My Life

best afternoon ever.

This morning was a hectic, messy, late for church morning. Seriously, it was the latest I have EVER been for the meeting...remember I play the organ for everyone so normally I need to be there at least 20 minutes to 2pm so I can start prelude music. Well, I got into the chapel running like a madman at 1:58. No joke. Thankfully a kind lady had stepped up to play some music until I got there. I'm usually right on time or early, but today was just one of those days...Jude and I went head to head all morning and then somehow I miscalculated the time and just ran terribly behind. Whew.

But we came home, and I put some pizza dough in the bread maker, and hung out with the boys. We made pizzas and then we all went out with our pillows and blankets and played on the tramp. The weather is perfect right now- 70 degrees with a light breeze, and it rained all night last night so the air is really fresh. So much fun just being with the boys and nothing on my mind...nowhere I have to be. Looking forward to more of that tomorrow. Good times.

Jude took this picture...he's not bad, eh? Except it shows all my forehead wrinkles that I'm a little self-conscious about. That and my pores. Which I'm also slightly self-conscious about. And Elijah looks like he's glaring in anticipation that Jude is going to chuck my expensive camera across the yard. Eh, whatever. Live a little, right?  :)

Everyone gettin' cozy. Elijah's straining to get all our big heads in the photo.

And finally, the temperamental and unstable photographer himself (later) drinking some disgusting hose water which will probably land him back in the hospital before the week's out. But it sure made a cute picture.

Hope your day is great tomorrow. I'll be back Tuesday.

a few things on my mind.

 

• Yesterday started with a BANG...literally. Liam came running up while I was brushing my teeth to tell me Jude had done something "SOOOOOOO bad". I ran down to find him standing by the kitchen table where he had taken my recently purchased groceries out of the bag, grabbed the eggs, opened them up and then threw them on the floor. As if that wasn't enough, he had taken three of the surviving eggs and threw one in the kitchen, and two in the living room. When I went to put him in time out he hit me in the face. WHERE DID THIS KID COME FROM!? Can I remind everyone that this kid isn't even 2 yet? AHHHHHHHHH. I'm about to send him to toddler boot camp. I know every child is different, but we haven't been any less lax with our rules despite the rough start this kid has had, and I can't understand why he's SO much more snotty and mean. I have to keep reminding myself this will pass soon, but in the meantime he's living in time out. He's just so particular and so stubborn. He makes me tired! I said it before, but I'm open to any creative ideas!!! I was talking to my sister and her roommate who were here yesterday and telling them how frustrated I am with Jude, and I said "We've never had such a naughty kid!". Milo said loudly behind me "BUT NOW WE DO!". Amen, Brother!

• My friend and I took dinner to a friend on Thursday, she and her husband have both been ill. As I was leaving she ran out and cut me 12 roses from 12 different rose bushes. I've never been much of a rose girl- I'd much rather have daisies, but these roses are SO fragrant and beautiful, and each one has a completely different scent and look. The picture doesn't do them justice. My Grandma Dorothy has the most amazing rose garden and was thinking yesterday that I might want to try my hand one day at a rose bush or two. Jude keeps trying to pull them off the table so he can smell the "Fwowers".

• Rarely do I look in a magazine and say "I REALLY LIKE THAT OUTFIT", but I was reading through my current BH&G a week ago and I ripped this page out, because I REALLY like this outfit....minus the funky sandals. I really have been hurting in the church clothes dept lately- I don't have much for summer, and the few that I do have are pretty tired looking. I found the exact jacket here (let's hope the color is a little closer to the picture in the magazine, because otherwise I'm going to be mad that BH&G photoshopped it to look more spring green when it's actually more chartreuse). The bonus is, it's on sale for $20 down from $50, and I found a 25% code and free shipping by searching around online, so I got it for less than 16.00 shipped. SUHWEET! The skirt is here, but it's more than a little out of my price range, so I'm going to hit up JoAnn Fabric sometime this afternoon and see if I can find a similar print and just make my own skirt. I have a pattern that's similar, and I always like a good sewing project. We'll see how it turns out!
  

