanna has had 70 surgeries, mostly on her brain, in her 13 years of life. Her condition causes stroke-like symptoms, cognitive and motor delays and seizures.

Benthal said Medicare is her daughter’s secondary insurance and that treatments and medications are regularly denied. “I shudder to think of how we would fare with (Medicaid) as primary (insurance),” Benthal said.

Rep. Cathy McMorris-Rodgers (R-Wash.) also attended the conference and said she shares the parents’ concerns about a government-run health care program.

“We wanted to just give you a perspective of a community of people who are watching health care reform very closely and want to make sure that the reform that ultimately passes Congress doesn’t leave a very important population behind,” McMorris-Rodgers said. “These are people that are dealing with health care on a daily, if not an hourly basis -- and I know this because of my own experience.

“I have a son who is two years old,” McMorris-Rodgers said. “He has Down Syndrome and it means we are in the doctor’s office a lot.”

Franks said the community would be harmed by a government-run health care plan.

“I truly believe with all my heart that government-run health care will diminish all of those people, those in the dawn of life, the unborn,” Franks said. “This will be the largest expansion of abortion since Roe versus Wade.

“Regardless of the debate that has occurred, we’re taking the lives of 4,000 children every day, and if that’s the administration’s health care plan for the unborn, I don’t think that’s a good one,” Franks said.

The parents distributed a white paper at the press conference detailing the effects of health care rationing. They also sent a letter to President Barack Obama and leadership in the House and Senate expressing their opposition to a government-run health care plan.

Special Exposure Wednesday - Glee

2009-09-09T06:50:00.002-05:00

For more, go here.

Happy birthday, baby boy!

2009-09-06T15:17:00.006-05:00

Isaac is a jovial, vigorous and very energetic two-year old. And, after two years of his rambunctious nature, I’m still kicking…and so is Jeff.

Our boy is in love with cars, Elmo (of course), balls and the phone – cellular phones, the home devices, play phones, etc. He has taken it upon himself to throw my mobile in the trash on more than one occasion. His language skills are really above average and he spends a great deal of time engaging in his own special conversations on the phone. It is quite comical.

Isaac especially enjoys his brother, Elliot. The two are really starting to play well together, and while I had a horrible premonition regarding Elliot’s needs being pushed to the sidelines after Isaac arrived, the situation is quite the contrary. Indeed, it is hard to witness Elliot’s younger sibling surpass him in all areas, but Isaac’s achievements only make me appreciate Elliot’s all the more. I literally forgot just how quickly things transpire with a typical child. He crawled, walked and ran in no time flat. He masters a multitude of fine motor skills. He is teaching Elliot sign language due to the absolute brilliance of Rachel Coleman. He eats like a horse and really does not dislike much of anything he can shove in. But what he does best is motivate sweet Elliot. Charming is an understatement.

Isaac too is an angel…an angel of typical chromosomal make-up, but a gift from God as well. I remember all too well how the physicians tried to impress upon me the unqualified value of an amniocentesis while pregnant with Isaac. Of course, I refused. And, Isaac was born just as typical as typical gets…all boy and all Isaac.

God bless you my two-year old, my baby boy with angelic curls who now does so much more than toddle! Happy second birthday (September 7, 2009)!

Kindness

2009-09-03T20:19:00.001-05:00

I have neglected to blog about Elliot’s most recent setback; of course, it is much easier to post quickly on Facebook and the hospital’s server is slow. But, he’s in house with terrible H1N1 symptoms. Not confirmed as it is hard to confirm with the simple Influenza A/B test, but he refuses liquid and becomes dehydrated quickly when ill. In to the ER on Tuesday night and still in house. On IV and getting meds as well.

Needless to say, his wonderful teacher had a special project for his peers today. They designed this poster for his room and delivered it. To say that I was touched would be an understatement!

Elliot-Superstar!

2009-08-29T07:55:00.002-05:00

Elliot’s IEP review went very well. Of course, I had a lot of apprehension about it, and I was wondering just why we were reviewing a mere one week into school. Turns out that it was simply a formality and his abilities were not documented since he was an infant. It was simply part of the Federal guidelines.

I have also had a great deal of trepidation regarding school in general terms. But Elliot is a rock star. His specialists are phenomenal and his peers are adorable. I have seen a marked improvement in Elliot’s overall demeanor in barely one week!

The vice principal in charge of the program is simply an angel. I thank him over and over and he keeps telling me that I pay taxes and these services are provided as part of the ‘plan,’ mandated in fact. But really, the program would be squandered if these wonderful people were not in place to implement it.

The school has ordered an adapted swing for the playground for Elliot and only Elliot. The swing is as sturdy as it could ever be. They were worried that Elliot could not participate with the others during outdoor activities, so they ordered the swing to have in place right away.

Elliot has a special chair so he can eat (or rather drink his Pediasure) with the rest of the class during meal times.

Elliot has an “Elliot shelf” in the classroom that his toys are kept upon – away from the germs of the toys that are kept on the floor.

Elliot has a one-on-one special education instructor, a speech therapist, an occupational therapist, a physical therapist and a special person that will be brought in to work with him on adaptive communication strategy. What’s more, they all love my boy.

The IEP review brought nothing but rave responses about Elliot’s social skills and desire to participate and learn. Yes, we all know that he is behind, and also behind others his age with Down syndrome, but these people don’t bother with that. Elliot will be at Elliot’s full potential, and these people would have it no other way. I could not be more impressed.

They have invited Isaac and me to lunch anytime we wish to visit. They have kept things just as sanitary as humanly possible. They are even helping with potty training. They have agreed to bring in the help of our personal developmental psychologist regarding Elliot’s oral aversions. Simply stated, they have never said “no” to anything that I have brought to the table.

Yesterday when I dropped Elliot off at school (I walk him to the door and his wheelchair is waiting), the children all came running to him.

“Look, its Elliot!”

“Hi Elliot!”

“Can I play with Elliot today?”

They too love my boy! They see little to no difference. What a brilliant program – one that will both help my boy as well as let his little peers know that “normal is not always normal,” that “difference is good,” and that we are all created by one God. Of course, religion is not brought into the public school system, but I saw nothing but God’s little angels surrounding my Wee E.

Elliot is a superstar and momma could not be happier!

It's okay.

2009-08-21T21:17:00.004-05:00

There really has never been anything definitive to hold on to, so I simply hold on to him…Elliot that is. He is definitive, but his abilities are not. But, it’s okay. Now it is time to let him go, speaking figuratively of course.

Elliot’s school vice principal phoned this morning. It seems that it is also time to have him reevaluated.

“We have not had a formal evaluation completed since 2006.”

Sure, that’s when the geneticist defined his enhancement in writing. That was definitive; nothing was left open to consideration. Elliot is definitive, but again, his abilities are not.

Somewhere between the lines…I’ve said it before. That’s where we are. And sometimes things are better left unspoken (and not defined in black and white). It is easier that way. I will forever defend his intentions, although he generally fails in the minds of most. It is okay.

The vice principal in charge of the special education program at the grade school wants to define. Of course, the federal government mandates it. It’s part of the deal.

We will call in all of the specialists: occupational and physical therapy, speech language pathology, the audiologist, the school psychologist, the feeding specialist…the masses. Of course, Elliot’s goals have been delineated formally in his Individual Education Plan, but we need to go one step further according to the school vice principal.

I was a bit taken aback that this meeting was to take place so hurriedly. But, I understand and I certainly take no offence whatsoever.

It is what it is and it will be what it will be. I know that it will be hard to read, but I need to let go.

I indicated that I wanted to look at obtaining a walker for Elliot. I revealed that it took over a year to obtain his wheelchair. The school vice principal said, “Michelle, we take it upon ourselves to do everything we can to help him so he no longer needs the wheelchair.”

“We will do everything in our power to help your son succeed…to learn, to grow.”

I understand; this is what the meetings and the evaluations are for. It is all for the best.

Undeniably, our school system is in place to help our son. The school vice principal understands that Elliot is the only child in class with needs a bit greater than the others who have been defined as having said needs.

I do have to let him go. He will be in good hands (and hearts), and yes, the previously undefined will be defined (at least to the best of the school system’s ability). And, it is all okay.

Wish our dear boy luck on Monday.

My child – the school boy!

2009-08-18T07:54:00.005-05:00

Elliot starts preschool on Monday.

IEP – check.

Teacher home visit – check.

School open house – check.

Mom – still a wreck.

We visit the pediatrician today for the well-child check-up. Elliot will have his repeat liver panel, which, by the way, I have been avoiding like the plague. I have ruled out autoimmune hepatitis and other not so nice autoimmune diseases, but we still do not have a definitive answer as to why our son has liver fibrosis. As noted, we think that his gallbladder (now gone) caused the issues, but today’s test should either confirm he’s a-okay or it will send me on another rollercoaster ride to hell and back.

Although quite possibly an impossibility, I need for Elliot to remain healthy at school. He’ll attend Monday through Friday from 8:30 until noon. I will cart him to the same grade school that Nora attends (she is now entering second grade) and Isaac will hang in the car with us as well. The BUS (gasp!!) will bring Wee E home everyday.

I donated a multitude of sanitary, antibacterial wipes to the classroom. I have discussed with everyone under the sun at school the importance of keeping Elliot ‘disinfected,’ his areas of play clean, and him specifically AWAY from those who are even the slightest bit snotty nosed. But yet, I am petrified. Elliot gets a cold and bam; it’s pneumonia in a week. Then there is the dreaded H1N1 garbage. I am not quite comfortable with the vaccine (or rather series of THREE) that I need to stop reading about.

Unfortunately (or maybe fortunately) Elliot is the only child in a classroom of 16 that has discernible disabilities. He weighs 20 pounds and he’s three; he drinks from an infant bottle (still, only Pediasure…no food); he’s the only kiddo in a wheelchair and he still does his self stimming stuff tapping his mouth. I did see one child that had cochlear implants, but other than that, these children all seemed pretty typical to me – no chromosomal enhancements, no autism, no…well anything that was apparent to the naked eye. I was told that there were five-six children present that had special needs, but I saw nothing other than one dear child with profound hearing loss.

Needless to say, the other kids (and their parents) were drawn to Elliot last night. They all wanted to touch his head and pat him like a baby.

“He’s three like me?”

“Why doesn’t he talk?”

“What’s he doing with his hand?”

“How come his stroller doesn’t look like mine?”

We’ll get through all of that – and Nora will discuss it with her classmates as well. She has a ‘me bag’ and is to bring three items on the first day that represent her – we have a ballet slipper, a mini horse figurine and a note that says “proud sister of someone with Down syndrome.” It will most certainly open discussion up in HER classroom. So proud of her, by the way!

So yes, the only one with disabilities that he wears on his sleeve. He WILL draw the kids in – I have already seen it. He WILL receive an abundance of extra attention. But he will also be a germ magnet and everyone in class will want to play with Elliot – weather sick or not.

Alas, I can no longer keep baby boy home with me…cosseted in his clean little bubble. He needs to learn and thrive and grow, and I admit that I am not a specialist by any means. He will receive PT, OT, speech and some special therapy that they mentioned yesterday with regard to communication. He has his own toy area (that no one else can touch). He has a one-on-one para educator (who lives up the street no less). He has everything that he needs, except me for four hours a day.

