Hello, I'm Still Here

Just wanted to check in and say, "Hi"! I have missed blogging these last few days. I am working on a project that looks like it will turn in to a job!!!! Yeah!!!

Everybody, please pray that this really happens. If it pans out I will be hired as the Grant Administrator & Sr. Manager of Print Media by a local Non-profit. I am helping them with a grant application - actually, I have spent all week writing it for them. As soon as they receive some grant money they will be hiring staff. They want to hire me to write for them (and manage the grants and grant money). I am praying that it all works out. I will keep you posted.

This post was a quick break from the application... got to get back to work. More soon - Hopefully this weekend. Good Night

How to Leave a Comment

Hello All! I have had many of you either e-mail and tell me that you have tried to leave a comment, but couldn't; or to ask how to comment....

I apologize for any frustrations you may have encountered trying to comment. I know the first couple of times I tried to comment on Emily's blogs, I was ready to pull my hair out, with frustration!

FIRST: All posts, at the bottom say, "Comments". Just Click on that link. you can read comments that have already been left, and/or leave one of your own.

SECOND: If you do not already have a Google account (e-mail address, blog site, etc), you will have to register. You will see a link (after you click on 'Comments' that says, "No Google Account? Sign up here." Just click on the link (or, do it from here, right now, click on the blue words - it is the link to the registration page); Then pick a user name & password. Once you have that you can comment (or sign in to comment)

I love the feedback, so feel free to comment whenever you like.

Lastly, if you are checking back for the next entry about Zachary & our Journey, it will probably be the middle of next week before that happens... I have some other things (I will post about them later) going on that need my attention, leaving me with no real time to write.

HAPPY PASSOVER

To any of you, for whom, this applies. Hope you all have a very nice Seder, with family & Friends

Catalyst (The Finale....The Real Journey Begins)

We entered the small office and waited for our appointment. Dr. Hopper greeted us and escorted us to his office (more like a room for a therapy session, than an examination/diagnostic). Zachary found some toys in the corner, next to the couch, and he played. I sat across from Dr. Hopper and presented him with all that I had brought.

He examined Zachary's allergy panel completely dumbfounded! He could not believe the extent or profundity of the test results before him.... he said, 'It is amazing that this child can function at all, given the extent of his allergies!'

As the doctor explained it to me, externally I held back the tears I felt welling up inside... I felt like I was being stabbed in the heart as this Dr. explained to me that the levels of allergens in Zachary's system were 'off the charts'; that the allergens were analogous to terrorists and his immune system to the army employed to fight them. He said Zachary did not have enough "soldiers" to fight the battle that was being waged within his system; so essentially every part of his body was attempting to "fill in", as a means of survival ....thus, overtaxing his entire system!

G-d, only, knows how long Zachary had had allergies that had gone undiagnosed; but I had learned that he had allergies almost 4 months prior to to listening to this man tell me that my precious angel was being attacked by "internal terrorists." I felt angry, I felt hurt (for Zachary), but mostly - as I felt my heart weep, inside my chest - I felt guilty! Guilty that somewhere within me I hadn't known to question what the significance of the results of that blood panel had been... Why had I simply accepted, 'nothing really to be concerned about' as a sufficient explanation to test results???????? I have no way of knowing how long Zachary had been "suffering" in his own body, but now I knew that he had been suffering for 4 months longer than necessary.... I can not begin to describe the ache that I was feeling in my soul, as the doctor continued to talk.....

He went on to explain that it was imperative that I, immediately, eliminate ALL Wheat/Gluten, Dairy/Casein (a protein in dairy), Eggs, Soy, and Peanuts from Zachary's diet.

WHAT?????

I heard the words - they kept reverberating in my head - but I could not process them.... "No wheat"....Doesn't everything have wheat?.... "No wheat, no eggs, no dairy!"????? WHAT???? What's left? What will I feed him????.... "No dairy" , Well, that's OK, he doesn't like MILK much, anyway....WAIT, what about cheese (only one of his favorite foods), ice cream, yogurt???? WHAT????....."No wheat, no eggs, no dairy"????? Is my child ever going to eat again? How am I going to find food to feed him? ....He's so slim anyway, won't he die if he doesn't get enough to eat? How am I going to feed him?....Are there any foods left .....WHAT???????? (all of these thoughts were firing off, in my head, at the same time)..... Wait, am I breathing? I can't "catch my breath" (figuratively).... HOW am I going to feed him....'No wheat, no dairy, no eggs, no soy, no peanuts.... What's left?.....

