More donations!

My family just wanted to thank Midnight Runs (MR)for another awesome donation of $340, which brings their total donation to $2740!! That is amazing on it's own. A feat unto itself. BUT, consider this.

It's more than what youcaring.com has rounded up, and this has been shared across Facebook, and numerous news articles. 

So, again, MR, amazing. Absolutely amazing.

And my brother Nathaniel, I think you missed your calling. You're really good at getting people to give you money. Pretty sure all of that mobster work you did in your past probably helped you. Wink Wink.

And Nathaniel's work also donated $100 to Wyatt's fund. It's unreal how much help we're getting, even though, NONE of these people KNOW US.

Don't get me wrong, the donations at youcaring.com are great. They're fantastic. They make me worry that much less by the end of the day. I feel like a burden is slowly being taken off of me. And there are tons of people who don't know me, or maybe know of me, or thinks Wyatt is the cutest baby, and they want to give us a chance to give him a better life. Whatever your reasoning is for donating to Wyatt's fund, I thank you from the bottom of my heart. It's truly appreciated.

Just some quick thank yous:
Judann Cdebaca, Ashleigh Lepkey & Josh Pillar, Robin Bolhuis, Natalia Maria Pico Pareja, Sophie Lariviere, Kathryn McNeely, Anthony Fossum, Natacha Brun, Julie McNeely, Colin Barrett, Sandra Morgan, Aunt Pat & Uncle Brent, the Lovely Mrs. Wells, Linda Crawford, Melicent Lavers, Brian Reid, Brice Church, Melinda Morgan, and last, but not least, Kathy McMahon.

Personally, I'm hoping we can go down to LA in July, and do our interview with The Doctors in their studio. 

Have a great week, and stay tuned for more updates!

This Week in the Life of Wyatt

It has been a very busy week for our little Wyatt. He has been off and on febrile, so we know he's fighting something off, most likely the cold that has been going around the house for the passed two weeks. If the dried up snots around his nose isn't a sign, then I don't know what is...

We started the week off with the case study , and then we were off to Hazeldean Family Chiropractic for an assessment. In no way did the Chiropractor do any adjustments, just felt behind Wyatt's neck, and did an X-ray on his spine. Poor little guy has had so many X-ray's in his first year of life. *Sigh* 

Right after the Chiropractor, Wyatt went off to see his Osteopath, who did her usual thing with Wyatt, and things went well, not great, but well. Wyatt was fighting off a fever at this point, so he was schmidge cranky.

Two hours later, Wyatt had a great mouth opening! We took some good pictures of him just babbling (his version of babbling, not normal baby-babble), and trying to stick things into his mouth. He's always so happy after the Osteopath, he's always talking and ... just plain happy!

 


The next day, dad had a Mess dinner to go to. Unfortunately, dad had to come home much earlier than he originally expected, because Wyatt developed a fever of 39.4. 

As a mom or dad - do you feel you could handle two toddlers, and a infant with a moderate grade fever? I think I could, if the baby wasn't disabled. I'm going to tell you why.

Wyatt is connected to a Heart Rate/Oxygen monitor. It shows us his saturations, and well, the rate of his heart beat. 

Two things happen to every human being when they get a fever.

Their body temperature goes up.

Their heart rate goes up.

Before I go further on with this story, you as a reader, must know this about me: numbers scare me. I said it in math class 15 years ago, and I'm saying again. Numbers, effing scare me.

Wyatt's heart rate had gone from 135 to 175 in a matter of an hour. Ask a nurse or doctor, and they'd shrug their shoulders to this and pat your shoulder and tell you NOT to worry, but - I'm no doctor or a nurse. These numbers were scaring me! By the time dad had come home, I was a complete, and total wreck. I felt like a complete failure - I thought the probe was on wrong, I thought he was working harder to breath (his O2 sats were at 85-88%), so his heart was beating fast to try and compensate. Oh, and I tried every trick in my book for that damned monitor 'to read correctly'. (It was always reading correctly).

BUT, it never occurred to me to take a temperature, with that thing... you know...every household has one...

Thermometer.

Wyatt was febrile again. Dad had realized it the moment he strode into our room. I had become so FOCUSED on the numbers, that I didn't just look at him, and think to myself, take his temp. I felt his forehead - but little did I know, I myself had a fever, so I couldn't feel his. We were probably around the same temperature in the end.

