Jeremy – Page 4 – xangelle.com

I just don’t know……

What a day it’s been today and it’s only 12:45pm……CRAZY!

Right now, Jeremy and Josiah are outside for a little “Daily Physical Activity”, Judah is sleeping on the couch and I’m taking a moment for myself.

I kept Jeremy home from school today because I figured he needed a “Mental Health Day”. He’s been having some social difficulties at school and I’m concerned about him. Because of the severity of ADHD, there is a lot of “social conduct” that Jeremy has not learned. There are so many things that he just doesn’t “get” and it’s so hard because between him not understanding what is socially acceptable and unacceptable and him being “different” it can get him into social situations that look a lot like bullying. Not where he is bullying, but where he is being bullied.

I was talking with Jon yesterday about this and just comparing it to rape. Obviously, that is a bad comparison, but when it comes down to it….no woman “asks or deserves” to be raped and no child “asks or deserves” to be bullied…..regardless of what they do or do not do.

Jeremy is different. I will be the first to acknowledge that. Jeremy often makes awkward social choices without understanding how others will perceive him. He is not aware of how his actions come across or how they are inappropriate. And yet, the way he is currently being treated is not okay. Something has to change.

I’m not sure what the right thing to do is. I don’t want him to “quit”. I don’t want him to “give up”. This is not something that he should just “suck up” and “get over”. There are more and more kids committing suicide over bullying these days and while I don’t believe that is something that I need to worry about with Jeremy…..I don’t ever want it to get to the place where he might ever contemplate that. I want to advocate for him before it ever got anywhere close to that.

At the beginning of the year, Jeremy was so excited about school. He had such a positive outlook on school. He was excited about his teacher. He was excited because we were getting his meds tweaked. He was just really, really excited about school in general. So much has changed over the last 3 months. At this point, Jeremy wakes up in the morning and typically the first thing he says to me is that he’s not going to school. He continues to inform me that he’s not going to school until the moment I drop him off at school. And then from the minute he walks in the door, he lets me know that he hates school and that he’s not going back the next day…..He’s called me twice within the last week during the day to let me know that he’s stressed out and needs to come home. I don’t think that he’s being bullied the entire time that he’s at school, but I do think that the stress is wearing on him and making it difficult to focus and concentrate.

He called me yesterday crying and last night he fell apart. And so…..I told him that he could have a Mental Health day. He calmed a bit after that.

He is aware that he is going back to school tomorrow and today has not just been a free for all. I have contemplated home schooling him before. I have just as many pros as cons for doing it and for not doing it. It’s a tough call and ultimately I want to be able to do what is best for Jeremy while taking our family into consideration.

I see that there are things that are so beneficial for example….he’s got a science test coming up and we were studying for that. I was able to help him find the key points and we were able to talk through some of the issues that he didn’t fully understand. I had the ability to walk him through something one on one….and that I can see as totally beneficial. The down side to that, is that I had the two little boys going NUTS on me while I tried to do this. And it was a bit of a gong show. Now, it’s not something that we’ve done before and so I believe that they could learn to do something to entertain themselves which I would like them to do, but there is that factor of them being around to take into the mix. We were also able to play some classical music at the same time and Jeremy does seem to respond to that. He finds it easier to focus when there is classical music on…not something that they can do as easily in the classroom.

After the science, we worked on his spelling for a bit and I was able to test him orally while he walked around and moved. He got 14 out of 20 and seemed to really like the fact that he was allowed to move and pace. I made him print out the 6 words that he got wrong while standing at our kitchen counter…..on a wobble board. He does so much better when he can move and I think that it was a bonus.

After that, he played with both his brothers for ten minutes while I tidied up the kitchen. As much as that may seem silly…typically they fight when they play together and my rule was 10 minutes of playing with no fighting. Learning how to co-operate and problem solve while incorporating three very different age groups into the same activity. There was only one small squabble and Jeremy handled it very well….learning leadership….

After that we had an art period where we painted. We talked about how colors can be transparent or opaque and we started to paint some large garden rocks to prep them to become ladybugs. We talked about doing jobs with excellence especially if you are interested in selling them….he is…and how people want to buy things that are done with excellence. There is a higher value on well made items.