Then, I started to think (as my heart felt like it would explode with the grief I was beginning to feel for my sweet boy; and the fear that I was beginning to feel - Would I be able to learn how to best care for him? Would I be able to teach him how to care for himself(?)..........

"No wheat & no eggs".... Oh no, that means he'll never have cake again... "no dairy", What's he going to do at a birthday party, when everybody is having ice cream and cake???? Will he ever enjoy a birthday party again?

"No wheat & no dairy" ....... What about Pizza????

"No peanuts"........ What about PB&J?...... "No Wheat"..... What about bread/sandwiches? .......

What about__ ? What about__? What about___?

As we left Dr. Hopper's office, I felt sad, dazed, confused, scared, alone, incompetent, sad, scared, confused..... I was adrift in a sea of uncertainty!!!!!!

Storm Surge Ahead

Silly me!...... I thought all of the stuff up to now - Emergency Rooms, diagnostics, juggling Dr's visits, waiting rooms, confusion, diagnoses that make you revisit emotions you never "invited" for reexamination, symptoms that make you ache - not only for your "baby" and the pain he is feeling, but from your own inability to "make it feel better" - when he is suffering the most, controlling the fear that keeps trying to sneak in..... - WAS the "storm"..... NOT!!!

It turns out the events, up to this point, were not "THE" storm, but merely a prelude to the "storm" that that was about to hit. Not knowing that I should be bracing myself for a "hurricane" type storm, I was not at all prepared when it "hit" and it knocked me to my knees! (and spun me around a few times, too)!

When we went back to the GI, for the biopsy results, I was told that I would need to have Zachary seen by an Allergist. This made sense, given the potential allergy factor of the EED (I say potential, because it is not always the case, if I am understanding the information correctly, that the EED is directly related to allergies;)

This "recommendation" however, brought me to a slight "fork in the road"; and resulted in the 2nd major decision of this journey - the first was the decision to even allow them to do the endoscopy.... Remember, at that point I really didn't believe anything was wrong, and I did not want Zachary to have to undergo an unnecessary invasive procedure; nor did I want him to have to be put under anaesthesia [yet again] unnecessarily. While, as I said, I did not "see" the next wave of storm that was approaching, I did anticipate this "navigational issue", and I had "plotted" my [initial] course.

At the beginning of the school year, I had had a Dr. recommended to me - a Neuropsychologist - who, I was told, looked at, and diagnosed, learning & behavioral difficulties from a Holistic rather than Medical approach. I was told that his first step was to assess for hidden/unknown allergens (this was before we knew about Zachary's allergies) and worked at eliminating the offending allergen(s) from the child's (patient's) diet &/or environment. He came highly recommended and I was told that he often had amazing results. This recommendation had come shortly before I got sick. While I was interested in looking into getting Zachary into this Dr., I had not made it a priority (I already had more on my plate than I could handle and many of those things were, by necessity, a priority). After I got sick, obviously, for many reasons, this dropped way down on my priority list.

Then came Zachary's (suspected) diagnosis. In the week between the endoscopy and the biopsy results I spent much time on-line researching what the Dr had told me he suspected (the EED), but could not confirm without the biopsy results.... Reading that allergies are often the trigger, if not the culprit, of the disorder, and knowing that Zachary had tested positive for allergies - remember, I was told (in October, we were now at the end of Jan./beginning of Feb.) 'not so severe that they were anything I really had to worry about.... - and remembering that "that Holistic guy" dealt w/ allergy issues that were often misdiagnosed as something else (more medical), I had decided I was going to make it a priority to have Zachary evaluated by this guy... 'Maybe there was "something" to those allergies I was told were "nothing" substantial to be concerned about (Boy, would that thought be the understatement of the century!!!!)

So, with the appointment made, and the diagnosis confirmed, I gathered everything I thought to be relevant - the pictures from the endoscopy, the results of the allergy blood panel, the referral from the Neurologist (not previously mentioned), testing/evaluations done by the school, his IEP (Individualized Education Plan), and a few other things - and we were off to see Dr. Hopper….. Not at all prepared for the hurdles that I would have to navigate or the flood of emotions that were about to knock me completely off course.

Unbeknownst to me, I was about to enter a fog so dense it would stop me in my tracks and leave me wondering, “Where do I go from here?”

