The many adventures of Yaya and Joe

Back to earth. For a little while anyways.

noreply@blogger.com (Sharon) — Thu, 03 Nov 2011 20:24:00 +0000

Right! Quick update. After more trial and error, we seem to have Ella back in a good spot. One med added. (Another anti-psychotic) Great success! Massive improvement at home and school. All the ADHD symptoms went. (bloody good riddance too!) Weaned her anti-depressant med to see if it was causing said symptoms. (ie: making her too uninhibited) Nope. While the new med (Risperdone) worked on the ADHD like stuff, she became utterly depressed again. Crying over everything (a new grocery store being built for example) and just inconsolably sad. :- / So back came the anti-depressant and voila. Happy meal once more. Are you following all this? :)

And for even more good news, the new med is an appetite stimulant so guess who has packed on FOUR pounds?? So so proud of Ella. She is feeling sick a lot from eating so much and gets lots of hiccups and burps etc. but that seems like small potatoes now.

Her school is wonderful and so helpful and cooperative. Her new friend has had another play date and sleep over and Ella is excited to have her come to her birthday. She has an invite to another friends birthday soon too and is so thrilled about that. For Ella's birthday we are going to have a movie theatre theme here. Our home theatre room is almost finished and the kids love it. We have a popcorn machine and will do a kind of concession stand and build your own sundae thing. I think it's going to be a great seventh birthday.

Alex is okay too. Hanging in there through the storms. He is showing a bit more anger and I think it has been quite hard on him. Watching his sister go through all this and watching us all struggle... he is still a wonderful charming snuggly young boy though and has a wicked sense of humour. He gained a little bit and still drinks his diet. Oh and did he ever LOVE Halloween this year! Perfect age!

Must get them from school now. Just wanted to let you all know we are back in a good spot and ever so grateful. Ever so grateful for all the continued support too. xxoo

If it walks like a duck, and talks like a duck...

noreply@blogger.com (Sharon) — Tue, 11 Oct 2011 23:59:00 +0000

Doesn't mean it is a duck. Ella scored very high in having ADHD. We tried the medicine this past weekend with the words "you will know within the hour if it works or not" imparted to us. Lets just say we knew. Wow did we know!! Ella went on the crazy train. That poor child was wigged right out. It took all her existing issues and cranked them up to high. She wouldn't get off the roof of the car, she would unbuckle her belt while driving, tried to open the door while driving, grabbed razors, held wasps etc. She could not focus on anything. She couldn't see others really and how they were reacting, she was fighting everything and everyone. Physically and with her words. It. was. awful.

After her physically beating on me and then crawling around of the floor moaning, in between shaking, I called her Doc. Needless to say she said to stop it. After one day off it, Ella slept the best she ever had last night and has been pretty decent today.

One of the bright lights in this weekend is a girl we met who Ella now rides the bus with. She is so so sweet. She has fetal alcohol syndrome and lives with a foster mother. She was so good for all of us... Ella fell in love. She came for a plalydate and then came and spent the night and all the next day. Ella says "X is my best friend because she understands my problems." It was the first time Ella, I think, felt like she could truly be herself. She even held her pullup up and said point blank, "I still have to wear these as I have problems sometimes. The kids at school make fun of me. Are you going to?" We were so very proud of her for just tackling the issue. When she had stomach problems it was X that she wanted. She hugged her and hugged her. We tucked them up in the same bed and they watched Tangled while eating popcorn. I find it interesting she would come into our lives now...

Paed and Psych are supposed to be talking about what to do next with Ella after the adderall disaster. We had talked about doing the formal ADOS autism testing, PDD et al and may do so just to tick off the box. I don't know though... Psych doesn't think Ella fits and Neuro doesn't either... There is also talk of a three week admission to a Paeds Psych ward to do a full once over but now after seeing Neuro today I don't want to do that yet, if ever.

So the whole duck thing? Does she have sensory processing disorder? kind of... does she have ADHD? kind of... does she have an anxiety disorder? kind of... what she has, according to Neuro is behavioural dysregulation. (Psych says regulatory disorder) and Neuro says this is a feature of Dysautonomia. As are all of Ella's other symptoms. He says too she doesn't have ADHD, she is just hypermotoric. She needs to move! :)

He also talked about Neural crest development and a particular gene. PHOX2B. If anyone remembers we had Ella tested for this in regards to Central Congenital Hypoventilation Syndrome. He still thinks (as did her old Biochem doc) that some mutation along that same line is responsible for whatever IT is that Ella has. And any single mutation can have wide ranging manifestations. And manifestations that cover all systems. Not just autonomic. Hence her having bowel trouble when that is part of the enteric system.

So. We are still going to wait about six months and hope Ella grows a bit for the testing! We will do tilt table, sweat test, manoeuvres, sensory testing, a bunch of other stuff involving blood work and spinal fluid. Mito and metabolic stuff comes dancing around the edges at these appointments now but there is absolutely no point in speculating about it. If that is the directions things will go then there ain't no stopping that train.

In a nutshell. He still believes something is responsible for all of Ella's issues. He thinks it is some underlying Neurological disorder/disease. He still calls it Dysautonomia. As it covers it all for now. His next goal is to rule out that she is on a regressive, degenerative path. He doesn't think she is but he is not positive. The fact we are going backwards, albeit slowly, is cause for concern. Unfortunately he said we may just keep going backwards so slowly it may be ten more years before we are in a different place. He says even though there are Psych issues, they are new and not how Ella initially presented so they are not unto themselves, if that makes sense.

Breathing a bit deeper today... just holding on. Took the kids to buy some pumpkins before we went to the Doctors. That is always fun. Simple pleasures mean so much more these days...

