An Unpredicted Complication

When we found out about Dominic's cleft lip and palate, heart defect, and eventually his 22q deletion, there were plenty if complications that we predicted. I knew that breastfeeding wouldn't be easy or even possible, I knew he would have to have surgery, and I had read about many other possibilities of things that the 22q would complicate, many things we may not know about for sure until he is in his teens. The 22q deletion itself is not a death sentence, but many of it's possible attributes can be, especially the heart defects. We were fortunate that Dominic's needed a relatively uncomplicated heart surgery when there are so many possible extremely complicated. ones.

But even all the possibilities with 22q they are still somewhat predictable. As soon as he was born we had at least some idea of what we were dealing with. We had a sort of insight into what his future looks like. But life in this community is extremely unpredictable.

Although it seems obvious in hindsight, I never thought about how we would end up being a part of a "sick kids" community. I never thought about how I would be likely to meet and become friends with other parents with kids in situations similar to Dominic's, but I have. I also hadn't thought about how this extra time spent in hospitals with him would mean I would be exposed to others heartbreaks. We know heart defects are serious business, and that not all kids survive them, but I never thought for an instant that I would ever be witness to such an event. I never thought for a second that I would witness the heartbreak of a mom and dad after they were told nothing more could be done for their son. I never had imagined that a mom I had befriended with a baby that has one of the most complex and scary heart defects out there would lose her little man. I thought we had all dodged that bullet, and all our little men would grow up and have little heart buddy birthday parties. Now it doesn't seem possible to consider having them without him.

In many ways this is one of the hardest parts. Witnessing other's heartbreaks and feeling completely powerless to help. I can offer condolences and let them know the things I can do for them, but there is no way I can take back what happened. I think that would be the only way anyone could really undo the pain, the only REAL way to make it better. Knowing it could have just as easily been my boy and my heartbreak, and feeling guilty that I am grateful that it wasn't. But also knowing that that could also change in a heartbeat... Or lack of one.

Ch-ch-ch-changes...

Really, there aren't that many changes, but I am sick of calling my random and far between posts "Updates" so... it's more interesting.

One thing I forgot to mention on the last post is that Dominic is now sleeping in crib in his own room. That was really a bigger change for me than it was for him, and he adjusted just fine to it. He's my little rocket man.

We've met with a few more doctors the past couple weeks and I was hoping I would be able to post that his lip surgery has been scheduled, but it hasn't.

Let me take a step back to explain why that is.

Dominic is still not taking all of his feeds orally yet. He likes to eat, and occasionally will polish off his entire feed without needing to put it through his tube, but too often he falls asleep or gets too frustrated. He's getting better, but he's not there yet. So because he still needs the tube, or A tube of some kind, we are opting to go for a slightly longer term method in order to get that tube off of his face, and out of his nose in order to make for a better recovery from his lip and palate surgeries. We call this his "G Button", and it will go directly into his tummy rather than in his nose, down his oesophagus and into his belly. It's a small surgery with about 3 days of recovery time in hospital.

We FINALLY got to meet with the plastic surgeon after she cancelled on us twice to talk about what to expect, and it was all pretty straight forward, not a lot of new info, but she did say the absolute earliest she could do Dominic's lip is the beginning of May, which is far later than I would like. He will be almost 9 months by then, and it was my understanding that he really should have had it done before his 6 month birthday. The delay for him is physically fine, but I really wanted to get this done sooner.

The thing that is the real bugger is that early may is the absolute earliest for her, but they are trying to coordinate doctors to do the G Button, the lip, AND put tubes in his ears at the same OR time. Trying to coordinate 3 doctors at once is like trying to herd cats, so I am not too hopeful. They just want to do them all at once so that they don't have to sedate him as much, but our options are wait until he's 47 to have them all done at once or do multiple surgeries. So we opted for the latter in hopes that we can get him in earlier for both. But it makes me wonder if she had actually shown up for the first appointment if it would have been done already. But whatever. Coulda, shoulda, wouldas don't get us anywhere.

Oy vey. So, I'll try to keep the blog updated on that front...

New news with me is that I am officially actively seeking a new job, preferably a teaching one. I am totally done with the jail. I've had enough negativity that comes with working in that place. I will miss SO many of my coworkers, but the black hole where all employee positivity goes is just too much of a suck. I applied to work in the Saskatoon Public and Prairie Spirit School Divisions at the end of January and I had my first interview for Sask Public yesterday. It went really well and I am hopeful I will at least get that second interview, and maybe potentially a job, even if it is just subbing. Of course I am MONTHS away from knowing anything for certain, but at least I was informed that I will be notified whether I get something or not, so that's a plus.