Esophageal Eosinophilic Disease....The Hidden Rose

So, the Dr. gives a diagnosis and you're grateful that (s)he is not giving news of any number of horrific diagnoses that are possible; and you are fully aware that there is some parent(s), somewhere, that is hearing devastating news about their "Sweet Angel". You take a deep breath, and all you can be is grateful that the news is not worse; but before you have completely exhaled, your own fear, pain, confusion, and questions begin to flood over you.... What is it?, How do we make it better?, How long until he is better?, How does this effect his life? How serious is it, really?... and on and on. As you trudge through the flood of emotion that is taking over, you suddenly feel as though you have stepped in quicksand and begin to wonder how you are going to get out.....

Deep Breath..... Relax..... Breathe...... Focus...... with your feet back on a more solid ground, you take a minute to get your bearings...... Deep Breath!

Being careful to avoid the vortex of emotion that was still swirling around me. I began gathering information (the key to knowledge, right?).

So, even though Zachary's EED is quite advanced and severe, it turns out that it is potentially the least severe form Eosinophilic Digestive Disorders. Apparently the eosinophils can attach themselves anywhere along the digestive tract (Actually, they can inappropriately attach to any tissue in the body) and when they attach at the level of the stomach, or below - , the intestines - kids have trouble keeping food down, they have trouble gaining weight/keeping it on, and they have poor nutritional absorption. While there is always a possibility for the disease to advance and eosinophils to also attach further down the digestive tract. That is not the case now. Now, today, thankfully, it is limited to the esophagus. I take time, every day, to count my blessings, that things are not worse.

I took this "gift" as my first "Ray of Sunshine"; took another deep breath, put one foot in front of the other, and took another step .... Forward, there is more information to be gathered..... Step, Step, Step (more steps conquered).........

What Is It? What Does It Mean?

I will do my best to try and explain what Eosinophilic Esophagitis is, as I understand it, to this point. I am still researching, investigating and asking a lot of questions, to gain a better understanding, myself.

Eosinophils are a particular white blood cell of the immune system that "attack" "foreign bodies" within one's system. Apparently, an elevated count of them can be indicative of allergies.

Zachary had some blood work, for something, done at a visit to the pediatrician, back in Sept. Although it was not what was being tested for, the blood work came back with an elevated eosinophil count, which prompted the pediatrician to order an allergy panel - he was also having some increased problems w/ his asthma, and she thought the allergy panel might shed some light on why. The allergy test came back positive, for several things - some foods, grass, cats & dogs - but I was told that nothing was so severe that it has to be avoided....That was in mid October.

Eosinophilic Esophagitis is the result of, A) an excess number of eosinophils being produced by the immune system, and B) those excess cells attach themselves to the lining of the esophagus (the tube that carries food, after it's swallowed, to the stomach), causing inflammation, which causes the symptoms from which Zachary is suffering. It is a chronic disorder and must be managed, or it can become life-threatening (although the doctor didn't seem to think it was important enough to mention that fact until after he learned that I was trying diet, rather than drugs, to manage it (more on this in "Catalyst - part 3" - a coming attraction).

Most of the websites that I have gone to for information suggest, or outright say, that EED is a rare disorder. Some of the Drs. I have spoken to, however, say that it is a "newly recognized" disorder, that has just begun to be diagnosed, and is becoming more and more prevalent. I'm not sure it really matters, one way or the other... he has it, it effects our lives and we need to educate ourselves, arm ourselves (him) with the knowledge that we acquire and move forward.... the numbers are not significant in what is our present reality! Perhaps, in the future, my take on that will change.... because, after all, numbers mean increased awareness, and numbers mean research and research dollars, I am sure that there are many things that numbers mean; but to me, right now, at this juncture of our journey, 1 is the only number that matters to me... My 1 son, the sweet angle that G-d has entrusted me to protect, has this disorder. I will do everything within my power to learn what is necessary to keep him healthy and happy; and to teach him and provide him with the tools necessary for him to keep himself healthy and happy.


In the future, as I move forward on the path in front of me, I am sure the numbers will come to matter more. But, for now, I am at the bottom of the path/start of my journey. I have posted this picture because I believe it to be a good representation of my journey..... like the picture, I believe that the path, while an uphill climb will contain places of great "beauty" - if I take the time to stop and look around; I believe that it is likely, that along the way, I may stumble; perhaps even fall; I believe that if I do fall, the only way for me to reach the top, is to stand up and keep walking (even if I "wobble" for a while); I believe that while I can not see the top of the path, or know what it will look like when I get there, that it is a place of "light", not darkness"; and I believe that when I reach what I believed to be the top, there will be more paths for me to follow. Those are the things that I believe, the things that I know and have to remind myself of, while making the journey, are, that along the way it will be important for me to stop - sometimes frequently -to catch my breath; maybe even stop and rest for awhile, to regain my strength, so that I can continue on; but most importantly, what I know is that I can't "take" the next step until I am able to "conquer' the first step.