We cleaned up from our art time and then had lunch. I loved that Jeremy was able to eat a balanced and healthy lunch. I took the baby and nursed him to sleep and then shooshed the two boys outside for half an hour of Daily Physical Activity.

They are playing amazingly right now. Typically all I hear from them is fighting and screaming….so this is a bit of a Christmas miracle. I don’t know if the fact that everything has been broken down into small chunks of time has made a difference or what, but I like it.

When they come inside, I’ve got some math worksheets for Jeremy to do and then we are going to do 10 minutes of house tidying. After that I’m going to have them help me with making some cookies and we are going to talk about fractions and multiplication and division wile learning some home ec skills.

I’m also going to have Jeremy write up a journal entry about his day today.

There are so many good aspects of today and yet…I’m still not sure. What is the right thing to do? Would homeschooling him for half a year and then sending him back to school be the best thing for him? Would changing schools help? Would just sticking it out, be the best thing? What is the best thing for him? Is there even a “best thing” or do we just make a choice and go with it and believe that whatever we choose will work?

What do we do about the whole social skills thing? Obviously I could work on it with him at home, but it that the best thing??? Is it better to have an entire school to muddle through these things with? Is he really going to grow up to be in a position where he is in a huge group of people all the time or is there a greater likelihood that he winds up in a more solitary job? Does he need peace for his own mental good and what gives him the greatest amount of peace? I don’t know all the answers to my questions and that’s tough on me.

I like to know. I like to have a plan and for this…..I’m unsure. I don’t want to romanticize something and yet at the same time, i don’t want to pass something by that could be the best thing for him. Or it could be the worst thing for him….I just don’t know.

I just don’t know.

And so for now….I just keep encouraging him to forgive. I keep encouraging him to keep his heart soft and to not harden it. I keep encouraging him to try and try and try again.

Wrap Up – FINALLY!

I’m finally getting to the last day of our Wish Trip and while I think that no one really cares about our flight home, there were enough things that I want to make note of and remember that even though it was over a month ago, I’m going to go ahead and wrap it all up.

We had to have our luggage out in the hallway on the Friday night by 10pm or else we had to carry it with us and let me tell you, luggage for 7 people….you don’t really want to be carrying that around especially when you have two adults, one weak teenager, one mostly helpful teenager, a curious child with ADHD, a useless but fun loving 4 year old and a 30lb baby! It’s enough work just to get ourselves from point A to point B without thinking about and wrestling luggage as well.

The weather was bad the whole night and the boat shifted and pitched and rocked. While it was the coolest feeling, I was also awake to feel it and the awake part of that equation…not so cool!

On Saturday morning, we had to be down in the restaurant for breakfast by 6:45am. We made it there by 6:50am and so that’s a win in my books!

We were TIRED! See the CRANKY baby! Cranky babies are fun to travel with, NOT!

Jeremy was pretty sad that the cruise was over and he whined and moped his way through breakfast.

After breakfast, we were scheduled to disembark at 8am and so we lined up and eventually got off the boat. We went through the cruise security, picked up our luggage and got onto the bus to head back to the airport. We got to the Airport around 10:30ish, needed to re-pack a few things and then attempted to check in for our flight.

Unfortunately, we were not allowed to check in until 4 hours prior to our flight and so we needed to waste some time. Yup, our flight wasn’t leaving until later that afternoon and WHEE!!!!!! we were hanging out in the Orlando Airport OH THE JOY!

It had been such a good trip and at the same time we were so ready to go home.

We walked around a bit, we hunted down some gluten free food, we looked through the stores, we walked some more….and finally the time was close enough that we could head down to our gate.

I had really been hoping that Judah would stay awake until we got on the plane and then sleep the whole first plane trip but it didn’t work out that way.

Siah was done by about this point and fortunately, the people that were all around us had also been on the cruise, with children, and completely understood Siah’s limp frog routine on the floor….fortunately it was a fairly quiet performance and so we just left him to have at it.

We waited until everyone else had boarded before we got on…I figured it would help (everyone) if we weren’t on the plane for an extra half an hour.

Judah woke up about half an hour after the plane took off but Siah had HAD it and he slept HARD for most of the flight from Orlando to Denver.