Can he do it? Most certainly, YES!

Can I ...?

A strong second!

2009-08-17T07:51:00.002-05:00

Wee E took second in the Blue Bunny Ice Cream contest. That's my boy! Thanks for all of the votes! And, thanks to Tammy for setting this up!

Special Exposure Wednesday: Who says you need cake on your birthday?

2009-08-12T07:29:00.004-05:00

My three-year old is still my baby.

2009-08-07T22:13:00.004-05:00

Happy birthday, Elliot!

Momma still listens through silence.
Momma still reads between the lines.
Momma still waits for you to stand…to walk.
Momma still dresses you in 18-month clothes.
Momma still tries with all of her might to feed you.
And…momma loves it that you are taking your time to grow up.

As all mothers would agree, it is hard to witness their beloved babies take their next precious steps into toddlerhood. Elliot takes his time. His wee brother Isaac is not so tiny anymore. He runs; he speaks; he loves life. And, so does Elliot.

The thoughts of Elliot’s brother surpassing him scared me at first. But now, I appreciate Elliot’s pace all the more. I revel in his accomplishments, but I enjoy the fact that he takes all of the time in the world to complete the things that many take for granted. It is about the small things…and without Elliot; I would have certainly missed (or rather been oblivious to) a great deal.

I am holding on to Elliot’s tempo with all my might. And yes, he’s three tomorrow (August 8), and indeed, has come so very far from his 4-pound, 32-week status at birth, but momma loves the fact that she still sees a baby in a three-year old body. A body, mind you, that has endured so much from a medical standpoint. My kid is a rock. His courage unswerving and his determination…well, nothing to shake a stick at.

God loves you Elliot.

And, so does momma…

Happy THIRD birthday, my precious baby boy!

My, oh MY!

2009-08-06T14:10:00.001-05:00

I logged on to Elliot’s beloved bloggy this morning and half of it was literally missing. Of course, I emailed a certain genius that I know, and low and behold, look what happened! This special person, no…VERY special person asked for a photo or two. She noted that she’d play with the blog a bit and wow, did she ever go to town.

Just look at this awesome blog facelift.

Dear Rebecca is so much more than a blog genius; she is a person with a heart of gold. Many thanks, friend…many, many thanks!

BLUE BUNNY FINALIST

2009-07-31T16:55:00.001-05:00

Wee E is a finalist in the Blue Bunny photo contest. Please go here and vote for my dear boy.

Elliot is #8.

If anything, I can get him to lick some ice cream for a year! Ice cream and Pediasure - pretty good diet, don't you think?

I scream for ice cream!

2009-07-14T20:01:00.007-05:00

I have blogged about Elliot’s oral aversions numerous times. My dear boy is still strictly ingesting Vanilla Pediasure. He has learned, however, that a person has to be nuts not to like ice cream.

He will eat vanilla and only vanilla ice cream, but forget about feeding it to him.

He insists on going at it without the bowl or spoon, and to heck with a cone.

Dear Tammy at Praying for Parker and 5 Minutes for Special Needs introduced a photo contest in conjunction with the awesome brand, Blue Bunny. Go here to learn more.

I headed out today to grab some.

‘Vanilla’ Blue Bunny of course.

Elliot went to town, and while the photo that I am entering is not the messiest of shots, he did manage to splatter the walls and half of the kitchen floor with the creamy goodness.

I will post some of the additional photos, but this one certainly captured Elliot’s love of the perfect treat on a hot Nebraska day!

Wordless Wednesday - Firsts

2009-06-17T08:42:00.001-05:00

For more, go here.

Lessons

2009-06-06T10:46:00.001-05:00

So many learned over the last two and a half years. I’m thankful for each and every one of them. We keep on going.

What I find most compelling about Elliot is that his zest never seems to go away. They have cut his skin, removed parts and portions of his body, sutured and fixed, but always left in tack has been his soul. Completely unscathed.

Smiles each and every morning, while others get up on the wrong side.

Laughter and delight in small things, while many fail to notice.

Disregard for ugliness, deceit. He knows nothing but beauty and candor.

They can make thousands of incisions and it remains: a spirit and character full of life, of fitness and heartiness and health.

I would venture to guess that I’m not the only mother who sees it. Many of our children undergo the procedures, surgeries, pokes, prods…outside skepticism regarding “human ability” to keep going.

Would you not agree? The courage is unswerving…and the smiles remain. Nora says he's an angel. Well, yes, he is.

Many ask “How do you do it?” Funny, I don’t do a thing. He does. I simply watch in amazement. I pray a lot and I witness. Sure, I advocate, but only because he does not have the words yet to do so. The expression, however, advocates for itself.

So lessons – those of courage, of course, the most important!

It's true. REALLY!

2009-06-02T14:34:00.001-05:00

I have become so very accustomed to reporting bad news.

It is almost harder to talk about something positive. But, low and behold, I am in receipt of excellent news.

I was cautiously optimistic on Friday when gastroenterology phoned and indicated that Elliot’s most recent liver function tests were normal. “Normal?” I asked! Normal liver enzymes? I tried not to become too elated. I did not want to jinx the remainder of the tests.

We visited with the most outstanding rheumatologist known to man on Thursday. I loved the doctor. I don’t love many doctors. This doctor was very calming…but very matter of fact at the same time. As I have noted previously, I can now throw bedside matter right out the window. I don’t care just how “nice” the doctors are anymore. Give me the facts, sans any fluff. Tell me what’s wrong and how we can or cannot fix it. This doctor ran each and every test in the book. This doctor asked for a photocopy of my long and very technical diatribe of questions. This doctor took me seriously and addressed each and every concern which I presented him with.

This doctor…get this…

CALLED ME TODAY AND NOTED THAT ELLIOT’S ANA WAS NEGATIVE –

HIS TESTS FOR AUTOIMMUNE DISEASE (INCLUDING AUTOIMMUNE HEPATITIS, LUPUS, A MULTITUDE OF THINGS) WERE NEGATIVE –

ELLIOT, IN HIS ESTIMATION, IS HEALTHY!

Yes, I said it, HEALTHY! They went so far as to tell me that Elliot did not need to be seen in their clinic again. WOW!

I am literally in awe. But…you know me…cautiously optimistic. My son still has liver fibrosis and we do not know what has caused it. Children’s is bringing on a stellar liver specialist in July. We will more than likely run additional tests...run enzyme tests again. We need to know what caused said damage. BUT…

The primary and most logical cause for the damage was autoimmune hepatitis.

My son does not have autoimmune hepatitis.

What I am assuming, the next logical assumption, is that Elliot’s gallstones caused the fibrosis…they “must” have moved out of the gallbladder. They were not present in pathology. Where are they now? Ahh, questions. But, the good news…the best news in over a year of hell…is that Elliot is not suffering from a horrific autoimmune condition; a condition which would have required steroid treatment, leaving him oh so susceptible to infection. No steroids. No hepatitis. Just my boy.

Can we really focus now on teaching our son? Can we focus on his oral aversions? How about we try to teach him to eat…to communicate…to walk.

Can we focus on something other than an autoimmune condition, a strange process where the body attacks itself?

I do believe so. I think I will frame his eleven page lab report. I think I will stare at it in amazement!

I have always said that Down syndrome is “cake.” This other stuff has been hell. Onward and upward for now. Go Elliot GO!!

The missing piece

2009-05-27T09:25:00.003-05:00

Have you ever tried to put together a jigsaw puzzle, gotten really close to finishing it and found that you had lost a piece? The cat drug it away or whatever. That’s where I am at with regard to Elliot’s medical conditions. We have no diagnosis and we keep getting referred to this specialist and that specialist. It’s becoming so infuriating that I’m ready to drive over a cliff. No one has a definitive answer. My child has liver fibrosis (yah, among other things) and that’s nothing to shake a stick at.

And me? I have given up on the Internet and now go straight to medical texts. The Internet can scare a person…scare them because it leaves out some of the fine print…the print that only someone with a medical degree can understand.

The Internet makes a person try to read between the lines and that, I have found, is detrimental to my own health!

It is scary just how much I understand. But really, I am no physician – just a mother with extremely good gut instinct. Something is wrong and I cannot sit still until we figure it out.

I pulled all of Elliot’s medical history yesterday and tried to make some additional sense of it. What’s also scary is just how much our past pediatrician has missed. Better leave that one alone.

I have his MRI of the brain and the spine. I have his neurologist’s dictation; the dictation of his GI; the dictation of the geneticist; the pulmonology reports; his never ending CBCs; the thyroid antibody tests; pathology of his liver…of his gallbladder which he no longer has…I have it all! What I do not have is an answer.

Tomorrow we will head to rheumatology, yet another sub-specialty in internal medicine and pediatrics. I have my list. You know, the list of potential syndromes…potential blood work that needs to be completed…potential diagnoses. This doc is bound to think that I am ludicrous. I’m not. Thus far, my drive and gut instinct has gotten me a hell of a lot further than the pediatrician ever went.

I am beginning to think that all of the issues are somehow linked. It’s not his Down syndrome. It is something else. I’m nearly convinced.

What’s interesting is that Down syndrome is “cake.” If it were only Down syndrome, I’d be jumping for flipping joy. But again, I think it is something very, very complex…very, very rare…and very, very Elliot: my dear medical mystery of a boy! God love him.

Wordless Wednesday - Innocence

2009-05-27T06:41:00.003-05:00

For more Wordless Wednesdays, go here.

Ballet Princess

2009-05-15T11:08:00.002-05:00

Make an on-line slideshow at www.OneTrueMedia.com

I'm a lucky momma...

2009-05-11T08:53:00.003-05:00

So, we tried to take a good Mother’s Day photo to no avail, so instead are some of the outtakes. Ah well, a day in the life. Nora’s ballet dress rehearsal photos also. Such a pretty princess. Elliot seems to be in good spirits. We’ve had a bit of an upset tummy as expected…tubes down his throat, into his stomach and well…you know the rest. His eating (drinking rather) is adequate. We still wait. UNMC should do a good job – liver experts and all. Yesterday I tried to forget all of it and tried to relish in the fact that I have been blessed with three perfect children. I did a pretty good job.

Fibrosis – the medical junk

2009-05-07T08:47:00.002-05:00

According to yesterday’s biopsy result (explained so brusquely to me over the phone) Elliot has liver fibrosis. So, what does this mean?

"Liver fibrosis refers to the accumulation of tough, fibrous scar tissue in the liver. Formation of scar tissue is a normal bodily response to injury, but in fibrosis this healing process goes awry. When functional liver cells are injured due to viral infection, heavy alcohol consumption, toxins, trauma, or other factors, the immune system is activated and the repair process swings into gear. The injury or death of hepatocytes stimulates inflammatory immune cells to release cytokines, growth factors, and other chemicals. These chemical messengers directly support cells in the liver called hepatic stellate cells to activate and produce collagen, glycoproteins (such as fibronectin), proteoglycans, and other substances. These substances are deposited in the liver, causing the build-up of extracellular matrix (nonfunctional connective tissue). At the same time, the process of breaking down or degrading collagen is impaired. In a healthy liver, the synthesis (fibrogenesis) and breakdown (fibrolysis) of matrix tissue are in balance. Fibrosis occurs when excessive scar tissue builds up faster than it can be broken down and removed from the liver."

WHEW! There is also fibrosis in the ports. This is not a good finding!