Catalyst (part 2)

Look at this sweet, happy, charming boy (I love this picture) with one of "his" Mower Girls (Meridith, at her wedding reception - Aug.'07 .... Hey Mer, like how I used "your" colors"?).

To look at him, one would never guess - or even suspect - that there was a "war" being waged inside that little body. A war, that we now know, he was loosing.... more and more every day. A war that we are gaining the "intelligence" and acquiring the "weaponry" to fight; but a battle he will have to be on guard to fight, for the rest of his life, if he wants to keep his "attackers" at bay.

I ended my last entry with our first visit to the GI. At the end of that visit the Dr. had scheduled an Upper GI, and told me that, more than likely, he would need to do an endoscopy, as well.

The Upper GI was performed the 1st week of Jan. - Zachary was a "champ"! The Radiology Tech & the Radiologist, were both amazed. They both commented that Zachary did better than most adults who have to have the procedure (sadly, it came as no surprise to me. He has been through so many procedures over the years, that he just takes them in stride). There were no significant findings, as a result of the UGI - no obstructions or abnormalities - so the endoscopy was scheduled.

Now, to be perfectly honest, I went into all of this (probably for the first time ever) thinking the Dr.'s were "waaaayyyy" over reacting! I kept thinking of all the times there was a lot wrong and I couldn't get anyone (i.e., his Dr.'s) to listen to me! Now, all the sudden, there is probably nothing wrong, and everyone is jumping through hoops to try and find a diagnosis.... I thought, 'how backward!'

So, you can only imagine how taken aback I was when the doctor came out and, not only told me that there was something (actually several "somethings") wrong, but that his conditions were quite severe. For weeks, every time I looked at the endoscopy pictures, I would get choked up (and sometimes, actually cry) because, to look at the visual of what was causing his pain and discomfort looked so painful that it actually made me hurt, physically. All I could think was, "My poor baby!"..... feelings that had, at one time, been as familiar as his name, or the touch of his infant skin when bathing/dressing him; but had long since become a distant memory......

Part of the diagnosis would require waiting a week for biopsy results; but what was known, immediately, was that he is definitely suffering from GERD (Gastro-Esophageal Reflux Disease) - whether it is still, or again is not known; as a result of the GERD, he had about 2-3 dozen ulcers at the base of his esophagus; and he had extreme inflammation and abnormal looking tissue that ran the entire length of his esophagus.

The biopsy confirmed the diagnosis that the doctor suspected. Zachary was diagnosed with a chronic, auto-immune, digestive disorder -Eosinophilic Esophagitis (EED).

With this diagnosis came a few answers.... it was/is the EED that was causing his swallowing difficulties (which had become more frequent) and the episodes of severe stomach pain, that he was having (which, the first few times it happened, were so severe, and came on so suddenly, that his complaints seemed consistent with an appendicitis); but has opened the door to many questions......

The Real Catalyst to Blogging (part 1)

As you all know, this is the "Ultimate Rose" in my "Garden"

The ANGEL in my heart and the LIGHT in my LIFE!

Any of you you who have known me for a long time, know what a tough start my little angel had.

When he hit about three years old he seemed to have pretty much outgrown all the [major] health problems that he had, that [seemed to be] related to his prematurity. A few things lingered.... His immune system was not equal to that of his peers - he would catch things more easily and get sicker, than other children - but they were "normal" illnesses of childhood (not "bizzaro" diagnoses that no one had ever heard of); His stamina was not (and still is not) quite what it seemed that it should be, relative to other kids his age (to watch him, you would not necessarily know that he is over tired but there are subtle signs that I recognize); and he was diagnosed with Asthma (but that is the case with a lot of kids these days).

Overall, he had grown into a happy, [relatively] healthy, sweet, very bright, compassionate extremely personable, pre-schooler, and we seemed to be done with regular hospital visits, surgeries, and anything but typical, regular, visits to the Pediatrician.

I knew I had (and still have)

MUCH to be grateful for!

Over this past year, however, we have returned to some of those past haunts.... regular visits to [many] doctors, emergency rooms, diagnostic tests & waiting for the results, hospital waiting rooms, post recovery rooms, worry, concern, (sometimes some [slight] fear).... All places I hoped neither of us would ever have to visit again.