We had a two hour layover in Denver and seeing as Jon used to work in the Denver Airport, we went to a little taco stand that he knew of….the food was very yummy and between eating and looking for souvenirs, the time flew by fairly quickly. Pretty soon we were waiting at our gate for the flight to Vancouver…

The flight was just a short flight and there was no movie planned but when the flight attendants heard that Angelica had been on a Wish Trip, they wanted to make this flight home special for her. They showed her the movie listing and got her to choose a movie as the in-flight movie. That was pretty fun. Towards the end of the flight one of the attendants came up and asked if Geli and the kids would like to see the cockpit after the flight landed. Jeremy and Geli were really excited about that and so when we landed and everyone else had left the plane, the pilot brought Jeremy and Angelica into the cockpit…

It was a pretty neat experience…

And a great way to end the trip.

Jon’s parents met us at the airport and drove us and all our luggage home.

We got home, dumped everything inside the front door, threw pajamas on everyone and jumped into bed, so thankful to be sleeping in our own beds.

It was an amazing trip and we were so thankful to have been blessed by the Children’s Wish Foundation. This is and was truly the experience of a life time.

I am Jeremy

Jeremy came home from school the other day with the poem and it’s too cute to not share. It also gives a good glimpse into his brain and how it works and what things are important to him along with a few random seeming not related things thrown in there just because….

I love this little man!

I am Jeremy, smart and funny
I wonder what movies you watch
I hear the birds chirping
I see the birds
I want a PS3
I am Jeremy, smart and funny

I pretend I’m at home
I feel the wind
I touch the computer
I worry about Josiah getting in my room
I cry when I get hurt
I am Jeremy, smart and funny

I understand games
I say I love you mom
I dream of games
I try to have strait A’s
I hope you will me give me a PS3
I am Jeremy, smart and funny!

One Month in….

We had another meeting with the psychologist at the ADHD Clinic at BC Children’s Hospital yesterday.

It was the one month appointment to assess how Jeremy is doing with the medicine change. We actually made it on time, although JUST….stupid traffic. What is up with that? It took a solid hour and half to get in….so annoying.

It wasn’t the best appointment that we’ve ever had, but neither was it the worst.

The hardest part of it was that we had to bring the two little boys with us because I forgot to get a sitter. Yah, I remembered at 11pm on Tuesday night that I needed someone to watch the boys. Things have been a bit nuts around here and we’ve recently had some stressful changes in our lives (more on that a bit later) and with all the stress….I just forgot.

A curious one year old and a busy 4 year old do not allow for great conversation. We did manage to talk through a few things and basically the long and the short of it is that the Dr. is increasing Jeremy’s meds….both the Vyvanse and the Risperidone.

Over this past month, we have seen some small changes but not what the psychologist has said that she expects to see when we have the correct dosages for Jeremy. When he initially started taking the Respiridone, he was falling asleep easily, sleeping soundly, and waking refreshed. In the past week and half, we noticed that he was unable to fall asleep and it was looking more and more like it used to….the most unsettling part of that was how upset Jeremy was to not be able to get to sleep. We’ve not noticed that he’s had any great and amazing focus or attention benefits either…..

We’ve noticed small changes, like the odd time when he thinks of others outside of himself, or when he notices that something he is doing is inappropriate and makes an attempt to modify his behaviour. It’s only happened a handful of times over the past month but even 4-5 times is better than never, no?

He’s also gained more than 5 pounds over the past month and is eating EVERYTHING in sight. As annoying it is to hear him constantly asking for food, it’s also been very nice because I feel like he is actually being nourished instead of on the brink of starvation.

It’s been a good month for Jeremy and we are hoping for an even better month in November with this medicine adjustment.

This is not an easy road, but man, is he a sweet kid. He is growing up to be such an amazing young man and we love him so much. He will be a great success in his life, of this we have NO DOUBT!

Ambleside

Last Tuesday we woke up and it was just another day.

This summer has been a bit of a bummer. It has not gone exactly how we had planned or expected and while nothing terrible has happened, it’s not been as relaxing as I’d hoped!

Around 9:30am, I decided that if the kids and I could get the house cleaned and packed and ready to go by 11:30am – that we’d head out to the beach. At this point, I still wasn’t sure which beach I would head to as they are all about an hour away from us, but I was determined that we were not going to just sit at home and do nothing for one more day.

