This means war!

Generally I'm not a confrontational person. I won't say anything, I will simply let things fester! Oh how I let them fester, until one day I can't take it any more and ... boom! Granted this is a character fault I've been working on, and it has gotten better over the years... but it is still a thorn.

Now, when I'm having to deal with businesses, this can be tricky. Years past, I simply burned bridges and damned things to hell, never to return to said businesses... but I've learned patience, and that generally the people I'm dealing with are morons whe have no clue and the IQ of my 8 year old and really can't be held responsible. So you have to find the right channel in order to get things done... CORPORATE!

Enter in my current issue... medical bills. Ever since the boys came home, this is a monthly battle for one reason or another... but it all boils down to dr/lab not billing the boys' secondary insurance! I end up spending HOURS per phone call trying to get it resolved... even though they take all the information the day of the appointment (or even before that)... even when we've been there before and all they do is make another copy of the same info... I still end up getting bills that were never filed correctly. It is infuriating. Usually I just make the calls... set my cell on speaker and keep on doing the boys school work, or cleaning house, or folding laundry... whatever, you get the picture. This year I decided to try a few new things.

I'm currently in a stalemate over an appointment back on the second week of January. Every time we use this office, and this lab we have this problem. I know, I haven't learned... but this is Bobcat's endo, and I just didn't want to switch because I knew that we would be tapering off the visits because he was seeing his gastro to take care of the CD. Now I finally resolved the bill with the office after 3 very long waiting phone calls, and then one very to the point email which made it to the director of billing who called to apologize. Sweet, taken care of. I used the same approach with the lab... but to no avail. This morning marked the 5th bill, and the 5th time I contacted them. The first three times were by phone. Each wait time to get an operator was well over an hour! So on the four time I went to their website and left a message on their inquiry form (June 15th) with my phone number and the list of dates I had already spoken to them. NO RESPONSE! This morning, I did the same thing.

After I hit send, my blood was boiling and the wheels in my brain where just a' spinnin! I think a new plan of attack needs to be waged... THIS IS WAR! Since they won't listen, or respond to my once a month calls/emails... I will now log on to their site EVERY MORNING, and send the same inquiry simply adding on the new date to the list. Surely this will get some response, right?

If I had a nickel for every minute I've had to spend on the phone for insurance billing issues in the last 7 years with the boys... I would be able to buy the beach house of my dreams!

Weighted what?

I mentioned in my last post that I sewed a weighted blanket for Snookie, here's a little bit of the back story on that whole thing... blanket information at the bottom!

A few weeks ago we attended a seminar at a local adoption conference on Sensory Integration Processing Disorders.

We've felt for sometime that Snookie is wired just a little different. All three show a few symptoms that fall into the Sensory Integration set of issues... but Snookie most of all. In the seminar they passed out a set of question that would help us understand how these issues most frequently manifest themselves:

Ever Wonder Why Your Child Does The Things He/She Does?

•Do you wonder why they are excessive risk takers - jumping and crashing into anything they can ?
•Why they can’t do puzzles - write well - or find the coordination for riding a bike or hitting a ball?
•Why they cry or cover their ears with every loud sound - even vacuums, toilets or hairdryers ?
•Why they don’t like to be touched or can’t be touched enough?
•Why they will only eat macaroni and cheese and pizza?
•Why they will only wear certain clothes or need you to cut the tags out of their shirts?
•Ever wonder why you can’t seem to calm them down or get them to sleep?
•Why they won’t put their hands in anything messy or use glue, Play Doh, or play with mud?
•Why they fear playground equipment or being tipped upside down?
•Why crowded stores bother them so much leading to major meltdowns in public places?

So what exactly is sensory processing disorder, here's the definition we were given: Difficulty in the way the brain takes in, organizes, and uses sensory information. Information, causing a person to have problems interacting effectively in the everyday world. What's happening: The child's central nervous system may not receive or detect sensory information. The brain may not integrate, modulate, organize, and discriminate sensory messages effectively. The disorganized brain may send out inaccurate messages to direct the child's actions.

Within the world of sensory input world, there are three systems that can be affected... normally they are working together in harmony, but a person have problems with one, two, or all three systems and that can lead to some real stress! So what are the systems?

-Vestibular Sense: Provides us with information about our bodies in relation to our environment. It affects our balance, movement, and hearing. This is where our Fight/Flight/Freeze response comes from. It includes reflex maturation, and inner ear. Stimulation (or over stimulation) comes from the environment.

