Judah – Page 6 – xangelle.com

She Needs…..

I know that a fever is not that big of a deal….well, most of the time a fever is not that big of a deal. And really, it’s not the fever that’s got me so upset….it’s the timing of it all.

It seems like every time something goes wrong….a few more things all jump on top of us, and we are left under the mountain of crap trying to not be squished. Frankly, I’m tired of it all. I just want to have things go really, REALLY good for a long time. Is that seriously too much to ask?

The fever is not that big of a deal, but it means that I cannot go in to see Jon or Angelica and because I cannot go in to see them, the other kids cannot get in to see them. It’s possible that I could drive us all in and I could hang out in the car for a couple of hours with Judah while they visit, but that really doesn’t sound all that fun, does it? So not looking like it’s going to happen like that.

Jon and Geli are doing well, but they are BORED. She feels fine and yet…they must just hang around.

She seems to be doing amazing. There are a few things that need to happen in order for her to be discharged.

– She needs to have negative blood cultures over 48 hours (that’s up tomorrow at 1pm)
– She needs to be fever free for 48 hours (that’s up in the wee hours of Saturday morning)
– She needs to actually have a neutrophil count (that won’t happen until her WBC is over .5 and today she was at a .3)
– She needs to have one blood test trending downward instead of upward….it was at a 25 today and needs to hit lower numbers.

Basically we are looking at the earliest of Saturday morning before she would be discharged. I’m hoping and praying with everything in me that they do get to come home then.

It was a tough day today and yet I supposed it was a good one, in spite of it all. I have really low expectations on what constitutes a good day, ya’ll! Ummmm there was no puking. Very little fighting. Everyone was sleeping by 8pm….and um…ya….everyone got fed. So ya…..it went okay, I guess!

Well, I’m headed off to bed myself….two night with very little sleep are….well….ya….that…..

Night!

ps. Could ya pray for Judah? He’s still feverish and I’m not sure how the night is going to go and I could really use the sleep and he could really use the health……m’kay??? Thanks so much!

Like a Bad Dream

You will NEVER believe what I am about to tell you.

I can hardly believe it.

I put the kids to bed and was in bed and sleeping just after 10pm. I was so tired because we’d been up most of the night before.

All the kids went to bed happy and healthy. Judah woke up at 1am screaming. This is normal. This is how he wakes up. Frustrating, but oh well…..I went into his room to pick him up and he felt like a hot coal.

Can you believe it? Judah has a fever. I was in shock. How the crap does this happen? Why is this happening? I just don’t understand.

I mean, I understand the how and why of a fever, but I really don’t get the timing.

He clocked in at 37.7F and over the night just continued to rise.

He and I were awake from 1 until after 4 am. Right around 4am, Xani came down to my room to tell me that she’d been awake since 3:30am because she had a nightmare.

It was pretty bad. I prayed with her, talked with her and asked her to try to get back to sleep. She went up stairs and I didn’t hear back from her again.

Judah finally fell asleep on my chest and I just used my pillows to prop myself up so that he would stay there and sleep.

He woke up at 6am and Xani came downstairs just before 7am to let me know that she’d not been able to get back to sleep. She was too scared that she’d go back to sleep and “finish” the dream.

This morning Judah’s temperature hit a 39.7F and I decided that it was time for some Advil. I don’t typically like to medicate my kids but this temp was higher than I’m totally comfortable with.

I’m a little perplexed about what’s going on. He isn’t throwing up and he doesn’t have a cough. There is no runny nose! He’s peeing and not crying hysterically. He’s nursing. He’s even eaten a tiny bit of breakfast. He does have the feverish, hot looking eyes and it definitely not his usual chipper self.

He just scored a 37.5F after a dose of Advil…..so its responding to the meds which is a good thing.

I’m tired and upset and really, REALLY frustrated about this. This is absolutely ridiculous. We had planned to go in and see Geli and Jon as a family today. The kids were pretty excited to be going in to see them as they were pretty upset that they had to go into the hospital in the first place. To wake up and hear the news that we were not going in….well, there were a few tears.

I know we will make it through this but it’s still tough. Mostly, I’m angry. Angry that this is happening. It’s crap!

Geli and Jon had a good night last night. She felt pretty good after getting the blood transfusion and didn’t get to sleep as early as I would have liked her to but I’m just happy she was feeling a bit better.

