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We’re Baaaaa-aaaack!

Well, it’s Wednesday night around 5:30pm and I think that aside from sleeping…this is the first time I’ve sat down since we’ve gotten home.

Yah, things have been a bit busy, a little insane and to top it all off, we’ve been EXTREMELY exhausted!

Fun Times!

We had an AMAZING trip – a HUGE THANKS to Children’s Wish – without them, Angelica’s Wish Trip would have not been a possibility. We are so blown away by the generosity we have been shown.

I think that I’m gonna break the trip up into a few posts because there is just WAY TOO MUCH to share and it would be the worlds longest post if I tried to combine it all into just one.

It seems like forever ago that we were trying to get everything ready to go….

I climbed into bed just after midnight and tried to get my brain to settle down but it didn’t work very well. I’d been going, going, going for the past 3 days and had a horrible time to settle. I fell asleep shorty after 1:00am and woke up at….

It was a miracle….the baby slept through the night….well, he slept all the way from when we put him to bed until we picked him up and put him in the carseat to drive to the airport.

Here she is….the “Wish Girl”. Awake and ready for her trip….well, mostly awake but Oh! So! Excited!

We finally were all in the car and ready to go….

All I’ve got is camera phone pictures and so the quality is not that amazing!

We made it to the Airport perfectly on time and got checked in. There was an issue with us checking in…..a boarding pass for Judah never printed off….and there was quite a kufuffle as they tried to get one printed for him. Finally they printed an extra one of ours and crossed out our name and write his name on instead.

By this point, the kids were hungry and we had about an hour until our plane boarded….Jon went looking for something that would be gluten-free so that Judah and I could eat it as well…

….at this point last night, I had to take Angelica to physio and then it was a whirlwind of bedtime activities and now it’s 8am on Thursday morning….and sometimes I just wish my life would slow down for a while…

Jon eventually found something that was safe for us to eat and soon after we boarded. The whole concept of flying in an airplane was almost as exciting as the Cruise…..the kids were enthralled with the “tv’s” in the back of each chair…

We finally settled in for the 4.5 hour flight to Houston. The early morning excitement (and the Gravol that I fed them) took it’s toll and a few of the kids slept.

The baby woke up midway through the flight and of all the kids, he was the most difficult to entertain and even then, he did SO good!

We had enough time in The Houston Airport to find some food and pick up a souvenir or two and then we headed to our gate and waited there for a while. Trying to find gluten-free food on the go and in unfamiliar places is not the easiest, but fortunately there are enough places to choose from and we were able to find food every time we needed it.

Josiah was so excited about the idea of the airplane and he just watched out the window at all the activity as the airplane taxied up to the tunnel and unloaded and loaded up all the luggage….

We finally boarded the second flight to Orlando and although the kids were doing so well, we were all getting tired. We ended up traveling for 10 hours that day and we were all tired out by the end of the day….add in a 3 hour time change and there is a recipe for a disaster, but it all went so well. I have some pretty amazing kids, if I do say so myself.

We showed up in the Orlando Airport and spent some time trying to figure out where our luggage was and where we were supposed to go and finally we got checked into the Hyatt and found our luggage and went to grab a quick bit to eat…..this was probably the worst part of the day.

We asked for a gluten-free meal and the chef even came out to talk to me about it and then when the meal came, I ate a bite and then looked closer and was sure that there was barley in the rice mixture….I asked about it yes, they had given me the regular portion….I was pretty thankful that Judah had refused a bite when I had offered it to him but was pretty upset that they had messed up like that. I left and went back up to the room while the rest of the family finished up their food. The restaurant was so apologetic, and did give me a gluten-free dinner after that, but it really set me up to feel very stressed about food for the rest of the trip…..

Having said that, if that was the worst part of the whole trip that day….then the day went pretty well, considering that we woke up at 3am and traveled ALL DAY and didn’t get to sleep until after 10pm Florida time.

We finally got everyone to sleep, even though they were SO excited about heading out on the cruise the next day.

If you’re interested in seeing any more photo’s from our first day, click here!

A Starting Point….some thoughts on ADHD

We left our house at 8:30am yesterday morning and arrived at the hospital at 10:30am.

Yup, it took 2 hours to get into town and there was no accident that we heard of or could find on any of the radio stations or Twitter (I love @news1130radio).

We called into the Clinic just after 9am to let them know that we hadn’t even reached the Bridge yet. I was thinking that we might be approx. 10 minutes late – not HALF AN HOUR!

Unfortunately, this cut into our appointment time and while the Dr that we met with was super nice and did take some extra time, our appointment was a bit rushed and we didn’t get the full time allotted to us.