It all started (although we did not know it at the time) last March ('07). We were out to dinner one night and in the middle of eating, Zachary said, "Mom, some thing's" stuck." I figured something just went down wrong and it felt uncomfortable.... no big deal. I walked him through the steps to try and clear the food that felt "stuck", which resulted in him vomiting. Many hours later he still could not swallow anything. Every time he tried -even water - it came up.

Worried, I took him to the ER. They - no big surprise - found nothing, and said that he had probably just irritated his esophagus. It made sense with his symptoms (and my background doing Dysphagia (swallowing) Therapy) and I really didn't give it much of a second thought. Until, 8 or nine months later, when it happened 2 times -less severely - in less than a week. I still was not overly concerned. I figured that he was probably just eating too fast, or not chewing well enough. But, it just so happened that we were in the pediatrician's office, for something, shortly after these (minor) episodes; so, I asked her if it was something I should be concerned about.

She felt that it was significant and referred us to a Pediatric Gastroenterologist. That referral, it turned out, would be the beginning of the journey on which we have now embarked......

A Few Layout Changes

If this is not your first time "checking in", you may notice some changes to the margin.....

Because I posted a picture that was both, Zachary & I, he thought it should say "About Us, rather than "About Me" (wish granted).

While this is MY Blog, it is about both of us, so I thought it only fair, since it meant so much to him, to include him in the "Profile" info..... He grinned from ear to ear when he saw it (wish I'd captured it with the camera, so you could all share in his glee.... (if you know him at all, I am sure you can imagine a picture that comes pretty close to the real thing).

The "Crystal" of Change

In my first entry I said that my decision to start this blog involved 3 intertwined things.... Emily's amazing blogs, the therapeutic element that writing has for me, and events that have resulted in completely altering our lives and how we have lived them, to this point.


It is that 3rd element that is truly the catalyst for my blogging. The purpose, at least right now, of this blog is to serve as a tool for keeping me focused on the "roses", so that I do not get lost in the quagmire of change, emotion, learning, adjusting, and more, that is our life right now.


As many of you know, this past October, a week before Halloween, I suffered an episode of moderately severe respiratory distress, as the result of an asthma attack. I was rushed, by ambulance, to the hospital, where I spent 6 hours undergoing breathing treatments and diagnostic tests. It was determined that it was just an asthma attack - nothing more serious. I truly thought I would be back on my feet within a day or 2. Well, it is 5 months later and, for the most part, my lungs have not recovered. I am unable to do the most normal of everyday activities... I become completely winded just transferring a load of wash from the washer to the dryer (and that is on a good day). As a result, I have been unable to work - which as I am sure you can imagine, has resulted in much frustration and stress (among other things).

The end of January I began to notice some slight improvement - my stamina was increasing, ever so slightly; but, the beginning of Feb. (after taking several balloon jobs) I got an Upper Respiratory Infection, which put me back to square 1. It was several weeks before I had any stamina at all and all my breathing became very difficult.

Zachary went away for Spring Break, and I used the time to just rest and not do any running around. As a result, I have noticed some improvement over the past couple of weeks (as long as I really limit my activity). I am waiting to be approved for the drug Xolair (It is my understanding that you have to meet many criteria to be approved, by the drug company, to be considered a candidate for it's use); which my doctors seem to think will be the "magic bullet".

It has been a difficult adjustment for me. At first I kept thinking -everyday - 'tomorrow I'll be back to myself'. ' As a result, I began to let the "condition" run my life; and when it became apparent that "tomorrow" wasn't coming any time soon, I found myself fighting depression.

Towards the end of the year, it became very clear to me that I had 2 choices: I could either let my health define me and be swallowed up by the depression that was, ever so subtly, setting in (and taking hold) OR I could accept that, at least for the time being, I would have to adjust to a "New Normal" and reclaim my life, as it was. Intellectually I chose the later. In reality, however, it is a struggle, on a daily basis, to follow that path. It is an adjustment to many things - emotional, physical & financial -and although my goal is "acceptance", I must admit, that there are many days that I do not accomplish it. But, to be fair to myself, there are also many days that I do.

My health issues, it turned out, were only the beginning of many changes that were about to descend upon Zachary and I. Zachary, as it turned out had some fairly significant health issues of his own - diagnosed in mid/late January - that are the true catalyst for my decision to start blogging (as a means to preserve my sanity)......... (to be continued)