I was talking with Patti the other day about the ‘costs’ of dealing with a child with cancer. The medical protocol is a well tuned machine at this point, but the schedule for visits, drug administration, tests, etc. has the hours of a full time job. We can see how a family could loose everything, or have to sell a house, or something to get through this, because you can’t go back to “normal”.
In our situation, there are some things that we are finding hard to balance. 1) we have a daughter who is fighting cancer (and winning). 2) we have a new-born son who requires a lot of holding and feeding and usual new-born stuff. 3) we have a 2 year old that is very busy and wants to touch and climb and jump and run and search for gum, not to mention spitting, throwing food, peeing his pants, dumping makeup on the floor, and he also has an egg and dairy allergy that keeps us on our toes. 4) we have work to fit in there somewhere. 5) oh yea, there are two other kids, one that has AD/HD, and one that has well developed adult emotions.
Patti is a very organized and capable person… she could do any combination of 1+2, 1+3, or 2+3, but 1+2+3 is too much. I could do the work thing, or carry the load of the one that patti cant carry, but both is really hard. We are trying to find balance and we have very understanding work situations and supportive family and it is still almost more than we can carry.
Today serves to show what I mean. I have a daughter that needs new glasses and needs a visit to the optometrist that we really trust in abbotsford, but he only works a few days a month here and we booked a visit… but had to move the visit because of a conflict with an appointment for Angelica. I’m not usually the one that would organize this stuff, but we are all giving-and-taking. the appointment got moved to Thursday and i made sure to take the last appointment slot at 6:00 so I could make it and I JUST made it after driving ALL day.
The receptionist looks at me blankly and says “I don’t have your kids booked today”. ???
It seems that NEXT Thursday they are booked and that detail was overlooked in the conversation between Angelica’s doctors and me taking the call from the optometrist’s office and trying to remember all the details for everything until I could write it down…
I sigh and realize that I will have to do this trip again next week and that… I have one too many things to juggle.
When Geli was diagnosed with Leukemia, the Doctors and Nurses had mentioned that Angelica might lose her hair as a side effect of the chemotherapy. She seemed to be okay with that, but then…it hadn’t happened yet and so we figured that we’d just deal with it, if and when it happened.
Well, Geli managed to make it all the way through the first month before her hair started to thin and then….it started to thin quite rapidly.
The biggest issue was the hair falling out and sticking to her body. You know that feeling when you’ve got a stray hair stuck to your back and you can’t quite get it off….now imagine 50 hairs all over your arms and back and neck and inside your shirt….not fun eh?
And so, yesterday I asked Angelica if she’d like to shave my head so that she could see what it would look like, if she were to shave her head…and she said yes!
So, we grabbed the buzzers, took a picture to show the “before”……
….then we cut the pony tail off….
……and then started shaving….
We had lots of help…..
Lots and LOTS of help….probably more than we really needed,but hey! Gotta pay attention to the details, right?
And then we moved on to Angelica….
And Siah decided that he wanted to get in on the action…
But trying to shaving a moving target……
Well, lets jut say that his head shave is a little less than perfect…
We finally remembered to take a good shot of Momma and Geli…
Xani came home after dinner and decided she wanted in on the action…
So, here was the before shot…
And here we are after it’s all done…
And later on, Papa came over to join in…
Here we are listening to him ask for just a little off the edges…
We figured while we were at it, we might as well see what Papa would look like with a little male pattern baldness…
We needed to rock star it out a little…..
Here is the official Head Shot…
But…..the best part of the whole day AND night was when Pap put on this wig….
And watching him do the head shake and hand flick made it apparently obvious that he’s had long hair in the past….
He looked like he’d just stepped out of the Coast Capital Banking Commercial….it was AWESOME!
We had a good day with lots of laughter and although it could have been a tough day….I think it turned out okay.
We will be adding pictures of Nana Karen, and Aunty Chelle as soon as download them off the camera….they came over this morning to add their beauty to the mix……
Everyone looks so beautiful……its amazing how much stock you put in things like hair, but to see that hair only adds to your beauty…it doesn’t make or define you as beautiful…..Beauty is who you are!
Well, I got nothing in regards to a pregnancy or baby update. Nothing’s happening and while the ladies at our church threw us a Baby Shower last night….I’ve not gotten to those photo’s yet and so I’ll delay on sharing about that just yet.