School. The good the bad and the ugly.

noreply@blogger.com (Sharon) — Tue, 27 Sep 2011 20:10:00 +0000

Alex has officially begun his school life. He is going two afternoons a week and absolutely loves it! It is so sweet. He has a few friends in class who he has taken library classes with and is fast making new friends.

Ella is having a very bumpy start to Grade Two. We are not sure what is going on but whatever it is, it isn't good. She is struggling so hard to pay attention but she just can't seem to focus. It is as if she can't hear what is going on. Words that are being used to describe it are all sounding the same. The most common being, untethered, no anchor, lost in space, is she seizing? etc etc. Her teachers think she has ADHD. Her principal is scrambling to get an aide back and she has now been put on the special needs bus. The latter decision was made for a few reasons. She is entitled to it as she is still coded at school. (that means she is acknowledged as having one or more disabilities by the government) It comes right to the front door and the trip takes less than ten minutes there and back as opposed to 45 minutes. Also the sn kids get out almost half an hour early at school. Hopefully this will help in keeping her from getting too stressed. When she is overwhelmed all of her quirks and issues get worse. (Today for instance at school she chewed through two sets of computer headphones and coloured her face with pastel.)

Still. It is so hard. We have no idea what is happening. We had such a great Summer this just blindsided everyone. We willingly gave up her aide. We were feeling so positive... It is small still in the scheme of things but once again we are moving backwards instead of forwards. And let's just say no matter how you slice it regressions plain suck. For everyone.

This is when we wish for a diagnosis. Some glimpse of the future so we can either be reassured or prepare...

We see Psych next week and Neuro the week after so it will be good to get their thoughts on things once more.

Either way a new journey has begun.

I was lucky enough to go to the Women's Retreat this weekend for Mom's of special kids. I felt at home. And they help me remember it's okay to be different. Really we all are. Some of us just need our hands held a little tighter.

(or our toes painted a bit brighter :))

Back to school

noreply@blogger.com (Sharon) — Thu, 01 Sep 2011 23:33:00 +0000

Off and running once more. Ella started Grade Two today and there were some good moments and some maybe not so good. On the good side? A few friends she really likes and are great kids are in her class. Not so good? A boy from grade one that she doesn't get along with is seated right beside her. (Combining the two kids with emotional issues that manifest on opposite ends of the spectrum? hmmmm... maybe they know something I don't.) Good? Her grade one boyfriend is in her class. (ha!) Not good? Hugging the wrong Mum and bursting into tears realizing it wasn't me. Not good. Throwing up on the bus. Good? She kept it in. :) Not good? Starting the day at 3 a.m. The good... early bedtime! It is done. That anxious first day. It was crazy busy, the principal was acting as the crossing guard, everyone was frantically searching old friends, scanning class lists, kids running about, new clothes, fresh books... the sky was blue and the air was cold... it was just really nice and nice to be done at the same time. We are welcoming some routine back around here. Still not sure what school Alex is going to. heh. But he is excited and open to anything so we aren't worried. He too has a new backpack and lunch kit hanging on his coat hook just waiting for him. Good news for Alex health wise... we are giving up trying to get him to stop pediasures. He is back up to about six a day but he is eating too and he really is trying. Even if he doesn't always keep it in or eat much, he tries and he makes very healthy choices. With this, he has gained two pounds!! Enough to kick his weight up to the 75th % matching his height. Really great and he is so proud. Ella unfortunately still hasn't budged. Now the concern is malabsorbtion. So in conjunction with the GI dietician we are doing a three day food log to make doubly sure she is in fact getting enough calories before we start poking her and checking stool, etc. She seems to us to be eating like a wee truck driver but it is very possible our perspective is skewed after all these years of liquid diets! Crazy new exciting things happening all around in our lives. Not much I can speak of at the moment but suffice it to say I should have known better. I was lulled into a false sense of stability! ;) Everything is good and we are enjoying lots of grandparent visits before the snow flies. Honestly? I think our family has never been stronger.

Summer wind down

noreply@blogger.com (Sharon) — Tue, 16 Aug 2011 22:42:00 +0000

And what a wonderful Summer it has been! Ella and Alex have played together more often than I could have hoped. Without pounding on one another! Ah it's the small things in life that bring you joy, eh? heh.

We have stayed close to home but have been relatively sick/stress free with the cooler temps over the Summer. Lot's of backyard play, splash pools, play dates and bike rides. Not too many appointments and just a general overall happiness.

Ella's weight is still the same. (Not gaining but eating like crazy) And it is still the subject of much talk amongst her Doctors. Yes we should do something, no we shouldn't, let's wait a few more weeks, months, x amount of time, Oh my goodness she is way too skinny! No we don't need to worry yet, etc etc etc. I am finally going to let it go myself. She is doing really well. She is excited about school, happy, sleeping most nights and yes... eating. She is still experiencing anxiety but it is not to the same degree. She ticks quite often now... hand fluttering and an air gulping/smacking kind of thing, our wee guppy... but that is really the only way it manifests at the moment. And it doesn't bother her. We are going to see GI again to clarify some things and we might even ask about trialling a reflux med wean. Also we see the Ped again at the end of August.

Alex is the same too. Down a bit in weight but not dropping centiles like his sister. He throws up a bit and is still mainly drinking his nutrition. Still complaining of his "tummy ache wrapping up with my belly ache and being tangled with my hiccups." But again over all? Fine. Growing, healthy, happy, funny boy. He too will be going to school this autumn! Eeeek! He is registered for two days a week in preschool, but he might actually attend Early Entry Kindergarten at Ella's school. Trying to figure out what the best fit is.