The holiday weekend is here...and despite the forecast yesterday of heavy showers for the next four days there is a bright blue sky out. Now if only I had a boat. Taking a boat out on the river sounds perfect for the day. :) Instead, we'll be working on finishing up a few projects around the house and park hopping with the kids. The pool opens today, and we might make a short appearance over there too.

Happy Memorial Day!

a step back into reality.

So, I have this kid. And he's sick all the time. But he's also still a 2 year old (almost), and he's a STUBBORN one at that. He is big, and strong, and has a new habit of hitting. HARD. I've noticed most of the time it's if he's bored and no one is paying attention or playing with him (like when the boys are relaxing or when I'm on the computer). But he also does it when he's mad, or just randomly. Yep, I'm the mom with the hitting kid. He also says NO all the time, whenever I say pretty much anything to him. It's hard for me, because I'm stuck here. I feel for him, and know he's had it hard, but when he throws his dinner across the room and then yells "NO" at us, it's pretty dang hard to not...well...warm up his hiney.

Here's the thing. I'm a pretty strict Mom, and my other boys were never hitters. We got the occasional "NO" but not the serious ATTITUDE he puts across. I think there is a time and a place for spanking (not to be confused with beating out of anger), but I have a REALLY hard time spanking a child that young for....hitting. Capisce?  Also, he's been especially coddled in his short 22 months because of all his problems, but I'm having a hard time knowing where to draw the line. He has really hurt the big boys several times by whacking them in the face with toys and other items, and I need him to know it's not ok (I say it over and OVER AND OVER, just so you know!).

*sigh* I sometimes wonder if this is part of the unfortunate issue of having to keep him home and away from everyone else...his sharing skills stink, and he's really demanding. My other kids are so CHILL, that it's really hard for me to allow him to be such a stubborn stink. He's definitely not a brat all the time- he's very sweet and is trying really hard to deal bravely with all the stuff we throw at him. I get a lump in my throat every time I've just seen him succumb in frustration and tears to the pain of a needle (or 20!), or deal with being strapped down for the umpteenth test in a row. He is getting his strength back after the seizure and the infection and he's acting out in ways I've not ever dealt with.

I guess I'm fishing for ideas...anyone? anyone? How to deal with a hitter?? I've got no experience here, and am not sure what else to do that might be effective. I hit up Mother Google, but just came up with lots of the same thing "Talk it out, find the triggers". But, I KNOW the triggers and unfortunately they can't always be dealt with. I can't ALWAYS pay 100% attention to him, and he can't think that he can get attention (although he does in a twisted way) by whacking his family and other kids.

a photo today.

This isn't the best photo, he's not smiling, and he has his huge, comforting binky in his mouth, but this was the first time during our stay last week when Jude finally gave in to me and allowed himself to rest in the huge metal crib that he was supposed to stay in. (yeah right! It's a MONKEY CAGE!) We'd been there two days and he wouldn't let me put him down for a second...he either had to be walking up and down the hall, or sitting in my lap on the bed or rocker. The biggest problem with walking was, he is getting heavy and he was attached to a IV pole the entire time. So I had to hold him in one arm and walk the pole with the other. To top it all off the hospital had a security system that was on the fritz, so at certain points in the hallway there was a possibility of setting off the alarm, which would subsequently lock down the entire hospital while flashing "JUDE STANFIELD! JUDE STANFIELD" on the monitors hanging in the halls. Yeah, I did it TWICE. :) Anyway, back to the photo- this was mid-morning on Tuesday, and I asked him for the umpteenth time if I could PLEASE put him in his bed so he could watch Nemo, and he said "SES, MOM".

Well, HALLELUJAH.

I crashed in the bed for all of Nemo x 2. Thank you, Disney...Bless you for NEMO!

(which BTW he watched at LEAST six times a day for the 4 days we were there! !)

sunday night.