We are still processing all the information that we received in our appointment but for the most part it was good.

This psychologist once again confirmed, after a short conversation with Jeremy, that he is NOT Autistic. Not that we were harboring hopes that he is, but she just let us know that there is no way. He is just too interested in being a part of the world around him.

We talked briefly through his history and through his meds that he’s currently on and then because of the lack of time, she cut to the chase…..

She wants to try Jeremy on two different medicines than the current cocktail that he’s been on. After listening to us talk about some of the things that Jeremy struggles with as an individual and that our family struggles with as a whole, she doesn’t believe that his meds have been helping him hardly at all.

According to her and to the Psychologist who assessed him for Autism, it should be a night and day difference.

The problem that we’ve been having is with what our interpretation of what Night and Day difference means.

See, if Jeremy struggles with Impulsivity, Hyperactivity, Inattentiveness, has problems reading & recognizing social cues, and organization along with a host of other things…..once he gets on the correct balance of meds…..those things should mostly disappear and he should appear and act as a fairly typical child.

I didn’t even know that was possible!

For the past 4 years, we’ve been giving Jeremy medicine to “help” with the ADHD and if all of those problems were rated out of scale of 1-10 with 1 being non-existant and 10 being the worst….without meds, Jeremy probably rates a solid 8 or 9 out of 10. On meds, we might be hitting a 4 out of 10. A normal boy might fall in the 1-2 out of 10 range.

If you knew/know what it’s like to live with an un-medicated Jeremy, and then to see him with the meds in his system….the 4 out of 10 sounds and looks pretty amazing! COMPARATIVELY speaking!

But then understand that for the past 10 years, we’ve been living with and loving on and working with a child who lives and breathes ENERGY! EVERY! WAKING! MOMENT! and quite honestly….because he has trouble sleeping….even the nights are scarey. When he was little and we lived in Abbotsford, he would wake up and roam the house and there was one night that he even opened the door to go outside. Now, fortunately we had an alarm system and so we caught him, but my point is that even during the night we had to be vigilant and we couldn’t let our guards down for even a minute.

That’s a whole lot of stress on a family….on a parent!

Living with a child who has special needs is not easy. We don’t go out very often. We don’t visit places or people very often and when we do, its with a great deal of stress on my part. There have been too many people in our past who have openly judged him and us for his behavior or lack of understanding of appropriate social expectations. ADHD is not something that most people just “understand” unless they know or have someone with ADHD in their lives or unless they’ve taken the time to understand. Too often it’s seen as a “bad child” or “bad parenting”. If people knew how hard we work with Jeremy and recognized how much effort we put in to this there might be less judgment or at the very least more understanding. One HUGELY DIFFICULT thing in all of this is that we put a HUGE amount of effort in and to see him “in action” you might not think that we’ve done anything. We may look like hugely lenient parents and we are anything but…..can you imagine where he would be if we didn’t work as hard as we do. It’s tough to feel like all your efforts don’t mean very much! To have a child with ADD/ADHD is really tough.

To explain……I don’t like to go places where Jeremy may do things that are inappropriate. That’s pretty much EVERYWHERE! I know that he’s going to act inappropriately in any number of situations or ways and I try, with everything in me, to “stay on top of him“, to be aware of where he is 100% of the time. I try to be aware of who’s time he is monopolizing, of what he’s saying, and what actions he is doing that others might find offensive…..because my reality has been that of judgement.

He looks like a normal child. He can talk (boy can he talk)! He can reason! He loves to share jokes and talk about his creative ideas….he just doesn’t know what’s acceptable and what’s not and he can’t even tell that you might not be interested. For example, He might try to tickle a small child and instead of doing it once or twice and seeing the baby smile and then stopping…..he might do it 10 or 15 times, until the parent is trying to protect their child from him….and even then…he might not clue in that the parent is uncomfortable, unless they actually say something like, “Please stop that. The Baby isn’t finding that funny any more and I would like you to stop.” Typically what happens in a situation like that, is that the parent laughs nervously, attempts to indicate in a subtle way that they don’t think the baby is enjoying the attention. Jeremy will the indicate that for sure they are because they are laughing. The parent will try again, subtly to get him to stop….by this point any normal person in Jeremy’s position would be embarrassed because the parent is obviously not happy but Jeremy is still going because he doesn’t catch the subtleties of the situation and finally the parent gets upset and rudely tells Jeremy to back off and then we either hear about the situation first hand OR what’s worse, is when we hear about how strange (or awful) our child is through another person that the parent talked with……

That’s just one example….but that has been our life….

