On the road again. Summer-time!

It's been quite a while since I wrote here!

Been busy, been depressed, been accumulating assessment results and focusing on therapies, and mostly just been surviving the multiple directions of need that I try to coordinate for our family. Medical, Therapeutic, Funding, Household, Living in General, and the biggest need - FUN. Gotta maintain that quality of life factor or the kids and I can't get through the day. FUN. It's the biggest ingredient to success I've yet discovered. Make the kids laugh, make a stupid face, silly sounds, pretend to be an animal - gets us more than halfway to whatever goal I had in mind.

Sometimes works with the medical providers also. :-)

So let's see here - the Update.

1. Sasha is done her first year of Grade School - she's almost a Grade 1 graduate! She will be staying at her current school, even though our area is designated to move to the new school (farther away I might add), becuase she is connected to the Child Youth Counsellor, is familiar with the school, the Principal and all office staff, EA's and most teachers know her. Sasha is so well supported at this school, she decided voluntarily to do her last two class presentations in front of the Whole Class.

It's true. Support makes a difference.

We just received a copy of this year's yearbook. Sasha's photo is in the centre of a collage of faces near the front of the book. Last night when I saw that I took that page up to her, woke her up as she was falling to sleep and showed her - I told her she was an important part of that school and they care about her - her response "really Mommy? am I really?". I think that photo and talking about it will add another stone to her foundation of belief in her own value to her community of supports. I LOVE THAT SCHOOL.

2. Sasha is almost done her therapeutic work with our local Blue Balloon agency - funded by our PC Children's Charity donation. We also have received a number of pieces of equipment through said funding. It turns out that it really does help Sasha (and the rest of us) with our emotional regulation. I am so so grateful to the folks at PCCC, we are very lucky to be one of their recipients - I don't think there are more than 50 or so in our area to have been granted funds.

3. I was able to get a referral for hubby and Maxwell into the Hospital for Sick Kids 22q clinic - so we will be starting with them in July. My big hope for that is finally to have some official coordination, ensure all appropriate assessments have been done, and have ongoing follow up - as we've seen with many of these kids - their condition fluctuates and is not always predictable - and having follow up that is aware of his condition would truly be so much easier on our family!

4. Tobias and Maxwell were both ruled out for any metabolic disorders, such a relief! The 22q clinic will refer Tobias for assessments - I expect he will have a cardiac evaluation, GI assessment, and a few other systemic evaluations. It will be a relief - heart conditions are a running theme in his family.

5. Maxwell was diagnosed with mild Cerebral Palsy as an explanation for the gait abnormality, drop falls, stumbling and dragging his foot, and odd positioning when crawling/sitting. By one specialist. A world renowned neuromuscular pediatric specialist.

The Developmental Pediatrician, and the Physiotherapist who recently assessed Maxwell did not agree.

I officially Don't Care. The diagnosis means we have an understanding for what we as parents observe (that said practitioners don't see becuase they don't know him and they don't observe him all the time including when he's tired or having off days). More importantly - the diagnosis means we can access funding for therapy and equipment that will optimize his chances for outcome.

I can hear things flying to the floor from the crib - the little guy is waiting to be released for the morning - better wrap up here!

It's summer time. We have a little pool set up out back. The kids are running around in sandals or barefoot, the windows are open. Maxwell has some skin problems and continues to have frequent colds - but he's doing really well this year. No severe eczema, no wheezing. Sasha is in her outdoor element. I've gained about 15 pounds with the dairy/wheat/any-junk-food-I-want dietary changes - but managed to buy some bigger comfy shorts so I don't care about that either at the moment.

Life Is Good. I have my complaints obviously. Income would be helpful. But we're doing okay. My newest obsession? Couponing and price matching. Watch for the link I'll try to get up -  mrsjanuary.com. The greatest guide to lowering the cost of shopping EVER.

Will sign out with a photo from the session we recently were gifted by Meghan Liddle Photography - she participates in the Littlest Heroes Project (Inspiration by Art I think it's now called) - and she did a fantastic amazing job. Love Her.

Visiting with the pups in training - Autism Dog Services in action.

Making the most of our family time - even in Emerg!

Mommy's worried but I'm not... another stupid doctor statement

It's been about a month since my last update.  I guess things happen on a cycle?


Here's the latest!  I noticed sores in M's mouth last week.  Didn't do anything with it as he's had them before. He also had gunky eyes, but he's had that for quite a while and doctors keep saying it's nothing - not a concern. 

Saw the Developmental Ped on Thursday who said to Maxwell:
"Your mommy's worried about you but I'm not!" 

Dumbass woman didn't look in his mouth.  Famous Last Words.

The next day the daycare noted that Maxwell was not behaving well as he normally does - he was NOT listening well.  Not Like Maxwell.

 

By Saturday he was completely off.  I looked in his mouth again - he had thrush all over inside of cheeks and back of throat.  OUCH.  No wonder he wasn't drinking much, eating solids, or listening well.

I called the GP's after hours service on Saturday, their on-call doctor suggested going to a local walk in.  I don't do that anymore with his conditions.  That's my new rule.  They aren't equipped for him.  Plus, I wanted to be sure the yeast wasn't going systemic.  With his eyes being gunky, his cough being strange the last two days (as if it chokes him), and his bum having a strange inflammation, I wanted to double check the kid properly.