We did go for a walk on Sunday afternoon. Geli stayed home and the boys and Xandra and Jon and I walked around Walnut Grove. It’s such a great little community.
I got some great shots of Jeremy….
He was in a great mood and posed for a bazillion shots……
A lot of times, he takes BRUTAL photos and so I’m always THRILLED to get some decent ones of him….
But today…..today we had some winners and I’m so pleased.
Which is your favorite?
My boys paused for a quick hug and I was able to snap up this shot…..
Siah was just mellow and chillin’ this particular afternoon……
Today was a down day and yet it was a great day, in it’s own way.
I got up this morning and get myself put together. In other words, I got dressed, did my hair and make up and had something to eat.
I find that when I do this (even if it feels stupid because I’m home by myself) “getting ready” helps me mentally set myself up for a better day. This is not to say that I don’t have days when I don’t “get ready” but more often than not I do “get ready” for the day.
I debated on driving Jon into work, but decided against it.
I’ve actually had quite a bit of Braxton Hicks over the past few days and while I hope they are getting my body ready to “do its thing” I’m actually quite tired. It’s a massive head trip, noticing that you’re having contractions, and not knowing if it’s the beginning of something or just a big tease.
In this case, serious tease and I’m tired of it.
So, I thought that I’d take a day to relax and spend some time on the couch; attempt to just chill out and get some rest.
Because I had no plans and because I’ve been working like a crazy woman to get my house tidy……I took some time this morning to just snuggle on the couch with Siah. It was nice to just enjoy some time with him as my baby, knowing that I don’t have this time for very much longer.
Then, he tired of the snuggles and we were off. He watched a movie on the computer in the kitchen while I made some playdoh.
He’s been given some little tubs of Playdoh when we’ve gone to Ricky’s Restaurant but hasn’t had a chance to sit down and play with a decent sized clump of it and to just muck around. It ate up a bunch of time and he seemed to really enjoy himself. One thing that I noticed is that he wants or needs to be “shown” what to do. I’m hoping that with time and given the opportunity that he’ll start to want to “play” and “create” on his own.
We had lunch after that and then we sat back down on the couch. I figured that I could sit and cut some paper people and that it might entertain him.
It was interesting for about the first 2 minutes and then…..well, then he ripped a head off one of the people and stressed out about it until I tapped it back on……
So, it took up some time, but not nearly as much as I’d have liked.
I’ve been trying to find some of the paint with water books that we used as kids and that I used with my older kids, but I haven’t seen any recently. I’m still looking though.
We did a bunch of painting….It’s funny how so many little kids paint in brown….all the colors mixed together. I hadn’t remembered that from when my other kids were little, but it’s funny how much of that comes back and so quickly.
We painted until Siah had had enough and then moved on to making some cards. I got Siah to cut the straight lines with my paper cutter and to glue everything onto the cards.
It’s been a busy day and yet a fairly quiet one.
I’m starting to shift gears. I remember when my days were filled with one craft or activity after another. It will be interesting to see how things “normalize” after the new baby comes.
I find that “this” being an at home mom is a little bit like riding a bike. I used to do this all the time and then life changed and I had to define a new normal. Now I have the chance or opportunity to do this again, but with more confidence and knowledge about where I’m headed and how long I’ll be there for. It’s makes it a little bit easier. I’ll have to keep this post handy to remind me of this when I’m back in the thick of it all and stressing.
But for now, things are okay. I’m okay. We’re slowly finding our groove….
This whole ’bout with Measles is completely over and done with except for a few little bits and pieces……
….of dried, dead skin shedding on Siah’s litte tiny fingers.
He’s spent a considerable time in this position over the past 2 weeks, picking at little pieces as he notices or sees or is bothered by them.
The very first symptom that we noticed on Siah was a rash on his hands….it seems that his hands were hit the absolute hardest out of all of this.
I did read that there could be some skin that shedded as a result of the rash associated with measles, and saw some pics on-line of these little kids with the skin on their torso’s peeling off and so I wasn’t completely shocked when his hands started peeling. The only other thing was that the skin on his torso felt like sand paper and so I do know that the rash basically burnt the layer of skin off. Not that it actually burnt it, but the rash destroyed the top layer of skin enough so that it needed to peel or rub off. We have been slathering cream on him, not in an attempt to “save the skin” but to ease any discomfort their might be as a result of dry skin.