Well, my yardsale went pretty well...I made $205. Not too bad considering how little I had out. I still have a double jogging stroller to part with, which I'll probably toss on Craig's list, and the rest of the odds and ends Elijah took right away to Goodwill. That's a smart thing, because I have this habit of talking myself into needing things that I haven't used or wanted for years once I see them again. :) So, am I going to buy myself a hot new dishwasher? NAY. We decided to use that money to have the new carpet put into the basement so we can have a better place for Jude and the boys to play this summer when it's hot {which by the way is RIGHT NOW...HELLO, 105 DEGREES on my thermometer today!!!}...so we'll be getting that put in hopefully this week so we can get the TV and the kid's desks moved down there where it's really cool. I think I might even paint down there to make it a bit cheerier. Ugh, I hate doing projects on a house that's for sale. But, I keep reminding myself it will be worth it when it sells and we're doing projects on the new house. YEA. That sounds so far away.... :)

Apparently the campout went great, everyone at church today told me how surprised they were to see him there with Elijah and the boys. Yeah, me too, people. BUT...even though I bit every single one of my nails off sometime during the 21 hours he was gone, it seemed to be a big moral booster for him- Elijah said he just ran and ran and had a great time. That's the longest he's been outside for his entire life. I guess he ran around with someone's football and had a party. Elijah kept him really clean and he only came home with a light runny nose, probably just allergy related because it's gone now. He was totally exhausted all day yesterday, just laid on the couch, or bed and slept, and kept asking for "HahDogs". We also took him to Sacrament today for the first time in forever, but Elijah waited until the meeting was starting and then carried him in so people wouldn't touch and try to talk to him. That sounds rude I'm sure, but the less people he comes in contact with it seems the better he does. I took him home after sacrament and the kids stayed with Elijah for class. Big week for him. I think we're all just about recovered from the last few weeks of drama, and the soonest the neurosurgeon will see us for talk about the surgery is the beginning of next month, so we're going to put it all behind us and enjoy the next little while together. The pool opens (hOORAY!) in less than a week, and swim lessons will start shortly after that. We have less than a month until Liam is done with school and then I'm hoping to maybe take a trip down to visit my Mom and Dad for a weekend.

 

And now a diaper and some bedtime stories call me!! So goodnight!

girl night in.

It's that wonderful time of the year where Elijah takes the boys out for a Father/Son camping weekend with all the other Dads and sons in our ward. This year he took JUDE much to my surprise, especially with all that's happened in the last few weeks. But we're trying to give that poor kid a sense of normalcy from time to time, and because they are camping at a very park-like place I agreed to it. Well, and because they were going to sleep in the car, with the hepa filter, and he has a huge suitcase full of medicine, nebulizers and other goodies in case of the "what-if's". I should really stop talking about this before I jump in my car and go get that baby...I'm a little apprehensive about him being out there. However, Elijah is such a good dad, and I trust him implicitly...and I know that Jude having to watch him leave with the tent, a box full of treats and the other boys wouldn't have ever flown. Jude is all about equality....Little stinker.

When I heard the boys were going to be gone my plan was to spend all of the weekend cleaning the house and sorting through all our stuff, but then I remembered the block was having a yardsale, so I took the chance to get rid of a few things. I got up at 6 am to put all my goods out, and even though the sale was advertised starting at 7, the yardsale diehards were already waiting by my covered tables when I walked out the front door.  I'm hoping to add to my dishwasher fund...should I put a sign up saying so? :) "PLEASE HELP THIS POOR MOTHER WHO DOESN'T WANT TO DO HER DISHES {BY HAND} ANY MORE BUY HERSELF A NEW DISHWASHER". LOL. It's a pity yardsale.  But so far so good...I'm out here hanging out, it's only 8:30, and I've already sold about $105 worth so WOO HOO!

I'll be back later to give my full report. Meanwhile I'll sit in my chair disgustingly overheated in this 95 degree weather dreaming of THIS. JUST KIDDING. More like THIS.

getting back to normal.

Slowly, but surely. Spent 90% of this week washing, sorting, folding and putting away laundry. Whoa...I've decided it's darn near time for summer to come so I can put away all the gloves, hats, long sleeves, sweatshirts...all the extra stuff that collects during the Winter. Ready for shorts and T shirts and LESS LAUNDRY. The boys are getting back into their routine, and Jude seems to be doing so much better. He's on some heavy duty antibiotics, but besides a little irritability and seemingly very tired all the time, he's ok. He is being VERY picky about what he eats, which isn't his usual style- he only wants pancakes and "Nacks", granola bars and crackers from the snack drawer. I don't want to fight him much because at least he's finally eating, but I also don't want him getting the big idea that he can be super picky. *sigh* Guess I'll fight that battle in a few weeks when he's back up to weight and feeling 100%. We go back to the hospital Tuesday for a blood workup and a checkup, and then we'll hopefully be free of the Dr for a few weeks.

