TSC Family Symposium

It's here!
The Alberta TSC Family Symposium. 
I am so excited!!!!
I am so nervous....and emotional.  (Wacko...I knoooow.)
If only I wasn't going alone...with the boys....*sigh*....Oh well....


But HEY!!! 
Dr. Thiele!!!
Other TSC families!!!!
What more could a girl ask for?!

TSC Tuesday - Red, red Facial Angiofibromas

Bups sweet face is marked with the butterfly markings of facial angiofibromas. One of the many markers of TSC.

It's been noticed by myself and his teachers that during or after seizure activity, these tumors are so prominent. They are red, and even more raised.
Also, they seem to be spreading.

When R is sick, feverish, under the weather...well, there's no hiding these little bumps at all. They just jump right out!

Any TSC mom's find the same? That during and immediately after a seizure the FAs are very obvious?

R's poor little face. Makes me sad and want to kiss him and scrub him and lotion those sweet cheeks until they disappear.

 If only it was that easy....

TSC Tuesday - Have you hugged your Pharmacist today?

The quest for a topical ointment to treat R's facial angiofibromas has taken  a positive turn. Thanks to a kind pharmacist in Edmonton at the Strathcona Prescription Centre. Oh, if it wasn't a 3.5 hr drive I would hop in my vehicle, race up there and hug her!

{For all you Calgary readers....maybe Edmonton isn't so bad? (There's always been a rilvary between the two cities, you see.) The Calgary compounding pharmacy did NOTHING to help us. NOTH-ING. Anyway.....}

Miss R, who has never met us, went above and beyond by researching TSC and Rapamyacin (or Rapamune).  Because the Rapamyacin ointment is extremely expensive....uh, $3000 per month based on the prescription and strength that the dermatologist wrote.....Miss R researched other comparable meds that are not so cost prohibitive.

Can you hear the angels singing? Hallelujah Halleeeeeluuuuuuujah!!!!

Based on Miss R's findings IF the med alternative is appropriate it, the cost would go from $3000 per month to $400 per month. Hot damn!! It's still a lot to swallow, and our little family may be eating less coconut ice cream and more home made stuff, but oh well. Bup's cute little face will benefit from it as will my tucas.

So, what is the other med compouned into an ointment options?
Sirolimus
Tacrolimus or Prograff

NOW....to meet with the dermatologist for a rewrite and another consult.

TSC Tuesday - Lottery Day!

We won the TSC lottery!

Well, not really, but it feels  like it.

Today our post man delivered an invitation to a TSC Symposium , taking place here, in Calgary, in May. Dr. Elizabeth Thiele and Dr. Peter Crino will be there.

Hallelujah!

Seriously....I am so EXCITED!  I feel like we won the lottery.

TSC Tuesday - Rapamycin Quest

The quest for Rapamycin continues.......and now I laugh;  laugh in the face of our medical system, laugh at medical care for all........that does not include topical meds.

I shall laugh like a maniac so that I truly do not lose my mind. Right Bup? 

Mwuhahahaha! 

There is a pharmacy in Canada that will fill this prescription. Granted it is three provinces away in Ontario.

Muwhahaha!

The cost is approximately $900 per month give or take a $100. And is not covered by our insurance. But then I didn't really expect it to be since Bup's Trileptal isn't covered. These crazy elective meds! Trileptal, Rapamycin.........really! Let them eat cake! I liken gov't insurance programs to be akin to Marie Antoinette.

Mwuhahahaha!

I laugh and laugh in the face of all this ridiculousness....as I gather a deep breath and prepare to advocate and obtain this diamond dust.......feels like it!........without bankrupting our family. 

Excuse me......but I cannot write any further as I am laughing too maniacally and the screen is blurring from the tears. {{wink}}

TSC Tuesday ~ Topical Rapamycin Where Art Thou?

Those pesky angiofibromas on Bup's fluffy cheeks are getting more pronounced all the time.
If he's hot, or sad or had a seizure they are really obvious. Right now they just look like little dots and no one realizes they are tumors.

Ignore the ketchup...but you can really see the angiofibromas in this pic.

Although one day....when he's a teen, they will look horrible. Angry red like deep cystic acne. As if life doesn't have enough challenges! And yes...I'm vain that way!

An example of angifibromas in a young teen.

There have been days when R has scratched them until they bleed. Scar tissue? No thank you, we're not interested in fostering that either.