So I go anywhere and everywhere, strung out and stressed out and wired as tight as a spring even before we go anywhere because it’s not about the possibility of Jeremy doing something inappropriate….that’s a given….it’s just how badly the situation will go and how understanding or judgmental the people on the other end will be.

According to the ADHD physcologist, Jeremy is ADHD (Attention Deficit Hyperactive Disorder) and is also dealing with ODD (Oppositional Defiant Disorder). When she said ODD, Jon and I were both taken back, but she explained that it’s not that’s he’s openly defiant in an aggressive, destructive manner. He does, however, question and challenge almost everything, and in that manner….he meets the criteria for the oppositional part of that diagnosis….

I don’t believe that all these letters (ADD/ADHD/ODD or any others) DEFINE Jeremy but that they give us a starting point to be able to talk with other professionals in a knowledgeable manner. It’s a starting point. It’s a common ground that we can meet together at to discuss how Jeremy can move forward in a successful way.

I will be honest and say that the meds stress me out some. If you know me….you know that I’d rather do things all naturally. Not that in my life right now that’s even a possibility (what with the CHEMOTHERAPY and all) but I don’t like to use chemical’s in my house. I don’t like to use chemical’s on our bodies and I certainly don’t like to put chemicals into our bodies…. I struggled with medicating Jeremy in the first place. It’s not really gotten any easier over the past 4 years.

The Dr has prescribed Jeremy two meds. One is called Vyvanse and the other is Risperidone.

The Risperidone is being used to help with anxiety, disruptive behavior and eating disorders. There is a huge amount of anxiety that comes with not knowing what to expect from certain situations or people, and from not being able to focus your thoughts…especially when it’s expected of you. When your brain is jumping around from thought to thought to thought and your behavior is off because you keep jumping from activity to activity…well that disruptive behavior also can bring stress with it. One other problem is that often a stimulant has a negative effect on your appetite. As a result, Jeremy has been hovering around 60 pounds for the last 3-4 years. This past summer we took him off his ADD meds and as a result he gained about 5 pounds and at some points in the summer was actually solidly 65 pounds, but once we started back on the stimulants this fall…he lost 2-3 pounds. It sucks. One of the side effects of this drug is weight gain…and while some people might consider that a negative side effect….we believe that having a few extra pounds on his frame will help Jeremy to feel a bit better. To show you the difference….Our 1 year old is just over 30 pounds and our 4 year old is just at 50 pounds….Jeremy is 10 years old and about 62 pounds…..he just doesn’t weigh enough to be healthy!

The Vyvanse is a stimulant. If you’re not familiar with ADD/ADHD, the front part of your brain is basically the “Conductor” that tells the rest of your brain what to do….it needs the chemical dopamine to be able to function well and properly. For people without ADD/ADHD, your bodies produce the correct amount of dopamine and the “Conductor” keeps everything organized and running smoothly and as a result, you can go about your day without feeling frantic or stressed and without “jumping from thought to thought to thought“. If you don’t have enough dopamine, then your “Conductor” doesn’t function very well and depending on how much or how little dopamine you produce, you may be more or less organized or hyper or able to focus your thoughts. Having a stimulant kicks the “Conductor” into gear (much like having a morning coffee, also a stimulant) and Jeremy is able to settle down and to be able to focus a lot more.

It was tough to walk into the Mental Health Building and I’m coming to grips with the fact that a child of mine is in need of Mental Health Services to be able to be a successful person. There is so much negative stigma attached to Mental Health Issues and while I’m not out to crusade for Mental Health…I am definitely out to crusade and champion for my son….but the two are tied together, aren’t they?

There are so many people out there that need help. It shouldn’t be embarrassing to need help. The goal is to be able to live an amazing life and to be able to function well in society and if you require some help to be able to do that…..then so be it.

This is not to say that it’s easy to be walking this road, but I want the best for Jeremy and I will do whatever it takes to help him to be successful. I believe that we are on the right path…..a tough path, but the right path for him.

The alternative……to allow him to needlessly struggle for the rest of his life and end up feeling stupid or dumb or insecure – NOT ACCEPTABLE! This is not something we can “discipline” out of him. Yes, structure is good and learning about choices and their consequences is imperative. Learning to grow and learn from our mistakes the best we can, is so important…..but it would be so UNLOVING of me to not help Jeremy in the way that he needs help. I wouldn’t discipline my child if they were diabetic in the hopes the they would start producing insulin and so neither will I neglect the fact that his brain requires a little extra help to be able to function well.

