Life – Page 18 – xangelle.com

2 Stitches

As if we didn’t have enough drama in our lives right now, Siah decided to shake things up a little last night.

Jon, Jeremy and Siah were down in the basement playing a video game. Siah was sitting on the arm rest of our futon and he unbalanced himself and fell forward hitting his head on the corner of a wooden toy box.

Breakfast

Mom, the girls, Judah and I were up in the kitchen and heard the thunk. It was that loud. Then we heard Jon yell and then we heard Siah crying and it was “one of those cries.”

I raced downstairs and met Jon at the bottom of the stairs. He handed Siah off to me and there was blood everywhere. I could see that his head was split open in between his eyes. We came up stairs and got a rag to try to stop the blood. It was apparent that he’s need stitches.

First Bite

We hoped that we could make it to the local clinic that did Jeremy’s stitches as we’ve talked with them about our challenges of dealing with germs and sickness due to Angelica’s suppressed immune system, BUT….it was 7:30pm and they were closed at 8pm and they were already over booked for the day and were not even answering their phone.

And so Jon headed to the ER.

The plan was for Jon to wear a mask into the ER and explain the situation and see how they could work with us to get Siah the care that he needed while attempting to keep us as germ free as possible.

The staff at Langley Hospital were amazing.

Geli’s Delicious Cinnamon Buns

They didn’t have any open rooms at the time, but they planned to get a room emptied and clean out and to bring Jon and Siah in and straight back to the closed room as soon as possible. They gave Jon a small mask for Siah to wear in and out and in the waiting time, they stayed in the van to minimize the possibility of picking anything up from other ill people.

They waited in the van and the triage nurse came out to the van to assess Siah and yup….he needed stitches.

It took a few hours, and in the mean time, Siah fell asleep.

See Food

When the room was finally ready, Jon carried the sleeping Siah in. He said that they got quite a few looks, as he’d been in and out with his mask on and now they were carrying a limp child in with a mask on….can you imagine that others in the waiting room must have been wondering what was wrong with this child that they had to wear masks????

Jon tried to wake Siah up to explain what was about to happen, but he had tired himself out so badly with his initial screaming when it happened that he was NOT waking up. He was in that drowsy state where you’re not really awake but not really asleep. They finally wrapped him like a burrito to keep him from being able to move his arms and the Dr checked to see that Jon was okay with what was going to happen and once he was sure that Jon wasn’t going to flip out….they started.

They had already put on a fast acting numbing cream and they started injecting the freezing and that’s when Siah woke up for real. So in his mind, probably, he went to sleep and was woken up to some dude poking his head with a needle. AWESOME! Jon said he screamed until he wasn’t breathing. Brutal! The Doctor only put in two stitches because he figured that was about all that Siah could handle and even though he was being quick, it was still pretty traumatic.

He told Jon that the cut was extremely straight and that it should heal amazingly because it was such a precise cut.

2 Stitches

They masked up again and came home. Siah settled down pretty quickly once Jon was able to hold him and was almost asleep by the time they reached the van.

They got home before 11pm….not bad considering the waits in ER’s now a days.

He went to bed right away and slept through until 6am when he crawled into bed with us.

This morning he seems to be doing okay and so we are just gonna take it easy today. Geli’s doing pretty good this morning too. We were attempting to adjust her meds schedule around so that we were not having to wake up at 3am to give her a dose, but that meant that she might be a little barfy this morning. She did feel a bit off and dry heaved for about 45 minutes off and on until the meds finally kicked in. Her and Siah are back downstairs in the basement this morning. She is teaching Josiah how to play the original NES Nintendo Super Mario Brother’s game. He’s thrilled and she’s distracted and it’s good.

This is now the 4th of our 5 kids that have gotten stitches in their head…..when she was about 8 years old, Geli wacked her head open on a floor heater and needed 3 stitches. When Xani was about 10, her cousin went all vmapire on her and tried to take a bite out her head while they were jumping on a trampoline and she needed 3 stitches. A few weeks ago, Jeremy got 3 stitches in his chin and now Josiah has had 2 stitches in between his eyes…..GAH!