Elliot has had elevated (mildly elevated) liver enzymes for some time (up and down for some time). He also has a positive ANA (an autoantibody NOT specific to the liver suggesting autoimmune disease). I would suspect that the ANA is present as some “type” of autoimmune disease is present, but hepatitis? We are uncertain. I have autoimmune thyroid disease. My body attacks my thyroid. A person can live without a thyroid gland. I was praying for thyroid disease. The tests for it in Wee E’s body are negative.

But we don’t know if he has the following (LIVER Specific antibodies):
1. ASGPR, anti-asialoglycoprotein receptor antibodies
2. LP, anti-liver-pancreas antibodies
3. LC1, anti-liver cytosol type 1
4. SLA, anti-soluble liver antigen

Elliot’s liver biopsy has been sent to the University of Nebraska Medical Center. There are liver specialists present. Our upper GI doc does not conduct more than two or three liver biopsies per month. The folks at UNMC do. That’s where we’re at.

On another note, Elliot’s gallbladder was sent to the lab as well and get this: THERE WERE NO GALLSTONES PRESENT! What? Either the radiologist who read the initial ultrasound report had his head up his ass (excuse me) or Elliot’s supposed stones were reabsorbed or simply moved into a duct. If indeed they were there and did definitely move into a duct, they COULD have damaged his liver. That would be the ideal situation. But, ideal situations seem to be few and far between where Wee E is concerned.

Generally, I can write with creativity. But today, I cannot. So little to say, but so much time--time to wait for additional tests and additional results--additional pain and additional tears. Despite my empty mouth, the words are in my head, but today, only facts. The fact: Elliot is very ill. In a nutshell, that’s it. Very ill.

Awarded

2009-05-03T15:37:00.005-05:00

Lincoln Public Schools does a wonderful job incorporating the importance of the arts in their core curriculum. And each year, star artists are chosen from each grade school. Nora was one of three first grade students selected this year from her elementary school. The art remains on display at the district office (who hosted today’s reception) for a bit and will subsequently travel to an area business and remain on display for a year. I was a proud momma today. Jeff unfortunately is still at the hospital with Elliot who is nevertheless in great deal of pain. I was happy, at very least, that one of us could dote on our very deserving 7-year old artiste! She’s a gem...and a talented one at that!

Dear Wee E - Update

2009-05-01T22:33:00.007-05:00

I’m home and Elliot resides at Children’s with Jeff. He was looking very weary following the procedures:

1. Gallbladder removal: Surgery performed laparoscopically using 4 small incisions in Elliot’s abdomen. In addition to removing the gallbladder, our surgeon performed a study called a cholangiography: a dye study of the bile ducts. The study used the same 4 small incisions that were used to remove his gallbladder. The purpose of the study was to make sure no gallstones had fallen out of the gallbladder into the main bile duct. They had not.

2. Liver biopsy

3. Upper and lower gastrointestinal endoscopy with systematic biopsies

The findings were interesting. The surgeon indicated that he could not “feel” the stones after Elliot’s gallbladder was removed. They were obviously present on the ultrasound, but who knows. His organ is off to the lab.

His gallbladder was embedded in his liver. It was hard to remove. His liver appeared to be composed of normal tissue and to the naked “eye” through the scope, it looked good, but…it had an “extra lobe.” This shocked the surgeon and while he did not think that this finding posed a problem, he found it to be very odd. That’s my boy! Biopsy off to the lab as well. We wait!

Elliot’s endoscopy series also brought something to our attention that “should” have been caught (on numerous occasions) by our pediatrician and by his ENT. Elliot’s tonsils are so enlarged that they are touching. He has severe oropharyngeal obstruction including: enlarged tonsils, a short neck and a somewhat enlarged tongue. Ding dong! Apnea? Yep, how many times have I also mentioned THAT! We’ll see.

Let’s see. I “think,” unless that I am some kind of a nut, that this (tonsils that is) may be the root cause of Elliot’s difficulty swallowing, hence probable inability TO EAT SOLID FOOD! And how the heck was it missed? So yes, we’ll head back to the ENT. Oh, and zero infection was present. Sure, they could have recently become enlarged, but that is not my gut instinct. Ah well…onward and upward.

I proudly made it through the day. Cried my eyes out as he was taken away, but stopped promptly as I do love his surgeons. Thank you, Rhonda, for helping me maintain a sense of confidence in them (and for the “text.”) xxxooo to you!

High hopes that he’ll head home tomorrow. Hoping for zero right shoulder pain too (gasses escaping). Strange, huh?

My boy is so brave. And, because of him, I’m becoming a bit more valiant as well (day by day).

Thanks for all of the prayers! And, “Michael P.”, thanks for the visit. You’re a love!

…updates following biopsy results.

Scared. Stiff.

2009-04-29T21:14:00.005-05:00

I don’t do surgery. Jeff does surgery.

I have horrible thoughts when he is wheeled away…veering down the hall to go under the knife. They took him away 30 minutes following his grandiose entrance into the world. The ambulatory team took him before I was even made aware of his diagnosis.

That is what I remember and it was horrid. I received his diagnosis over the phone (not even a land line – my dad’s mobile phone) from a revolting neonatologist. The man should not have the title. That’s what I remember.

I can handle all of the post-operative care in the world, but I don’t do surgery.

The tubes.

The wires.

The sometimes inept staff.

It does not bother me.

But watching him going down the hall, out of my sight…it terrifies me. My control is gone; ripped away and he’s in their hands.

I know. Trust.

It is so hard to trust. Too many mistakes, misdiagnoses, etc. have been made.

So, Jeff does surgery. I come later.

Friday, I’m “doing” surgery. For some odd reason (damn that instinct) I feel the need to be there this time.

God help me, please. I can at very least trust in a higher power.

The tree - among other things

2009-04-19T08:57:00.005-05:00

I’m trying to comprehend just why I am so sad as of late. I am surrounded by such beauty.

Case in point: the tree.

I love this tree and each year I pose with the kids and the tree as it blooms. Last year, we had horrid torrential winds and the dear tree lost its flowers before the yearly photos were taken. Yesterday was a gorgeous day, albeit a day where rain was forecast at 80%. Morning rain and afternoon glory. All the glory that spring is supposed to bring.

Isaac and I had our yearly tree photos. Elliot stayed inside. Elliot likes it inside. He is safe inside and I think the association of going anywhere is analogous to going to the doctor / hospital / emergency room is present. In his brain, the association, the sad association, exists. He now throws fits when we get in the car, when we step outside, when we go to grandma’s for Easter. Again, I go back to autistic tendencies. Perhaps to social anxiety disorder. It is not people he is afraid of; it is places. Just as long as people come to us, in our home, he’s okay. He hugs, he maintains eye contact, he plays, he approaches, he loves…anyone who comes HERE. But, step out of the safe zone and all hell breaks loose. I cannot push him in the stroller at the grocery. I must hold him. I had to hold him most of the day on Easter. Heaven forbid that I would have attempted Mass.

So, the sadness. I’m scared and sad for my boy. His surgery approaches. His life of just over two and one half years has consisted of surgery, of procedure, of doctors now who say find another group because your mother is “difficult.”

Will my life now be full of people who find me to be difficult?

Difficult because I advocate for my son who is now so petrified of the world that he cannot step out of our box; my boy who cannot even fathom to enjoy the tree in all of its splendor?

Indeed, I am surrounded by beauty. But, now I struggle to enjoy it for what it is because a part of me, my beloved Elliot, cannot.

I need to help him. I have vowed to help him. I am on this earth to help him. I keep saying that “if you don’t fall down, you cannot get up.”

I suppose I am sad because we keep falling down. “Up” has to be somewhere in the distance.

Bucket boy~

2009-04-14T14:10:00.003-05:00

Elliot has been perpetually enthralled with this tub at my mother’s. I finally let him get in on Easter. He looks like one of those Anne Geddes babies!

Sweet boys of mine...

2009-04-09T14:16:00.003-05:00

May Day will be a good day.

2009-04-03T09:26:00.001-05:00

That’s what I am telling myself.

I have forever loved May Day. Spring has sprung!

Mom and I used to make the beloved baskets. You know; the ones with Dixie cups and pipe cleaners: popcorn in the bottom and M&Ms on top. Nora and I go overboard with our May Day baskets. Only young once, unless you’re me and feel like a teenager in an almost 40-year-old body!

But on this May 1, I might just age another ten years. We repeated Elliot’s chest exam yesterday. He’s cleared for surgery.

This May Day, instead of handing out goodie baskets, we’ll remove Elliot’s gallbladder, biopsy his liver and complete both an upper and lower endoscopy. The surgeons, of course, are also suggesting a gastric feeding tube. “Perfect timing,” they say. I’m more than a little bit leery. Eenteral feeding? Well, he does swallow, so we may be creating a monster…

The kiddo does not eat anything solid; he won’t open his mouth for the spoon, the cracker, not even a lollipop. He generally takes his Pediasure from a baby bottle in stride, but do I provide him with a crutch so he does not feel the “need” to ingest anything?

Personally, (again, momma’s gut instinct) I think that Elliot does not eat solid foods because he is simply in pain. I mean, he’s dealing with an abundance of gallstones. He HAS to be in pain. All adults that I speak with that have suffered with gallstones speak of pain. They speak of appetite loss. They say that in a nutshell they just feel horrible.

I know; we have gone down the road of oral aversions based upon cognitive delay, habitual behavior, even autistic tendency. And sure, Elliot does indeed exhibit some behaviors that are found on the autism spectrum. “He has not LEARNED to eat.” Eating is a learned behavior. But, will he learn if I hook him up to a feeding pump? I don’t think so…

So, what is more important: immediate weight gain or long-term solutions? At a loss.

May 1 is the day. Risk is plenty. But, considering that they have opened up my boy’s spine; he’s kicked the hell out of much worse (you all know the details), I think we’ll be fine. The surgeons are smart. You know me; I can no longer tolerate foolishness.

Nora and I will extend the holiday. May Day will be Sunday for us! Elliot will be home; we’ll have much to celebrate.

My "Wee E" and my Computer

2009-03-28T15:36:00.003-05:00

My boy is home. He’s still very ill, but home nonetheless. RSV hangs on like I have never seen and I suppose it hangs on even worse in a wee one with Down syndrome. I do not wish a combination of RSV/pneumonia and Influenza on the worst of my enemies. The stuff is horrid. Heck, the illnesses are horrid alone, but unite all three and look out! Isaac, of course, is back to his Isaac self. He kicked the illnesses right smack dab in the bottom. The kid is a monster and I love it!

Speaking of illness and infection, my computer is at the doctor getting a dose of something today as well. I’m on Jeff’s system, wondering just how his is so much faster than mine; wondering why he has the new laptop and I use the antiquated one. We bought his as a back-up, and he has taken it over. Transferring my business files, my Outlook email and all of my stuff in general would prove to be a nightmare, so the old hooter is at the shop getting an overhaul. I sure do hope that the computer docs can do their job. We all know how I feel about docs in general lately. I suppose par for the course if the thing is beyond refurbishment.

Back to my itinerary for the day. Perhaps I’ll vacuum instead of trying to work on Jeff’s computer sans my personal stuff. UGH!