I really need to get out of the jail and I feel this is the best way to go about it. I really do love teaching and hope that I can use that pesky piece of University paper that I paid SO much money for ;)

Long Overdue Update

It's been so long since I posted about the kids that I really don't know where to start.

Dominic is doing really well to the point that I sometimes don't know what to say when people ask how he is doing. Since his last heart surgery, and getting off of his sternonomy precautions, he has been just a regular 6 month old baby.

January had been a really busy month for appointments, I think that although I felt swamped in December, a lot of the specialists pushed his appointments to January to avoid the holidays and it had really made January crazy. The good news about that is that a lot of the specialists he saw last month determined that they don't need to see him again for quite a while. His neurologist has stated that so far his stroke doesn't seem to be effecting the left side of his body too much, and since he hasn't had any seizures, she is unconcerned about him for the time being. I think she said she'll see him again in about a year unless he starts having seizures, which is possible, but she thinks is unlikely at this point, because she thinks he would have had some already if he was going to have them. He also won't need to see his hematologist for another 2 -3 years. His levels (for whatever makes his blood clot) came back on the slightly low side of normal, so she just changed his injection medication to just aspirin daily. I was a bit concerned about Dom's head shape and his top soft spot closing up early, so we saw a neurosurgeon about it, but he also was unconcerned and just told us to have him sleep on his side whenever possible. We were hoping to get an estimated date for his cleft lip surgery on January 21st at his Cleft Lip and Palate Team meeting, but for some reason the plastic surgeon didn't show up. None of the other doctors or nurses had been informed that she wouldn't be there, so we left that trip to the hospital a little disappointed. We have rescheduled with her for an individual appointment, but it got cancelled because she was ill and now we are seeing her in a couple of weeks. Dom's Pediatrician said that the Plastic Surgeon probably wouldn't want to do the surgery while he still had his feeding tube, so we are going to an appointment next week to discuss getting him a temporary G-button, but it sounds like that's the best idea for everyone involved anyway. But it is another little surgery on the way.

Developmentally, he is a little behind on a few things, like his head control, because after being denied tummy time and making everyone feel nervous about holding him upright for about 6 weeks total that really did put him about a month and a half behind. He is now holding his head up regularly on his own, but he's still a bit wobbly when he's tired and ends up resting his head on my shoulder most of the time that I carry him around. He giggles and grins when people play games with him (my favourite is Rapid Fire Kisses and I can always get a belly laugh out of him eventually, and he's a fan of the song The Grand Old Duke of York, so I play that with him often too), he babbles when he thinks we aren't paying enough attention to him, but generally I just think he is a quiet baby. He loves grabbing onto his toes and rolling from side to side while he's on his back, but his favourite activity is just getting cuddled. I think being uncuddled for a couple of weeks in hospital after his first heart surgery has really turned him into a little cuddle bug!

~*~

I have been noticing a steady improvement in my relationship with Brayden these last few months. *Knock On Wood* I'm not sure if it's because of Dominic being born, or just that I am home more, or maybe we were just butting heads for so long that we started to understand what makes each other tick and where the line is and we have learned how to avoid going there anymore. Whatever the reason, I'll take it. Although we are still struggling with making Brayden responsible for his own work at school, and we still argue about this constantly, there doesn't seem to be any hostility outside the issue at hand, which is a great improvement. My favourite improvement to date is that he is regularly calling me Mom. We have never, ever pushed him in any way to call me this. The only time it has ever come up is when Rosalie started talking and we told him that if he is ever talking to her about me, he needs to call me Mom as to not cause confusion with her. He accepted that as reasonable and would drift between Mom and Anne accordingly, but now the only time in recent memory that I can remember him calling me Anne was a passive aggressive goodbye on the way to school when we disagreed about what is considered "Breakfast" . It's a pretty great thing. I feel like we have come a long way and he has matured a lot this year. I think perhaps Highschool being on the horizon has done it for him

~*~

Rosalie is pretty much just Rosalie. She's my little spitfire love bug. She's bossy as hell, but I wouldn't change her. Her favourite things to tell us is to "Leave alone me!" and "Stop talking" when she doesn't get her way. It's actually pretty funny, and it's hard not to laugh sometimes. She has also started saying things are "cool" and tonight when Roland asked her how old her milk was, she said "This? This is AWESOME" making Roland and I burst into giggles. She's drifting back into a mommy's girl from being daddy's princess, but I have a feeling that will be a constant rotation depending on her mood, and age. I'm predicting when she's a teen she'll be all about Dad because Roland still has a tough time saying "no" to her and sticking to it and she will milk that for all that it's worth.

