Drew Onyx

IEP's

2009-12-01T09:48:00.000-08:00

I HATE IEP's!!!

More details to follow....

Frustrated

2009-11-17T06:25:00.000-08:00

It has been quite awhile since I have posted. Many things going on - good and bad. I will start updating on a regular basis. I need this not only to update followers about Drew (if I have any left), but also it is therapeutic for me.

With that said, I am feeling frustrated about many things. Front runner right now - Drew's lack of communication. He can't tell us what is wrong. Drew has not slept a full night in 7+ months. We have had a night here and there, but nothing consecutive. Drew wakes 1-4 times a night screaming hysterically. We have no clue why. Drew had always been a good sleeper in the past, something has had to have changed, but what? No clue. EEG - no seizures. Neurologist suggested Melatonin - no luck. Then he suggested reflux. We met with Gastro Dr - had Meckles Scan - normal. Had a EGD (scope) - mild irritation in esophagus and stomach, nothing to warrant these episodes. Drew has been on Prilosec, Zantac, Prevacid - no relief. He can't tell us - is he having night terrors? Is it sensory related? These episodes, he is non-responsive, tense and sensory seeking. Again he cannot tell us. Frustrated.

Last week he went a day without urinating. Very, very bad. Is it a kidney stone again? We even increased his fluid intake that day. What was different? Who knows? He can't tell us. Frustrated.

Yet insurance (Primary & state ) won't pay for speech therapy/augmentative communication. We can reapply in January. Gee Thanks. Frustrated.

We cannot get approved for Occupational Services. Drew is a highly sensory seeking child, who can never receive enough sensory input. Who can chew, but chooses not to. The state's reason "Present CSHCS diagnosis does not relate to the service being requested. Submit a letter from an appropriate specialist documenting the medical condition that relates to the service being requested " Drew received services under these diagnosis codes in the past. It is a game that I have to play with the insurance company. It is how they reduce their costs. We are currently waiting for the Neurology to submit a letter. In the meantime, we have lost our spot on the OT schedule. And my son loses out. Frustrated.

Simple little things in everyday life. Petty things I don't have the time or energy to deal with. Frustrated.

Next post I will post pictures and all the good that has happened with Drew :)

Cruisin Drew

2009-11-04T19:15:00.000-08:00

Drew tried the Power Chair for the first time at Therapy on Monday. He figure it out inno time how to make it go. His only issue was the clicking noise the joystick made each time he activated it - it would startle Drew and he would take his hand off the joystick. It took me until the end of the session to grab the camera! The video is of drew doing dougnuts in the hallway!

Quote of the Day

2009-09-28T04:54:00.000-07:00

I promise to update soon. I ran across this quote and it has stuck with me:

"There are two primary choices in life: to accept conditions as they exist, or accept responsibility for changing them." - Denis Waitley

Water Fun!!!

2009-08-18T12:55:00.000-07:00

I probably mentioned this before, Drew is OBSESSED with water. Bath Time, Sprinkler Time, Pool Time - when it come to water he does not discriminate (although the warmer the water the better). I refer to him as a water bug or Scuba Steve (he tends to put his face in the water if he is feeling adventurous), Art loves the pool, and tends to take Drew in most of the time. Me on other hand do not like the pool unless it is at least 90 degrees temperature in the water, something to do in the water, as I cannot relax most of the time. Therefore I am designated picture taker of pool time. Here are some of our favorites this year:

Au Gres Weekend

2009-08-18T12:42:00.000-07:00

Two weeks ago we went to Au Gres to stay at our friend Kathy's parent's cottage on Lake Huron it was lots of fun!! Thank you Kathy for inviting us!! Here are some pictures:

Traverse City

2009-08-18T12:24:00.000-07:00

For the past 3 summers, Uncle Vince & Ciocia Dolly have invited us up for a weekend at their condos in Traverse City. It is a much needed break for all 3 of us and we can't thank them enough for the invitation! Here are some pictures from this year's trip:

The Dreaded Funk

2009-08-18T09:26:00.000-07:00

Sorry I haven't posted in awhile - I am in a really bad funk, that I can't seem to shake. It seems I can't do anything right as a mother, wife, employee, etc. I feel so overwhelmed. I can never catch up. I am always running. I want to do it all, be everything, and I can't. I feel like I am failing Drew. Do I do enough for him? Do I not clean the house and work with him more? Am I researching enough for him? Do I play with him enough?