The Elliot report

2009-03-22T09:07:00.002-05:00

Outpatient observation has now been upgraded to in-patient status. RSV, Influenza A and yep, another pneumonia. Jeff resides at the hospital; I reside in a robe and jammies at home with Isaac who (bless his heart) is still sleeping at 9 a.m.

They did remove IV fluid. Goal: get him to ingest a wee bit of fluid. Diapers are wet – of course. Funny, the on-call kept saying, “But, Michelle, he has wet diapers…”

Well, sure, you have pumped enough fluid in him to water our lawn on a corner lot! No kidney in the world is gonna hold THAT much fluid!

Temp is stable; sats are up and down. My inclination, regardless of how horrid his cough sounds and how often they whip out that nasty suction machine, that they WILL send him home today.

Again, goal is to drink. I’ll be fine, won’t I, if I can get him to drink…consistently drink? Prayers for a tired momma who is going to be in jammies all day, please? And wow, is it really Monday tomorrow!? UGH!

Elliot's most recent set-back...

2009-03-20T20:25:00.001-05:00

Elliot now has RSV. We are back in-house at the hospital (UNBELIEVEABLE...we made it) as Elliot needs IV fluid. As in typical Elliot form, he is refusing to take any fluid. He feels horrible. Pneumonia seems to be dissipating, but now this which could in turn cause yes another pneumonia. I am literally in awe. Finally, one of our boys is where he needs to be. Isaac received his second Rocefrin shot this afternoon and will receive another tomorrow.

We’re tuned into CNN. Someone tell me why President Obama used such inappropriate words with regard to the Special Olympics. I mean. COME ON?!

I don't know what else could happen?

2009-03-20T12:32:00.002-05:00

Isaac has pneumonia. He is horribly ill.

His respiration increased to over 60 breaths per minute. His temperature skyrocketed to 105 again. His saturation dropped to around 80. But, did they admit him? No. WHAT DOES IT TAKE TO HOSPITALIZE A CHILD?

I called the new pedi who saw him in the morning before his temp hit the roof. Of course, his sats were normal in-house and his fever was low grade. He was sick in her office but not “ill.” She also diagnosed with a bilateral ear infection. She indicated that after the antibiotics kicked in, we would see an improvement. He became worse, so I called our current PCP and Isaac was seen by their on-call doctor and he immediately said “pneumonia.” He received an antibiotic shot of Rocefrin.

We have Elliot’s follow-up appointment today with the current PCP – do note that the new PCP does not want to treat Elliot until after his surgery. I understand, but not completely. Loose ends and all.

To my dismay, the practice administrator with our current PCP called yesterday and noted that they will no longer see us. I, apparently, cannot openly disagree with the hospitalist’s behavior. I, apparently, cannot say it is NOT okay to discharge a child with RSV from the ER without actually seeing him. She told the ER physician over the phone that, based upon his behavior in the ER, that Isaac could go home; after all, he did take a few sips of electrolyte fluid. And now, he has pneumonia, and is MUCH worse than Elliot ever was with his.

We’ll have the follow-up for Elliot’s pneumonia and 30 days if we “need” anything, but I am afraid that Elliot will not be well in that period and I’ll have no one to clear him for his surgery that needs to take place ASAP. He needs a pre-op. Of course, I have excellent relationships with the physicians at Children’s. They phone me personally to check on Elliot. But, they reside in another city. Do I find a PCP in Omaha and say to heck with the situation here locally? Do I drive 60 miles when Isaac or Nora comes down with the flu or needs to be seen for a well-child check?

I have told a few people about the situation and they are all appalled. I’m not a bad person. I merely spoke my mind with regard to our children’s care. I disagreed with a practice physician’s decisions. Do I not have the right to do so? Do I not have the right to question? What do I have the right to do? People say, “Oh, you are such a good advocate.” But look where it has gotten me. I do not have a doctor for Elliot until after his surgery. My son who needs immediate gallbladder removal, a liver biopsy…you know the story, does not have a PCP until after his body is cut into again.

I just want to go away…away to a place where physicians care for their patients…a place where the doctor-patient relationship is still paramount. Does anyone know where I can go, besides back to the side of my children’s cribs to cry?

On a side note, if indeed Isaac is not beginning to improve by late in the day, I WILL make the silly 60 mile trip. And I do believe that a children’s hospital will admit. And if they don’t, well…then I am just illogical, insane, hell, downright mad. It has to be me that is crazy, right? Not them.

Update

2009-03-18T13:26:00.003-05:00

Isaac has RSV. The hospitalist with our current pedi practice refused to admit him. The ER doc’s hands were tied as his chest x-ray is clear and he decided to ingest a bit of fluid while in-house at the ER locally. He turned a lovely shade of blue at home this morning and his temp was 105. Temp in-house at the ER at 101.

So, here we sit at home, and Elliot is at risk. My hands are still tied as all of our children's records have yet to be transferred to the new pedi group. Just phoned them to discuss protocol. I'm trying to get him admitted. I have NEVER been angrier. Never.

Angry, scared, and just plain fed up. My heart is filled with hatred and I don’t like this feeling.

Sickness hits again

2009-03-18T06:50:00.001-05:00

Isaac’s temp spiked last night. He topped off at 104. Petrified? Yep! We were never told if Elliot’s pneumonia was bacterial or viral. I asked for the blood culture results. Think they gave them to me? I’m gambling that it was viral, and had that hospitalist not acted so inappropriately, we would not be dealing with yet another very sick child.

His breathing is rapid; I can hear the wispy, raspy sounds when I place my ear on his chest; he refuses his bottles and food. Seems very familiar. In fact, identical to Elliot’s symptoms, yet Elliot went down hill all too fast.

We’ll head to the pediatrician’s soon and check O2 saturation, etc. However, I will NOT go to our normal pedi. I have all three kids on the books with a new group. As I keep saying, I have had enough of ineffectual behavior. If we are admitted, I so hope we run into the hospitalist. I have words...many words for her.

Prayers for my "pigpie" – aka Isaac?

I think I'm done...

2009-03-15T15:14:00.002-05:00

Of course, the thought has crossed my mind, but I think it is time to take a trip to Mayo in Rochester. A dear friend from high school sent me a note in response to a request. Her father is the best upper GI doc here in the city. Although his practice does not see pediatric patients, I asked for her father’s opinion regarding the complexity of Elliot’s medical status.

“Take him to Mayo.”

He indicated that the physicians at Children’s should oblige. We’ll see. I won't bother asking for the referral from our PCP locally. They will laugh at me and I have had enough of that.

But as things become more and more mysterious, I think we need to see the best of the best. I cannot deal with anymore behavior that I consider to be worse than inept.

Anyone been? Tips for a scared momma?

Bitter momma

2009-03-12T09:17:00.004-05:00

Yea, pneumonia bites. And, it bites even worse when it hits prior to a major (and quite compulsory) surgery that was to be completed Friday. Oh, and what bites even more is a hospitalist who sends your boy home from the hospital after two days of IV antibiotic, not eating sufficiently, and generally, still sicker than sick.

Antibiotic aspiration further exasperating pneumonia? Well, apparently not in her book.

“You’ll get him to take them, Michelle.”

“Come on; you can do it.”

My blood is boiling. The charge nurse indicated that he was not ready to be discharged. The charge nurse talked to the hospitalist. The charge nurse, bless her heart, got no where.

The pedi practice that employs said hospitalist indicated that it was okay for him to be discharged as well. Sure, my child who eats nothing and still primarily refuses his bottle because he cannot breathe sufficiently, hence cannot suck, can easily take compounded antibiotic through a flipping syringe.

“Just bring him into clinic today.”

“We’ll check him over.”

Damn it – it is 16 degrees and my child has a horrible pneumonia. Makes sense to take him out into the cold, hoist both boys into their double stroller seats and make our way into the clinic. Makes a lot of sense, don’t you think?

Hospitalist frequents all hospitals in town, so I cannot simply take him in to another ER. If I have to readmit, I will head to Children’s in Omaha (with all three of my children). That makes sense too, don’t you think?

Oh, and dear hospitalist discharged Isaac at birth sans the results from a thyroid panel. She indicated that I needed to learn how to take care of a “normal” child again. Needless to say, we saw a pediatric endocrinologist for over 8 months due to Isaac’s severe thyroid problems. Smart lady!

So, here we sit...at home, stressed out beyond belief. No surgery Friday, obviously. I should have asked Ms. Hospitalist if she’d clear him for surgery as well. Makes sense…

And so the song goes…

2009-03-05T08:52:00.001-06:00

Have you ever been driving along, or simply sitting in your vehicle, and a song’s lyrics just smack you? I have heard the song over and over again, and, like the masses, I do love Snow Patrol. Truly, though, I have never really “heard” one particular song’s lexis.

I am petrified about next Friday’s procedures. I know the surgeon is stellar. And really, they have to be rock stars in their field or they will not touch my son with a knife. I simply say, “No,” and find someone else. It has to be done that way. He’s just too fragile. Bedside manner is no longer relevant. Congeniality is not a prerequisite, but this particular surgeon excels in that particular area as well. Rare, but true. I’ve learned how to interact with these personality types. They don’t have to be polite (and generally, they are not), but I will not tolerate ineptness (and it has run quite rampant when it comes to our son’s care).

This time though, we’re in good hands and lucked out as dear pediatric surgeon is really quite a doll. But still, organ removal? Organ removal in a two and a half year-old child who has lived through an 8-week premature birth, severe thyroid problems, a pretty risky spinal surgery, has a Dandy Walker variant, has venous hypertension, a compromised airway, and merely weighs in at a not-so-hefty 21 pounds. Nuf said!

So, the song comes on…

Open Your Eyes

“All this feels strange and untrue
And I won’t waste a minute without you
My bones ache my skin feels cold
And I’m getting so tired and so old
The anger swells in my guts
And I won’t feel these slices and cuts
I want so much to open your eyes
Cause I need you to look into mine
Tell me that you’ll open your eyes
Get up get out get away from these liars
Cause they don’t get your soul and your fire
Cause they don’t see what I see in you
Take my hand knot your fingers through mine
And we’ll walk from this dark room for the last time
Every minute from this minute now
We can do what we like anywhere
I want so much to open your eyes
Cause I need you to look into mine…”

Yep, hit me like a ton of bricks as I sat sobbing in the damned drive through line (Indeed; I’m too tired to cook). Pulling up, the poor lad looks at me in horror.

“Are you alright, miss?”

“Um, sure…just a bad day,” I say.

Needless to say, I could not ingest the stupid roast beef sandwich and fries. Just had a glass of red wine and went to bed.

I want it to be over…

ALL

Over!

So...the gallstones, among other things

2009-02-28T18:07:00.002-06:00

I am trying to make light of the situation, but indeed, Elliot’s gallbladder will need to be removed in the very near future. I think that it is warranted as a pancreatic attack is not something we want to mess around with. Even though, I am not crazy about removing an organ (albeit a superfluous organ) from my two year old boy’s body.

While in the general vicinity, we will also conduct a liver biopsy. The antinuclear antibody (ANA) result still leaves the specialists (and me) puzzled, so we need to determine if indeed it is liver related. I’m trying to stay positive regarding the ANA, as it is a non-organ specific autoantibody.

The question remains: What percentage of patients with autoimmune hepatitis present with the above, since it is not specific for liver antigens? We’ll soon find out. In the meantime, I strangely pray for autoimmune thyroid disease.