Speaking of... I have a new goal. I have finally become a gym girl good and proper. Not just evening runs and gentle yoga but classes. Step, bootcamp, et al. And I like it! Who knew? So my goal is to have my first six pack by February when I turn 44. Ha. We shall see.

Also started Deepak Chopra's 21 day meditation challenge yesterday. Really liked the first one... has anyone else done one? Hoping to calm some of my own anxiety with this yo yo life. I suppose I had to realize at some point cigs and wine weren't teaching the kids healthy coping mechanisms... ha.

A few pictures of the kids. First at a Peter Puffin concert at the library and on their bikes. Ella is still trying to ditch the training wheels. Love all the firsts again at this age for her...and Ella and I on the beach.

Next post will be a school update! Cannot wait. Love a new school year, love Autumn... all is good.

Determination is a beautiful thing.

noreply@blogger.com (Sharon) — Sat, 16 Jul 2011 22:57:00 +0000

I posted this on facebook, but for those that don't partake of that wacky social media type stuff... guess who passed her RedCross Level 1 Swim kids?

Sheer determination. That's our girl!

(excuse the short suit! She is so long and lean that she needs a size 4 suit to fit but it makes for a short torso on her 6 1/2 year old height.)

Another school year gone!

noreply@blogger.com (Sharon) — Sun, 10 Jul 2011 17:06:00 +0000

I guess I need to accept the fact I am a once a month blogger kind of girl. And really I am okay with that! Any more frequently usually means things aren't going too well. I would rather the infrequent updates thank you very much and if it's all the same with you! :)

So without further ado here is July's episode.

Ella is going into Grade Two!! EEEK! Wonderful and exciting. We ended this school year on such a positive note. I could not be more grateful. Thinking of the little girl who hated school and would cry, fight, beg, scream not to go. Who would punch you and scratch you and kick you and beg to just die. The girl who would weep for hours that she just wanted to "go home." And now seeing the same girl who is bright and smiling, friendly and cooperative, shy but not too afraid to speak up in class and to reach out to friends. Who aced her report card. The girl who no longer has constant accidents at school. It is astounding the difference. She will still have her education plan but she will be starting Grade Two without an aide. She can dress herself and find her things now in her desk too. She does such basic things now like sleep and eat!

I had such mixed emotions about starting her on the two meds. The anti-anxiety and the anti-psychotic. It was so heartbreaking and difficult for me to come to terms with. I am not sure why that has been the most difficult...I suppose because happiness, peace, contentment, joy in the simple act of living is really what it all comes down to, yes? Doesn't matter if you have all your limbs or not, a long or short life, etc. if you are just miserable beyond belief. We had to up Ella's meds recently but I am okay with that too. Her Psychiatrist said to make sure we are not afraid of that necessity. We her family, her teachers, her Doctors, all can see the amazing difference in Ella. And that is all that matters. Full stop. The love that pours out from Ella now too is astounding. And for all of this I will be forever grateful.

Here is Princess Yaya on her last day of school

Ella started swimming lessons last week too. And again, the girl who was terrified of water in the bathtub now can pencil glide and duck her head right under. The week didn't start off so well as she was in the regular pool. Between her temperature issues and the weight loss now she just couldn't handle it. She turned blue after about 15 minutes and would start shaking so hard she was too stiff to even try and swim. This then would set off other symptoms. She was forgetting she had even been and losing other parts of the day. She would play with Allan for a good half an hour and then after not seeing him for bit was shocked when she did see him again. Does that make sense? She would act like it was the first time and would consistently forget he had already come home and they had spent time together. She had horrible stomach aches each night too and a lot of difficulty sleeping. Her stomach was keeping her awake for hours.

The pool is wonderful though and what we did is move her to the warmer kiddie pool with the preschoolers. She doesn't mind and they will still grade her for Red Cross 1. And as I said, she is loving it. She is just bound and determined to swim now that she realizes her friends can. I am very proud of her. It is inspirational to watch how she just goes and really doesn't care about the hows and whys. She just does it in whatever way will work.

So as you can see in the pictures Ella is carrying a Rapunzel doll. Rapunzel has usurped Ariel as Ella's favourite princess. She loves to sing the songs from the movie so I will leave you with that. Please have a look! I know I am bias but it really is sweet...

Ella singing I see the light from Tangled

Here's to a wonderful Summer!

noreply@blogger.com (Sharon) — Fri, 03 Jun 2011 19:46:00 +0000

Best picture ever.

or is it this one?

or this??

Or maybe instead of the excitement and anticipation of it all...

it is these pictures that capture the vacation best...

Completely exhausted at the end of day one. :)

The Disney magic did not disappoint. Never mind overstimulated girls, heavy rain, lost wallets, et al. What will be remembered is rollercoasters, dancing with Goofy, touching the sky from a Mickey Mouse ferris wheel, cotton candy in the air and the spun sugar being washed down by slushy cherry lemonade. Music. Laughter. Doing the twist with Mickey and Minnie. Counting ducks from a paddlewheel boat. Shivering in the haunted Mansion. Screaming at the yetis on the Matterhorn. (really, where else can a woman my age be shrieking with delight alongside her small children?)

And this. A little boys wonder at seeing his favourite characters come to life before his very eyes. With his big sister by his side the whole way.

Of course Cruella deVille was a bit of a damper what with wondering where the overgrown rats were who run Disneyland.

And wondering loudly why Ella had yet to teach her little "puppy" how to fetch. She kindly did it for her by tossing Alex's autograph book aside and commanding him to fetch it.

Poor Alex thought she was going to follow him home!

And Ella. Wow. That girl loves her some rollercoasters! She would have just gone over and over and over and over. You couldn't touch her or talk with her half the time but the look on her face was just pure joy and exhilaration. She loved it! Hands high over her head, hair streaming in the wind and not a care in the world. Brilliant.