And so here we are…..I’m eager to see how this new round of meds will help….I’m hoping that this might be the key to unlock this child of mine from the confines of his own brain. Time will tell but I’m hopeful!

Added to say: I just want to recognize those people out there who do love Jeremy unconditionally and who champion him and accept him regardless of his challenges……I am so grateful and thankful to you for accepting and loving my boy almost as much as I do. We couldn’t have survived these last 10 years without you.

The Extreme Update

This past summer was full of excitement for us.

Jeremy had been on the wait list for an Autism Screening. He definitely has signs that point to ADHD but there are a lot of social behaviors that seem to fit within the Autistic Spectrum.

We got the call early in August that they had actually made a spot for Jeremy to see a psychologist in the last two weeks of August. We were camping out past Hope, BC when our first appointment was scheduled and so on Wednesday August the 24th, Jon and Judah and I packed up and headed back into Vancouver to meet with the Doctor.

It was a 2 hour appointment where we talked about Jeremy and all the challenges that he faces. It was a pretty harsh meeting. Not from the Doctor, but from the standpoint that you are spending 2 hours talking about all the negative aspects of your child. Talking about the struggles and the ways that he is different….the ways that he is difficult….

And, the truth is…..This is a very tough road that we’ve been walking for the past 10 years of Jeremy’s life.

Honestly, I’m exhausted from dealing with it all.

We drove back to camp and felt so devastated. It was a tough meeting and in the meeting the Dr cautioned us that she didn’t really feel that Jeremy was Autistic, but that we would just have to wait until the next week when she met with Jeremy personally.

It was the LONGEST week that we’ve gone through in a while.

The Dr. met with Jeremy for an hour to assess him and then she met with us to discuss what she believed was the diagnosis.

She brought us in and assured us that Jeremy was AMAZING! He was SO CREATIVE and such a joy to have assessed and that he most definitely was not Autistic. He was too involved in our world and wanted too badly to be liked by people to be Autistic.

And then I fell apart…

See, I didn’t want him to be autistic, nor do I want him to have ADHD….but the truth is…

Jeremy’s brain functions differently than what is considered “Normal” and he is an extrememly difficult child to parent.

I love this little boy fiercely and I love his joy and his creativity. I love that he tries so hard to be a comedian and in spite of how often his jokes fall flat…that he just keeps trying. I love to see him drawing and creating. I love to see and hear about the things that his magnificent brain comes up with.

And I hate to see him struggle.

I believe that he is a very smart little boy and yet he struggles so badly with trying to get the information that is inside of him….out!

And, the bad things…..well, it’s tough.

And there is little to no help for a child who has ADHD.

The psychologist said that she believes that Jeremy has one of the most extreme cases of ADHD that she’s seen in her years of practice.

And then I cried……because what does that do…what does that help….how does that get us through these tough times?

She did recommend that we get an appointment with the ADHD Clinic at BC CHildren’s Hospital to have Jeremy’s meds properly adjusted.

She doesn’t feel that his meds are working the best way that they should to help him and that one of the Dr’s at the ADHD clinic would be able to help us better. Our family Dr. referred us to the ADHD Clinic “urgently” and Jon followed up with a phone call to the clinic. After some confusion and mix up, Jeremy has been scheduled to see one of the Dr’s at the ADHD Clinic this morning.

I feel equal parts of hopeless and hopeful.

I want to be able to get some help for Jeremy and yet 10 years is a long time to be fighting this battle alone. I know that we are not alone, but it feels like we’ve been fighting this alone.

I’m praying and hoping that’s today gives us a few more answers and some…..any…..help?!?

I’m sorry that I’m not explaining all of this very well, but in order to actually show how difficult this is…I’ve got to list out all of the areas that Jeremy struggles with and how difficult he is and because I live that EVERY DAY…it’s tough to “list it all out” for others to see. It’s tough to be confronted with a list that lays out all the negatives about your child. Even though that’s what we are going to do today…an it sucks.

So, if you think about us this morning….send up a prayer that we are able to get some help…help for Jer….help for us…just some help.

Exile Island – the Wish Kids Edition

Today was quite a day!

Our family took part in an event put on by the Children’s Wish Foundation.

It was a “Survivor” type event, called Exile Island, that took place at the Vancouver Art Gallery, and it was AMAZING!

Every “Wish” child was partnered with a “Sponsor” who’s goal was to raise money for the Children’s Wish Foundation. The day was filled with activities and challenges that the “Wish” Child & Family and “Sponsor” worked together on to complete and possible win!