So, after bawling my eyes on dad's crisp, white dress shirt, and possibly rubbing most of my snot on it in the process, and telling him how I can't take care of Wyatt on my own, he just rubbed my back and said "Amy, Wyatt is a two-person job." 

And that was, that.

I put the toddlers to bed (an hour late!), and dad rubbed Wyatt's back until his heart rate went down to a cool 120, and O2 went up to a lovely 98%.

I might get the toddlers 90% of the time, but Wyatt is more complicated when he's sick. Which, is often. 

To top off the end of the week, Wyatt is lying in bed right now, medicated with Tylenol and Advil. Still febrile, but at least dad is stone's throw away this time.

Wyatt's Case Study

*Insert drum roll sound*

Wyatt's specialists were all finally able to get together today for a Case Study.

3:00 pm - Meeting begins (Staff only)

3:00 to 3:50- Mom and dad wait... mom starts to convince herself they forgot about them waiting in the waiting room.

3:50 - ENT comes walking in wondering where the meeting is...they're in their scrubs. They've come from the Clinic (always busy guys).

4:05 - We're guided into this tiny room, with this TV that buzzes right against our ears to a high-pitch sound. Which everyone listens to for the next 40 minutes.

We were supposed to meet everyone for 15 minutes. That was our window. Everyone stayed. For 40 minutes.

6 Beeper pages later... (ENT mostly...)

Mom and dad leave feeling - wait for it.

Relieved. 

It's rare that I leave CHEO feeling relieved. Usually, I feel defeated, and it's not until I get home that I start to feel like myself again. But this time, it was different.

Andrew and I hold hands on the way home in the van, there is a feeling of satisfaction.

ENT: Decided that Wyatt was to have a disperse of Botox into his masseters, and his salivary glands.

Neuro: Decided that we are to meet in a month's time for a neurological assessment, and he is closely working with Genetics. He is confident that Wyatt has some kind of myopathy of the muscles, but to progress further in his diagnosis, we need a muscle biopsy. Possible local anaesthesia may be visited, to avoid a general anaesthetic.

Geneticist:who is proud of mom and dad as parents for "handling things very well", is going to get the paperwork in order for an exome. We expect an appointment soon.

PED: Dr. Issa will continue to be the hub, and kick butt. (That is a medical term, if you do not hold a medical degree).

Anaesthesia: Will likely not be in direct contact with the parents, but is definitely considering the g-tube procedure. Biggest obstacle: Wyatt needs to be well (not admitted), for at least 6 weeks.

During this time Neurology negated Moebius syndrome, Genetics is awaiting results on Trismus-Pseudocamptodactyly Syndrome, and ENT confirmed that Tongue Tie is in no way a possibility. 

If you read Wyatt's Medical Tests, you will know that TMJ is not an option, as well as, Tetanus, and CP. 

Stay tuned for the next Blog: Pediatric Chiropractor & Acupuncturist!

A big thank you to all of the donations!

On Easter Sunday, we were surprised with a $2400 cheque from my brother's car club, Midnight Runs. It was unreal. I cried. Andrew cried. Nobody else cried though. It was awkward. 

We just want to thank everyone from Midnight Runs for their generous donations. And if you ever need a website made; I'm your girl! I still cannot believe it, and my brother is still rounding up MORE donations from the car club. These guys spend so much money on their cars (because they LOVE their cars), and they somehow found money to give to two people they will likely never meet, it's truly...dumbfounding.

I also want to mention one thing on behalf of my brother. To Midnight Runs : You gave my brother a new lease on life.

From his sister; thank you. (Dude loves to race!)

I've mentioned this before, in my interview, along with anybody who will listen, I get a lot of family support. Most of all, from my mom. Mom's are funny, it doesn't matter how much you change along the way, as their child, they will always dote on you, worry about you, try to make things better for you.

And their hearts are always in the right place.

I love you mom. I'm who I am today, because you made me this way. You are... stoic, brave, unrelenting, loving, smart, beautiful, strong... and a smidge eccentric. And I love you mom.