The kids were pretty excited and we managed to get everything ready and done just after 11:30am and so off we went.

As I pulled out of the driveway, I was still unsure about where we should go…I was contemplating 3 different beaches…White Rock, Spanish Banks and Ambleside.

In the end, Ambleside in West Vancouver won out mostly because I could park and be on the sand in about 20 steps and with 5 kids in tow and all our gear – the close proximity to the beach, the parking spot and the bathroom were key factors in my decision.

Traffic was NON-EXISTANT and we made it there in just under and hour. The weather was not AMAZING, but neither did it suck. It was one of those days, where it was cloudy, but there was still the possibility of getting a burn if you didn’t take the right precautions.

As soon as we hit the sand, the boys were gone, headed straight for the water. Jeremy stopped long enough to point out a good spot that he figured I should put the blankets down on and I agreed, it was a pretty good spot.

We laid the blankets out and put the baby on them and he instantly crawled the edge of the blanket and picked up handfuls of sand and hucked them ALL OVER THE BLANKETS! At that point, I moved him over into the middle of one of the blankets and then took possession of that blanket. The girls shook all the sand off the other blanket and ATTEMPTED to keep it sand-free…….between the baby and the 3 year, it was a losing battle. I didn’t even try to stop him from loading up my blanket and to be honest, I just didn’t care.

The kids played and played and played and played.

The weather was perfect….warm enough that you could just wear a tank top, but cool and cloudy enough to keep just about everyone else from coming to the beach.

The kids tried to go in the water and the girls went in past their waists…..crazy kids. Josiah went in but decided that he didn’t want to go in, but then fell in and so that was that.

He came up and got a towel from me but from that point on, he was a sandy mess….it was…..AWESOME! sort of….

The kids were playing so nicely together and except for the occasional squabble between Jeremy and Josiah, it was the best couple of hours that we’ve had in a while.

I was able to just sit and then every once in a while retrieve Judah and bring him back to the blanket….and then he’d start crawling back towards the water again stopping every now and then to pick up some random object and put it in his mouth.

The kids splashed in the water, made a sand wall, dug a hole, buried Jeremy, and played on the playground. We ate lunch and had snacks and went to the bathroom and the only mildly upsetting time was when we lost Josiah for about 90 seconds. He had come back with me (from the bathroom) and was right behind me. I guess, when we walked over the cement wall and onto the beach, he stayed on the wall and walked back along it towards the bathroom. I made it back to the blanket (which was about 10 feet away) and sat down. Talk to the girls about how the baby was when I was gone, turned around and Siah was gone…..Xani and I ran around like chickens with our heads cut off and fortunately, the lady next to us spotted him on the wall back by the bathrooms…..I had a short little chat with him and after that, he stayed pretty close.

The biggest downside to the day was when Jeremy decided to not feel well about an hour before we had planned to come home. He was complaining of a headache and an upset tummy and stopped playing, wrapped his head in a towel and lay down on the blanket. Then he wanted to go and sit in the van and was moaning loudly about needing to barf.

After that, We packed up pretty quickly and headed home….unfortunately, the traffic was just starting and we had about an hour and a half drive from West Vancouver back to Langley. FORTUNATELY, Jeremy slept the whole way home and that seemed to help a little. He never did end up barfing (Thank God!) and by the next day he was 100%, so who knows what his issue was????

It was an awesome day and we will definitely be headed back there before the summer is over.

If you’re interested, you can see all of my photos from our Ambleside Adventure by clicking here!

A Moment To Breathe….

Jon sent me to Starbucks to get away from the house and kids for an hour or so on Saturday morning and while I avoided writing anything for the first hour, I figured that I should at least try to work out some of the crap that is banging around inside of me……..

I’m sitting in Starbucks feeling like I should at the very least attempt to put my thoughts down onto paper.

I’ve been so all over the place recently and it’s frustrating me.

I want to be able to talk about how I’m feeling and why, but every time I think about what I want to say it all comes across whiney and needy and I hate that.

The church that Jon works for is going through a tough patch and he’s not gotten paid in the last month and while we’ve managed to scrape up some funds from small tech jobs here and there……it’s only just been barely enough to cover the bills AND he’s been crazy busy trying to juggle everything.