Her counts are all up this morning…

for those who care:

White Blood Count is .3
Hemoglobin is 94
Platelets are 66

So everything is up, even if artificially, which is good. Her temps which were up last night have been hanging around 37.1F which is normal. So we are just waiting to for her counts to come up and for her cultures to come back negative.

I’m hoping that Judah will actually sleep today and then I will hopefully lay down for a nap as well.

I’ll update as soon as I hear any news.

Winding Down for the Evening

Jon and Geli are settled in their room and getting ready to wind down for the evening. There was talk of a movie and possibly some snacks and a midnight run of antibiotics.

She’s feeling and acting a lot better after receiving two bags of red blood cells. She’s not feeling 100% but definitely better than earlier today. We are going to head in to the hospital tomorrow and hang with them a bit. Probably have lunch with them……or maybe dinner….or both? Who knows?

We just spoke with Jon and Geli on Skype and now I’ve kicked Xandra and Jeremy up to bed. I’ve got to go and “encourage them” to actually shut the lights out and go to sleep and then I’m headed to bed myself. It was a LOOOOOOONG night last night and solo parenting is not easy and I’m not sure how long I’ll be at it. So I gotta sleep when I can….and unfortunately, I don’t do daytime naps as easy as I’d like.

Fortunately, my parents are AMAZING, and they’ve kept Siah overnight. They had him last night (which was a blessing) and they are keeping him again tonight. He still wakes up in the middle of the night and climbs into our bed. It’s not that big of a deal, but typically him and Judah tag team each other and only one of them is up at a time……..which means that if they are both here…..I don’t get hardly any sleep. The worst thing….when he sleeps at my mom’s house….Siah stays in his own bed. What is up with that? Oh well, I just keep telling myself that this is not a forever thing. One day I’ll wish for cuddles….I will try to enjoy and appreciate every one I can get right now.

Thanks for all your prayer and support. We really appreciate it.

Excuse the stupid sound that I make with my mouth. Judah was doing that and I was trying to capture it on video cause he was doing it ALL DAY! But when I turned my iPhone on so that he could see himself in the camera he got so excited and stopped doing it. But his little happiness and laughter is so contagious…….It’s too good to keep to myself. Sometimes I wish I could bottle it up and give it away. The world would be a better place……

May your evening be peaceful and full of rest.

I think it’s time

I think that it’s time to get a new gate.

He’s such a cheeky little monkey.

This and That

Angelica went in for her last dose of chemo for this week. She has another 4 doses next week and then two more doses after that and she’ll be done. She was feeling pretty tired yesterday and the day before and so we asked if she could come in early today and get her counts. Her Hemoglobin was at a 95 on Monday and while it wasn’t likely that it had bottomed out, we just wanted to check it out.

When they did the blood work today there was good news, and bad (sort of)….the bad news was that her platelets had dropped from 220 to 146. Still in a decent range, but definitely dropping. Her White Blood count and her neutrophils are both UP, which is awesome as those are the infection fighters. They will be on their way down. The high point of these drugs should start to kick in the middle to end of next week (the nadir is 7-10 days). And her hemoglobin was at 95 which is lower for normal people and even low for her, but that’s exactly what it was on Monday so no need for a transfusion although we are likely looking at either platelets or blood or both in the near future.

(Speaking of blood, I’m scheduled to donate blood on Saturday June 18th…..have you given (if you’re able)? Would you consider it? It could be your gift!)

Other than that, today was a good day for her and that’s amazing. I’m still praying and hoping that we make it through the end of this round with no infections and no hospital stays. Actually, starting right now, I’m going to speak it out…..THERE WILL BE NO INFECTIONS, NO HOSPITAL STAYS…just protection and health!

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Judah is growing so fast. He took about 4 steps on Thursday??? I think, maybe it was Wednesday. I don’t remember and then later that day he’s been taking steps and steps and more steps. He is much faster and confident crawling and so as soon as he feels unsure he drops down and crawls, but we will have a walker on our hands and most likely before his first birthday.

He is also communicating with us a ton. Here he is letting us know that he’s done. He’s done eating. He’s done sitting in his chair or he’s done playing on the floor. Anything that he’s had enough of or wants a change, he’ll typically put his hands up with his palms facing up and say “done!”

