A step away from the norm.

This is not going to be a typical blog about the progresses of our life around the house. Instead I'm going to blog about something that happened recently that I found to be a bit disturbing. For those that know me, know that I do not like nor tolerate mass blanket statements, regardless the topic. Nothing in life is so set in stone. Nothing in life is so black and white. Everything has a hundred shades of grey.

The other night I commented on a post that I felt to be wrong. And I was shamed for my beliefs in my views. A statement was made that my child is the way that he is because of something that I did/ate during pregnancy. That his epilepsy could be cured with more natural means. That we are so dependant upon pharmacuitcals that I was blinded by anything else and of course I was defending big pharma companies because my narrow vision refused to allow me to see anything else.

A medical "professional" expressed her views in a way that was just shallow and tragic. I calmly replied to the post with exactly what our situation was. Why we were on pharmas, why we believed in them. Because it if wasn't for pharmas, we wouldn't have Dinky. Epilepsy is not something someone can cure. Once you're epileptic, you're ALWAYS epileptic. Much like once you're an addict ALWAYS an addict. I had informed these people that the use of CBD oil is an option that is now easily accessable if you know the right avenues to get it. Yes, people all over turn to pharmas a lot more quickly than they should be. Yes, there are more natural methods out there to help curb health problems. Yes, there is a link towards clean eating and taking care of yourself that will help solve health issues. I know this. But there are those out there, millions upon millions of people that depend on big pharma companies to live.

Do I wish there were more natural treatments for Dinky? All the time. Do I wish that our life didn't have to revolve around pill crushing? The formula making? The hospital living? The therapies? All. The. Damned. Time. But if wishes were pennies, we would be so, so rich. Wishing for things to change doesn't mean they will. Wishing for things to be different turns into a big cycle of loathing. Of fear. Of worry. Of what-ifs. I do not have time for that. If I were to spend every moment of every day wishing for things to be different, I would miss out on so many of the things that Dinky CAN do. I would miss out on all the things that ARE Dinky.

Yes. Big pharma companies could and should fund natural approaches so that not everyone needs to rely and depend on them. Yes, it is because of big pharma companies that there are all kinds of problems with drug-resistant strains of everything. Yes. I know this. I am not an idiot regardless of what some people think. I do not agree with prescribing a pill for every single cough or rash. I do agree that holistic methods should be taught in school and used in conjunction to "traditional" means of medicine. For a lot of conventional medications there are more natural treatments. I know this. I am not an idiot.

If turning vegan and clean eating would solve the massive world health crisis, I support that. I am not against a natural remedy when it works. My older children get more holistic approaches when they're ill. However, that has no place in Dinky's life. I pointed all of these facts out in a calm and educated manner. Yet I was belittled. I had asked a couple of times for suggestions for more natural approaches towards helping seizure management. My pleas were ignored. You would think that if you have some kind of information or suggestion to help ease some of the troubles that my littlest is dealing with, they would be suggested. But no, I was attacked.

I was told that I took a statement and blew it out of proportion. That I took offense to a statement were none was to be had.

My views on certain things differ from others. I am okay with that. I never shame anyone for their views on anything. Because I am human. And I have compassion. But these people would not take me seriously. Why?

Because I am a meat eater. I am a murderer. My children are growing up in a home without compassion. I am no better than a racist. Because I eat meat. Therefore I am the worlds worst person, because I eat and enjoy animal flesh, I must be uneducated to the plight and suffering of animals that die. Of the animals that are abused and mistreated in the name of commercial farming.

Now, let's get one thing straight. I enjoy meat. I DO NOT agree with animal abuse. No animal should suffer. But because I eat meat, I agree wtih animal abuse. Because I eat meat, I'm part of what's wrong with the world. Because I eat meat, I lack compassion and empathy. I have no heart.

***(I will take this moment to apologize right now because I try not to cuss in my blog)***

FUCK. THAT. SHIT.
No one has any right to judge my compassion (or lack there of) if they have no actual part in our lives. No one has any right to judge my empathy (or lack there of) if they have no idea what we deal with. Every. Single. Day. No one has any right, period, to judge me for the choices we make as a family unit. Of the choices I make for myself. My family. No one has any right to judge ANYONE because of their views. Yet it happens. All the time. Every single day there are people out there judged because they view things differently. Because they believe in something different.

Guess what.

I do not care what you believe in. You believe in something. You believe in God (whatever flavour you believe in, good for you!). You believe in animal rights. Hooray for you! You believe in the purple sock wearing-cheese eating-burping pig from Saturn? Okay I think that might be a little strange, but SO WHAT! I don't care.

However, I do have a problem with zealots. They're everywhere. Those people that believe in one thing so hard that the whole world has to be wrong. They'll kill for their beliefs. They'll die for them. They will spend hours every single day fighting those that think differently. That believe differently. That feel differently. That eat differently. They'll judge swiftly. They'll judge harshly. They'll act out in terroristic ways. They have no problem murdering. Of hurting. They do not listen.

That I do have a problem with.

Vegans that reach Hitler level of crazy have no sense of compassion towards humans. It's like they reserve all their compassion towards animals and forget how to act like decent, respectful humans. That pisses me off. Everyone has a story. Everyone has the moral right to choose what they feel works for them. Regardless of how you disagree with their choice, you are no better than anyone else.

Comparing someone that eats meat to being a racist? Please.

If I'm racist because I eat meat... doesn't that make Hitler level Vegans... ISIS?

They act no better than them. It's disgusting. I eat meat. They eat plants. I don't care. Save the world. They're entitled to their opinions. I think they're bat-fart crazy in the way they go about it. If you believe in something, educate. If you want people to learn, educate. Do not judge. Provide facts and ideas.

And my whole blog post got turned on itself.

But don't you know that Dinky's problems would be solved by clean eating. By natural means of medication and care?

My whole point is this:

I believe in what I want to believe in. I believe that pharma companies can and do help people. I believe that the pharma companies can and should fund natural treatments. I do believe that.

But I also believe in and know for a fact that if we did not have access to pharama companies, my child would be DEAD. So I am thankful for pharma companies. I am thankful for those that turn to natural remedies. I am thankful for the activists that push so hard to get medications. I am thankful for the activists that fight long and hard to get natural treatments easily accessable to people. I am thankful for the support of friends and family that stand with us in our choices for Dinky and for our family. I guess I have to be thankful for the crazy zealots as well. Because without them I wouldn't realize how normal I am.

That being said: If anyone has decides to get all Hitler crazy in what they believe in, please, calmly exit my life. I do not have time to deal with another round of crazy.

It's been a while since I last posted a blog. I know I constantly say that and it's true. Trying to get into the habit of updating this blog is harder than it seems. I had almost 2 weeks in BCCH with Dinky and I thought about doing it then but ... I got caught up into the wonderful trap that is known as Netflix.

In the last month lots has changed. We did a video confrence with our neurologist and her team and it was decided that indeed the Ketogenic diet would be our next step in trying to gain seizure control. So we were admitted into BCCH on October 25th. The day after Tink's 3rd birthday. I cannot believe she's already 3! Time has passed so quickly that it's almost terrifying. We are part of a program that covers almost all of Dinky's medical needs so they were able to provide us with a flight down to Vancouver. When we got there we were brought to a semi-private room (hooray no baby room!!) and while Dinky and I settled into a hospital room once again, our wonderful nurses explained what would be happening over the course of the next while.

Dinky had to fast for 12 hours to make sure that all of his regular formula was out of his body. Blood work had to happen to check for all kinds of vitamin and mineral levels. We had to do blood sugar checks every 6 hours for 72 hours after starting the Keto formula.

Monday morning brought on the formula changes. For the first little while he seemed to tolerate things really well. They started at a 1:1 ratio. Tuesday we moved up to a 2:1 ratio and finally started getting ketones! Ketones are the byproduct of fat in your body. This was a good thing. Wednesday we moved up to a 3:1 ratio and there things started to get tricky. Dinky was throwing up often and he was listless, tired, grumpy...all around just plain awful. So the team came by on Thursday morning just after a case of really bad puking and told me that they had ordered a chest x-ray to see if he had aspirated anything into his lungs. Now because the Keto diet is so high in fat if aspiration happens it's almost instant pneumonia. They also decided to change out his G-tube to a G/J tube. Chest x-ray came back perfectly fine but the risks were just too high. They checked his blood as well and that showed that he was so far into ketosis that his numbers were higher than they would like to see. So he got a 30ml shot of juice to see if that would level him out a little.

Friday morning the tube change happened. The G-tube feeds directly into his stomach. The G/J mickey has 2 ports. G goes into his stomach and that is to be used for medications and the J goes into his small intestine, totally bypassing the stomach. The only problem with that is that he has to be fed 24/7 at a really slow rate.

We had a hard time getting him out of ketosis, even with another 3 30ml shots of juice. The weekend was uneventful.

Monday morning we started Keto again. This time it was decided to go up in half steps to see if he tolerates it better. So Monday was 1:1. Tuesday was 1.5:1 and Wednesday was 2:1. Blood work was done on Wednesday to see if we needed to go up another half step or if Dinky's ketone levels were fine. And they were! We stayed at the 2:1 ratio. We were discharged on Friday morning to come home!

Husby was asble to get his last week of holidays moved so that he could stay home with the big kids for a week. To be honest I was really, really nervous about leaving them alone but he proved me wrong. As he always does! I need to stop underestimating him, or I just need to stop being such a worry-pants.

So that's what happened in a really small nut shell.

Keto requires a LOT of work. Everything needs to be weighed and measured exactly so. Medications need to be specific brands. Anything that touches Dinky has to be as low in carbs as possible. I never thought that things like shampoo, soap, body lotions and baby wipes would contain carbs. They do. It's terrifying. We have to check his urine ketones twice a day which requires cotton balls in his diaper and squeezing pee onto a strip. It also involves blood work every 3 months. But if we have good control, that's all that matters.