Because of you, every time I get knocked down, I dust myself off, and get back up again. Knock me down again, and I WILL ALWAYS dust myself off, and get back up again...and maybe throw a punch (thanks dad!).

So, with that said, a big thank you goes to my mom for organizing a charity campaign for Wyatt, at youcaring.com. Wyatt's mom and dad are contemplating going to the US for exome sequencing using the donations. Google exome sequencing. I'm not explaining it.

To Midnight Runs: we'll get Wyatt a dirt bike if there's anything leftover!

BIG THANK YOUS TO:

Paula Moore, Andrea Miville, Emmanuel Bennitez, Michael Miller, Ingo Jobling, James Freeman, Larry Wilcox, Michael Magda, Carmen Brisson, Sonya & Vince Grant, Quang X. Pham, Sarah Simmons & Tom Pelland, Amanda and Pat Beauvais, Julie Mallette, Sean Smyth, Julie Fairweather, Patrick Cusson, Nora McNeely & Mike Brameld, and last but certainly not least, Matt Wilcox. 

And MOM, thank you for cleaning my floors, my bathrooms, putting away Jude and Aila's clothes, even though you don't know where they go, thank you for doing my dishes. Every. Single. Time. You. Come. Over.  Thank you for folding my clothes. Thank for doing loads of laundry. Thank you cleaning the play room. Thank you for putting Zoë out when she needs to. Thank you for trying to give me natural ways to relax. Thank you for sitting with Wyatt while I pump.

Thank you mom, for surviving cancer. Not once. Not twice. But three times.

You need a cape. And possibly a sparkly insignia with M across your chest. 

And x-ray vision.

xox amy

Medical Tests

After reviewing many of the comments, it's become clear, it would be easier for those of you in the medical field if you could SEE Wyatt's MRI, CT and ultrasounds, EEG and EMG.

I will be posting all of this information as subpages to "Medical Tests" for those of you who are interested.

Thank you for your constructive comments, and I hope to have this work completed by the end of Easter weekend.

The Media

It all began with one impromptu interview with CBC News: 

http://www.cbc.ca/player/News/Canada/Ottawa/ID/2449786279/

Then progressed to the Ottawa Citizen:

http://www.ottawacitizen.com/health/What+Wrong+with+Wyatt/9749836/story.html

And then we got a phone call from ABSnews.com (he's on the front page!):

http://abcnews.go.com/Health/baby-open-mouth-medical-mystery/story?id=23380358

A quick check of the website's inbox, NBC news wants to do a piece on him, so dad does a phone call interview with the news reporter.

Wyatt's story has been posted in Norway, and a doctor from Germany has been in contact with Wyatt's mom. In a mere four days, What's Wrong With Wyatt has gone international.

Absolutely amazing.

Thank you to everyone who took the time to thoroughly read through the website and provide though-out diagnoses for our little guy, it's truly amazing how many smart people are out there!

Also, on a side note... there are a lot of not-so-smart people out there - but it's nice to have a good laugh through hard times!! Some advice was just...well, laughable!

The website's inbox has been inundated with emails. Six days ago it had two, one from Omar Dabaghi-Pacheco (CBC news), and a nurse with her diagnosis. 

Again, absolutely amazing. 

There were definitely a couple of really good questions being asked, however, no real diagnosis as of yet. 

There is a NEW section up and running on the site, called MEDICAL TESTS. Please review it before sending in your thoughts. 

Wyatt's Gtube

As many of you know, Wyatt's story began 9.5 months ago, at the Children's Hospital of Eastern Ontario (CHEO). Although, I do not foresee Wyatt's story hitting a climax any time soon, I am happy to say, that I feel like we've finally gotten over a major obstacle in Wyatt's story.

The G tube.

Wyatt has been 100% NG fed since birth. The damn thing gets in the way more and more, and Wyatt is fully aware of how to pull it out of his cute, button nose. And he does it often - 3 to 4 times a day is a norm for him. For many of you, you may wonder, why is this a big deal? Every time Wyatt pulls his NG tube out of his nose, a couple of things may or may not happen:

1. He vomits and chokes;
2. The contents of the NG floods his oesophagus, and he aspirates the contents, which may or may not lead to aspirated pneumonia;
3. He chokes on the actual NG tube;
4. He contaminates the NG with external environmental bacteria, which can infect his oesophagus and stomach if the tube is not properly sterilized.