• Willfulness and uncooperative
• Thrill seeker
• Difficulty remaining still
• Likes/dislikes swings, teeter-totters, trampolines
• Fidgety or clumsy
• Limp when lifted
• Sits in "W" position on the floor
• Has difficulties with digestion and elimination
• Poor fine and gross motor skills
• No established hand preference
• Low tolerance for mental stress

-Proprioceptive Sense: Provides information about our body parts. Affects praxis, calibration, and arousal modulation. Works in conjunction with Vestibular and Tactile Senses. Skin and muscles are its stimulation (or over stimulation) issue. Soothing and calming can come from stretching of deep muscle movement.

• Prefers to remain still
• Picky eater
• Deliberately bumps and crashes into people or objects
• Head banging, nail biting or knuckle cracking
• Tight fighting clothing
• Constantly chewing on objects
• Aggression
• Poor body awareness
• Breaks crayons and pencils (writing with too much downward force)
• Poor posture
• Rigid; sticks to what they know
• Timid or dis regulated in unfamiliar situations

-Tactile Sense: Affects learning, body awareness, calibration, attachment, and social skills.

• Responds negatively to light and unexpected touch
• Dislikes having hair brushed or shampooed
• Over responds to pain or pain agnosia
• Dislikes brushing teeth
• Avoids kisses
• Doesn't like baths
• Avoids walking bare food or walks on tip toes
• Wears warm clothes even in the summer
• Only aware of intense touch
• Poor body awareness
• Extreme

Now, I would say a good portion of these would fit the majority of kids... what they are talking about though, is these things are so prominent that they affect how a child (or adult) interacts with the world.

Alright, back to the blanket (sorry that turned out as long as it did... but I wanted you to have a little snippet of understanding as to how it all works inside you ;-)... one of the recommendations to help calm a child and sooth his sensory system is to use a weighted blanket at night. When we got home from the conference I pretty much went right to the computer to find out more about these things. The website we were given at the conference was: www.weightedblankets.net. After looking at their selection and price, I decided that I wanted to see if I could give it a go on my own! We have several of those fleece blankets around, and it just so happens I have three of exactly the same thing... I thought to myself "Myself, I could use those two blankets as the outer shell... now how would I build it?!" That's when I came across a website (that I can't seem to find) that had an easy pattern for making your own (if anyone is interested in the PDF, leave a comment and I can email a copy to you).

Anyway, since I already had the material... all I needed was the filler. I wanted something washable (there are patterns out that utilize pockets so that the filler can be removed for washing purposes... that's not the direction I went). I went to my local craft store and was able to buy doll filler. This worked out pretty well... as far as getting the right weight (there's a formula for finding the right weight for the person... 10% of body weight plus 1 pound... so Snookie's blanket needed to be 5 pounds).

I completed the project Saturday afternoon, and he has been sleeping with it since Saturday night. Have I seen a difference? Um, I'm not sure. Does he like it? HE LOVES IT. He loves that it stays in it's place (this was one of his biggest problems at night... constantly getting up to try and readjust the blanket so that it was just so). He loves being tucked in tight and not even a sheet around him would stay because he would kick around at night. So far every morning and after nap time he is in the same place he was when I left when he went down, and so is the blanket! So I call it a success!

Update

Well, I took Bobcat back to his endo. to see what else they think might be going on in regards to the lack of height and weight... basically they don't know. So along with the bone density test that his gastro. wanted run, we had another blood test to look for a specific growth hormone marker, and more bone age testing done (x-rays of his spine and hip bone).

This morning I got a call regarding the bone density test... within in normal range... THANK YOU! That hopefully means that we won't have any fractures in the near future! Now we are just waiting on the endo's tests. Those should be back in about two weeks.

REALLY!?

Well, if I thought today couldn't get anymore frustrating... IT DID!

We, well, Bobcat had a follow up with his gastro. regarding his celiac disease. He just past the one year mark for his diagnosis/biopsy and I was convinced that we would get another glowing report... like we got in April at his 6-month check-up. Unfortunately he has done little in the way of growing or gaining weight from April till now... and now he is the furthest he's been away from the growth curve over-all.

The celiac disease seems to be under control based on the blood work which came back completely normal... so now his gastro. is thinking that there might be something they've missed... now we have to go back to the endocrinologist and see if they can come up with anything.

My heart breaks for him, knowing that we will have to put him through more testing trying to get to the bottom of this...

Good news...

The blood work is in, and has been verified... Snookie and Bubba do not have Celiac Disease!

While we are still working hard to keep the house GF, it is nice to know that there are times when those two can have what ever when we are out and about!

Right now we are waiting to hear back from the GI in regards to Bobcat's bone density screening from Monday... and then we are done with testing for about 6 months!