I’m really hoping and praying that Judah stays safe and protected.

Do you have any cool stories about “that time you got stitches” or your kids……Please share!

Silence Filled With Thankfulness

I’m sitting here in the silence of my home. The baby is squirming in his sleep and Angelica is sleeping on the couch across the room from me.

My sister, Michelle, took Xandra camping. My sister, Debbie, took Jeremy camping, and my parents took Siah camping. Yes, they are all camping together. It’s hard being here and not with them…but it is what it is and it’s not forever….again, this is just a season and we will go camping again, hopefully next year!

I should be doing laundry and cleaning the bathrooms and vacuuming the upstairs hall and bedrooms, and cleaning the boys room and tidying the kitchen, but I’m not…..I’m just sitting.

Sometimes, you just have to sit and breathe….and I need to do that right now.

Often when I do slow down long enough to think about all of this, I’m struck by how blessed we have been. I think of how much love we’ve been shown by so many. It’s truly awe inspiring.

I’m so thankful to everyone who has helped us and given to us in any measure. We are so grateful to everyone who has in someway shared this “load” with us. There are times that we feel crushed (but not destroyed) under the weight of all of this and when we shift our focus off of how difficult this all is, it’s easier to see that there are so many standing around with us carrying a piece of this or even propping us up. Every meal, every gift card, every package, every gift, every comment, every prayer, every e-mail or Facebook message, every donation, every little thing no matter how big or how small, has truly impacted us.

You are all so kind, thoughtful and generous. Your love comes from near and far and wraps around us and helps to carry us through….and in the silence of today…..I think about you all and I’m so thankful.

Rice Balls just for fun

Jon and Geli are at BC Children’s today. We have no idea if they’ll be coming home today or not. She is still vomiting and still has a headache. She is scheduled for a lumbar puncture and one dose of chemo and then……..ya, I have no clue.

She ate some yesterday, but she’s obviously not well. I really hate seeing her like she is. It’s pretty brutal.

Yesterday while Geli and Judah slept, I cooked.

I bought this recipe book on the advice of my naturopathic doctor and it’s probably one of my favorite recipe books ever.

The author, Cynthia Lair, has her own Amazon page where you can read blog posts and you can even subscribe to her You Tube Channel….where she hosts her cooking show – Cookus Interruptus.

We have found some of our all time family favorite meals and snacks from this book and yesterday, Josiah and I decided to try making the rice balls.

I know it sounds funny and honestly, its as simple as it sounds, but totally healthy and DELICIOUS. Even better, Siah had a ton of fun helping and then eating them.

Here you can see what’s involved…

I prepared the sesame salt in advance by toasting sesame seeds and then grinding them with sea salt.

I also steamed the rice which is a blend of brown and sweet rice and let it cool to room temperature.

That’s is the total of the ingredients involved. Rice, sesame seeds and sea salt. AWESOME!

One the rice was cooled to room temperature we started.

You need a bowl of water to keep your hands moist so that the rice won’t stick to them. You wet your hands and take a small ball sized amount of rice and roll and press it into a ball and then you roll it in the sesame salt…

It’s pretty much that simple.

They are ready to eat right away. Here Siah shows that you can dip them in soy sauce. We use Braggs Aminos. So SO delicious!

You can see by looking at his shirt that we really jump into cooking….like totally and completely….or maybe he just had a dirty shirt from lunch!

Mmmmmmm! They are so delicious.

These would be fabulous for school lunches and they last for 5 days in a sealed container in the fridge.

We’ll definitely be making more of these in the future.

I’d totally recommend this recipe book to anyone. It has tons of delicious whole foods recipes and they are easy to prepare.

Exhaustion….

is having your 3 year old son come to bed at 1am only one short hour after you’ve gone to sleep and having him awake and thrashing around in bed when at 2am you hear your daughter barfing. Then to have your husband fully wake you with the knowledge that your daughter has a fever of 38.1F.