I took a hiatus from blogging. I'm not sure if it was intentional or not but regardless it happened. Life around the house has somewhat fallen into a pattern. The big kids are learning all kinds of new things, both good and bad. School has started again and I couldn't be more thankful for it. Not only does R2D2 get a break from his family but he gets to have some normal again. This year he is in a 3/4 split class and I'm struggling to figure out how come he got so big so fast. It just seemed like last year when I was trying to wade my way through the trials and errors of solo parenting. But alas it's been almost 9 years...he is really enjoying school. He has a wonderful and supportive teacher that doesn't take any kind of garbage from her students so she has earned their respect early.

Yet he still has so many things to learn. I don't know if it's the age (my mum says it is so I'm likely to believe her!) or if it's just ... a phase -- which kind of works out to being an age thing, right? But he's gotten to be fairly sneaky and apt to lying. About everything. He is anything but a bad child so I'm not doubting my parenting -- or the apparent lack of? I know that this too shall pass. It's hard being both firm and soft at the same time. He's so sensitive that I cannot risk danaging his already fragile state, nor can I let him get away with everything and anything he wants. Though being 8 I'm sure he'd rather have everything he wants when he wants it and how he wants it. Because isn't that typical childhood? Man if he's putting us through the wringer this early can we hope that his teen years won't be so bad? Ride them hard early in hopes that you've instilled enough on them that it doesn't turn around to bite you in the ass when they're older?

Is that how it works? Anyone?

Tink is rounding out on her last week and a half of being 2 and I'm finding it hard to believe that she's turning 3 in what seems like a few hours. She's constantly making us burst out laughing with her crazy antics and when we aren't laughing we are trying not to strangle her. Or beat our heads into the wall because being a twonager is all kinds of punishment for parents. She has cemented the fact that she is without a doubt a daddy's girl. He cannot leave her. Ever. Her world just falls into epic chaos if she's not stepping on his shadow. This little girl of ours has become such a little character. At almost 3 she can count to 20, recognize all of the alphabet, knows all of her shapes and colours, animals and the sounds that they make. It's such a joy watching her evolve almost daily.

and Dinky...

Oh Dinky. We have a video confrenece with our Neurologist and one if not both of her nurses on Thursday. I'm anxious to see what this means as Thursday will mean we either get a solid YES to start the Ketogenic diet or not because something needs to happen. I would love to report that he's been seizure free for weeks on end but if anything there seems to be a huge increase in his seizure activity yet again. Just within the last 7 weeks he has had 4 or 5 tonic clonic seizures, 3 of them being on the same day within an hour. He's been on a steady dose of antibiotics in hopes that it would help keep infections and illness at bay. Yeah. It hasn't so I believe the plan is once we are done this course of 3x daily we will drop the daily dose. His g-tube has healed up wonderfully and to be honest I barely do anything to it any more. I'm not sure if it requires anything other than a quick wipe down twice a day.

As mentioned above, everything is riding on Thursday. In an email and a follow-up phone call last week it was agreed that we needed to try Keto ASAP. Except Dinky still has some coughing/reflux/puking issues which isn't exactly ideal for Keto because of the high fat content of the formula if he aspirates he could quickly run into the problem of really nasty things growing in his lungs. So Thursday we will know whether or not Dinky and I go bacn to BCCH for a week or so to switch over to this new diet. I'm really hoping it happens. We have been wanting to try keto for so long now.

Other than that he seems to be doing alright. Rolling over is a HUGE deal for us and he has finally figured it out -- well rolling over onto his belly, the geting back is hard because his arms are often in the way so I let him try and figure it out himself before mommy comes to the rescue and helps reposition his arms. but he DOES DO IT!I By himself sometimes. I make a giant deal out of it because it is a giant deal. He's probably now 21lbs! This g-tube has done nothing but be amazing for the weight gain. He's also firmly into the 12-18 month clothes and even some 18 month stuff!

We had a seating clinic a couple of weeks ago and that was just wonderful! We have a hi/lo chair for him as well as a stander and a stroller with an insert in it so that we can use the insert in other places. So that was exciting!

I've rambled enough. Time to get the big kids into bed!

Brief fill in

It's been 25 days since my last update. I've been a busy people neglecting my blog. I keep thinking about everything that I want to post on here but never get around to doing so which makes me a bad blogger.

So in a run down, life has settled back down into a wonderful web of normal. Husby is busy filling wood orders before the colder weather sets in, Tink is busy doing all kinds of things toddler, R2D2 has slowly resigned himself to the fact schools starts soon and Dinky is just... Dinky.

Our new neurologist is amazing. We had a video conference at our local hospital about 2ish weeks ago and it was discussed and decided to try a different medication while a slight increase on another one that he's already on. But the one drawback was that this new medication isn't available in Canada. Which means that it's not easily accessible. So our Neuro had to write up a special request form for Pharmacare and then had to fill something out for Health Canada so that they would release it to us for Dinky. It took a few days and then 5 days for the medication to come from BCCH pharmacy to our house.

He's also not gaining weight well again so I've started reading about purees and Gtubes because there has to be something else out there other than just formula that he can be taking so that his tummy has something else in it. Our dietician at BCCH has referred us to someone local so that we can go talk with them to see whether or not we're optimizing his calories.

School starts in 11 days! I have a hard time believing that R2D2 will be going into grade 3. Time seems to be quickly slipping away from me as it feels like yesterday that he was proudly going into kindergarten.

With the cooler weather on the horizon it means Christmas shopping is well under way. Dinky's Christmas gift is almost complete and both Husby and I have decided on the larger gifts for the two older kids. Nieces and nephews are well on the way to being finished. I've squirreled away Husby's gift. Trying to figure out what to do for my parents for Christmas while at the same time trying to make sure that their holiday is a really good one. This year has been all kinds of tough for my family all around. Christmas will be done at our house this year and I'm VERY excited for it! Maybe we'll even decorate the house!

I love the holiday. Good food, good family, food times and good memories.

Surgeries, PICU, birthdays and beyond.

I've been meaning to update this thing for the last couple of weeks but just haven't found the time to get serious about writing. Because let's face it sometimes it's easier being lazy. I will just do this post up really quickly and try to cram as much information into it as possible so that I can move on with my blogging life and not be muddled by all these confusing dates and things that have happened.

When I last posted I was talking about vascular rings and G-Tubes.

June 24th: Dinky went in for his vascular ring surgery. It was maybe 2 hours start to finish. He had an epidural to help with pain management. He handed surgery like a champ! The nurse explained to me what the blake was for and what to look for. A blake is a chest draining tube. It's some doodad that is inserted into the surgical space I suppose to drain out any extra fluid? But because Dinky had recently gotten over a cold we were told to watch out and look for chyle. A milky like substance which means they nicked some lymphnodes during surgery. And wouldn't you know about midnight when the nurse was cleaning and draining his line the clear fluid was starting to take on a thicker not so clear colour any more.

June 25th: Woke up to Dinky having an almost full collection balloon thing on the base of his blake full of, well pretty much milk (at least that's what it looked like). Monogen was started. Now Monogen is a low-fat formula which helps with the whole leaking chyle thing. Don't ask me how it works because I'm not a doctor! The surgeon that worked on Dinky the day before came in, took one look at the blake and went "Oh now THAT is being fixed!". Meaning another surgery for the silly boy. You little monkey head! Husby and the big kids arrived! It was so wonderful to see them as it had been a long almost 3 weeks away from home and I was getting all kinds of lonely and home sick for my family. We had a good visit and then he took the kids to the Ronald McDonald House with plans for coming back later for another visit before bed.

Now this is where things are getting a bit muddled.

About 6:30 PM Dinky started having some slight SAT problems. We weren't sure if it was the probe acting up so that was replaced. The nurse left and then she came back 2 minutes later because his O2 had dropped. We did some position changes and that seemed to help for a minute or two and then he started dropping again so the nurse gave Dinky some blow-by oxygen and went out to call the floor nurse to see what she recommended. Both nurses walked in and Dinky started turning a dusky colour. Immediate bagging happened.  The floor nurse ripped the call bell from the wall and yelled out CODE BLUE! (Words I NEVER want to hear again). And within a few heart beats the whole room was flooded with doctors and nurses. They sedated him and gave him a lot of deep suctioning to drain his stomach of whatever contents were in there. So the sedation happened and so did on site intubation. Doctors from all kinds of teams showed up. CTU, PICU, Neuro, Caridology all jammed up into one small room. Not to mention a bunch of nurses running around and fetching things. Blood work was done and before I knew what was happening they were bringing Dinky down to PICU. Somewhere in that time I managed to text Husby and told him to NOT come back to the hospital and that things were not the greatest. I explained what happened (as far as I remember) and what they knew which turns out to be a whole lot of nothing.

Dinky was intubated for about 4 hours before he was extubated and breathing on his own.


June 26th: Rounds happened at about 8 AM and there were all these heads of teams and residents standing around Dinky's bed in PICU and they were all coming up with and throwing out all kinds of things that could have happened. The epidural COULD have shifted and paralyzed his lungs. He COULD have seized and that caused him to vomit which in turn caused him to stop breathing. And if THAT happened it was probably reflux that was the trigger for it. He COULD Have just had too many different medications in his system which caused things to shut down. But when it all came down to it no one knew what the hell happened and the official call for it was a Post-Op Episode. Thanks for that one guys! Dinky went back into the OR to have a look-see to sew up and burn off all leaking lymph nodes. And wouldn't you know he was able to get his G-Tube at the same time! From my understanding is they don't like working on two different parts during the same surgery but I pushed hard for the tube to happen at the same time as having up put him under a THIRD time wasn't really a good option for me. So this surgery took a bit longer. About 3.5-4 hours start to finish. Another night in PICU. Nothing more to note other than I missed a dinner at RMDH with the family. That was kind of sucky.