His little hands have looked so cute and the look on his face has been so focused that I wanted to try and catch a picture of him……I got the hands, but try as I might (and I tried more than a few times) I could not capture the face….he just kept moving too quickly once I got my camera out.
I’m sitting on the main level of my house killing time listening to my baby scream his head off because he,
“WAAAAAAAAAAAANNNNNNNTTTTTSSSSSS MMMMMMOOOOOOOOOMMMMMMMAAAAAAA!” and seeing as he is mostly over the whole measles thingy and I’m so tired of his incessant night waking, we have started to institute the
Back to Bed, Baby! Initiative.
This involves getting up every time he wakes up and putting him back in his own bed. He is in a bed, and so he can easily get out and the biggest issue that we have is not even him coming to our bed in the middle of the night.
The biggest issue is the fact that since the while measles thing, he’s been waking up around 11 or 12 and screaming for no reason that we can figure out. He is quite verbal (as in everyone who hears him speak can’t believe he’s only 2 years old) and his language skills are quite advanced and so if he so desired, he could tell us if there was an issue…..I think that he’s OVERTIRED and can’t even really handle himself. You should see the dark circles he’s currently sporting under his eyes. Poor Baby.
The 11-midnight scream fest comes in a close second in the frustration factor. The number one issue is that he’s decided that regardless of whether we let him sleep with us or if we put him back in to his own bed, around 2am, he wakes up and then is basically restless and awake from 2am until after 5am. This time usually involves TONS of thrashing around. Crying because the covers are on. Crying because the covers are off. Kicking mommy and daddy in the head/stomach/back/whatever happens to be closest to the thrashing feet. Crying because we won’t let him watch a movie. Crying because he wants to go to the bathroom. Crying because he doesn’t want to go to the bathroom. Basically, there is lots of crying and very little sleep.
And so, it is time to learn how to sleep again.
This likely means that we will get even less sleep over the next 3-4 nights as we sleep train him to stay asleep or at the very least, to once again stay on his bed. YUCK! but it will be so worth it by next weekend when we are all sleeping soundly. I hope I’ve not jinxed it by saying that.
It was my baby girl’s 13th Birthday today. Angelica became a teenager today. I’m still a a bit amazed that I have a teenager and yet….it’s really not that different feeling from yesterday as she was quick to tell me. Time sure flies doesn’t it.
Jon and Jeremy went to church today and Xani and Siah and I stayed home. Siah’s still officially within the contagious time period and Xani was coughing like a mad woman. We made coffee cake and an egg/hashbrown hash-type breakfast. We cleaned the kitchen and then sewed like crazy.
I’ll be showing you over the next little bit some of the fun things that I made. Xani made 2 pillows and she did a pretty good job, if I do say so myself.
We’ve filled and hidden the kid’s Easter Baskets and tomorrow morning we’ll have a treasure hunt for the kids. They are looking forward to it and if it weren’t for Geli’s birthday being today we probably would have done them today, but I wanted to make her birthday special. We had her favorite meal of roast chicken, and potatoes, with carrots and asparagus and gravy AND…..Yorkshire Pudding. And she was a very happy girl. We’ve still not given her a gift or even had a cake so I’m not sure how special of a day it was, but ….well…….ya know……it’s the thought that counts, isn’t it?
I’m still trying to come up with a fun activity for us to do as a family tomorrow……ya know, one that involves being trapped inside the house with a contagious child….ya! should be fun! It’s been a long LOOOOOOOOOONG week and I still have a few days left to go.
The baby has been making the funniest movements. I’ve been bent over the sewing machine and apparently, he didn’t like being squished because he kept trying to streeeeeeeeeeeeetch out and kept kicking out the sides of my body towards my back. It felt so weird, and yet……….TOTALLY AMAZING. Baby movements are the best thing ever.
Some people from our complex just had a stillborn at 24 weeks. One week shy of when Nathaniel was born. My heart os breaking for them and all they are going through right now. I only hope that I can, in some small way, reach out and be a support or comfort to them. I’m feeling stressed that I’m pregnant, though and am feeling cautious as to how that might make them feel. So many sad conflicting emotions. In some ways, it’s like reliving the whole loss over again. So SO sad!
Well, after half an hour, it’s quiet and so I’m gonna sign off and head up stairs to bed. I hope you all had a great Easter Sunday with great food and hopefully lots of chocolate…….
My baby (won’t be able to say that for much longer) has the measles.