Any fever is treated as serious and severe and warrants an immediate trip to the ER at Children’s Hospital.

The magic number that earns you an immediate trip to the hospital is 38.5F and so we called in to the oncologist on call to see what they’d like us to do…seeing as she wasn’t far off. Just so you know, her normal temp hovers between 36.4 and 36.9. We have to take her temperature daily in the morning and in the evening because when your counts are low, you don’t typically present with normal symptoms of infection…you just get a fever!

So when we talked with the oncologist on call, they said to wait half an hour and take her temp again to see where it was going….At this point I was up and Jon was up, Geli was up and Siah was up….Geli was finishing packing her bag as we were certain that she was heading in for a 2+ week stint of an antibiotics run. When there is a bacterial infection that runs rampant, she gets put on general IV antibiotics for a few days while they culture for the exact strain of bacteria and once they figure that out, they give her the correct antibiotics and then they take her blood every day looking for a test to come back negative for the bacteria. Once they get the negative test, then it’s two weeks on the antibiotics and then she can come home……lovely, eh?

This is what we were preparing ourselves for at 2am on a Wednesday morning. Jon was getting a last minute snuggle in with Siah. Geli had a bag packed and was laying on the couch and I was frantically cleaning the kitchen…..all the while trying to figure out how I was going to “do” everything especially when there was no way that Siah was going to sleep anytime soon, and honestly neither was I. Although I could go and lay down, I seriously doubted that I’d be able to sleep until I heard an update from Jon.

Finally, the half hour was up and her temp had gone from 38.1 to a 38.4 and so Jon rang to let them know they were on their way and that the temp was creeping up and they headed in.

I brought Siah back upstairs to my room and put on a movie for him on my laptop. He watched Enchanted, while I lay there waiting for an update. In the early morning hours time seems to stand still, but Jon finally messaged me and really had no update other than they were there.

He kept messaging me with what little information that he had and the end result was that things looked kind sketchy because she had a fever while already being on antibiotics and who knows what that meant and yet her counts weren’t indicating a bacterial infection and they weren’t admitting her, but they wanted her to say until the Oncology Clinic could assess her and it didn’t open until 8am so they were gonna try to rest and hang around until then. Siah’s movie finished after 5am sometime and I convinced him to fall sleep.

I finally fell lightly asleep around 6ish and then Judah woke at 7:30am to eat. Siah woke up for good just after 8am and I’d not heard anything regarding Geli yet.

Jon finally messaged me that they were giving her a IV dose of a big antibiotic and sending her home thinking she was dealing with something viral and that she could recover just as well at home as at the hospital…. She does have to come in tomorrow morning for some follow up blood work and another dose of antibiotics.

It was nice to have them come home. We have no idea where she could have picked this virus up, but this does speak to her compromised immune system. We feel fine, but somewhere, somehow she’s picked up something. Fortunately, her counts are just on the high-ish side of low, enough so, that she can be at home. Were her counts lower, that would not be an option.

But, this is one of the reasons why we must be so careful right now….Her system is just so fragile.

She’s been sleeping on the couch since 10:30-ish about half an hour after they got home. Jon took Siah upstairs and convinced him to fall asleep with much wailing and tears, but in spite of his exhaustion….Jon couldn’t sleep. Sucks!

I’m surprised that it’s already 2pm….I’m hoping that the rest of the day flies by until the moment I can crawl into my bed and that there are no more hiccups and especially that Geli starts to feel better so SO soon!

Summertime Fun

This summer has been unusual, abnormal or atypical, to say the least!

We are trying to keep things ~~as normal~~ moving along in a fun and relaxed way while at the same time taking the necessary precautions to keep things as safe and healthy as possible.