June 27th: Recovery day in PICU. Husby texted and asked if we should do the Aquarium with the kids that day. The nurse in PICU was all for that so off we went. Now I personally don't know what kind of idiots we actually were that day but WHO THE HECK GOES TO THE AQUARIUM ON A  SATURDAY!? It was SO BUSY. Kids had fun though and it was really nice spending some time as a family out of a hospital setting.


June 28th: We were moved out of PICU and back upstairs. Lovely! I think this is the day that R2D2 flew off to the Island to hang out with his cousins and great gramma for a few weeks.

June 29th - 31st: Lots of teaching about the G-Tube and people running around trying to set up and find funding for the Monogen which generally isn't covered by the At Home Program (a program that helps people with medical things) And there was NO WAY we could afford the $52 (or was it $54?) a SMALL can of this formula. SO I was taught how to do the G-Tube stuff by our day time nurses because the G-Tube nurse never bothered showing up. The hospital gave me supplies to get us home.

July 1st: We were discharged to RMDH! Woohoo! We had to come back on the 4th for a follow-up with the cardiac surgeon and for another chest x-ray.

July 2nd: We just drove around and did random things around the city. Took Tink to Go Bananas at a mall and let her play around for a while.

July 3rd: Dinky developed a slight fever and decided he would puke. A lot. So I brought him into Emerg and handed the nurse at the desk his discharge summary which was a lot easier than trying to explain everything that happened. Registered him and wouldn't you know we were brought back into a room right away. Blah, blah, blah. Did a chest x-ray and gave him pedialyte. Cardiac nurse came down and was followed by the surgeon. He as very pleased with the chest x-ray and his nurse removed the stitches where his blake had been. We were given the all clear to go home.

July 4th: Headed home.

Really nothing of note happened when we got home. House cleaning, learning to live life again inside the house rather than hospital stuff. Ped visits, visits with his therapy team.

We travelled back to Vancouver without Tink. We had some follow-up appointments that needed to be done and we were bringing R2D2 back with us. Let me tell you, being an outpatient is the way to go! We met with a new department, Metabolics. I got a good feeling from this department. Blood work needed to be done as well as a urine sample. The next day was Cardiology. An Echo and ECG were done. His heart is great! We don't need to see them again!! Friday was eyes. Ugh. I won't get into that whole gong show. Because it was a mess. Needless to say Dinky now has glasses because his eyes still cross at times AND he's far sighted. We went and picked out glasses, did a quick Ikea trip and went to the airport to pick up R2D2. Home the next day! We stopped at Hell's Gate Airtram and did that.

We stopped off in PG and did a bunch of shopping. Back to school stuff for R2D2 for not only supplies but new clothes as well. Who says children are allowed to grow so fast?!

We got home and let life resume back into its daily norm. Dinky's birthday happened. Nothing big but a friend did make him this wonderful cake! My mum and great gramma (yes, you read that right my great gramma which means my kids great-great-gramma), Husby's parents and brother came to dinner for Dinky's birthday. It was a good day.

I guess we're caught up now on everything that's happened.

Here are a few things that I have learned:

-G-Tubes equal a LOT of puke. Lots. I mean LOOOOOOOOOOOOOOOTS.
- BCCH Nurses are world class top notch people.
- You can find new friends in the strangest of places.
- Family is really the only thing that is important.
- Don't sweat the small things.
- I'm really quite surprised I'm not an alcoholic.




 

G-Tube, Keto and beyond.

Alright.  So, it's been a while since I've had anything of note to post on here and sadly what I have to post isn't all that good. But it isn't all that bad either. Once again Dinky is back in BCCH and we've been here now for a good handful of days. Let's just say that he decided to have a seizure that took a long, long time to get under control so our Ped had enough and sent us back to Children's hospital.

Since we have been here there has been some actual progress and successful doctors meetings. I've been quite impressed with how serious everyone has gotten over Dinky's poor feeding. He's been NG fed down for...I'm going to say 5 days? I can't remember exactly when things happened that way. At first he was on a continuous feed, meaning he was getting 10ml feed over an hour all day. Which got moved up to 38ml/hr for a full 24 hour period. He then moved to bolus feeds. Meaning he gets larger feeds over a shorter amount of time. He first started with 150ml over 3 hours with an hour break. Then he moved to 2 hours with 2 hours, then an hour with a 3 hour break between feeds. Now my little chunk-a-monk is up to 150ml/30 minutes.

Which is amazing that he's tolerating the feeds as well as he has been. For the first couple days he had to have blood work every day to check to make sure that his body was able to handle all of the food/nutrition that he was all of a sudden getting because he had had such poor feeding for the longest time. Proud to say that it's been a few days since he's had to have blood work! Our little superstar champ!

Since we have been here we've had a couple of studies done. Thursday he had a GI study with the barium drink to see what was going on internally. Meaning what is going on with this throat/stomach/intestine, checking to see if there were any abnormalities in that regard which could account for the poor feeding and hard time he has had feeding for the longest time. It turns out that he has what is called a vascular ring around his esophagus which is causing a slight narrowing. Whether  that is an actual cause for problems or not is still undecided as there are quite a handful of teams that need to come together on this and look over/watch the video study that was done.

Monday we had a formal feeding study done. That involved Dinky taking a few different textured feeds and seeing the mechanics of his swallowing, to determine if there was any danger of aspiration or reflux and to see if there were specific textures that he could easily swallow. That study showed that he does have some risky behaviours while swallowing, but at this time there is no cause to completely cut off his oral feeding. Yet as of right now we are still completely feeding via his NG tube until everyone has 100% decided if his feeds need to be totally tube only or not. We have talked about and discussed a G-Tube and yesterday I met with a general surgery resident to discuss this next step. It was actually reassuring because he came in and asked me how I felt about it, whether or not we as a family are together on this before he told me his professional opinion. And he, as a professional, feels that the G-Tube is the way to go at this point in time. Good news is that it isn't permanent. It's reversible and it doesn't need to stay in for the rest of his life.

This also provides us a way to maintain and make sure that Dinky is getting all of the proper nutrition and feeds into him that he needs because for the last while it was a huge struggle and challenge to get him to eat properly. So all around this is a win as well.

((Some time in the last few days we were moved into Isolation because our knucklehead decided to pick up a cold since we have been here. Means I get my own bathroom which is wonderful! Also really cuts of the whole...human interaction that one gets while in the baby room. But I have my own bathroom and WAY more room. And I am able to watch whatever I want via Netflix without having to worry about little people's ears. Dinky doesn't care (haha) with what we watch. Except Dinosaur Train. The kid loves that show! So we watch a lot of that as well.))

Monday we also met with a few people from the Ketogenic diet team. So we spent close to probably 90 minutes talking about the diet and what exactly it means to be on it. The type of epilepsy that Dinky has is very hard to medically control for the most part. Myoclonic epilepsy has been known to be more responsive to this diet which is a wonderful factor. Except the diet in itself is extremely strict. What it is is a high fat low protein/carb diet. Meaning that it's 90% fat, 5-7% protein and 3-5% carb. Talk about the fat content! This diet forces your body to stop burning carbs for energy and forces it to burn fat instead. Your brain has a survival switch in it so that it (could) potentially stop the seizures that he has. Being so young still and not relying on solid food makes it a bit easier to handle as all we need to do is formula, vitamin supplements and a couple medication adjustments. It also means that he cannot take any OTC medications. No Tylenol/Advil/Gripe water. Nothing that has any kind of sugar in it.

It also means that he will be needing rather frequent blood tests to check for lack of proper vitamins/minerals, cholesterol checks and what have you. I'm not overly impressed with that but if it can help him it's worth a shot.

Hopefully we know today or tomorrow if the G-Tube surgery happens on Friday or not.

Now that that's cleared up, let me make a few points:

-- Dinky is EPILEPTIC meaning we  have NO IDEA what is causing his seizures. I am so sick of everyone asking me if we know what is causing his seizures. He has EPILEPSY. THAT is what is causing his seizures.

-- Yes, we believe that his epilepsy is a secondary condition to whatever genetic condition it is that the has. Which brings me to another point. We DO NOT KNOW what his diagnosis is yet. And we WILL NOT KNOW for some time yet. All of the tests that he had done in January have come back empty handed. Bothersome, yes, but it is what it is.

-- Yes, that means more tests need to be done at a later point in time. No I don't know when they're going to happen.  

-- Yes, he MIGHT grow out of his epilepsy or he might not. And no we do not know if he will or will not.

-- Yes, answers would be really nice to have but we do not have them. Genetic problems and issues can take a LONG time to figure out. The medical field can only study so much and every day they are making new breakthroughs. Genetics and genome studies are still a relatively new fields and there is only so much that they can study/test right now.

So now that that's been said, I need to give some serious props to my husband and mum. They both step up so much every time we have to come down South that I'm so lucky and blessed to have them. Also to my amazing support team that we have at home. Our IDC is working so hard to make sure that all of our bases are covered, calling different programs and groups to try and help us get on the AHP (at home program), making sure that the person in charge of our application with the AHP is constantly up-to-date with our visits down here. I text her often, a few times a day with anything new that has happened.

My support system and network both professional and personal... I don't know what I would do without them. They're the reason that I'm able to keep strong and just keep swimming.

I miss my kids. I miss my family. I miss my kids... I cannot wait to see my minions. I sure hope that Husby is able to take the time off next week and come down here with them so that we can start our summer vacation a little earlier than planned. Yet at the same time it's so hard to make plans with everything else that is going on. Yikes!!

This is a novel already. I should probably stop and leave it where it is.

Also, on a friendlier note.

I got my Learners again. Meaning I can drive again. Meaning people can stop riding my tushie about driving. So there. Never-Neener. Look out world. I could be on the road one of these days. Just what we need. Haha!