Earlier this week, we noticed that he had a bit of a rash on his hands and by that evening it was on his stomach and back. By the next morning, he was pretty much covered in this red, slightly raised not really itchy, rash.
That was his only symptom.
There was no preceding cough, cold or conjunctivitis (pink eye). He hadn’t had the 3-4 days of wicked high fever. Aside from the rash, there was absolutely nothing else to indicate any specific disease, virus or allergic reaction. He wasn’t even really acting any different than normal. He was eating, and sleeping (about as poorly as he normally does) and drinking. He might have been a bit fussier, but seriously – he’s two and the “fuss factor” can erupt for any reason at any time.
I googled, and googled and googled some more. I haven’t got my Google Medical Degree from just sitting around on my butt doing nothing, y’all. (Ha Ha!!) The results that I came up with loosely pointed to some random viral rash, Measles, German Measles or possibly some weird form of Hand-Foot-and-Mouth Disease (which based on previous experience with HFM disease – I had pretty much ruled that one out.)
I honestly figured it was some viral rash (of which measles actually is – a virus, not a bacteria – that is) and that it’d disappear in a day or two. I’d taken some of my other kids in to the Dr when they were younger for rashes and got the whole….you don’t need to stress out over every rash and cough. It’s just viral….Chill out and it’ll run it’s course in a couple of days.
I mean it wasn’t said exactly like that, but that was the general gist of the message.
And considering that Siah wasn’t SICK! I just waited.
By the 3rd day (we were at home all this time) he had a bit of a fever, and seemed achy and one eye looked a bit red (but no gunk – thank goodness) and he had managed to cough a grand total of twice.
The thing that kicked it over the edge for me, were news reports of a measles outbreak in the Metro Vancouver area.
So we called our family Dr and had a nice phone chat. His professional opinion is that Siah has measles. Even though the symptoms are out of the “normal order” he still has enough of the symptoms and combined with the recent outbreak – SHAZAM! He gets the measles diagnoses!
Obviously, this means one of two things. Either Siah’s not been vaccinated for the MMR or he’s only had one of his vaccinations and is one of the unlucky ones that still needed the booster to provide complete immunity.
In this case, it’s the first one.
I’m not usually one to talk too much about controversial things as I don’t like to argue and fight about personal decisions. I will gladly talk with anyone who asks about our personal family choices and the reasons as to why we make those personal family choices. I NEVER make decisions without absolutely plowing through massive amounts of information (from a variety of sources, not necessarily Google – Google is just a diagnostic tool! (that was supposed to be funny)), and using BOTH the positive and negative information to round out my decision. I don’t typically go just searching to prove my viewpoint…..that’s useless as far as I’m concerned. I also try really hard to not judge others for their personal choices. I feel that I am not living in their shoes and can not possibly know all the details, emotions and nuances leading up to their decisions and that really when it comes down to it…..I get to make choices that I believe are best for my children and my family. Others also have that same freedom. I’d like to be given respect for the choices I make even if they are not agreed with or understood and so, in turn, I also need to give that same respect to others regardless of whether they make the same choices that I make or ones that are completely different. I actually don’t EXPECT that others will make the same choices that I do. I hope that others make the best choices for them.
I understand that there are risks associated with not being vaccinated and if you were to ask me, I’d talk about our experiences with vaccinating Jeremy and what happened with him. My girls are vaccinated and aside from 2 vaccinations that I declined at the grade 6 offering they are current and up to date with their vaccinations.
If you were to ask me about vaccinations and whether I am for or against them. Considering that Siah currently has measles and at 2.5 years old hasn’t received his MMR yet, you might think that I’m against vaccinations. You might be surprised to learn that I do agree with vaccinations and that I see the benefits in having and “using” them. I also think that I need to take our personal history and experience into the mix and make the BEST choice for our family. If I were to give myself a vaccination type label – I’d say that we delay and select vaccines, we don’t completely avoid them.
pics of Siah from this morning
Obviously, we got the measles from somewhere. Do I have any idea where? Nope! Absolutely no clue! Do I even really care? No! I’m not even interested in finding out. It makes no difference to me where it came from or who passed it on. I am not mad at whoever passed it on or even really annoyed. The fact of the matter is that Siah has measles. He is currently cooped up at home until next week sometime and we are just chilling and taking it easy. It’s done! He has them and no amount of stressing on my part will change anything. Once we pass this week, it will be over and done with and he will be as immune as the other kids.