Waiting...

I should have all my mail forwarded to the boy's doctors offices... because they seem to be the only places you will find me these days.

But anyway, I thought I would regale with some of the interesting questions and conversations we had while Bubba had his food allergy testing done. Bobcat was full of questions today!

"Mommy, how do we speak? Where does the sound come from, how do we make that sound?" (Bobcat)
As luck would have it, I know enough about vocal chords and sound to get this one.

"Mommy, how do we hear?" (Snookie... follow up to the previous)
Thankfully I also know a little about the ear drum... serious AP biology THANK YOU!

"Mommy, do you remember the planet that is like this (demonstration) that is blue with a ring like this (another demonstration)?" (Bobcat)
Umm.... does Neptune have a ring (search memory bank... no I don't think so)...

"Mommy, he is talking about Uranus!" (Bubba in some what of a frustrated voice that I hadn't supplied any information in the 30 seconds of looking at the ceiling.)
Thank you Bubba! Um, unfortunately Mommy really isn't the planet person... that is Daddio!
(note... Daddio, they would like you to tell them about Uranus again!)

Then in a very sweet gesture Snookie and Bobcat gave sweet kisses to Bubba who's back was inflamed with raised spots, redness, and itching as we continued to wait for the dr. for an addition 10 minutes after the 15 minute timer had gone off... poor kid, he was a real trooper.

Thankfully once all was said and done only three real allergies existed. The overwhelming reaction was simply because right now his little system is so overloaded that it is ultra sensitive... he had to go 5 days without his allergy meds in order to have this test! So what are his allergies... cantaloupe (which is also one for Bobcat and I know for a fact Snookie as well), barley, and oysters!

Next up for allergy testing... Snookie... oh what fun that will be!

"They All Got Dead"

At least that is how Snookie would say it...

This morning I received the phone call from Bobcat's biopsy... and all the vili were DEAD, and he absotively posolutely has Celiac Disease. We already knew that Thursday of last week when the dr. came out and met me after she performed the biopsy/scope... but it was much more final when I received the call.

We've already begun the process of un-glutenizing our house. A few trace objects are still around because the other two still need to be glutenized for their upcoming blood work and possible scopes... but as far as our purchases and meal prep, we are GF (gluten-free)!

I'm not going to lie and say, "oh this is no big deal" or "not a problem to switch everything over"... cause it's really not that simple. Sure reading labels and not buying things that have gluten in them is somewhat straight forward, but that doesn't mean that the stuff I CAN buy is stuff that I want to buy or know what to do with.

Thankfully Daddio has been very patient and generous to me in my moments of being completely overwhelmed. I'm a creature of habit, and my habit just got kicked in the rear-end. My usual once a week trips to the grocery store have turned into every other day (or everyday) stops because "I didn't realize that had gluten in it and I don't have the right things to make it from scratch without gluten... aaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhkkkkkkkkk."

As always around here, even this has a silver lining... it could have been worse, and it wasn't!

So what am I cooking? Did I completely chunk our old meals out the window and try to build a whole new cookbook... NO! Right now, slowly I'm going through our tried and true favorites and seeing what I need to do to them to make them GF. Once I'm confident in that, then new dishes will be added.

As always, Bobcat is a real trooper. Even today at Daily Mass when I was bummed that there was no Low-Gluten host available, he received the Precious Blood with a smile knowing that at least he can still receive Our Lord! Truly a blessing!

My feelings of being overwhelm and unprepared will pass... as they always do, but until then my posts and thoughts will be SCATTERED!

Time goes by so slowly...

Way back on August 8th we took Bobcat in for a follow-up appointment at his endo's office. That day the visit was with an LPN, and not the dr. for some reason (we weren't told when they made the appointment for us a few month previous to it)... and that was when they had Bobcat's blood tested for anti-bodies associated with Celiac Disease. Now we were quite skeptical, the only thing they were going on for ordering this test was the fact the HGH stimulus testing all came back normal and they have no real reason they could find for him being so small.

The only reason I even agreed to have the test run that day was because it was in the same building and we just had to go downstairs (I didn't have to make a whole new appointment or anything). So we did it and then waited for 2 weeks for the results.

The few places we looked online did mention stunted growth, but also listed a slew of other symptoms he's never had and we convinced ourselves that they (the endo's office) were grasping at straws for some sort of diagnosis... God forbid he be a little short in his life.