A mind twisting thought train

Our IDC from the CDC called me late yesterday afternoon to discuss more at length about what has been going on in regards to Dinky. She mentioned that she had spoken to our OT about the upcoming G-Tube and our OT seems to be almost against it, stating that we should be going in for a proper feeding study and assessment before taking such a drastic measure and feels we should push back against our Ped's wishes because a Gtube could cause oral aversion. Meaning Dinky will learn not to take anything by mouth or have a huge fight against it.

And I understand her concern because as his parents, Husby and I have the same concerns as well. But let me break it down like this.

 Since April 29th, he has been on 10 day antibiotics. Twice. Meaning that in the last 5 weeks, he's had 20 days of medication to help clear his lungs out and try to hold them off from developing into something much worse than slight aspiration. Pneumonia is a very common problem for children that aspirate formula. Why? Because formula (or most of it anyway) is dairy based and all formula contains fat. Thus, if dairy or fat or both get into the lungs and is allowed to settle even for just a few days, pneumonia is more commonly the result from that.

Dinky has been on 20 days of antibiotics. For that reason.

A NG is a tube they stick into your stomach by way of the nose and down the back of the throat. They're irritating. It makes swallowing uncomfortable. It makes breathing uncomfortable. Even the simple taste of sucking on fingers is annoying thanks to the flexible tube jammed into your face. And let's face it. They're super easy to rip out. Remember when Dinky had RSV and he had an NG for a week? He pulled it out. 5 times. That's 5 times he had to go through the procedure of having someone hold his head and having another person quickly and deftly slide the tube up his nose and into his stomach. Not to mention a NG tube comes with a LONG tail that gets tangled up, stuck, caught up on things and is super easy to hate.

A Gtube is a tube they surgically place directly into the stomach so that you have a small button externally to hook the extension up and feed. Once done, you remove the giant trail of tubing and this allows for greater freedom to be carried, cuddled, roll around, bathe...play. But it's a small surgery. It's a scary thought that someone wants to go and place a small hole into our child so that he can eat.

OT doesn't seem to understand this.

So. Watch this.

April 24th, he was 6.91kg.
April 29th, he was 6.64kg.
April 30th, he was 6.65kg.
May 1st, he was 6.74kg.
May 4th, he was 6.77kg.
May 9th, he was 6.88kg.
May 14th, he was 7.04kg.
May 20th, he was 7.18kg.
May 25, he was 7.1kg.
May 27th, he was 7.02kg.

See that weight loss? That's 6 ounces in a week. Lost. Again. I don't even want to take him in to get weighed. I don't want to see what the scale has to say. I have now become a giant baby putting him on the scale. Hopefully Husby is home on Thursday when our Ped is in office so I can call him and let him know what his weight is doing. Can I just stomp my feet and throw a tantrum like some over-tired toddler that has so many emotions that they just explode because they don't know how to deal with such big feelings?

That's what I feel like.

I have a toddler. Trapped in my head. Screaming and crying and having a full blown melt down every time I think about this Gtube. Toddler me is sitting there wailing, all snot faced and sticky, tomato red with anger and frustration. And there's adult me, in my brain, sitting at a table going "Oh, hush you giant annoyance. It's just another thing to add to the list of already overloaded things to do. We'll deal and cope. Because that's what we do. We cope. We deal. We learn. We will survive this." Then there's toddler me, screaming even more because that's yet another thing that we will have to learn. And do. And clean. And have to watch.

It's like there's a party of responsible and irresponsible warring in my noggin. And as always the adult side wins. Even if I do want to throw things  around, stomp my feet, scream and cry. Problem is, if I start crying I'm pretty sure I won't know how to stop. So I cope. As I always have. I have this tendency to just accept things as they come, stand up under the weight of this and take charge.

Even if I want to poke it.
In the eye.

With a spoon and go neener-neener-neeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeener you're a silly wiener.

Mature, right? I'm talking about the adult part. Anyone going neener-neener isn't exactly in top adult form.

So let me assure you that in no way at all, are we actually going into this without fully thinking this through. We know exactly what's going on. We KNOW. We've weighed the pros and cons.

We aren't dumb. It's scary as hell. But we'll do this. Like we do everything else.

Kitchen Fails

Have you ever set out into the kitchen with all kinds of good intentions thinking to yourself, hey I can make 12 miniature pies in my muffin tin for a good little dessert it can't be that hard? Only to find out that it is a heck of a lot harder that it should be? Has that ever happened to you? No? Am I the only one out there that seems to screw up pastry with a scary sense of ease? It's pastry. Not rocket science! Turns out, I can screw pastry up. Even following the recipe perfectly. I have NO idea how I can screw something so simple up. It's mind boggling. I can make cakes and cookies like a pro but give me pastry and it seems to be hit and miss.

With more misses in my pastry belt.

So what was wrong with my pastry? It was crumbly. Even with the allotted amount of liquid added to it, the blasted stuff was still crumbling. Put it into the fridge thinking that would help. Idiot. Try blending in more liquid. MEGA idiot. Turns out if you cannot make it perfect the first time it turns into a weird slimy goopy mess. I'm sure a slug could have slid off of the mess I tried to call pastry.

I wasn't happy. I took the offending mess and threw it all into the garbage with a satisfying thud. Take that you piece of goop. I hope you have a GREAT time being eaten by birds you horrible crap.

Can you tell that kitchen failure really grinds my gears?

Plus side is, the same day I made terrible pastry a friend gave me this amazing pizza dough recipe that was SO easy and turned out just perfect! Now that is a recipe I was impressed and proud of. Because pizza dough and I have an even worse history then pastry dough!

So, moral of this blog post?

I hate pastry.

...

I'm just going to say this.

We have no idea who our neurologist is. Our ped got a hold of whom we thought was our neurologist only to be told that no, she in fact wasn't. Talk about a complicated situation that is really starting to make me lose hope in the place that is supposed to be an amazing hospital. I have yet to have a really good experience there. Now our Ped is on the war path for any kind of answer as to who the hell is taking our case and why the hell it's taking anyone so long to get their act together.

On top of all that, Dinky needs a G-Tube. He's not gaining weight and when he gets sick he loses weight so quickly it's kind of scary and unsettling. Not to mention that he is probably aspirating feeds quite often which explains why he's constantly on antibiotics... So Ped called this morning and told me that on top of finding out that we have no actual neurologist, he talked to one of the surgeons down at BCCH who said to write a referral letter and he will try and get Dinky in as soon as he can.

So I texted our IDP, who called me and chatted for a bit and she called our PHN to talk (who's out of office until Monday) and then she called our Ped to find out if there's anything she can do on her end. We really are blessed with such a great team that is working together to try and get Dinky the best care possible. I'm not sure where I would be if I didn't have them. Or really, my whole support  network that we have set up.

So. Dinky gets a G-Tube. Which means that we're going to be getting onto the At Home Program (AHP) which will help buffer the cost of everything. Ugh. I feel sick. So much going on all at once that it's just like my brain is ....

Mush.

Bits of this and that and everything in between.

I've become frighteningly lax in regards to this blasted blog. Sometimes I find myself wanting to close it so I don't have to do anything with it...and I somehow manage to talk myself out of it. I enjoy blogging, I really do. I just don't seem to really have the time to sit down and write out a post as often as I would like, which makes me sound lazy. And I really am. Writing a blog post isn't always the easiest of jobs, you know?

Tink is at the farm this weekend. Mum picked her up yesterday and shall drop her off tomorrow some time before she takes R2D2 to the rehearsal for his piano recital on Tuesday. I'm so excited to go watch him play. I love listening to him tinkering away on those ivory keys, but I do know that he's looking forward to summer break from not only school but piano as well.

It's nice just having him around (well, and Dinky obviously), we're able to actually spend some good time together. Last night we went out to a wedding reception for one of Husby's co-workers and it was a lot of fun. They had carnival games set up and cotton candy. R2D2 was in his prime, running around and winning tickets to bring up and collet prizes. I don't think he needs any new toys. Ever. In fact I'm pretty sure I could keep some of that stuff and gift it for Christmas! I just don't think I could get away with doing that to him. He's crafty and clever that one. I love him. He's such a treat. This morning he asked if he could play his tablet (yes, we broke down and let him get one) and I said sure...after he helps clean up. So now he's downstairs in his room playing for a bit after he helped clean up by picking up all the stuff off of the floors.

Dinky is feeling under the weather. Yesterday he wasn't feeling the greatest and this morning he's so tired, slight temperature, not hungry and was caked in boogies. And being sick tends to mean some time in the hospital and an increase in his seizure activity. Which I have noticed already this morning. I'm pretty sure that there needs to be a tweak in his medication as I've been noticing a few little twitches once or twice a day for the last couple of days and more than one or two today. Which means that something isn't working the way that it should be...and that he's getting sick. An increase in seizure activity is going to be the normal for us every time Dinky falls ill.

Just like how easy it is for him to get sick.

Which drives me mental because he doesn't have his vaccinations yet. Every time we try and get them done something happens. He gets sick or he seizes and winds up in the hospital. So not only is there Whooping Cough running rampant in our area because parents are (in my own opinion) freaking dolts (most of the time) and refuse to vaccinate, thus letting these diseases back into the herd...so not only is there that but there's freaking bacterial pneumonia as well. JUST what we need!


Husby fenced in our small little garden patch and we planted it about 2 weeks ago. Nothing overly complex. Potatoes, peas, beans, carrots, beets and spinach....as well as a small pot of chives. I'm pleased to announce that we have veggies growing! Almost everything is up to some varying degree or another, except the carrots. While we only have a few beans that have popped out of the soil, the peas have taken off. Which makes me wonder if I should have only planted 2 peas per hole rather than 3. Either way we like peas so that's a bonus. Also my little hanging tomato plant has green fruit already! I'm excited. I think I might enjoy gardening.