Knowing that we are heading into a period of time where Geli’s infection fighting ability is at a low (to non-existent) point, I was trying to figure out something fun that we could do to celebrate the long weekend. We need to be away from gatherings and crowds, and so that make everything a little more difficult and limits some of our regular “go to” family activities.

I figured that we could have a picnic. The kids ALWAYS want to pack a picnic, a blanket and some games and spend an afternoon together, and unknown to the children – that is what we planned.

When we woke up that morning, the weather looked yucky and worse, IT WAS FREEZING!

And so my brain went into overdrive to try to figure out how we could still do something fun, but indoors…..

We have a large shag rug that I figured would be perfect for a little indoor mini Bocce Ball Game. We had a small whiffle ball for the target and 3 pairs of hard rubber bouncy balls in blue, yellow and orange. Then I was going to set up bowling with a bunch of empty water bottles, and a tennis ball. Our hallway is the perfect spot for that. Then I figured that we could pack our lunch basket and put a blanket on the living room floor and I was even thinking of different ways to make smores either in the oven or over the bar-b-que.

I figured that even if the weather didn’t co-operate that we could still have a great and fun adventure of a day.

Fortunately……by lunch time, it was warm and the sun was trying desperately to peer through the hazy clouds. So, we packed everything up, told the kids that we were headed to Derby Reach, got in the van and headed off.

We got there and headed out onto the grassy field to lay our blankets down, and sat down and ate.

We get KFC about once a year and that’s enough to remind us that it’s SO DISGUSTING and then it takes us about a year to forget just how gross it really is and then we order it again….

Nana and Papa came down to join us and then it felt like a party and not just a picnic…

Jon sat and held Judah in the shade….

And Judah was fine for a while but very quickly decided that he didn’t really want to just sit and he informed us of that quite loudly….

Geli, Xani, Nana and myself decided to play a rousing game of rummy…

Jeremy told Papa all about his creations and inventions and tried to talk Papa into building an electric chair on a track that would go from the top of our house all the way down to the basement for Judah to ride on so that it would be easy for him to get around…..

Papa seemed quite amused by Jeremy’s ideas……

but then HONESTLY…who isn’t amused by Jer’s ideas…my sweet, SWEET boy!

Judah finally chilled out when we laid him down on the blanket….I think he liked looking up at the giant tree that we were sitting under.

We played about 10 rounds of rummy, but Xani got bored and dropped out of the game…..

Nana had a good attitude throughout the whole game even though, I whooped her’s and Geli’s butts…..

Isn’t she pretty?

We found this little guy crawling on our blanket…..cute little pink lady bug!

Papa took Jeremy and Xani for an adventure walk through the trails and Jon took Siah down to throw rocks into the water. Siah managed to get soaking wet, and then in true Siah like fashion…..he came back to where we were sitting and a HUGE mole hill sucked him directly into it’s core…

He just threw himself face first directly into a pile of dirt!

I could complain, but it kept him entertained…..

and captivated…..

for ever…..

I think that this was the best part of the whole outing as far as he was concerned. And then……oh, AND THEN..

Then he decided that he was not quite dirty enough…

Oh baby! I think he just wanted another dunk in the river….which we gladly obliged and then we packed up and went home……The End!

Actually, it was the end of that particular adventure but little did we know that it wasn’t the end of the day….there was another exciting adventure waiting for us, but I’ll save that for another post……..

It was a great day and we have some great memories of a fun and special day.

Edited to say: You can click here to see the whole set from our Derby Reach Adventure

It’s “THE CALM” …………

I don’t want there to be any storm following this calm period and so we’re just stopping with, “THE CALM!”

This past week has been – shall I dare to day it – FABULOUS….you know as far as chemo and side effects and Lumbar Punctures and Full Body Bone Scans because of legs that refuse to un-gimp themselves despite physio and chiro and massage and…

Well, We’ve got one full complete week under our belts and Angelica is doing AMAZING.