In the very recent past, the only option for the angiofibromas has been laser surgery. Ever tried to get a 4yr old to sit still so someone can laser his face........which may feel like being snapped in the face with a rubber band?  Ever tried to sit through laser hair removal of ...well, any area? Super fun.

I. Want. Rapamycin!

We learned of Rapamycin through a TSC Teleconference last year.  Wuhoo! A topical ointment compound which eliminates the facial skin tumors while being used. They return after discontinued use.

You know what else I determined today? It's easier to secure brain surgery than a topical ointment to diminish angiofibromas. How's that for a kick in the tucas?!

TSC Tuesday - Planning for Kindergarten

Kindergarten registration already!  What to do, what to do?

I am not ready for Kinder in a big school. I am not ready for R to be 5yrs. It's all about me....right???

Considering that we just secured PUF for Bup and where he's at emotionally in regards to school, let alone the need for assistance and therapies.....well, I'm just not convinced a regular kindergarten in the public system is the place to go. Plus the public school system would use his funding as they see fit, not necessarily as it's intended.

Thank goodness I had a brain wave!  And no it didn't hurt!

What about another year in pre-school, 4 1/2 days a week, able to utilize the therapists, SNA and home visits?
That's the ticket!
Even better was that I didn't have to plead my case with I'm 4 Kids and the pre-school. They were in complete agreement!

Does this mean that Bup will be enrolled in kindergarten when he's 6yrs? Nope. It means we bypass it all together as it's not mandatory here. Another year of close one-one instruction and therapies should do the trick and prepare R for a "big school" environment.

TSC Tuesday - Program Unit Funding

A New Year and a New Beginning in many ways!
This week R starts pre-school with Program Unit Funding, PUF, which is granted through Alberta Education. It took a few months, many hoops, and a tear or two on my part to get this in place.

Thank heavens for PUF Coordinators, the Director of I'm For Kids Team and the Preschool Director believing in Bup and our family!  The Director Ms.J literally spent all day on the phone, the week before Christmas, presenting Bup's case to the AB ED. Now, this is a Christmas present!

One would think that a Moderate Speech Delay, Moderate Fine Motor Delay and Severe Gross Motor Delay, a little brain surgery, the unknown future of TSC's effects, would be enough to grant PUF. Nope.....all this and it still took additional letters from the behavioral Pediatrician and an all day phone call.

What is PUF you ask? For those of you who are not familiar. This funding is granted until the age of 6yrs and is all about early intervention for children with delays and disabilities.  For R, it means he will have a Special Needs Assistant in the classroom with him and the SNA will also be in our home on the days Bup does not have scheduled class, for the same amount of hours as his class time. He also receives Occupational Therapy, Speech Therapy, and Physio Therapy. His parents...c'est moi!... receive Family Oriented Programming. FOPS. Topics range from here to there....anything that is education or behavioral related to assist us with caring for R and helping him to excel in the classroom.

As I explain this there is a slight anxiety in my heart.....about introducing yet another team of people to R. Change is hard for anyone, especially Bup.  Plus, there's the scheduled life we will now lead. HAVING to be home on non-school days for therapy time with the SNA.  Invaluable time...but now, not "my time".  {{sheepish smile}}

So, there ya have it. More than just 2012 for us. It's a PUF New Year!

To Tell or Not to Tell....That Is Thy Question.

Opinions please....

Those who are close to us know all about R's Tuberous Sclerosis diagnosis and struggles. The seizures, the surgery, the meds, the speech, fine motor and gross motor delays and all that comes with TSC.

Most are understanding, sympathetic and encouraging.

The question is do I explain and tell others? IE: gymnastics coaches.

 I don't know why I'm hesitating to do so.

But I feel I need to...yet don't want to. I want the coaches and others to see how great he is doing....to realize he has anxiety and needs extra encouragement...that when he hangs back and doesn't join in, he's scared and needs help....that the fact that he can do a somersault  and balance on a low beam is amazing.

That his funny baby calf let loose jumps on the trampoline is a big deal!

 That he just learned to stand on one foot and cross his fingers on one hand over the Christmas break and is SO PROUD! 

That he needs smaller, shorter, simpler directions.

B would tell. B the D...the awesome dad. HE keeps a pic of R from ICU, post surgery, and has been known to show it to people....like the PUF Intake Coordinator and R's coach last session. I don't have said pic on my phone. I keep it in.

Yet, part of me doesn't want to keep it in. I feel like I'm making a big deal of something....attention grabbing or something....I just don't know....

What do you think you would do if you were me?