It was wonderful family time.

Now we are home and getting back into the routine. Trying to wrap up the end of the school year. Both kids are sick again. Fevers and colds. Doctors appointments are up to date for a bit and things really are about the same. Alex has had his motility med upped and his reflux med doubled in dose. So far so good. His weight is steady in the 50th percentile and he is still on the tall side in the 75th centile.

Ella gained 400grams which is great. But we saw GI as well and he is more concerned about the overall loss. We have been seeing him for two years now and in that time while she grows steadily in height (staying in the 50th percentile) she is down to the tenth centile in weight. We met with the nutritionist again and while reassuring in some ways it wasn't in others. We are already doing everything we can and Ella is eating a relatively balanced diet. GI has given us six to eight months to get her up a kilo to a kilo and a half. (three pounds basically) If she doesn't gain that much he said we will have to "do something". I don't mean to sound ominous! lol! We just didn't ask what. I honestly don't know as it seems we have tried everything... but I do know I don't want to borrow trouble again so we will just keep trying and enjoy the Summer. Fingers crossed she just does not drop again in the meantime!

Alex loved Disney so much... he is diligently saving for another trip right alongside Ella. :) It's pretty sweet as his stock answer for every problem these days is "No worries Mummy! No worries! We will just go back to Disneyland for one, two, three, four, six days!"

I wish we could my boy. I wish we could.

Blah blah blah

noreply@blogger.com (Sharon) — Mon, 09 May 2011 15:57:00 +0000

Almost a month again since I updated! I think about the blog often. And I inevitably end up thinking how repetitive the posts are. They usually go something like this.

Blah blah blah Ella blah weight blah blah sweet and smart blah blah poop blah blah Alex blah reflux blah blah weight blah doctors blah blah Disney blah blah blah.

Right? You all know what I'm talking about.

But. A quick update today nonetheless. Ella has been having bm accidents for months now but after playing with her meds a lot I think...think we are okay at the moment. Just waiting to hear back from the nurses about our weekly phone updates. Her weight is steady I believe. Hard to tell. I don't think she has gained but she hasn't dropped again either. She feels good if that makes sense and she is eating. (In fact one of my best moments yesterday was seeing her eat roast chicken so fast there was gravy dripping down her mouth. :) ) some mood issues happening again but after her Psych appointment last week we are going to try and leave things until the end of June.

We have been discharged from pulmonology. Yay! On an as needed basis. Ella's sleep study had some "abnormalities" but nothing that would require more intervention than medicine to help her sleep. Which she is already taking so...all good.

Alex is struggling with his reflux lately. We haven't been able to cut his pediasures down to three. Four is okay. He complains of tummy aches a lot, eats and then lies down clutching his tummy saying "it's too spicy!!" he is also choking at night that it is waking him up in tears. Overall though, again, nothing too bad. Really this family is in a good place!

Two weeks until we see the Paed and three for GI.

And in case you thought I forgot about the "blah blah blah Disney" we are going again. On Sunday!! Ha! Between airmiles, a seat sale and a hotel sale it will cost us half of what we anticipated. We have the money, so we are just going to go for it. We leave Sunday and return Thursday. I feel good about it. I don't think Ella will get as sick this time. We hope not anyway. Things are quite different with her anxiety so well managed. Fingers crossed! We cannot wait to show Alex and Ella is just beside herself with excitement. Really looking forward to it.

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Jasper and good news!

noreply@blogger.com (Sharon) — Mon, 11 Apr 2011 20:11:00 +0000

Kids had a great time in Jasper! It was so beautiful and so needed. Allan found a new way to have them enjoy the drive up. You know, really experience the scenery, wind in the hair kind of thing. Heh.

What a gorgeous place though, I mean really!

Ella's favourite tree. The fact she loved this one says so much about her...

We saw elk, bighorn sheep, caribou, deer, etc. But Ella had a penchant for all the stuffed, statue, and painted animals she could find. :)

And last but not least Jasper the bear and Ella.

So lest you think we left Alex strapped to the car, he just didn't want to be photographed too much. He got quite sick on the trip but he saved the worst for home so that was at least good. He did enjoy himself somewhat. He especially liked the outdoor pool at the hotel.

Ella was really worrying us too as she was just not eating much and had dropped again. We have been dealing with some constipation issues too, enough that we ended up back at the Paed. today. The good news though is Miss E had been eating again this last week and managed to put on 300 grams. Yay! Yay! Yay! Long may it last. She is back up to 40 lbs exactly.

Now is when we flip though. ;) Alex is not eating much and just wanting pediasure again. Hopefully though, like Ella, it is just residual poor motility from being sick. Always takes at least a few weeks for their bellies to get back on track.

They are both outside as I write this. Playing in bird seed. Ella is taking care of Alex. It is so very sweet... Her attitude continues to be nothing but wonderful. Love them so...

Here is Ella right now doing what she loves best in Spring. Collecting lady bugs.

Alex apparently is still mad at the paparazzi.

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Doctor update

noreply@blogger.com (Sharon) — Wed, 23 Mar 2011 16:40:00 +0000

Just a brief update after yesterday's appointment.

I was being optimistic with Alex. He hasn't actually put on any weight but BUT he hasn't lost any! So he has maintained nicely and with food instead of pediasure. That is very good news and the Doctor was very pleased.

Ella unfortunately has lost another pound. She is down to 39 now. (it's hard in a variety of ways. For example she technically shouldn't be in her booster seat anymore as she doesn't weigh enough now! But we can't very well strap her back in a baby seat... :( ) She has dropped a few centiles now just since autumn and is down to the tenth. While this obviously isn't good, we still have a little bit of a buffer and are going to give it some more time still to see if we can't at least keep her stable. We will go back at the end of May and if she is down again we will have to do something. What, we still don't know, but something will have to be done.