I receive compliments on what a great job we are doing with Drew, which is great. I guess I am just doubting myself, wishing I could do more to help Drew.

I get this funk a couple times a year and it will pass. It just sucks!! Do I take anti-depressants to get through the rough patches? Many parents of special needs kids take them regularly. Or does that just cover up the real issues?

I have no answers. Thanks for listening to my pity party.

Disney Photos

2009-07-31T09:25:00.000-07:00

Finally got around to printing Disney pics - here are some of my favs:

Knock on Wood

2009-07-21T06:20:00.000-07:00

Drew did not vomit, hurl, spit up at all yesterday!! Hallelujah!! There is a light at the end of the tunnel!!

Granted, he did wake up at 4am, in some kind of discomfort - we were all in a funk yesterday.

Was it taking the diet down a notch? The Augmentin? Don't know and don't care at this point.

Hopefully the massive diarrhea will go away too (I know TMI)...

Drew did very well in PT despite the fact he was exhausted! Did very well following commands. The therapist commented that Drew would be a great candidate for Augmentative Communication. Unfortunately, Drew cannot get insurance coverage through Children's Hospital, the State of Michigan supplemental insurance who would pay for it deemed it not medically necessary. How is communication NOT MEDICALLY NECESSARY to survive? Grrrr.... We can reapply next January. Beaumont who has a new Children's Hospital, does not offer Augmentative Communication at this time. So, right now Drew is screwed in the speech/communication department. He gets one hour a week at school. And I work with him at home when I can.

If anyone knows of any other Augmentative Communication programs that accept CSHCS as payment, please pass that information along.

Still Vomiting...

2009-07-18T18:05:00.000-07:00

Will this ever end?

Still vomiting. Today he went vomit free until bedtime. My poor baby.

Test results came back good - so no acidosis. Which is good. We are still starting the potassium citrate on Monday and lowering the ratio. Hopefully this will help!

Took Drew back to the pediatrician this morning. The Prilosec is not working. Come to find out that Drew has a major sinus infection. No indication-no runny nose, watery eyes, etc. Augmentin was prescibed which is not easy on the stomach.

Hopefully Drew will feel better soon!

Vomit, Vomit & More Vomit...

2009-07-15T05:25:00.000-07:00

Drew has been vomitting since Saturday. The projectile type. Fun times in the Onyx house!!

Drew can't tell us what is wrong, right now it is process of elimination.

Currently he can hold down clear liquids and applesauce. That is it!

First we thought it was the stomach flu - negative

Tuesday I took Drew to the pediatrican (after waiting 1.25 hours - we were finally seen - not going there), we thought that maybe it was reflux as the Neurologist suggested may be causing the seizure like episodes. Prescribed Prilosec - negative (after receiving 6oz of Ketocal shake vomit all of myself and the couch on Wednesday)

My life with Drew is always a guessing game! Due to the fact that every diagnosis he has is rare and he can't communicate with us what is going on. On Tuesday after Drew vomited his applesauce/Prilosec mixture all over a blanket (our house is currently covered with blankets to protect carpet and furniture) I had a revelation. I remember reading about kids on the Keto Diet producing too many Ketones and vomiting. I e-mailed the Nutritionist/Neurologist asked their suggestions.

Wednesday I received a response. Yes, if your body produces too many Ketones the symptoms are - vomiting (check), lethargic (check), facial flushing (check). The Neurologist faxed me a script for blood work to test Drew's electrolytes to see if he is acidotic (which is common with too much ketosis). So off we went to get blood drawn. Drew vomited his Ketocal shake all over me that night. More good times in the Onyx house!

We are still waiting for the results. If the test comes back that he is in acidosis - we can lower the ratio down to 2.5:1 and/or start him on potassium citrate.

Never a dull moment with Drew!!

If they look like seizures, they may not be seizures...

2009-07-12T17:56:00.000-07:00

Good News!!!

Received the results from Drew's 24 hour VMR - they are not seizures!! Some spikes, but no seizure activity.

Drew is still having these episodes that look just like a seizure. Very puzzling. The Neurologist suggested that they could be behavioral – a response to something noxious or reflux is often confused with seizures, especially in kids who are non verbal and can’t say what they are feeling.