He gets a little upset with me about half way through, I think because I’m no actually doing what he wants. This child, he knows how to let you know that he’s not happy with you. No worries about him getting lost in the masses. He is very vocal.

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I cannot wait for school to be over. I know that as soon as it’s over I’ll be wishing it was back in, but right now, I’m really ready for the summer to start so that things can just slow down around here. No early mornings. No morning meltdowns. No rushing. No lunches to be made…..the list goes on and on and on. I’m just ready for summer. I’m also ready for some summer days. It’s been so miserable, eh? BRUTAL!!!!! What’s the weather like where you’re at, if you’re not from the rainy, grey Lower Mainland!

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How do YOU deal with frustrations in your life? Any tips, ideas, thoughts to share, comments to ponder? I’d love to hear from you!

Hope you enjoy your weekend! We have no real plans. It’s a take it easy kind of weekend. I like those.

First Hair Cut

Judah is 11 months old.

He will turn one year old on June 24th. It’s kind of hard to believe that almost a year has gone by since he was born. It’s been a busy year, that’s for sure! I haven’t been able to just enjoy each and every moment of Judah’s first year in the way that I wish I could have, but it’s okay…..Angelica is alive and that statement right there, kind of puts it all into perspective.

Enough with the deep and serious talk, let talk about something a bit lighter, shall we?

I love little baby hair. It’s so cute and soft and fuzzy. Judah has a cowlick in the back of his head and it makes his hair stand straight up. It’s so SO cute. Up until now, there’s been no need or reason to cut Judah’s hair, and I like to leave my babies hair alone because usually as soon as you cut it, they end up looking like little boys and I already have two little boys…I still want my baby!!!!!

But……it was getting so goofy looking and I just wasn’t sure what to do.

I thought about shaving his head, like the rest of us were doing, but I really wasn’t sure that’s what I wanted to do. I mulled the idea around inside my head over the weekend and by Monday night I decided to go for it.

We had just finished dinner and Judah needed a bath. He is not the tidiest eater. Typically we take him directly from the dinner table and put him straight into the bath…and he has food EVERYWHERE!

Monday night, I figured that I could buzz his head before we bathed him.

Man, this kids is SO cute! (At least I think so!)

He did so good. I’ll admit that I was nervous about how he would handle the clippers and whether he would sit still enough for me to actually buzz his head, but he wasn’t scared of the noise. He didn’t fuss or squirm too much, just played with a few random things that we gave him and in minutes it was all done. Here he is freshly buzzed, just before his bath.

I managed to snap this shot of him on Tuesday morning. I sure love this little boy. I think that in some ways the hair cut makes him look more like a baby….which I’m not exactly upset about. Mind you, he looks like a freaking HUGE baby! You should see him in a pair of footy pyjamas……so SO cute!

Okay, enough of the cuteness talk….here he is!

Miracles Can Happen

Well, yesterday was a day worth noting!!!!

My son….my baby – I’ve moaned about the fact that he doesn’t sleep during the day. Being just totally honest he’s not been the most amazing night time sleeper either, but he does go to bed around 7:30pm and pretty much stays mostly asleep until 6:30am the next morning. He might wake up once or twice (or three of four or five times), but he just wants to cuddle and nurse and is really not even awake!

I’ve been incredibly frustrated at the fact that this sweet boy of mine naps for 10 minutes at a time. Pretty much rendering my day, useless. He is slowly starting to play with toys a bit and can either be entertained by the kids or entertain himself for short periods of time, but for the most part…he wants to be held.

Just recently, I’ve tried putting him to sleep in strollers and reclined high chairs and while I might squeak out a 20-25 minute nap, which is nicer than a 10 minute nap but it’s not been a life altering as I’d hoped for. He’s cute though, isn’t he? He’s such a big boy!

I love that he wants me and at the same time – there is SO MUCH GOING ON AROUND HERE! And I often feel incredibly frustrated at all that I’m not able to accomplish. Today, we had some family photographs taken by Tania from Red Handed Photography. I’ll share more about that in a bit, but basically Judah fell asleep as soon as we put him the car seat and then woke up 10-15 minutes later after we parked the car. That was his morning nap….awesome eh? As least he didn’t wake up grouchy – that would have awesome, no?