I have been SO FRIED from this past year and I was really REALLY hoping that I’d get the summer to be able to rest and recuperate and instead of having a slower paced life and more time with Jon….I’ve had more heaped on me and less time with him…..that part sounds like whining – I know…..but I love Jon…I love being with Jon….I love talking with him and working things out with him. We work so well together as a team…and this past year has stressed and strained us so much! We are okay! We are dealing with “ALL THIS”, but I miss him so badly and I desperately wish that we had some time with each other….but it’s not really happening right now.

And now….this whole post has gotten de-railed for me because I feel bad for whining about my problems and issues when there are people out there who would give anything to be in my shoes…..

I guess it shouldn’t be de-railed because I still have a ton of other issues in my life, and I’m not really sure who would want to trade for those…

I guess what I’m saying is that no one’s life is perfect and I’d give grace to someone else who was complaining about their life and the tough things that they were going through and so why shouldn’t I expect that others would treat me the same way?

I guess this all goes back to m not wanting to bother people….I struggle with that so much. I don’t want to talk about how tough my life is when I know that others are struggling with their lives and yet, why am I okay with them having issues and talking about it?

I dunno. Any thoughts?

Another thing that is weighing heavy on me is the whole Autism/Aspergers thing with Jeremy. I’m terrified of not getting a diagnosis and yet when going through this process – you must come face to face with all the negative aspects of this “syndrome” or “disorder” and well…..it’s pretty negative.

To have to list down on paper all the areas that your child struggles with, to have to admit that it’s pretty bad……to see what is considered “normal” or “neuro-typical” and to see that your child is not even anywhere close that that ideal……. When, over the past 10 years, you’ve come up with coping mechanisms and put measures into play to structure your lives so that you can pre-empt the negative aspects of this “disorder” but then to realize that it’s “not normal” to have to live like that…its tough!

What’s even harder is when your child is desperate to be around people and yet they don’t realize that their actions make people uncomfortable……..and aside from explaining to people (most of whom don’t care or understand or care to understand) that your son has……..has what???? He’s not been officially diagnosed and then I’m right back at the whole, “I’m terrified that he’s not going to get diagnosed and we’re going to have to do all of “THIS” by ourselves” and I know that at this exact moment I don’t have all the answers that we need to help him be the most successful person that he could become…….it just about destroys me!

On top of that, I’ve been noticing that Siah is displaying some of the symptoms of being on the Autistic Spectrum…..it’s difficult to get him to look you in the eye. He is very literal. He doesn’t do a lot of pretend play. He has melt downs when things aren’t exactly as he expects them to be (I’m not just talking about typical 3 year old behaviour)….He is less understanding of social situations than “normal” kids…..and although he doesn’t seem to struggle as badly as Jeremy does….he’s only 3! This means that he’s not in a lot of the same social situations that we see Jeremy struggling in.

We were supposed to get a call in July to book an appointment in August for Jeremy and I’ve not heard anything yet. So I did call in to our case worker on Friday, but…..she only works on Tuesdays and Wednesday’s and so I’ve got to wait until Tuesday before I hear back from her……GAH! I’m so sick of waiting.

I really wanted to get this dealt with BEFORE Jeremy went back to school so that he could get started on the right foot and not be struggling from behind……..I’m still hoping that we are still on track for an August Appointment for Jeremy.

Well, After all of that…..I’m outta time. I’ve got to head home back to the masses. I’m just gonna post this for tomorrow and hope that if it comes across poorly, that you’ll all just have grace for me…..well, cause if you don’t, I’ll just cry. I might just cry anyway!

GAH! I don’t really feel like I’ve worked anything out inside of myself and I hate that……

I do believe that I’ll be okay….that we’ll be okay but I’m tired! I’m tired of feeling like I’m fighting for everything……I just want a moment…..a moment where I’m not struggling or fighting. I just want a moment to breathe…..

Lynn Headwaters

There are adventures that we’ve had that I don’t want to forget about and so in between the posts about New York, I’ll be sharing some of our recent adventures…..if I don’t, then I’ll get too far behind and when that happens, then I don’t even want to post about them…but the New York posts are coming…I promise!!!!

Last Saturday, before we headed out to the airport to pick up Geli…..Jon and the boys and I headed into North Vancouver for an adventure.