So for now both kids are still under strict Doctor's orders to eat whatever they want whenever they want! :) Makes for some interesting combinations... Right now the drink of choice is vanoclaberry milk. Which is simply milk with vanilla, chocolate and strawberry syrups. Also really feel like a short order cook! Both kids don't eat much at once but they snack alllll day long. Can't say we're not trying!

We went to the Royal Alberta Museum the other weekend. Both kids loved it. Ella had to pose for pictures in front of every exhibit. She is such a ham. I have no earthly idea where she gets it from! Heh.

Now roll on vacation time!!

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As time goes by

noreply@blogger.com (Sharon) — Sun, 20 Mar 2011 18:48:00 +0000

I am three hear me roar!!

Young Master Alex turned three yesterday. So hard to believe! We had a wonderful day. It was the first time Alex picked the place, the guests, his cake, etc. He's pretty funny! He invited one of Ella's school friends who has a four year old brother, the two neighbor boys who are 9 and 11, (their Mum is the one I go on the Women's retreat with) and a five year old girl who goes to a drop in play group we attend. (he is madly in love with said girl. One time at play group he started shaking as he just couldn't contain his wee self. He finally reached over, grabbed the girl in a hug and blurted out that he loved her :))

We went to an indoor play gym and then home for food, cake, etc. A good time was had by all.

Health wise. The upped meds have definitely helped Ella. Just round the four week mark you could see things slipping a bit but still an incredible difference overall. Slowly we are coming to terms with things but it is still a difficult time for sure. She still isn't gaining weight either. She will lose, then hold, then lose, etc. We go back to the Paed again on Tuesday so I will update then.

Alex has drastically cut back his pediasures. He has none some days and only two or three other days. He isn't very happy about it but he is really trying. He seems to be gaining a good amount of weight too! He is only about four pounds shy of Ella now.

Both kids have had colds again and Ella has been barfing overnight for about a week now. Hoping it is just residual poor motility from the cold!

So. We have decided to take a vacation soon. In a few weeks we will head to Jasper. Me first by train and Allan and the kids will follow. Winter still has us in a firm grip (isn't today the first day of spring? Sigh) so we are going to get out and just enjoy it. Our sanity is begging for it. It has just been so much and we are so cooped up. Still dreaming of Disney but will push it from Autumn into the new year. Hopefully once the weather warms up the tension will ease. Lazy days of summer and all that.

Love my kids and am looking forward to some R&R with them. :) at least I can hold them tight. No small feat in this world these days...

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Dreaming of Mickey

noreply@blogger.com (Sharon) — Wed, 16 Feb 2011 20:35:00 +0000

Well we are back in the deep freeze after a very nice bout of sunny warm weather. It was just enough to have us dreaming of Spring! Allan and I celebrated seven years of marriage on the 14th and I turned another year older on the fourth! (Don't like to be reminded of that one... Heh.) thanks to all for the well wishes. xx

We saw the Psychiatrist this past week for Ella but postponed the trip to the Pediatrician until next week. We feel Ella is doing okay weight wise as is Alex. Ella has been struggling again with depression and anxiety but the Psych. upped the dose of both her night time sleep med and her anti depressants so we shall see. There didn't seem a point to going to both Docs within two days of each other. At least this way we can at least have a week to see if the new doses help at all. I sure hope so... It is hard to see your child so sad...

It has been difficult for all of us really. It is a new reality we are living and it is one of the most difficult for me to come to terms with. I am finding I really have to grieve a lot of it. She is such a brilliant brilliant child. To see her struggle is heart wrenching. I know we will get through this but it is new and tricky to navigate at the moment.

I went to a women's retreat for Mum's of special needs kids at the end of January. There were some other some other Mum's who had kids with some of issues Ella has or similar. WOW! What a wonderful thing. It was so empowering to feel understood! We spoke the same language... (just to be clear, at the moment Ella is only being "labelled" with Dysautonomia, General Anxiety Disorder, Sensory Processing Disorder and depression. She still has problems with her stomach motility, reflux, constipation, continence, balance and endurance, insomnia and migraines both head and stomach. She is also profoundly gifted.) These Mums even have a support group but they are too far away from me! I should start one here...

Needless to say we are saving our pennies to do Disneyland again! (extra thanks again to all you fabulous family who have contributed to piggy banks! They are decorated with mouse ears and you will be happy to know Miss E saves every penny! Even her allowance, which we match if she saves for a month, has gone into the bank. :)) This family needs something to look forward to and work towards. And the house of mouse is just what the Doctor ordered. I cannot believe it has been almost exactly one year since we went last. I seems like eons ago and yesterday at the same time... Cannot wait to return!

(Oh and if any of you are holding out on me and can invite us to Club 33, we are aiming for an Autumn trip! ;))

Magic...

noreply@blogger.com (Sharon) — Thu, 20 Jan 2011 23:33:00 +0000

Hope everyone is having a wonderful start to 2011!! I cannot even believe it is almost the end of January...

We have been pretty much in a holding pattern here. Two week visits with the Paediatrician, weight moving down or holding, moods worsening with Ella and generally trying to stay sorted.

The long and the short of it.

Alex just gained a bit of weight. Yay! Now we will try and cut his pediasures down to four a day. He is doing better again back on the Cisapride but struggling with reflux given how much liquid he has been taking in! Usually six or seven cans a day plus some juice and water. We are really trying to get him to eat but not having huge success. The fact that he knows how, he can swallow, etc puts it in the category of an aversion so the feeding therapy program at the hospital will not take him. Dr. C is trying to find some other community based programs we may be able to try.