I had an engagement shoot this evening, remember THIS cute girl I shot a few years back? (might have to scroll down a bit for the picture! She's getting married next month, and I'm shooting the wedding. We did their engagement pictures at a local golf course, and they brought their little boy who has a severe phobia of grass. It's sad to laugh, but it was SO cute I couldn't help it! He sat trying to lift his feet off the ground one by one while wailing to his parents. Little cutie!

I haven't had a chance to edit these picture yet, but here's a sneak peek...They might appear a bit dark...I'll be finishing them up tomorrow.

we are home.

Once again. We got released late this afternoon with prescriptions and instructions up the wazoo.

But we are home.

I'm totally and completely wasted. And I drank too much Dr. Pepper in the hospital to keep me awake and alive. I couldn't eat because of nerves and bad cafeteria food...I just drank nasty pop with delicious hospital ice. Soda is terrible for you, and I always forget how HORRIBLE it makes me feel a few days after drinking it, which is why I never drink it. Ew. I'm planning a serious detox for my poor body very soon.

I'll update tomorrow morning more about the Jude man. He's sleeping soundly in HIS bed. He was ecstatic to be home.

home for a flash.

Anybody want to guess where we are?? Would you possibly guess a hospital??

We checked J in Sunday afternoon after constant high fevers that started on Thursday. He vomited a few times when his temp got above 104, and then quit drinking Sunday, so we decided it was over our heads. I didn't get a chance to update what happened DURING our stay at Children's, but this is pretty much it...HE GOT SICK AGAIN. Blah. After 2 trips to the ER up there they sent us home saying it was viral, but they didn't check his CBC since he'd had one done the week earlier. I guess I should have pushed for it anyway, but the kid despises his blood draws so bad I really wanted to avoid that sort of scene. Somebody smack me.

Anyway, his tests came back this morning, and he's dealing with a staph infection of some variety. They have given him lots of antibiotics, and are hoping that tomorrow we can check him out, but we'll be making sure the infection is gone. I'd really LOVE to know where this infection came from, but I guess any one of the four hospitals we've been to in the last seven days could be the source, or something else I suppose.

I've been there since Sunday with NO cell phone service and NO internet. Talk about dramatic. But if you've tried to call that's where I've been.

I'm heading back to relieve Elijah so he can come home with the boys. Hopefully we'll spring the place tomorrow.

I'll update soon.

saturday night.

Sit back, I foresee this being a long post.

Today has passed so fast with a lot to do. Being away from home makes a lot of work when you get back. Not to mention the fact that we're still lacking our dishwasher which broke in the middle of last week. I didn't realize how much I loved my old Kitchen Aid dishwasher until it was gone. Darn it. But when I called the repairman he said since it's 15 years old (makes me wonder where it came from since the kitchen was totally remodeled right before we moved in, and that was Oct '05) that if HE were me that he wouldn't bother putting any money into it.  Anyway, I'll be watching for a floor model or a closeout in the next little while. Just what I need to put $$ into right now!!

So, I've been trying to decide how much to talk about the last few days- We really don't have a lot of answers yet so I have a hard time talking about things I don't know much about about myself. It's amazing, since the day Jude was born I had this feeling that I needed to learn to be more patient, and I always took it that I needed to be more patient with others, but I'm starting to realize that before I can be more patient to others I need to be more patient with myself. I think Jude is my lesson in patience with myself. Coming to grips with the fact that sometimes we can't understand everything, and desperately trying to live my life for my family as best I can even though I may not know everything that I think I need to about some things.