Who knows? Drew continues to be a mystery... But a cute mystery!

Past 2 Weeks in Pictures

2009-07-07T06:23:00.000-07:00

Hippotherapy

VMR

Cocoon Swing

(This is a swing that Drew loves in therapy)

VMR Today

2009-06-26T22:33:00.000-07:00

What isa VMR one may ask?

My answer - 23 hours of pure HELL.

Technical answer -

Video-EEG monitoring has two components:

Video: A camera is used to visually record you continuously while at the same time the EEG is recording the brain activity. There is a TV monitor with a split screen in the room; the screen shows your EEG on one side and the video recording on the other side. By using the video in connection with the EEG, the doctors can see exactly what happens physically when you are having a typical spell or seizure. Seeing what happens helps them make a more accurate diagnosis of the seizure type.

EEG: Scalp electrodes are glued to the scalp exactly as it is done for routine EEG. The only difference is that for continuous 24-hour recordings, the glue is stronger and will hold for a longer period of time. (Your hair, of course, must be clean, dry and free of all hair care products.) A computer monitors the EEG recording continuously so that your seizure activity is recorded even if you are not aware of seizure activity. This recording gives the doctors a more accurate count of seizures and allows them to compare what is physically happening with what is recorded on the EEG.

Let me back up. When I contacted Drew's neurologist regarding his potential seizure activity, he recommended a VMR. First available appointment was August 3rd. Too lonng when my baby is having seizures. I was put on the cancellation list, praying for a cancellation. I received a phone call Thursday that there was a cancellation for the next day. I jumped on it and here we are.

Today I packed clothes and toys, Art took Drew to get a hair cut - unless your hair is super short - the glue they use is impossible to get out. Watch Drew get strapped down to the table and scream for 30 minutes while the technician glued the electrodes to Drew's head and wrap him like a mummy. Spend the rest of the day trying to entertain Drew and Art. We are in a tiny space and me and Art are practically breathing on one another. Not Good. We are trying not to snap at one another because we are audio recorded as well. One parent needs to be awake at all times to log any seizure activity that you may see, so you are sleep deprived as well. I am taking the first shift. Of course we have not seen the intensity and frequency of the seizures we have at home- but I do have 5 events logged.

At least I have the Michael Jackson coverage to keep me entertained. I have read through 6 magazines.

It is now 2:20am, I have been awake since 6:30 am yesterday. This SUCKS!!

Spinning=Belly Laughs

2009-06-18T09:15:00.000-07:00

A few weeks ago Grammy had bought Drew a swivel chair from Ikea for his new Big Boy Bedroom. I found out about this chair from Drew's Occupational Therapist who has one for her children. She thought it may help with Drew and his SPD. Last night we finally finished putting it together (it was a process - what can I say?).

Key features:

With the hood pulled down the chair is a secret hiding place for a child.

The fabric lets light in so it is never completely dark under the hood.

Spinning helps the brain sort sensory impressions.

Can be used with a cushion or pad for added comfort.

Result?

Drew ABSOLUTELY LOVED IT!!!! We put some blankets in the chair with him, pulled the cover down and gave him a spin. He started to squeal with laughter!! When he wasn't squealing we was grinning from ear to ear!!

Thank you Grammy!!

I will try and post video later...

Confirmed - Seizures!!

2009-06-17T07:59:00.000-07:00

My worst fear has come true - what I suspected may be seizures are. Drew's Infantile Spasms have changed into Complex Partial Seizures -

http://www.aboutkidshealth.ca/Epilepsy/Complex-Partial-Seizures.aspx?articleID=6975&categoryID=EP-nh2-02f

Yesterday this was confirmed by Drew's Neuro team and others in the IS community. The only way to truly confirm that these are seizures is by an EEG. We are now playing the waiting game to schedule the 24 hour VEEG (or the True Marriage Test is what I like to refer it as).

In the meantime, we have increased Drew's Keto Diet ratio to 3:1. Hopefully we can get seizure control by increasing the ratio. Our other option - medication. I hope it does not come to this.

Right now I am angry. I don't even think anger is a strong enough word to express this emotion I am feeling. It is anger, engraged, furious, hateful all in one. We went a year and a half with no seizures. Why now? Hasn't this child been through enough?