Ella about a week and a half ago decided she was done with pediasure and vanilla milk was the way to go. She also gained a half pound. Double yay! She is eating a great deal more. So far all junk, but that is what we are to do right now. Just grateful she is eating at all. And by junk I mean white bread, crackers, sugary milk and Mac and cheese. :)

Her moods have just become so volatile... It has been heartbreaking and once again difficult to write about. It seems she is struggling with some type of anxiety disorder and we don't know how much this plays into everything... The sleep med we tried in the daytime didn't help in the end. Today we started her on an anti anxiety med. She will be up at a full dose in a few days. We see Psychiatry on Feb.14th and will assess how it is doing. I have such a struggle giving anti depressants to my six year old... But it is what it is...

We have been given a reprieve from our two week visits with Dr.C, barring things getting worse in any way for either child and return on the 15th of February.

Allan's back is giving him a lot of trouble since he got clipped by that car in December and I am just getting over a nasty sinus infection, we got the most snow since 1971 dumped on us but hey!

So really don't want to be a downer...but did want to update for those wondering if we have dropped off the edge of the Earth. The answer would be no, but we have definitely been in our own Universe! Heh.

Onward and upward I say! xx

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Happy Ho Ho Ho to you.

noreply@blogger.com (Sharon) — Tue, 28 Dec 2010 04:00:00 +0000

Happy holidays from our family to yours.

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Merry Christmas!

noreply@blogger.com (Sharon) — Fri, 24 Dec 2010 00:27:00 +0000

Wow. Hard to believe Christmas is here! This year has positively flown by... Really excited with Alex and the holiday. He is old enough now to get it, but is not completely as he doesn't really know what to expect! Every time he says something or does something he shouldn't, like chase the cat, he goes off by himself with a huge sad face mumbling about how he is a rude boy and will only get coal this year. He has decided this himself no matter how many times we try to explain he is a good and sweet boy who will not be forgotten just because he doesn't mind his manners sometimes or has bad behaviour. He is such a sweet sensitive little guy...

So we went back for another two week follow up with Dr. C on Wednesday. Both kids have lost weight again. :( before deciding to go back to Cisapride with Alex we are going to max out the domperidone for the next two weeks and try and get this feeding therapy going. Regardless of which motility med we use with him we will make no other decisions until that is tried too. Another issue he was having is constipation. The domperidone was not helping on the lower dose so he was having many many accidents from being too backed up. He is not happy about that!

Ella's reflux is doing better back on the full dose of Nexium but that is about it. The med to help her sleep is just kind of "eh". I would say it is helping a bit while Allan would say not at all. So really the difference is negligible regardless. Ella's moods have not been good to say the least so the med to help sleep is also now being given in the morning to try and even out some of her bumps and lows. I cried when the doc said to do this. I am more scared of it than anything else. I don't want to squelch the beautiful, free, vivacious spirit she is... We started it this morning and she is kind of blasé today. Sleepy and kind of whatever. Again, we will give it some time and see.

There was some talk of tubes too at the last appointment but Dr. C isn't sure it would work with the kids. The reason is because it is Neuo based. She feels that we may not be able to alleviate the pain just by feeding directly into the intestines as the brain is causing the pain regardless of if there is anything in the stomach or not. So it will act like there is food in there even if there is not. Does that make sense?

We will see when we go back again in two weeks.

Alright. The family is back so must run.

A very Merry Christmas to each and every one. The support you all give is invaluable. Here's to a peaceful healthy new year.

Peace.

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Holding steady!

noreply@blogger.com (Sharon) — Fri, 10 Dec 2010 03:27:00 +0000

Next two week follow up at the Paed. today. Overall very good! The best news is Ella didn't lose any more weight. She didn't gain but is holding steady. Her reflux has become a big issue again though, keeping her up many hours overnight. It was decided too much too soon and we have upped her Nexium back up to its regular dose. We also started a new med to help her sleep. Finally! The Psych prescribed it a while back but it was nixed due to interaction with Cisapride. So excited to try it tonight and see! I should help her sleep through the night by helping regulate her sleep cycles too and not just knocking her out. We have a lot of play on the dose too but are starting small.

Alex. Well the wee potato gained a pound! Cracks me up. I shouldn't laugh but sometimes you just have to! His spirit and determination is something to be admired.

We are putting him back on domperidone to give his motility a kick and hope it helps.

Next follow up is on the 22nd. Fingers crossed for a great holiday season!

Oh and guess who had her first dry day today?? Yeah... Life is good. :)

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Small miracles

noreply@blogger.com (Sharon) — Thu, 25 Nov 2010 03:31:00 +0000

We had our follow up with the Paediatrician today. It was wonderful news! The best I think we have had at an appointment yet. Ella's gastric emptying scan was all in all okay. Her stomach didn't move anything out for a good hour but then once it got going it was within the normal range by the end of two hours. This is huge for her!

In perspective, last GES only 9 % emptied after 90 minutes. This GES 77% had emptied after 120 minutes.

Yowsa.

Needless to say we are going to keep her off Cisapride for the time being. Not only that, we are cutting her reflux med in half. Now I should say, she is losing weight. About six pounds down now. We are going in again in two weeks to monitor it. But while it isn't a good thing, there is no need to wave the red flag just yet. We are going to up her pediasure again too if she can tolerate it. Only more time will tell.

There are other things that bear mentioning. Ella has been so bright and clear these past two weeks that even her teacher has noticed.

What exactly is happening? Don't really know. She could still be unable to tolerate and keep losing and we will be in a worse position than we were before. Or... Or or or. I just know I want to enjoy this and we are so very grateful. It is the "healthiest" her GI system had been. Ever. Small miracles.