At least until the weeds get out of control. In the mornings I try to go out for a few minutes and pull what I can and revisit the patch in the evening. I do know that I shall be rethinking the strategy a little bit and trying to plan things a bit better next year, but this really is the first year I've had a real garden. At the old house we had a small patch but nothing to this degree (which in itself isn't all that large but a good size for being right in town!) so I've got all kinds of weird giddy going on. I hope to be able to make this as successful as possible, and if I can, learn about the right kind of veggies to plant that can be frozen (like what kind of peas I can shell and freeze!!)

I really do need a hobby.

OH! Before I forget, Dinky got his weight checked the other day and he is now 7.18kg!

Though being sick and not eating it better not go down...

This makes me all kinds of excited.

Okay. I should go find something productive to do. Because sitting on my butt isn't getting the floors cleaned. And they really, really need it because they're gross. I really should try getting them washed a little more often...

Mail, snails and puppy dog tails.

It's been about 2 weeks since I've last updated. Nothing of note has really happened which is a blessing. Dinky is slowly gaining the weight back that he lost. 10 ounces doesn't seem like a lot of weight to most "normal" people but for him it was a huge, huge problem. There was talk about needing an NG if he couldn't gain the weight back orally and if that was the case, a G-Tube would have been in the works as an NG is really only for temporary terms according to our Ped. That and Dinky hates them like there's no tomorrow and the last time he had one in he kept ripping them out.

So I'm glad to say that he's just under what he was previously.

April 24th, he was 6.91kg.
April 29th, he was 6.64kg.
April 30th, he was 6.65kg.
May 1st, he was 6.74kg.
May 4th, he was 6.77kg.
May 9th, he was 6.88.

So our Ped is happy and as long as the gain keeps steady a feeding tube isn't in our future!

Now, let me tell you about this really special piece of mail that Dinky received from an amazing young woman on the Island. Her name is Angel and she has a non-profit business called Hugginz by Angel. What she does is she makes blankets for children that are ill or "special needs". She spends time picking out individual fabrics for each blanket, sews them up and spends a few moments hugging the blanket and infusing it with her love.

A few months back I sent in a request for Dinky not knowing if he met her requirements or not and on the request form it asks you for specific interests/colours, so I filled it out with: dragons, pirates (his bedroom has these brilliant painted pictures from an equally brilliant mum friend of mine), and whales/ocean life.

One of my friends on Facebook tagged me in one of Angel's pictures asking me if this blanket was for my Dinky. And it was! It truly, for real, was for him. I was so shocked and in awe that she took the time to make a blanket for him. Not only did she make a blanket that is just perfect for him, but she took the time to fill it with her love and a piece of her heart. When we received the blanket, the first thing I did was wrap him in it and he cuddled down and went to sleep. Included in the box was a Curious George movie, a small travel pillow she had made and a zebra plushie.

Even just writing about it I can feel all kinds of emotions happening and I'm just so overwhelmed at the love people have for one another. So we use his Hugginz blanket every night. Actually, scratch that. We use it all the freaking time. I love it so much that it gets packed around all over the place when we leave the house.

Summer time is a measly few weeks away. Hard to believe that we're already almost into the middle of May. I need to start hounding my Neurologist in regards to when our appointment is in June as we've got our reservations on the Island booked. So many road trips in our future. Terrace some time next month and Vancouver at the end of June...and again in July for an eye appointment and Bio Chemical. So the first time down to Vancouver we're dropping R2D2 off on the Island with my gramma. The second trip down we will figure out a way to get him so that we can bring him home with us. So many road trips I'm starting to plan what we're bringing with us now.

Tink had her assessment done with the Speech Therapist and she said that Tink's perfectly fine. She has 103 words according to the little booklet thing I had to fill out. And that's just what I can actually understand. There are so many garbled could be words I've got no clue what she's trying to say.

But I DO know when she's sassing me. She places her hands on her hips and gets a total teenager look on her face and just rambles. And rambles. And rambles, often leading to her getting mad at me. They say what your toddler is like at 2/3 is what they're going to be like when they're 16.

I'm just going to point out right now, we're screwed..

I've managed to convince Husby I want a small lap dog. So come the end of July I shall start looking around to see what's out there locally/shelters. Our pup is 9 and it's high time we got another dog so that they can see what our family dog is like, thus turning into another one of Remi. I can only hope. Remi is just wonderful. I love that shedding, nasty, constantly needing to be brushed because he's blowing out his coat and it's disgusting as he looks like a poorly sheared lamb with patches of longer thicker fur and sleek summer coat...

The birds and the squirrel love it through! Fur doesn't last long in our yard! By the time he's done shedding he will need to grow in his winter coat, or at least that's what it seems like.

Dinky has cut 5 teeth and is working on his 6th. He had 2 when we went to the hospital on the 24th. I received some Punkin Butt teething oil. I LOVE the stuff!

"Yuck. UGH. Monny, lookit this. YUCK."

...that's my cue to end this now. Who knows what kind of trouble Tink is getting herself into...

Day from hell and back

Friday was and has been by far the worst day I have ever had to deal with and I hope that I will never have to deal with something like that again. Yet I know that this is just wishful thinking. I know that this is our life now and I know that days like that will happen again. I can just wish they never happened again as much as I want to, until I get blue in the face. I can wish and wish and wish and wish. I can wish for things to be different. I can hope that things are different. I am really just fooling myself with wishful thoughts. Hopeful, wishful, ignorant, naïve thoughts. Our life is now about seizures. About Dinky's differences.

Medications. Physical therapy, occupational therapy. Seizures. Genetic condition. Global delays. That's Dinky. Our tiny, little, happy and amazing little guy. For every giant step backwards we have small ones forwards.

What made Friday so awful? What made it literally the most hellish day in my existence?

Dinky was fussing for a while around 5am. I tried everything possible to get him back to sleep. He didn't want a bottle. He didn't want to nurse. He didn't want to be swaddled. He didn't want to cuddle. He didn't want anything but to just fuss and be really uncomfortable. And then the twitching started. First they were small, like normal. Twitches led to small clusters. Which led to larger twitches that lasted longer. Which in turn led to one twitch lasting 4-5 seconds. And that longer twitch bled into a full blown generalized tonic-clonic. Husby was sleeping, Dinky between us and after 3 minutes I told him to wake up, that I was going to get the Midaz. I couldn't get the stupid glass vial to open. Husby snapped it open for me and I pulled all of the Midaz into the syringe. I gave Dinky his dose and waited for the full 5 minutes to see if it stopped. It didn't. I called 911 like I was supposed to. He didn't stop.

They showed up and we loaded up into the back of the ambulance. He didn't stop. We left town and he still didn't stop. He had been seizing now for about 15 minutes. The paramedic called the hospital to alert that we were on the way. He didn't stop. Get out of town and she called again to ask if we could give another dose. We could. I dosed him again. He still didn't stop. He started desating. Gave him oxygen and suctioning. And yet he didn't stop.

It is agonizing in the most heart wrenching, gut pulling way.  Watching your child seize like that and not being able to do anything. We got to the hospital and ran him in. Didn't even bother pissing around with the stretcher. They just scooped him up and ran him in. Our Ped was hot on our heels. Husby called him when we left to tell him what was going on. Yet Dinky was still seizing. A temp check, more Midaz (this time rectally) and our Ped slapped in an IV into his scalp and jammed him full of more Midaz. Once that drug entered his system intravenously, he finally stopped. After an hour. He. Finally. Stopped.

Our Ped called down to Children's to see what they wanted him to do. He called 4 people and finally called someone higher up in the chain to see what the hell is going on and why no one wants to call him back. So we were told to increase his Topamax. Our Ped asked if they wanted us to send Dinky back down and they said no. The only thing that they would do would be to wake him up and send him home. So Dinky had a deadline of 12pm to wake up on his own. They tried to get blood to run lab work on him and they stuck him in so many places. Heels, ankles, feet, hands, wrists, elbows and they even tried his neck. Twice. Finally out of his fingers they were able to get the basic tests done but that was it.

12pm came around and Dinky woke up on his own and was fine for a few minutes and once again started twitching. More Midaz. Our Ped came back in after the 5th dose and said that maybe it was just the Midaz working out of his system, which was why he was twitching. He went back to continue on with his day. Dinky woke up out of the Midaz daze and sure enough his legs started jerking and twitching non-stop again. 6th dose of Midaz. Turns out the twitching was the start of another seizure and the Midaz stopped it and yet as soon as it wore off, it came back. So our Ped came back in and he called back down to Children's to fill them in on what was going on. They wanted us to come back down.

Transport was supposed to pick us up after 6pm. 8:30pm. Changed to 11pm. Which got changed to in the morning if he wasn't doing any better. We got moved out of the trauma room that we had been in all day and it seemed like things were going fairly well.

The next morning the twitching started again so the nurses gave him another dose of Midaz and his medication early. As well as Lactulose. Apparently it was news to our Ped that Dinky was constipated. Yet he's always suffered from constipation. So first of three doses of Lactulose for him. The first dose he tolerated fairly well. Until he decided to vomit up bright greeny-yellow goop which turned out to be bile. Gross.

Second dose he once again gagged and tried to vomit. Seemed silly to me that they wanted to give him three doses of the stuff even though the first one was working. Very, very well. Evening came rolling around and with that his medication. Got that into him and his final dose of Lactulose. Which he promptly threw up. I pressed the call button, needing new bedding and to alert them that Dinky had thrown up. All that happened was they turned the call off. Nice.

So almost an hour (I think) later someone came in and I told them what happened. She went and phoned our Ped after she remade our bed. And guess what? Dinky needed all of his medication again. Because the nurses didn't see how much he had actual expelled. ...well excuse me but if someone presses the damn call button, generally freaking means to get into the room and see what the need was. Seems simple enough to me.