This is a new reaction for me. Before I was sad, but never maddened. I am sad now too, but I am extremely pissed as well. Who do I have to be angry at? I really do not believe that our God is a vengeful God, so I am mad at the world. Everyone, Everything. Period.

Alternative Therapies

2009-06-16T17:53:00.000-07:00

This Summer I signed Drew up for Therapeutic Horse Back Riding and Swim Therapy. I thought Drew would love the horseback riding, especially since he craves any type of movement. Come to find out - not so much. He hates the helmet, is fine petting and sitting on the horse, but once the horse moves - complete meltdown. But it is very good for his tone, so we are sticking with it.

Swim Therapy - Drew LOVES the water. He is a little fish!!

Are These Seizures?

2009-06-16T05:02:00.000-07:00

What I notice is that he will get very calm (no movement), his eyes will roll back briefly, then he will start screaming as you see in the video. This is the only time he makes this noise. When the episode is over he quiets down and continues with his arm movements.

It is hard to get video because they are very unpredictable. By the time I hear it and get my camera, it is almost over. I have noticed these episodes quite a bit after school and/or therapy sessions. Three yesterday afternoon.

Seizure Free?

2009-06-09T10:09:00.000-07:00

Drew had several seizures over the weekend. They were short, 3-5 seconds, but still seizures. I have not seen any since Sunday.

Drew also came down with Fifth Disease - a virus that is going around his school. He developed a rash on his face and arms. Perhaps this is what is contributing to his seizures.

Drew's ketones are high again. Hopefully once the virus has run its course we can go back to seizure freedom.

Drew has become more floppy this past week. Not sitting very long, laying on his back more often. Lord, I pray that he does not regress.

To cope, I have been eating. Not good. Nachos, ice cream, french fries. You name it - I probably have eaten it. I tell myself that it will not make me feel better, yet I still indulge. If I don't stop soon, I will be eating myself into the Plus Size section of the stores. I am already too close to that on a good day!

Yesterday we had a good day going to PT. We did not have a meltdown in the waiting room! This is a first! YAY Drew!! How he acted during therapy is another issue. Baby steps!

Tonight we have OT and Drew's favorite Blue Swing!! Wish us luck!!

2009-06-05T17:06:00.000-07:00

I've read this before, but it is worth posting again.

Moms of SNC (Special Needs Children):….some reflections and even a little humor….

You know you have a special needs kid when….

the pediatrician insists you call her by her first name.

your kid’s accordian medical file is 4 feet thick.

you feel you’re constantly in survival mode.

your medical deductible is met by mid-January.

you go for a highly specialized procedure (e.g., a colonoscopy, an EEG, an MRI), and the tech states “you look so familiar; have you been here before?”

you loathe the “developmental milestones” checklist at the pediatric “well baby” (HA!) visits.

“friends” don’t ask you to watch their kids because they fear you’ll ask them to return the favor.

your child is 18 mos. old and you long to have a book barbeque with your copies of “What to Expect: the Toddler Years” and “What to Expect: the Preschool Years”.

you feel yourself stifling laughter when others complain about their child’s “tragic” ear infection or (gasp!), their ordeal with immunizations or a blood draw.

you find yourself resenting any therapist's criticism of your little one's mannerisms ("fix your legs!" "don't rub your head!" "don't flap, just give a clap!").

your mail carrier must think your home is a pseudo-infirmary based on the bundles of Blue Cross/Blue Shield statements you receive.

your child is 2, and has a “medical resume” of sorts to facilitate succinct meetings with new medical professionals who are taking on your child’s case.

you deny your anger to a counselor, yet you long to create an iron-on tee-shirt that reads: “Screw you! He’s special needs!” (This could also apply to bumper stickers, key rings, personal pens; hey, maybe I’m on to a new merchandising trend!)…

you have a vast reference section under the category of your child's illness (also includes at least 5 three-ring binders with 8-pouch pockets sheets filled with medical business cards and contacts).

the quote “it’s nothing that a little prozac and polo mallet won’t cure” is especially poignant.

you see that doctors are human and insecure when they realize they can’t help your child; ("So that's why they call it "medical practice"; I get it!").

out of respect and empathy, you never turn your head to look at a handicapped person, and you are especially irked when you see people stare.

you understand “McDonald’s Envy” (i.e., kids at McDonald’s playground who do so easily what your child cannot) all too well.

you get excited to meet another parent “in your shoes”, as if another child with the same malady is something to celebrate (?)… (It’s so odd!)

your child’s name is permanently etched on your church’s prayer list, and you are on church prayer lists in at least 5 other states.

upon overanalysis of your childhood, you are convinced that you had the same problem as your child, but to a lesser degree.