God bless my boy. Such a hero.

On a lighter note - Some brotherly love

2009-02-23T08:47:00.007-06:00

We are trying to be positive. We are trying to have fun. Wednesday, we'll head back to Children's for additional tests. A dear friend (who just so happens to be a PA) has given me some medical information which has provided me with a bit of hope. She did agree, however, that a liver biopsy should have been the course of action that was taken back in June when this all began. Um, yep. That's what I asked for, but I cannot focus on the past. I am hanging on to hope. I will update following Wednesday's appointment. In the meantime, enjoy some fun photos! Look how blessed we are!

Vocabulary, like it or not.

2009-02-19T08:59:00.002-06:00

Down syndrome. Two years ago, I could not say it. I repeated it over and over in my head, but could not muster the words. Trisomy 21 “sounded” much better, so that’s what I used in conversation. That, after all, was what Elliot was diagnosed with at birth. He had a triplication of the 21st chromosome. Medically, that’s what he had.

After time, I began, however, to embrace the two words. Down syndrome. It began to sound…well, okay. “Down,” inherently, was not a pleasant expression, but really, it was merely the physician’s last name. That’s all…a last name. And Down syndrome is and always will be what makes Elliot unique. Without it, he would not be Elliot.

Other words, or rather conditions, became commonplace, not necessarily associated with Down syndrome, but ordinary nonetheless:

Hypotonia
Hydrocephalus
Dandy Walker
Tethered spinal cord
Laryngomalacia
GERD
others...many others and way too many to list

While I can embrace “Down syndrome” because I have to and now, I want to (and many of the above mentioned because therapy, medication, surgery and treatment can somewhat rectify) I cannot embrace these two:

“Autoimmune hepatitis”

And, while not absolutely diagnosed without a liver biopsy, the blood results are currently consistent. ANA present, etc. I cannot get into those “words” as I have not learned enough about them as of yet. I’ll learn. I always do; like it or not.

We’ll head to rheumatology next week. To rheumatology and to pediatric surgery, as gallstones are also present.

If absolutely diagnosed, we will begin steroid treatment and we will pray. We will pray because, in a nutshell, my dear boy’s precious body will begin (or has begun) attacking his own liver.

I am stoic. Any of my passionate emotions now have to be the consequence of a simple miscalculation in judgment.

Rational. Perspicacious. Those are good words.

And really, it is easier. The tears do not come anymore…

VERY cool - click button to learn more...

2009-02-17T08:48:00.003-06:00

Nothing yet...

2009-02-13T21:56:00.001-06:00

Noting definitive to report. Funny, they rush us in and then take the day off (not golfing, I assume...we have a foot of snow). A nurse from our pedi practice (I had results sent there as well) reported what she was able to interpret. She did not like my questions and sat there with a medical text book looking up answers.

I know:

That there is no portal hypertension;
That his liver is not enlarged; and
That he may have gall stones.

Gall stones? How? Well…haemolytic disease or spherocytosis, cystic fibrosis? Not based upon blood work results, etc. Who the hell knows…

All the odd panels were sent to Mayo. Results not available until mid next week. Keep praying friends. As I always say, Wee E just goes blissfully along. The kid is a saint!

A difference of opinion…

2009-02-13T07:27:00.002-06:00

Elliot and I spent the majority of Nora’s birthday evening at the hospital. Our pediatrician whom interpreted Elliot’s previous blood work results noted that there was NO major cause for concern, indicating merely to repeat liver enzyme labs in a month. Children’s Hospital staff begged to differ. They ordered an immediate abdominal ultrasound. They ordered a:

Liver Panel
AntiSmooth Muscle Antibody
Infectious Hepatitis Panel
GGT
Alpha Fetoprotein
Too many anti-antibodies to list
And many, many others…

For those of you who have followed the blog for a bit, you know that Elliot’s liver enzymes were elevated in June and subsequently came down in September of last year. You know that there was never a cause determined for said elevation. You know that they looked for all Hepatitis infections. They looked for mono – they looked for a lot. They found nothing.

What they did not look for was autoimmune Hepatitis, cancer, and many other horrible things. Radiology will interpret results this a.m. The blood work will be back in a few days. In the meantime, I do need to stay away from the Internet. I’m libel to drive myself over a cliff…

I merely wonder why our pediatrician, whom has treated Elliot for a good 30 months, thinks nothing of a second elevation. Why she did not want to look for portal hypertension with an ultrasound. Why I asked for all of the above mentioned and she told me that I was nuts. Then, the next day, Children’s Hospital orders EVERYTHING, and I mean everything, that I asked our pediatrician to order. And I was to get it done pronto! I think that I missed my calling.

I will post some photos of Nora’s party later. Although I missed dinner, as did Elliot, I made everyone wait at home to open gifts until Elliot and I returned. I wanted to see the look on our precious daughter’s face when she received her American Girl stuff that I so carefully picked out. At least the day ended on a good note. I hope today does as well. Updates following the calls from the docs…the docs whom all claim to be so superior.

Happy Birthday Nora!

2009-02-12T06:57:00.004-06:00

Happy 7th Birthday to my beautiful princess! xo from Momma

Think again.

2009-02-11T14:18:00.002-06:00

Damn it. Elliot’s liver enzymes are elevated again. As before, Hepatitis A, B and C not present. No virus either. His SED rate is also up. I wish they would just run a liver biopsy already. I’m a flipping mess – just a blubbering, bawling idiot! Of course, I start to think undiagnosed biliary atresia. Dear God.

I thought that he was simply being a bit stubborn. I thought that he just hated the spoon. Now, I think, and have that terrible motherly instinct, that he is sick…
I pray otherwise.

Learning and said lessons

2009-02-06T08:59:00.003-06:00

My mind is mush, but my hope is restored. While yesterday’s appointment at Children’s Hospital’s Feeding and Growth Management clinic was long and tedious (particularly with both boys and a husband who was off in never-never land), it WAS worthwhile.

We spent FOUR long hours speaking to a: speech language pathologist; a nutritionist; an Upper GI specialist; a well qualified occupational therapist and low and behold, an EXCELLENT developmental psychologist.

Primarily, I enjoyed the visit with the psychologist, and he was who I was most hesitant about originally. He noted, and quite frankly, that Elliot is NOT autistic. Elliot is moderately mentally retarded. I know this and I knew this. When asked if he treats children that fall on the autism spectrum AND have T21, he firmly stated “no,” and at Elliot’s age, in the doctor’s estimation, it is impossible to diagnose autism, when Down syndrome is present. He saw a social child that has his mind set on not eating. He saw a child whom has never learned how to eat.

Learned. Eating is a learned behavior, and Elliot has simply not grasped the concept of ingesting anything other than Pediasure.

We will take a tough love approach. And, candidly, I am mad at myself for not attempting something like this previously. It all seems so simple now.

Simple!

Meal time:

1. All meals should be 3-4 hours apart.

2. Between meals, Elliot shall NOT have anything – no access to liquid, nothing…

3. During meal time, we will institute a feeding “trial” before allowing Elliot to have his Pediasure and his Pediasure must be ingested in 20 minutes or it will be removed.

4. The feeding trials will consist of 10 bites.

5. Acceptance for Elliot was defined as and successful opening of the mouth allowing me to “place” food in his mouth.

6. A simple command of “open” will be given, with the utensil placed near his mouth for 5 seconds.

7. We are to ignore refusal by keeping the utensil near his lips.

8. If Elliot refuses, spits, etc., we are to firmly state “NO” and turn away from him for 15 seconds.

9. If he accepts the food, HUGE amounts of praise are to be given.

10. I am to place 5 of Elliot's favorite toys in a bin and use them solely for feeding trials.

11. When he takes a bite, or merely allows me (or Jeff – but hey, probably me) to place food in his mouth (swallow or no swallow) he gets the toys for 30 seconds.

12. When finished with the toys, I state “All done,” and remove the toys and go in for another bite.

**I will do this for one week, three times per day and report all findings back to the physician. The trials are to take place in the kitchen, at the table, in his high chair ONLY.

Common sense! We are NOT to force feed Elliot. We are not to place him in a regimented feeding program – 8 hours per day for 8 weeks (as suggested by many a physician). According to the psychologist, this would only traumatize our Wee E even more. I loved this doctor.

On a different note, we ran a: CBC; ESR Westergren; CRP; Chem 14; Amylase; Lipase; Prealbumin; IgE Level and a Vitimin D. We also are checking for Celiac with a specific panel. We will have an Upper GI x-ray; an upper endoscopy; another swallow study and a feeding evaluation. We have to rule out anything medical, but there was overall agreement (between all docs, specialists) that the hypothesis of “Feeding is a learned behavior; Elliot has not learned.” was the most accurate of theories.

So, optimism is back in place. Finally, someone with confidence in our son. Thank GOD! Wish us luck. And, pray that all of the tests come back normal. It is my feeling that they probably will.

Just another bump in the road with Elliot. Many more to come I am certain. But, bumps are just that...bumps!

The small things

2009-02-03T20:00:00.003-06:00

What may seem like an insignificant act to some – a day-to-day, unsystematic act of kindness – can indeed make a difference.

This was brought to my attention by an old high school class mate. Apparently, some twenty plus years ago, I did something nice. I won’t divulge with regard to the details, but she said that I made a difference and she’ll never forget what I did. I don’t actually remember doing what she said that I did, but she does and she made me aware of it just recently and how it gave her a “glimmer of hope.”

A glimmer of hope.

Really, isn’t that what we all need?

It’s important. It is important to smile at the stranger that you pass in the grocery store isle. It’s important to give compliments with sincerity, to both strangers and friends. It’s important to hold the little girl’s hand who is struggling at the skating rink while her friends fly by. It’s important to let the person out into stopped traffic in the huge SUV…the one who no one wants to drive behind. And, it is important that the huge SUV driver waves with reciprocation. It’s important to tell the drive through window worker (the one who makes minimum wage) “Thanks and have a nice day.” It’s important to mean it. It’s important to walk around with a smile on your face. Life is too short to be unpleasant…to poke fun…to think that “do unto others” is cliché. It's not.

We all become so downtrodden with the tribulations of life in general. I know that I do. I cry after our son’s therapy sessions. I get angry at my husband for no apparent reason. I use my car’s horn when someone cuts me off. But really, there is no need. What good does it do to honk out of anger? What good does it do to wonder around aimlessly in our home, cursing under my breath at Jeff for tracking mud into the house? And, why cry about Elliot’s lack of progress? I’m trying. He is trying. And, we all need to try.

The most negligible attempts. Those are what matter. And really, whether we know it or not, they will eventually make a difference.

I had to be reminded of that, and am reminding others in return.

So hey, HAVE A NICE DAY! Really!

Facial Flavors of the Day

2009-01-22T08:48:00.007-06:00

Isaac is such an animated little fellow. He can turn it off and on and boy do his facial expressions tell a story. I can read him like a book…still trying to get a handle on his brother, but we’ll get there.

Apnea anyone?

2009-01-18T08:36:00.001-06:00

No time – but have to throw this out there. Hopefully next week will be kinder to me and I can have some additional time to blog.

Elliot cannot breathe at night. Yep, we’ve done the O2 thing – for over 18 months. I have noticed some symptoms for a few weeks now, but ignored some instincts as I thought that he had a slight cold or a small flu bug.