Honestly, I think that she is feeling better than she’s felt in months. It’s awesome to hear her bossing around and bagging at her brothers and sister. It sounds so “normal”. She was so quiet and down and tired and….well, when I look back, I think she had been sick for a while. So not cool! She has life in her eyes, a spark in her step and… an edge to her voice (hee hee) that has been so lacking for a long time.

The chemo make her feel a little “off” but over all she’s doing okay. We are trying some different options for her with her oral meds and it seems like it’s helping with feeling yucky in the mornings.

Her leg has finally started playing nice and is stretching out nicely and not hurting her any more, and the bone scan showed that she has a fabulously healthy teenage skeleton with no issues.

She is headed into Children’s early tomorrow for another Lumbar Puncture and a IV shot of Chemo. They are going to take her bloodwork and we should know where her levels are at that point. They are expecting her levels to all have dropped or to be dropping and to be at their lowest by the end of this week. This can be a little scary or nerve wracking as we feel a bit on high alert for anything “going wrong”. She could get a fever and end up in the hospital for 2 weeks on a run of antibiotics and that would TOTALLY SUCK!

We are asking for prayer over this time that Geli would remain infection free and that things would just carry along smoothly and that we’d be able to continue along with the treatment plan with no side effects and no delay of treatment. If her counts go too low, they have to delay the treatment until her counts come up….

She is also scheduled to go and pick up her wig this week, and that should be so much fun!

I’m feeling….well, I’m feeling all over the place.

I’m trying to hard to stay on top of things….the house, the meals, the laundry, the kids….and I feel like if I don’t keep going, that I’ll get behind and everything will fall apart or become completely overwhelming. I feel like I’m going in super mega overdrive from the moment I get up until the moment I get into bed and even then….all I can think of is everything I didn’t get accomplished that is piling up on top of everything else on the list for the next day.

I also find that emotionally, mentally and physically, I have nothing in reserve and so it takes very little to deplete whatever energy I had and then I crash.

For someone who thinks she can “do it all” this is so SO frustrating. I feel so upset and angry at myself. I know that our child was diagnosed with cancer and then I spent 2 weeks living in a hospital with little to no sleep before I had a baby and then went home to care for 4 kids for a week, and then headed back to the hospital for another week with a newborn and that I was riding a wicked WICKED emotional roller coaster during all this time, but to see and feel how “off” I am – it’s so discouraging.

Geli went and visited my mom (across the street) on Saturday and so we took the opportunity to run a few errands. I went into the first store while everyone else waited in the car and by the time I came out – 15 mins later – I was DONE! Honestly, Emotionally and Physically, I was spent and yet……..We HAD to go grocery shopping and we also needed to hit another store on our way home.

I know that the easiest thing, would be to just say….well, we’ll do it later. But, honestly, there is so little “available” time with Jon or the van and by the time the evening rolls around…I’m so spent from the day…I’m not doing anything except praying everyone goes down early so I can too.

So, I powered through, got home and lost it. AWESOME!

But, we have groceries, and the rest of the week planned out and taken care of and so at least that’s one thing that I can scratch off the list.

Honestly, things are so “off” around here and its showing in everyone. Everyone is off just a bit. Xani is melting down regularly. Josiah is testing every boundary and doing so in either a whine or a scream. Jeremy is fixated on the computer to the detriment of everything else in life. Geli is addicted to solitaire on her iTouch. Jon is short and testy with everyone and I’m exhausted and so close to falling apart. It’s brutal!

This is so far off of how I “see” my family being. This is so far off of everything that I’ve worked for for years and yet…..right now we are just coping…and barely doing that.

I’m scared. I’m scared that Geli will end up in the hospital for another big chunk of time and I’m not sure that I could handle all of that very well. Obviously, I get no choice…I’d have to handle it and yet, it’s the “very well” part that I’m concerned about.

This is difficult.

I’ve sat down tonight purposing to write something…anything (as it’s been a few days) and yet I have nothing concise or well thought out to share. I feel like I’m just blathering on and on and on with no clear point to make and I don’t want to come across whining and yet…this is hard.