We had thought about going to Lynn Canyon, but I didn’t think we’d be able to navigate the trails with the stroller and I didn’t feel like carrying 30lbs of Judah around and so we went to where there were trails…

Just before we hit the trails, I grabbed Jeremy in for a quick squish, this way there is at least some photographic evidence that I am in fact on this particular adventure.

This is an “in motion” photo…..these little boys are ALWAYS MOVING! We had to park in the first overflow parking lot as the parking lot was full…..so we hiked up the road a little till we got to the headwater trails…

We stopped and had a bathroom break before we headed out because a certain little boy has a bladder the size of a…….well, I was going to say pea, but somehow that just doesn’t sound proper and so lets ust say that he ALWAYS has to go and just leave it at that…

While we waited for the big boys to finish up the paperwork, Siah was showing me how he was gonna go all ninja on any bears that he saw….

We crossed the little bridge and the boys were so excited, Jon had to hold them back from flinging themselves into the rushing water below….okay, well not quite, but we both felt a little stressed at how excited they were and how big those gaps were in the “fence”…

We walked up the path and turned right…..we really had no plan and we were mostly killing time while letting the boys run “wild” out in the bushes where they really can’t “wreck” anything…..and so we took our time and climbed on top of the rocks and took pictures of them doing anything and everything….

We walked down the path a bit more and came to this cement tube and before we could say or do anything, Josiah cimbed feet first into and slide right through and out the other end….it’s not a big tube but he fit – thankfully – and didn’t get stuck!!!! He was a little dirtier than we had planned and we still had to go and get Geli….so we told him…no more exploring like that…..if you look very carefully, you can see his little face peering up from the bottom of the tube.

Judah wasn’t really sure why he had to stay in the buggy. He really , Really, REALLY (with a lot of screechiness and general upsetedness) let us know that he really wanted to get down and play in the dirt too!

Jeremy showing us that he is the “king of the world”….

I really, love BC…..I love the trees and the woods and……well, it’s JUST! SO! BEAUTIFUL!

We did let Judah get out while the older boys were “exploring” in the trees. He really liked the rocks. He’s in a bit of a throwing stage right now…it’s fun…sometimes!

When it was time to move on, this was about how happy Judah was that he had to get back into the buggy….and so we ended up carrying him anyway. So silly!

I don’t know why exactly, but I LOVE this next photo.

I think this tree looks like a Shrek House and aren’t my boys cute!

After this, my phone died and I didn’t get any more photos, BUT….basically, we turned around and headed back to the van because it was time head into Vancouver to go to the airport to pick up Geli….

The boys were asking to go back even before we left and so I’m hoping we’ll have another opportunity to get back into Lynn Valley before the summer is over!

Verbal Diarrhea

I’m not sure what the deal is, but today…….I’M TIRED!

I would give just about anything to be able to crawl back in bed right now, but that’s not an option and so instead of feeling sorry for myself – I’ve got to somehow give myself a shake and carry on with my day.

There is so much that I really should be doing and none of it that I really want to do….how’s that for incentive for ya?

Jon and Judah up at Harrison Hot Springs! Love his hair!

Geli had her second dose of Chemo for this round this past Friday and she seemed to handle it a bit better than the week before. It could have something to do with how we’ve managed the meds/nausea, but she felt less sick that the previous week. This is the first “off of the steroid” week and while she didn’t feel as nauseated, she was in quite a bit of pain.

I mentioned before that when she is coming off of the steroid, that her joints can end up hurting quite badly. She didn’t feel bad enough to want to take the codeine or morphine but the constant pain is wearing…..She felt that the pain level reached a 4 out of ten, on the pain scale level. Which I think is enough to have taken something, but she didn’t want to, and so she didn’t.

Fortunately, the pain from her joints has mostly subsided and aside from the random wave of nausea and the odd headache, she is doing quite well. She was at school part of yesterday and has gone again today. Our Doctor figured that she may be able to attend quite a bit of this month, which is a nice bonus as we figured that her counts would be quite low for most of this round….but hey, we’ll take the higher counts as it means more protection from her immune system – YAH for that!