Master Joe. Off Cisapride too. Good but not as good. Still moderately delayed emptying, (so better!) and a good deal of reflux showed up during the scan. He has lost some weight too, though not as much. He has though been generally more miserable. Complaining a lot about his tummy and refluxing a lot too. And if you put him on the wrong angle, out it comes.

We are going to keep him off too though, as he doesn't eat either way. Not touching the reflux med though! Dr. C is finally going to get some feeding therapy going for him too.

And now I must sleep. :)

Again, most of you have seen this now but I love it and want it here. Another wee gift this Santa was... I cannot believe how well the picture turned out given our state just prior!

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Happy birthday Ella

noreply@blogger.com (Sharon) — Mon, 22 Nov 2010 04:32:00 +0000

I have been trying to think back. To think what I was thinking when Ella was born. It is more difficult than I thought after just six years. I do think, that when children enter your life it just completely smashes anything you possibly thought you knew prior. The Hadron Collider should just collect some parents and kids if they really want to get enough energy colliding to rival the big bang let alone replicate it.

I used to fantasize sometimes about what it would be Iike to be a Mom. I would picture a daughter and on my most fanciful days I could see exactly where we were, what the weather was like, what she was wearing even...
(let's just say it was nothing close to our reality.)

I do remember being pregnant with Ella and not sure I was. Being scared and wondering how I could possibly be a Mom at all, let alone a good one. I remember holding my tummy tight in the shower and just praying with all I had. Just pleading that if it were to really be, let me be the best I could be to this tiny soul inside me.

Suddenly, suddenly, she is here. I remember stopping at the nurses station on the way out of the hospital and hovering even when no one deigned to look at us as they were too busy bringing other tiny souls into this world. Was there something we needed to sign? To fill out? To prove even? Nope. Take her home. She's all yours. Good luck!

Wheesht...

It dumbfounds me every single day where life has led me. It dumbfounds me to the extent I look around some days and I don't know where I am. Or how I got here. I could not imagine something, someone, could alter me so completely in every possible way.

Then I look into her eyes. I see Allan. I see me. I see our parents, our grandparents, theirs and theirs and theirs... But most importantly I see Ella. That is when life just seems to soften around the edges. It doesn't matter where or why or even what. It just matters that it is. She is. And I am profoundly humbled and grateful for six years ago and all that led me here. To her.

Happy Birthday my daughter.

Dry medical update number 364

noreply@blogger.com (Sharon) — Sat, 20 Nov 2010 04:40:00 +0000

Two days after my last post young Master A got the barf bug too. So was it the meds with Ella? Probably not but who really knows anymore...

Both kids proceeded to get colds about a week later but all in all not too bad. Considering how some bugs hit them? We'll take it!

Saw the Paediatrician again a few weeks ago too. Our experiment with cutting Ella down to two pediasures a day didn't go so well. She is losing weight. After the discussion with the sleep doc and then Dr.C (paed) it was still decided to pull both kids off cisapride to get back to some kind of baseline. It has not been going great but again, could be worse. Both are barely eating and Ella has been dealing with some extreme pain in the evenings. They both had ECG's again and gastric emptying scans today. We see Dr.C again on Wednesday to reevaluate.

Sorry so dry...been meaning to update but Allan has been away again and I am still so tired! Have not managed to catch up on anything this past month. Really just want to leave it behind this weekend and enjoy Ella's birthday. Six years ago tonight it all began. I cannot fathom my life without her...

Oh and remind me to post some pictures of Alex post "makeover" by Ella! Funny funny funny...

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Pixie power

noreply@blogger.com (Sharon) — Tue, 02 Nov 2010 17:23:00 +0000

Well a few hours after I wrote the last post, sweet Ella got violently sick all night. It was a doozy! She perked up Sunday and managed some trick or treating but was ill again by last night. Lots of arm pain and tingling too. She became convinced it was her new reflux med and started refusing it.

I called the nurse this morning and after speaking with the Doctor they are switching it yet again. I guess it is rare but some kids do get a reaction the one we were trying. So fingers crossed we can get some stability back!

On a more fun note we have a new addition to our family! A tiny black barn cat named Pixie. She showed up on Halloween believe it or not and wouldn't leave. When she was sitting outside our door meowing on Monday we gave in.

She has her shots now, has been dewormed and is the happiest most loving little thing ever. Ella is just beside herself with happiness too. I know we really shouldn't be taking more on but feel it was the right thing to do. And as I said Ella is over the moon about her new friend and she deserves some happiness. I don't know which one loves the other more...

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You are getting sleeeeeepy...

noreply@blogger.com (Sharon) — Sat, 30 Oct 2010 20:12:00 +0000

Never a dull moment I tell you what! First off Allan has recovered nicely from his pneumonia. He was home a couple of days then left again for business. We took Ella in to see the sleep specialist on Wednesday and what a great appointment it was. I just love this Doctor. I love someone who really tries to appreciate Ella and see HER big picture. Much was discussed including different med options. She switched out her reflux med for a new one as she feels it is more stable and wants to completely eliminate reflux from the sleep issues. The suspension we were using apparently really loses effectiveness the closer it gets to it's expiry date, which is one month. She said with kids with autonomic issues it can be enough to trigger them. So kind of a double whammy. She also pulled propranolol (which made me almost want to cry it was helping SO much!) but little Miss has been having terrible nightmares and she said it would be from the med. Ugh. The stomach pain is already making it's merry way home in Ella even though we are still at a half dose. She also brought up Clonidine which was talked about with Psych too. A big problem is the Cisapride though. Most of the drugs that could be helpful to Ella interact with it. She said she would like to try and take her off the Cisapride, which we would love. Allan and I have been talking about it for awhile now.