Last night I listened to him sleep (or try to sleep) for over an hour. He has some SERIOUS apnea – gasping all the while I sat next to his crib. He thrashed all over the place as well. Finally falling back asleep in his upright (leaning against the back crib rail) position.

Yes, to the ENT we will go (again). Anyone…advice?

Just because

2009-01-05T14:24:00.002-06:00

Grandma loves Wee E!

Commerce and "health care"

2009-01-02T09:41:00.003-06:00

Nebraska and America are both faced with the overwhelming problem of providing adequate health care in the face of astronomical costs and increasing liabilities. Many of us are aware that Nebraska is in process of refurbishing its health care system. America’s health care system was the world’s most effective and efficient based on a system of free enterprise and competition. When it was patient-centered and emphasized a close doctor-patient relationship, its rendering was most economical and proficient. Models emulating from a business or political initiative have taught us that it is important to create systems which avoid domination by institutions that promulgate socialistic patterns or foster control by a few who seek to gain power and profit from the “business of heath care.”

The above was taken from a letter which I helped draft on behalf of one of my clients, a prominent physician here in the city. It couldn’t be more appropriate and analogous with regard to what is currently happening with Elliot and his new “diagnosis.”

Indeed, “the business of health care.” Since one physician, spending a mere one hour with our son, has diagnosed him as having autism, we have been shuffled around, placed in some random, (but what they think is an appropriate) order, like a deck of cards.

Following our initial visit with said physician, I have received four telephone calls from outside groups indicating that it is paramount that we be seen RIGHT AWAY. Oh, and it is so hard to get in, “We cannot alter your appointment time.” Supply and demand you know. Sad to say, demand indeed.

As a friend has noted, “The pendulum has swung so wildly the other way. It used to be peds wouldn't diagnose autism because of denial or whatever, and now so many are so quick to diagnose it to get services.”

Services? The only service that I requested was one associated with assisting our son with his food aversion. He does not need to see two different developmental psychologists at the youthful age of two. He does not need another upper GI investigation. He does not need another swallow study, and for Heaven’s sake, “I” do not need a lecture from a nutritionist regarding his other written diagnosis of “failure to thrive.”

My poor babe only refused his Pediasure and lost a bit of weight because his primary care provider neglected to detect his ongoing ear infections. And, while I am on the topic of his PCP, she also abandoned the idea that he may have a tethered spinal cord, dismissed a multitude of his thyroid issues and diagnosed him as having ringworm when it was flipping contact dermatitis! And, in the two and a half years that she has treated him, never once has she mentioned autism. “He’s so social.” That’s all she has said. So, her elder associate, and again, seeing Elliot for an hour, says ‘autism’ and she’s jumping right on the damned bandwagon. Referring us all over hell! Again, “the business of health care.” Where is the close doctor-patient relationship when a patient really needs it? What happened to communication?

What is interesting is that two pediatricians (in the SAME practice) have referred us to different specialists offering parallel services, both in Lincoln and in Omaha. Are they not even on the same page? The specialists have all been appalled when I have noted that “No, the pediatricians have not called to talk with me personally regarding said referrals.”

One group went so far as to request a DVD of Elliot and his behavior prior to his visit. Interesting. I suppose they compile these to present a lecture on dual diagnosis…oh so very specialized! Sorry, not my child. He will not be their guinea pig.

In a nutshell, I have said "no:" no to three of the four referrals. I will visit the feeding clinic because Elliot does need to eat. I will also increase our occupational therapy and speech therapy sessions at the entity we already frequent (they are excellent and do help him). I’ll allow the school system to come in to our home more often to help our child, but I will NOT drive all over hell for evaluations when said evaluations are not warranted at this point. Not on my dime, wasting my time and further traumatizing a poor little boy who merely needs to learn to eat.

Christmas through the eyes of a child, and…

2008-12-28T15:14:00.010-06:00

A momma who received a bottle of “Mad Housewife” cab from my momma. Fitting on some days. I do hope that everyone had a blessed Christmas. We certainly did.

Merriment and sniffles

2008-12-26T08:43:00.002-06:00

Needless to say, Christmas was everything that anyone could want and more, but Elliot and I are very sick. I’ve just called for a script for what I think is the worst sinus infection I’ve ever had. Here’s hoping that my client (who just so happens to be a doctor) does not need to see me, as I really don’t want to leave the comfort of my home today. Elliot has a cold that has hung on for weeks and I do believe he has additional teeth coming. Hence the rash from the drool around his poor little mouth.

Indeed, we all had a lovely day, but my favorite part was snuggling on my parent’s sofa with my Wee E.

I do have a litany of other perfect Christmas photos, but these two needed to be posted first. Such a lover I have!

PS – Isaac was so enthralled with the day that I was not even able to approach him. He tore away…running towards more “stuff” in delight. My parents were way too good to our children. Oh, the gifts…so many gifts in all of their glory!

2008-12-25T04:20:00.002-06:00

Peace

2008-12-23T13:12:00.002-06:00

Posted elsewhere, but well worth re-posting!

Breakthrough

2008-12-22T07:31:00.001-06:00

Two.

Elliot has said two words. We have gone from consistent droning for over three months to “hi” – when spoken to and “maaam” – when I pick him up or approach.

And, he is trying so very hard.

Of course, with all that has gone on, I have been really working with him lately and he’s had his fair share of speech therapy as well. I do know that he’s been “under water” until his ear tubes were placed and really, should have been placed long ago. He now listens intently to Isaac’s speech as well and is trying to mimic him. Little brother has quite a vocabulary: mom, da da, ba, Nora, bye, hi, “la la” referring to his beloved Elmo, ball, dog, kitty, and many others. He’s also moving to two-word phrases.

Literally, just within the past few days, I have witnessed Elliot turn a corner of sorts. Jeff has also been spending a great deal of time with the children as I’ve been busy applying Clinique to faces in the evenings. “Daddy time” has been warranted (and lacking) and although he had to be pushed, I do sense that Jeff is enjoying his extra time with the boys especially. Elliot needed it.

What I have noticed is that one has to really get down on Elliot’s level – plainly right in his face – when speaking to him. That’s okay. I’ll do whatever it takes. His attention needs to be redirected at times as well, and that’s okay too. But, however rudimentary it may be, my boy is trying to speak and communicate his needs via additional body language as well. And, he loves the praise he receives when he does get the words out. Laughter and clapping always follows.

Nothing could make a momma happier…unless, of course, he takes a bite or two of Christmas dinner!

He just goes blissfully along.

2008-12-18T08:48:00.001-06:00

The doctor said it Tuesday.

“Your son is autistic.”

Oh, and “he has Failure to Thrive syndrome as well.”

I expected it. It came from a doctor who exclusively specializes in Autistic Spectrum Disorder.

Our next step will be to head to the Kennedy Krieger Institute in Baltimore. I’m simply not comfortable with a diagnosis of autism coming from a specialist who deals only with autistic children. I asked said specialist if indeed he cared for any children whom were given a dual diagnosis of T21 plus autism. He does not.

There is just too much crossover in behavioral characteristics. We need to iron out the intersections and apply therapy appropriately. Needless to say, I need to take Elliot to a physician who handles a multitude of dual diagnosis cases, and one particular specialist practices at the Institute in Maryland.

While our visit will have to be delayed until the spring of 2009 due to financial constraints, I will not put it off any further than that. Masses of individuals are telling me to just blow it all off and go with the flow. I cannot follow that recommendation as I am better prepared for the future when given definitive answers…as definitive as one can get when dealing with a spectrum disorder, or perhaps lack there of. In the meantime, the Institute has forwarded a 30-page questionnaire regarding Wee E’s behavioral characteristics, his medical health history and the like. I’d rather send a video!

Well, he does not eat solid food. The local physician noted that we’d HAVE to head to Omaha to attend regular sessions at the feeding clinic. The “failure to thrive” you know.

Okay.

He also noted that we more than likely would have to employ the use of a feeding tube at night, restraining Elliot, as we force the liquid down.

No.

I don’t buy that and I will not further traumatize Elliot with the use of restraining measures simply so he takes 6 bottles of Pediasure per day. I WILL take him to additional therapy sessions and he WILL eat, but I will not restrain him in his crib at night with a tube shoved down his mouth to do it.

In the interim, Elliot is just Elliot. Happy as pie.

Elliot does not feel my heartache. He did not see his sister’s tears when the physician said “autism.” Nora associates this term with the young lad in her classroom that bangs his head in anguish and cries for his momma whenever someone approaches. She did not need to hear the physician’s words, but I could not find a sitter. Even Isaac sees it. He pats me when I cry. But…

Elliot is just Elliot. I tell myself that is what matters. My child is happy. He still loves his bath. He still stares at the Christmas tree and smiles and approaches to pull the ornaments off, laughing all the way. He still loves our white Persian cat and giggles when she paws at him. And, he still adores his red hair brush, probably forever playing with it (or something similar) in his special way. It makes him happy. I make him happy. His siblings and father make him happy. Life makes him happy. No matter what the harebrained piece of paper says, my Wee E will embrace life, because he is delighted to be here. That’s what is of utmost importance. My angel baby is happy. And…the descriptive paragraph found at the top of my blog will forever apply.

That's my boy...

2008-12-11T06:46:00.003-06:00

When Isaac doesn’t want to be seen, he lies down, dead in his tracks, and pretends that he is invisible. This behavior is ridiculously cute. Here he is, moments after being reprimanded for yanking Frosty out of the wall and attempting to heave the ornaments that he pulled off of the tree. He’s a handful, but so what. I’d have it no other way!

Lincoln's high school students made my heart smile!

2008-12-10T09:00:00.002-06:00

Students work to stop use of 'r' word
By MARGARET REIST / Lincoln Journal Star
Monday, Dec 08, 2008 - 02:58:58 pm CST

The success of the North Star Student Council’s latest project became abundantly clear to its president, Lindsey Homeyer, during a recent calculus class.

The teacher, a substitute who was messing with a highlighter as she stood at the whiteboard, unthinkingly said, “This thing is retarded.”

The students responded in unison.

“No, it’s ridiculous!”

Right there, in the middle of a discussion about derivatives, was proof: The council’s efforts had made a real difference. Their goal was to redirect students’ (and teachers’) careless — and hurtful — use of what the council dubbed the “R” word.

In today’s high school hallways, the word is commonly used in slang, uttered with little regard to its effect.

“People throw it around like it’s nothing,” said Schyler Hearn, another senior and chairwoman of the project. “We just wanted to put out the positive message that this is wrong.”

The idea came from their sponsor, teacher Mike Musil. The issue — reducing use of the word — came up last year at a national student council conference.

He mentioned it to this year’s council members, and they enthusiastically took it from there.

They came up with “R” word awareness week.

Each day, they decided, they’d make announcements over the loudspeaker, giving students information about mentally challenged people.

They’d try to educate students about how many people there are with mental disabilities, about how many families are affected. And they’d try to point out how hurtful the word is to those who know someone with a mental disability.

They ordered T-shirts for council members and white wrist bands for the whole school that said: Stop and think! Don’t be Re … diculous.

They made pledge cards and decided to set up a table in the lunchroom. Each day, a council member would sit at a table with a small pile of pledge cards and wristbands.