So on Sunday we went to Sick Kids and spent 7 hours there.  Lots of fun.  They did basic blood work, he's normal - no concerns about it being systemic.  Got the expected prescription - Nystatin.  Thrush isn't normal for a kid his age, but he has steroid puffers so that increases the risk, and he recently had antibiotics which also increases the risk.  They told us to call the immunology clinic and see if more testing should be done.  So we're now waiting to hear back from them.

AND, while at Emerg I noticed the diaper area around his anus which has been inflamed and ulcerated over the last month (raising my concerns about inflammatory bowel disease as he also has an anal skin tag) was bleeding in several areas - little pin prick seeping bleeds. Doctor said it wasn't yeast and it didn't look typical to her.  She suggested a GI referral was in order.

Sasha is already booked to see the Chief of GI at sick kids in the spring because that doc's research showed that the 19p12 dup can be associated with inflammatory bowel disease - so i emailed that doc last night and she said if our ped thinks it appropriate to send a referral, maxwell can also be seen when she sees sasha.

kids.  who knew there'd be so much medical.  phew.

gotta try to get caught up on the weekend chores now.

Let's CELEBRATE.  Got the results back on the 2nd neurodegenerative condition we were a bit worried Maxwell might have.  His results are NORMAL.  So the Big Scary conditions with future expectations of wheelchairs and shorter life time are IN THE PAST.  Stop crying everyone.  It's good.  It's good.  It IS going to be okay!
Doesn't mean there aren't other worries - kids come with worries built in - never mind kids with genetic disorders and all that jazz.  But the Big Scary Worries are now In the Official Ditch.
How nice it is to be able to cry finally - if there was confirmation of the Big Scary ahead I probably wouldn't - but now I can finally luxuriate in feeling it - that boy is going to be OKAY!

Mommy's going to take a moment to crack up.  Then off to the daycare to watch the Toddler Snack Routine - once we're confident in the safety of that routine he'll finally be able to join his toddler friends in the actual Toddler room - to actually EAT with his big kid friends!  My baby Maxwell is finally going to really start moving into the big kid room - and by mid-summer we'll be doing the move into Pre-School!

Up and at em Engineer - whoo whoo!

Cheese and Faith

Where to start.  How about an inspirational reading.

"Never doubt that a small group of thoughtful, committed citizens can change the world; 

indeed, 

it's the only thing that ever has."

Margaret Mead

 Pure Cheese. 

Let's try another one.

"Be faithful in small things because it is in them that your strength lies. "

Mother Teresa

Also - straight out Pure Cheese. 

It's where I'm living these days.  Living in a space of faith and strength. Faith that by gathering around me the few folks who give a damn, together we'll get my family through this challenging time and into a bright sunny new day - and Strength to hold this faith, borrowed from the already sunny small things called My Children. 

Enough gushy cheese.

Speaking of cheese - let's celebrate.  After more than a year of a severely restricted diet supporting my breastfeeding of my son with all his food allergies - I am DONE breastfeeding.  For more than a week now I've been eating dairy and wheat like it is going to run out.  I think my jeans are getting a bit snug.  Turns out these foods are truly far more enjoyable than rice and rice milk.  Coffee with cream is yummy.  But you know what - they aren't as great as I remember.  I think it's not going to be so hard to have control over eating this time around.

Will post an update on that one in about 30 lbs or so.

So to update the last few months.  Stuff has happened.  We survived Hannukah, Mikulas, Christmas Eve (angels), Christmas Day (santa), New Year's Day, a visit from the Flu, both kid's birthdays, their Joint Birthday Party, the restaurant's Christmas Party.  And the passage of life in general.

It's been such a blur of various applications, appointments, gift lists, coordination of activities, on and on and on that I am about to start a project management software to help me get some control.

In the meantime however, just wanted to give a quick update on the kid's and their medical status.

Maxwell:

- neuromuscular doctor rules out any worries about Mitochondrial Disease

- same doc said not at all likely to have Ataxia Telengiactasia, however he will blood test to definitively rule out - he suggested that the coordination issues are related to the mildly impaired signals in M's brain MRI

- still awaiting most recent Immunology blood work results - question of the day: is there still low IgG and is the little guy responding to Tetanus vaccinations yet

- saw Neurosurgeon re tethered cord concerns - he says good to go for now, and will FOLLOW UP in 2 years.  that's my favorite medical thing EVER - he will monitor so I don't have to!!!!

Sasha:

- Neurosurgeon wants a spinal MRI - dated for next week (Feb 14th - nothing says Happy Valentines like spine pictures) - and he has already arranged a follow up for us to discuss the results

- Neurosurgeon also referred us to Urology for follow up regarding the ongoing toileting issues

- booked to see the GI specialist to evaluate for Inflammatory Bowel given symptom history, genetic condition (19p12 dup), and positive family history

- have been accepted into an Autism project at Sick Kids who will provide multiple specialist coordination and ongoing follow up for all areas appropriate - just now waiting for first appointment to be set

- hope to have follow up with their Genetics Clinic

- we are presently participants in a Genetics of Autism study through Dr. Szatmari at McMaster so will be getting very detailed genetics info on the whole family

- were approved for funding to go ahead with therapy through local agency to support OT, speech, behavioural - and am still waiting to hear if we will also be covered for psychology 

Hubby:

- saw neuromuscular doctor also - we are waiting for blood work results - he indicated very unlikely that there are mitochondrial disease concerns, but there could be other issues so we wait.

i think that's the update.  there's a million other things ongoing, but must move on for the day.

just called sick kids re immune results and they are now having a fellow return my call.  please god don't let it be to inform me that the Ataxia Telangectasia results were positive.