I’m extremely frustrated with Judah….he is the WORST day time napper that I’ve ever had. He might go down for al of 10 minutes and then he’ll wake up crying and screaming. I know that he’s not ready to wake up and yet…..he doesn’t want to settle again and ARGH…..A cranky, crying, overtired baby is not fun!

Neither is a cranky, crying, overtired mom…..

We have a meeting tomorrow at Jeremy’s school to talk about him, and really – there is a lot to that part of the story and I don’t have the time or the energy to get into it….and so, I’ll just say that we are still moving forward with Jeremy and that it’s a tough journey at times, but man, if he isn’t just a lovely little boy with such a gentle spirit. I sure love him!

For the most part, Xandra is doing AMAZINGLY WELL. We took her to the pediatrician about a month ago, I think? and he is treating her for ADD/ADHD and the difference in her is UNBELIEVABLE! She is looking and acting and producing work a lot more like the Xandra from years gone by…….It’s frustrating that this all came about at the same time as Geli’s diagnosis and treatment and I wish that we’d been more on top of things because I believe she went too far down a road that she never needed to go on. We could have caught things sooner. I’m not sure if I mentioned this before, but ADDD presents itself differently in girls than in boys. Typically, girls are diagnosed around 12 years of age when organization is a bit more complicated (as in when Grade 7 teachers start to train the kids to be able to handle the High School organization structure). For us, we were not sure if Xani was just stressed about the Cancer stuff or the family stuff or school stuff or how much of all of the different things played into her stress levels, but to give her some medicine so that at the very least, she can organize and structure her life better……it has made a HUGE difference. Xandra is a very bright little girl and has always done extremely well in school. This year, she has not shown even a part of how capable and intelligent she is and we just wrote it off to the chaos and stress (which I’m sure are contributors) but in the past couple of weeks since putting her on the meds…..her marks have come up drastically and she is better able to plan out her work load….it’s made a drastic difference in both her schoolwork AND in her stress levels. And we are SO thrilled that she is doing better.

The Teen Oncology Group is having another function tomorrow night and they are probably going to Theater Sports. So, Jon and I (and Judah) are headed into town for Wednesday evening. I’m not sure what Jon and I are going to do……any suggestions? We are looking at being there probably around 5pm and having to pick Angelica up around 8:00pm.

If you are local or know Vancouver, what is your favorite thing to do?

Behind the Scenes….

This is what has been happening at our house, last night and this morning…

We had a great family get together yesterday afternoon and then Xani started barfing. Between last night and this morning she barfed 7 times….and we won’t event talk about what else was going on “behind the scenes” if you know what I mean….This morning she woke up with a fever…..this is so frustrating.

We moved Xani’s mattress into the TV room mostly to keep her and Geli separated. We are desperately hoping and praying that this “whatever it is” will skip Geli.

Over the weekend, Geli had a reaction to a bandaid and we think it’s a combination of the adhesive and the one chemo drug that she’s getting. Something similar happened once before. She has a bunch of blisters on her arm around where they drew blood on Wednesday and it hurts really bad. We have been applying Polysporin and praying that it just goes away and doesn’t cause any big problems. Her counts are high enough that we are hoping that she will be able to fight it off herself.

She did throw up her breakfast this morning though which scored her the right to stay at home today. And seeing as she is fine other than that barf…..I’m saying that it’s chemo related and not sickness related….at least it seems that way.

Jeremy also woke up this morning with his own “behind the scenes” action and he’s been alternately laying on the couch and laying in the bath this morning…..really not feeling very well at all. He keeps threatening to barf and we have a bowl close by, just in case.

There is a lot of soup and weak peppermint tea being handed out and we are praying that whatever this is….that it just stops now.

I was SO looking forward to everyone going back to school and Jon and I being able to relax on his one day off and nope…….so I’m pouting and whining a bit. I’ll be ok, but I’ve had enough of vomiting and diarrhea to last me a life time….

While I’m cleaning up vomit and other behind the scene messes…..do you have any humorous life stories to share with me? I’d love to hear from you….and I could really use the laugh today!

15 out of 56

Well, we are 15 days (2+ weeks) into Delayed Intensification 2 which is 56 days long (8 weeks). This is the second to last stage before Maintenance. So far, Geli has had a Lumbar Puncture, one dose of Intrathecal Methotrexate (into her spinal fluid), one dose of Peg L-asparaginase divided into two shots (one in each thigh). She has had two doses of Vincristine and 2 doses of Methotrexate (both of those into her port in her chest).