Emotional Overreaction Sans Professionalism

Ohhhh, it was just one of those days. Two days really.

It all started with Wednesday which was Bup's Neuro appt with Dr. B....just our regular Neurologist. Whom I adore. He's heartsy and kind and gets R and is open and smart and all those great doc characteristics that we pray for.

Buuuut why did the bells in my head ring when Nurse Neuro almost apologetically advised that Dr.B has a Resident with him.

Ding! Ding! Ding! Ding!

For whom the bell tolls.

Our appointment started at 130 and it was 345 when it finished. Both Bup and I were so tired. Thank goodness I had a squishy ball with "worms" inside for us to play catch with.

And Mr. Resident's assessment skills were ridiculous. Really. Asking R if he knew where he was. What building are you in? Give me a break! This is a child who only shrugs his shoulders at people he knows if they get too close and ask too much.....let alone a fuzzy faced, hootspa pronouncing pretend Dr.

Finally sweet Dr. B was beckoned and we could get down to business.

No seizure was captured during the EEG.

He is spiking on the borders of removal areas.

Meds were upped as much as they could be which is only a ml of Trileptal. The meds are BARELY holding the seizures at bay. If I am 30 min late with his morning meds....and it happens sometimes.....he has a seizure by 10am. Clock work.

Dr. B doesn't want to bring him in for a VEEG yet because he has been through so much lately soooooooo.....we wait until June for a MRI and VEEG with no meds.

That was Wednesday.

Lurking in my email was a glimpse of the PT assessment results. Scored in the 1st percentile. Severe Gross Motor delay.

Ugh.

So, that was just ONE-MORE-THING.

Then Thursday arrived & for some reason, I lost it when talking to the director of his preschool about the PT assessment. Just started blubbering and it totally took me off guard. Poor lady. I scared the pants off her because I have never shown that kind of emotion in front of the school team. I ended that phone call in a hurry...but not before politely refusing to come see her that morning.

Well, wouldn't you know that Ms. Director (whom I adore) set up a meeting for me with the PT, Speech Path, President of IFK, and a Psychologist. Now what does that tell you?

They were alarmed! Me...blubbering on the phone....look what kind of action/fall out that brought! Lord...(my eyes are rolling into my head as I write this!)

The psychologist? She's for me. Not Bup. Every Friday morning we are now meeting.

If I wasn't so embarrassed I would laugh hysterically.

My interblogging, seizure sharing friend recently wrote a post in regards to "a good cry". Well, Happy's Mommy, apparently I needed one, didn't recognize that and it snuck up on me. Cause when I met with the team Fri morning....I bawled through that too.

At least they laughed when I declined the offer of coffee and requested vodka instead. Ahhhh....they already think I'm nuts hence the Psychologist so I might as well bring booze and humor into the picture.

If my next post is from the Mental Health Unit at PLC, then please note that the booze injection was not seen as funny! ;)

EEG Day

It does not get any easier....these "EGs" as R calls them.

Holding him down...me on his body and a staff holding his head while the tech hooks up the electrodes....it's brutal...always.

This time Bup screamed, cried and yelled, "I don't like these stupid doctors!" and I don't blaim him one bit, but the clincher for my heart was when he sobbed, "No knives. No knives on my head."

The poor little critter thought the Tech was going to cut his head open (surgery).

Kids shouldn't have these anxieties or memories. What happened to lollypops and racecars and snails and puppy dog tails? Well, that's all a fairy tale and here we are all about reality.

Reality is....we have no results from the EEG yet and I am so looking forward to our Neuro appt on the 23 to view the results and I can present my list of questions to Doc Neuro.

Until then, I'm grateful we were able to wash that glue out of Bup's hair and that the crazy "EG" hair has been tamed!

Bup-Up

A little update on our Bup.

He's still doing so well. Enjoying pre-school although he always says before leaving the house "I don't like school. I don't like the sign that says school. It's a girl sign!"

What?! ~ can you see my eyes rolling and head shaking and the we'll just let that slide body language?~

Bup has recovered well from surgery, for all intents and purposes. Of course, the "other" seizures are still lurking. The current Topamax and Trileptal regime barely keep the Seizure Monsters at bay. If I am an hour late giving Bup his morning meds, he will seize at least once throughout the day.

And yes, I am THAT irresponsible mom that sometimes gets caught up in running late and getting the older boy off to school which means Bup may or may not receive his meds late. It has happened. Not often, but it has.