At the two week mark we got his results... the antibodies were there (in a high volume) which meant that there was a strong chance he has celiac disease. Next step was setting up an appointment to see a pediatric GI... and that's where we spent our morning today. As of right now we still don't have a firm diagnosis, that will come after Thursday when he has to have an intestinal biopsy done! This scared the bu-jeezes out of me, the information I read online indicated that the child has to be semi-awake and be able to follow simple instructions for this procedure... THANKFULLY THIS IS NOT THE CASE WITH THIS GI!!! Praise God! So they will sedate him, perform the outpatient procedure and we wait a week for those results.

Wait, wait, wait...

I've braced myself that this is Celiac, and that our lives are about to change. I figure if I get my head wrapped around this, come full diagnosis I will have a better handle on it... and if it comes back negative... well great, we just return to normal, no harm no foul. Plus if it is positive then we need to have the other two tested, it's a genetic disorder and most likely one or both of them will also have it (no matter what their results come back as, the house will be gluten-free, but they will need a LABEL on their records for a bunch of other reasons instead of just assuming that they are).

Thinking positively... we've caught it fairly early, and if this is what it is, and we change our diet now... he should see improvement in height/weight within 6 months!!! That's incredible. Not to mention by being pro-active about this we lessen the chances for colon cancer among many other illnesses associated with going untreated! And supposedly this will also help with allergy irritations, and maybe even Bubba's asthma (wouldn't that be something).

So little Bobcat could go from being labeled idiopathic short stature to celiac disease... at least he doesn't need shots?!

Formula 1 Race Car Driver

After exhaustive testing 2 weeks ago (growth hormone stimulus tests), it has been determined that Bobcat can be labeled with idiopathic short stature. And in 4 months he hasn't grown a single inch or gained a single pound (based on their records).

Thankfully nothing is wrong with him. All of his blood tests came back normal, he will just be on the shorter side of the charts (hopefully 5'3" at full adult height). His endo. does want us to consider GHT, but in all likelihood it can't really increase his overall height enough to make the daily injections tolerable (in my opinion). More than likely what would happen would be that his childhood growth would speed up, but he would still top out at the same height.

So now what? Well Daddio thinks he will make a great formula 1 driver. You need to be small and agile, and Bobcat seems to possess those qualities... so that is what he's pulling for. While that would be really cool, there is no height requirement for being a priest either (or a POPE for that matter).

At any rate, we are pleased beyond belief to know that he is healthy... and I don't mind that he will be my spritely boy for a long time!

Progress Report

Homeschooling, while we have had our share of challenges this semester, is moving along quite well. Better than expected actually... and most subjects are well ahead of schedule. When I planned out the semester in December I had each of the boys finishing up mid-May... but thanks to a few days of great attitudes and concept comprehension that exceeded my expectations we are nearly done with everything NOW!

Bobcat

• Finished Handwriting Book
• Finished Phonic Book
• Nearly done with Grammer
• Spelling I'm purposely taking my time so that he is really getting it
• Math is still somewhat of a struggle but that should be finished in the next few weeks (but I plan on Math going throughout the summer with drills, flashcards and activities)

Bubba

• Finished Handwriting Book
• Will finish Phonics by the first of next week
• Spelling (same as Bobcat)
• Math (same situation as Bobcat)

Snookie

• Finished Math TODAY!!!! Yeah little man!
• Finishing up Phonics this week
• Finishing Handwriting this week

Me... well I have goals too ya know. For homeschooling I'm still finishing up my book order list for the next grade levels and working out the way I want to organize them. On the whole I'm pretty much done, I'm just researching some alternative Math programs to see if we can have a better year with Math than we've had the last few years!

On the injury front, I went to my first therapy (evaluation) session on Friday... and it turns out I misunderstood on a previous phone conversation... but I actually tore all three of the ligaments found in the previous post. The very nice therapist said this will mean a longer recovery time because... well, it just takes a long time! I am still very sore, actually the ankle pain seems to be getting worse... because I have daily exercises to help the muscles start to loosen up and those muscles have now become angry with me. But the pain from the RSD (some sort of nerve condition that is causing the bruising and pain found in other areas of the foot, my orth says I have a mild or early stage of it) is starting to settle a little. It went from any weight being put on the foot felt like stepping into broken glass... to now it just feels like jagged gravel! I call that improvement. And the massage they want me doing along with the exercise does seem to be helping... desensitizing the area, that went from feeling like my toe nails were being ripped out after the massage to just feeling like my toes and foot were smashed... again I know it sounds bad, but it happens to be an improvement!

Tonight I have my first of 9 therapy appointments... bring on the pain meds :-).

More pain meds please! (Update)

I had my ortho consult this morning and the nice dr. says NO SURGERY! I do need lots of PT, and a re-evaluation in 2 weeks to check my progress. Hopefully the tear in the ligament will get better on its own and I should be good as new in a few months!