This is brutal tough road to walk and yet, walk it, we must!

It feels like we are just scraping enough energy together to just be able to put one foot in front of the other. There are a million e-mails that we want to respond to. Phone calls that need to be returned. People to be connected with……and no time to do it in. Or even if there is a smidgen of time, there is little to no energy to do it with.

We hope that no one takes it personally, if we don’t respond in any sort of a timely manner.

There are only so many things that we can cram into one day and some days………well, lets just say that most days we feel like we are sinking and a good day feels like we’ve treaded water all day and just managed to hold steady.

I’m trying to believe that things are getting easier and I think they are. Slowly, but surely…I think they are. I hope?!?

One day! One hour! One minute! One breath!……..

One too many things to juggle

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.

Jon

Round 2, Day 1

Jon took Geli into BC Children’s this morning.

They left before I had even crawled outta bed. They had an 8am appointment and so they left here at 6:40am. I was awake when they came in to kiss me good bye, but was still a little groggy. I had both Judah and Josiah in bed with me at that point. Our morning sleep in was cut short when Siah rolled over and slammed his head into the corner of Jon’s bedside table…..what a morning wake up call. Man!

I do know that Geli was the first appointment, and that she had the Lumbar Puncture, and then received her two chemo meds, had a big long visit with a physiotherapist, who seemed determined to figure out what’s up with her leg (it’s still bothering her 3 weeks later) and that they left to come home around 4pm. Aside from that, I don’t know much as I wasn’t there. Jon says that everything went well and that Geli felt pretty positive all day. She ate when she got home and then headed immediately up to bed.

We do have to wake her to give her another chemo med, her antibiotics and some gravol, but she should go right back to sleep again – at least I hope.

We have been told that this week should be a fairly good week for her, it’s next week that they are concerned about. Her counts could go quite low again….low as in decimated and we’d be once again on high alert for any possibility of infection, fever or any other indicator that something might be wrong.

We are praying with desperation that she stays as healthy as possible and that any brutal side effects would just avoid us……

Then, we have 2 weeks where we wait, hope and pray for her counts to come up again, and then we start the 4 week cycle all over again. 2 weeks on meds and 2 weeks off….Absolute best case scenario…this whole cycle is done in 8 weeks…..or it could take longer….which would obviously NOT be the best case…..

Today at home was….interesting.

Xani had a meltdown. Jeremy wanted to play on the computer ALL DAY and sulked and pouted when I kicked him off, Siah wanted to be anywhere and everywhere and to get into everything, and the baby cried when i put him down.

My biggest accomplishment today was that the kids were mostly sort of fed, and I didn’t “lose it” and end up a crying, bawling mess.

From that stand point, I consider today fairly successfull…..from any other standpoint, today was a colosssal failure.

Knowing how much I’m typically capable of and able to do…..makes my glaring lack of accomplishment today so much greater.

I don’t know how anyone does this.

I don’t know how we are going to get through the next month….let alone the next year of treatment….and yet we must!

Have you ever felt like you needed to take a big deep breath and you just couldn’t? The only thing you could do was to keep sucking in these little tiny sips of air….and you wonder just how much time each tiny breath is going to buy you?

This is a long, tough road and I know we will get through it. I’m just not sure how and the unknowns weigh heavy on me. The future weighs heavy on me. I’m feeling pretty weighed down right now.

I’ll be okay.

I do want to say thank you to everyone who has given a meal(s) or a gift card(s) or a card or sent an e-mail or even a comment…..

I keep trying to compile a list of people to send thank you’s too and I feel like my brain is a HUGE sieve. We are so grateful for everything. Every bit of love, care and support is truly felt….Everytime we eat a meal given, or buy some groceries or feel the love sent through some caring, thoughtful words – we are so touched and blessed. You have been such a blessing to us.

I, never in my wildest dreams, ever fathomed that we’d be on this journey. I never ever knew what other family’s who are dealing with cancer went/go through. This is a whole world of pain and hurt and physical, mental and emotional energy spent, that I could never have fathomed before now.