Students who signed the card pledging not to use the word would get a wristband.

Before they started, they gave all the teachers a wristband and sent them an e-mail explaining their plans.

They picked a week in November and weren’t sure what to expect.

They knew it was a touchy subject, and they were afraid they’d offend. They worried people wouldn’t take it seriously, that immaturity would override the message.

They were wrong.

“It’s been totally opposite of that,” Lindsey said. “It’s kept going. I’m very proud of it.”

During that week, 350-some students signed the blue pledge cards, which cover a hallway wall.

Council members would hear students catch themselves mid-word.

“That’s re … diculous.”

The council members didn’t want to be pushy about the issue; they didn’t want to get into their fellow students’ faces about it.

They’re students, too, and they’ve said the word without thinking because it’s the way people talk.

“It’s just a cultural thing,” Schyler said.

Amanda Howard, student council vice president, said she’s been around medical places a lot and had thought about the connotation of the word. But she hadn’t thought much about it.

“I tried not to use it but did, without thinking about it,” she said.

Lindsey said now she finds the word ridiculous creeping into her vocabulary all the time, even when she wouldn’t have used the other “R” word.

The best thing, though, is seeing the campaign’s effects continuing since it ended.

“The greatest reward is seeing people stop themselves,” Lindsey said.

The project’s success has encouraged the council members to continue their efforts.

They’ve still got lots of bracelets. So they’ve called middle school principals to see if they’d be interested in doing a similar project. And they’re hoping it might catch on at other high schools.

The three seniors who spearheaded the campaign say they hope it becomes an annual event at North Star. Students already have suggested other words that could be targeted. Such as “gay.”

North Star is still a new school, Lindsey said, and it’s hard to start traditions. They hope this becomes one, and if it spreads, well, it started here, with this student council.

“Our hope is this becomes a tradition, and everyone’s excited about the word of the year,” she said.

That would be anything but ridiculous. That would be remarkable.

Reach Margaret Reist at 473-7226 or mreist@journalstar.com.

Special Exposure Wednesday - Wonder

2008-12-09T19:59:00.005-06:00

Elliot is in awe of the tree. We sit and talk about the significance of each ornament. He loves our "tree time."

For more Special Exposures, go here.

Information

2008-12-08T06:54:00.002-06:00

So

much

information.

That’s where I’m at currently. There have been so many wonderful people, just in the last few days that are reaching out. I am so thankful!

Sensory…? Perhaps.

Moderate mental retardation overlap? Perhaps.

Social anxiety disorder? Perhaps.

I am brought immediately back to August 8, 2006. Elliot’s diagnosis of Down syndrome was so shocking, but I accepted it and I learned…I learned how to help him and I grew to love the fact that he was blessed with an extra chromosome. But, the difference…the difference was that it was definitive. We knew that his genetic make-up was different, unique and, when reviewing genetic abnormalities, quite common. The research is in place. The therapies are proven.

His health concerns were there and continue to be there. We are presented with new health concerns quite frequently, but physical health and mental health are poles apart.

Autism presents on a spectrum.

A far reaching spectrum.

While we are miles away from a formal diagnosis, I have been armed with new information and new friends and new therapy suggestions…all within the past few days.

The world is a good place, and soon, we’ll find our special place within it…just as we did before.

As Elliot's sister, Nora, stated, "Mom...we KNOW he is an angel...now we only know that he is even more holy."

She's six...and her insight cannot be matched.

Dual Diagnosis

2008-12-05T22:04:00.001-06:00

As in Autistic Spectrum Disorder (ASD) and Down syndrome.

Formal appointment on 12-17.

90+% confirmed with pedi autism specialist (who has a child of his own with autism) today.

A friend is telling me not to believe it and notes that Elliot is much like her daughter (who also has Down syndrome). She says she’s been there (as in an ASD diagnosis that was false) and her daughter is not autistic. She is also a highly respected medical authority.

But...

I’m sick.

That’s all.

Sick.

Let the fun begin.

Oh, and pray if you do.

I feel as if he’s gone…my special little person – the love of my life – now someone else.

So, pray if you do.

please.

Wordless Wednesday - Rub-a-dub...dub

2008-12-03T06:27:00.004-06:00

For more, take a peek over here.

The conversation went something like this:

2008-12-01T17:26:00.001-06:00

Man (in suit with strange tie and slicked back hair): I need a black mascara – LANCÔME, non-lengthening.

Me: Okay, let me see what I can do (flipping out because I don’t know where half of my own products are in Clinique, let alone LANCÔME). And the LANCÔME rep was off for the night.

Man: Well, I have to run over to grab something else, so I will be back in a minute.

Me: Frantically looking for something in the LANCÔME line that does NOT lengthen. Found it. But darn, it’s black-brown, not just plain black. Run upstairs to stock and grab a black mascara for dear man with strange tie.

Man: Oh, yes, that’s the one.

Me: Did ‘she’ need anything else (man was wearing wedding ring)?

Man: Oh, you think this is for my wife; it’s for me (joking tone). I do treat people with that ‘disorder’ though…I’m a psychiatrist.

Me: Well, that’s perfectly fine too (rephrase to “Do you need anything else?”)

Man: Nope; she’s got me trained. I bet you have trained your husband well too, haven’t you? I will go out and get my wife anything she wants. It’s easier that way. (and here’s the kicker) You know, A TRAINED HUSBAND IS SORTA LIKE A FORM OF RETARDATION. I’M KIND OF RETARDED LIKE THAT, YOU KNOW. PERHAPS I NEED SOME TREATMENT.

Me: (stunned that this was coming from a doctor) Oh, like Down syndrome, that type of mental retardation?

Man: (knew that he had hit a cord) Um?

Me: My son has Down syndrome. He’s two. I prefer to use other terms when referring to a delay in cognition.

Man: Well, I’m sorry for that – I was only joking. I’d better get home with the mascara for my wife.

The man was the heck out of there quicker than I could turn around to ask him if he needed a flipping receipt.

I have to say that this ruined my entire night. This man was a professional. A professional who treats people with mental disorders. He ought to be ashamed. I suppose I can “almost” tolerate it when it comes from someone who doesn’t think before saying it (although I generally correct people in that instance as well). But, a psychiatrist?

“The customer is always right.” NOT ALWAYS!

I’m going to go and get myself fired. Do I care?

Thanks and more thanks...

2008-11-27T18:12:00.006-06:00

We had a good time at the in-law’s house today. My mother-in-law went all out with the meal. I have too much to be thankful for!

We tried for a good family shot to no avail, so the turkey leg photographs will have to suffice. The boys were in awe of the almighty leg! Isaac tried to eat it. Elliot? Well, he licked it. It’s a start!

Just me...and my injury

2008-11-19T13:37:00.001-06:00

So, I have a sternoclavicular joint injury. The sternoclavicular joint connects the clavicle with the sternum.

Interesting. Learn something new everyday, huh?

Needless to say, I am thankful that I did NOT fracture the bone, but I have instead torn the joint capsule, hence the hematoma on my clavicle.

Here is some additional fun stuff:

"The sternoclavicular joint is a synovial joint; its joint capsule is subdivided by a fibrous articular disc; it is strengthened by the sternoclavicular, interclavicular and costoclavicular ligaments; the sternoclavicular joint has the range of movement, but not the form, of a ball and socket joint."

Well, there you have it. Injury to this is apparently rare, particularly without blunt force. Here is what dear doc said, “This joint is rarely injured, but it can be problematic when an injury is sustained.” Super great.

I suppose my injury is just about as rare as me living with two competing (and completely opposite) autoimmune thyroid disorders. But, you know. All the more to prepare me for nursing school. Everything happens for a reason; even my silly (yet painful) joint injury!

Surgery complete

2008-11-17T15:08:00.003-06:00

Tubes - in.

Airway - clear. (There should be no issues whatsoever with eating, so go figure.)

And, he's home.

No need to stay over as per pedi ENT.

All is well with Wee E!

Me?

X-ray this morning; awaiting results. Feel like garbage, but my babe is home and that is what really matters.

I've become...well...injured!

2008-11-16T21:28:00.002-06:00

I fractured my clavicle. Can you say CRAP? I cannot move my right arm over my head and forget trying to lift either of the boys – into the car or otherwise. God help me! I can see the bone protruding but not poking all the way through my skin.

I was trying with all of my might on Friday to lift Isaac out of a grocery cart (the large portion of the cart as the seat does not fit in the upper portion) into the SUV (the wind was gusting and it was roughly 20 degrees and I was worried about him freezing his tush off) and I heard a pop. I thought nothing of it and took some Ibuprofen. Needless to say, I was throwing a ball tonight over my head to Nora and it popped again, but this time it REALLY hurt. I have a large scale protruding nodule on my collar bone – huge – numb neck, shoulder and hands all the way to my finger tips. Super duper great!

I cannot worry about it tonight as Elliot has surgery tomorrow. But, I will have to head to the doctor.

Wait.

Do “I” have a doctor?

Well, I have an endocrinologist, an internist and an OB…but no darned GP. Looks like I’ll call one of the others for a referral. Joy!

Momma does not get sick. Momma does not hurt herself. Momma is strong. If all of this is really true, why does Momma want to crawl in a hole and hide? Anyone give me permission to hide for a few weeks?

UGH!

The "art" of communications

2008-11-15T09:54:00.002-06:00

They cancelled Elliot’s ear tube/upper airway scope surgery. I OFICIALLY HATE hospital politics and do you want to hear what I loathe even more? An anesthesiologist who has the audacity to call me and imply, then actually say, that I would intentionally put our son’s life in danger by feeding him before surgery.

What?

Not only do I know exactly what this could do in the form of aspiration, but why oh why would someone (particularly a physician) think that I would lie to cover up Jeff’s miscommunication just for convenience sake. Oh, and she tried to “school” me on proper anesthesia pre-op procedures. My blood began to boil at that point!

Long story short, Jeff got confused as to when our son ate last and told the nursing staff (who, by the way, was to call me with any red flags upon check in because dear hubby simply does not know our son’s medical history like the back of his hand) that Elliot ate at 10:30 in the morning.

Jeff then called me to tell me that they cancelled – without calling me to confirm questions as I had asked previously – and filled Elliot’s surgery spot within minutes. Something smells terribly fishy. Boy, they moved really fast…

Needless to say, back in on Monday morning before 7 a.m. in Omaha! Have to love that! I pray that Elliot stays in good health until Monday, especially since Nora has been vomiting with a 103 degree temp. Jeff now has to take Monday and Tuesday off from work, hence losing his overtime pay for the week.

My questions? Why did the nursing staff and the anesthesiologist lie to me about filling a surgical spot (a 30-minute surgical spot) within a few moments? And, when will they actually follow communication protocol in the patients’ best interests? I consistently bend over backwards for my PR clients – I adjust my schedule to accommodate client calls during the dinner hour; I find sitters to attend meetings; I do an awful lot just to make people happy. I’m just a mom who tries to work at the same time and I treat people like gold. Why are doctors holier than thou? Why are they exempt from the claim that the “customer is always right?” I will never understand it. I suppose that I can see just a wee bit of their point: the point that my husband and I were not on the same page and they could not risk E’s life based upon a communications error. But when they accused me of endangering little E in the name of convenience – that is what set me off. How dare she. How dare…

It's raining, so I am playing

2008-11-11T10:25:00.002-06:00

I saw this site posted on another blog, so thought that I would give it a try. Pretty neat, eh?