Next month it's EEG time. Wuhoo! Actually, as much as I hate putting R through them, I really want one done and want to hear about the results. I'm "looking forward" to this appt as I there are some questions lurking....about a couple of new drugs. One to shrink tumors and the other to shrink the skin tumors, facial angiofibromas.

Then there is the sleep concerns to address...which I will be firing off an email to Nurse Neuro and Dr. ENT tonight. A year ago Bup had an adenoidectomy.

Recently I had the sleepless pleasure of resting beside R while he slept. That child snores louder than his dad! (Sorry Honey!)

I always found it interesting that he sits up to "turn over" in his sleep, when really he sits upright...then flops down. Now, I'm pretty sure I know why. Be Cause he is waking himself up from not breathing. It was quite alarming to lay there and listen to his breath stop....even if just for a few seconds....over and over again throughout the night. I had no idea. I was sure there was no apnea.

Yeah, well, until this past March, I did not know he seizes at night either.

The Mother of the Year Award is quickly slipping away. See it go?

What will the Docs do for a little one with Apnea? Can you imagine Bup with a CPAP machine?! This is the child who shakes and fusses when I wipe his nose and who has NEVER picked his nose. Nasal prongs or a mask for a CPAP???? Now there's a torturous idea!

So....although R is doing phenomenally well, there are still issues, big and small, some mentioned here some not at all....yet.

Wed is an Opthamology appt to check on the tumor in his right eye. We are expecting that to be an uneventful appt....no new information....other than the crying, and struggling and yelling that will take place.

Say a Little Prayer

Photo source: Lanier Landing

This dimpled cutie has just come through one of the most strenuous weeks of his precious life. Our interblogging friend, Miss Southern Steph, has the cutest son who happens to be a TSC Champion too. Little Oliver just came through grids and neuro surgery to eliminate the seizure monsters.

Photo source: Lanier Landing

Now the healing begins. Pain control, snuggles, neuro pysch testing, incisions, iv's, meds, CT scans, keeping an active toddler preoccupied and safely busy, and hopefully no seizures!

Say a little prayer won't you? Keep them in your thoughts? It's a difficult time and every kind thought however fleeting is heard and affects the heart.

Post Neuro Surge Appt

One week ago today....okay, okay, I am a super-slow poster these days for two main reasons namely tech troubles and motivation....ANYWAY....

Bup had his post surge follow up with Dr.H and it was super! He's really happy with R's progression and healing. Wuhoo!

The two marked changes in Bup are activity level (ie: very busy! climbing everything) and he's friendly! Before surgery he would kind of hiss/growl at people if he didn't want to talk (often) or he would just hide in my leg, arms, etc. Now? Now he is super chatty, super friendly and even touchy!

Witnessing him standing with his arm around Dr.H's neck and chatting away was a milestone in itself.

So, now we do not see Dr. H again until the yr anniversary.

However, Sept will bring an EEG and CAT scan with the neurologist and so far October is only Vision Clinic. Wuhoo!

Dissolving Stitches & Fighting Brothers

Tomorrow is Bup's neuro-surge follow up appointment.

Finally!

Today, his stitches started to dissolve.

Finally!!!

I was getting worried about the stitches as it's been a long time already. Visions of forcing them out where about to wreak havoc on my mind.

Plus, yesterday, Bup asked,

"Can we go to the hosdible but no doctor cut open my head?"

Some things a child should never have to request. Poor mite. And isn't he just in luck as we are going tomorrow!

On a sibling note, I am completely at a parental loss. W has decided that he does not like Bup in any way, shape or form. He is so disrespectful and impatient towards R. Bup can do nothing right....like even breathe. Today it came to fisticuffs over rice pudding. Of course, R does not defend himself and just cries.

To give you an idea of the extent of W's feelings, on more than one occasion in the past 10 days, he has begged me...BEGGED...to have R given away, to go live somewhere else...."you shouldn't have asked for two boys because I never wanted a brother." Crying as he tells me how much he wants Bup to leave forever.

Any ideas? I'm feeling completely inept here.

To give W time with me, I let him stay up 30min later than R, W is enrolled in lego camp to give him time away and he LOVES lego, R is now not allowed in W's room unless invited and vice versa, I offer privledges if he is able to be kind for 1 hr (he's not made it yet) and I take privledges away when he is especially rude or uses force instead of words.

I am stumped.

The Hidden Trauma of Surgery

It's been 3 weeks since Bup's brain surgery.

Three weeks!!!

Those stressful days seem like a lifetime ago...already. I am so glad they are behind us...behind R...becoming a memory. However, that is the problem. The memories.