Not to mention, the NG tube is quite long, and although mom tapes the tube to his back, he has managed to wrap it around his neck several times. 

With that said, it seems like our voices have been heard, finally. Wyatt is to get a Case Study done this coming Tuesday, and for those of you who don't know, a Case Study is when all of the specialists, who follow the patient, come together in a meeting, and develop a plan of care for their patient. It's a way to ensure everyone is on the same page. On that page, for certain is a possible G-tube procedure, and hopefully, a biopsy of his facial muscles. The G-tube will allow Wyatt to be inconspicuously fed, and the biopsy will hopefully, shed some light on the "myopathic-like units" found in Wyatt's EMG from October.

Anaesthesia has been so reluctant to put him under, because he is at a high risk of losing his airway. If he loses his airway, there is a chance he'll need an emergency tracheotomy, which would set us back. And there is no guarantee that if the emergency trach happened, that Wyatt would at least come out of the procedure with a Gtube. Many people have contacted us through Wyatt's site of a fibre optic intubation, however, the anaesthesiologist cannot guarantee a safe airway, as sometimes, the tube causes bleeding down the nasal cavity, and they cannot see clearly where to go and open his airway. 

Here's hoping that come next Tuesday, I'll have some news for everyone! Don't forget to follow him on Twitter (@whatsupwithwyat), as I post updates there too!

Ottawa Children's Treatment Centre and another ambulance ride...

This past Tuesday, mom and dad brought Wyatt to the Ottawa Children's Treatment Center (OCTC) for an intake interview. It went well, and Wyatt will now be seeing a Speech Therapist and Physiotherapist at OCTC. He did well for most of the tests, however the physiotherapist did confirm his Osteopath's belief that he has weak flexor muscles in his neck.

The Speech Therapist was very surprised by the amount of sounds coming from him, and she was quite happy. Wyatt is capable of making 'mama', and 'gaga', and the Speech Therapist confirmed she heard 'da', but we never heard it.

Wyatt will likely have some kind of delay in speech, but mom and dad have been teaching him signs since he was two months old. He has signed "All done" for us, and seems very engaged when teaching him his signing-alphabet. He will be able to form certain words for sure, but other words he may never develop. Only time will tell.

Unfortunately, this evening, Wyatt had his sixth ambulance ride. This time it was with dad, as he was the once packing up to go! Wyatt was vomiting copious amounts of blood - likely from a bloody nose from suctioning from a catheter too large for his nasal cavity. It was very disturbing to see that much brownish-red liquid POUR out of his mouth. After watching that, it was obvious to call 911. The ambulance came in about 10 minutes, and left in less than five. We're really starting to streamline the process. We were waiting at the door with baby (obviously), car seat, over night bag (pre-packed), health card, blankets and toys. And as always, his med-bag, which includes, suction unit, O2 monitor and feeding paraphernalia. 

Wyatt is now at CHEO waiting for chest xray, and blood work results. He will be staying the night, and will likely be admitted.

Wyatt's Osteopath visit

Wyatt saw his Osteopath a couple of days ago, and for those of you who don't know, an Osteopath is a holistic physiotherapist. She manipulates his ligaments, muscles and bones to help the healing process. Osteopaths believe in one's energy can make a difference during the healing process.

Wyatt hadn't seen his Osteopath in well over three weeks, because of a 1.5 week stint at CHEO. Fortunately, after the 30 minute visit, she concluded that Wyatt's opening hadn't stiffened to the point that she had expected, and told us some good news: Wyatt can see her once every two weeks (instead of once a week)!

The Osteopath hopes that Wyatt will be able to eventually fit three fingers into his mouth (this is considered the norm), and to loosen the muscles and tendons. She has massaged the masseter muscles, and felt that they weren't that stiff - Wyatt's issues lie in his joints. She suspects he may be missing some cartilage in the area.

Mom continues to do physiotherapy on Wyatt's jaw, once in the morning and once in the afternoon.  After physio, Wyatt is extremely orally focused (puts fingers and toys in his mouth) and drools a lot. On occasion he will cry during the physio.  We hope that dad will find time once again to do physio on Wyatt, that way Wyatt gets physio three times a day.