I really wasn’t sure what he was going to do for the rest of the day sleep wise and he was pretty cranky. I tried twice to put him down and nope – he wasn’t having any of that business. Finally, at 3pm Jon just walked with him for about 10 minutes and BAM! He was out. Jon put him in his crib and the little darling slept…

HE SLEPT FOR AN HOUR!

I got SO MUCH DONE! It was amazing! Jon took the other boys to the park, Xani had gone swimming with a friend and Geli was visiting my mom….so it was just me trying to plow through as much house crap as possible before everyone came back…

It is so nice to feel like you’ve accomplished something. It’s a lovely feeling!

And now I must go and attempt to accomplish more….so I shall leave you with just a quick video.

Judah wants to tell you something!

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?

My Little Picasso

Judah loves to color. I don’t remember exactly how we figured this out, but one day Judah got a hold of a pen and the rest is history.

I think…..I remember one day when I was making a weekly menu plan, something distracted me; and he grabbed my pen and started scribbling in my notebook.

It’s interesting to me, and we are encouraging it as much as possible, because I don’t remember any of my other boys being this interested in drawing or coloring.

The other two boys never really showed any interest in anything to do with pens or pencils or coloring…..it just wasn’t their thing….

But Judah seems to really enjoy seeing the marks that he can make on the paper. At this point, he will use either hand to color even though, he seems a bit stronger with his right hand. Mind you, if you try to take the pen out of his left hand and put it into his right hand…..he is NOT happy about that. There is a lot of screaming and general upset-ed-ness…..

I wonder if he’s gonna grow up to be an artist or……if he’s just really gonna enjoy coloring? We’ll just have to wait and see.

(part 2 is still coming…..I promise)

Magical Creatures…

I am just trying to survive.

I am on day 3 with a cranky, not feeling 100% baby who wants to be held ALL. THE. TIME! And, that would be almost okay if he would nap, but so far today we’ve done 2 naps for a combined total of 19 minutes. YAH! Cranky, OVERTIRED, Not Feeling Well Baby, for the win!

The house is um…..sort of somewhat tidyish, ya now minus the rice crisps that the baby was eating off the floor that he managed to smoosh into 5 million tiny shards. I still need to sweep those up, and I really should be folding the 4 loads of laundry and washing Geli’s bedding before she comes home tonight and all of that is kinda difficult to do with a cranky baby hanging off your hip. Did I mention that the baby weighs 30 pounds? Yah, cause doing anything while carrying around 30 pounds is not the easiest thing in the world.

I finally packed the boys up and put the baby in the stroller and we walked around our complex a few times and out and around the cul-de-sac just to get a bit for fresh air. Honestly, I had hoped that maybe this tired baby would crash, but no luck so far.

BUT…..he is playing on the floor in front of me, while I sit on the couch typing up this post, so that’s positive right.

I did manage to get a roast into the crock pot this morning and so at the very least dinner is taken care of.

Did ya catch that reference up there a few paragraphs back? Jon and Geli are coming home tonight.

As of 7pm tonight, the 48 hour time line for her blood to culture any bacteria is up and she gets to come home. It’s pretty much determined that it was just a virus and they don’t want her there any more than we do, and so we’ve asked to come home as soon as the 48 hr wait is up.

Her white count is actually coming up and her neutrophils were above .5 this morning and that’s a good thing. Bad thing was that even though she received red blood yesterday it only raised her levels by 15 points and that’s not enough to help her feel better. She was at a 71 yesterday for her hemoglobin and while some kids can tolerate being down as low as 60 or 50 something, Geli starts to feel pretty rough at 80 something….. She feels short of breath, and has headaches, and feels like her heart is pounding and is major dizzy and light headed. The chemo that she is getting hits it high point of effectiveness (the nadir) tomorrow and so some of her counts are still coming down. So the 85 that she hit as of this morning will probably end up back in the 70’s or lower as of tomorrow and so in order to deal with that, Geli is getting another “strawberry shake” today. Her platelets were also at a 20 and while that’s not the end of the world, we don’t want to have to be on pins and needles around her in case of cuts or bruises and so she is also getting platelets today. But after she gets filled full of red blood and platelets, she is good to come home! Hooray!

I spent a quiet day at home with my boys. We sat outside for a while and it was so nice to just be outside in the sun. I love the sun. It makes me feel so happy. I’m so ready for spring and summer to be here. I love the snow in the winter, but the rain…..well, I’ve had enough rain this year.