Update...

2008-11-09T09:19:00.002-06:00

Elliot has Tonsillitis. This explains behavior, but darn it. Tubes may wait. Another pre-op on Thursday. Poor kiddo. He feels TERRIBLE!

Poor Elliot

2008-11-07T06:32:00.003-06:00

Dear Elliot is off. Off in so many ways. I think (and “think” is the operative word) that he has vertigo related to the unrelenting fluid in his little ears. When in a simple sitting position, he will fall over involuntarily. He isn’t eating again – I shouldn’t say eating, as he doesn’t eat “food,” but he isn’t willingly taking his Pediasure bottles. He only had three yesterday which I forced and he needs at least five. He has vomited on occasion for no apparent reason and his constipation is rearing its ugly head again. This, by the way, was supposed to improve following his spinal release surgery. Oh, and he has his nasty facial rash once more…surrounding his mouth from drool that he has a hard time swallowing.

We have our pre-op this afternoon for the ear tube surgery on November 14. Perhaps dear pedi can shed some light on things. I pray for vertigo and not something else relating to his venous hypertension. Elliot has remained on a low dose antibiotic since his primary visit with the ENT two weeks ago, simply so he stays somewhat “healthy” prior to surgery.

He’ll be fully sedated and scoped as his laryngomalacia (layman = soft larynx) needs a “look see” as well.

And…momma is tired. Tired of PR client needs all day then off to my cosmetic job at night. Now, mind you, I was thrilled when the job was offered, as I REALLY need an outlet. But, it’s HARD. I have an abundance to learn. I attempted to put lip liner on a client last night and was shaking from too much caffeine (up at 5 and work until 10 is not a good schedule). Did I line this person’s lips? Nope – missed by a long shot and had to do it three times. UGH! I know; it will get better. How hard could it be, right? Well, it is hard and the product knowledge is the worst. I know a lot about skin due to my dermatologist client, but the general population doesn’t. So, when I pull out my technical terms regarding anti-aging techniques and retinol based products, people look at me like I am nuts. I need to scale it down a bit and learn how to line lips! Really, though, I am NOT a cosmetologist and never will be. I digress…

Prayers for Elliot please. I’ll update with pedi notes from today when I get a free moment. Love from us…

Outside

2008-11-02T19:25:00.006-06:00

We spent some time outdoors today. Unbelievably so, the temperature gauge read 80 degrees at 4 p.m. It’s early November in Nebraska? Really? The boys were enthralled with the leaves. Elliot tasted them. Enjoy some fall photos!

I got a job.

2008-11-01T17:07:00.002-05:00

A what?

That’s right. A part-time sales job. I will start Monday (with a week of training) to sell the Clinique brand of cosmetics at our local VonMaur. Clinique is said to be “the global leader in allergy-tested, fragrance-free, dermatologist-approved cosmetic applications to skin care and makeup.” Okay.

I do love the product, though, and have used it since I was a teen with troubled skin. My dermatologist recommended it to hide my acne. What’s interesting is that all of the women who will sell alongside me are in their early 20s, and if you don’t know, I’m 38.

I went through three interviews. Yep. For a part-time make-up person. An hour with the HR gal, an hour with the store's general manager, and an hour on the phone with Clinique corporate.

I popped in the store today, a quick 6-block jaunt from our home, to buy some black dress clothing (all sales reps for the brand must wear all black: skirts (appropriate length – of course), HOSE – ick, and closed-toe shoes, preferably heels. I really don’t think my standard attire of clogs and jeans will work, hence I bought some “stuff.”

I approached the Clinique counter to take a peek at the rest of the sales staff. I introduced myself to a nice young lady and indicated that I would be starting with the store on Monday. She said, “Oh, you must be selling fragrance.” I chuckled to myself because all of the fragrance women are at least 50.

I said, “No, I’ll be working with YOU right HERE.” Tee hee. Her boss, the cosmetic sales manager for all lines, approached, and introduced herself. “You must be Michelle.” “I’m happy to have someone with your public relations experience…bla…bla…you’ll make a wonderful addition here.” I laughed again. I don’t think of myself as a professional anymore. I am a mom, and a mom who has three kids, one of whom has special needs. That is my “job.” And, I do still do a bit of consulting, primarily with medical practices and currently with a dermatologist. That, by the way, will help. But, it was refreshing, I must say, to have someone refer to me as a professional. We’ll see.

I have also been accepted into a wonderful nursing program. I paid my $100 deposit, but I have put school on hold for a year. Elliot is still too medically fragile, and I simply cannot devote that many hours to school right now. So, cosmetic sales it will be. Oh, and I get a white “lab” coat. That will have to be close enough for now. I’ll post a photo soon, so you call all laugh at me – or with me!

31 for 21 (#31) The last one! Wow!

2008-10-31T21:41:00.009-05:00

I leave you with some Happy Halloween wishes from our family to your families, but especially from dear Elliot, our wee one who just so happens to have Down syndrome. He wore his horse head with trepidation tonight. Nora wore it in years past (by the way, it talks). His lion costume from last year from dear Pam and her family, unbeknownst to me until today at 5 p.m. when we attempted to put it on, was too small, so we scrambled for something and the horse head worked. The shoes that accompanied the costume and make clip-ity clop sounds when one walks were entirely too big. Nora was a lovely black kitty and Isaac wore Nora’s bee costume from her infancy. Fit like a dream. I wore a smile. And, because of Elliot and my other beloved cherubs, I will always wear a smile!

31 for 21 (#30) In reference to the "T" and the "21"

2008-10-30T21:35:00.002-05:00

Elliot is rockin' his new T21 gear. We have a cute little specialty shop here in town that does custom embroidery on kiddo clothing and things for adults as well. I could not resist this as well as a tee for Nora sporting her name and a peace symbol.

Funny, when I asked the 20-something gal for the letter "T" paired with the “21” she asked if I knew someone with Down syndrome, or if this was for my child. She thoroughly caught me off guard. She said that her sister had Cerebral Palsy, and that she was familiar with quite a lot from a medical standpoint. Familiar indeed. Like I said, I was flabbergasted with her question, but wow, maybe we are doing something to educate.

31 for 21 (#29) ROAR!

2008-10-29T09:22:00.003-05:00

And, I think it still fits this year! Thanks to Pam, we'll be a lovely lion two years solid!

31 for 21 (#28) Extensions

2008-10-28T16:13:00.005-05:00

Isaac and Nora, when comparing baby photos, look like twins. We are always told that they are spitting images of my husband: the curls, the big blue eyes, etc. Nora is starting to look a bit more like me, but for the most part, she’s all Jeff.

But, we have never been told that Elliot looks like either one of us. When people look at him, they cannot help but notice that he has Down syndrome. It is always what they see first. Shallow, but true.

But, if they look close enough, they’ll see his eyes, and they will look into his soul. I can see straight in.

One can only hope, as a parent, that their children will grow up taking on their good traits, becoming extensions (of the good parts) of each parent’s persona. Of course, all children are unique and will develop exclusive characters, based upon both nature AND nurture.

Elliot may not look like either Jeff or me. After all, he looks like an angel (and Lord knows that Jeff and I have our flaws). Matter of fact, I think that Elliot “is” an angel, and rather than worrying about just how he’ll turn out, I try to imitate HIM. When others may see drawbacks or disadvantages, he sees splendor. When others are distraught, he is forever filled with laughter and smiles. Cliché as it may sound to some, Elliot is our gift. And, rather than trying to determine if indeed he’ll become an extension of our worthy qualities, I will forever strive to emulate him: his courage and valor, his sincerity, and, most importantly, his inner beauty. That, my friends, is what it is all about. Because of Elliot, I don’t lose sleep regarding his siblings either! Blessed is an underestimation. We are sanctified with his presence.

31 for 21 (#27) To the doctor - but NOT with Elliot!

2008-10-27T18:50:00.001-05:00

Bad 31 for 21 post, but just popping on to say that Nora sprained (and may have broken) her darn ankle. We literally spent hours at the pediatrician’s today, X-ray and the like, only to get an “I’ll have to consult with an orthopedic surgeon regarding the X-ray,” from the PA that we saw. Of course, EVERY time that I bring Elliot in, they MAKE time in the schedule for him to see a pediatrician.

Nora? Nope! So, we wait – ankle elevated, iced and Elliot thinking to himself, “IT ISN’T MEEE THIS TIME!” Nice change of pace for my boy, huh?

31 for 21 (#26) Puking and a pumpkin

2008-10-26T18:38:00.006-05:00

My little man is ill. Vomiting at Sam's Club late yesterday afternoon. Mind you, Sam's Club is about 30 minutes from our home. We left in a flash. Made it home and he went to the tubby, and immediately to bed. He has kept a bit of Pediasure down today. A bit, but not much. He also managed to roll the pumpkin from the front door entrance to the living room. Oh, and Nora as a cat made him smile. Her smile, however, is missing the front two. Appropriate, don’t you think? And, quite daunting too!

31 for 21 (#25) My heart? It broke yesterday.

2008-10-25T16:16:00.003-05:00

Yesterday was Nora’s fall party for her first grade class. Note – they do not have Halloween parties, nor Christmas parties, nor Valentine’s Day parties, merely fall, winter, spring, etc. Anyway…

I sit on the “room parent” committee, and as said committee person, I am part of a team of mothers who plan these parties. We planned a joyous event. The children had a riot passing the pumpkin, having a sack race (indoors as it was windy with rain) decorating Halloween (woops “fall”) sacks for homemade snack mix, etc. As I said, all the children enjoyed themselves, all with the exception of one dear boy who just so happens to have autism.

This little lad was so dejected, and that is an understatement. Chaos is not in this little boy’s vocabulary, and among the clamor, one little boy (a vital part of the first grade class) was left out and very sad on the floor crying.

How could we have forgotten him when we planned the party? More importantly, how could I have neglected to think about the fact that a boy with autism would be asked to participate in the party’s activities as well? He attends therapy sessions at Elliot’s therapy facility. I have chatted with his mother on more than one occasion. I have “communicated” with him, and when planning the party, I did not remember him at all. Me, a mother of a child who just so happens to have a little boy with Down syndrome, forgot that Nora has a child with special needs in her first grade class.

Needless to say, his aid removed him from the classroom. I approached her and asked if I could work one-on-one with him. “We could decorate a fall sack for snack mix,” I suggested. “No, not a good idea.” “He is beyond return at this point.” So, I made him his own sack with his name to take home. It was the least that I could do.

Later in the evening, I emailed the first grade teacher and asked her to please suggest an activity that Nora’s classmate would enjoy at the subsequent party. She was pleased that I remembered him. I was displeased that I forgot him.

I could not help to think ahead just a bit with regard to Elliot. Would the parents who planned said parties remember “my” son…remember that there was a child in the class who had special needs? Would they plan the activities accordingly?

Will Elliot be able to “pass the pumpkin?” Or, will he throw it in the middle of the circle of children rather than to his neighboring peer? Will he understand the words in the story read to the class? Will he be nimble enough to participate in a sack race in first grade? Will he enjoy himself?

Of course he will.

And, I will never fail to recall Nora’s classmate with autism (or any classmate with any special need) again.