Our kids were all excited about today, mostly because they got to skip school to be apart of today’s activities. I think that they would have been more excited about the day had they known exactly how fun this event was going to be. We showed up at 11:30am and registered as a “Wish Family”.

Registering

After registering, we headed over to the lunch table to snag a few DELICIOUS sandwiches that were made by Marmalady Catering! AMAZING!

The Opening Ceremony was hosted by Tamara Taggart who is absolutely lovely and after it was finished, the events began.

Each team was responsible to make a flag to represent themselves and seeing as we are headed out on a Caribbean Cruise to Disney’s Castaway Cay……the kids decided that we should be called “the Castaways”

Our Team Flag – The Castaway’s

The Wish Kids were all introduced and then called up to bang the official GONG! How fun is that?

Just after Geli rang the GONG!

Our Sponsor was the lovely, Andrea Shaw of the TwentyTen Group.

It was an absolute pleasure to be partnered with her. She was kind and loving and so SO sweet with our entire family. She made today so much fun for all of our family and we are so grateful for all she has done in raising money for the Children’s Wish Foundation. It’s hard to fully express the gratitude that I feel and so a simple heartfelt Thank You will have to suffice.

I’m realizing now that I don’t have a picture of our family and Andrea and I’m hoping that I can get a hold of one because I know that there was one taken by the event photographer……now to figure out how to get my hands on it?!?

This was such a great event and our WHOLE family had a great time…from the adults all the way down to the youngest member of our family.

Judah…..although I think he was probably more excited about the balloon rather than the day’s activities.

After one of the challenges, the team was supposed to decorate a t-shirt and here was our team’s contribution.

Here is photographic proof that I was actually AT this event. I spent a good part of the day holding Judah and corralling Siah but I stopped for a quick moment for a shot of Siah and myself.

One of the events was a Scavenger Hunt and as part of it, you needed to dig through this kiddie pool full of crumpled newspaper to find certain items….

During the Scavenger Hunt

Siah had been eyeing the pool up for most of the day. He was SO EXCITED when the event was over and the pool had been dragged off to the side and the had the opportunity to jump in for himself…..

And SERIOUSLY…..what event would be complete without a Dance Party…

Jeremy has some MOVES! He’s pretty cute, if I do say so myself!

The little boys were up and down the stairs of the Vancouver Art Gallery a million times and I got so sick of yelling at Siah to get down off the Lions….apparently they are a HUGE climbing attraction for little kids.

The Last challenge of the Day was a Food Challenge….where the teams were required to whip up some Whipped Cream…..BY HAND!

and the Andrea, our sponsor, had to find gummy worms in the bottom of the pie….without the use of her hands. YUCK!

She is such a trooper….

It was a LONG, FUN-FILLED, Action Packed, AMAZING Day. It was a day that we will not soon forget. Everyone is so completely worn out from the excitement of the day, but in a good way….

A HUGE THANK YOU to Children’s Wish for putting on the Exile Island Event and for helping to make Wishes come true. And another HUGE THANK YOU to ANDREA for all her hard work and support.

It was so touching to be apart of this event and to see all the special, inspiring Wish Children. To know first hand the impact that getting a wish makes, is huge! To see all these people working together to make these wishes a reality is something that I will never forget.

If you are interested, you can go to their website and donate now!

To see the Wish Kids, to hear their stories, to witness their challenges and to see that in spite of any hardships that they go through that their spirits are so very VERY strong….well, it’s all so very VERY touching and so very rewarding to be apart of making these wishes come true!

We are SO looking forward to going on Angelica’s Wish Trip at the end of this month. After the event today we were given a huge box full of stuff for our cruise…

But, I think that this post is long enough and so I’ll post about the Wish Trip Box in another post.

I apologize for the crappy iPhone photos, but with my hands full this afternoon, it was this or nothing and I preferred this to Nothing! If you are interested in seeing the whole set from today, then you can click here.

Day Two……and a half.

If the rash on Geli’s back and thigh showed up on Sunday night then we are on day 2 and a half of this stupid cycle.

After she was admitted on Monday they started her on an anti-viral mediciation that is used to treat Shingles. Typically if a child gets a virus there is not too much that they can do other than just let the virus run it’s course, but with this particular virus….the one responsible for Chicken Pox….they can give a course of the drug, Acyclovir. Right now she is on an IV medicine, but can switch to an oral med if her body heals up quickly.

Doing Homework after school on Monday

And that is what they’ve done. She in on a 7 day treatment plan and basically they are waiting for the rash to blister up and then start to crust over…..disgusting, eh? But, that is what happens and so that is what we are looking forward to.