Faux Pas:

being overly nice to my kid

ignoring my kid

treating my kid like there’s nothing wrong

Yes, that’s right, you can’t win!!!

The Sunny Side of having a SNC:

a SNC is a “bad friend” filter.

all sorts of medical professionals seem to immediately recognize you when you’re out and about (“all this and fame too!”).

you lose all old neuroses (I suppose you trade them for new ones, but let’s be positive); a clean house, for example, is out of the question.

you gain immediate respect from strangers/friends by your “in-depth” medical knowledge; (aka, a self-taught PhD in the category of Williams Syndrome, for example).

you get to take vacations to many big and exciting cities; “Pack your bags, hon! We’re going to Boston! (Children’s, that is…)”

it's December, and upon analysis of the full year's worth of medical statements, you smile and think, "Gee, for what we pay out in medical premiums and deductibles, I really got my money's worth!" (It's like an all-u-can-eat medical buffet, and you're a hungry, 500-lb. fat person. A more succinct way of stating this is "the all-u-can-eat medical buffet is losing money on me!").

you have a really good excuse for:

complaining

not showering today

being late

being forgetful

being a sloth

maniacal depression

not paying bills

not attending playgroups

not shaving

not attending the company Christmas Party, and all other outside company “fun”

being rude to telemarketers (or, in my case, bill collectors), parents, and spouse

not having sex

being hostile in traffic

in sum, total self-centeredness

you truly appreciate every developmental milestone that your child has mastered.

you realize that your child is somehow God’s instrument (although sometimes it feels like he’s God’s hammer!)

you cash in your innocence for wisdom (or is this a disadvantage?).

you begin to understand the essence of unconditional love, and strive to give it.

In this sometimes dark place, you are able to see more vividly Christ’s face and God’s fingerprints.

The Seizure Monster has returned

2009-06-04T11:19:00.000-07:00

I am very saddened to report that Drew's Seizure Monster has returned.

Last Friday morning while feeding Drew he had one tonic seizure that lasted maybe 3-4 seconds. I immediately e-mailed Drew's Neuro's Nurse and Nutritionist. I then tested Drew's urine for ketones, his ketones (which need to be 80+ for seizure control) were 0. Crap!! No seizures over the weekend - but I had my wisdom teeth pulled, so I was out of comission.

Monday morning another seizure - this time a head drop seizure. Damn it!! Ketones still 0.

My Monday/Tuesday consisted of:

Speaking with Drew's Nutritionist several times

Fighting with Beaumont to release his latest labs we had done in early May to the doctor that prescribed them

After comparing labs his May labs to his September labs discovering that Drew has been in seizure danger for awhile now

Deciding on how much to increase Drew's Ketogenic Diet ratio (the higher you go, the more fat, less carbohydrates you get with each meal)

In the end we decided to increase his ratio by one half. This cut his fruit by 25 grams in one recipe alone. If this doesn't work we can always increase the ratio again.

Drew has been more irritable lately, waking several times in the night, and he seems more floppy.

This F-ing Sucks!!

I pray that we can get the seizures under control before Drew starts to regress again!!!

Welcome to Drew's New Blog!!!

2009-06-03T17:15:00.000-07:00

My last post was October 2008 - YIKES!!

Why so long? I guess life just got in the way and something had to drop off the priority list.

Why the new blog? It has more bells & whistles than what the website has to offer. Please feel free post comments at any time.

What is new with Drew? I will give a summary now and post more details later.

Seizures - 20 months seizure free, until this past Friday. More details to follow.

Diagnoses- Sensory Processing Disorder (SPD) is new, click on the link to the left to read more about it.

Therapy Schedule:
Monday: Physical Therapy and Swim Therapy
Tuesday: Occupational Therapy
Wednesday: Hippotherapy
Thursday: Physical Therapy & Occupational Therapy
Friday, Saturday & Sunday - Catch Up Days

More updates to follow :)