The next morning we got the all clear to come home. Thank goodness. No trip to Children's for us. Get home and Husby went to get Tink. Who came home, settled into his lap and proceeded to throw up. Great. Just what I want to deal with. Puke everywhere. She nailed Husby like a champ. Poor guy. She also got me really well. Thank goodness for Gravol.

...which brings us to last night. Tink fell asleep just before 5. Woke her up just after 6 and she was back in bed at 7:30. Thought she would be up at some awful hour but she woke up just after 6. Sleep does the body good. Dinky however was throwing up quite often last night. I had to give him 3 doses of his medications because just after he had them, he threw them right back up.

Have I mentioned how much I hate puke?

I hate it. It's so gross.

It is really, really hard being strong all the time. The last few days I've been so ... off emotionally, which is understandable. No one needs to be strong all the time. In fact it can be really exhausting. I know that I'm allowed to have bad days. I'm allowed to be sad for Dinky. I'm allowed to be sad for what the future holds. I'm ALLOWED to feel upset. And you know what?

It's okay.

It's okay to feel the giant amounts of feelings that comes with situations that are way, way over your head and so far out of control you might as well be an astronaut trying to land on the moon. backwards. In a tin can full of marbles. And the moon is made of slippery Jell-O. And your tin can has no windows. Or controls for that matter. You just have a balloon and a paperclip to try to land that sucker you're stuck in.

Needless to say it has been all kinds of crazy for the last little while. I'm allowed to have bad days. The important thing is that I don't let it consume me so that all I am is sad. That is not our life. Our life has sad moments. Our life is not sad. Our life has sad moments. Those moments we cannot control, however, there are always new tomorrows.

And tomorrows give you a new day. How I handle life is up to me. I refuse to let some deep dark pit chew on me. So while I have bad days, I have many more good ones.

Kitty caves and the Wingbo

A handful of weeks ago we bought Tink a new carseat (the one that we had previously has become her spare seat for when Husby is working and we need to go somewhere) and like normal it came in a giant box, which for her was about a thousand times better than her new seat. The first few days it was sitting in the dining room she would run and hide in it. Now she runs, hides and meows sadly. So you have to call her "Here kitty, kitty kitty!!" To which she comes crawling out meowing like mad, lays her head on your lap (or sits beside you) and waits to have her head petted. Repeat the process about a hundred times a day (mostly at dinner of course) and that's the life of our Kitty Tink. She's become obsessed with cats and I mean obsessed. It's become quite the problem to the point where we are actually thinking about thinking about getting a kitten.

Last night I was surfing around our local kids buy and sell and managed to snag an amazing deal on clothes for her, so needless to say Tink is good for clothes until at LEAST next summer! The only think she will need new is socks and undies. Buying those secondhand is a little creepy. I'm just not comfortable with that.

Dinky needs more clothes soon. It's hard finding things for him as he's a summer baby and the sizes we need most people have winter clothes. Won't work for us but I'm hopeful someone will have a bunch of clothes second hand for us! If not? Fingers crossed we can find some brand new for cheap. I just don't like buying new most of the time for babies as they grow out of things so fast.

Except for Dinky. He's in a solid 6-9 months! Has been for about a month now and I'm looking for 9-12 months summer clothes for him and if possible fall/winter clothes in 12/12-18month. So, a huntin' I go.

R2D2 isn't getting new clothes until closer to the end of summer/start of the new school year. I don't know why but summer vacation seems to be the time of year when kids grow the most so there really isn't much point in getting him much of anything just yet. Darn children always seem to grow faster than they should.

Except Dinky. Length-wise he's really long. Weight... ugh. We met with our Pedi yesterday just to touch bases and see how Dinky is doing. He's lost some weight which I guess can be normal on these medications. Nott something I like hearing. Last week Dinky was 6.91kg this week he is 6.82kg. Not a huge loss but a loss nonetheless. Neither our Pedi or the health nurse are overly concerned just yet and I think they both feel that until there's a pattern of weight loss...we don't have much to worry about. I'm not happy with the sit and see so I'm trying to do everything that I can to get more calories into the little guy.

PT came over last week about brought a piece of equipment called the Wingbo. It's a tummy time frame. It has this contoured piece of plastic that you lay on that is suspended on a frame. Feet can touch the floor so that when you're on your tummy, you can rock back and forth. Dinky isn't a fan of it and every time he's in it I can assure you t hat his lungs get a workout and a half. BUT when he's mad he tenses up and is able to lift his head. Progress! When he's laying on my chest and we're doing reclined tummy time I've also been able to notice some pressure coming from his arms. A lovely, lovely thing to feel! PT has also suggested wearing him in the Tula a lot more often to help gain some head control. All the more reason to wear the Tula is great for me!

The start of this new medication has decreased the number of seizures and jerks Dinky has been having but they haven't stopped all together. From what I've been told and from what I understand, myoclonic epilepsy is hard to stop altogether. They aren't able to fully stop the seizures but are able to help decrease the number of them that he does have. The only drawback is that it's taking him a while to get used to it. Every dose increase he has makes him really tired. Tuesday's are dose changes and with his evening dose change this week he fell asleep at 9:30pm with only 20ml of formula in him and slept straight through. Last night really wasn't any better. I hope he gets used to it soon.

Summer is fast approaching and with that Dinky's first birthday. It's hard to think of a gift for him. We have enough toys from Tink, clothing will be needed but I would really, really love a patchwork quilt for him. Something with pirates and ocean life in bright colours. Greens, oranges....blues...might need to learn how to quilt. Or even sew properly.

I've become a Supernatural addict. Not sure how I feel about this because it's kind of scary how wrapped up I've gotten in the Winchester boys... I think I might possibly need a hobby.

Hospital stays and beyond.

I just finished reading my last blog post. Hard to remember what was said and what wasn't when it's been a fair bit of time since I've written anything. Currently the house is free from the sick bugs. Small, tiny creatures I hope don't visit again any time soon. It doesn't help that R2D2 is in school which seems to be a petri dish for breeding germs and all things associated with those terrible little beasts. Fingers crossed they don't come back. Is there some plant or trap I can hang up in my windows and doors to ward off the vile little germs?! If not, there should be. Catch the sicknesses in a small web like spiders. Someone needs to come up with something. I would buy it.

Dinky is now just over 15lbs! An exciting yet small milestone for us there! But more on him in a little bit.

Easter was a very fun time for the big kids! Started off with their little goodie hunt. R2D2 got a Creeper ... toy ... thing which made him very happy, Tink got a tea set (finally, we've only been talking about it for ages!) and Dinky got a few small things like a new Lulujo, a Lamaze toy and a new bib. And than, SURPRISE! New bikes for the big kids! R2D2 was due for a new one. The one he was using previously made his knees go up to his ears -- okay not quite but close! Tink got a Stride Bike that she's not quite sure what to do with it yet, but she's smart and will figure it out sooner or later. I'm baking on the sooner.

My parents came over for a turkey dinner and brought the kids a few gifts of their own. R2D2 has become extremely fascinated with graphic novels and one day during an outing to the thrift store we found the first book to a series so mum grabbed him the second one. I'm not going to complain! He loves them. Graphic novels and Where's Waldo type books. Whatever captures his interest reading wise is fine with me!

Tinks vocabulary expands almost daily. Both fun and frightening as I'm pretty sure she was trying to cuss the other day while in the basement with her dad who was cussing over a project that didn't go the way he had planned it. Than again, nothing ever really goes as planned. Ever. Because why should something follow plans when it decides to make its own?! Plans make things simple and easy. Can't have that now can we? Why would we ever want that?


Last Saturday (Match 28th) things were finalized with our Pedi for getting us back down to BCCH. He finally got a hold of our neurologist who agreed that the medication Dinky was on just wasn't working the way it should. So she wanted another EEG done to see what, if anything, had changed and in order for that to happen we needed to be admitted into our local hospital for transfer to be admitted into BCCH. Sunday we were transported down and went through a whole bunch of repeat questions about pregnancy, delivery...blah blah blah. Let me tell you, repeating everything gets extremely tedious.

At 28 weeks was diagnosed with Polyhydramnios. Ultrasounds weekly after 30 weeks as well as NST and weekly doctors appointments. As far as they could tell there was no cause for the extra fluid. Birth was induced after a bedside ultrasound on the 24th at 6am to determine how he was positioned as he had just been Frank breech the week before but head down during C-section referral. Broke water at 8am with the help of another doctor, Pitocin started at 8:30am and had him at 6:10pm. Born with fluid in his right lung and his left was sticky. Pediatrician came in and assessed, did a chest x-ray. Feeding problems due to him being sleepy. Low blood sugars for the first 2 or 3 days. Nursed and then gave formula to up his sugar levels. Feeding fine after the first 2 weeks. Have noticed almost right from birth his hypotonic state, assessed by neuro, started genetics blood work in November and referral for MRI. First seizure activity started December 31, a few every couple of days. First cluster January 10. January 11 another cluster for approximately 45 minutes, went to ER started Clobazam. Follow up with Ped on the 13th. Got a call on the 14th that Neuro wanted us admitted for possible infantile spasms. EER, MRI and lumbars the following week. Showed myoclonic epilepsy/seizure disorder. First generalized seizure February 1st for 8 minutes. Second was the 13th for 20...
It makes my head spin. I'm sure I repeated all that information about a dozen times to a dozen different people. His repeat EEG didn't really show much at all. Of course he didn't have any of his jerking seizure episodes during it. One or two very small local ones. One in his shoulder and one in his leg. That was it. Everything happened AFTER they disconnected him from the head things.