The rash started out not too badly on Sunday night and Monday but by Tuesday morning it was worse. One good thing though….the actual “blisters” within the rash were really tiny. It’s pretty nasty looking, but I think that she is starting to get better now. She has not had too much pain. On Sunday night and Monday she said that there was pain where the rash was at about a level 2 out of 10 and that there were times where it would be “shooting pain” and that shooting pain was at about a 4 out of 10. The worst pain was when someone would touch the rash and in order to get a sample to “test” they had to do a scraping….yah and the first sample didn’t have enough to get a good test and so they had to do it a second time. Sucks, eh?

Short Nap in the Stroller

Yesterday she said that it maybe hurt a little bit more, but for the most part it was okay. This morning it doesn’t really hurt at all and when the resident came in to see Geli, she was pleased to see that some of the rash has already started to scab over which is earlier than they would have expected.

He just crashed on Monday night

Thank you so much for your prayers and encouragement and support. It means so much to us.

Here are a few things to pray about….

We’d love to see Geli (and Jon) be healthy enough to come home by the weekend.
We are still praying the little boys don’t get Chicken Pox.
We are hoping that Geli will be able to catch up on all the school work that she’s missing this week without feeling overwhelmed.

So Proud that he climbed up on the stool by himself

As much as this is frustrating, I’m trying to look at the positive side of things. While in the hospital, Geli has been able to have the Physio Therapists come in and look at her and work with her and they will continue to do so every day that she is in and once she leaves, they will be able to be in contact with a Physio Therapist out here and to be able to communicate with them exactly what Geli needs as most of her issues are as a result of the chemotherapy. Some of the drugs actually damage the nerves and it can take some time before the nerves heal. Some of the drugs cause muscle damage and that can also take a while before the toxicity flushes out of her and her muscles are able to recover and rebuild. And on top of that there is muscle atrophy, just from lack of use…..

It actually fits in the garage now! Thanks, Momma!

This is such a tough road to walk out but at least now we have a “sort of” “somewhat” plan moving forward. On top of that Geli was able to hear that all this physical crap is “normal” for someone who has gone through what she’s been through and that it will take her probably 6 months to recover from the damage that the chemo has wreaked on her system. It’s so good to hear that this is all a part of the journey.

I mean, it’s horrifying to go through this and yet there is a certain level of comfort in knowing that this is part of the process. It’s a horrible HORRIBLE process, but she will come through it.

4 Boxes and 2 bags of recycling after the big clean up

And so we carry on. The kids at home are doing okay. I’m doing okay. I’m tired. Even more tired than usual, but possibly less tired than earlier this year and so that’s a good thing.

Monday was a tough day for me and I’m so thankful that my Momma came over and spent the day with me and then she slept over and was around for the morning on Tuesday. She helped me to get my garage cleaned out from all the camping crap that we just “dumped” in our garage in our efforts to unpack the camper at warp speed at 10pm the night we came home.

Signs that your child is a climber.

And now I can actually park our van in there which is a HUGE HELP as we had been parking it out on the road outside our townhouse complex. Now I don’t have to schlepp the diaper bags and kids and other assorted crap out to the van when I want to leave….I can just huck all that stuff in from the comfort our our own garage. YAH!!!

I still want to share about our time away up at the lake and also about Jeremy’s official diagnosis. Lets just say that the last half of the summer was not uneventful.

Down time for me, before bed

Currently, the baby is sleeping and has been sleeping for just over an hour. I am shocked and amazed and and fully expecting him to wake up any minute as he NEVER sleeps this long. Mind you when you half wake up and won’t settle from 11:45pm until 12:20am and then are up again at 2am and at 4 am and at 6am and then up for the day at 7am……you’d think that you might be slightly tired, no???

Well, I’ve got to get going and the battery on my laptop is about dead, so with that….I’m off.

Oh, one more thing…Geli reads the blogs and comments when she’s in the hospital so if you have a quick hello or a cute joke or a funny story, I know that she’d appreciate it. She’s a little bored and she’s not allowed to leave her room unless she wears a mask and heads right outside. They’ve got her in isolation to protect any other kids with compromised immune systems……and isolation….is not as cool as you might think it could be.

Thanks again….YOU ARE AMAZING and WE APPRECIATE YOU!