Bup has rarely slept through the night since coming home from the hospital and often ends up in our bed as a very sad, very loud, very scared little heartbroken mess. We have tried asking what's wrong....did you have a bad dream....what was it about and in the middle of the from-his-toes-sobbing he cannot tell us the root....other than "I'm sad!"

These episodes started upon our return home. Is this hospital related? How much does one hear and remember when they are under anesthetic?

I don't know.

How much does a child of 4yrs absorb, in their own little way, when doctors, nurses and parents are talking over him, around him and about him?

More than I know.

It became crystal clear this afternoon while my cuddly little fellow and I were napping together. I woke up to hear Bup saying in a frightened but firm voice, " Tell the doctors please don't touch me. Tell them. Please don't touch me." Then he snuggled a bit closer and remained asleep.

Hospital "sleep overs", surgery, examinations, MRIs, CT scans, Cardiology appts, lab visits....it all adds up, doesn't it? How do we minimize the emotional impact this Temporal Lobe Resection has had on R? He appears to be doing so well! Happy go lucky, ready to roll 4yr old. Until sleep sets in and then it's terrifying for him. Heartbreaking for us. We have been so focused on the recovery and rejoicing in having our regular Bup about, that it is easy to stash the trauma away. It keeps rearing it's ugly head though.

May tonight bring a sleep of sweet dreams, dreams that every little one should have, dreams of sunshine and playgrounds and parents and playing light sabers with "my boy W"....not fear of Doctors.

Temporal Lobe Resection

It's day 2.

The last few days have been so emotional. We have cried so many tears.

I have never been so happy to hear a little boy say my name.

On Tuesday morning Bup went into surgery to have his right temporal lobe and hypocampus removed due to TSC tubers/tumors and their affect of seizures....that were not responding to meds. (Trileptal and Topomax)

5 hrs later, our little guy, was in recovery and we were still waiting to see him. Meeting him in PICU was the epitome of bittersweet. I cried and cried and could not talk to the doctors. I just wanted to crawl under all those wires and lines and hold him. Thank goodness my sweet husband was there as he had all the wits that escaped me!

We seem to tag team on that. When one of us is super emotional the other is calm and has it all together. Then later for whatever reason, the roles reverse. Thank heavens!

Bup is a star! Within hours of surgery, with eyes still closed, one swollen shut, he is eating popsicles, drinking apple juice and quietly telling his auntie that she cannot eat his popsicle!

His first night in PICU, he woke up and requested to watch Dora!

This kid is amazing!!!

Today the pain meds have been decreased dramatically and tomorrow we are hoping to take the bandages off....scary! Move his lines so that he can have a bath and get out of bed a little bit.

It's been a crazy two days. I cannot believe we are here. In some ways it is so surreal. In other ways it feels like it's been forever, not 2 days. In fact Rhett asked if this is our home. Poor buddy.

Right now....at this very moment....we are all calm and okay. But that is subject to change....like the weather here in Calgary....every 5 minutes!

Pre-Surgery Steps

The days until R's surgery are becoming fewer and fewer. 15 days left.

15 days to accomplish a growing list. Personal and medical. On the medical side there is....

• Directed Donation - I am a blood donor match! Yay! So...I will be donating blood for R's use in case he is in need of a transfusion. Which means, for me, that I must really take care of myself between now and then. Take Vitamin C, drink copious amounts of water, ELIMINATE CAFFEINE as caffeine robs your blood of hemoglobin and if my hemoglobin is low (125 minimum) donation wouldn't be an option. My BP must also be in the normal range: note to self....lots of yoga, sleep, water, vitamin C, & laughter! Book donation appointment. Childcare for boys on this day. Do not faint Mrs. M! ~ In the past, I have been such a fainter when it comes to drawing blood as I'm wimpy and it comes out of my hand as my veins are so deep and little. Oh well! I'll warn the staff and take my time standing up.
  
  

(Source: Canadian Blood Services)

• Cardiology - R is having a Cardi work up on the 21st. Echocardiogram and ultrasound. He comments that he is out of breath when playing hard...running around...etc and he does have those pesky tiny rhabdomyomas between the chambers in his heart soooooo....it's time to check them out again.