We went up to Seattle to have EEG and MRI tests done to rule out any issues that may have caused Jude's enormous seizure last week. Since he has NO personal or family history of Epilepsy, they wanted to take a look and see if there was anything going on and also to get a "baseline" for any problems he might have in the future. Everything went great- the EEG was perfectly normal, his amino acid tests totally great, all his other bloodwork clean with the exception of his white blood cells which are still elevated. I met the morning after his MRI with a Neurology nurse practitioner, and after she asked tons and tons of odd questions she finally got down to the meat of our discussion. She told me that although there were no tumors or lesions found they did come across an "incidental finding", meaning they found something they were not looking for, that was not related to the illness he currently is dealing with.

Jude has a rare brain malformation called Chiari 1. It's congenital, meaning he was born with it, and also CAN be hereditary, although that is not something they focus a lot on. Something that is important to point out is that is has NO RELATION to his Alpha 1, and so far as we've been told NO CONNECTION to his seizure. I'm not 100% convinced about that though, I've read some things that make me feel a bit otherwise. The condition is hard to explain, and like I said, I still know very little about it, so I'll try and make as much sense as possible. I tracked down this picture so you can understand a little better what I'm talking about. I'm still taking it all in myself.

The skull has a small opening at the base of the neck. Generally the cerebellum curves up in a rounded shape, but Jude's is actually growing down his spinal column in a beak like shape. The spinal fluid (CSF) flows up the spinal column and around the brain, but Jude's has only about 10% of the flow through his CSF spaces that he should. This can cause too much fluid to stay in the brain, from poor drainage, or not enough, which can cause compression of the brain, especially around the base of the cerebellum.

The cyst that you see in the second picture is called a Syrinx, and as of right now Jude does not have that. But in time if the cerebellum is left with it's hernia it could cause a Syrinx, many developmental problems, paralysis, and tons of other issues. Also, the biggest problem with Jude's particular case is, the flow of his Cerebral Spinal Fluid is very restricted, so compression will potentially be a problem.

Now comes the part about patience. Thursday after I was told all this, (and that they have no idea what's behind the major seizure) Jude started with fevers. Early Friday morning Elijah and I finally took him into the Emergency room at Children's to try and get his temp down. He was at 105 with Tylenol, and wasn't getting better after almost 8 hours of trying different things. We were sent home after the ER got his temp down to 101, but shortly after we got back to where we were staying it shot back up again. We went to an appt to talk to a Neurosurgeon about the Chiari that they'd found, but the Dr was unable to meet with us and after his nurse answered a few of our questions she told us we needed to take Jude back down to the ER because he was too hot. We checked BACK in to the ER and then after just getting Tylenol for him and seeing that his bloodwork wasn't showing a bacterial infection, we finally decided to check ourselves out and try to get home. We drove him home and have been dealing with his super high fevers ever since. He hovers between 102 and 105 for about 10 hours at a time, and then cools off for an hour or two when he eats, and then will start to get quiet again and his temp will come back full force. It's got the two of us frustrated beyond belief because there is NOTHING that we can do about it. He doesn't respond real well to Tylenol or Motrin, and you can only convince a miserable 2 year old that a tepid bath is a good thing every so often. Elijah and I have been taking turns sleeping and taking care of him, and we're hoping that maybe tomorrow will see a better day and he can take this virus down. All we can do is try to keep him comfortable and figure out creative ways to get liquids down him so he won't get dehydrated. If it goes through tomorrow we'll have our pediatrician check us back into the hospital so he can get some IV fluids for a day, but we want to avoid that as much as possible because Jude turns into a maniac the moment we walk through the hospital doors. I am frustrated with the situation and impatient that we spent so much time up there and only came home with a new virus, new problems, and new questions that can't be answered just yet.

So that's all I have to tell for now. We can't make any decisions about how to treat this for him until we talk to a neurosurgeon and have a different kind of MRI, and as of now none have any appointments available until July. We're looking into going somewhere else for a consult, but Dr. Ellenbogen at Children's is supposed to be the best in his field with Chiari, so we should probably just sit tight and try to make sense of this and wait in line for a standby appointment. At that point we can know more what we're dealing with.

It's time for me to take my "sleep shift". so I need to get off. Let me know if you have questions. I'll try to answer them as best as I can.