Hospital Update

Hi there from BC Children’s Hospital

Geli Lunch — Geli with one of her favorite hospital lunches

Yesterday, Angelica tested positive for the virus that is responsible for shingles, present in a rash on her side. In other words, she is going through an episode of shingles. The same virus is also responsible for chicken pox, so there is a chance that the two younger boys that we have at home may have been exposed to chicken pox. This presents a problem because we are supposed to be going on a trip, leaving on September 30th, and the incubation period for chicken pox is 10-21 days which means that there is an outside chance that the boys could get the chicken pox right before we leave or even on the boat.

As far as Angelica is doing, she is confined to strict isolation until the shingles rash ‘crusts over’. This can take anywhere from 3-5 days. If Angelica were feeling sick, then she would just want to sit and rest, but she is physically feeling fine. The rash doesn’t even really feel like anything for the most part, except if you poke it… Add to that, that she wants to get back into shape and participate in team sports in school and have strength for the trip and she doesn’t want to sit still. I am spending the day today trying to find things to do that will not make the room feel like a prison. Angelica asked the doc today for a stationary bike. I have also asked for physiotherapy to come to the room and asses her phyisical condition and give her some strengthening and stretching exercises that she can do. Hopefully between all of this, the week will go by quickly and she will even be stronger when she leaves.

Thanks to everyone for your thoughts and prayers, and please pray that the boys do not have chicken pox at all.

~
Jon

Not as Planned

Today is not going exactly as planned.

Jon has just taken Angelica into BC Children’s Hospital (as of 9:30am, Monday morning.)

This has left me a bit shocked and I am really praying that Xandra and Jeremy handle the news better than I have. (I’ve already been crying and angry and upset and shocked and so confused and frustrated and really REALLY PISSED!)

Last night around 8pm Angelica came down to the kitchen to show me a rash that was in a stripe and started at the middle of her back and wrapped around hip and down onto her thigh. It was quite angry looking and some of the welts…..well, they weren’t weeping, but they looked close to it….

We called into the hospital and told them that we’d given her benadryl and put some hydrocortisone on the rash and they said that this didn’t sound like a complication of her chemo or the meds she was on and that we’d done the right thing and that was it.

So we sent her to bed.

Things have been a tough recently with Angelica because her body is so fragile and “broken down” from the past year of treatment. Her muscles have atrophied some and she has grown so on top of weaker smaller muscles they are also stretched and she hurts all the time. She walks like an old lady and…..and….well, she hates it all. She hates being in pain. She hates that shes not strong enough to just do “normal” things. And to top it all off….our insurance doesn’t cover her going to see a kinesiologist – which would be a way better treatment for her than Physiotherapy. It’s all so frustrating….

Yesterday we had a huge conversation with her (that involved a lot of tears) about her BELIEVING that she will get better. It has felt like she’s unsure about whether or not she’ll get better and be able to just be normal and strong when it’s been so long that she’s been hurting and feeling sick and weak and unable to just do the things that you and I take for granted.

She finally got to the place where she could say, with some conviction, that she believes that she will get better, get stronger, get healthier……

And then this rash shows up….

And then we have to call the school and have her paged to the office to be picked up…

And when she gets into the car, she has a bag packed for a possible extended hospital stay…

And this is all happening on the first “normal” day of her grade 9 school year….

And this is all happening after she stands and believes that she will get better…..

And this is all happening 2 weeks before we are supposed to leave for Angelica’s “Wish trip”….

And I’m a bit in shock about it all….

I want to believe that it’s going to be nothing and we’ll see them home in a few hours, but I’m scared to hope for the best and to be let down.

Jon and I had planned to spend a “down day” today on his day off. Cleaning up our grarage (which is still loaded with crap from our camping trip) and just spending some much needed time together….and instead we are gearing up for Anti-Viral’s or Antibiotics and Extended Hospital Stays or Who knows…..

Please pray.

Pray that Angelica will he healthy. That the two little boys will not get chicken pox from this. That Jon and Geli will be able to come home. That this won’t affect her Wish Trip. Just please pray!

I can do this…I have to do this. But I really don’t want to.

It sucks.

It sucks for her.
It sucks for me.
It sucks for all of us.

It just sucks!

Routine & Advice

Well, today was the first full day of school for our older 3. Angelica and Alexandra are in High School and Jeremy is in Elementary School in Grade 6. Siah and Judah are at home with me.

It seems odd to me that I’ve got such a HUGE spread from my 1 year old to my oldest in Grade 9; but that is what happens when you’ve got a 7 year spread in between the 3rd and 4th child.

I am SO looking forward to getting back into a routine of some sort. There is something just so comforting about knowing what to expect and when to expect it. The past 14 months have been anything but routine. While I normally look forward to September and the newness and routine that it brings, I find that this year, more than ever before, I am craving the comfort that routine brings.

