I scream for ice cream!

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

For more, go here.

Lessons

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!

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

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

For more Wordless Wednesdays, go here.

Ballet Princess

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

I'm a lucky momma...

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

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

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

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.

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

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~

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...