**Update** Actually I have two tears... one in the Anterior Talofibular Lig. and one in the Calcaneofibular Lig (say that twice without screwing it up). My PCP just called to ask how my appointment went and made the comment about the two tears... which the ortho didn't go into any real detail on while we were there.

Long time... no post

That's mostly because I'm supposed to be in bed with my foot up... still. Turns out I have a grade 3 sprain (or 3rd degree... I wasn't paying real close attention as the PA was ever so gently jabbing and pushing on my foot/ankle of Friday). That's right, one week later and was still considered the worst sprain you can have. I called Friday morning a little concerned that the swelling hadn't gone done in one week, and that I still couldn't put any real weight on it, and I couldn't move the blasted thing. Needless to say that wanted to see me right away for more X-rays. Sometimes it takes a week or two for a fracture to appear, so they figured with the lack of improvement that clearly this was a case of fracture. After taking a nice long (touchy) look at my Shrek foot (cause that's what it looks like... including my little toes) she was sure that was the case. After the X-rays I amazed them all by not having any fractures. You would think that everyone would be relieved at this... not the case! Turns out it could be serious ligament damage or even a torn ligament... either way BAD NEWS!

We were then sent to another office for MRI's (yes, plural... I had two... each taking 35 minutes). They started with the ankle. Not a lot of pain, just had to be really still... which is hard when I keep having muscle spasms. Once that series was finished they started the foot section. I thought "no big deal, surely they won't make me move... it can all be done just the way I'm laying." Close, but they pinned my toes down... um UNCOOL. That hurt like a son of a gun... so for 35 minutes I laid there holding my breath, then a big deep breath, then hold it again!

Now we wait... 'til Wednesday when I have a consult with an orthopedic surgeon... yes my friends you read that right... a CUTTER. As luck would have it, the little PA that saw me let this little nugget fly "I've only seen one ankle this bad before and it did require surgery to repair the damage." HA HA HA HA... WHAT? Do I think I need surgery... um, I'm never a very good judge of my own severity... I either think it is too bad, or not bad at all and I can manage. But with this particular situation I really have NO CLUE!

What I do know is that we have our summer vacation booked 8 weeks from now, so what ever needs to happen... NEEDS TO HAPPEN NOW so that I can get over it and be ready to party down on the beach!

Idio.... what?

The last few weeks have been chaotic if anything. We've had multiple doctor appointments, party planning, lack of sleep (thanks to Snookie's late night antics)... and just in general a busy life. One of the medical situations we've been dealing with is Bobcat's size. On Wednesday we received the preliminary diagnosis from the doctor.

Idiopathic Short Stature (Idiopathic Short Stature (also known as ISS) is a big name for children who are short with no known cause. Idiopathic Short Stature is a problem that can be present in both girls and boys. Many causes of short stature have been discovered over the past few years, but there are still factors that are not yet understood. ISS falls into to this latter category. Although the reasons for ISS are not yet totally understood, it is known that the administration of growth-promoting treatments may help affected children. Idiopathic Short Stature is defined as having a height significantly shorter than the normal population (i.e., shorter than 1.2% of the population of the same age and gender), a poor adult height prediction (generally defined as less than 5’4” for males and less than 4’11” for females), and no detectable cause for the short stature.)

Currently his height and weight are below the 3% mark. We took him to the endocrinologist, and they did a work up on him which included measurements, blood work, and bone maturation x-rays (hands to check growth plates). His blood work came back normal, which is good. It shows that there is no disease or illness causing the stunted growth. The bone test showed the bone age to be between 5 1/2 to 6 years (Bobcat is 7 years old). The doctor doesn't feel that this is young enough of a reading for there to be a real change in overall growth in the long term. He was hoping for a reading of around 4 years (which is where Bobcat would fit into a growth chart for a some what small child). At this point the doctor had us schedule a growth hormone stimulus test (we will be doing that on April 1st). It is a 4 hour test done in the endocrinology clinic where they give him a cocktail of drugs to induce the body to produce growth hormone, and then read the levels that his body is producing. They are looking to see if he is producing normal levels or if for some reason his body is only emitting small amounts or none which would explain the small size. Either way, they have asked us to consider growth hormone therapy. As of right now, his doctor is certain that as a full grown man he will not reach the 64 inches (5'4") mark, which qualifies him to receive growth hormone therapy. Right now we are looking into having another endocrinologist evaluate all the findings. We are pleased with our current doctor, but we want to make sure that we completely understand the situation before we proceed with any therapy (if at all)...