She has been doing pretty well. There have been some down times, some barfy feeling moments, and a lot of great moments. Some times the chemo makes food and water taste “off” and that sucks. Sometimes, it’s difficult to sleep and yet regardless of how much sleep Geli does get, she feels overly tired most of the time.

Her body is working overtime to heal and process the poison injected into it and she’s fighting so hard and most definitely winning this race.

Geli has been at school all last week, except for Thursday when she had to go in for her last chemo dose. She has no chemo this week and we are planning for another great week at school.

As her parents, we are thrilled to see her attending school, hanging out with her friends, just being as normal as is possible in this crazy situation.

She is working hard on her grade 8 school work and while she’s not done as much work as is required from her school mates, she’s done really well on keeping up to date with the essential assignments that her teachers have given to her.

Angelica and a friend scored a perfect mark on an oral presentation that they have been working on over the past month or so. That was definitely a bright spot over this last week.

We’ve been out walking most days and the exercise and fresh air are wonderful. You don’t realize how much you take your health for granted until you spend a huge portion of a year not feeling well and laying on a couch and then you realize that even a simple walk requires almost more effort than you have to give. BUT….summer’s coming and swimming is important enough that we are trying to build up strength so that we will be able to swim without needing a life jacket or having to rest after 5 mins.

We are really, REALLY looking forward to summer. Angelica will be on Maintenance and we will be defining a new normal and this summer will be a most welcome break from this past year. I think that we are all looking forward to a bit of a relaxing summer.

I’ve been trying desperately to stay on top of the house and have been running at warp speed from morning till night and unfortunately most of the night too (thank you very much children). I’ve had almost no down time and I’m desperate for summer with no homework, a bit more of a relaxed schedule, once a month visits into the hospital, no deadlines……I can’t wait.

We have managed to turn our house up side down and I think its a good thing, BUT…..it’s not without it’s challenges. We did move our bedroom down to the basement along with the two little boys. Geli and Xani are up in what was the master bedroom. Jeremy is still is his room and we’ve moved the “TV/Rec Room” up to the big room that used to be Siah’s. I will try to get pictures soon, but so far this particular room arrangement is working well.

Xani is still struggling pretty hard and it’s difficult to watch her struggle and hurt.

Jeremy is rocking his Lego Root Camp and just being Jeremy. Recently, we tweaked the meds that he’s taking and it’s made a great difference.

Josiah is 3 years old and while the whiny voice and testing of behavior is not the most fun….he’s doing really well. I believe that he’s settled greatly from the initial chaos and while there are still things that we can and will work on with him….he’s doing SO much better. We’ve been trying to color a bit and he’s loves to spend one on one time with anyone. He stresses a bit about not knowing “how” to color and wants to have one of us color “with” him by putting our hand over his, but we keep practicing and he’s getting a bit more confident that he “can” color all by himself.

Judah is getting so big and I can hardly believe that 8 months have past us by. While I’m still not eating wheat (he seemed to have some gluten issues), soy or dairy….the intestinal issues that Judah was dealing with seem to have settled and he is doing much better. I have never really had a baby who has eating issues and yet, Judah is giving me a run for my money.

He will eat rice puffs or rice cakes or potato puffs any time any where, but try to give him some thing that might actually have taste or nutritional value in it and he clamps his lips and crosses his arms in front of his face and uses his arms in a windshield wiping motion to knock the spoon out of your hand.

I’ve tried to see if he will feed himself and it’s very hit and miss and so I’m not stressing about it too much because I don’t want to “create” a HUGE issue. He’ll eat when he eats and seriously…..it’s not like he’s wasting away, eh? He’s quite the chunk!

He has the sweetest personality and is so happy and squish-able and lovable and we are just so thrilled he is ours. (I just wish he’d sleep a little more consistently – he can….it’s just very hit and miss and I think that more sleep would make this whole situation just a little easier to handle.)

All said, we are doing okay! I wouldn’t say that things are the MOST AMAZING EVER, but we are surviving. One day at a time, we are making it through this…….A lot of that is due to you and your prayers, encouragement, love and support……we are so thankful to you all.

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