The main thing is she wants to come up with a good arsenal for Ella. So not always prophylactics, but spot treatment too. And really to try and hit as many birds as possible with as few stones as possible. The reality is becoming Ella's GI issues are not first and foremost. They are getting overshadowed. We all need to step back and go big picture. She wants to talk with Ella's other Doctors too and not step on toes. I just hope it doesn't take forever... We talked about the fact we hadn't had the sleep study done yet and how we weren't too worried as none of us expect to see a black and white answer from it anyway. (she said too that Ella will be at MIT by the time she is 15 and Allan needs to teach her poker but that is neither here nor there! Lol) By the end of the appointment she said she was going to try and get the sleep study done in the next few days. I think to rule things out so she can get moving on a plan.

Well wouldn't you know it, 3:30 on Wednesday, Allan away, just running out to the bus stop, I get the phone call. Can you be at the hospital for 7? Ack!! With much help (thank you all! Where would we be without grandparents?) we did it. Ella tolerated it surprisingly well too! She was asleep by about 8:30 (on all meds and melatonin) but she did her usual wake up around 1:30. She had sat up and was pulling wires out but seemed fast asleep. She was awake on and off for awhile. I am not too sure as the techs were with her. No Mummy allowed to try and lull her back to sleep!

It was funny as I asked the tech at one point what time it was and she said 2:30. Then she said "oh and Dr. W (the sleep doc) was just here, she said to say hi!" I thought oh that is nice! She is such a nice person... It finally occurred to me to wonder what she was doing there when we had seen her in clinic at 9 that morning! Turns out the sleep Doctor doesn't sleep. Kind of ironic!

Anyway the next morning I said, you can't tell me anything right? The tech said no and I said that is okay, I am sure it was fine. So she said well there was that one thing but Dr.W was here and she saw it so that's a good thing! What that means, I have no idea. At the very least Ella slept and didn't exactly like she does at home. We shall see! They were all so so nice and made it as good an experience as possible. Ella even came home with a fleecy "magic" pillow and a goodie bag full of treats. Here are some pictures of her getting wired up.

Ready to go!

Yaaaaawn...

Moustache time!

So so mad!

Asleep halfway through hookup.

Ella managed to make it to school on time after leaving the hospital and it was a skating day. Allan made it home so I was lucky enough to go skate with them. Well, skating may not be the exact right word. I don't know what the word for hauling two grade one girls around the ice for 45 minutes is...

And though most of you have seen it, here is Ella ready to go to her school Halloween party yesterday. Love this picture!

Happy Halloween!!

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He's baaaaaaack!

noreply@blogger.com (Sharon) — Fri, 22 Oct 2010 22:56:00 +0000

Sorry to not have updated before. It has been very difficult managing Ella, school, her appointments, new meds, hospital visits etc. Not to mention the lack of sleep with my two wonders! It is enough they don't sleep well but they don't sleep at the same time either! Allan and I usually split shifts and I tell you what, I have sorely missed my wingman. Felt a bit like my right arm had been cut off.

I know I know, woe is me. Poor husband feels like his chest has been cut up.

So. Allan. The long and the short of it is he had very very bad pneumonia in both lungs. It was very serious and very scary. Let's just say it is a good thing he is young and strong. A very good thing. It took about 24 hours in hospital for him to turn the corner. Once he did it has been onwards and upwards. All were impressed with his recovery and the speed of it.

You know I took the kids to see him on Wednesday when he was a bit better. Ella was sitting in bed with him and she leaned in and whispered in his ear "you look different when you're sick Dad. That's not your face." Alex lasted about five minutes before he was desperate to leave. I think that was the hardest from my perspective. Not only having to do all we both usually do but to not be able to sit and comfort Allan. It was torture. And then to have to be upbeat with the kids.

The main thing is he is home. Picked him up early this afternoon. He is stocked up on medications, inhalers and various paraphernalia, plenty of books and a nice new ducky humidifier. The Doctors have given him the clear to fly Monday morning (ugh. Not looking forward to that, he doesn't com me home until Thursday) unless he takes a turn for the worse.

Thanks again for all the emails, etc. The support has been so welcome.

I am somewhat superstitious but I am going to say it anyway. The universe can throw what it wants on this family. We can take it. Backs to backs to backs to backs.

I am just glad my husband is home and well on his way to annoying me with his dirty laundry everywhere. I don't want to ever miss those socks.

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Small update

noreply@blogger.com (Sharon) — Tue, 19 Oct 2010 23:52:00 +0000

No blood clot yay! There was a lot of concern so that is good. Poor guy is still so so miserable. They are upping the antibiotics and have him on a good steady drip with lots of pain meds. One of the worst things is how claustrophobic it is making him feel. He is on o2 too so hopefully things will turn a corner soon.

Thanks so so much for all the wonderful emails. I am absolutely getting help from my Dad and Step Mum and have had offers of travel from Grandparents too. I cannot tell you how much I appreciate it. It is hard to not be with my beautiful husband and keep upbeat and positive with the kids... So thank you thank you. Am going to see him in about an hour so I'll post again.

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Anyone have a spare iron lung?

noreply@blogger.com (Sharon) — Tue, 19 Oct 2010 20:05:00 +0000

Ugh. Ugh ugh ugh. Grandparents first and foremost, I am sorry to tell you this way but at this moment it is the quickest and easiest to get it out their.

Allan is in the hospital special care unit with double pneumonia. They are running a bunch of tests, he is having a cat scan as I write and is being treated with very strong iv antibiotics. He is hanging in their but in a lot of pain.

I am trying to see him, juggle the kids and their appointments and it is a bit overwhelming to say the least. I will keep you updated here and I'll call as soon as i can.

Hugs prayers and love xx

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