When the older kids headed off the school this morning, the two littles and I headed out to the grocery store. It’s never “fun” taking the kids shopping, and this morning was no better; but it was different. Different because this is a NEW SEASON…..and I have a NEW PERSPECTIVE. It’s amazing how a life threatening disease will impact you both negatively and positively.

I’m looking forward to doing things with the boys. I’m looking forward to establishing new routines and to the give and take of learning. Them learning how to behave in different situations and places; and me learning to read them and to know when and where to take them and at which times…..it’s a whole season of learning for everyone.

The shopping trip today would have been infinitely better if Judah would just stop screaming. He has this unbelievably ear piercing shriek and he kept screaming over and over and over. The people around us would put their fingers in their ears, I’m assuming to stop the ringing…..it’s that bad! And I’m not sure what to do? How do you tell a baby to stop screaming? My current method is to firmly tell him “no” and to gently cover his mouth to stop the screaming. I’m not interested in smacking or flicking and he doesn’t take a soother. He’s only 14 months old and……..? Yah? Anyone? Anything? He’s been doing it for a while but it has never bothered me before; but then I’ve spent the past year mostly at home and so, I didn’t really think anything of it.

I think he learned it from his older brothers. When they “disagree” on something….there tends to be a bit of shrieking; and while I can talk to Jeremy and Josiah, or put them on time out, or send them to their rooms…..it’s a little different for a baby, no?

So, what says you? Any advice on the shrieking? And what do you think about routines?

Beginnings

This fall is really feeling like a new beginning for me this year…for our whole family.

We had the most amazing time away. I’m not gonna lie, a camping trip with our family of seven and then add in a friend…..and it’s not really a “vacation” for the mom but still it was so nice to get away. Away from grouchy neighbors, away from the telephone and internet and electronics of all kind, away from a fast paced lifestyle, away from the housecleaning and so much more…..

We got up and ate breakfast and sat by the fire, then we went swimming. Then we sat around or chased the baby and then went swimming again. Ate lunch, swam some more, read some books, went swimming again. Ate some more and then swam some more….Made and ate dinner, cleaned up from dinner went swimming again, got the kids ready for bed, sat by the fire, watched the stars, went to bed and then started all again the next day.

All in all, it was pretty amazing.

We came home and the “clean up” after camping….well, it was HORRENDOUS and it’s taken us over a week and a lot of nagging on my part and our house is finally livable but the garage….well, let’s just say that we cannot park in there just yet. I’m praying that by this time next week that we’ll be able to park our van in the garage.

In all the clean up, I even rearranged our house back to it’s original place. When Geli got sick last year and Judah was born, I rearranged our house so that I could easily watch the kids in the kitchen while I was nursing. Basically I flipped the living room and dining room. With Jon in the hospital so much, it was just easier for me to be able to see into the kitchen to see what all the monkey’s were doing and that’s not possible when the living room is in it’s normal place.

I was so surprised how changing things back to their original place really made a difference in my mind. It really felt like things were getting back to normal……well, it’s more like redefining life. And even in the middle of this “new beginning”, we are still walking through Angelica’s cancer treatment.

Angelica is still going through chemo.

She has a monthly appointment at the hospital to get a shot of Vincristine and Methotrexate into her spinal fluid.
On Monday’s she takes 13 pills of Methotrexate by mouth.
Once a month she has to take a steroid for five days.
She also has a daily dose of chemo.

She does this until October 2012!

So, although we are in a less intensive phase, she is still actively going through chemotherapy.

Angelica is working towards recovering from this past year. She has definitely lost some muscle and is not as strong as she was before. But she is trying so hard and we are so proud of how hard she is working to overcome all the challenges that she has come up against.

This is going to be a good year. I choose to believe that.

I’m looking forward to see what this year brings.

On Vacation…

We’ve been going to Ross Lake since the year we got married (that makes it 16 years) and we’ve only missed a few years. Last year we did not go, cause we were in the hospital all summer. What a blessing it is to be able to take Angelica (and the rest of our healthy children) up to the lake this year and have her health good enough that we can be out of cell phone range, because we don’t need direct access to the hospital right now.

It seems like we haven’t been very plugged in to work or school or other things and taking a vacation from all that right now is somehow wrong, but we have been living in a pressure cooker for the last year and a de-stress is very much in order… so look for us again (with fresh pictures from our wonderful Ross Lake) after August 29th.

Please Tell: What does your family do for vacations? What do you do to de-stress? Please share a vacation or camping story here for us to read when we get back…

We Love You All.

~
Jon