Thank you for everything. We are truly thankful!

Safety Matters

Yesterday (Saturday) was a pretty boring day.

After the chaos of the past month, this is not a bad thing, but it also leave you feeling a little lost, as you try to fill the time and space and “come down” from the stress and attempt to figure out some “new normals”.

That’s a lot of quotation marks, but that’s a little how life feels right now…..punctuated by pauses (………) and “quotation marks”.

Angelica had a bit of a better day emotionally, although she’s had a pretty brutal headache for the past 2 days. On Friday it was her back that was bothering her terribly and now she’s had a brutal, brutal headache. I’m wondering if her back is out and we are going to try to book an appointment with our chiropractor for Monday to see if that will help her. It’s so hard to watch her be in pain and to not know how to help her. Because Tylenol can mask a fever, and basically fever is how her body will manifest an infection, we are not supposed to give her Tylenol and so we called in to Children’s today and they are getting her some Codeine. We’re hoping this will help alleviate the pain, and also help her to enjoy herself a little. Because of the pain, she’s been basically laying down and sleeping. I’m not so upset that she’s catching up on some sleep, but it’s hard to see her so “down” or “low” and I’d love to see her cheerful and enjoying herself again. It’s so hard to watch your children hurt.

We did have one moment yesterday that managed to break the monotony of our day….

Josiah has been climbing the counters recently…well, he’s been doing it for a while, but just recently with Geli and the baby requiring a bit more supervision – he’s managed to actually scale the counters and one day Jon found him up on the very top of the cupboards. Not cool!

Jon found these very nifty locks at Children’s Hospital and bought one to “try” at home. He figured that if it worked, we’d just pick up a few more the next time we were there.

He and Jeremy installed it on Friday evening…..I hate it. It’s a magnet lock. There is a magnetic key and the locking mechanism. You install the locking mechanism into your cupboard and once it’s closed, unless you have the magnetic key, you cannot get inside. We decided to keep the key in the cupboard above the pantry (that has the lock installed in it.) That way it was close enough to get at, but Siah couldn’t get it.

You need to have both hands free to open the lock and then you have to remember to put the key back up in the cupboard where it gets stored.

We had one scare where I thought I had locked the key “inside” the pantry, but after a few moments of panic, we found it over on the counter.

Yesterday though, we really did lock it into the pantry and we did not have one magnet strong enough to open the lock. The key doesn’t feel like it’s a very strong magnet and yet….surprise, surprise IT IS!

We tried EVERY magnet we own and NOTHING worked. Some were almost strong enough and we could hear the lock clicking but nothing was actually strong enough to actually unlock the stupid thing.

Finally Jeremy googled and found out that there is a SUPER STRONG magnet inside a Hard Drive and Jon had an old one of those kicking around……amazingly enough, it worked….

Here you can see the little white key sitting on top of the spaghetti sauce jar!

The locks are currently flicked into the “unlocked” position while we try to figure out what we’re going to do going forward. At the very least, we had some entertainment on our boring Saturday!

Trying to Hold It Together

We had one of the Residents who has been assigned to Geli’s case come in and talk to us this morning.

It seems that her blood counts are currently too low to allow for her to go home, but there is the possibility that they could raise enough by the weekend……BUT……she then announced that the Infectious Disease People like to see 2 weeks of negative counts before they will release a patient and in Gel’s case I guess they were testing for 2 different things and on the 27th had one neg and one pos and on the 29th both were negative for any infection…this would push our release date from Sunday to Tuesday.

I’m not gonna lie….I’ve been fighting tears ever since they said that. I don’t want to cry and upset or bother Geli as she’s not really said anything yet, but I just want to go home so badly. I’m so upset. I was concerned about this and now feel a bit like, “what’s gonna change as of Tuesday and keep us in here for another few days”….its so stupid.

I’m struggling today.

Really, Really struggling!

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