Saw the cranial surgeon as well. So far Dinky doesn't need to have surgery to fix his bean but if his head doesn't keep growing it will be revisited and reassessed. New medication added into the mix and one was taken away. As well as a weaning schedule for his Clobazam. I'm not going to get overly excited over this new medication until it's been in his system for a month. All of the other ones have gone and proven themselves ineffective after the first two weeks. But I have noticed a difference in him.

He's still having the occasional twitching/seizure but not nearly as many as he had been having. His eye contact has improved tremendously as he is more willing to hold your gaze for minutes at a time. He's also a little more active. Down side is I have noticed a small decrease in his appetite so I do need to watch that. Cannot have him not eating.

I am excited for the time at home. I'm excited to be back at home. I'm excited for what PT is going to start doing with him as I would LOVE to have him have more head control by his birthday. That's going to be my goal to work on with him. July is still many months away so I don't see why it won't happen! But, things happen the way they happen for a reason. July = more head control. July = first birthdays, more specialist appointments and who knows what else.

Hopefully a garden as well! Husby has been so busy with so many other projects around the house. Our pantry/laundry room is being revamped. Last night before work he put up the first coat of paint so the next coat will be done in a few days and hopefully shelves will be going up this week. As it stands, everything is in Dinky's room. Not that he's using it or anything.

Time to start looking into movement monitors that alert with abnormal movements. I shall be bringing it up with my IDP when I see her an PT on Wednesday. I would love for Dinky to be in his room by his birthday but I just don't feel comfortable with the thought just yet. A movement monitor would probably help me immensely in making that transition.

So. Fingers crossed!

Twiddle dums and ho hums.

It's a quite time in the house right now. My mum took R2D2 out to his school Pi/Math night where they get to play math games and can buy a piece of pie for a toonie. I know the money raised from this evening will go somewhere I just don't know where. Probably for the Math department. Would be the most logical choice due to it being Math and Pi night.

The house is slowly getting over the sick. Tink is feeling 100% better, hooray! Dinky however is still not exactly awesome. He's had a huge increase in his myoclonic seizures since this last Tuesday when he was put on antibiotics for his ears and throat. And by huge increase I'm talking like... yesterday in less then a 12 hours period he had 30 of his twitching fits. 18 in 12 minutes. I gave him his rescue medication as that seemed to be just a little tooooooo excessive for my liking. The day before he had 24 and yet again, his rescue was given

Today has been an improvement with only 11 so far. We had PT & OT here this morning. New PT as the one we had been working with has gone off on mat leave. Which is alright, pretty sure I'm going to like this new one. She seems to be pretty friendly. PT is back in 2 weeks and it's going to get serious in regards to equipment and what have you. Wedges for tummy time, a side positioner thingy so that he can side lay and has to stay there for a while. Dinky loves to hang out on his side but not for very long. He either just 3/4 lays on his belly or gets bored and rolls back onto his back.

So we will have things to work on with the proper tools to hopefully start seeing some progress. He lifts his head wonderfully when he is on my chest but there's no way that I can spend all day every day with him laying there for tummy time. I'm glad that we're finally starting to get the things we need to help get him on his way.

But it really isn't their fault either. They had to wait for another family to be done with it so that we could have access to it. The problem with our limited resources up here is that there tends to be items few in number. We just don't have the funding and a large influx of money for these kinds of things. Yet we make do with what we have. It's a lovely thing, being able to be so resourceful! Earlier today Dinky was on the floor with a pool noodle that had been cut in half under his chest like he PT had shown me and he was just fighting it. He kept trying to roll off and I kept putting him back on it.

So he was kicking up a huge fuss and getting pissed off that I wouldn't let him do what he wanted so Tink came over, sat down beside him, rubbed his back and started shushing. He calmed down for about 15 seconds before he started all over again. We have to be cruel to be kind. Though I have set a goal for his 1st birthday: I would like for him to have better head control so that he can maybe sit up supported and I don't have to worry about whether or not the poor kid is going to give himself whiplash with the way he just lets his head fall back.

Tomorrow is weight check. Fingers crossed he's 15 lbs! He's starting to tolerate solids a little more. Isn't so prone to gagging on them and occasionally will close his lips over the spoon. Progress! I will take it. Earlier today I positioned his hands on his bottle and Dinky held it for about 5/6 seconds. He's also become so in love with his Lulujo swaddlers. He loves them so much. Epically sweet to see him sleeping with his blanket hugged tightly.

R2D2 came home just now (well, I suppose about 20 minutes ago) and he was all excited because he won a prize tonight! He had mentioned earlier that he hopes he wins one but knows not everyone can be a winner.

Real life lessons.

As my mum says, there are more losers in life than winners. Not everyone can be a winner. Nor does that give them the right to have complete fits for not winning. Learning to lose with grace and dignity is a valuable skill I think everyone should learn. Now he's all tucked up into bed and perhaps I can convince Dinky to have a bottle and to take a sleep so I can tidy up the house and MAYBE get a bath.

Wouldn't that be lovely.

Adventures of Sicktown

Well. It seems like just my luck and the house gets smacked in the face with a sick bug. In fact the blasted thing knocked on the door, walked in and dropped a giant suitcase on the floor with a huge CRAAAAAAAAAAAASH. A doomed long stay. Why oh why!? How can I evict this bug that has taken over my house?

The sore ear started with R2D2. The bug leap frogged over to Tink with ears, throat, eyes and sinuses. Moved over to Dinky with ears and throat ... and now I have the whole package. And just got kicks and giggles the Bug decided to give me a nasty, nasty cough. Have you ever had that insane, irritating ringing in your ear that just wouldn't stop?

Yeah. I have that.

Plus it sounds like my left ear has a fish bowl stuck to it so imagine my enjoyment when I yawn. Or sneeze. Or cough. So. Much. Fun. As much fun as say, rolling around in honey and laying over an ants nest. But not as much fun as eating a tub of jalapeño ice cream with hot sauce topping and bullet ant crumble as another tasty treat.

Needless to say I'm a miserable wreck. Yet through all of this, Husby hasn't gotten sick. The stinkbug. 

Tuesday morning I noticed Dinky having his myoclonic twitches over the span of about an hour. Didn't give his rescue medication because we wanted to see if they would stop on their own. They did, but I still called the Peds office and we were told to just show up and we would get squeezed in. So that's just what happened. Waiting in the waiting area and our Ped walks out, sees us and goes: "You. I'm supposed to be seeing you tomorrow." ....welllllll, obviously not. Back we go and I lay Dinky on the table and start undressing him while giving a run down of what was going on. I old him that Tink was about midway through her course of antibiotics for ears, nose, throat, eyes... so he said Dinky would be getting antibiotics regardless. Checked his left ear and goes yep, checked his right ear oh for sure and grabbed a tongue depressor, pried open Dinky's mouth and we got a prescription for amoxicillin. Not only that but also had our Clobazam increased again to 10ml a day. 2.5ml at 6am (this seriously sucks!) and the rest at 8pm.

We really can't seem to catch a break. Always has to be one thing or another!

Tink had her intake assessment for speech therapy. I think it's totally not needed, but whatever. What do I know. She's happy with learning a few signs. She now signs for please, thank you, more and book. Clever girl!

I should probably get going. Dinky is awake, Tink is trying to break into a locked cupboard for cheerios and R2D2 flew through his chores so he could go to a friends house. I should set the time and give the house a 20 minute tidy. It's amazing what can get done in 20 minutes!

A long over-due update.

I've been thinking about the need to update this darn thing but never really get the time to get around to actually doing it. Life has really just been that busy and I don't really have that much time to sit down and do a funny, witty update before Tink wakes up from her nap. So this shall be pretty much point form.

As last stated, Dinky had his first generalized seizure February 1st. We thought that the increase in clonazepam would solve everything. And it did. For 12 days.

February 12th I had noticed a few twitches here and there in the morning just before his morning medications were due. Called Neuro and left a message for them to call me back. Nothing. After his meds kicked in, he was fine. Until a half hour before his afternoon dose was due. Same thing. More twitches. Called our pedi and he said that he wanted to see us but due to the fact that Husby wasn't home he agreed to meet us at the hospital the following morning. But to give him an extra dose of clonazepam. 6:30 rolled around and there Dinky was. Twitching again. But he was laughing after every twitch, smiling and just being the goofball that he is. Paged Neuro yet again and they finally got back to me. Gave his evening medications with an added increase of Keppra -- Neuro figured that's all it was.

He had also just developed a small cough and a generous amount of snot.

Then about 2:30 am (again with the early, early morning) I woke up to some odd movements. Turned on the bedside lamp and witnessed Dinky slip into another generalized seizure. So I immediately set the timer function on my phone and between watching helplessly I was running around and throwing everything we would need into a backpack. 5 minutes passed and he was still seizing so I called 911 as per instructions. The lady on the other end of the phone was amazing and kept reassuring me that help was on the way. Yet he wasn't stopping. Once I got off the phone with 911 I called my neighbor to tell them that the ambulance was on the way and I needed her to come and sit with the kids until I could either get a hold of my mum or my mother in law. 10 minutes passed since the time Dinky started seizing to when the ambulance showed up. They came into the house, into our room and saw that he was still seizing so we wrapped him up his blanket and just left. In the time of him starting to seize and us getting into the ambulance I had managed to pack my diaper bag, grab his medications, throw together a backpack with clothes and toss my planner into the bag.

Grabbed all bags and carseat and away we went. Once in the ambulance I was answering questions about his medical history, the medications he was on, our last visit to Children's hospital, trying to call my mum, got through to my mother in law and filled her in, texted Husby who was at work and finally called him and left him a message that we were on our way to the hospital because Dinky was seizing again. Enter in the oxygen mask because he was working way to hard to breathe and his SATs kept dropping. And suctioning. Oh the boogies we got out of him in the ambulance..