• MRI & Interictal Spect - on the 22nd R will be anesthetized to undergo a MRI of the brain and Interictal Spect. These are needed to determine further information about the tubers which are bilaterally located throughout R's brain. This will give the Docs much needed information about placement and size of tubers as well as the pathways between the brain. How is the Spect different from the MRI? Well, I'm no neurologist, but from what little I have learned, the Interictal SPECT is conducted when R is NOT seizing & is used to pinpoint or localize the area of seizures for pre-surgery planning. A radioactive agent is injected into R and then a scan is completed. This shows cerebral blood flow which is affected by seizures; decreases when not seizing.

(Source: UofCMedical)

And that's all the medical appointments...I think...until the 28th, Surgery Date. Of course, we have a personal list to accomplish as well for getting organized, finishing pre-school, kindergarten, etc, etc, and that's a whole other post.

Keep our little family in your prayers and thoughts, okay?

We are really wanting positive thoughts. This surgery is something we have to do for R. For his future. I want with all my heart for R to get through this as seamlessly as possible. Peacefully with minimal fear. In a healthy manner with a WOW recovery. Shocking us as to how resilient and strong he is. Blowing our minds as to what a difference we see in R developmentally post surgery. B & I must stay strong, positive, and loving in all aspects. It's a scary road. We have shed our share of tears over this and will shed more. We know that. However, we are trying to see the light and let the fear go. We need your help please. Send those positive vibes, thoughts, and prayers our way!

"That's whats shakin at the Dairy Queen, Honey!"

This afternoon found the three of us at ACH for R's follow up appt with Dr.Neuro.

W CHOSE to come to the hospital over school...which is amazing...and just fine by me. He hadn't been to the hospital "for fun" in a while. So, while he spent time in Emily's Backyard, R and I were in the Neuro Clinic. Thank heavens for EB. It's a fabulous, supervised play room for patients and/or their siblings. It's been a godsend for our family. Plus, I think it's good for W to come sometimes and feel included in all the hustle and bustle of hospital appointments.

What did we learn today?

Topamax is now a part of R's med regime to try and stop the seizures from rearing their frightening heads. Especially after Monday's episode.

Surgery is still on the radar and we meet with the Neuro surgeon in 10 days-ish.

MRI still end of June and now has the interictal spect added to it. Wuhoo! Thank goodness...because an ictal spect would just be ug-e-ly!

Today....I just felt sorry for us. Sad and sorry. Not wanting to go this route but knowing we really have no choice without robbing R of his development. But I was still sad. Came home and buried myself in the covers for 30 min for a tiny tear or two and a good old ostrich approach. I even set the alarm. 30 min was all I allowed since there are two little boys who need me to be present.....even when I don't feel like it. It's part of the parenting contract. Be present no matter what.

Who needs the paddles to get your heart going when you hear that "you are lucky he is doing so well cognitively. The amount of tubers he has in his brain....he shouldn't be doing this well."

There was an inner gasp at that.

Yes, I know we are lucky. I know that in all my heart but hearing that did not make me feel lucky. I'll get over it and feel lucky later....right now, I'm doing a little wallowing.

"Everyone" always asks if Bup seizes in his sleep. Which gets on my nerves. I do not sit up and watch him at night PLUS with his type of partial complex seizures the naked eye would never tell. Today it was confirmed.

The VEEG showed lots of activity during sleep.

Which explains part of Monday's events. First, R slept until 1030am!!! I LITERALLY checked to see if he was still breathing.

Upon waking up, R had a nose bleed that lasted for the most part of an hour. It was not a happy day. Just clingy and whiny and teary and wanting to be carried. Carried! Uh...Mr. 24.5 kilos...my aching everything!:)

Added to the sadness, is that R was holding his right arm stiff with a clenched fist or he would fold it against his chest. This lasted until about 13opm and then it was like a light switch flipped. R became the happiest, friendly, regular little self. Weird. Disconcerting.

Definately seizure activity.

Which explains the long sleep. Post ictal.

And so the light bulb turns on and the reality that things just may be progressing in a manner that we do not want for R therefore the need for an additional med.....and (gulp) surgery.

That's what's shakin' here.

VEEG Superstar

This little cotton top deserved his contraband yogurt snack more than words can say! Here R is freshly hooked up to the EEG electrodes. You can tell by his rosey cheeks that he had been crying and struggling for the previous hour. Goodness he was happy when we strolled down to the cafeteria to play and enjoy a treat!

Music Therapy. So fun! Bup said "No. I don't like instruments!" when the therapist first arrived, but as soon as she pulled out her guitar there was no stopping him. He loved it! And so did I! It was amazing to watch him shine.

Can you feel the love? Check out the look on his face! This was her last song and she made it up as he asked for a monster song...one that says Boo!