I have amazing kids. What can I say? :) :) :) <3

Employment Insurance Debacle

 I apologize in advance for this ranty post, but I am really so fed up and frustrated that I really feel like I've gotta get it out of my system.

Let me set the mood first...

Dominic was born on August 8th, 2014 with a congenital heart defect due to his Chromosome 22 deletion. Anyone who has read this blog of late probably already knows that.

I applied for Maternity leave right after he was born, before we went to Edmonton for his first surgery. We were told that he would make us eligible for the Parent's of Critically Ill Children benefit because of his heart and the required surgeries. We were given the paperwork to fill out by the social worker and Roland dropped it off before he followed Dominic and me out to Edmonton. We received our first payments on September 10th. At the end of October Roland asked me when I was supposed to be getting paid by EI again because our bank account seemed a bit lower than it aught to have been. I looked into it and thought I should have been paid the week prior, but figured it was just a delay because of a random holiday or something. Between coming back after Dominic's failed Cath procedure and going back for his second surgery I called EI to see what the deal was. Apparently the initial forms filled out by the doctors only expected Dominic to be critically ill until a month after his surgery, September 13th, but with all of his complications his recovery went on longer. We weren't even back from Edmonton on the 13th of September. I was told I just had to get a doctor to fill out another form for the time afterward until after he aught to be recovered from his 2nd surgery in order to get it extended. We got all of that filled out in Edmonton after his surgery and sent it off as soon as we got back to Saskatoon (we would have gone to the Office there, but Dominic's recovery was so speedy we didn't have time!). In December we got a letter stating that we had been denied because there was an additional form we hadn't filled out. I figured, that considering we had already gotten about 5 weeks of PoCIC benefits this must have been an oversight. I tried calling Service Canada, but always got a recorded "Due to high call volume, your call cannot be transferred" message. I called about 100 times before xmas before I gave up and just took the form that we hadn't filled out to the Service Canada office and got it filed anyway on New Years Eve. On the 14th of January I started calling again having not heard anything and still not getting paid. I didn't get to have my call transferred to the hold list (45 minute wait!) until January 26th, when I was told that the paperwork had not arrived from Saskatoon yet. I faxed it that night, and then got a letter in the mail dated January 27th that we had been approved for 25 weeks of PoCIC.

Great! I thought. Now we just have to wait for them to pay us the 8 grand that they now owe us.

NOPE! Still waiting.

Called today at (8:30am this time!), got in the queue the first try, but over an hour wait on hold at first, talked to a guy and told him my situation, got put on hold for another 20 minutes and then got told that my claim is being "dealt with" and "changing it from Maternity to Parents of Critically Ill Children isn't an easy process", but our case is urgent so someone is going to call me back tomorrow... supposedly...

One would think that they would do all they could to make this easier when a child with health issues is involved, but this has been an absolute nightmare. I'm hoping all of this will be worth it when I get my extra 25 weeks off before having to head back to work, but now I am worried someone is going to tell me that I don't get that additional time and none of this has been worth anything. I should have just stayed with regular mat leave and not gotten greedy with my attempts to stay at home with my son (and daughter, but officially, it's just for Dominic)

Ever since I started having problems with EI my Dad has told me to email or call our MLA, but she's a Conservative and I doubt she will want to do anything for me. I'd be more likely to be berated for not returning to work the minute after I popped him out.

I feel like the way this system is running with us isn't how it should be handled. I don't think that a parent that has a million other worries because their child is critically ill should have to fight to get through on the phone and have to fight to get payment that they are entitled to. This is bullshit and I am totally sick of fighting. I hope to god that this is dealt with by tomorrow, because I have seriously had enough.

(P.S. I PROMISE, I do have a Dominic update about 90% complete, but I haven't had time to finish it. I swear it's coming! I promise by the end of the weekend it will be up!)