15-20 mintues passed (probably closer to 20) and he finally stopped seizing. Get to the hospital and they checked him over. He had a temperature of 38.3 so Tylenol it was for him. Kept him on the O2 for a while and he slept. Husby showed up and we just sat there, wondering... worrying. The nurse brought other another stretcher so that he could lay on it and try to get some sleep while I curled up with Dinky to try and catch a nap. Our ped came in first thing in the morning, just as Dinky started to twitch again. Time for morning meds.

Except the meds didn't stop them this time. So he was given an IV for fluids and Ativan. A small dose of that and wait. Still twitching. Another small dose. Still twitching. Yet another small dose and he finally stopped. Blood work TRIED to happen but he was dehydrated from not eating for hours. They did the best that they could but Dinky just wasn't giving up his blood.

His temp was up again so more Tylenol. His SATs were dropping so more O2. Enter in one puzzled and pissed off Pedi that he couldn't figure Dinky out and we were going back to BCCH some time that day. Checked my bags and it turns out I was missing some pretty important stuff. A bottle for Dinky, and all kinds of toiletries for myself. Husby ran out and got all of that for us and then about 1pm he went home and we were on our way to the airport.

Dinky needed O2 on the flight down.  We get to BCCH through Emerg and were checked into a room there to be assessed. Fever. More O2, a short nap for me and a few hours later we were moved up into an Isolation room up on the 3rd floor. And in all that time Dinky hadn't really done much nursing wise. Swabs and boogie collections happened and just trying to get him to settle down and sleep for a while.

Blood work. More blood work.. and then I learn that he tested positive for RSV. And THAT'S when things started getting crazy. He needed constant O2 because he wasn't breathing well, constant tracheal pulling and just not happy systems that way. And yet still not eating. My days passed in a constant series of saline nebulizers, nasal and oral suctioning, Tylenol and hitting that damned silencing button on the stupid SAT monitor. 4th day of being there NG tube was brought up and I said I needed to discuss it with my husband. So I did and we decided that feeding via NG would take some of the pressure off of his breathing and relieve him a bit.

So in the first NG went and for the first time in days he was able to get a feed in. 100mls every 3 hours. Medication was given in the NG as well. Swallowing was just toooooo much work for him. Chest x-ray showed his lungs were clear, VICTORY! It took a long time for him to get better. But we saw doctors every day. sometimes two or three times a day.

So now Dinky is on Clobazam. Which is what our pedi prescribed January 11th.

Medications were adjusted. 5ml of Clobazam, Keppra increased to 6mls, 6ml of the peridoxyne (B6), and 2mls of Clonazepam 3 times a day.

Ugh. My brain is so overloaded with all of this it's insane. It's literally working overtime to try and get everything straight. Clobazam was added the day after we were admitted. Metabolics came back that we could stop the B6 sometime in the first 10 days we were there. Clonazepam decrease happened I think the first week we were there?

I got to visit with friends I hadn't seen for a long, long while which was really nice. One kept bringing me food as well! Homecooked food? Yes please! Kept busy with Netflix on my Kobo -- yay for WiFi! Even got to visit with my gramma and great gramma!

And THEN I get a call from my mum that her house was burning down. Made sure that no one was hurt and then called Husby to go up there and help. And you know, grab the kids as they were at the farm...

So really, it's been a very very shitty weird whatthehelldidIeverdotodeservethis kind of start to the year.

So much for point form.

Anyway, we've been home for just over 2 weeks now. We were given a rescue medication just before we left to use if Dinky seizes for 5+ minutes or has a cluster of 3 twitches in 30 minutes.

...and what does he do? On the 8th the little bugger started twitching.Blah blah blah... gave rescue med just as we were getting ready to eat dinner. Husby called mother in law. I called Neuro. Neuro said to up his clobazam to 7.5mls and to give then.

So, 5pm noticed twitching. 5:15 gave rescue. 5:20 called Neuro. Neuro would call me back. 5:40 give the higher dose of Clobazam. 6pm we were in the truck and going to the hospital.

We were home by 10pm that night. The little booger. So higher dose of the rescue as we had to give it to him again... as well as the increase in the Clobazam. Needless to say he's been pretty zombie like. But he IS improving.

And wouldn't you know. Yesterday Tink went down for a nap with a small cough and stuffy nose. Woke up with a seriously goopey eye so Husby took her to the walk-in clinic and came home with a toddler that has the start of double ear infections, sinus infections, swollen tonsils AND PINK EYE. So SHE decided to almost get herself sent to the hospital as we couldn't get her freaking temperature down for ages. 39.7 was the highest I had ever seen it. It was just not very fun.

Okay. I cannot update any more. My brain is just mush. So much for a short, point form...

OH!

Dinky cut his first tooth and has decided that the underside of my nipple needs to be ground flesh. Nursing is SO MUCH FUN!

2 weeks.. well more like 12 days.

R2D2 is up at the farm. He and my mum went out on a date last night. His favourite spot to eat at is Subway. I don't know why. Maybe because when I worked there he came along with me during short shifts if I couldn't find someone to watch him. But I guess the store here is under new ownership and not stocked for a "decent" meal. I'm sure it didn't bother him much, so long as they had olives for his sandwich. The more the better for that kid. After a lackluster dinner, they went bowling and then to see Paddington. Lucky boy there! Kind of jealous. I haven't seen a movie since I went with my mum!

Tink is so obsessed with Blues Clues that is all she wants to watch. Her favourite thing in the world right now is that damned blue puppy. While we were at BCCH, a lovely dear friend sent over the best care package for us that included a Blues Clues bathtub toy that HER daughter had. That damned dog goes everywhere with her. She sleeps with it, carts it around, eats with it, feeds it. Needless to say, she's a very, very happy little girl. She's so full of spunk. And her imagination is becoming well known. Like earlier she was trying to make her Blue toy walk in a pair of her outgrown red shoes. She tried for ages to get the 100 sizes to large shoes to stay on the toys feet. Needless to say, it didn't work well.

Dinky is ... well enough. We had an appointment with our pediatrician on Wednesday. Needless to say, he's not happy. Dinky has lost hard earned weight. A handful of ounces. The stay at Children's did a number on him. He's not one to have a bottle outside of home. I don't know why but we noticed it at Christmas, he pretty much just wanted to nurse the whole time he was hungry. It would be find if he could thrive strictly on breast feeding but the little guy just can't. For whatever reason he's just not able to. He has 2 weeks to get his weight up. And if our Ped isn't happy with what's been gained our next option is a feeding tube. Not something anyone wants so we have him on a stronger mixed formula. 16oz of water to 12 scoops of powder, which roughly turns it into 24cal/30ml.

I changed his bottle as well. Thinking that maybe the Ventaire just wasn't doing it for him any more, even with extra added holes and a cut in it. Moved him over onto Nuk with a mommy-modified nipple. He's taking both the new bottle and stronger formula better. Fingers crossed that this is a step in the right direction! Today is another med adjustment day. They happen every 5 days. I'm kind of on edge and anxious about this as it wasn't long after his last adjustment when we lowered his Keppra that he had his big breakthrough seizure.

Now. For those of you that know me, I'm pretty sure you've heard me (and possibly have seen) my lovely, lovely diaper bags and accessories. I pulled everything out last night to take a picture of my stash and decided I needed to repack the bags that I use. The wonderful thing about Ju-Ju-Be is that there are so many options for bags IN bags. The organization is delightful. Opening up a well packed bag gives me some weird sense of (angels singing). Hilarious as my house is so far from organized it's not even funny. I guess I feel like so much is out of my hands and out of control that at least I can have one small tiny bit of tidy? Maybe?

Ah, who am I kidding, I'm sure it'll go to pot again in a little while. Speaking of tidy, I need to dig under the couch to see if Dinky's snot sucker ended up in the deep dark hole of the Nether World. Wish me luck! I'm about to set out on a grand adventure. I really do need to locate the thing. The poor tyke is snotted right up. Just what every mum wants to do. Suck boogies out of noses.

And be walking, big sized portable tissues. Drool rags... has every mother used every pieces of clothing at least once to clean up some leaking body fluid? I know I have. Well not every piece but pretty damn close! You need to use what's at hand. And if that means spit-up is being wiped up with a clean, just about to be put on sock, then so be it. At least...

That's how I do it!

Day 8 at home!

Being home is a whole different kind of chaos. I forgot how much I missed the chaos that comes with my family. I'm still a bit hrumph over the fact we missed R2S2s birthday so when we got off the plane I ran into the store to grab the basics needed and a cake for him so we could do our own little birthday dinner with him the next evening. That went well. Being able to sleep in your own bed with your own blankets and pillows is far beyond the best thing!!

A huge shout out to my mum for once again dropping everything and making sure the kids are well taken care of. My motherinlaw took Tink for two nights as well, and our little girl had a great time hanging out with Oma and Opa.

I had secretly hoped that the addition of Clonazepam would have stopped Dinky's seizures. And for 9 days it did. And then, it didn't. I never, ever, EVER want to go through a tonic-clonic seizure again. Formally known as Grand Mal. Scared the living hell out of us. And it went on long enough that I called 9-1-1 and we took the ambulance to the hospital. The good news is, Dinky is fine. We just have to bump up his Clonazepam increase up by a week. It's a sick feeling, watching someone go through that.

The helplessness of dealing with something that is so out of your control. I'm a strong person and that was so far out of my comfort zone. So I told Dinky. No more of that garbage. None. Zip.

He probably won't listen to me. He's 6 months old.

On the high plus side, he's starting to reach for toys above him! They're not very far above them but it's progress. He's also rolling 3/4 of the way onto his tummy and back again! Clever little duck!

I'm so proud of all my kids. I love my life, regardless of how many bumps and curves. Because it is what it is. Change what we can and accept the changes we can't.

Going to take Dinky to get his weight checked. So many different scales. I'm kind of nervous to see what it says. I know he's lost weight. Time to bring it back up.