What about the time period before we knew that Siah had measles, when we might have possibly passed it around to others? Well, I’m not happy about that (who wants to contribute to others getting sick), but again – it’s a non-factor for those who choose to vaccinate AND it’s one of the things that is a possibility for those who chose to either not vaccinate or to delay vaccinations. I knew that was a risk and I had to be willing to deal with that risk when I made my choices. It is just one of the MANY things that needs to be thought through when you are making your decision. Obviously, we ended up dealing with one of the risk factors of our choices and while I’m not thrilled about Siah getting measles; It is what it is and we, in a sense, “chose” that this might be a possibility….which obviously has then turned into a certainty.
If you’re interested in sharing, I do love hearing how and why others chose to come to their personal family decisions regardless of whether they differ from ours or are similar. I love learning more about people and the experiences that lead to their decisions. I’m not going to change my decision and I’m not looking to change anyone else’s decision. This is just another record of what’s going on in and with our family. That’s what this blog is….a record of our lives and a place for me to share what we are going through.
Tonight I removed 2 eye liners, 1 lipstick, a pen, and 14 barbie shoes from the girls’ toilet. It took about 12 seconds to put them there, and about 35 minutes to remove. The first toilet that only had 1 well placed pen took about and hour and a half, but now I am experienced at removing toilets, dumping the excess water out, flushing them out upside-down, resealing and replacing them, and then disinfecting the lavatory. Only 2 more toilets to fix…
Hopefully the 2 yr old will find a new hobby soon.
As Patti is consumed with prego related stuff, I thought I would jump on here and record some of the fun little things that have been going on here that I will want to come back and read one day later. You know the saying “One day you’ll look back and laugh”… That saying means that you are not laughing now and yet you need the presence of mind to record the events, ’cause you know that one day you might just snicker a little.
File these under 2 yr old experiments…
1) Both boys stayed home sick today and I got the short straw and Patti went into the office. I was helping J with some overdue homework (and working at passing another level of his video game) and Siah got into Patti’s makeup. He poured an entire bottle of foundation makeup on his hair and then covered that with a liberal helping of baby powder. Then he applied the same mixture to the new flooring in the bathroom and skated in it. Turns out that the foundation is oil based and took eight wash and rinse cycles with our not-so-cheep-hippie shampoo to get out (and he still had a nice skin-tone hue in his hair for the rest of the day).
2) Tonight, Siah found a tube of antibiotic cream and dosed his hair one more time (in case you are counting, this is the same day as #1). This effectively used up the rest of the shampoo. I will say that he has had a life-long aversion to getting his hair washed. He got soap in the eyes once and since then, he freaks and goes into the fetal position whenever I go to rinse his hair. When he has a good lather on, the fetal position does an effective job of getting more soap in his eye, thus proving again that shampoo is bad. Today we cured that. The last shampoo (I think this is lather and rinse cycle #15) he managed to stay looking up through the whole rinsing cycle. Attaboy!
3) OK, this is the one that I really need to record so that I can look back and laugh… I now own three new wax rings for my toilets. These are nifty little seals that connect your toilet to your floor/plumbing. You see, you need these whenever you have to remove your toilet, because they are not reusable. I have four toilets in my home, and Siah has become fascinated with the flusher knob / spinning water / gurgling sounds / filling up again thing. He has a particular interest in watching his precious movements go round and round and round and down. Because he cannot repeat the movements often enough for his interest level to be satisfied, he has gone through our house in search of poo-sized objects that he can use instead. Right now, I have three toilets that will not flush at all. I own an industrial toilet plumbing snake (He is our forth kid and we have learned a few things), but no dice! The snake does not move the water one bit. I mentioned that we have four kids, and it seems that non-flushing toilets are fine to use for nasty, disgusting colon cleansings, or at least they are fine until you realise that THEY DON’T FLUSH… OMG! ITS FLOODING!!! HEEEELLLLLLPPPPPP! (I’m keeping a good supply of grade 3 towels on hand).
So I have to 1) convince Siah not to flush anything else down the drain, 2) scoop brown water from the bowls into some bucket that will never get used again for ANYTHING! 3) remove toilets and find and remove blockages (this requires grade 3 towels as well) 4) use the nice new wax rings and replace the toilets.
I Kid You Not… My eldest just came in while I am typing this and told me that toilet #4 is blocked.